Butterfly Warrior

Ask me about Lupus

  I was working the information booth at a Lupus Awareness Event  and a group of 12 -15 year old girls  came and asked me about Lupus. One of the girls has a parent with Lupus. These girls put me thru my paces ! As I was speaking to them, I realized that  I had forgotten about children being so open, honest, and curious about everything. Children will just ask what they want to know but as adults we aren't comfortable asking questions like that anymore.    Within our support groups we've discussed how frustrating it can be that people don't seem to interested in asking about Lupus. I don't agree with the statement. I think a lot of the problem might be that people may not know HOW to ask about Lupus or any other illness. When we grow up we control the curiosity that we had as kids. We aren't comfortable with asking those kinds of question anymore. 

As adults  we don't want to be intrusive so we don't  ask those kinds of questions anymore. How would you approach someone about their illness? If you knew someone had cancer and  were willing to talking about it; how would you approach them to ask? How do you phrase the question so it's supportive? How would you ask a questions about someones health without sounding nosy?

  On the other end of the spectrum quite a few of us aren't comfortable talking about Lupus and how it affects us.  Some of us; myself included; make like Lupus is no big deal. When in reality it's the exact opposite.  We also downplay Lupus because we don't want people to feel sorry for us or give the impression that we want sympathy.    There are times when we shutdown the person asking by saying that "we are doing fine".  Speaking for myself,  I am not completely comfortable showing that much vulnerability. I also don't like to come across as weak.  Intellectually I know it's ridiculous; it takes an incredibly strong person to keep fighting something that wont ever go away. 

 One thing for sure is that it isn't easy opening up yourself and not knowing how people will react to it.  Another reality is we can't control how the information we give people is received. Some will think we are exaggerating, lazy, and even faking it. Sometimes our spouses, children, and other relatives don't what to hear about Lupus or discuss us being ill. It's hard to see someone you love go thru hell and not be able to help them. It's easier to for those close to us to  pretend that we are invincible or normal. As wives, mothers, fathers, sisters, brothers, and children that's how they see us and they don't want their illusion shattered. My husband is very understanding and very  empathetic and after 17 years he still goes to every rheumatology appointment with me.  

I noticed about 5 years ago or so if my labs are terrible or something that he isn't ready to handle just yet he'll say "Well Babe your relatively healthy".   It used to upset me so much, I mean if this is his definition of healthy what would unhealthy or sick be? Then I noticed that this is HIS way of coping until he's ready to deal with what we've learned. I don't correct him anymore and I don't jump to conclusions about those words anymore. I have to let him process this and come to a peace with it just like I do.  

 The bottom line is that when share our story the reaction of the person(s) isn't a reflection on us or Lupus.  How they chose to react to what we've told them is out of our hands and up to the listener.  

Intimacy

Intimacy can be challenging when you have lupus. Lupus and its treatments may cause changes in your physical appearance, and these changes -- skin rashes or lesions, hair loss, weight gain -- may affect your sense of your own desirability. Joint pain, mouth sores, vaginal ulcers, and a decrease in lubrication from the glands can slow sexual responsiveness and make both foreplay and intercourse painful. Pain, fatigue, depression, and certain medications can lower your interest in sex and intimacy. And, if the frequency and pleasure of intimacy and sex fade, the partner without lupus may feel hurt and confused, or even resentful and angry.

But it is possible to regain intimacy and tenderness between partners. Good communication will help counter negative self-perceptions or feelings of rejection, and can keep an amorous spark alive even when sexual activity wanes. Physical adjustments, such as using pillows for support, finding less painful positions, and applying lubricating ointments and creams, can relieve discomfort during sex. Taking a warm shower or bath can help relax sore muscles and joints, and anti-inflammatory medication may also provide relief. Sex aids can help promote a partner’s response to intimacy. Other forms of physical contact -- gentle massage, tender touching, a loving embrace -- can provide intimacy without intercourse. If problems persist, couples should seek the help of a licensed therapist, to help improve communication and offer suggestions.*      

   We all remember the beginning of our relationship or marriage, the passion, the joy, and falling in love. It's called the honeymoon stage. I certainly remember when my husband and I were in the honeymoon phase. We couldn't get enough of each other, we spent every spare moment being with each other. We spent a lot of time making love, holding hands, staring longingly into each others eyes. We were very passionate and no one existed except us.  Never in our lives did we think that things be any different from that special time.  Then life happened; having children, changing careers, moving, running errands, making dinner, and household chores. It's so gradual you don't even notice it at first, we don't have time to stare into each others eyes for hours at a time anymore. With all the changes in our lives and time constraints it's harder to find time to be spontaneous in the romance department. Sometimes it feels as if have to  we have to get out calendars and schedule alone time with our spouses. Now on top of the normal course of relationships and family life, let's factor in Lupus.  

    It takes work to not let any part of your marriage suffer and it is very true of making love as well. Factor in Lupus on top of  family life and the normal course of relationships intimate times with your spouse takes a back seat.  With Lupus there are so many changes in your body that can occur. 

• Hormonal changes that can occur with Lupus and cause ulcers in your mouth or vagina
• Fatigue can make sex nearly impossible 
• Joint and muscle pain can make sex uncomfortable or painful
• Lupus medications can cause weight gain, decreased libido, hair loss, acne, and rashes
• The medications can also cause erectile dysfunction for males and vaginal dryness for females 

 

Body image issues can and do occur when these things happen to your body and are out of our control. Any and all of these things can fear from your partner and yourself that sex will hurt you and make things work. You and your partner can feel frustrated, rejected, and  insecure by the reduced amount of sex and the changes in our libido. The changes in our bodies can cause body image issues. We may not be comfortable with ourselves anymore or feel attractive. If we don't feel attractive we may feel that our partners don't feel that we are attractive either.   These things have a huge effect on our self esteem as well as on our every day lives and it can most certainly have a negative effect on our private lives and sexual health.   Our sex lives to do not have to die because we have a chronic illness. 

• Communication is key, talk to your partner and your doctor 
• Vaginal lubricant can help with vaginal dryness
• Medications are available for erectile dysfunction
• Take a warm bath or shower before initiated intimacy in order to relax muscles and joints
• Try different positions or different times of the day
• Take advantage of the good days
• Try massages to relax your body and mind
• Cuddle when making love just isn't possible
• Seduce each other with phone calls, texts, and notes

Most of all keep trying! Don't let frustration from Lupus and other symptoms ruin your sex life.  

 

 

 

 

 

 

 

 

www.lupus.org

Lupus Nephritis1

"Lupus nephritis is the term used when Lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluid in your body. Abnormal levels of waste can build up in the blood and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys, possibly even end-stage renal disease(ESRD)."

There are very few signs or symptoms of lupus nephritis.

• It does not cause pain in the abdomen or back.
• However, when protein leaks from the kidneys, it is eliminated from the body in the urine
• Foamy, frothy urine and getting up to urinate during the night can suggest excessive protein loss.

The loss of protein in the urine from lupus nephritis may then lead to fluid retention with weight gain and swelling (edema). This is often the first symptom noticed of lupus nephritis.

• The edema generally appears as puffiness in the feet, ankles and legs.
• This swelling will be absent in the morning, but will gradually worsen as the person walks about during the day.*

  I went to my PCP regarding some migraines I had been having for a few weeks. I assumed the migraines were from stress as we had just moved  from New Mexico back to Texas. I was feeling guilty about moving because we had uprooted our family due to my having Lupus. After my fem-pop bypass we found ourselves coming to Lubbock at least  monthly for doctors appointments. Every time I was sick I would be sent to Lubbock so it made sense to live here.  My PCP did routine labs and did not like the results of my urinalysis, she had me see my Rheumatologist the same afternoon. I didn't see the big deal; I still thought migraines was all I was dealing with. My Rheumatologist did labs and called me to come in for the results. I assumed that I was in a flare however not only was I flaring I also learned I had nephritis.

  Since I thought the appointment would just be to give me prescriptions for the flare, I went to the appointment myself. I was devastated because the hardest thing for me was going to be telling my husband and daughter. I needed to get my emotions under control so I could tell them without alarming them unnecessarily. I invited my husband to lunch and told him. We cried together and then made a game plan to tell our baby girl that I would have to have surgery again.  The next step was to stage the nephritis and we had to do that by having a kidney biopsy. We wouldn't know what we were dealing with nor how to treat it without it being staged. 

Table 1. World Health Organization (WHO) Classification System for Lupus Nephritis

Class	Designation	Comment
I	Normal	No evidence of lupus nephritis on the kidney biopsy.
II	Mesangial Nephritis	Most mild form of lupus nephritis; typically responds completely to treatment with corticosteroids.
III	Focal Proliferative Nephritis	Very early stage of more advanced lupus nephritis; typically treated with high doses of corticosteroids, with excellent outcome.
IV	Diffuse Proliferative Nephritis	Advanced stage of lupus nephritis with definite risk of loss of kidney function; typically treated with high doses of corticosteriods combined with immunosuppressive drugs.
V	Lupus Membranous Nephropathy	Generally associated with excessive protein loss and edema; typically treated with high doses of corticosteroids, with or without immunosuppressive drugs.

Once the biopsy was results came in I was staged at Class IV. Unfortunately Class IV is the most severe type. I can admit that the bottom dropped out of my world. I'm not one who goes straight to hysterics but this time I did. I tried to convince my husband to divorce me and find someone healthy, I tried to convince my then supervisor to fire me, and I went on and had a giant poor me pity party. It took a few days to work that out of my system and get on with finding out my treatments options.

  My rheumatologist who is very aggressive met with my husband and me and offered us 3 choices of treatment.

1. IV Cytoxan for a 1 year or more(Cytoxan is a chemotherapy used to treat breast cancer)

2. Oral cytoxan for 5 years

3. The last option was to do nothing aggressive, try an immunosuppressive and wait and see.

   The rheumatologist had us meet with 2 patients of his. One of the patients  had done Cytoxan treatments and was doing great. The other patient we met opted to do nothing. She was on dialysis and was waiting on a kidney transplant. I was shocked that her biggest worry was about treatment was losing her hair. 

 My husband and I discussed it and we decided to do the IV Cytoxan.  However instead of 1year of Chemo I wound up having 3 years of it. Chemo  was hard , even at the small doses (compared to cancer patients) that I was on. The first 6 months were not to bad, after that it got really hard. My hair thinned but I didn't have any significant hair loss. The worst part was nausea and fatigue and they happened about half way through the treatments. In the beginning of the treatments I would do them in the morning and then go to work in the afternoon. After about 6 months of that I would have to take the afternoon off so I could sleep. 

 The Cytoxan did it's job. It slowed the progress of the nephritis and I am now on a immunosuppressive medication called Cellcept. Cellcept is typically used for organ transplant patients to keep their bodies from rejecting the new organ. Cellcept helps suppress my immunity and helps keep my body from rejecting my kidneys. It has helped quite a lot. I've not had but one scary moment with spilling protein since I finished chemotherapy. Luckily for me IV solumedrol did the trick because I wasn't looking forward to chemo again. 

 

  

*Lupus Foundation of America

Dental Phobia

 I have a phobia of going to the dentist. Even before my Lupus diagnosis it caused me a great deal of anxiety. Now even more so since I am on coumadin for 
antiphospholipid syndrome. Now a trip to the dentist involves an appointment with a hematologist in order to wean me off coumadin prior to the appointment. 
Several visits for lab work, I need to have my PT/INR checked to make sure my blood wont be to "thin"  so I can get my dental work done. Needless to say I rarely ever 
go to the dentist. It's time consuming and I'll be honest I think it's a pain to have to do all that. 
 However in the last 3 years I've noticed that my teeth are changing. I've been on prednisone for around 17 years and it is damaging to my bones, joints and my teeth. 
There have been times when my teeth chip while I'm chewing gum! I brush my teeth and try to practice good oral hygiene, unfortunately it isn't enough anymore. 
I decided to research a little and find out how prednisone effects our teeth and mouth. I was surprised to learn that it isn't just predisone that has a negative effect on teeth.
Many of the medicines that I've either been on in the past or am still  on now like plaquenil and Cytoxan can also cause damage as well. 
 


The list below contains warnings for those of us with organ involvement. These are things we need to bring to the attention of our dental provider before we get work done.  






Certain forms of SLE organ involvement also carry dental care warnings and every procedure 
and medication must be carefully evaluated. Some areas of note are:  
 Kidney Involvement: Prescriptions for certain antibiotics (e.g. Tetracycline) or analgesics 
(e.g. Aspirin, NSAIDS) by a dentist can adversely affect kidney function. 
Liebman-Sacks Endocarditis (a form of heart involvement): Approximately 50% of 
patients with SLE suffer from this condition, yet many don't even know it. The majority 
of cases are not detected until an autopsy is preformed. Antibiotics need to be given 
before any invasive dental procedures, not just surgery, are preformed. These antibiotics 
help prevent the bacteria from the mouth from entering the bloodstream and infecting the 
vegetations from this disease that are imbedded in and around the heart. Antibiotics will 
help reduce the risks if not eliminate them completely. Infections, from dental care, can 
cause life threatening complications that are too often a reality not just a vague 
possibility.  


 Lung Involvement: Laughing Gas (also known as Nitrous Oxide) may be problematic in 
those suffering from Lupus related lung problems because of it's tendency to depress 
breathing.  


 Lupus Anticoagulant or ITP: Periodontal surgery or extraction of teeth can be 
complicated in those patients suffering from these conditions due to abnormal bleeding. 
Any invasive dental work or surgery needs to be evaluated fully and then undergone with 
caution.  


 Medications taken for Systemic and Discoid Lupus can also affect our mouths and 
require special dental care. Some oral related side effects from these medications are:  


 Anti-Convulsants: Many of these seizure and neuropathy medications can cause gum 
atrophy and bleeding which can lead to infection and decay.  


 Anti-Malarials: Plaquenil can cause a rash in the mouth or an oral lichen planus type 
reaction.  


 Immunosuppressive agents: Cytoxan, Imuran, Methotrexate, etc. act by suppressing the 
immune system and therefore may result in bacterial, fungal and other infections that can 
affect dental implants, teeth, gums, and the mouth.  


NSAIDS: Nonsteroidal Anti-Inflammatories (Advil, Motrin, Feldene, Daypro, etc.) can 
cause oral ulcers and canker sores.  
 Steroids: Prednisone and other corticosteroids increase the likelihood of bacterial and oral 
fungal infections such as thrush/candidias (yeast).  
 
Here are some helpful hints at combating these often painful mouth symptoms and the 
problems they cause:  
Dry Mouth: Salagen, Artificial Saliva Sprays, Sugar Free candies, ice chips, non-alcohol 
dental rinse/mouthwash, and drinking plenty of water and fluids throughout the day.  
Oral Sores: Orabase ointment (numbs the area and promotes healing) or Oragel (if you 
just want an anesthetic), a paste made up of Mylanta and baking soda, ice chips, baking 
soda rinse (1 tsp. baking soda per 8 oz. water), nutritional drinks such as Ensure and 
Boost to provide you with the nutrition you are missing from not eating due to 
discomfort, cool drinks and plenty of fluids to rinse out bacteria, and a hydrogen peroxide 
rinse (50 /50 mix) to prevent infection.  
 Canker Sores: Orabase Ointment (numbs the area and promotes healing), over the 
counter canker sore remedies such as Zilactin HP, keeping the area clean, applying 
protective ointment such as Vaseline, and avoiding irritating foods/beverages/makeup.  


Frequent Decay and Infections: Baking soda rinses (1 tsp baking soda per 8 oz. of water), 
various dental floss tools, electrical toothbrushes, artificial saliva substitutes (sprays and 
medications), non-alcohol rinse/mouthwash, night guards, hydrogen peroxide rinse 
(50/50 mix) and WaterPik tools. 
 Foods and substances that you should avoid while experiencing oral sores and other dental 
problems include citrus fruits, spicy foods, alcohol, caffeine, carbonated beverages, and 
foods/drinks that are acidic. These items will exacerbate your oral discomfort and can irritate 
already inflamed areas of the mouth *

The Lupus Foundation of America, Inc. would like to thank the LFA Greater Washington chapter for the use of the above lupus information.*
www.lupus.org * 

Unbelievable

Lupus is not contagious. You cannot "catch" lupus from someone or "give" lupus to someone.

 Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Having Lupus is neither better than nor worse than having Cancer. The two diseases are very different. One commonality Lupus and Cancer have is using chemotherapy as treatment. 

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is under-active; in lupus, the immune system is overactive.*

 

 

  Having Lupus isn't like having a cold, flu, or an STD. If I breathe on you, share your drink, or share body fluids you aren't going to suddenly come down with a raging case of Lupus. I can't run to my doctor’s office for a shot of rocephin in my hip and expect to be all better in 7-10 days. 

There isn't a cure for Lupus and there are very few treatments specifically for this disease. We get a hodge podge of medications and treatments from other diseases to help us fight our disease. For example Cytoxan is a chemotherapy used to treat Hodgkin’s Lymphoma, Lung cancer, breast cancer, and reproductive organ cancers. Cytoxan is also used to treat Lupus Nephritis; it can be taken orally or given intravenously. Methotrexate is another drug that is used both as a treatment for cancer and a treatment for Lupus and other autoimmune diseases. In autoimmune diseases it is used to treat inflammatory arthritis. 

 Living with Lupus is not easy but having support and understanding from family and friends helps each of us. Please don't make assumptions about or believe in the myths that are out there about Lupus. Instead find out the facts about Lupus. Visit the Lupus Foundation of America site (www.lupus.org) or the Lupus Alliance of America site (www.lupusalliance.org).  

 

www.lupus.org *  

Related articles

Medications Used in Lupus Treatment

Combating Fatigue

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.*

  

 This year I decided to change some things in my life as well as the lives of my husband and daughter.  At 42 years old I really needed to work on losing weight. My prednisone dosage has been stable for the last 2 years but unlike years past the weight didn't come off when the dosage went down. I imagine that has more to do with my getting older than anything else. Once our diets improved we were able to lose about 20lbs each. The next obvious step was exercise.

For years I've heard that exercising helps with fatigue. In my mind it didn't make any sense whatsoever. I mean how in the world was I going to find the energy to exercise when I barely had the energy to brush my teeth? For me fatigue is one of the worst parts of having Lupus.  Nothing is more depressing than having to sit down and rest after taking a shower except for resting after getting dressed.  I could never wrap my mind around how something so strenuous as exercise was going to help combat fatigue. 

 We joined a health-club that is a part of one of local hospitals. They specialize in helping people with serious and debilitating illnesses strengthen themselves. I had to have a current physical, labs, and a note from my doctor before I could join. Once all that was in place I met with a trainer, who set me up on several low impact machines and the treadmill. I've progressed from 10-15 minutes on each piece of equipment to using only 2 apparatuses for 30 minutes each! I can walk a mile on the treadmill in less that a half hour. 

 I can honestly say that I noticed the difference immediately in my energy level. When we get home from the gym I'd start dinner, toss in a load of laundry, and straighten up the living room. It was truly amazing to me that something that should drain energy actually energizes me! It's like a whole new me! Once I stopped over thinking the whole process and just went with the flow it worked. I feel better both physically and mentally since we've been working out. Even if I don't feel good enough to get a hard workout in then I just do what I can and it still makes a difference. There are times when my joints hurt really badly and I'm only able to work with the low impact equipment. But regardless of that I am still there doing something.  

 I don't have the energy of a person who doesn't have Lupus or any other autoimmune disease and I probably never will. The energy I do have is a VAST improvement of what it was even 3 months ago. I am going to continue to exercise and I hope that means I will continue to see improvement in my energy level, weight, and health overall. It isn't easy to get started but it's definitely worth it when you give it a chance.

The next step for me is light weight training. I'll keep you informed of how that progresses. 

 

 

 

 

 

 

 

 

 

 

www.lupus.org*

Related articles

The Benefits of Exercise in Lupus Management

Combating Fatigue

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.*

  

 This year I decided to change some things in my life as well as the lives of my husband and daughter.  At 42 years old I really needed to work on losing weight. My prednisone dosage has been stable for the last 2 years but unlike years past the weight didn't come off when the dosage went down. I imagine that has more to do with my getting older than anything else. Once our diets improved we were able to lose about 20lbs each. The next obvious step was exercise.

For years I've heard that exercising helps with fatigue. In my mind it didn't make any sense whatsoever. I mean how in the world was I going to find the energy to exercise when I barely had the energy to brush my teeth? For me fatigue is one of the worst parts of having Lupus.  Nothing is more depressing than having to sit down and rest after taking a shower except for resting after getting dressed.  I could never wrap my mind around how something so strenuous as exercise was going to help combat fatigue. 

 We joined a health-club that is a part of one of local hospitals. They specialize in helping people with serious and debilitating illnesses strengthen themselves. I had to have a current physical, labs, and a note from my doctor before I could join. Once all that was in place I met with a trainer, who set me up on several low impact machines and the treadmill. I've progressed from 10-15 minutes on each piece of equipment to using only 2 apparatuses for 30 minutes each! I can walk a mile on the treadmill in less that a half hour. 

 I can honestly say that I noticed the difference immediately in my energy level. When we get home from the gym I'd start dinner, toss in a load of laundry, and straighten up the living room. It was truly amazing to me that something that should drain energy actually energizes me! It's like a whole new me! Once I stopped over thinking the whole process and just went with the flow it worked. I feel better both physically and mentally since we've been working out. Even if I don't feel good enough to get a hard workout in then I just do what I can and it still makes a difference. There are times when my joints hurt really badly and I'm only able to work with the low impact equipment. But regardless of that I am still there doing something.  

 I don't have the energy of a person who doesn't have Lupus or any other autoimmune disease and I probably never will. The energy I do have is a VAST improvement of what it was even 3 months ago. I am going to continue to exercise and I hope that means I will continue to see improvement in my energy level, weight, and health overall. It isn't easy to get started but it's definitely worth it when you give it a chance.

The next step for me is light weight training. I'll keep you informed of how that progresses. 

 

 

 

 

 

 

 

 

 

 

www.lupus.org*

Related articles

The Benefits of Exercise in Lupus Management

Laugh A Little More

 Today I'm grateful being able to laugh! No matter how bad I feel or tough times are; I'm always able to laugh.  During the best and worst times of my life I can say that one of the things I've had is my sense of humor. 

  When I get nervous I laugh uncontrollably. It used to drive my husband crazy ! We bought a car when our daughter was about 3 months old. I dented it within 2 or 3 weeks of having it. I was trying to tell him what happened but unfortunately I couldn't stop laughing. So I thought I'd show him the dent instead.

 Let me just say, when your wife is giggling like a dingy 15 year old and showing you a dent in the front of your 2 week old new car, it doesn't go over well. In fact he  thought I was laughing at the fact that I dented the car. It took a couple of days for me to get him to understand that because I was nervous and scared I was giggling and laughing. It's a nervous reaction that I have when I know I'm in big trouble. It was laugh or cry and I hate crying.

 The more nerv0us or unsure of the situation that I feel my loved ones are the more I laugh and joke. I want to try to either put them at ease or give them something else to concentrate on.   When we found out about the clot in my right femoral-popliteal artery we were not sure what to expect. We honestly didn't know if the doctors were going to be able to save my leg or not. Right away I told Larry, my husband, that if I had to have become and amputee I was going to get a bunch of rub on tattoo's . I needed to replace the ankle tattoo I was going to be losing when they amputated my leg.It made him laugh and took his mind off my surgery for a bit; he knew I was being silly. It took him a few minutes to catch it on to the fact that my ankle tattoo is on my left leg and not my right leg. Needless to say my leg was saved thanks to the fem-pop bypass and my sense of humor and my tattoos are still in tact.

Laughter is the one of the best medicines for me. I feel as long as I retain my sense of humor there is nothing I can't handle. Hearing those close to me laugh with me is even better. That's when I feel the magic really working.  I'm not afraid to make fun of myself especially when I am being to serious. 

Laughing means I'm having fun and enjoying life.  When I'm enjoying life it means I'm living not just existing. Live your live. Laugh and have fun today! Having fun doesn't mean you don't take Lupus seriously. It just means that you choose to do more with your life than worry over something you can't control.

Laughter is a powerful antidote to stress, pain, and conflict. Nothing works faster or more dependably to bring your mind and body back into balance than a good laugh. Humor lightens your burdens, inspires hopes, connects you to others, and keeps you grounded, focused, and alert.

Humor is infectious. The sound of roaring laughter is far more contagious than any cough, sniffle, or sneeze. When laughter is shared, it binds people together and increases happiness and intimacy. Laughter also triggers healthy physical changes in the body. Humor and laughter strengthen your immune system, boost your energy, diminish pain, and protect you from the damaging effects of stress. Best of all, this priceless medicine is fun, free, and easy to use.*

http://www.helpguide.org/life/humor_laughter_health.htm*

Music Is My Therapy

 Today I'm thankful for music! Regardless of whether I'm happy, sad, or stressed I love music. When I left home at 17 years old I had $200 in my pocket, a suitcase, and case of cassettes (yes I said cassettes). They were my comfort when I was so far away from everything and everyone I knew. I'd pop in Led Zepplin, U2, The Doors, Run DMC, or the Beastie Boys and not worry about anything for that moment.

 Now I've moved on to CD's and downloads but the results are still the same for me. I can turn it up and tune everything else out for a bit. When I'm going thru IV treatments; whether they are chemo, iron, or steroids I put on my headphones and crank up the music. It makes the time I have to spend in that chair go by so much faster.

 When fatigue is riding me and Lupus is winning the day music is what helps ease the aches and pains. If I don't have any get up go I have a soundtrack for that. It consists of music that makes me feel good, aggressive, and like I can take over the world even if I can't at that moment. 

Music is my chosen form of therapy. It is definitely a stress reliever for me. I can go for a drive and turn up Pantera, Nonpoint, Metallica, or Disturbed and let it all go! I feel better when my drive is over.  I was also thrilled to find some research on music therapy and chronic illness as well.

Music therapy uses music to address a number of emotional, cognitive and social issues in people of all ages. It is often used with people who have disabilities or illness, but the healing benefits of music can be enjoyed by anyone and at any age. The process of making and listening to music can provide a channel for communication and expression that may go beyond what is easily expressed in words.

Music Therapy is used for many different issues, from stress relief to mental, emotional and behavioral problems. It has been shown to help treat depression and anxiety, and is often used to help elderly clients deal with memory loss associated with diseases such as Alzheimer's Disease and Dementia. Music Therapy is also used to relieve pain, especially related to labor or terminal illness.*

 http://www.unh.edu/health-services/ohep/holistic_music.html *

Ushering In The Holidays

  Halloween marks the beginning of the Holiday Season for me. Whether you have Lupus or not this time of year can be very stressful.  It's really hard to find a balance between work, play, obligations, and rest that work for us. All of it can become completely overwhelming and stressful.  When I get overwhelmed I either shutdown or lash out and I do not what do either of those things during the Holidays.

 Stress and Lupus do not mix. Stress can manifest itself in many different ways in someone who has Lupus; insomnia, pain, fatigue, tension, over-eating, and/or a flare. The Holidays should not be stress-inducing events for any of us. In order to avoid stress and feeling like I'm drowning in the holidays I've learned to stop putting undue pressure on myself and not set myself up for failure. It hasn't been easy for me to say "No" to additional things especially around this time of year. 

 To keep things in perspective I like to take stock of the things my life I have to be grateful or thankful for. My "gratefuls" help me keep grounded. They also reinforce that there is more to life than Lupus, stress, and the holidays are more than obligations. I take one day at a time and find something to enjoy about each one of them.

 

 

 

Fat, Bald, Or Dead

 

Some of the medications we take to treat Lupus are awful. Prednisone is a treatment a first-line treatment used for most of us. It works fast and its effective; however it has a lot of side effects. None of the side effects are easy to deal with and I have had almost every one of them at one time or another. It is absolutely no fun being a woman over 30 years old and having cystic acne like a 14 or 15 year old. Being on a dosage so high that my stomach growling in the middle of the night woke my HUSBAND up as well. I was so very miserable. The weight settled in my face and I had the moon baby cheeks and a basketball head. When I smiled I had no eyes all you could see was my teeth and my cheeks.

 I was so swollen from edema (water retention) that my hands looked like they weight 30lbs each. I wasn't able to take off my wedding ring for about 3 years.  On top of the 80mgs of steroids per day I was starting Cytoxan as a treatment for my kidneys. I thought I would lose my hair so I cut most of it off so I would not be as upset if I wound up bald. My self-esteem took a huge hit during that 3 year period. 

  Prednisone Pros:

• It is fast acting
• decreases inflammation in joints and organs
•  suppresses our over active immune systems quickly
• IV steroids can help control flares
• steroid injections can be injected directly into muscles and joints for relief

Prednisone Cons:

 

• insomnia
• steroid-induced diabetes
• acne
• facial hair
• mood swings
• Increased appetite and weight gain
• bruising

 There are patients out there that  will not take life saving medications; even on a  short-term basis; because they do not want to gain weight.  Some have gone as far as to lie to their doctors about taking the medications just to get the doctor off their backs.  Recently I met a person with diabetes that stopped taking her insulin for 3 months because she said it was thinning her hair out. Her blood sugars were out of control and she refused to take her medications because of her hair! I could not comprehend that she was okay with possibly losing a limb or her vision but not her hair?  

 Before I started chemo I met a patient who had refused to take Cytoxan because of the possibility of hair loss. She was very surprised that I had decided to take chemo and even tried to talk me out of it.  Meanwhile she was on dialysis and trying to find a match so she could have a kidney transplant. I kept thinking " my hair can grow back but my kidney can't!"

 We all can be a bit vain about ourselves in some form or fashion. I definitely understand that for instance I love my big red lips! The one thing I know is that no amount of vanity is worth my life. I may not like it but I'm willing to lose my hair, gain weight, and be covered in zits again if it means that I will eventually be over a flare and back to my normal self in a few months.  Is being thin and having a hair worth YOUR life? 

The weight gained from prednisone can be lost. If your hair thins or falls out buy a wig or extensions. The things you can't get back are  lung and/or kidney functions. Once they're gone they're gone.  Make informed decisions regarding your treatments and always talk to your physician. If it concerns you then they need to know about it.   It isn't fair to you OR to the doctor if you are tying their hands by not telling them the truth. 

I wont lie and say this wasn't a rough time period for me. It was a struggle but there was light at the end of the tunnel. If I could go thru this and feel better then it was worth it. It was an easy choice for me:  steroid fat trumped being dead.  Talk to a therapist about it and/or join a support group. There are people that are just like you out there that can talk to you on a level that you understand. We've gone thru what you have gone thru.

The picture below is during my first chemo treatment. They took pictures for patient charts for ID purposes. Since I was also an employee as soon as I lost the steroid weight I made them take another picture ....vanity. 

 

17 Years Ago

 A September day 17 years ago I was diagnosed with Lupus. I finally knew what was wrong with me; why I had been sick and not feeling well for at least the 3 years before. However I didn't have much information on the disease itself and of course this was before the time of Google and WebMD.

  Since I am nothing if not resourceful and I worked for a very large physician practice I borrowed their books and journals and read as much as I could. When it was too clinical and  I didn't understand what I was reading I hounded the doctors to explain them to me in great detail. I don't like surprises and I like to know what to expect good or bad.

 One of the first things I read was the results of a study that people said  with Lupus were more likely to be depressed, less likely to be able to hold a job, or have a relationship. That really pissed me off! I kept thinking does this mean I have to quit my job, divorce my husband, and curl up on my bed in the dark now? According to this article; because I have Lupus I had no worth as a person. At the time I was appalled. My experience with Lupus up to that point wasn't that bad and I couldn't even begin to imagine how bad it could get.  In time I came to the realization that there may be many of my fellow Lupies that might feel this way. But more importantly I came to understand why they could feel this way.

  Having Lupus is hard there is no denying that. The constant pain is very trying and  saying it hurts is an understatement. The physical fatigue is almost indescribable and the mental fatigue is much worse. The fact that it can involve all your organs, joints, and blood doesn't make it any easier to deal with and it takes a lot of energy to fight it every day. There are things that happen to me that I can't explain or have no point of reference for. However I continue to fight every single day. It isn't in me to give up or give into anything. 

 I didn't ask for Lupus (I can't imagine anyone else did either) and I not going to let it take over my life either. I am not any less worthy of having the same happiness or success as anyone else because I have a disease. For me it is about not letting Lupus win. It's been more than 15 years since I read that study and when I think about it; it still bothers me. Now I have a much different experience with Lupus. I've been thru hell and back with this disease and I'm happy to say I am still standing. I'm even happier to say I'm not standing alone; my husband, daughter, friends, and co-workers stand along with me.

 

 

Subtle Differences

 Over the last couple of months I have not been myself. I haven't gone shopping, got my nails done, I rarely write, and I haven't gone out with my husband. Lately I've come home from work and put on my jammies. On the weekends I've been isolating myself from the outside world. I haven't been going anywhere unless I had plenty of advance notice to get myself prepared. I just haven't been myself The changes in me were so subtle that I didn't notice for months that I was depressed. 

  As soon as I recognized that it was depression; I made an appointment with my PCP. We talked and came up with a treatment plan that should work for me. For me knowing is half the battle and I do I feel better knowing what the problem is.  When I know what I am dealing with I can start to formulate a plan.

 Part of my plan is to push myself out of the comfort zone I've been in these last few months. I got out and went grocery shopping yesterday with my husband. Of course I absolutely had to chose one of the busiest shopping days of the year here to go to Walmart. It is the weekend before school starts and this is a college town.  Needless to say it was a fight to get thru the throngs of co-eds and their parents; but we made it thru the madness.

 I also got back into the kitchen and started cooking. When I cook we tend to eat much healthier. I've made meals for the next week. It saves time and energy during the week. This will leave some time for other things in the evening. Hopefully working out will be one of those things.

 Depression isn't easy and I am fighting it tooth and nail. I can't wait to get back to being me!  I'm on my way back.

Life with lupus—with symptoms that come and go, disease flares and remissions, and the uncertainty of what each day will bring—can be difficult and challenging. It is normal to experience feelings of unhappiness, frustration, anger, or sadness when you live with a chronic illness such as lupus. And it is normal to grieve for the loss of the life you had before lupus. As you learn more about lupus, and how to adjust and adapt to necessary life changes, these sorts of negative feelings will lessen.

Sometimes, though, negative feelings can become overwhelming and long-lasting. How do you know if and when to seek professional help for these feelings? In this fact sheet, we will try to help you understand the difference between temporary mood swings and long-lasting feelings that signal a more serious illness, called clinical depression.*

www.lupus.org *

 

Think Before You Speak

Happily, after battling kidney failure, blood clots and autoimmune disease, Cannon's health is back on track. "The doctor says I am cured," says the America's Got Talent host.

His new diet, which required him to cut out fried and processed foods, along with proper rest and a 30-45 minute daily boxing workout, is pumping him with much needed energy – to chase his twins around the house. *

Nick Cannon has been cured from an incurable disease and best of all he did it by eating right and exercising. Unfortunately this is exactly the kind of misinformation about Lupus that I hate to see being quoted, printed, and spread around.  If "curing" Lupus was that easy, why wouldn't all 1.5 million of us take up boxing and stop eating processed foods?  Had I known it was that simple I could have skipped 17 years of doctors appointments,  chemotherapy, biopsies, surgeries, medications, and monthy lab work. Instead of spending thousands of dollars on copays and deductibles I could have would have hired a personal trainer instead!  

 This is probably one the most irresponsible statement I've heard credited regarding Lupus thus far and to make matters worse, it was said by someone who has Lupus! It creates false hope in those who have Lupus and are not educated in the disease. Also it feeds into the myth that "Lupus isn't that bad", " You don't look sick",  and "At least it's not cancer". Diet and exercise are wonderful and I do not disagree that we need those, whether we have Lupus or not. However I know from personal experience  that it isn't all we need to stay alive and keep this disease at bay.

 To say that I'm furious with how Mr. Cannon minimized this disease is an understatement.  Lupus is a very serious, frustrating, complicated, and at times life threatening disease. Having Lupus for almost 17 years; I've experienced this disease first hand. I've drank juices, tried vitamins, natural supplements, and worked out 2 times per day and I still have Lupus. Nick, do the rest of us who aren't in denial about Lupus; think before you speak.  

Inflammationof the nephrons, the structures within the kidneysthat filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body. Abnormal levels of waste can build up in the blood, and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys and possibly end-stage renal disease (ESRD). People with ESRD need regular filtering of their body’s waste done by a machine (dialysis) or a kidney transplant so that at least one kidney is working properly.

Lupus nephritis most often develops within the first five years after the symptoms of lupus start, and usually affects people between the ages of 20 and 40. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment. Because there are so few symptoms of kidney disease, significant damage to your kidneys can happen before you are diagnosed with lupus.

In the early stages of lupus nephritis, there are very few signs that anything is wrong. Often the first symptoms of lupus nephritis are weight gain and puffiness in your feet, ankles, legs, hands, and/or eyelids. This swelling often becomes worse throughout the day. Also, your urine may be foamy or frothy, or have a red color. Often the first signs of lupus nephritis show up in clinical laboratory tests on the urine. That is why testing your urine is so important.

Nephrologists are the physicians who treat the renal system. The tests they will use to diagnose lupus nephritis are: collection of urine, usually over a 24-hour period; blood tests; and often, a kidney biopsy.**

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

http://www.people.com/people/article/0,,20601960,00.html *

 www.lupus.org **

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Marijuana an Alternative Treatment

I've been researching alternative treatments for a while now as I am interested in finding treatments and medications that don't further damage our bodies. For example I have severe bone and joint damage due to long-term steroid use. Unfortunately I also have Antiphospholipid Syndrome and Class IV Nephritis which mean I am unable to take NSAID's and other anti-inflammatory drugs that would help alleviate the pain I am in daily. For pain relief I only have almost no options other than narcotic pain medications. The fact is the pain medications ease the pain but they do not take it away.  I've been researching things like acupuncture, massage, and water therapy to work in conjunction with the pain regime I'm on.  There is one drug that keeps coming up over and over in regards to pain control and that drug is  marijuana. There are quite a few physicians and patients who believe it can be useful  in treating Lupus. 

In researching it's use for pain control in Lupus one of the first things I've found is that there is ZERO information available on any of the official Lupus websites.  The second thing I've found is that there really isn't much  scientific information available on risks and benefits of using medical marijuana in the treating Lupus but there is information available on its use by cancer patients.  

 Here are some facts that are well known about many of the drugs used to treat Lupus. They can have very serious side effects and cause some of the following:

• Weight Gain
• Weight Loss
• Bone/joint damage
• Diabetes
• Kidney Disease
• Thinning and/or Hair Loss
• Nausea
• Vomiting
• Vision Issues
• Cancer

 Marijuana has been used to help with some of these side effects in other illnesses such as cancer. Some of the reported positives are:

•  The effects from smoking marijuana are  felt as soon as THC enters the blood stream and can last up to 4 hours
• THC causes dopamine release which produces euphoria
• Increases appetite
• Can alleviate nausea
• Helps with pain

There are several drawbacks to smoking marijuana; loss of lung function has been reported as well as impairing short-term memory and loss of concentration and coordination. There is also the risk of the person using marijuana will be ostracized by those who do not agree with it's use. There are many who will still treat the drug and the user as doing something illegal despite the fact it may be legal to use in that state. Then the risk that I've read about is addiction and it being a "gateway" drug. In my opinion the narcotic pain medications many of us take have a risk of addiction as well as the risk of being a gateway to another drug. These are  synthetic-opioid based medications and it wouldn't be a huge jump to move on to the real thing. 

The use of marijuana is controversial even in states where the use of it medicinally is  legal. There doesn't seem to be any consensus among physicians and/or scientists as to the efficacy of the drug and even as  State Governments  legalize the use marijuana the Federal Government still considers it illegal.  Tetrahydrocannibol (THC) the central psychoactive chemical in marijuana seems to cause the most worry . There are growers who are now working on plants that do not have THC will control the pain and side effects just like the original marijuana. Would less or no THC be received better by the public, law enforcement, and government officials? That truly remains to be seen.  

 

What I am most interested in is whether or not it can help ease the burden of Lupus and other auto-immune diseases. We need some long term studies to see if it helps with some of the issues we have due to Lupus. If it is proven to be a true medicinal plant and available without the threat of arrest I'd be all for it. However it is important to remember that it isn't a cure all. It would still need to be taken in conjunction with our maintenance medications.  Just for the record it is currently not legal in my state (Texas) and I do not partake as it can result the loss of employment for me. I'd love to see other thoughts on the subject.

 

 

 

 

 

 

 

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Insomnia and anxiety

Insomnia is the most common sleep disorder.  It is a problem initiating or maintaining sleep or the experience of non-restorative sleep that impacts daytime functioning in some way.  Insomnia is typically associated with fatigue (not necessarily sleepiness). Insomnia is also associated with irritability, negative mood and pain.  Typically insomnia symptoms that occur 3 nights per week for at least a month is consider clinically significant and should be  evaluated by your doctor or sleep specialist.  Chronic insomnia has been shown to be a risk factor for many chronic diseases. Fortunately, there are good treatments for insomnia. The Society of Behavioral Sleep Medicine’s website is a good source of information about insomnia, how best to treat it and how to find a certified specialist.

Please note that many sleep disorders centers focus primarily on treating sleep apnea.  You should ask if they have a Behavioral Sleep Medicine Specialist on staff to evaluate and treat chronic insomnia. 

 

I consider myself  a very strong-willed person and I can take a lot before I reach my breaking point.  Apparantley 4 or 5 days of very little sleep is along with lots of stress at work is my breaking point.  When I am under a lot of stress I tend to compartmentalize my issues until I have time to deal with them. Compartmentalizing is something I am very good at doing. It enables me to deal with one situation and problem at a time. However the down side of  compartmentaliztion is that eventually all the issues you put off tend to catch up and crash down upon all at once.

It all caught up with me last night. If I'm honest the crash had been building for the last week or so. Last night I literally could not breath and it felt as if the world was closing in around me and suffocating me. I was unable to relax; even my deep breathing exercises weren't helping me. The only way to describe this feeling out of control. Not being in control is not something I'm good at and that makes the attack even worse.  Intellectually I know that if I can just slow down and stop being concerned with being out of control, the panic will subside sooner and the attack will end quicker. However accomplishing that is not as easy as I would like it to be.

 Since the deep breathing wasn't helping the next step was to get in the shower. The shower has a very calming effect on me and usually gives me quite a bit of clarity when things are a bit muddled in my mind. This did help quite a bit. It took another hour or so to calm completely down and get myself back under "control". 

 This attack stemmed from pressure and expectations I put on myself. I have a number of things around the house that need to be taken care of as well as a number of things I need to get taken care of for work. So for this weekend I am only dealing with things that need to be done around the house. I really wish I could have worked this out yesterday. Then I could have had a great night's sleep and no panic attack at all.  Like most over-achievers, I tend to get in my own way more than anyone else ever could.

Gratefuls Part 2

 The last couple of weeks have been very hard both physically and emotionally and not just for me but also for several of my friends.  I've only slept about 3 hours per night for the last few nights. It makes for very long exhausting days.  Times like these are when I like to think back at all the things I am thankful for and grateful for.

• My favorite radio station- 94.5 KFMX. They keep laughing all morning and rocking all day.
• The ability to laugh at myself when I drive my employee to the Walgreen's parking lot instead of to the restaurant on the next block for lunch.
• The wonderful gifts my daughter picks out for me
• The way my husband knows I need him without me having to say a word
• Working - it means I'm useful and it keeps my mind busy
• Kindle Fire and my love of reading
• Exercise (didn't see that one coming)
• The ability to apologize when I am wrong
• Freedom of speech
• 2012 Olympics
• Loving myself because it allows me to love others
• Accepting myself , the good, bad, and ugly parts of me

My list of gratefuls keeps me grounded and helps me not become a whiny person. Whether you are having a bad day or not; everyone needs a list of gratefuls. It can do wonders for you day when you think of all the wonderful things that you're happy and/or grateful for.

Foward Thinking

 The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before.

It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:

• follow the instructions of their physician,
• take their medication(s) as prescribed, and
• know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.

New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.*

Once upon a time I came very close to giving up on life and giving in to Lupus.It seemed that everything that could go wrong with my body did. I never tried to show it on the outside but on the inside I was scared to death. Everything that could go wrong with my body did all at the same time.  I wrote down things that I couldn't say out loud to my family without breaking down. I needed them to know how much I loved them and wanted them to live full and happy lives if I didn't make it.

For my daughter, I wrote down things that every girl should know.Things like how to put on make up, how to know if you have to much perfume on, to never leave the house looking like you just rolled out of bed, and how to know if you were in love. I needed her to know these things in case I wasn't around to go thru them with her. No matter how good a father my husband is he isn't a mom. I also gave my husband my blessing to marry again. I tried to get him to promise me he would because I wanted him to be happy and not alone. All the things I could never say out loud I told him in my letters.  

 These aren't things a 28 year old should ever have to contemplate about much less deal with. However because of the severity of my Lupus I had to face  my mortality very early on. It was also during this time that I learned to enjoy each and every day no matter what it brings. Finally I learned that you should never ever wait to tell someone how you feel about them. This is when I decided that no matter how bad I was feeling on any given day I can and will find something to be thankful for. I love life and I have a lot to live                                              for. 

  Now the I live in the present and look forward to the future, I can't wait for my 21 year old daughter to get married and give us grand babies to spoil. I am excited about growing old with my husband and enjoying the our lives together. I look forward to simple things, like playing with our dog(s), drinking coffee, listening to my favorite radio station, spending quiet nights with my husband,  teasing my daughter, going to work, and reading a good book.

I still have Lupus and I'll have it for the rest of my life.  But I also have hope, joy, love, and peace in my life and these are the things that matter the most to me. Once upon a time I came very close to giving up but I didn't. I deserved more than that and so did my family.

www.lupus.org *

The Big Bad D Word

     Depression 

   Being diagnosed with Lupuswas a pretty traumatic time for me as well as for many others. You do realize that your life will change however you have NO idea how much. Your energy levels, moods, medications, lifestyle, and many other things change with the ebb and flow of Lupus. Depression can happen with all the changes that we go thru.

 My life did changed tremendously after being diagnosed with Lupus. There were many changes I recognized and understood and so many more changes that slipped under the radar for many years.  For starters I had terrible  mood swings and horrible anger issues. I didn't know where they came from or why I was having them just that they made my family and co workers miserable. I learned years later that the mood swings and anger were a part of depression. The depression was brought by the fact that I had not dealt some of the changes in the life I had planned before being diagnosed with Lupus.

 I accepted the disease  but not the changes it made in my life. I didn't want to deal with it not being safe for me to have more children, not being able to play in the sun, not being spontantenous.  When I was diagnosed with the big bad D word (depression) I didn't understand how I could be depressed. I am a very positive person and I don't let anything get me down for too long. That didn't equal the picture of depression I had in my head.  In the past when I thought that being depressed meant you acted like a morose bored teenager; I had never been so wrong.

Psychological and Physical Symptoms of Clinical Depression *

Feelings of helplessness or hopelessness Sadness Crying (often without reason) Insomnia or restless sleep, or sleeping too much Changes in appetite leading to weight loss or weight gain Feelings of uneasiness, anxiety, or irritability Feelings of guilt or regret Lowered self-esteem or feelings of worthlessness

Inability to concentrate or difficulty thinking Diminished memory and recall Indecisiveness Lack of interest in things formerly enjoyed Lack of energy General slowing and clouding of mental functions Diminished sexual interest and/or perfor­mance Recurrent thoughts of death or suicide

 

Facts About Clinical Depression and Lupus *

• Between 15 and 60 percent of people with a chronic illness will experience clinical depression.
• Clinical depression may be a result of the ways in which lupus physically affects your body.
• Some of the medicines to treat lupus—especially corticosteroids such as prednisone (and at higher doses of 20 mg or more)—play a role in causing clinical depression.
• Clinical depression may be a result of the continuous series of emotional and psychological stressors associated with living with a chronic illness.
• Clinical depression may be a result of neurologic problems or experiences unrelated to lupus.
• Clinical depression also produces anxiety, which may aggravate physical symptoms (headache, stomach pain, etc.).
• Two common feelings associated with clinical depression are hopelessness and helplessness. People who feel hopeless believe that their distressing symptoms may never improve. People who feel helpless believe they are beyond help—that no one cares enough to help them or could succeed in helping, even if they tried.

  My PCP prescribed an anti-depressant for me and that helped but it didn't "cure" me. The hard part for me was to begin dealing with some of the issues I refused to think about or talk about. Once I was honest with myself it made things a bit easier to deal with. Talking about my issues and getting them out in the open helps me more than medication does. It is one the reasons I choose to write. Writing is a positive way for me to get my feelings out; like a cleanse only a lot less messy.

Depression will always be something I'll have to deal with. I've learned some tools to help me deal with it more effectively and in a positive manner. No more screaming fits for me. There are many different ways to help cope us with depression. The coping mechanisms I use may not work for everyone but there so many more ways to cope with Lupus and depression.

WHAT CAN YOU DO?

• Therapy
• Anti depressants
• Exercise
• Finding a support system
• Controlling the pain
• Improving sleep habits
• Maintaining friendships

 

 www.lupus.org *

Willingly Killing Me

 I have been tobacco free for 12 years. I smoked off and on from the time I was 12 years old up to when I was 30 years old.  When I first started smoking (mostly choking ) in 6th grade I thought I was tough. At that age having a cigarette was a way for me to exert some control over my life as well as show the world how "tough" I was.  In my late teens cigarettes were largely an accessory for the weekend and of course I thought I looked mature and cool.  In my twenties cigarettes were a stress reliever. I loved having a cigarette with a cup of coffee or a glass of wine and definetely after a stressful day.  My pack was the first thing reached for when I got off work. Working in healthcare all of my adult life  I knew smoking wasn't good for me but I wasn't interested in quitting.  

 When I was diagnosed with Lupus of course I was told that I needed to quit smoking. My rheumatologist went over the risks with me but I wasn't listening to him.  I felt that I was not in control of my life again. I reverted back to being a 12 year old girl and continued smoking to show that I was the "boss of me"!  Smoking only made a bad situation worse. Over a few years time I developed Raynaud's and an arterial clot.  When I had the fem-pop bypass my surgeon explained that smoking could and would continue to constrict my blood vessels. It would mean slow healing and possibly the development of another clot.

 Two years later I developed Class 4 nephritis. I continued to smoke until my rheumatologist said to me" You have enough things killing you; why are you WILLING adding one more?" I'd never thought of smoking in those terms and it was a real eye opener. I prided myself on being strong and fighting for my life but in actuality my stubborn stupidity was killing me! 

 Finally that was enough for me to put the cigarettes down. I quit cold turkey. I am not gonna lie, even after 12 years sometimes I still want a cigarette when I get super stressed or upset. But I have resisted the urge to pick up cigarettes again because my health is more important than temporary stress relief.  I've also learned that by not smoking I am now really controlling my life.

 The following list pairs what we know about lupus with the known effects of smoking:

• People with lupus are more susceptible to infections, with respiratory infections among the most common.
• Smoking cigarettes increases the risk of pneumococcal pneumonia and chronic bronchitis. Researchers report that passive smoking, or regular exposure to secondhand smoke, also raises the risk of having this type of pneumonia. Smoking or hanging around others who do may increase your risk of pneumococcal pneumonia.
• People with lupus on long-term moderate (11-40mg/day) to high (41-100mg/day) doses of prednisone have been found to develop heart disease (atherosclerosis) 20 to 30 years earlier than the general population. It's not uncommon for angina (heart muscle pain) and even heart attacks to occur in lupus patients as young as 30 or 40 years of age.
• Smoking increases the risk of coronary artery disease. If you smoke and have lupus you greatly increase the risk of damaging your heart.
• Lupus can affect the blood vessels and circulation in a variety of ways. Raynaud's disease is common in people with lupus and when active, results in poor circulation to the hands and feet. Lupus vasculitis can cause narrowing of blood vessels and reduced blood flow to tissues and organs. Antiphospholipid antibodies may increase the risk of serious blood clots and stroke.
• Smoking narrows blood vessels and worsens peripheral vascular disease (poor blood supply).
• Smoking contributes to blood vessel spasms and can magnify the effect of Raynaud's making a mild case worse, and could result in severe damage to fingers and toes.
  • Smoking increases the risk of stroke.
• Kidney disease in lupus can result in hypertension.
  • A study at Stanford University of patients with lupus nephritis found that those who smoked progressed to end stage kidney disease far more quickly than did non-smokers (145 months vs. 273 months).
  • Smoking contributes to elevated blood pressure which increases the risk of stroke and worsening kidney disease.
• People with lupus can also develop diabetes and thereby be prone to poor wound healing.
  • Smoking slows wound healing.
  • Smoking increases the risk of heart attack in diabetics (insulin or non-insulin dependent).
• Avascular necrosis of bone can develop in lupus and may require surgery.
  • Smoking slows recovery from illness and surgery.
  • Smoking slows bone healing.
• Heartburn is found in 10 to fifty percent of people with lupus.
  • Smoking has harmful effects on all parts of the digestive system, contributing to such common disorders as heartburn. National Institute of Diabetes and Digestive and Kidney Disease - Smoking and Your Digestive System.
• Many of the medications used to alleviate symptoms of lupus are broken down by the liver. Lupus can affect the liver.
  • Smoking affects the liver, too, by changing the way it metabolizes drugs and alcohol. In some cases, this may influence the dose of medication necessary to treat an illness.
• Lupus can cause skin disease, which may be effectively treated with antimalarial medications.
  • Smoking has been shown to interfere with the benefits of hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) for the skin disease of patients with SLE.
  • A study at the University of Minnesota of patients with discoid lupus erythematosus (DLE) found that smoking was more prevalent in people with DLE compared to those with other skin diseases and those in the general population. The researchers proposed that smoking may be a risk factor for development of DLE.
  • Studies conducted at Johns Hopkins University School of Medicine have found lupus skin disease is more active in smokers than non-smokers.
• Lupus can cause hair loss and other skin symptoms.
  • Smoking has been associated with skin diseases and studies in mice indicate a link may exist between smoking and both hair loss and premature gray hair.
• Medications used in the treatment of lupus: prednisone, excessive thyroid hormones, anticonvulsants, antacids containing aluminum, and heparin increase the risk for fragile bones or osteoporosis.
  • Smoking magnifies the risk for osteoporosis.

In addition, over the years research has consistently shown that cigarette smoking causes skin wrinkling that could make smokers appear prematurely old.*

www.lupus.org *

My Truth About Lupus Fatigue

 Sometimes no matter how much rest I get, it still isn't enough. Fatigue, especially when you've rested is hard to accept and very hard to explain to someone who does not have a chronic illness.

Imagine having to pace yourself... just to get out of bed, planning for a half hour or more on how to get to the restroom and back, having to rest because you took a shower, falling asleep after having coffee.  

 The extreme fatigue is one of the worst  things about having Lupus for me. If I am tired I want it to be for a reason. I want to have accomplished something; not just be having a bad Lupus day. I always describe the fatigue as like walking thru the deep end of the swimming pool fully dressed with a parka on.

 Depression, anxiety, lack of exercise,and smoking are believed to be related to Lupus fatigue. There are times when the fatigue hits me and I feel weighted down by life itself. In order to break the cycle of depression and/or anxiety that comes with fatigue I depend very heavily on my support system. My husband, daughter, my pup(s), and my friends including our wonderful support group help me get thru the rough times.

 I try to push myself a little bit more everyday, when I'm feeling this way. every little bit helps to get me out of the rut. Medication and exercise help but having a support system makes ALL the difference in the world.  If you don't have one, I strongly suggest you find one. Support without judgement is a wonderful thing.

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

In addition, poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise have all been found to be related to lupus fatigue. Before the physician can conclude that fatigue is related to these factors, any "treatable" causes of fatigue (for example, anemia, kidney failure, or hypothyroidism) need to be ruled out.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group have been found to help. By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.

Tips to Help You Manage Fatigue

• Alternate activities with periods of rest throughout the day.
• Establish good sleep patterns.
• Plan ahead; for example, shop for gifts throughout the year.
• Prepare meals in advance.
• Eat a healthy diet and exercise regularly.
• Stop smoking if you smoke.*

www.lupus.org *

Related articles

The Benefits of Exercise in Lupus Management

You Don't Look Sick

 

There is nothing more irritating and/or frustrating for someone with a chronic illness to hear than "You don't look sick". The comment is so prevalent for those of us with Lupus and other autoimmune diseases that a website with the name www.butyoudontlooksick.com was created by a person with Lupus. The website is used to educate people about Lupus. I think they've taken something negative and made it a positive.  For many of us with chronic illnesses "you don't look sick" isn't always taken as a compliment most especially when it's said with a "prove your sick" attitude. After all we don't look sick enough to be disabled, to have a handicapped sticker, to not be able to work, to not get out of bed, and the list goes on and on. Well you can't tell if a person is sick by looking at them anymore than you can tell if a person is nice, kind, loving, honest, mean, dishonest, or evil.

 That old saying about not judging a book by its cover really holds true for people with Lupus. For example the picture of my husband and I was taken in the midst of the worst flare I'd ever had. I could barely walk and I couldn't wear shoes. I had to wear little cloth slippers because of an unhealed ulcer on my baby toe. A few days after this picture was taken I was in a wheelchair. A day or so after that I was in CICU awaiting a femoral-popliteal bypass on my right leg. My doctor found a clot in my femoral-popliteal artery. The ulcer on my toe wouldn't heal because I had very little or no circulation in that leg. As you can see looks can be deceiving.

   When you don't feel good you don't usually care what you look like - you just want to feel better. The next time you meet someone with Lupus or another chronic illness keep in mind that no matter how the great the person looks on the outside the inside of them could be train wreck. Keep that in mind before you judge them as not sick enough based on the way they look.

 

Stupid Things People Say

 We've all played the "open mouth insert foot" game a time or two in our lives. When people give advice to anyone with a chronic illness; they seem to take the game to a whole new level. Some of the things that those of us Lupus have heard are:

• It's not cancer
• Lose weight and Lupus will go away
• Take more vitamins
• It wont kill you
• You look fine to me
• Pray more
• Ignore the pain or don't think about it will go away
• Sinning causes sickness
• Get out and get more sun
• Stop taking all those pills
• Eat better
• Join the army -they have free healthcare
• Exercise more
• Drink this shake, juice, or these vitamins they will cure you
• Those diet drinks are making  you sicker
• Stay away from me - your Lupus is making me sick
• I don't understand why you're so tired- you don't do anything
• You'd feel better if you'd get a job
• I know someone with Lupus who has a job
• I looked up Lupus the internet and it won't kill you

The list goes on and on and on of things that we hear from our friends, loved ones, neighbors, and co workers. We make the assumption that our families are trying to support us and make us feel better; but these comments and snide remarks don't help.

These "invisible" illnesses can make you doubt yourself. They can drain away your self esteem, and your self worth. Being in a body that you have no control over isn't an easy thing. Having an illness that not many people including medical personnel don't really understand is terrifying.

 Think before you offer advice on a disease that you know little to nothing about. We need support not your judgements or cures. If you really want to know what Lupus is about ask the person that lives with it everyday.

  

No More Lies

  Let's face it, I hate working out. I have made up excuses for the last 6 months about working out: I'll wait until I feel better; I'm incoherent in the morning; I'm too tired in the evening; I'll start next month; Monday's suck;  I'll start on even numbered day; and my all time favorite excuse is : I don't like to sweat!

It took me a while but I finally got tired of  lying to myself. I was getting pretty mad at myself and the limitations I placed on me. I wouldn't accept anyone else trying to limit me; however I was perfectly willing to limit myself. I think what upset me the most is I was essentially sabotaging myself. Today was slow going but I stuck with it.  It is going to take a while to build up strength, speed, and stamina but I have no doubt that I can do it. I have a friend who has Lupus as well and she bench presses 135 lbs! She can dead lift 150! This woman loves to run, she swims laps, and is learning to be a trapeze artist! I don't have that kind of goal in mind, I just want to be in shape and lose weight.

 Being on steroids for the last 16 years has not helped, in fact it is a large part of why I've put on so much weight. Steriods are a triple danger for me- it has weakened my spine , bones and has also given me steroid-induced diabetes at one time 10 years ago. The fact is it's going to be hard to get the weight off and even harder if my steroid dosage ever has to be increased. That will put me in danger of losing any progress I will have made. But I am not going to live in the world of what ifs.

 I have always been comfortable with myself no matter what size I am or how much I weigh. But it isn't about me being comfortable or okay with myself anymore. Now it's about me getting as healthy as I can. I don't want my weight to be another danger to my life. Lupus is enough of a danger to me as it is. In the past I've lost weight by dieting, but I've not been able to keep it off because I didn't want to include exercise. This time I am going to do it right- both work out and eat right. Time for a total lifestyle change.

 I think my family is afraid....and they should be.

 

Fabulously Flawed

 

Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.

Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. Steroids can suppress growth in children. Steroids can also cause irritability, agitation, excitability, insomnia, or depression. These changes in appearance and mood are more apparent with high doses of steroids.*

I can be stubborn, a little bitchy, short-tempered,  hard-headed, and set in my ways. I am open-minded but can still be judgmental. In other words; I'm not perfect. Even after 42 years I'm still a work in progress. I've learned that the only way I can even attempt to improve myself is to accept my faults. In this quest for self improvement I am also a work in progress.

  One of the reasons I am working on self-improvement is that I didn't like myself very much 3 or so years ago and I'm betting not many other people liked me either. I had a terrible anger problem; I lashed out at my family, friends, and co-workers. My job was on the line after one particularly horrible confrontation and I had to go thru anger management.

 During the anger management class/course, I learned that prednisone(corticosteroids) along with anxiety mixed liberally with my personality made for a dangerous mix. I'm also a fixer, if there is a problem I am almost compelled to come up with a solution or fix. However I took it personal when my solution and/or advice wasn't followed and I wasn't shy about telling you about it. A couple of other things I realized early on were that I couldn't stop prednisone and I had to deal with my anxiety instead of ignoring it and hoping it would go away. I went to my PCP and got on anti anxiety medication, however medication alone wont solve the problem.

  There were behaviors I needed to change:

• First and foremost MIND MY OWN BUSINESS: I felt I had to defend everyone who couldn't or wouldn't defend themselves
• Pick my battles; arguing every point is useless I had to learn to fight for things that made a difference and not fight for the sake of fighting
• Think before speaking; obviously this is the hardest thing for me to do still do this day.
• Try to get to the root of the anxiety; not being in control is a major factor in my anxiety. While growing up I had no control and apparently I was making up for it. Finally I learned that I can't control everything and most of the time I'm okay with that.

  After I accepted that I couldn't put all the blame on Lupus or steroids, I began to feel better about myself. Since I no longer have the weight of the world on my shoulder I do feel better. I still come up with solutions to fix things but I don't always share them. If I'm asked for a fix; I no longer take it personal when my advice isn't used. However, I do reserve the right to say "I told you so"- see I told you I wasn't perfect.

www.lupus.org *

Toxic People

  Computers, internet, and social websites have been a blessing to so many of us. It allows us to interact with people we've never met, but we have things in common with and to reconnect with people, friends and family we grew up with and haven't seen for years.  I've met many people and made many great new friends thru social networking. We share music interests, books, tattoos and shoes. Many of us have Lupus in common.  It has been an eye opening as well as a mind opening experience, to "meet" so many people that have the same illness as myself. With support systems we should  have empathy, understanding, and be supportive to one another. 

  At times the online experience isn't as positive we wish it to be. In opening up our lives to  the positive, there is also negative experiences. Toxic people exist in real life was well as virtually. They are the negative, manipulative, narcissitic, judgemental, insincere, downers, disrespectful, and nothing ever makes them happy people. I find it quite shocking at some of the things people will say because they are online and not in person. It seems to loosen up the tongue (or fingers), because quite honestly there are no repercussions. They can be very disrespectful and down right nasty.  I do my best to stay away from those people because I dont want to be sucked in. Life is too short and frankly I don't have to put up with it. If you get caught up in a situation like that I find it best to remove the people that are causing it.  

 Being toxic is a choice and I choose not too. Enjoy life- that's what it's all about.

 

 

 

http://shine.yahoo.com/work-money/8-toxic-personalities-to-avoid-461078.html

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How to Handle Toxic Relationships

My Self Esteem

No matter the area of expertise, our achievements and accomplishments in the workplace contribute to our self-image and identity. It’s not surprising that people with lupus, especially soon after being diagnosed, often wonder if their illness will affect their ability to contribute in the workplace.

Many people with lupus are able to continue to work, although they may need to make changes in their work environment. Flexible work hours, job-sharing, and telecommuting may help you to keep working. It may be helpful to begin to make such arrangements soon after you have been diagnosed with lupus.*

 "Many people with lupus are able to continue to work". That fact used as one of the  Facts of the Day during Lupus Awareness month. It seems to have set off a firestorm of controversy for some of us with Lupus. So much so that I understand some people were boycotting  LFA and  a petition to have that wording taken out of the education information that the Lupus Foundation of America provides was started.

 I'll start by saying that  I love my career! It brings me great joy and fills me with a sense of pride and accomplishment daily. Working helped me build self esteem, worth, and maintain a postive attitude.  When I am at work the fact that I have severe Lupus is secondary.  Working helps keep my mind busy, keeps from isolating myself,provides me with a little bit of normal,  and most importantly it keeps me from being wrapped up in "Woe is me and Oh poor me". 

 Working in health care for my entire career; I'm aware that there are a lot of people that choose to focus on the negative aspect of their illness.  Saying things like " I suffer from Lupus" to me brings on negative connotations and brings the person down and keeps them down.   I refuse to say that I suffer from Lupus as I am not suffering from anything in my life. I live with Lupus everyday and I have for almost 17 years.  There are many of us with autoimmune diseases that continue to work everyday. Some of us out of necessity and others out of sheer stubbornness.   I don't criticize nor look down on those who feel they can't work anymore. We each must deal with Lupus in our own way. The point I want to make is that there is more to me than my disease.

 Being diagnosed with Lupus wasn't  reason enough for me to stop working or to stop living. When I began to have complication after complication I fought even harder every day to go to work.  Sometimes going to work was the one thing in my life that I could absolutely control. Don't get me wrong; getting motivated to go to work isn't always easy. But to me and many others with Lupus and assorted autoimmune diseases it's always worth it. 

 

 

 

www.lupus.org*

Summer is Here!

Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare.

Everyone with lupus who is going to be outside for more than a few minutes should use a sunscreen with a sun protection factor(SPF) of at least 30 that blocks both ultraviolet A (UVA) and ultraviolet B (UVB) rays. Sunscreen should be applied thoroughly, especially to your neck, temples, and ears -- areas that are often affected by lupus skin problems.

Wearing proper clothing helps, too, such as broad-brimmed hats, long-sleeved shirts, and long pants. If you spend a large amount of time outdoors, you should wear clothing made of sun-protective fabric. Sunbrellas, which are umbrellas made with sun-protective fabric, are also available.

Since UVB rays are most intense between the hours of 10 a.m. and 4 p.m., you should try to plan your outdoor activities for early in the morning, late in the afternoon, or in the evening. Also be aware that UV rays are stronger at higher altitudes and when they are reflected by snow or water.*

 Summer is the time of year that most everyone loves. Time for travel, BBQ's, parties, weddings, picnics, camping, swimming, friends, and families.  I absolutely love the feel of the sun on my skin, the warmth, and the feeling of freedom it gives me. However it's also the time of year I have to pace myself the most because summer is also outdoor concert season.

I love live music! One of the best feeling in the world is being outside listening to great music, singing along if you know the words, having a drink or two, and enjoying it with people you may have just met.  The atmosphere is awesome at live shows. We are all there for the same reasons; to hear great music and enjoy ourselves.  Some great memories have been made for my daughter and myself at these shows. We've also made some wonderful lifelong friends that we met over our love of live music.

Too much time in the sun is typically when Lupus rears its ugly head. The sun drains me instead of recharging me like it used too.  If I have too much sun exposure; it may be days before I can get out of bed. My scalp breaks out in a scaly rash, my joints and muscles ache, I get chills, fever, and  it makes me very weak.  I have  photosensitivity even with sunscreen and protective clothing.

 I still enjoy the summer, I just dont spend as much time outside as I would truly love too. Whenever I get stubborn I have to remind myself that 10-15 minutes longer in the sun isn't worth the weeks in bed without sun or summer fun if I go into a lupus flare. I miss being able to run, jump, and play but I can see the sun from anywhere. I dont have to be standing out in it to enjoy it!

 Have a save and fun summer- please dont forget to protect yourselves!

  www.lupus.org*  

Minion

  Today we had to put down one of our Shih Tzu babies. Minion Golem Garcia was just 6 months old and full of like until just a few days ago. All of a sudden he wouldn't eat or drink and was in a lot of pain.

 We took him to our Vet and they found kidney failure. Apparently his kidneys didn't develop fully when he was born. He was a ginger (red headed) and so full of mischief. If he was too quiet them we knew he was into something.  He was fearless and there wasn't anything he didn't love.

 He brought us a ton of joy and laughter and we will miss him dearly. We took JoJo, our other Shih Tzu with us to our goodbyes to Minion. He was in so much pain, but he gave us all kisses just like usual.  I held him while he took his last breath.

 We love our pups, they are so much more than companions. They keep us sane and love us unconditionally. I'll miss Minion but I'm so glad he is not in pain or suffering anymore.

 

Gratefuls

 It's time for my gratefuls; gratefuls are just about acknowledging that despite my chronic illness I have many things to be grateful for. When I am having a day like today; with my pain off the charts; I can take inventory of all the great things in my life. Just so I remember that it isn't all bad. 

•  I'm most grateful for my husband and daughter. They keep me on the straight and narrow when I start to veer off into "poor me" land.  
• For our pups, who know just when to make me laugh or to sit in my lap and let me enjoy them.
• For our  support groups; providing support, positive feedback, education, and ideas to others with chronic illnesses. 
• That I have a job and that I can go to work everyday.  
• For my beliefs
• For my friend who buys me lunch when brain fog takes over and I leave home without a credit card or cash
• For music it relieves the stress in way that almost nothing else can
• For all my awesome friends both virtual and real world- you let me post Lupus information on your  pages non stop without every telling me enough is enough! I appreciate you all!

This is but a small list as the list of things I am grateful for can go one forever. If you're having a bad day think about the things that make you happy. Make a list of your gratefuls.

 

 

 

 

 

 

Father's Day

 Father's Day is a day to celebrate the men who do their jobs as father's. It's an extra special day for me to celebrate the man I married and the awesome father to our child.

  We had a pretty typical marriage in the beginning. The first couple of years after I was diagnosed with Lupus not much changed. When I began to get sicker, my husband took on a lot more. He started to make dinner and take on more of the household chores. He learned to comb our daughter's hair and get her ready for school. He also had to take care of me as well.

  For 2 weeks after he got our daughter ready for school each day he drove 2 hours from New Mexico to Texas to see me in the hospitial. He would then drive back to New Mexico to get our daughter from school in the afternoons.  When he saw that my medical needs would be met better in Lubbock, he found a job here and drove back and forth daily until we could all move together.

 Living with Lupus is not easy, but then neither is living with someone who has Lupus. I'm a very lucky woman and I don't ever want to take that for granted.  He may not always understand what I'm going thru but he's always there for me. He doesn't treat me like an invalid and he will push me to if I need it.

 I didn't grow up with a father and watching him with our daughter; I know what I missed out on. One day really isn't enough to celebrate the men who take the title of Father, Dad, or Daddy seriously. I'm proud to be married to one of those men.

 Happy Father's Day Honey! We honestly wouldn't be the same without you!

 

 I need to add that you've made it hard for any man who hopes to marry our daughter. This man will have a lot to live up too as you treat me like the Queen of the Universe and our baby girl is the most precious girl in the world. The example you've set for her on how a real man is supposed to be. I pray everyday that she is able to find someone that has what we have. We aren't perfect put we are perfect for each other.

 

Understanding

 I've written extensively about what having Lupus is like; the confusion, ups and downs, uncertainty of never knowing what each day will bring us.  Now think of what it would be like to be the spouse, parent, or child of someone with Lupus. How do we explain Lupus to the people we love?  How do we expect them to understand what we barely understand ourselves? 

   Lupus doesn't just effect me it effects my whole family. Every new diagnosis, setback, treatment, physician, medication, and temper tantrum is felt by my whole family. To have fallen in love and married  a young, vibrant, fun-loving person and watch them change over time and not know why had very frustrating for my husband. It was equally frustrating for the both of us when he would  ask me "Whats wrong?" and I couldn't answer him. I didn't know how explain the problems I was having. How do you explain the being so tired that no amount of sleep or rest will help? Back them I didn't have the words to describe what I was feeling.

 My daughter was just going to kindergarten when I was diagnosed. I can't imagine what it would be like to be that young and have to wonder how sick your Mommy is and worry that she is dying.  At 6 years old she could navigate her way thru one of the largest hospitals in West Texas by herself. She saw me in the hospital more than at home.  This was my daughter's life from Kindergarten thru 6th grade. By the time she was in junior high not only did she have the usual worries; acne, clothes, friends and being social; she would also hang out with me during chemotherapy treatments, blood transfusions, IV iron infusions, and various other treatments.

 We talk a lot about wanting the people in our lives to supports us and to understand us, but we need to realize it isn't easy for them either. Our families need our support as much as we need theirs . It takes time and patience on all our parts to make relationships work. Don't let Lupus take your family away, fight for it.

Living a Full Life

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks often for many years.Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.*

     It's very easy to get wrapped up in having Lupus, being sick and forgetting about everything else. That would be the definition of a half life and that isn't how I choose to live my life. I have had severe Lupus for 17 years , my complications from Lupus are also severe. Many of the dreams and goals I had for myself had to be rethought.It could have broken me but instead I decided it was time for new dreams and goals instead. 
 Going to nursing school was number the one on my priority list 13 years ago. Once I was started chemotherapy, I knew it wouldn't be possible for me to become the nurse I would want to be. I would not be able to work in the E.R. since my immune system was/is suppressed and that put me at risk for all germs and infections that come thru the hospitals. It made me sad but I didn't dwell on it

I'm now doing things that I never would have imagined. I'm the Coding Supervisor for a  Nurse Managed Practice. I also get to teach coding to Nurse Practitioner students. I love my job even with the stress it can bring.   I don't regret having to change my goals. Just because my life isn't exactly as I imagined it does not make it any less enjoyable.

 Lupus, is something that I will always have. However it would be a disservice; not only to me but also to my family to live a half live. I don't want to think about the things that I could have done or should have done. I want to remember the things I have done and make plans to do more. Life is what we make of it. Mine is made of more than Lupus.

Choose Life

 Many things about me have changed since I was diagnosed with Lupus. My energy, stamina, and spontaneity are a few of the things that were definitely impacted negatively by this diagnosis.  I'd love to be able to spend time out in the sun without worrying about flaring. I would like to do things that I used to take for granted like, cooking dinner after work, cleaning house, laundry; simple every day things.  The changes I've had to make since the diagnosis make me sad if I focus on how I used to live. It becomes an endless cycle of feeling sorry for myself and that just isn't me.

However I deliberately choose to focus on the positives of my life. Because there are many more things that I'll never ever give up, despite having Lupus.I love my job and I fight to keep it everyday. I love working as it provides me with a sense of accomplishment and fufulling. It also provides me with the ability to fund my shoe habit. Living, loving, my family, shopping, socializing, going to concerts, and enjoying my life. I don't worry about what others think of me, their thoughts and feelings aren't my concern. I live my life the best way that I can; admittedly at times its with Lupus its challenging, but its the only life I have. 

 Despite Lupus I will not give up on life. I will live everyday the best way I know how. I will not become half a person because I have a disease. I've lived thru hell with Lupus, 2 major surgeries, chemotherapy, and a host of other treatments. I'm still here doing the same things I've always done.

 Don't let Lupus or any other Chronic Illness become an excuse to feel sorry for yourself and to let life pass you by. It isn't fair to you, your family, or to those who struggle daily to have a sense of normal. Don't be afraid to live and don't let Lupus be the only thing in your life. We are far stronger than that.

   

Being Selfish

 As a rule most women I know are overachievers. We work, cook, clean, laundry, pick up and drop off children, grocery shop, help with homework, etc. Even with Lupus most of us still are working in Wonder Women mode.

 All women need to learn to take some time for themselves; rest and rejuvenation time. I think it is especially true for women with chronic illness. We have to learn to be selfish and take care of ourselves sometimes. I promise the world doesn't stop it keeps right on turning  while you rest.

 Pushing yourself to the brink of exhaustion and beyond doesn't do you or Lupus any good. Listen to the messages your body gives you, if you don't you run the risk of a full-fledged flare. The more you wear yourself down the worse Lupus and accompanying symptoms can get. When I go over do it I start to feel a bit of depression because laundry isn't done, the house is a mess, and my husband has to cook dinner...again. True to form I'll start a load of laundry and I may even get it to the dryer. But it stays there until for days because I'm so exhausted I can't go get them out or worse I leave them in the washer and have to rewash them. I feel worse because I can't do something simple like put clothes in the dryer. 

 All of these things compound and build off each other, then it turns into a vicious circle. I took a couple of weekends and did nothing. This past weekend I was able to shampoo carpets, do laundry, clean the inside of my car, and tackle the kitchen. Since I was well rested I don't feel exhausted from all the activity. Its a wonderful feeling.

Take some time and be selfish. Don't make dinner; have sandwiches and soup. Leave laundry for a few days and let your body take the break it needs.  You'll feel better and then you can get started on your quest to take over the world again.

 

Bedtime Blues

Getting the proper amount of rest is extremely important for people with lupus, especially during periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements, at least seven hours of sleep a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker, which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.*

 Sleep is something everyone has a hard time trying to get enough of. When you have a chronic illness its doubly important to be able to get enough rest. I find it hard to achieve the 8 hours of sleep we are supposed to have. When I am feeling well, my brain doesn't want to shutdown. I can survive on 6 or so hours a night during the week. I find that I want to do everything I can while I can. This isn't always the best approach; especially if I want to continue to feel well. I try to practice good sleep hygiene like the experts say, have a set bedtime every night. Use your bed for sex and/or sleep; not eating or watching television. 

During a bad flare it seems I never seem to get enough sleep. Its as if I'm unconscious when I lay down. While flaring I can sleep upwards of 15 hours straight and it still wont be enough. I think its because our bodies need time to rest and regenerate. Like everything else with Lupus, we do not get a choice in the matter.

 During milder flares, the fatigue is like walking thru the deep end of a swimming pool with combat boots and a parka. You're not getting anywhere fast or easy. I wont drive during these times, my reaction time like everything else is too slow and I do not want to hurt anyone not myself. I still get where I need to go, I just have someone else do the driving.

 The bottom line is sleep while you can and when you can. During a flare you don't have to prove anything to anyone at all. Get yourself rested so you can bounce back from the flare. Sleep is important and at times it seems like we just don't get enough.

 

 

 

www.lupus.org *

Worth The Challenge

 

 

 I have a chronic illness, it makes life challenging to say the least . However it doesn't making living impossible.  I feel that I can do anything I put my mind too.

I've come back from femoral-politeal bypass surgery, pericarditis, chemotherapy, and Class 4 nephritis. When others recommended I apply for disability and enjoy the life I have left I didn't listen.  With the support of my husband and daughter, I perseverved and came back. 

 I plan to live a full, exciting, and semi-normal life. I want to enjoy my life and do the things that make me happy.  It makes me happy to go to work and earn a living. It makes me happy to not stay home and think about Lupus everyday. It makes me happy to be productive.

I respect the limitations that I have with Lupus; I can't do everything I want. I also can't do things as fast as I would like, but the point is I can still do them.  I'm not a why me nor a woe is me kind of person. I value life and I am not going to let it pass me by. I'm gonna live it with as much gusto as I can.

 Life with Lupus is not easy, it can be challenging and a struggle. But it is a challenge worth taking on. I refuse to give up, I have too much to live for.  There is more to me than Lupus.  

   

Keep Fighting

 Lupus Awareness Month is over until next year. Unfortunately it isn't that easy for me; I still have Lupus. For the other 1.5 million people out there like me, nothing has changed. We still live with this illness.

I have struggled over writing this for the last couple of days. This past month it has been my goal to help our friends, loved ones, acquaintances, and complete strangers understand a bit more what we deal with on  a daily basis. I hope I've been able to accomplish that goal.I have never wanted sympathy or pity; I would like empathy and understanding.

 I want my fellow Lupus warriors to see that we are NOT a burden. Lupus is the burden that we carry. One of the other important things I wanted to get across is that our lives aren't over when we are diagnosed. Our lives do change when we are diagnosed; there is no denying that. We may not be able to the same things we once were but we are still able to live full lives.

 Even though we have the same disease, it is still different for all of us. I can tell you from my perspective, I have severe Lupus and I still work and play. I need to rest a lot more than I did before I was diagnosed, but I can still be me. When I go thru a rough patch, I have my family, friends, and extended family to lean on. Find your support system, if there isn't one near you, start one.  Don't go thru life feeling as if you don't matter, because you do.

Don't let Lupus take over your life, it can share but it can't have it all. Living with Lupus takes unimaginable strength and I'm proud of us all for being able to show our strength. Keep up the fight.

The Missing Link

What causes Lupus? No one knows what causes lupus. Scientists think that people are born with the genes to develop lupus and that something brings on or "triggers" the disease and symptoms. However, a combination of genetics (heredity), environment, and hormones is involved.*

 What causes Lupus is one of those questions that I don't believe can ever be answered in a way that satisfies everyone. Over the last year; in our support group; we've posed the question many different times. Certainly there are commonalities that quite a few of us share: problems with sun exposure, allergies to sulfa drugs, at least one relative with an auto-immune disease, infections, giving birth, and stress.

 Unfortunately there are just as many triggers that are unique to us as well: exposure to chemicals in rural farming areas, chemical plants in cities, drug induced Lupus, and injuries.

 We've conducted our own informal polls on mixed racial heritages, physical and sexual abuse, childhood trauma, adult trauma, and our age at the time of diagnosis.  Needless to say we've been unable to come up with any sort of consensus on Lupus.

 In my heart I believe that each persons Lupus diagnosis may be unique to the individual. What may cause one person to flare may not have the same effect on anyone else. However the more questions you can ask of those around you with Lupus, the more information you may find that will help in narrowing down some of the possible causes.

 For instance, I always believed myself to be healthy until shortly after the birth of my daughter. In group we'd been discussing reactions to the sun, and I remembered that I've had issues with the sun since I was very young. I remember not being able to go to the pool with my summer camp due to several instances of blacking out and nose bleeds. These came after prolonged exposure when I was just 5 and 6 years of age. I'm allergic to penicillin, there is a family history of auto-immune diseases, and I was hospitalized pretty young due to an illness. Like many African-Americans, there is a mixed racial background in my family also.

 As you can see the possibilities of what causes Lupus are endless. I am not sure if we'll ever know the cause for each and every one of us; however if the scientist can narrow it down it may help in finding a cure. Meanwhile we'll keep researching and asking questions. You never know; we might find our missing link.

 

 

 

 

 

 

 

 

www.lupus.org *

 

All In It Together

 There's no doubt about it Lupus is a very tough disease. It touches you physically, emotionally, and spiritually. When I diagnosed initially I didn't want to be involved in any support groups. I had my family and that along with my stubborn, strong-willed personality. We've always been to handle whatever life threw at us.

 In the past couple of years my family and I have gotten more involved with the Lupus Community. We started with the Annual Lupus walk, then we joined the local support group. That's when I had an "aha" moment. This support was different because there were other people who knew what I was going thru. They knew what it meant to be fatigued after a great nights sleep and to have to take multiple medicines several times a day.

 This past year I joined an online support group and I will admit I was somewhat skeptical. Will people open up to complete strangers? Is it going to be supportive or just a long gripe session?  It worked out better than I expected because yes people will open up to complete strangers. After all we do have something in common.  It is very supportive atmosphere, the members have really opened their hearts to and minds to each other. We shared treatments that have worked for us, medications that have failed to work. Tips for exercise, meals, cleaning, etc. We do have to take the good with the bad, there's nothing wrong with a gripe or complaint but we are very careful to not let our posts turn into long gripe sessions. It can turn negative and that doesn't help anyone.  My husband and daughter have joined the online support group as well. Now they both have a better understanding and different perspective of what I live thru every day.

  Having this kind of support has changed me, I no longer feel like I have to deny when I am in pain or when I don't feel well. I don't have to be ashamed when Lupus gets the best of me for that moment. I began blogging about my experiences, my hope is that the next person doesn't have to learn everything the hard way like I did. 

 The bottom line for me is, if you don't have support then you should find some whether its local or virtual. If you're in the right group with the right frame of mind, the knowledge, friends, and caring you'll receive are out of this world. If you don't know if there's a support group in your area, the link below is for LFA. They can help you find a support group or start one if you're interested.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_researchbasic.aspx?articleid=864&zoneid=32

 

DIY Medicine

  A few years ago I had pain in my left side that was off the charts. I have a high pain tolerance, so I ignored it for a few days. Of course it continued to get worse. I finally gave in and let my husband take me to the ER. As soon as I disclosed my medical history, I knew that they weren't going to look very hard for my issue. They did a CT (cat scan) of my abdomen and said "Its not your appendix so it must be Lupus. Follow up with your Doctor." The pain didn't get any better and a few days later my husband made me see my PCP. When it was all said and done, I had an ovarian cyst that had twisted and pinched off.

 Because of the experiences that many of us with Lupus have had with the ER and urgent care clinics we sometimes chose to consult our computers when we get new symptoms, pains, and aches. There are plenty of search engines out there, Dr. Google, WebMD, Right Diagnosis, to name a few of them. They are chocked full of information that can help or hurt in our search to find out what the problem is.  

According to a recent study, one in four British women has misdiagnosed themselves on the Internet. Researchers found that women with real health concerns are twice as likely to go online for advice than they are to ask a doctor, their friends, or even their mothers, especially where embarrassing symptoms are involved. In that same study not only did they misdiagnose themselves, the women also bought medicines based on the diagnosis and tried to treat themselves.*

 To test the study I put in a very simple symptom a search engine; peeing at night. The following is a list of the Top 10 causes the search gave me:

Enlarged prostate

Benign prostate hypertrophy

Prostate cancer

Prostate disorders

Bladder disorder

Irritable bladder

Kidney failure

Chronic kidney failure  

Diabetes

Hyperparathyroidism

  The search parameters I used were pretty broad, but I was quite surprised that my  top 4 were all prostate related. In all fairness I didn't enter that I was female, but it produced the list without asking me to clarify or add any other information. The site has links to home testing, OTC (over-the-counter) medicines, treatments, etc. but I didn't find a place to enter that I have Lupus.  The causes I was given are all quite serious diseases. But the search engine doesn't play 20 questions like my physician does. The cause of my nocturia (night urination) is really very simple, I drink 100+ ounces of water a day.  Even though I'm done drinking water by 6:30 pm I still go to the restroom quite frequently.

  DIY medicine can help narrow down the list of possibilities for new aches and pains, however it can be very misleading and dangerous also. Before a proper diagnosis can be made tests are typically needed. Make sure you're consulting your physician(s) prior to starting any medicines that have not been prescribed by them.

 

 

 

http://www.zdnet.com/blog/health/dr-google-misdiagnoses-one-out-of-four-women/478 *

 

 

 

 

 

 

 

 

 

 

 

 

1.5 Million Faces

Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. The diagnosis of lupus is based off of a combination of physical symptoms and laboratory results and for most people is not a one time diagnosis. More often than not it is a diagnosis that evolves over time either towards more certainty that a person does or does not meet the criteria for a diagnosis of lupus.*

We are doctors, wives, singers, mothers, fathers,actors, lawyers, writers, artists, husbands, brothers, sisters, friends, grandmothers, grandfathers, children, bankers, lovers, nurses, aunts, uncles, and cousins. We come from all walks of life with one thing in common: We are the 1.5 million faces of Lupus.

Lupus is a very hard disease to have. It's  hard to get diagnosed, it's hard to treat, and it's hard to live with. The medications and treatments we take help us and harm us simultaneously. One day we are fine, the next we are bedridden. Sometimes we feel like we are burdens to our loved ones, it's enough to make you think you're going crazy.

We aren't crazy and we are not burdens. Lupus is the burden that we carry.  Lupus has forced us to give up things we love like the Sun, walking, running, dancing, and spontaneity is out of the question.  We've had to learn a  new "normal". It isn't always easy to reconcile the new you with the old you.  We would like the same things as everyone else; acceptance and understanding.

We want and need one thing: a cure.

www.lupus.org *

Fragile strength

 

 

 There comes a time in everyones life when being strong isn't an option. When you reach your breaking point and you feel like you just can't deal with anything else.  You may feel pretty fragile at that moment in time.  Fragile doesn't equal weakness. Some of the most fragile things in world are stronger than steel.

  I do not consider myself a fragile person, I'm a fighter and very strong-willed. I hold my feelings in and I rarely shed tears. Having dealt with a lot in the first 17 years of my life, I excel at being strong under pressure. I always expect the unexpected.  However the day I was officially diagnosed with Lupus I cried like a little girl. Lupus didn't have a physical manifestation for me to hit, kick, or bite. So I cried instead. Those tears helped me get it out of my system. 

 The next time I shed tears over Lupus was in Oct. 1998, when I couldn't walk. My first trip to the Cardiothoracic Surgeon he didn't have an answer for me, other than I needed to lose weight. These tears were from frustration. I couldn't WALK! How in the heck was I going to lose weight? After a venous doppler was done later that day; a clot was found. Then I shed tears of joy because there was a real answer!  

  In May 2000, I went to my rheumatology appointment alone, it was supposed to be just a follow-up. My doctor told my I had nephritis. I didn't cry for me this time, I cried for my family. Everything had been going so well and now I had to tell them that we were in for another long hard road.

 We all deal with adversity differently. Some of us quietly. Some need support from family and friends. There is not wrong or right way, just the way that works for you. 

  

 

Laugh it up!

  

• Laughter relaxes the whole body. A good, hearty laugh relieves physical tension and stress, leaving your muscles relaxed for up to 45 minutes after.
• Laughter boosts the immune system. Laughter decreases stress hormones and increases immune cells and infection-fighting antibodies, thus improving your resistance to disease.
• Laughter triggers the release of endorphins, the body’s natural feel-good chemicals. Endorphins promote an overall sense of well-being and can even temporarily relieve pain.
• Laughter protects the heart. Laughter improves the function of blood vessels and increases blood flow, which can help protect you against a heart attack and other cardiovascular problems. *

 

 

 My sense of humor can be risque, a little morbid,inappropriate, and really goofy. I laugh a lot each day and truthfully I am usually laughing at myself. When I get nervous I laugh a lot. My husband bought me a car, when our daughter was a few months old. I had the car only a couple of weeks , when hit another car and got a small dent in the front fender. I was trying hard to tell my husband what happened and I kept laughing. I finally had to show him the dent, to say that he was upset is an understatement.  The more I laughed the madder he got, but I couldn't stop laughing.

  My husband had to travel for work for a couple of months. We had just moved and didn't know anyone. Our daughter was 3 years old and missing her Daddy, so it was my bright idea to use eyeliner to paint on goatees like Daddy. We took a nap, and then went to the store. People stared at us and we got a lot of double takes, I didn't know why until we got home and I looked in the mirror. I saw we still had those dang goatees painted on!

  When my doctors found the arterial clot, I had to register at the hospital for surgery. The front desk person was going over the forms with us and asking if we had any religious preferences. I said "Yes, we require a live chicken, candles, and a knife". She stopped in the middle of her recitation of this long form and stared. I was a straight-faced as I could be but it only lasted for a few seconds. My husband and I laughed at the look on her face. She didn't think it was funny.  I've gone to work with my clothes on inside out, backwards, and different colored eyeshadow on each eye. I forget pay attention to the little details and because of that I get to laugh at myself pretty much everyday.

  Live with Lupus is serious, but it doesn't have to be all serious all the time. I am allowed to laugh, have fun, and live! It doesn't make me anymore or any less sick, it just makes me happy! Find something to laugh at or someone to laugh with today. It will make you feel so much better.

 

 

http://www.helpguide.org/life/humor_laughter_health.html *

A Day In the Life

 My alarm goes off at 5:15 am each weekday morning. There are times that getting out of bed is easy, but if I'm honest with myself most times its a struggle. 

Next on the agenda is a shower. A nice hot steamy shower to help ease the aches in my joints and muscles. If it is a particularly bad morning I will need to rest after my shower.  Getting dressed, packing breakfast and lunch, feeding the puppies, and making sure I don't forget to bring my medications with me fill the rest of my morning.

  Getting ready for work is a pretty simple task. My husband can do it in 30 minutes or less. It takes me 3 hours to accomplish it. This is a morning in my life.  I push myself to do this everyday because I want more than Lupus to fill my days. I need to work while I am capable, I need to feel useful, I need to feel like I am making a difference.  The path I've chosen to walk with Lupus isn't easy, but it is the one for me.

  I am not complaining nor am I asking for sympathy.  What I want is to spread awareness and understanding.

Too Hot To Trot

 Cyclophosphamide (Cytoxan®) can cause premature menopause or temporary estrogen loss. Because estrogen protects bones,anything that speeds menopause or deprives your body of estrogen increases the risk of bone density loss.*

 

I have been cold-natured my entire life. Yes,  I'm that person who has a heater under their desk going year round. I have a several sweaters in my office, in the car, and a blanket or throw in every room in my house. This past year I began having hot-flashes. The first few times they were kind of cute, something novel since I'd never experienced them before. It didn't take long for the "cute" to wear off and the "Oh My Gosh" to kick in.

 Since I am too young for menopause, I started researching to see what in the world was happening to me now. According to what I've read and discussed with my doctor, Cytoxan, the chemotherapy drug I took for 3 years can cause premature menopause. As Murphy's Law would have it, I am unable to take any HRT (hormone replacement therapy) because of the antiphospholipid syndrome. A lot of the homeopathic remedies aren't options for me either. I am not sure how they'd affect my coumadin dosage and I am not willing to find out.

 For now I work around it, my heater is on until I feel a hot flash coming. Then I grab a freezer pack and put it on the back of my neck. As soon as I am cold again the heater comes back on. At night I have several fans going in our bedroom and a giant comforter. When the flash comes if take the blanket off until I feel cold again. For now its the only solution that I have since estrogen replacements are not an option for me.

 It isn't perfect but it works for me.

 

 

 

 

 

 

 

www.lupus.org *

How Long Do I Have?

 

Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal lifespan. People frequently read in the literature that, 80-90% of people with lupus live for more than 10 years. Unfortunately, this is often misinterpreted as people with lupus live for only 10 years.*

 "How long do I have?" This was one question I never thought to ask after being diagnosed, it really never crossed my mind. Its not that I think I'm invincible, its because I am a fighter.  I've never been the type of person who just lets things happen to me or let the situation control me. Letting things ride isn't something I'm good at. 

For me, this outlook on life started very early on.  There was a time that I had absolutely no control over my situation, surroundings, or anything else. I can't say when it happened but something in me said "No more".  I decided that I needed to make my own fate not the one that was being handed to me.

 My approach to Lupus has been exactly the same, tell me what I can't do and I'll show you that you're dead wrong. I've been told for many years due to the severity of my Lupus that I shouldn't work. I should apply for disability and stay home.  Why? Yes there are times when my body says "No way sister, not today", but for the most part if I can move I am going to work.  Admittedly there have been times when I've made serious errors in judgement when it comes to going back to work to soon from surgeries or after a 4 hour chemo treatment.  Thankfully those times worked out without to much damage to being done to me in the long run.

   "How long do I have?" , is still not a question I will ever ask. I don't want to spend my life living for the day that my number is up. It would definitely have a negative impact on how I live my life and how I feel about life.  I feel up to this point I live with a purpose and a zest for life. All life is finite, I could walk out the door and get hit by a bus or I can live another 40 years.

  None of us know, whether we have Lupus or not,  what is in the cards for us. I never want to waste a moment of  life thinking about how short my life could be. Even when I am unable to move, I can still interact with my family, read, listen to music, and talk to my friends around the world. Its the quality of life not the quantity that makes a difference.

 

 

www.lupus.org Coping with Lupus*

31 Days Isn't Enough

 May, as most of you may know is Lupus Awareness Month. I've been doing my part along with all Lupus survivors, caregivers, and loved ones to spead awareness. I'm posting 2 blogs per day, getting my co workers involved with the National LFA campaign, and going to our local Lupus Support group event. Face Book has been an extremely useful tool, our Support Group members are posting Lupus Facts on their pages, as well as  having a fundraiser on a  Face Book page.

  At the beginning of the month, I had a Rheumatology appointment. One of the phlebotomists completed my purple dress, I thanked her and told her that I was representing Lupus Awareness. She said "Oh is that today?" I was shocked! How could she not know? She works in an office where she would work with  100's of Lupus patients a week, how can anyone in that environment not know? I let her know that it wasn't just that day, but the entire month. I noticed that there weren't any signs up in the office regarding Awareness either. I'm sad that they couldn't take a few moments to tack up a poster.

  Last night at our local POP (Put On Purple) event, one of the City Councilmen attended our event. He presented us with a special proclamation- the Mayor and City Council made May 18th Lupus Awareness Day in Lubbock, TX. That was pretty awesome! Hopefully next year we can plan a City wide event to get the word out. All-in-all I have been very happy with the events and participation that I've seen and been involved in. I'm proud of the attention and interest that we've been getting. 

 One thing to remember, when May is over I'll still have Lupus. I will still do my best to continue educating, advocate,  and spreading Awareness. Thirty-one days just isn't enough.

Bone Health

 Studies have found an increase in bone loss and fracture in individuals with SLE. In fact, women with lupus may be nearly five times more likely to experience a fracture from osteoporosis. Individuals with lupus are at increased risk for osteoporosis for many reasons. To begin with, the glucocorticoid medications often prescribed to treat SLE can trigger significant bone loss.

In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk. Studies also show that bone loss in lupus may occur as a direct result of the disease. Of concern is the fact that 90 percent of the individuals affected with lupus are women, a group already at increased osteoporosis risk.

 

Osteoporosis is a disease in which bones become fragile and are more likely to break. The areas most often affected are your spine, hip, and wrist. The word "osteoporosis" means porous (porus) bone (osteo). Bones are a living tissue, constantly changing and being renewed. This takes place in two stages: the breakdown of old bone cells, and the forming of new bone cells. During the breakdown process, special cells become active on the surfaces of the bones and create small cavities. This is followed by bone formation, during which bone-building cells fill the cavities with new bone. If the bone that is removed is completely replaced, your bones will remain strong. In osteoporosis, too much bone is removed and/or too little bone is formed. This process leads to a loss in the amount and strength of bone.

When you have lupus you are at risk for osteoporosis for many reasons:

• lupus itself is a risk factor

However, these factors also increase osteoporosis risk:

• having a small-boned and thin body type, whether you are female or male

If you have two or more of these risk factors, talk to your doctor about having your bone mineral density tested. In many cases, osteoporosis can be prevented if proper measures are taken when warning signs first appear. *

 

If you are currently on a regime that includes prednisone or other steroids please make sure you have a bone density test done regularly. I've been on steroids for 16 years. I had a bone density done 10 years ago, in my mind since it was okay I wouldn't need another one until I was older. I had another done a few months ago due to severe back pain and the fact that I've been on steroids for so long. My PCP was very worried about the damage to my bones from the steroids. The results stated that I have a 30% chance of a bone fracture. Fracture? I'm only 41 years old, still not old enough to worry about fractures and osteoporosis, in my mind.

 But now its a very real possibility. I've added Calcium and Vitamin D twice a day to my Lupus cocktail(medications), I am also trying to become more active in order to strengthen my bones. Obviously not an easy thing to do with Lupus, my family and I went to the park yesterday with our dogs. I am laid up on the couch with a swollen knee, very bad back pain, and I am so fatigued I barely have the energy to get up and go to the restroom. This is one of the joys of living with Lupus, for every good day we get 3 bad ones in return.

  What I've learned is no matter your age, if you are taking steroids please ask for a bone density test. After the results of the test your physician will let you know if it should be done annually or not.  If lack of insurance is a factor check with County Hospitals and/or University Hospitals, they usually offer the services at a reduced rate and they base it on income. Sometimes they do studies for various reasons and you can get the density test done at no cost to you.

 Dont wait to "older" to get it done. Be proactive about your bone health.

 

 

 

www.lupus.org*