Butterfly Warrior

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.