Everything You Wanted to Know About Autoimmune Diseases But Were Afraid to Ask

As I was browsing through my list of saved links on my Favorites list earlier today I came across this very comprehensive and interesting site:Understanding Autoimmune Diseases

Symptoms, possible causes and other startling information are discussed.

It's a very interesting and eye-opening read both for those suffering from an autoimmune condition as well as for those that simply want to learn about it.

Spotlight on Sarcoidosis

I was just watching a special on A&E about the darker side of comedy and the tragedies that famous comedians have gone through. I learned something new and didn't know that Bernie Mac had Sarcoidosis, an autoimmune disesase.

This excerpt was taken from Medline Plus Medical Encyclopedia online to explain what it is: "Sarcoidosis is a disease in which swelling (inflammation) occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. In sarcoidosis, clumps of abnnormal tissue (granulomas) form in certain organs of the body. Granulomas are clusters of immune cells.

The disease can affect almost any organ of the body, but it most commonly affects the lungs.

Possible causes of sarcoidosis include:
*Excess sensitivity to environmental factors,
*Genetics,
*Extreme immune response to infection

The condition is more common in African Americans than Caucasians. Females are usually affected more often than males. The disease typically begins between the ages of 20 and 40."

I remember hearing on the news that his death was attributed to a heart attack with no mention of Sarcoidosis. Maybe my memory fails me. At any rate it would have been nice for an autoimmune disease to gain some media attention to educate the masses.

A Small Step

I finally posted a question on Dr. Oz's website. The space only let me type a few words but I got to ask "Why aren't there any doctors specializing in autoimmune diseases?"

I'll keep checking to see if there's a response and will post it in a future entry. I took a very small step today just by asking a question but who knows, this could be the beginning of autoimmune diseases actually being discussed in the media and thus educating the masses.

Ask Dr. Oz?

Well, my growing frustration with the ignorance at large concerning autoimmune diseases and their symptoms has prompted me to ponder sending America's Doctor, Dr. Oz, an e-mail. I love his show and it's so informative and entertaining!

Perhaps someone with his clout is just what is needed to get people talking, thinking and learning about all things autoimmune. Now I'm generally a reserved person who wouldn't want to be on tv or in the spotlight of any kind, but for this cause I certainly would. It wouldn't hurt to write to him at any rate. Maybe he'll respond, maybe he'll do a segment on a show someday, maybe I'll get to ask my question live on tv. Ha! Well, I'll give it a try.

If enough of us do something to bring this cause to the public's eye in whatever medium we choose we'll be making strides in no time.

Disability: Yay or Nay?

Speaking of stigmas! Again I have been raised to not even see a doctor unless you're practically on your death bed. Feeling a little nauseous? Go to school! A headache? Go to work! Yes, disability in my mind meant someone completely incapacitated and not being able to do anything. Perhaps I was also led to believe that it was a handout and that many who didn't truly need it or were deserving of it got it anyway. A certain neighbor who received it simply due to the fact that she was obese came to mind. I'm no waif by any means but I certainly wasn't one of those people who was about to take advantage of the system.

Constantly bombarded with Binder & Binder commercials flashing every 5 minutes or so on the tv, I began to wonder if my illness qualified as a disabling condition. When I was working prior to being laid off in September I remember feeling ill most days. I am still horrified by how many sick days I took and even moreso by the fact I wasn't fired by my employer for taking so many. I have good days and bad days but if my bad ones extend to more than a few at a time like they did I wonder if any new prospective employer would ever put up with me. That's a sobering thought which started to crack the shield of denial I have worn so long regarding my own disability.

I decided to do some research about what disability truly was and if I qualified for it. SSI is strictly needs based and I don't even qualify for Food Stamps so that one is definitely not for me. SSDI on the other hand is a program that you pay into while working sort of like an insurance if you do ever become disabled. There's no shame in that at all and I certainly paid into it throughout my career. I am indeed entitled to every penny and it's not a handout at all.

I then browsed through the various ailments that automatically qualify you and shockingly, but perhaps not so, I qualified for several. I have an Endocrine disease, Immune ailment and Depression. I have since brought up possibly signing up for disability with both my General Practioner and Endocrinologist. They both agreed that they would gladly help me and also suggested seeing a Psychologist. The main reason for this was not only for my ultimate happiness and to help me deal with my illness but also because I am so young and educated that it may be a bit more difficult to receive disability. Ha! I have since been seeing a therapist and also mentioned possibly going on disability to her. She completely agreed and is helping me to work through my feelings regarding it and weighing the pros and cons.

Currently I'm still on the fence about it because a part of me feels like I'm almost quitting and giving up the fight. I am a very ambitious person and this doesn't sit well with me. She insisted that there are a great many high-functioning people who receive disability and go on to lead happy and productive lives. Also, you don't have to "look sick" in order to be sick and disabled. I have to keep telling myself that. Another thing she brought up is that stress levels can exacerbate my condition (I know this all too well) and so looking into disability is a very wise decision and one that will help me in the long run.

I will also still be able to bring in some sort of income by doing part-time work. A certain amount per month is allowed. I believe that one is allowed to own a business but not work at it as well. There are a lot of other things I need to look into but I am looking at filing for disability in a whole new light and will probably start actively doing so within the month. I understand that it is a long and drawn out process and the sooner you get the ball rolling the better. I will continue to post any new information regarding my filing for disability. Remember it's not the end but a new beginning.

Treatments for Autoimmune Disease?

I watch a lot of Discovery Health Channel and love medical shows in general. It's one of my favorite pasttimes. In one episode of "Mystery Diagnosis" a little boy had an autoimmune condition that severely impaired his motor skills. A treatment known as plasmapheresis was performed on him and he consequently improved each time he did it. Plasmapheresis is a procedure similar to dialysis which filters the blood to eliminate the antibodies which wreak havoc on the body and destroy the various tissues and organs depending on which autoimmune condition you happen to have. How interesting! And why wasn't this treatment ever mentioned by any of my doctors? I did some more research on the internet and apparently so far it's only used on the more serious life threatening ones like Guillain-Barre syndrome and Lupus. I didn't find any information on this as being a possible treatment for Hashimoto's. The standard treatment for Hashimoto's seems to be to just let the thyroid die and to have the antibodies keep on doing their nasty work while then having to take replacement hormones for the ones lost due to the gland being eaten alive. Lovely. Why not just nip the real problem in the bud and get rid of the antibodies which destroy the gland?! Nah too easy I guess. Ha! Gotta love beaurocracy.

In my searches I have also come across medicines which supress the immune system and even read something about low level chemo which does so. Wow. Can these be applied to Hashimoto's? Is there any more research being done to combat autoimmune diseases? Why aren't there any autoimmune doctors or specialists?

The other day I saw my Endocrinologist for blood test results. Another doctor sat down with me prior to meeting with her to document my progress and medical history. My Endocrinologist is quite busy these days. I asked the doctor about my antibody levels and if they were shown to have increased on the blood test's results. He looked dumbfounded as he was looking through my medical file and then excused himself and said he had to ask someone. It was about a good 10 minutes later when he returned and stated that this blood test didn't check for them. Way to dodge the question. Anyway, I can see that the medical community has much work to do regarding anything autoimmune related.

Battling a Social Stigma

For several months now my Endocrinologist has persuaded me to see a Psychologist. She once asked me about my line of work and I believe my response was that I was stressed out and didn't like my job. Ever since then she has asked if I wanted her to prescribe me a "happy pill." I have since been laid off along with 600 other fellow workers so clearly my unhappiness at work is no longer an issue. It was indeed a blessing in disguise come to think of it. I was seriously hanging on by a thread both physically and mentally as a result of my illness and also because I was no longer satisfied with the job. My side business which is my true passion was beginning to overshadow my full-time job anyway and it sounds horrible to say but my 9 to 5 job was becoming a hindrance blocking my ability to expand the business further.

As every visit came and went my Endocrinologist kept asking me if I saw anyone yet. I began to wonder: Do I look unhappy? Am I really unhappy and just in denial about it? Was I depressed and didn't even know it? I decided to give talking to someone a try.

Seeing someone and speaking about your feelings and problems is virtually unheard of in my mind and not how I was raised at all. Taking a "happy pill" is even more of a taboo. While I am happy to say that I overcame my pride about seeing a therapist (I will be seeing her for the third time coming up next week), I still feel very strongly about not taking any medication unless I truly need it. I maintain that I don't have to since thankfully I don't have extreme Depression or Anxiety. I have discovered that I do suffer from these afflictions from talking to the therapist but all in all I manage it well.

Thyroid disease can cause symptoms of mental illness unfortunately. I must admit that before I was diagnosed with Hashimoto's I had some pretty scary bouts of depression but always managed to rationalize it and function well in the world. I guess a part of me thought it was normal to feel this way and I haven't felt otherwise so this must be my normal. I have never felt the need to see anyone as a result and also didn't want any of the stigma attached. A part of me still feels a little funny about walking to the therapist's office or sitting in the waiting room. I wonder what the others think I'm there for? I hope no one recognizes me. It's all so silly but there still is that real fear of being stigmatized. I'm by no means crazy but I'd be a fool if I said I didn't have any thing to work out or toward. We all have something or other.

I am happy with myself for taking that first step. It really is the only time during the week that's truly just for me and about me. It's a time to help me sort out my feelings in dealing with this illness. I often have a "it's no big deal" attitude even when with things that are a huge deal. It is a big deal that I can't let myself just relax when my body and mind are telling me that I need to. It is a big deal when I berate myself for not finishing every little thing on my to-do list. It is a big deal when I feel like a failure because I didn't do something substantial to expand my business on any given day because I feel too sick and out of it to even think about doing anything. These are just a few of the things I hope to work through. I just want to be able to enjoy my life more and reach the goals I set in place for myself while respecting the fact that I may not have the energy I once used to.

I'm a work in progress but the stage has been set. For anyone thinking about seeing a Psychologist but wary of doing so I highly recommend it. If I did it you can too. It's time for this stigma to go away.