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.

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.

A Clean Bill of Health... For Now

I just came back from my Endocrinologist's for a review of blood and urine tests that were taken a little over a week ago. She was super happy about it and I must admit that her mood was quite contagious. She was finally satisfied with my hormone levels, liver and kidney function and even vitamin levels. I need to work on increasing my good cholesterol levels but that's it. She said that for now she would not be increasing my dosage of Synthroid but may need to depending on what the next bloodtest, which would be taken at the end of January, reveals. Yay!

I have been feelng a lot better lately. Better than I have for some time. I still feel fatigue, muscle weakness and occasional joint swelling but all in all it's not bad and I'm used to it. By now I'm guessing that these symptoms will probably never really go away completely and so I'm still trying to make my peace with this.

While I'm pleased with this news, and trying to cram as much as I can into these "good days," I'm also a bit sad and scared because I know this will soon end and I'm not looking forward to it. I just hope that I can accomplish as much as I can in between and I'm not too hard on myself when the bad days rear their ugly heads again.

Let's Make a Trade

Recently a friend of mine told me that he was diagnosed with Graves Disease. He had been trying to figure out what was wrong with him for some time. About a month ago he had been told that he had diabetes. Turns out that what he really had were hormone levels that were about 3 times too high which were making him extremely hyper and consequently extremely tired. He reported to me that he felt relief when he could finally put a name to what he had. He was also pretty angry that no one else even thought to check to see that it could be Graves before this.

I totally understood this and remember feeling the same way upon my diagnosis of Hashimoto's. I then told my boyfriend about our mutual friend and he jokingly suggested that he send some extra hormones my way since he has too many and I have too little. Hahaha! Leave it to him to make a joke and lighten the mood. Aww I love him. :)

Yet Another Odd Symptom

A funny thing happened to me in Philly the other day.... That sounds like the beginning of a joke but the truth is it wasn't funny at all and more scary than anything. Once again a new symptom reared its ugly head.

My right knee swelled up and stiffened to the point where it became quite difficult and painful to walk. And of all days I had a long walk ahead of me. I was walking down Broad Street, Philadelphia celebrating the Phillies' National League Division win. Go Phillies! It was an amazing experience except for the minor annoyance that was my knee. Why now? *sigh*.

If I didn't mention it before I'll say it again, I have a very loving and accepting boyfriend. I didn't want to ruin this experience for him and didn't want to complain so kept right on walking. This symptom however was a very visual one and when he felt how swollen it was compared to the other knee we hobbled ourselves right over to IHOP and had some dinner or breakfast depending on how you look at it. The festivites were winding down anyway and the police were out in full force blocking streets anyway.

I have experienced some slight knee swelling in the past but never to the degree that I had that night. Usually it was more of a full feeling above my knees that would go away in a couple of hours without any pain sort of like if your ankles swelled up or something. Well, I went home and spent the next day almost completely off my feet. The swelling went away and my knee popped a few times. I did some online research and discovered that a swelling above the knee might be bursitis. Those succeptible to getting it include those with thyroid disease. I had suspected as such. I kind of in the back of my head thought it was an autoimmune flareup or something of the sort. The question is what exactly does it mean? Does it mean that I need more Synthroid because my hormones are once again out of whack? Does it mean that my antibodies are finding new tissue to destroy migrating from my throat to my knee? Is it the start of a more sinister autoimmune disease like rheumatoid arthritis?

I need to ask my doctor on the next visit. I do see my Endocrinologist for a blood test in a couple of days. I'll mention this to her and see what she has to say.

Take Two Pills and Call Me in the Morning...

There are a lot of people (and even some doctors!) who believe that once you take the required meds prescribed for your ailment you should feel absolutely perfect again. You are "cured!" This is sadly not the case for those suffering from an autoimmune disease or any chronic illness. There is often no cure and symptoms are only managed sometimes.

I take a .112 mg Synthroid pill religiously every single morning upon waking. It makes up for the hormones that my dying thyroid no longer makes. My own body is destroying it. I sometimes wonder why my body chose to attack the thyroid gland as opposed to another organ or body part. The hormones help keep everything functioning pretty normally and I definitely see the difference back from when I was first diagnosed. My hair no longer falls out in clumps leaving a bald spot right in front, I don't feel as deathly fatigued as I once did, my skin is no longer extremely dry, my heart, kidneys, liver are functioning normally and I managed to lose a bit of weight which I put on just thinking about food when my thyroid functioning was way down. I also am no longer extremely depressed. I do have my moments though and sometimes still feel like I can't concentrate well. I feel downright stupid sometimes and I'm certainly not. I graduated at the top of my class with honors in College despite everything. I sometimes feel achy. My muscles hurt. I lift my arm to reach something or to wash my hair and ouch. I feel extreme fatigue some days and there's no logical reason for it. I feel dizzy out of nowhere and get migraines for days.

I suspect the days I have these terrible symptoms my immune system is at peak performance wreaking havoc on my body. Sneaky. Very sneaky. I'll have lapses of time, usually a couple of weeks, where I can't believe how good I feel and deny that I'm even sick. And then the good times will be snatched away from me once again. It's not fair and I pine for them to return. Then again I've learned to view it as my downtime where I rest up and ponder all the things that I'll do when I feel up to it again. It's the cycle of life I suppose.

Ah The Mystery...

I have been toying with the idea of starting a blog about autoimmune disease for some time now. I love to write and felt I needed to express my thoughts and feelings on this subject hopefully reaching others who have had similar experiences. I have Hashimoto's Thryoiditis and was formally diagnosed in 2006 even though looking back I can see that I have exerienced its symptoms for far longer.

I also got tired and was bewildered at how many people had no idea what the thyroid gland was and what it did. We ALL have one, male and female alike! Indeed, even some doctors I have visited seemed to marvel at the elusive thyroid gland. Did they skip that chapter in medical school? Even in my own schooling other organ systems were extensively covered such as the cardiovascular, skeletal, digestive... yet there was only a mere mention of the endocrine one. How mysterious.... Don't even get me started on autoimmune disease. Auto what?

I find it outrageous that certain other diseases seem to get top billing over the more widespread and deadly ones but that's a whole other blog isn't it? I read somewhere that the reason that other diseases, in particular autoimmune ones, don't get the recognition that they deserve is that they are not sexy. Hmmmm I guess no one wants to hear about fatigue, hair falling out, deathly palor, depression, constipation which are usually experienced on a daily basis, mind you. Yes, I can see why most people would rather not talk about these less than glamorous symptoms.

There have been countless times over the years where I searched the net for people who were going through the same thing mostly to prove to myself that I was not alone. I could relate to some and found lots of helpful advice along the way. I always felt that the search was the most exhausting part of all however. Why are autoimmune diseases so underground? Again, the mystery.... Maybe it's like a secret club. Most of us who have one might not even look sick all the time. Then again, when we do we REALLY do. I can't tell you how many times I suspect someone looking at me for the first time probaly thought I was a drug addict. Uggh. It's a silent, underground, covert operation of a network of diseases... shhhh. Well, I for one think it's time to speak up about it and bring about awareness.