Saturday, February 15, 2014

My Orginal Leter/thoughts on my AOSD diagnosis as it was written to family and friends several years ago

My reason's for slaying dragons every day!

I was told it was impossible...but here was the day...adoption day!

This appeared here on The Dragon Slayer ....MOMMY!!!! when I first created the blog, long before I ever started reviewing products and this was just a blog about being a chronically ill mommy....
I am reposting now and placing it in the newly created "Chronic Illness" page tab for those of my readers who are here specifically to find information, support and reviews regarding their life as a Dragon Slayer or Spoonie.

And for those of you just here for the review and giveaways, you can pass this one over or you may find that by reading this you understand what someone if YOUR life is going through a bit more...

Letter to friends/Family about my AOSD diagnosis

ok, a little back story on the following letter i wrote to my friends and family a few years ago about aosd and how it effected my life, relationships and thought process....

This was written early on in my diagnosis after an exhausting 2 year journey to find the answer to "what is wrong with me" we had been told I had everything from leukemia to some rare disease you can only get in the jungle and everything in between.... it was a relief to finally have a name to call this thing that had taken over my body but at the same time I had to realize now that I knew what it was I  also knew I wasn't going to get well...and in all likelihood I would only get worse over the years... Many things have changed sine I wrote this my meds, are a big change I now take 47 pills a day (thank You  Beth for counting them), 1 injection a week and 1 infusion every two weeks . I am unable to work now because my immune system is so messed up that when I leave my home I get sick (even to go grocery shopping I end up with Strep),  we have adopted a baby (well now he is a toddler), built a house in the country (that is handicapped friendly) ,and I have come to a deeper understanding of my illness and have a better attitude about my life and my future..... Over the last few years within  my Still's community many of my fellow Dragon Slayers have used my words as written below or changed it up a bit to explain this journey and their new reality to their friends and family, I never expected the frustration and flood of emotions that led me to write this letter to those in my life to have such an impact on others with my Disease , but I am happy that they have been able to use it to help themselves express how they feel because at the end of the day all a Dragon Slayer wants is someone to UNDERSTAND what it is to live this life we have been thrown into without warning so here is the letter I wrote shortly after my diagnosis...

An open letter to family and friends,

Still’s Disease, or in my case Adult Onset Still’s Disease is a rare rheumatological autoimmune disorder that combines lupus and rheumatoid arthritis in to one big ball of fun with a some added bonuses like organ failure (heart, lungs and liver) for a few extra laughs. It is a very rare disease that only effects 0.00006% of the world’s population and is incredibly difficult to diagnose which is why I was sick for a couple of years before starting treatment. I am very lucky to have such a wonderful team of doctors taking care of me and am one of the fortunate few who can receive treatment “at home” instead of flying to Mayo or Johns Hopkins for treatment. We live in such a medically advanced area and I am lucky to have cutting edge medical schools and research nearby when I talk to others in my international support group I realize how lucky I am to have such great doctors close to home.

In the spirit of informing those who wish to understand......These are the things that I would like you to understand about me before you judge me..

I am scared. I don't know what the future holds for me. Will I always be in pain, fatigued and feverish and suffer from the other symptoms this disease throws at me or will I be one of the lucky ones, who may get a remission? I take so many meds that have terrifying side effects. I take everything from prescription strength vitamins to chemo drugs and everything in between (most days about 30 pills a day, chemo days it is closer to 45 pills a day and will be starting daily injections as well in a few days) as I am sure you can imagine I am scared to death since the very things I take to get better make me sick and cause a whole new set of problems that I then have to take meds for. If you find me being quiet and reflective, please don't think I am upset with you or even depressed. I am simply trying to sort out my fears and figure out where my life is going next as all of my plans for my future were based on a future where I was not sick, I am basically starting over now.

I am angry. Still’s has taken so much away from me, mostly my health, my independence and my dreams I am struggling to figure out who I am and how I can contribute to the world now. I can no longer do many of things I enjoy doing, even the simplest and most innocent of things can make my pain a lot worse, cause my fevers to spike or cause me to be so exhausted I can’t lift a glass of water. I have difficulty just completing simple tasks. If I appear angry please understand it is Still’s I am angry with, not you.

Please understand that having Still’s doesn't mean I'm not still a human being. I spend most of my day being very careful about what I do, and being in constant pain, exhausted and feverish and if you stop by I might not seem like much fun to be with, but I'm still me… stuck inside this body. I still worry about my kids, family, work and friends etc., and I'd still like to hear you talk about yours too. I am still me I just tend to be focused on my health right now, but please talk to me about your life, the latest book, sports….ANYTHING that keeps me connected to the “real world” I don’t want it to be “all about me” and if I do that please tell me so and change the subject sometimes I get so wrapped up in my quest for remission and knowledge about my disease I tend to go on and on…..for that I apologize and give you permission to tell me when I do it because right now my main focus is research and treatment, just as a new mom can only think of and talk about her baby, this disease takes center stage in my thoughts right now.
Please don't tell me you know how I feel…..You don't…….Don't offer me sympathy; I don't want your pity. But please, do offer me support and understanding, which I appreciate. I know most of the time I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with a lot of invisible pain, fatigue and other symptoms. Even on a good day I feel like you do when you have the flu plus at the same time like someone lit me on fire, while electrocuting me and hitting me with a hammer. Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (Still’s has NO cure, while some can get a remission it is very unlikely if it wasn't diagnosed and treated in the first couple of months and most with this disease are not lucky enough for this to happen, it takes years). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it simply means I'm happy. That's all….. don’t read too much into it…..I may be tired. I may be in pain. I may be worse than ever but just happy. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. I can still be happy even if I can’t “get better”.

Still’s and symptoms of it may change very suddenly, meaning I may need to cancel plans at the last minute, if this happens please do not take it personally. Please remember I am in pain and pretty exhausted every second of everyday and it is constantly there, and while it does fluctuate in intensity it NEVER goes away EVER. I NEVER get a break from it or the ever so popular fevers that cause me to have chills and hot flashes (just try to imagine temps up to 103 or 104 every day of your life for a couple of years….thankfully with the “demon pills” I have started running 102 or less most days)

Please understand that "getting out and doing things" does make me feel a lot better because I need to get out and “feel normal” I enjoy seeing my family and friends, but it can often make me or should I say make my symptoms worse. I will gladly spend some time with my friends and family knowing I will “pay for it later” but understand when I say that I need to rest or stop and take my meds that I do mean now, not later….I tend to push myself way too far before I say I need meds or need to rest so if I am saying it then I should have done it quite a while ago so please don’t make me feel guilty for needing “a break” - it can't be put off or forgotten just because I'm doing something else more exciting and fun….. Still’s does not forgive its victims easily and pushing beyond my limits is something I will always do, but when my body is done….it is done no matter what my mind says.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put your life on hold for a week or two while you get well. But an important part of having a chronic illness like Still’s is coming to the realization that you have to spend energy on having a life while being sick. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with any chronic illness so if I do things that are “normal” it does not mean that I am not sick anymore, just that I am trying to live my life.

Finally, please remember that I am the same person I was before I started suffering from and was diagnosed with this. Still’s doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me or hate me just as you did before. 

I need lots of love, understanding, support and hugs

But most importantly, I need you to understand me

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