Chronic Illness

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


This first Appeared on The Dragon Slayer ....MOMMY about a Year ago when I created this blog, as I have recently added a chronic illness "Tab" to my blog for those of you whoa re here specifically for matters dealing with chronic illness I am reposting this for easy reference as many of the early medically centered postings have been buried by reviews in the last year, from this point forward all things to do with Chronic illness including reviews, posts, articles And giveaways will also be added to the chronic illness tab , for those of you whoa re here only for box reviews, you can skip this post all together or read it the way I read it as a love letter from my husband...






June 18, 2011

My wife asked me to write about being a caregiver.  This isn't the easiest task for me... I would rather work on our daughter’s car, mow the lawn... or even clean the litter boxes for our cats.

sigh... What do I say?  What can be said...

Living with Adult Onset Still’s Disease hasn’t been the easy for anyone in the family.  It isn't  something that is just limited to a loved one... it is a chronic disease that effects everyone.

I met my wife 3 years ago (June 15, 2008)... almost a year later (April 2009), we started to really pay attention to her health.  We became more consciences of her fevers, fatigue, aches and pains... visiting doctor after doctor.

1st step was the PCP (primary care physician) who has been a friend of my wife’s for years.  Her PCP ran test after test... couldn’t figure it out... and I could see the stress, frustration and sorrow in her eyes.  Being a doctor and a friend, but not able to figure out what she had... or stop the symptoms... makes a doctor “ungod” like.

Referred to a specialist (Oncologist/Infectious Disease).... more and more test.  I sat and watched a bone marrow biopsy performed on my wife.  I could never imagine or express the horror of watching that.  All I can say is that I would never do that for myself.  I am not as strong as she is.

After roughly 6 months of testing (over $250K worth of testing) which included the bone marrow biopsy and a nuclear gallium scan... the best he could tell us was “but you don’t look toxic!).

That 12 month period was very stressful, frustrating and anger-filled. I never blamed my wife for her illness... I blamed myself for not being able to fix her.  I prided myself  with being the “guy that solved problems”.  When friends had problems, they would talk to me... I always had a good solution and was willing to help in any way. 
Every day that my wife was sick... the more and more I  continued to hate myself for  not being “man-enough” to take care of her, let alone protect her for getting worse...

We took a break from doctors and testing to get through the holidays..  It wasn't my idea, it was her’s and I didn't like it, but after watching the bone marrow biopsy.  I couldn't argue with her.  I wanted to do what so many people do and just bury my head in the sand and wait for the illness to pass.

It doesn’t....

In January 2010, her PCP referred her to a Oncologist for a 2nd opinion.  Everyone kept saying, “IT HAD TO BE CANCER”

The 2nd Oncologist reviewed everything, ran new blood test and started looking for answers... nothing could be explained.  Then in October, the Oncologist noticed a rash on my wifes chest.  She thought it my be related to rheumetaligical issues and suggested she have a Rheumetalogist run some test.

We set the appointment for November 2010.

This appointment would change everything for us....

We did all the basics when you see a doctor.  Temp, weight, blood pressure, etc.  After we finished with the nurses, the doctor came in to the room.

Have you ever seen the TV show House?  This guy was house times 50!

He told us that he wanted to hear her whole story from the beginning.. and he brought us  to his office.  This was very different for me, I have never had a doctor ask us to move from a exam room to his own office.  I was extremely nervous, wary and my strength was failing every step.  The only time I would see people speaking with their doctor on TV, is when there is really bad news... and I really wasn't strong enough to absorb any more bad news when it came to my wife’s heath.

We went to his office and sat down.  He sat behind his desk and pulled out a yellow legal pad and told my wife to start from the beginning as far back as she can remember.

She started talking... he started writing things down... for the next 40 minutes... it was the whole story again... reliving the suffering she had endured... the Rheumatologist writing down things and  typing on his computer... write it down, type, write it down, type. 

I looked around his office during this strange process and looked at the framed articles and journal covers all over the walls. I wasn't sitting with a guy that barely passed his test and took medicine and patients for granted or amusing toys to play with.  This specialist... IS THE SPECIALIST.

This brought me back to the dialog between him and my wife.  He is typing and typing, asking questions about her fever, how long she has had a fever, her pains and where, how long her white blood cell count was 2-3 times the normal range.  All this time, he is typing, printing, taking notes on the yellow legal pad.  He only stopped twice... to give us print outs of what he thought she disease was and why.  At first, he thought it was a genetic fever disorder... then as the story winded down... he printed out information on Adult Onset Still’s Disease.

By the time we left his office... he was 90% sure she had (AOSD).  I wasn’t sure... my head was still spinning with the realization that we my have found a doctor that might be able to help with my wife’s suffering, but possibly put it in check. 
The one statement that I will always remember from that visit.  My wife said that she could deal with the pain, joint stiffness, fatigue, etc...  she just wanted the fever to stop.  The Rumetologist stopped typing, turned and faced her and told her that he can definitely stop the fevers.

I wanted to break down in tears... all the suffering she gone through... she would accept everything, if only the fevers could be controlled.  Across a wooden desk is a doctor that not only says he can stop the fever, but looks her directly in the eyes with complete confidence and conviction to do exactly what he said.  He WILL stop the fever.

We left that appointment with a glimmer of hope and excitement.  I even commented to her that I felt like I was just on an episode of House.

Over the next few weeks the rheumatologist began the process of getting approval from our health insurance to use a bio-med injection to treat her illness.  He would say that she definitely had AOSD, because there currently isn't an exact test that can confirm 100% for AOSD.

Our health insurance would approve the bio-med injections, only if my wife failed on Methotrexate (as we call it “Demon Pills”).  She started the demon pills immediately.  This was definitely not a pleasant time for us.  Each week, she would take the pills on Friday, so he didn't have to miss work and would have the whole weekend to recover.  I would have to sit by (helpless all over again) and watch this chemo drug suck the life out of my wife.  The one person in this world that I would move heaven and earth for... laid in bed , fighting for her life , her right to see her kids continue to grow up, wanting to see both daughters graduation from high school, college, get married and eventually hold her grandbabies.  There is nothing more frustrating... then being helpless when the people you love need you the most. 

After a couple weeks, I finally convinced her that she couldn’t work while she is taking demon pills.  She filed for FMLA and her Rheumatologist finally signed off for her to take  the time off.

It was either FMLA or she was going to have to quit her job.  I knew she couldn't do both, but she loves, truly loves what she does and it was heart breaking for her to  take the time off. 

She was finally able to focus on living, instead of making it a  minor priority, always behind  everything else.  Living was finally a priority for her.  It was a reality check for me … I  never worried about living or dying.  I was still young, in good health, ect...  just like so many people, who don’t have to worry about chronic illness. 

Living with Chronic illness, even when it isn’t mine is still tough.  I am only as strong or weak as she is.  When she has a bad day, I have a bad day.  When she is in so much pain, just trying to go from the bed to the bathroom (maybe 15 feet), it stops  everything for me.  My life  is put on hold, just as much as her life.  The little things that are taken for granted... like me typing this story, dressing yourself, having the strength to get out of a bathtub.  All the things that I  take for granted each day, now I am very conscious of them. 

After 2 months, our health insurance finally agreed that the demon pills were not doing enough, they approved the bio-med injections.  The prescription was sent to the pharmacy and  it took the pharmacy 3 days to get a 30 day supply of  bio-med injections. 

5 days later, F-I-VE  days, my wife was FEVER FREE!

I never thought the fever would go away... and it was finally gone.  I truly can’t express the happiness, relief, joy, all the emotions that I felt when she took her temperture.  She took her temperature multiple times though out the day, and coming days to be sure.  He did what he said he would do... he stopped the fever... now what else would this injection control?

My wife hasn’t stopped taking the demon pills... she is afraid to stop, the joint pains are not as bad and she is willing to feel like death warmed over each weekend so she can take her life back during the week.  This is the price we will pay to give her some of her life back.

She still isn't allowed to do anything around the house... she is supposed to rest as much as possible.  This has been a challenge, my wife is very, very stubborn.  She want to do things around the house, like cook and clean and laundry... it usually happens when I am at work or busy outside.  Unfortunately, the fatigue overwhelms her every time and it will take a day or two for her to get over it.  sigh  :(

I knew my wife 10 months before really got sick... I had fallen in love with her within 3 months of meeting her.  I married her exactly one year after I met her, because I knew I couldn’t be without her.  Dealing with the chronic illness has been hard on all of us.  I bottle up most of my frustration, anger and helplessness.  I have to be the strong one... the rock, no matter what happens.  I can’t have her walking this path alone.  For every bad day, I have memories of good ones... more and more good memories are being stored now that we have the fever under control. I only leave her side when I am at work or I have to run errands.  I prefer not to leave her alone for too long, in case something happens.  When I am away from her, I stay in a constant state of worry.  Will she try to take a bath with me being home, will she fall... will she drop something and hurt herself.  The thoughts that never used to run through my head, circle my brain every minute of every day.

When I am with her... it is like the whole world stops.  The power she has over me is incredible.  A smile can make my heart skip a beat, a touch is like heaven.  She is the calm in the chaos that is our world.   It’s strange to think about my wife being so sick, yet she is the medicine I need to stop my pain.  A role reversal...

I think about the spoon story daily... has she saved some spoons for later?  Probably not.  She lives life to the fullest, given the hand she was dealt.  I can’t blame her for wanting to have a “Normal” life again. 
Most of our life together has been with the illness, so this isn't’ abnormal for me.  I just look at her and thank god that I found her..

There are days when I really don’t want to get out of bed, but she needs her meds and food .  I get up and get it, so she doesn't have to suffer.  I start a bath for her every morning, so she can soak the soreness away, as much as possible.  I have learned to love epsom salt and  bath scents...because I know it makes her happy and helps the pain.  To the inventor of Claritin.... you are one of my heros.  Chlaritin helps with the big red blotches that surface around the bio-med injection sites.

The stages of grief are real, and after reading them (because she made me) I can come to grips with my own emotions and understand her emotions and feelings  a little better.

A good day for us... her pain level is under 3-4, temp stays below 99,5 F, and she can leave the house and get out for some fresh air.,. anything more is just a blessing.  I don’t try to push her, she knows her body way better than I do, so I follow her beat not the other way around.

I still have moments of weakness... anger, frustration, build up rage will leak out of the lock box that I pushed it all in... I am only human.  When I am in one of these moods, she will come and sit next to me... and I can’t keep help but start to relax, and dispurse the negative feelings.  She doesn’t need words... just her being next to me lets the pressure out and I can regain myself.

I wouldn’t give her up for anything, ever.  This is our love, our life and OUR illness.  We combat it together, not seperate.  We’re just two people carving a life together, no matter what obstacles are in front of us, we know that we will overcome everything.... together.

1 comment:

  1. Thank you for sharing your story. I send prayers and my best wishes! I too suffer from chronic auto-immune disease....for the past 40 years. (a few different types of arthritis, chronically sore joints, body rashes, chrones, fatigue...previously lung and blood diseases.) It does take a Dragon Slayer approach to living. Have you ever heard of the artist group Story People? They have a Dragon Slayer picture/quote. (Written in tribute to 9/11) titled Real Hero. It reads...."Anyone can slay a dragon, he told me, but try waking up every morning and loving the world all over again. That's what takes a real hero." May you do just that. Don't grow weary. Live your life....being leaders in LOVE!