RSS

Sunrise, Sunset

15 Nov

I have not updated the blog for far too long. It is early morning and i have a work day ahead of me. I am healthy and have energy to do this. I love my career. I am an occupational therapist for a large inner city hospital. It is what I was meant to do, it is my calling.

Sometimes, I desire to update this journal, and then a strange apprehension comes over me. It should be the opposite feeling. Everything is going well with the body, no fevers, no rash, no joint pain.

I do well as long as I monitor my fatigue levels, my energy expenditure and my sleep. I am still on my “superstitious dose” of 2.5mg MTX. I will stay on this one small forever, if this is all it takes to keep my mind at ease and the dragon away.

Those with AOSD, may also be on Facebook on the International Stills Foundation Group site or the Stills Disease Is An Inconvenience Facebook group list. And may have read that the late director of International Still’s Disease Foundation, Inc. Carole Triller has passed away recently after complications that arose from Still’s. You may read her beautiful memorial at http://www.stillsdisease.org. Go to the Memorial tab on the left hand side and then click on her name to read about this wonderful woman. She was a very caring person.

When I was diagnosed in 2008, I was in such tremendous pain. I was extremely scared and afraid of what I was going through. I could not bend my knees, or lift my shoulders, I had drenching sweats and chattering teeth with 103 fevers around the clock, the rash covered my entire body. Desperately trying to find an answer to my health, I found the International Stills Disease Foundation site about the same time I was given a diagnosis.

Everybody was so kind, they would write me back immediately. I would type crying, sobbing, in such pain in my body, and I would always, always get a reply within a few hours. The team knew what I was going through. They cared. They truly cared 100%. I received emails asking how I was. I was crumbling. My liver enzymes were dangerously high, my ferritin level was 14,000. I was vomiting constantly. I was, I am ashamed to say, I was suicidal. I am usually an upbeat person. But this disease was killing me. The team at Stills Foundation gave me hope as I struggled with taking high doses of steriods. They encouraged me to never give up. I felt their compassion. I felt their desire to help. I love the team there. They gave me hope. And I thrived. My desire now is to give encouragement to those who suffer, provide them some hope.

I am sorry I have not been attending to this site as I should have. I feel that reading notes and journal entries from somebody who has been there, truly been there, is comforting.

I will be there for others, as they have been there for me.

Take care my friends,

Claudine

 

10 responses to “Sunrise, Sunset

  1. RJ

    December 13, 2015 at 4:47 pm

    HI, I am 3 months into my original diagnosis for AOSD.I was under extreme stress before from work , home and other factors. My immune system dropped out and I didn’t see the signs in time. Don’t know if I could have prevented my condition from coming on but here I am. The pain, loss of motion, weight and drive is tough to handle. I been on predisone and methotrexate for 2 months and not much progress. My Dr. recommended Embryel as an addition to my present meds. Not liking the amount of meds and their possible side effects! My wife wants me to alter my diet to help also. This also isn’t easy to do. I have never had to deal with anything like this before, hence the rarity of the condition. Not sure what I am looking for here other than to know how others have treated and where they are now. I also was just turned down by my health provider from getting the Embryel .Yet another wonderful twist to my present direction. They stated in a letter to me that “this was not a medical decision “So tell me what decision is it? Venting yes, suggestions sure. Good luck and happy holidays to you all.RJ

     
    • stillsdiseaseblog

      December 23, 2015 at 3:11 am

      Hello RJ, I’m so very sorry that you are not feeling well. Regarding your diet, I didn’t believe that IF diet would help me and I was not happy about the limited choices from my favorite foods. However, after 2 years of repeated flares I had no choice but to try it or risk going on injections of methotrexate due to the amount I was taking weekly. I decided I had to do it to get my life back and do it as strictly as I could. The diet helped me reduce my inflammation tremendously. I never used prednisone due to my body did not like it and it caused a steroid psychosis that could have been lethal if my husband did not stop me from jumping off a balcony for a thought I had that I was boarding a hot air balloon. I was quickly changed to Medrol. Medrol was extremely expensive but worth it. I was wondering if your insurance might approve a different med than embrel?? Maybe another similar drug?? I hope the IF diet helps you. It’s hard to stick with but its better than joint pain and chills and fevers. When I started the steroids I was on such a high dosage for many weeks then tapered to methotrexate. I am hoping that someday soon you will have the same experience. Wishing you good health and comfort. Please keep me posted on your progress.

      Claudine

       
  2. Paula Schaadt

    February 28, 2015 at 1:37 pm

    Good to compare symptoms and confirm that I do have the “dragon”! Actually my 1st attack was in 2nd grade with a repeat in 6th grade. Of course In those days the dx was mono/strep. I spent many a night rotating from my bed, to mom and dads, to the couch, to the floor as my mom would rub my legs all night. I have had further episodes through the years. In 1990 I had the most acute flare which persisted for several months and numerous rheumatologist appts to no avail. Finally in 1991 I found my hero Dr. Taylor who is now deceased. He gave me the stills dx. In the years of 1990/1991 the flares very intense. Ended in the hosp numerous times. Completely immobilized…severe pain In my joints,rash, elevated temps every evening as high as 106.2 and severe abdominal pain due to the stills attaching my liver. Was give the chemotherapy drug nitrogen mustard along with methotrexate, imuran, high doses so solumedrol, plaquenil and who knows what else?!? At least thank God the nitrogen mustard treatments allowed me to not be in the paralyzed situation but a long road lie ahead of me. Was discharged from hosp to the nursing home where I am employed as a nurse. (Worked there for 28 years now.). I was off work for 6 months at that time. Cont. to have flares since then but mine as severe. Even had 2 visits to Heaven and back through the years! AMAZING! I require at least 10 hours of sleep a noc to be able to work full time though many nights I struggle to sleep due to leg pain. When I become too tired I immediately become achey all over, sore throat, fevers, fatigue and cry! (Of course that is embarrassing!). I am blessed and have a wonderful support system and Doctor!

     
    • stillsdiseaseblog

      February 28, 2015 at 2:57 pm

      Paula, I so happy you are doing well. It sounds like you suffered a long time before you were diagnosed. How painful it is to hear this, as it brings back memories of suffering without a diagnosis. Your fatigue symptoms sound similar to mine. When I get so very very tired I feel as if my body has completely run down to the last drop of fuel, I almost cry too. I care for patients so much, as I am sure you do too, that I push myself a little harder, then a little harder until I realize, when I sit down after a long day at the hospital, my teeth begin to chatter and I almost cry. The true humanitarian in us gives until it hurts. The strange thing is, when the teeth chattering happens, I do not have a fever, or joint pain. It just seems to be a remnant of the dragons life that appears to remind me of the past horror we with AOSD have suffered. I am so glad you are feeling well. Stay healthy my friend, Claudine

       
      • Paula Schaadu

        March 6, 2015 at 7:10 pm

        Thanks for commenting. I am wondering if you work full time and how you cope? I love my job but feel as though my life consists of work and sleep. Sometimes it depresses me. I am new at this computer stuff so bear with me girls. Please keep in touch and I will also. Comparing notes helps me realize I am not crazy and imagining all this. Thanks! Xxoo

         
      • Paula Schaadt

        March 6, 2015 at 10:06 pm

        Thanks for posting to me! I still don’t feel like the old me! I am wondering if you work full time? How do you handle it? I feel as though all I do is work and sleep!😞. My doctor has me on the durgesic patch and without it I can not put one foot in front of the other. I don’t mean to sound down as I truly am blessed! I have 5 great nieces and nephews that fill my heart with great joy daily! Also my beloved 83 year old spunky mom. And a multitude of other family lived ones and friends. Hope you have a blessed weekend. Here in Ohio it is cold and damp and snowy. Actually, I love the winter months. Thanks again!

         
  3. Ruth

    November 17, 2014 at 10:32 pm

    Your story sounds very similar to mine, It has been almost 4 years since I began the nightly fevers and pain and sweats, I was lucky that my doctors figured it out pretty quickly and I was started on Prednisone right away. I also live in Arizona. I am on a new medication that I hope will work, Actemra. I am still working but it is difficult. This is so frustrating to live with,

     
    • stillsdiseaseblog

      November 18, 2014 at 4:08 pm

      Hi Ruth, I am so glad that your doctors figured out quickly what you had. This is very lucky for you. Unfortunately,while I was hospitalized for 10 days then released home, it was still very unclear what I had 😦 It was only after another few months and tremendous suffering, I figured it out myself…but that is another story in itself which in my blog. Im just thankful, things are stable now. But as we all know, it can change at any time for many of us. I hope your medication continues to work for you. Most importantly, take time to rest, even if you do not feel especially tired. This has been my hardest lesson. But now I set limits. Take care. Wishing you good health.

       
  4. Patty

    November 16, 2014 at 10:22 pm

    I had just another thought–I know for myself, if I don’t see the words Adult Onset Still, I think I can almost deny I have the disease. So don’t be too hard on yourself, Claudine or others, if we don’t post. We may just need that time of protection…..

     
  5. Patty

    November 16, 2014 at 10:14 pm

    Dear Claudine,
    How funny that I found an email saying that there was a post in the blog! I was just thinking at the end of last week that I hadn’t seen anything for awhile and I needed to check the blog.

    What a joy to know that you are doing well on your “superstitious” dose, as well as with continued vigilance. I, too, am doing well and will soon approach the two year mark of my first flare. I will say that it is a fearful and happy time because as we all know–the dragon can return at anytime. I have weaned off all medication, except for one dose of an NSAID a day to help with the joint pain that is residual from the flare. Unfortunately, I did have my bone density done checked and the steroids and my postmenopausal stage in life combined to make me severely osteopenic (just about osteoporosis). So I am grateful that I can now be active and hopefully stop this progression, too.

    Thank you for sharing the information about Carole Triller. Besides her life, her memorial is also a reminder of the ravages of this disease.

    I, too want to continue to give back. I found this blog early on and later the Facebook page. All have been blessings to me to gain hope and confidence that life, on some level, can be normal. We all share so many things–especially that same thought that a new ache in a joint, or more fatigue, or even a little temperature might be the start of things. I even imagine I see the rash on my forearms and thigh–and maybe I do. But I try to heed these all as warnings!

    So good to hear from you and others, too.

    Lots to be thankful for this season.
    Thank you, Claudine. We will be here for you too
    Patty

     

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

 
%d bloggers like this: