Living with a disease ‘almost’ in remission
This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A constant weigh scale of what I want to do and what my body will allow me to do. Choices I am constantly weighing. This is why I decline many invitations. My energy makes me parcel out carefully my energy for daily tasks or risk a terrifying flare, extreme pain and many medications that make me sick along with many emergency room visits to stay alive. But still, this is not a sad post, life is beautiful I have so much love and I stay joyful, happy and cheerful. So extremely grateful to be alive every single day 🙏🏼❤️
Stay healthy my friends.
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Wow. I have just spent the past hour reading about your Still’s Journey. Big heart hugs to you. I was recently diagnosed with Still’s Disease after having two weeks of cycling fevers of 101-103 up to three times a day. I couldn’t walk and ended up spending a week in the hospital. While I was there a week, I was lucky to have a team of doctor’s figure it out. It was actually the infectious disease dr that thought of Still’s and they did every test and lots of blood work to figure it out. I’ve been out of the hospital for two weeks now and am on prednisone and have been doing the auto immune diet. It has been hard for me given that I was mostly a vegetarian before this, but I’m trying to eat a little bit of meat. It’s just so hard to cut so many things out. I miss bread and butter so badly and cheese. I have been cheating though and getting some almond and walnut butter in so I can add that to my smoothies. The internet is overhwhelming with information.
I’m 35 and have been super healthy until now. I work with kids and on a farm, so this has been so frustrating. I’m upset with how my body can go from feeling good to bad within an hour — how I can still have a fever or these ridiculous rashes. They are so distinct.
I am scared to have flare up again. I am scared of getting off the steroids and being put on a stronger drug. I don’t want to lose my hair! I’m also terrified because I currently have an IUD and will need to get that replaced in the coming months — which the Dr. said will need to wait so the immune system doesn’t freak out.
Also, how do they handle the whole immune system thing? I really want to go back to my art job with the kids, but will my immune system be too weak to be around them? It seems crazy to suppress the immune system, I don’t want to pick up anything else along the way.
Sorry, now I’m just rambling on this corner of the internet. Thank you for your blog and writing all of your pain. I’m sorry you experienced that trauma and I hope you are feeling better.
Reading your words makes me feel a little less insane as I constantly carry a thermometer and freak out when the numbers go over 98.6…
Would love any insights you have that you may not have offered already.
Dear Kim, I completely understand your paranoia. I am so sorry you are experiencing this awful disease. I read in your comment that you are very active and work on a farm. I too, know this frustration all too well. I have horses and the barn is my life.
My feelings are that you will need a lot more rest. From my own experience, I have learned that I can not pick up the pace until the rashes are fevers are gone, or else I am just not letting my body heal and recover. Please rest dear.
I found that while on methotrexate for months, i lost very little hair. I did eat a balanced diet of protein with vegetables, grains, tofu, beans, protein shakes, fish.
I used to work in the hospital until my last flare (and a broken leg at the same time…. UGH😖. The flare came on due to the extreme pain for so many months). But it became too risky until my body was in full remssion. I miss my career so much.
You can work with kiddos, but if it were me, I would watch very closely if one of the kids has a cold. Thsi can be hard on your body if you get a cold during a flare.
Please, please take to rest. I know how hard this. I am the worst at resting and just end up going backwards.
If you want to eat some cheese, I would do it. I just feel that if the food I am craving makes me feel better, then its boosting my immune system fromjust feeling happy. The only thing, after all these years that hurts me teh most is wheat. For some reason, wheat during a flare makes things worse for me. BUt i found that dairy actualy doesnt hurt me at all. But, we are different. Try a bit of this and that and you wil see what hurts and what makes things worse.
Best wishes to you💟
Please rest 🌻
Dear Claudine- I am so thankful for your posts and your honesty. I went back and read a previous post of yours, too. Your journey is going forward but I know not at the pace you want. I wish there were words to make it all better for you. This disease hangs over us, even when not flaring, as a dark dragon that can appear out of no where–as you know. I have been doing well. My numbers have been normal but creeping up. My last check up was good with better numbers. I get the warnings though–the little hacking cough; the joint aches in the same joints that were so inflamed one time; the faint rash. I will be traveling out of the country and am terrified. I talked to my rheumy about it; he assured me I would be fine. I hope he’s right; the jet lag scares me.
Pray that your joyful, happy, cheerful self will be well soon. I know you already do so many anti-inflammatory things for yourself. I drink my tumeric ginger tea even in the summer and I think Sally said, omega 3 high does.
Dearest Patty, I am glad that you are doing well except for the mild rash on your legs. This makes me sad. Whenever I have a faint rash. I know the rest of the dragon is not far behind. In my mind, it’s like the rest of the dragon is behind the curtain, ready to pounce.
Please take care when traveling. It’s so exhausting and can make things very bad. I am so cautious that I travel with Medrol in a 10 day ready pack just in case. Please take your meds and be prepared.
I love the idea of teas. I drink a DeTox tea daily after my cup of beloved coffee! Must have coffee!!
My husband travels out of the country often for work. Although I would love to join, he knows that my health is most important. I do join him if he stays for more than a week and I can rest often.
I totally understand your concern. Traveling is not as fun as it used to be.
I do believe that Omegas have helped me. After I changed my diet to salmon, chicken and mostly vegetables I do feel better. Although, Cheetos still call my name !! Once in a while I do indulge (SHhhhh! Don’t tell!!) However, I try very hard to stick with salmon, chicken, lean meats, whole grains, nonfat dairy and nuts and seeds for snacks.
I hope your travel is lovely !
Please stay healthy❤️
Thank you for being there during my most difficult times.