Be mindful of your focus
It was difficult during that time . And now, we all in a very difficult time together. And unfortunately, this landscape will be the “normal” for a while. I know you have the strength to get through this difficult time. You ask how I know this? It’s because we all have been through awful things in our life. Misfortunes, loss, illness, bad choices, regrets that caused so much pain and tears. And this makes me feel hopeful. Why? Because this means that we have survived awful things already and lived!! We were mindful to get through those bad times. We were mindful of the situation and we trudged on through. And we will get through this too. We are stronger than we know, we forget to look back on the triumphs over painful and horrible times we have already endured, and we survived them. We will get through this and we will be stronger. We will be more educated about our personal strength, physically, mentally, spiritually, emotionally. And we will gain a perspective that will help others in the future. We will tell them, “you will get through this and you will be stronger than ever. You know how I know this? Because I survived a very hard time and you will too.
Love to all this time.♥️
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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.
I’m so thankful to have found your blog! So far my doctors all believe that I have this disease, it has yet to be diagnosed by a rheumatologist. I have more virtual appointments coming up and this is what I’ve been waiting for. A name for this evil disease, although doesn’t make it any better. It started a week after I gave birth to my second son and it’s been close to 7 months now. I keep looking for the light at the end of tunnel wanting all of this to end, even when they tell me it can only be managed. Reading your stories brings tears to my eyes and somewhat comfort. How long was it before you got your medication right? Is there any advice you can give me? Tips. Today is another bad day so anything would help. Thank you so much and I wish you all the best.
Good Morning Elanna, I am so sorry you are suffering with these symptoms. I completely understand how you feel about having mixed feelings. It is both a gift of knowing and a curse of knowing. But knowing and giving it a name/diagnosis also gives us power. When I think back on my 1st flare, that came on like an inferno and went on for months, I recall the desperation of trying to find out what I had. I had fear. I had the endless torture of the symptoms, but somehow I also had strength and knowledge in my soul that I was a strong person. This emotional strength would help me through the hardest time in my life in 2008. I admit, selfishly, at the darkest days of the struggle in the hospital, I had fallen into a deep dark cave of uncertainty. But just then, I would gain a feeling of faith and hope. The best advice I can give regarding the flares may seem strange but here it goes. 1) have 100% cotton towels on your bed and extras when the fever breaks. My fevers were up to 103. It was awful. 2) Put extra pillow cases near your bed and a cotton towel on the pillow. Some nights I would just use folded up towels as my pillow. 3)When the fever breaks, take off your drenched night clothes and have a 100% cotton robe ready to put on immediately. This will keep you warm you and keep your joints warm when, and if, they are searing hot and can become painful. Then sleep the rest of the night in the robe. 4) Know your flare marker time. Mine is 7pm. At 6:45 I can immediately know that the flare will come on at 7pm. Some people have twice a day flares. I pray that you do not. Some people will only have one flare and then, never, ever flare again. And then there are some people, such as myself who will flare, and then they get it under control and can go months even years, as I did for 8 years without a flare until I broke my leg, and then had heat stroke in one year. 😩 UGH.
And the 3rd type is a chronic flare process.
4) Eat as clean as possible. During a flare I use an app that lists inflammatory foods and ranks them. I believe it is called: Inflammatory Tracker. I eliminate all flour, sugar, processed foods.
The best thing I can recommend is, know your fatigue level. Learn exactly what your limit is and then rest. Never be afraid to back out of events, social invites, obligations that will over fatigue you. This includes emotional fatigue and stress. I have learned to ask for help. This was so hard for me, as I am over-zealous and love to keep busy. I hope your MD begins medication soon. When I feel very cold, and begin to require many hours of sleep, I know I need labs drawn. I begin immediately on Medrol (I am allergic to prednisone. Something in the generic is bad for me and I hallucinate. Strange.) and then I taper and begin Methotrexate injections into my abdomen. I know that some AOSD sufferers have different results and require trials of different meds. For some reason, the basic route works well for me. I truly hope that it does for you too.
Sending up good vibes and a prayer that you get your diagnosis and begin to feel better soon. Please keep me posted.
Be well and healthy soon my friend.