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|Posted By : hanginin - 4/27/2017 7:05 AM|
|Good day everyone, wishing you all a really good day.|
I am new here, well I have posted but long ago before I really knew fibro.
I have a messed up immune system with much going on. Hypothyroid, Addison's Disease, Sjogren's, Lupus, IgA deficiency and recently Idiopathic Thrombicytopenia Pupura ITP for short just means low platelets and of coarse fibromyalgia. I don't dwell on it as it gets me nowhere but just so you know where I am coming from.
My life has also been a crazy as my health history.
I was a caregiver for my dan and mom who were both diagnosed with cancer literally one after the other. I cared for them for 8 years. My husband and brother were there always as well. My brother lived at the homestead with my parents. My brother and I very close. So after finally losing our parents we began to find a new normal after about 3 years. But one evening my brother called to me in my heart while I took my dog for a walk at a nearby park. He told me he needed me and needed me to come find him. It was surreal. When I returned home I walked to the farm to check on my brother thinking I was just being over protective. But after searching and not finding him it began to get dark so I ran to get my husband to help. We eventually found my dear brother laying still near a fence line he was clearing. He had been struck by a branch that fell from a tree. He was gone. I cannot describe the pain and the grief. He loved the family farm like his dad and his grandfather before him. My husband and I living just off the farm, we felt we could not make an appropriate desicion to sell the farm at that time so decided to buy it and hold it until we felt better.
It ends up that we renovated the farmhouse, it's beautiful, and the farm is 70 acres of trails, tres and creeks. We decided to retire here. So for four years we renovated slowly as money and time allowed. I also looked after my brother 's estate. Then last year about this time I got a call from my rheumy stating my blood platelets had dropped.The protocol for ITP is high dose Prednisone, so I was given 80mg daily and then tapered down in a three month time span. I have to say it was the most hideous thing I have ever gone through. And when it did not keep the platelets up I had to repeat it 3 times. To no avail I then was told I would need to do chemo. So that was the next treat....regardless I am happy to report the ITP is now in remission. But 2016 was not friendly to me. Since the Rituxan ending in February I have developed terrible firbromyalgia. I can't seem to do the mindfulness coping with it as the grip so so intense that "I am pain" period. So I have 25mg of lyrica and can take them as needed. So usually 50mg at night and 25mg in the day. It makes me so sleepy though.
I just want to live. We are in our lovely little farmhouse, where my parents and my brother walk with me each day through the fields and while I sit next to the fireplace and look out the big window over the creek and the feeding station. We get all kinds of birds and rabbits, ducks, chipmunks and squirrels.
But it has all hit me now that things have slowed down, like a ton of bricks. My brain is still in 2013 when it all began. The reno helped me survive it all but my body has paid. I grieve so badly some days and I think it is what brings on the fibro pain. Anxiety seems to trigger the fibro. I am not good at fibro like I am all the rest but it's because the pain traps me and makes it impossible to do much to keep busy so I spend allot more time just sitting and thinking.
My story is long and I thank you for reading this novel, and if you might have some suggestions about the situation I find myself now in I sure would like to hear from you. Thank you, keep on.
|Posted By : Ljm2014 - 4/30/2017 11:24 AM|
Thanks for sharing your story with us..
I am not familiar with the auto immune issues, but fibromyalgia is quite a challenge..
Many of us have more than one issue of course, so it often hard to know which symptom is from what.
We certainly feel worse when we are stressed ,and you shared quite a bit...
If you read fibro 101 it lists most of our symptoms, fortunately everyone does not have the whole list, or certainly not all at once..
Being ill can be overwleming at times, but we can only take each day and try to learn what makes us feel improved..
Ask any fibro questions here...our forum has been a little quiet recently ..maybe just people getting busier with the weather improving