I truly feel blessed to be part of this amazing blogging community. I cannot tell you how much all of your comments and emails mean to me. Sometimes I struggle with feeling like a foster child with no definitive diagnosis. I guess it really doesn't matter, does it? RA, lupus, Lyme, or fibro....whatever the heck I have....it hurts. And all of you understand pain.
I hope that I can be there for each and every one of you when you need someone. I hope I can pay it forward.
Thank you guys....for helping carry me through the darkest, most painful, days I have experienced with this illness. I'm doing better emotionally. The pain is still bad, but I'm not afraid to take a pain pill or two a day....and that makes a huge difference at this point. I am hopeful that I will get a diagnosis soon and then a treatment plan that works. Remission..or better yet a cure... would be a gift from God at this point.
I pray for that gift daily....for all of us.
Yay!!!! I'm so glad you are feeling better emotionally. Pain does take a lot out of us, doesn't it? Please keep us updated on your progress and know that you have a lot of people cheering you on!
ReplyDeleteYay, so glad you are feeling emotionally better! That makes all the difference! The book How to be Sick by Toni Bernhard really helped me get through the darkest days! XOXO
ReplyDelete~Alyson
I have to admit, you really put a scare into me with your last post. Please DON'T you EVER feel alone in this. Got it? Yes, we may not all meet face to face and connect thru little key strokes on a keyboard but I know personally this key stroke connection means alot more to me then some face to face relationships I have had for years and years. The support, connection and empathy is something I can't get anywhere else. Reach out anytime you need and I know I for one will be there to catch you. You are already paying it forward with your blog :-)
ReplyDeleteI don't think there is one person who lives with auto-immune disorders that does not have one of those days. Truly it is not easy and most people have little tolerance for anyone who is not well. People get caught up in their own lives and put others aside. It's up to the AAD community to lift each other up. Yesterday you, tomorrow might be another.
ReplyDeleteI do pray you will find an answer to what ails you. In my case, it took 10 years and now they haven't stopped dx'ing me. Oy but what is a girl to do? Eat chocolate, put on a good chick flick and bring out the flannel pj's and fuzzy slippers!
love and hugs
Tammy
I'm glad to hear that those dark clouds have passed. I hope that things continue to get only brighter from here on out, and that each new day brings you a little bit of emotional and physical relief.
ReplyDeleteI am so happy to read today's update from you! Thank you for letting us know you received our hugs and thoughts of care and compassion. I pray you continue to feel better, and get a definitive diagnosis soon.
ReplyDeleteIt's hard to not feel awful when the pain is awful and won't go away. But like everyone has said - you're not alone.
ReplyDeletei have given you my email and i do wish you would use it. i am in a flare right now and it hurts like a big dog - please don't ever think you are alone - again - caroltyree@live.com - use it!!!
ReplyDeleteYou are not alone in this, we have a mighty big community and it is growing more and more each day. Pain is something you can't really explain to anyone who hasn't experienced what you are experiencing. I know, I have RA and Sjogren's syndrome went through many years of misdiagnosis and doc's who thought I was crazy or depressed or seeking pain med's. It was nice to finally be able to name the pain but unfortunately it didn't remove the pain from my life. Be strong and keep writing!
ReplyDeleteCaring thoughts. I haven't been blogging much after a long vacation and return. I care.
ReplyDeleteHi there,
ReplyDeleteJust following a post from somewhere else - glad to hear you're feeling better and trying to get a solid diagnosis!
If you haven't already, please ask your doctor to test for celiac disease, and don't take no for an answer. Also make sure you get the best blood tests, not just the older IgA anti-gliadin test - you need at least the anti-TTg test.
The reason I ask, is this sounds like classic undiagnosis celiac disease - "I hate having pain every day of my life. I hate fatigue. I hate canker sores on my tongue that hurt SO badly! I hate migraines. I hate not feeling well enough to go out and do things".
One of the most common syptoms of celiac disease is unrelenting fatigue, even without stomach problems. Canker sores also is very common.
I am speaking from personal experience - I also had terrible fatigue, horrendous stomach problems, started getting joint pain etc etc. Had tests done for celiac disease which came back negative, and decided to try going *strictly* gluten free anyway just to try get relief. Within a few weeks symptoms were much better. Challenges with gluten left me sick as a dog. I'm left in an "undiagnosed" situation where I don't have celiac disease, but am convinced gluten is very bad for me.
Check out http://www.celiac.com/gluten-free for a very supportive group. It's worth a try, if it doesn't work then at least you've ruled that out, but get tested first before going on the diet. Some people on that forum had fibro, were in wheelchairs, were giving up after 10+ years of doctors telling them it's in their heads...
Glad you are feeling better. It truly sucks, but thank goodness for the internet. We can reach out to each other in tough times.
ReplyDeleteI'm glad things are a little better for you. I've been hoping for a treatment that works since 1996. Maybe someday... there are times of remission though and I take advantage of every good day that comes my way. I'm also not afraid to take a pain pill when I need it...ciao
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