Depressed

[cheepchicks]

I wish I could think of pretty words to offer you comfort. I can not...instead I will just say a prayer for you.

Kim

 

[joanm]

 

[Betsy]

So sorry to hear about your diagnosis. Have you thought about trying diet and/or supplements to help your condition? Diet change has helped many sick people feel better and maybe it can help you.

 

[SpottedCrow]

Prayers and hugs.
My mom had SLE, so I know how much fun autoimmune diseases can be.
A wheelchair isn't a death sentence, so don't look at it that way...They can do nerve blocks that just deaden the pain receptors so that they're not going off every second...

 

[Alleyoops25]

Sara your problem is by far worse than mine.You have got a tough fight on your hands girl. And Lord knows you are stronger than myself.
Dragonlily since your dad has it you are high risk for getting it as well You need to have Blood drawn, and if they find a gentic marker HLA-B27 then you have it in your genes. However it does not mean that you actually have the disease in progress they will have to do a bunch of different xrays on you to tell for sure. And I think it was your dad that you were wondering if he had it longer than he had been diagnosed. He probably has the onset of the disease usually starts in when your in your 20s.
Luckymom a DO is a Doctor of Ostoepath. THey mainly work on people joints, and do alot of chiropratic type stuff. Never will I go to see another one. From all that I dealt with mine and stories I have heard from other people they just want you to keep coming in and popping on you rather than finding a salution.
Betsy I know and have started a starch free diet , I read that starches make syptoms a lot worse. And I am always taking supplements because I have been breast feeding, which is something I may have to give up so I can start drug treatments. I apperciate all of your guys support. And I really hope that I dont get as bad off as my dad. However I know that eventually I will end up with a lot of fused bones. Anyway I got to get my kids in bed. Talk to you later

 

[erinm]

Arm yourself with knowledge alleyoops. That is how you will get through and plenty of support from your family.. Keep active.
Try not to let yourself get too down in the dumps otherwise it will consume you.
I have a spine tht has let me down since my 20's{ arthritis, disc disease.} and have had fusions twice and you have to push forward to keep yourself well. Thankfully i am fine for now. { who knows what will happen when I am 80 LOL.}You have every right to feel bad but you still have to push forward! Good luck! and knowledge knowledge knowledge! You will prevail! ErinM

 

[Alleyoops25]

erinm. you sound like my husband, he has had three back surgeries and is getting ready for a fourth. he also has degenrative disc disease. And I know how pain full it is by caring for him.
I have been doinga lot of studying up on this and I have been doing it long before I was diagnosed. My mom and I got together when I was around 19 and we put together a folder of information. Doctors had told my that this was rare and that none of us (my siblings and I) wouldnever get it. Well out of four of us, two have been diagnosed, one refuses to see a doctor, and the other is trying to get in to see my doctor. It is really hard to get a doctor who is willing to listen and test us for this. And I think there is a lot of people who really have A.S. but have been diagnosed with ruehmatoid ( i know I cant spell it) or osteoprosis.
I think for right now It has finally settled in. I am over the shock. I am still finding myself depressed over this. Like I meantion earlier I am scared to death my kids will have it to. And to think of them suffering like this when they grow up is hard to deal with. And I am going to eventually give up nursing becuase its demands a lot of physical lifting, and standing for long periods of time. I wish that I could just excerise and it help. But with what I know and seen in this disease it is very doubtful that it would help, I can do excerises that will help keep my spine some what striat. But eventually in the end my bones will be to fragile. My dad is always breaking something. And his hip joints are totally gone because of him walking.
Anyway I thank all of you again for you support and suggestions. It feels really good to know that you guys are always here and I can talk to you all at any time.

 

[erinm]

Hey alleyoops i am also a nurse! See it is awful to know things sometimes isn't it but knowledge is power so...... Erin m

 

[Alleyoops25]

Well I have had the xrays done but wont know about the results for a few days at my next Doctors appointment. To day Is another day where I just feel like crawling under a blanket and balling my head off. I couldnt sleep last night, I hurt quit a bit last night and have no improvement today. I am not looking forward to my next doctors apointment , even though I have to wait for the doctors report I got to look at some of them, as they came up on the computer. It shows I have damage in my pelvic bone, and hips. I didnt get to see the rest of them but am guessing that they will show the same. I dont understand why God does this to people, I hear all the "God works in mysterious ways." and "God will never give you more than you can handle." Yet I feel he keeps dealing me bad cards every time I turn around. People who know me ask me why I am always sick or hurt. This is a stupid question, Its like they think that it is a hobby for me to sit in a hospital or in a doctors office. But with my family I kid you not we all have been in the ER in a matter of a few weeks. The ER doc. knows us by name from the moment we walk in. I really am having a hard time coping with this, I always seen myself as going to be physically fit and hoped to be able to take care of our parents when or if they need help in their old age. Now I am scared I will be the one needing help. I know some of you think I am being a baby, and maybe I am. But I have good reason to be. Here is a picture of my dad he is 52 years old

HE was 6'3" When this started in him now even if he could stand strait he would be shorter than me and I am 5'2"
I love him more than anything, he is the most calm and understanding guy I know. And he is the one that tuaght me every thing I know now. But he has been in pain longer than I have been alive. He has been in the wheel chair sice I was 16. And It was really hard becuase kids at school thought he was my grandpa and not my dad. It was the hardest thing in the world to tell him that I had his disease.

 

[Sharona]

We may not all be familiar with the disease but trust me, no one here thinks you are being a baby. It's completely normal that you would have a hard time dealing with this - especially seeing what your father is struggling through on a daily basis. It's normal to want to cry and hide and you should allow yourself a normal grieving period. You are only human. Then continue as you are educating yourself and staying as active as possible. It's crucial you find medical team members that you are 100% comfortable with. If you don't feel they understand and sympathize move on to the next until you do. I can promise you one thing - you will find medical professionals out there that will work with you in this process. I also firmly believe there are more options than "mainstream" medicine out there - although I believe it's extremely important. Once you get on stable ground emotionally and physically check into Osteopathic medicine (not to replace mainstream medicine but as an additional tool and resource). I can tell you from personal experience it's definitely something worth checking into. Hang in there and you can vent anytime here. We will be here to listen and give you a shoulder anytime.

I have to add something else here - God doesn't do this to people. Things happen sometimes that we don't understand and can't be explained. There is no way I can prove it to you but I give you my word on everything I hold dear in my life and everything I've ever believed in above all else God is a loving God and He wouldn't do this to you - although I know it may feel like it now.