Learning to accept

When I was diagnosed with sarcoidosis in 2007 it was life changing. My lungs were bad and I couldn't function. I didn't think I would get through that in one piece but I did. I had the odd issue over the years but nothing hubby and I couldn't handle. About 3 years ago I saw my doctor about my aching legs. He told me to loose weight and take some panadol. Like that worked NOT!!!

I gained weight from the prednisone I was given to save my lungs in 2007 and haven't been able to loose that weight. I have tried so many things to get the weight off but it loves me too much to leave lol. In sept 2010 I developed scalp psoriasis and from there things have gone down hill. I suffered with leg oedema, bakers cyst in my left knee and have had intracranial benign hypertension too. Last year in Oct 2011 I was diagnosed with psa. Since then it has spread to both knees, right ankle, wrists, ribs, back and hips.

A few days ago we brought a wheelchair for me to use on my bad days. It wasn't an easy decision to make but some days I am in so much pain that I struggle to walk for long and can't stand up for long either. I don't want to miss out on my kids growing up. We are travelling around Australia in our motorhome and there are so many things I want to see and do. I haven't used the chair yet and it will only be on really bad days. I am stubborn and will fight this with everything I have but some times I need to rest so I can fight another day. I have been fighting since 2007, so its only far that I have a chair to use so I can rest every now and then.

I am a member of inspire and I have often felt alone, many of them criticised me for wanting to have a wheelchair as a back up. I am so glad to have found this site and to know that there are others just like me and that its ok to use mobility aids when I need too. Its hard to accept these limitations at 32 but I am alive and breathing and for now I am happy to take it one day at a time.

My hubby is wonderful and supportive and his love keeps me strong. He has his own health issues to deal with but we understand each others pain. Our 4 daughters bring us so much joy, love and hope. The greatest thing we have and will ever accomplish in life is our kids. We won't give up or give in without a fight.

That's awesome!!! You SHOULD have that wheelchair because it affords you more time with your family as far as I see it. I too am 32. My fiance has sarcoidosis. I often use a cane when needed. I just bought the leopard print one... it makes people laugh and sometimes if I have to use it for a few days I will put some light-up stuff on it to make it even more "fun". It's hard to look young and healthy on the outside and feel like this on the inside. Others do NOT understand. Especially being robbed at such a young age. But you just keep your chin high and worry not about a single thing anyone else says. Your husband understands and your children love you. True friends will try their best too and that's all you really need. We understand. We know. You use whatever is out there that makes you feel ok, if not good. This disease isn't going to stop you... just slow ya down a bit; and you know whaqt we all need a little slowing down every once in a while anyways :)

Continued happiness and blessings to you!!

Thanks Katibird, it great to know that some people understand how hard it can be. I have since used my wheelchair once and it was hard to give up the control and be pushed around. I struggled with not being able to direct where I was headed and having to rely on my hubby and kids to move me around. It was strange and I think its going to be hard to get used to it.

I should crochet something fun to put on the chair, maybe make it more homey I guess. My best friend doesn't understand but she tries too and that means everything to me. I haven't been started on methotrexate yet or anything other than pain killers and mobic, so I am hoping that when I start on the methotrexate soon I will be able to move a little easier. I wish you and your partner all the health and happiness in the world.