I went MIA awhile back because my condition went spiraling out of control and I was afraid of turning the group into a pity party for myself or a competiton of who has more problems which I have seen occur. I didnt want to be the barer of shall we say "the things that are to come" because while my situation has turned into a drastic mine field of agony it does not mean others will and I would never want to instill fear or panic in others. But right now i really need the group, i need friends i can lean on. So here goes ... I have tried an army of meds starting with Sulfasalazine and moving onto bigger and better (HA!HA!HA! we went through in fact nearly every antirheumatic from MTX, all the way up to Humira and Enbrel. Nothing was getting better I in fact proceeded on a downward spiral which has lead to a now closed door on all medications aside from prednisolon and my handy dandy time release tramadol and the big M yes morphine. The woman who went 2 years with no pain meds so she could safely carry her baby then nurse the first year and who never wanted to be on any major pain meds because she doesnt like to feel spacey now survives on pain therapy and pain meds. I am not a happy Meli when it comes to my disease. I have lost my hair ..3 feet of hair gone! I have deformed hands that when i look at them they do not look like my own and it actually startles me regularly the same goes for my feet. I have cool new canes with special handles one for each hand for the days i can stand up and walk and i have an electric wheelchair which goes 7km an hour for the days I cant. But all in all i am happy i am content i have a family who loves me children (5 of them) who adore me and a husband who has changed his entire life to help make mine more comfortable including making sure i always have an extra spoon (google: The Spoon Theory to understand that reference). I wish i could be the one on here posting i tried this new drug and i got my life back i wish i could be the one leading others into the path of wellness but i cant. I am the rare exception to the rule the one whos body tolerates near to no medications and responds to no form of therapy I wish i could be the happy perky one saying it will be alright or they are making such great advances in medicine but instead i am the one who gets to say sometimes it is not alright and it may never get any better. I will end up in my wheelchair full time within the next 2 years at this rate and i am actually no longer scared of that. I have found a certain peace in knowing the guinea pig phase for me is over there is no medication left to try and fail there is simply pain therapy pain meds and simplifying my lifestyle according to my struggles at the time. Peace has come with failure is an odd way to think but it has I am now more content to go on living than ever before.
Meli I really don't know what to say. I am glad you have a family to give you love and support. They are certainly beautiful. You can lean on me.
Meli, I’m so glad you’re back, but I’m also so sad to hear that your condition has worstened. Your positive attitude should be an inspiration to the rest of us to carry on as we do our best to live with this affliction. You’re in my thoughts.
Seenie
Hello Meli,
So sorry to hear of your pain, disability and downward journey, thank you for sharing that you can reach a peace with your condition. Its probably something we all fear…not being able to cope with the worst case senario. Sometimes we need to be reminded to be thankful for the mobility, function we do have and the joints that don’t hurt. For the family who love us and give us support, the medications we hate to take, but keep us going.
X
Mamameli, I have always been inspired by your posts. This one is very sad, but strangely still uplifting in that you seem to have reached a certain level of acceptance. Not that you're giving up but rather saving your energy & spoons for what's important to you.
As ? someone else said on here quite a while back(can't remember who but it has stayed with me) that gracious acquiencense
I hope you never feel you can't find a source of support & comfort here NO MATTER what you have to say- you have always been supportive to others on this page. Thats my 2cents worth.
and, who knows what's around the corner for us....