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MsCowgirl 
1:31pm, October 25, 2009
The heartlifting moment of my day was seeing a little girl, about 6yrs old, pushing her toy pram along the path in the sunshine. She looked so at ease and happy and so did her little dog, who sat content in the pram enjoying the ride equally as much. So cute.
Those cheerful thoughts are the ones that are distracting me from the more sinister ones that I have to deal with next week. It's going to be a week for "life-changing" decisions to be made. I see both my GP and Rheumy within a fews days of each other. First up I need to bring them up to speed on the flare-ups I've had since last seeing them. The last two flares have been the worst to date. I seem to have this monthly cycle of flaring, but as times goes on the quiet times inbetween are getting worse.
I need to talk with them about my enchroaching lack of physical capacity. Not just the fatigue-attacks but the overall deterioration in my general ability to move adequately. My neck causes me to lose mobility of my head and not be able to turn and look over my shoulder any longer. My feet/ankles are comprimising my ability to walk properly. My hips and SIJ's mean sitting and standing becomes too painful. My wrists and hands hurt regularly but so far (apart from my thumbs) I can still use them.
I need to talk with them about my pending resignation from my job. I've exhausted all the leave I had available to me and finally there are no more options left but to leave on medical grounds. I still struggle to grasp that after 30yrs service, I am leaving in this way. I feel I've let myself down and this disappoints me no end.
I need to talk with them about where my future is heading. The Humira that I was so hopeful would do the trick, has not so far. In fact I think I am genuinely worse. I know there are other meds out there, but I cant help but feel its all going to come just a bit too late.
I'm having visions of myself being on a disability pension. We've always been so independant and responsible for ourselves. It's a hard pill to swallow to think I'll be a burden to the taxpayers of this country. I want to be self-supporting but can't see the wood for the trees right now as to what sort of functional job I can do.
I need to talk with them about insurance and permanet disabilty status, about ongoing therapy and treatments, about my drivers license health status disclosure, about travelling and I've a host of general questions that I'm sure I will not get time to ask because these major topics are going to take precendence.
I hope I look back at this journal entry in a years time, in a better state of health than I currently am, making use of my time in a purposeful and meaningful way and stabilised on some medication that will give me a repreve, even if its a short one. So crunch-time has come, please wish me luck as I go forward grasping to the remnants of the "old me" and gaining understanding of the "new me".
Comments
Pain and uncertainty make everything looks so much more hopeless. Cheer up, darlin. Brighter days will be ahead. When your pain wanes and some of your questions are answered, you'll have a happy day.
I'm not making light of your feelings, I know exactly where you are. But, there really will be better days. Kiss a baby and sit out in the sun. Things'll turn around a bit.
RissaJoy
there will be good days ans bad days ahead.For your licence you have to send in a list of medication your on, i had to for my licence.
Disabity payments are little hard to get on, you have to show you will like for at at least the past 2 years and 2 years to come, good luck.
bundymum
Aw, heck girl. Seems to be all coming at you at once. Been there...and will probably be there again. But, you gotta do what you gotta do. And I know you will, with style and grace. Not to mention some out-and-out temper tantrums from time to time!
My heart is with you.
Tessie2
I feel your pain my dear. I have been going down the same path for 2 years now. Yes, it was very difficult to give up my career and agree to sit down in this chair. What I have found since then is that I have more quality of life. It has taken a long time for me to say that, but now I can, some days. Remember that you will NOT be a burden to taxpayers if you need to go on disability because you have paid into the system every day that you have worked. You are claiming what you have paid in!!!! I hope that I have not offended or hurt you in any way with this. Sometimes what I want to say does not come out just right.
take care of you and know that you have many friends on here.
Jamie
jdfwood
I can certainly understand how you feel. One day everything is ok the next day everything is all wrong. Of course I am a lot older than you but none the less it comes as a shock when what you have been used to doing and enjoying just stops! I never ever dreamed OA would take over my life, but it has. I have to force myself to get things done now, but thank God so far I am able to do so even though it hurts terribly. I have found so many understanding friends here on DS. Believe me most of us understand and are willing to care and listen.
Joey
Joey1234
So sad that you are not doing well. I know how you feel regarding the possibility of having to stop working - I recently had to do that myself. Hang in there. Hopefully, you will be able to get all your questions resolved. Even more I hope you find the right combo of meds to help you feel better. Take care of yourself.
Warm gentle hugs are being sent your way!
NJCAT13
I really hate seeing what this darn disease does to such wonderful people. It picks the strongest, most incredible people and tries to reduce them to something other than what they know they are. I wish I could say "I understand," but I do not. No doubt, however, one day I will. You are a mentor to people like me - one day I will recall this entry.
Please try NOT to see your situation as a "burden" to your tax structure. Remember how many decades you have paid INTO the system, in case just such a situation comes to you. It could have been anyone, but it came to you. You have worked hard and long to pay into something that, thank God, you can benefit from now that you really need it. And that is key - you don't 'want it', you 'need it.' Period.
What makes you my hero is how somehow this rotten disease has not taken your mind, spirit, or humor. My Gram was the same way. I never understood how someone so twisted up and stiff, and could never sleep an entire night, could be so funny every single day, keep such a keen, sharp mind, and just radiate such spirit all the same. My progression is nowhere close to hers or yours, and I whine and bitch and feel sorry for myself. I seriously look up to you.
At the end of the day, please try to see this life change as just that. Change is the one thing we can count on, isn't it? Know that you have every right to give your body a break, and let it heal again, to have *quality* of life for again, pamper yourself. My God, you've more than earned it.
Huge, huge, huge, hugs!!!!!!!!
Bistro
I am so sorry to hear that you are facing all of this. If you need somebody to listen remember that I am here for support.
vchen