Hey all, hope all is well with each and every one of you. Been awhile since I've posted anything, but wanted to update you. I have been in a RA study with a new experimental drug which seems to work on every one in the study...but me. I have no insurance anymore and am on VA insurance which is better than nothing. Been trying to get into see a RA doctor, but still waiting and when I do have to drive to Nashville TN. The MTX I am on hasn't done anything either. My feet are stilled swelled and hurt like crap every day. My aunt gets me some celebrex which helps my fingers, but not my feet. I am beginning to wonder if it is RA at all. I was diagnosed by my general practioner with an RA factor of 65, which after seeing some RA Factors on here is extremely low. The RA doctor I did see never ran any test except a blood test and felt my ankles and other joints that was about it. But no medicine I am on seems to work, it is going on two years and my feet or my left foot to be exact is still swelled the size of a baseball by the end of the day. It hurts on top of the foot and sides more than anything and now the heel. Anyway thats about it. Hiya, Phil! I'm sorry to hear you are having such a rough time. I hope you're able to see a great RD and get on a drug that brings you some relief. Congratulations on the pending nuptials!! You've got a great gal that loves you in sickness and in health.
Hi Phil, Congrats on your upcoming wedding! Did you ever try antibiotics? Check out www.roadback.org. That should be covered by the VA. Hugs, Pip congrats on you engagement!! I hope you find a job soon, I know how much that means. Good luck with things!
btw, I am getting married, never thought I would again and probably have no right to seeing as I have a hard time getting around and cannot find a job, seems no one wants to hire me once I come limping in and tell them I have RA lol.
Phil
Hello Phil, I hope they find some meds that work for you soon! Congratulations on the upcoming wedding!
Welcome back Phil...and congrats...when's the wedding?Oh, Phil. Sorry you are having a tough time but honestly I think it is quite 'normal', for want of a better phrase, to be where you are at. This is common. You aren't unusual at all here.
I am two and a half years since dx too and nothing has worked for me yet either.
Trying to keep up the hope get's real difficult at this point...we start to feel nothing is going to work and we will never find our way through this but we will. For myself I just have to keep believing, lean on my friend's here for emotional support...as their hope can carry me though when I can't see mine. I have to keep finding the 'light' each day and in every way I can, I have to change my expectations about how I am valued...maybe before I valued myself because of a job I did but now I can't do that so I have to find another way to value me.
I can hear you beating yourself up from here, dearest man. You need to stop it will only make everything worse.
No you can't move easily at the moment and you can't get a job at the moment but maybe getting married is exactly what you both need here. Maybe it will be the light to get you through until something works...and don't you dare decide for her what is best, let her do that. You have every right to get married dearie, enjoy it, if it's a good bit of your life, let her support you if she wants too.
You are being awfully hard on yourself for something that you are not to blame for. You are grieving your losses and that's good but let go of the paddle please you keep hitting yourself in the head with. Owch!
The drug just has an experimental name X500 or something like that, I am going through Biomedical Research, hec I get paid for it:) It was administered by IV, others on it have reported great results, unfortunately I haven't. Either I got a placebo or it just doesn't work on me. The only doctor I can see is a VA doctor, which I am very leary of but have no choice.
Wedding date is set for 8 April 2008, that was the day my Mom and Dad were married. My mom is still living, so it was something for both of them, even though its on a Tuesday!
Phil
Phil, you are a person, not just an income or a laborer. You have every right to be getting married, and your partner sounds like a lucky person to have a thoughtful, caring person like you. Marriage is hard work and with chronic illness it's harder, but definitely worth it! Best wishes on the wedding, and I hope they find something soon to help you feel better.
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