Lots Of Pain

Hey I need to vent for just a second. I had to cut my steroids back by 5mgs. Boy oh boy it's been 10 days now, and I can barely walk around in the house. Had to force myself to get out of bed and go get my blood work and turn in my 24 hr urine sample.

I've tried everything under the sun to relieve my pain in my back and joints, but I know unless I'm allowed to increase my steroids I will only continue to worsen.

My broken ribs hurt like heck and I feel them pop with EVERY step I take. I've been told it will be at least 6 to 8 weeks before they are healed and that's with me taking it easy. Of course, I can't go that long w/o pulmonary rehab, so I will go back to rehab on the 5th and hope and pray I live through it.

They last dose of wart medication did nothing and now I'm tossing around the thought of radiation on my thumbs. According to my Dr that's the only place that can be treated. The tough part will be finding a radiation oncologist that will be willing to do it. Of course, my Dr at NIH doesn't want me to do it. I'm so confused, I have SO many Dr's and each one of them has an opinion, who do I go with, any suggestions would be great.

My birthday is this week and for some reason I feel like I'm turning so old, which I know I'm not really, I'll still be under 50 . I guess maybe some of it is I miss my parents, my Mom has been gone a long time, but my Dad passed in 2011, he was my rock when the storm that surrounds my life acts up. Since he's death I feel adrift and just don't know how to stabilize things.

I'm so sick and I know it sounds childish, but I just wish one of my parents were alive, to guide me in some very hard choices. My Dr's have stopped one of the drugs I take for my lupus, some of the side effects of the drug, depression, suicidal thought or intent, anxiety, and many others. The depression and anxiety have hit me really hard, I've never had anxiety issues until now. Plus my WBC being so low, otherwise I'm hanging.

My hubby and daughter think that now that I'm not getting the drug I'll be fine. I'm just not so sure on that, I've mentioned before I feel like I'm on a sinking ship w/o a lifeboat. I really am at the end of my rope and I don't feel there's a knot at the end to hold on to. Thanks for letting me vent, I hope all of you have a good week and low pain days.

Hugs,
Barbara

Maybe you could ask your doctors to do a conference call with eachother to come up with a "comprehensive" treatment plan for you.

That way they can voice their concerns to eachother and come up with viable solutions together- narrowing down your choices to the best most *effective* and likely successful options.

Its sort of out of the box but at this point...something drastic needs to happen and you need to destress a bit somehow!

IMHO you should talk to your primary care physician about all of this and get him/her to help you sort it all out and also to act as a go between with all your doctors to help you and them come up with a solid plan of action.

So sorry for gauntlet that seems to be part of your treatment. With each dx comes another specialist,another opinion. Then mix in each fighting to provide the best care for you pertaining to their specialty and it appears chaotic at best.

I agree with Jim,you need a scorekeeper,possibly your primary? Having someone who can look at and evaluate the overall picture and help you do away with the info you don't need and compartmentalize the important things in a manner in which you won't overload the boat and sink.

It's far too much to add to the pain and making you feel as if your literally adrift with no land in sight. I read all your posts and sometimes I have to comeback it's more than I can process,your Drs,treatments,who wants you to do what when.h

You know those people who love you and care about you will always be in that boat paddling and bailing water for you and those of us here are always going to be ready with a life preserver to throw you.

Keeping healing thoughts for you and your family.

Vickie

Dear Barbara, I am so sorry you are suffering so much. It's all so overwhelming when you have so much on your plate. Try to stay in the now as much as possible. I am not sure if you are Christian, but I know for myself this is what helps me get thru the day, praying and keeping the faith. If so, perhaps you could ask your parish priest, pastor.... to visit you at home.
Just know that I am keeping you in my prayers.

Suzane

Hi Barbara,

Just wanted to let you know I'll be praying for you. I am about the same age (47) and often feel that "sinking ship" feeling and feeling so much older than I really am. It's especially hard because my children are 8, 6, 3 and 19 months and I often worry I won't be around to see them grow up or if I am around, I'll be in a wheel chair. My wife is 6 years younger than me and has longevity on both sides of her family.

I'm trying to be positive and keep on praying. That's all we can do, right? At least we have good support systems in our families. I am sure there are people out there that are doing this all alone. Not trying to minimize your struggles at all, just trying to look on the bright side (and I am a life-long, self-described cynic! ).

Thankfully we have this community to get encouragement and words of wisdom from! I am new to HealingWell but already see that it is a caring group of folks!

God bless and take care, Andy

Hi Barbara I can tell by your post that you are overwhelmed. My memory has gone blank. I do wish you the best. I will also keep you in my prayers.

love and hugs
Loretta

Barbara,
I am so sorry for what you are going through. I can certainly relate to the confusion that comes when your healthcare team is vast, and communication is not!
I was just wondering (hoping im not out of line) but if you go to WRNMMC and have a moment, stop by the chaplain offices, its near the eye clinic, perhaps it could be helpful?
Just a thought
Best wishes

Hi Barbara,

Now catching up...
Sorry to hear what's been going on.

Sending prayers and positive thoughts your way. Hope the pain eases up soon.

Take Care and keep us updated.

UA

I am really very sorry to know about the numerous problems you had got to face in the venture. But don’t lose hope miracles do happen. You can look for some well qualified professional doctors who can better deal with it. Medical technology and advanced techniques have proved to be a boon for all. No worries.

prayers for you...