First, I got a call from the Governor's office. They are filing a formal complaint on the behalf of my daughter. This is a big yeah.
I also got a call from the Arizona Lawyers for Disability. I don't know what they are going to be able to do for me. But I'll put this on the yeah side too.
Got the call from the people who are going to modify my bathroom, etc. Another yeah!
Binder & Binder called to start the appeal process. Had to quit in the middle because of doctor's appointments. We'll give this a yeah, too!
Then there's the doctors and the yeahs turn to frowns.
Rheumy called and said that if the Primary can't get the sinus infection under control then I might have to have the sinuses drained and see a Ear/Nose/Throat specialist. In that case, I might also have to have a biopsy done to see if it is actually Wegener's which they suspected I might have a few years ago. That's what the projectile bleeding and bleeding of the eyes was all about. It's deadly without treatment and I am running out of treatment options.
Went to see the Neurologist and he was very firm about my prognosis. Yes, the tremors are caused from the RA. Yes, I could possibly also have MS. But he could do the Brain MRI and lumbar and we would still be at the same place because I am already on all the meds that he would give me at the end of all that. The tremors are here to stay. So, I guess is the wheelchair. My only hope seems to be that the PT will keep me functional. I am so upset about this that I don't even know how to react.
He doesn't understand himself why I didn't get SS. He encouraged me to push my Rheumy to write up something. He obviously does not think I can work. He told me a was a really intelligent woman and he wanted to play it straight with me. He upped the one med, Bacolfen. I can always go with more tests later if I want. Right now so much is happening, I think I wait this out a bit.
I just wish someone had been honest with me in the beginning what this disease could do to somebody. However, aplastic anemia (oh, I'm getting the referral to the Hematologist, another win I guess) is extremely rare. All these complications I have are considered rare disorders.
So when you read this, don't think this is going to happen to you. I just got the blessing is all.
I'm sure I will start to feel brighter when I get over this sinus infection. These meds cloak when you have them and I wouldn't have even have realized it if they hadn't done the bone scan yesterday. So that is fortunate.
I will try to catch up on everyone else's news when I'm feeling a bit better.
Love you all.
Deanna
I am sorry that things are such as they are in your life. Know that you are never alone...we all care about you here. Take ccare and GOD BLESS
Deanna,
I wish I had something wise to say to you...
please know you are in my thoughts. everyday I come on this board to check on you and see how you are. I'm sorry you are having such a hard time.
Lori
deanna- glad to hear that some things are going for the good, i saw a binder and binder commercial the other day and i thought of you but i wasnt sure if it was an IL thing or if it was for nationwide people. but i thought of you nonethelessDeanna, there are so many "yeahs!" in that post....I know it doesn't seem that way...but look at it again. I mean..YAY. I'm actually happy for you. I know you're going to come out on top, you are way too big for all of this. Does RA REALLY think it can stop the allmighty Deanna????They already installed the shower seat, bar and I have one of those hand-held, massaging shower heads. I can't wait to try this out. My daughter is going to love it too because with her back, baths have become a big problem for her. I can't believe it was done so quickly.
This agency and one other are the only ones that have helped me. And, they did it with dignity, respect and kindness. So, I know it's possible to be that way.
Thanks for all the replies. Katie, I fear RA might eat me alive. I'm not so tough, but am glad you think I am.
Joonie, are you screaming my name?
I do feel more postive today though.
I'm glad things are looking up for you Deanna. My hubby is remodeling our bathroom and I can't wait to be able to get there!!! I have a new tub and we are bringing our washer & dryer up from the basement so I won't have to trudge down to the dungeon to do laundry! Now I won't have any excuses for not doing the laundry. LOL
You made me realize that with our new tub that I probably need him to add some bars for gripping and stability so I don't slip or something. You are a very wise woman and I appreciate all your wisdom to this post. Keep it up!
C
Deanna I am glad to hear that something is finally happening for the good. I keep forgetting to tell you to check around your area. there may be a group who builds ramps for houses for free. I work with such a program here and every year they get businesses together to get the supplies and get their employees to volunteer time to build these ramps. We usually do 1 o 2 days a year where we do a massive ramp building for about 25 homes or more. This group does it year round too. I am so happy to hear they did the bathroom for you. I hope the news keeps getting better. meme
I am seeing someone on Friday about getting ramps. They have a program where if you participate in their activities for the disabled, it counts as towards the payment of the ramps. I will get a chance to get out and do something besides see doctors. I'm really excited about that one.
I do wonder if getting all these things lined up and then they do the knee surgery whether I will need all of these things. But definitely, until the surgery and recovering afterwards, I need these things in place. Besides the nerve problems are still there.
I am supposed to be getting the electric powered chair as well. Don't know when. They seemed to have set my paperwork aside until I called them yesterday. That happens a lot.
And, I did find a pain specialist that is willing to try other things besides opiates. That's only a couple of weeks away. So maybe they can do some thing to help with my pain. The spine pain is the worst. Can't believe I am actually starting to think that shots in the spine might be a good thing.
Deanna the spine inj were very helpful for my hubby and my co-worker. Actually fixed the problem for one of them.I am hopeful regarding the spine injections. I can tell it is inflammation. My daughter had it done before and got several years of relief.
This is the same doctor's office and they do it in hospital type environment, looking at under a MRI. That gives me a lot of confidence. Also, they are having me see a different doctor that specializes in patients with multiple problems.
So, if they do that and do the surgeries, in a few months my pain levels might be an entirely different story.
I am glad to see that some things are moving forward!!! Big YEAH!!
Did the neurologist say how the ra causes the shaking? I am still trying to decide about seeing the neurologist. Like you were tole, you can go through all the tests but the treatments is still the same as what you are doing!
I have this problem with doctors. They can tell I've already read up on everything so they give me the short hand version. So, I'll pass on what I've learned in my reading. Inflammation in RA, Sjogren's and Vascultis can cause compression on your nerves. Over time, this can cause nerve damage. In Sjogren's, it actually can dry out the nerve tissues. For instance, inflammation along your spine can give you a multitude of symptoms. Then you can get the peripheral neuropathy which can cause the tingling and pain in your hands and feet.
The one good thing about nerves is that they can heal themselves. It takes time. Part of that is PT and part of that can be medications. That's why I definitely would pursue seeing the Neurologist.
You also may get one that has better info than what you find elsewhere. I think it is worth the trip. You've had some encouraging news lately. I think this might help you even more. The main thing is that you want to keep damage occurring. Seeing one now is how you do that.
Thanks for pushing me Deanna. I just called and left a message asking the rheumy to please call me to discuss seeing the neurologist. They said it may be a couple days before she calls back, jeesch. I guess I will give her until Monday and start looking for a neuro on my own!
I guess I am questioning if I even have RA because she wasn't real sure about that to begin with and my symptoms haven't really changed much. Like everyone I suppose, I am just tired of dealing with doctors and questions and drugs and not feeling any better!
Deanna, It sounds like your neurologist is a really good one. Since I have been offline, you have gotten so much accomplished
I have been so bummed. I am a terrible driver and I always was a good driver. These drugs mess up my spatial abilities. I have to drive Brett to get a colonoscopy on Friday and pick Colton up from school most days. I feel like one of those little old ladies, with my nose to the windshield that NOBODY wants to get behind. I just hate driving on drugs. I try to time it that it is right before my next pill so I am in pain instead of high. NOw pain just gives me road rage
My fingers are getting sore and I have so many posts to read but it is great to hear all the "yeahs" !!!! You are such a go getter. You know what you are doing won't just help you - it will help us all. WE ARE SO LUCKY TO HAVE YOU and I am so proud to call you my friend. I wish you were closer. The other day my niece came over to keep my company and we were playing cribbage - I could not add the cards - I would love a friend to help me add 9 + 6
The firm prognosis. Whew. You've been looking for some firm information, to be past all the shifting sands and futzing around. This just wasn't the firm ground you were looking for. The tremors, the chair, the lack of options for making that better--that's a lot to take in.
And the Wegeners. We'll all try to chant that one away for you.
You did indeed come up on the 'rare' side of the dice. So many rare complications in one person--of course you feel like RA is eating away at you.
Thank goodness you're also a most rare person.
That isn't pablum.
It doesn't fit in any accounting structure against the rare aspects of the disesase.
But you are a rare one, and it's better world for it.
I'm not given to Hallmark moments, so you have to know I mean that.
Roxy and Meme, so glad you're back with us. Really have missed you both. Roxy, I would not through my body down and just let something run over me. However, I might, just might be tempted to pull you out of it's path.
Meme, so glad that your absence has been for practical matters and not because you haven't been feeling well.
RKGAL, your words mean so much to me. I spent about 2 hours today with the disabilty lawyer. There was 2 hours yesterday and we still have not covered half my doctors. I keep asking if it wouldn't be simpler to just mail them all of this. No, they do everything my phone. Oh, well, if they want to be difficult...
The hard thing today has been fighting with the AZ General Assistance. I had called on my favorite Disability Advocate for help. He's great, a real go-getter. He's my local hero. Anyway, he got them on the phone and just went up the supervisors. Oh, this one lady was a real winner. She basically said that how dare we waste her time with this case. I've only been waiting since September, have made countless phone calls, most of which were not returned. He asked for the next supervisor. We are on a three-way conference call. Now they are arguing amongst themselves about whether my mobile home is an asset. They don't even know their own rules.
I just got through that hurdle and then it bounced up that I had got my denial from SS. I just got that. So, I have to do the appeal before I can get the General Assistance now. I am supposed to have my disability lawyer help me do that letter and am allowed 60 days for that. But I cannot get any help from time because they delayed this out until I got a denial from SS.
This is horrendous. They also expect me use the lot rent that my daughter has been paying me as a loan which supposedly I pay back when I get SS. Oh, but the loophole here is that I'm supposed to be paying my daughter back a month now. This is to get 2 a month -vs- 8.
I'm so exhausted. If they had done this in a timely manner, I should have gotten it back in Sept-Oct timeframe. Now, SS has had time to deny and they can delay it further. They only give me 10 days to respond to any of their inquiries, but they have no time limit on their end.
Deanna,
Yesterday I spent a couple of hours on the phone with some nonsense between my insurance company and a place where I had some tests done over a year ago. A ridiculous matter of about and I've spent about 6 hours on the phone so far.
The whole time I was dealing with the silliness yesterday I was thinking of you. What a huge amount of energy, sanity, and fortitude things like this take from you, and you're dealing with it on such a grand scale that I strain to truly imagine it.
I'm so glad you have a good disability advocate who can help out with some of it. But oh, how utterly exhausted you must be.
Unbelievable that they don't even know if your mobile home is considered an asset or not.
Remember the Fickle Finger of Fate awards? Don't you wish there were some sort of Big Dumb Demerit awards that could be handed out for the really outrageous stuff that comes out of the system?
Deanna,
I'm so glad to hear of all the good things that are happening for you and MAD about all the crap you still are going through.
You really are an inspiration and I am so grateful for all the wisdom and compassion you bring to these boards.
Your day will come!!! I just know it.