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I need some help


danelle
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:( Hi all, I just spoke with my GP, let me just give you a little run down of what is going on:

1. I have now tried corgard, cardizem, lopressor, sectral, zoloft, wellbutrin, florinef, midodrine, clonidine, mestinon without success-only side effects. I have been taking atenolol(BB) and clonazepam for yrs but they only help somewhat.

2. I had to quite my wonderful job back in June because I was unable to function-I fought it so hard and should have quit sooner.

3. I have had POTS for atleast 19 yrs now but only dx last Nov., it has progressively gotten worse to a point of not being able to do ANYTHING, just walk to the bathroom, couch, at that's about the sum of it. My husband is so afraid I am headed towards a wheelchair and my thoughts aren't far behind him although I would never tell him that.

4. I am a fighter. I don't give up and the last thing I want is for my body to make me do so but it has

5. I struggled thru nursing school being a mother of 2, wife and working full-time, I loved my job and made wonderful money and it made me feel great feelings.

6. My GP, who I have now seen 3 times, has tried me on 3 of these meds by the advice of dr grubb told me that if they didn't work that he would declare me disabled. When the meds failed, he changed his mind. He says I need to go back to dr grubb and see what he wants to do or what he thinks. I have called grubb's office and they tell me to go back to the GP.

7. I have had no income since june and luckily I filed for my disability at that time but they are waiting for info from my GP-I explained to the GP that they only needed the dictated notes of my visits-not a recommendation and he still doesn't want to send them. He says that this is treatable and that I don't need disability but he has no suggestions on what else to try. meanwhile my family is suffering, i am suffering physically-POTS, CFS, fibromyalgia, etc.

8, I can't help but think that people think that I am trying to live off the government. That is the last thing I want. Goodness, I would only get 800/month and I could make that in 4 days of work a month IFFFFFFFFF i were able to work.

9. AM I fighting a losing battle because no MD will help or "agree" that I am disabled(and I can't stress enough how incompacitated I am)

What oh what do I do?? SOmeone please give me some responses, I am crying my eyes out. I am a good person and only want to make ends meet, the LAST thing I want is to feel this way and be a TOTAL prisoner to my body and all it's ailments. :(:angry::(:( :

thanks

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I think you need to be blunt with your doctor and tell him/her that Dr. Grubb feels he's already given you the recommendations and now it's his/her job to follow up. Ask if he/she can/cannot do that. If the answer is no, then move on to another doctor.

Also, try to be as calm but firm as you can be while discussing how disabled you are, how upsetting it's been to you to have to give up your job, but also how frustrated you are at being bounced by him/her back to Dr. Grubb when he/she already told you that there would be an approval for disability.

Nina

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Oh, and whether or not he wants to send your notes, he HAS TO SEND THEM if you put your request in writing.

Nina

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Hi Danelle,

I don't think I can do anything to help you, just let you now I'm very sorry you're having such a hard time. Try to be strong I think you can manage because you're a fighter. I can imagine you don't want to think you might be using a wheelchair, I didn't want to either and I felt very ashamed and a complete failure. Nowadays my wheelchair is one of my best friends: it takes me everywhere I want and I'm proud of myself sitting in it. I know you can do that too when it comes to this. Wish you all the best

Corina

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Thanks everyone :( This thing is draining to say the least.

Corina-I admire your strength

Ernie-wish I could afford to go see Dr Grubb again and be able to physically go as well(it's 11+hrs for me)

Morgan-your response made me laugh, don't know how many are left around this joint :(

MM-My sister says the same thing, just be assertive-which I typically am-i'm not quite sure where that aspect of me has gone :angry: I did call the GP's office back and they are supposed to fax me a copy of my records tomorrow-we'll see. Could he put lots of opinionated stuff in there or just the dictations?

We have done all that Dr Grubb suggested as the course of treatment for me so I don't know what he expects Dr Grubb to do either, I just can't figure this out.

If there where a miracle drug, we would all be better :( You know, it took me a long time to get the courage just to take the meds but I did. Oh well, it will all work out -I have faith. Just having a bad day I guess.

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You might see if Dr. Grubb would write a report or letter for you. It could cost you some money but since he is an expert in this area and he has already seen you, I think his opinion would be extremely valuable in this effort.

For some reason some doctors are afraid of the whole disability issue and refuse to support their patients no matter how unjust it is. They don't seem to consider what the additional stress they create does to the patient. They are forgetting the "First, do no harm." of the Hippocratic oath and I wish there was a way we could call this to the attention of medical doctors as a whole.

Sometimes it is a matter of being uninformed. My friend's primary doctor wouldn't write a disability letter for her because he said he didn't know how. Now she and another CFS patient prepare a draft for him when they need this documentation.

I would seriously consider another doctor also. You don't need a doctor who is making you sicker by creating the burden of additional stress.

I, too, thought I was headed for a wheelchair and have just started trying to walk a little outdoors. I lived in my bed and on my couch for years also so please don't give up hope. And don't forget, the stress is working against you right now also.

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Okay, actually, if we want to get "legal" about it, your doctor has a "duty of care" which is mandated by licensure in your state and by their degree via ethical standard. The duty of care covers what is legally a basic standard of care. That standard, legally speaking, is what another reasonable person would do given the situation. If you have a known disorder, and have a test that is abnormal is it HIGHLY REASONABLE to expect treatment, especially if the test is within her area of expertise.

All that being said, it seems she is highly uninterested in being a partner in your care. You're best interest would likely be served by a different doctor.

If you'd like to make yourself feel a bit more empowered, you may want to file a written complaint with your state's medical ethics comittee, and cc the licensure board.

Nina

Edited by MightyMouse
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Oh, and you can add the American Medical Association to the cc list too. Be sure to send each thing requiring a signature. It costs a few cents, but is worth it to have proof your letter got there.

Nina

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You're welcome Danelle... or maybe I should be saying "sorry for being kind of grumpy" :( I had too much caffeine today :angry:

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As a mother of three with CFIDS, POTS an amazing career that I have had to leave for short term disability on multiple occasions I resonate with your frustrations both in terms of your worries for your own recovery, the impact this has on your family and the **** you are going through with our medical system.

Here are my virtual hugs....

First you are a pioneer blazing a trail that is new and uncharted. Everyone you contact learns from you, the expert. Your family learns strength, resolve and grace -- traits they won't find on MTV. Your doctors learn to face the harsh truth that they do not have all of the answers -- this is no doubt too difficult for some to face nevertheless you have planted the seeds and in some cases will need to move on. Keep in mind that life and this illness is not linear -- nothing that happens means that it will be forever. POTS is a chronic illness, but not in all cases is it progressive. Some of us go through long cycles of ups and downs. My last one was 6 months before I started to see the light at the end of the tunnel.

For me, I have always been fortunate to have (and pay for) a circle of alternative health provides. This has been essential for me during the dark times when the medical "experts" seemed to throw up their hands. I always had a team of people who believed in me and believed I would recover. Sometimes it was a chiropractor, an accupuncturist, a massage therapist or a pranic healer (like chi gong). Each had their own path, but each shared a vision that I would improve. And each time I did.

Hold onto hope and I will hold a good thought for you.

EM

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Danelle, If it makes you feel any better (and I hope it does), I just got my disability and NO doctor was willing to write anything about me at all. My neurologist would NOT fill in the functional capacity form my lawyer suggested. I went through the most unimaginable torment for a year, stress beyond belief, you know what I mean, laying there at night wondering what would happen. I had even called the lawyer a few times to quit pursuing SSDI since I figured it was hopeless. My husband was discouraging me by saying I would never get it. It was a really stressful year for me. But, I did get the SSDI. I was so convinced that I wouldn't, that I still am trying to believe it. My doctors never contributed anything above and beyond their notes on my case (unless there was some phone calling that I do not know about between SS and my doctor). I finally kept my sanity by reminding myself that I was willing to stand in front of a judge if I had to, and look him in the eye and tell him MYSELF that I was unable to work, and that even if he didn't believe me, I wanted to have the opportunity so he would become more aware of people like us. I also had a work history, and I displayed my inability to continue by going down to three days a week. That probably helped. Also, I had notes from my pastor and my mother about how little I was able to do.

I really empathize with what you are going through. It's not easy.

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