A doctor is supposed to be someone you trust. You should feel comfortable in the knowledge that he or she has your best interest in mind and they care about what is happening to your body. Unless you are also a doctor, this person should have an extreme wealth of information that you have no access too. Should- that is the key word. A doctor SHOULD be someone you can count on to understand your symptoms and provide a treatment plan accordingly. When a doctor breaks that trust, it is hard to accept.
This is where I am today. Back when I was in the hospital for the complications with shingles, I saw a neurologist. Since they specialize in nerves, and the disease I had dealt with nerves, that made sense. I told my husband at the time, though, that I felt he was rushed. He didn't really listen to my concerns; he kind of just told me how it was and left.
Two weeks after I left the hospital, with a diagnosis of nerve damage due to the shingles, I followed up with the neurologist. Once again he seemed like what I had to say didn't much matter. He was confident that my nerve damage was typical and sent me away saying that it takes three to six months to recover, and it could take up to a year. If the pain was still there in December, we would talk about the possibility of this being a permanent condition.
In the hospital, the doctor prescribed Lyrica for my nerves. It is an antsiezure medication that is supposed to stop the tremors I had as well as calm the nerves from overreacting. It works. It works well, but it certainly is not the perfect medication. I still have pain in my feet and daily headaches. BUT, if it can stop my body from moving without my consent, it is worth taking.
The problem- this medication is costing me $300 per month. I do not have medical insurance, and the Arizona state insurance is dragging their feet. It has been more than two months since my emergency application was put in for medical coverage, and I have still not heard back from them. For the time being, I am covering all of my follow up visits and medications. I am also starting to field phone calls from the hospital and ambulance collections departments. This added stress is certainly not helping matters any, but the medical bills will get paid when I can. It was the hospital collection department that checked on Monday and found that my insurance application is still in pending status. Grrrrrr..... Ah, I digress. The insurance is a whole different issue.
The Pfizer corporation, the manufacturers of Lyrica, have generously set up a patient assistance program. If one is unable to afford the medication, like me, the doctor can fill out a form that proves he or she has prescribed Lyrica and prove that it is needed. My doctor filled this out, and I got the forms to send in yesterday.
Here's the part that made me blow my top. The doctor included his notes from the hospital as well as from the follow up visit. There is not one part of the description that is accurate. He said that I describe my feet as tingling and like I am walking on cotton balls. Not once during this ridiculous experience have I felt like I was walking on cotton balls. I could only DREAM of my pain being described as tingling. I actually feel like a knife is being put through the bottom of my feet with every step I take. I feel like there are boards stuck to my feet when the pain gets to be too much, causing me to walk like a duck and not bend my feet. This has ALWAYS been the description of my pain, and I don't know how anyone would get COTTON BALLS out of that!
The report says that I deny changes in vision (really? Is that why I haven't driven a car by myself since April 1st and have only been able to drive three times with Daniel in the car?) and that I have no trouble with speech (who was this doctor talking to? I couldn't get three words out without slowing down to find one that had gotten lost in my brain. Maybe he thought I was always that stupid?) even though I was, at that point, so nervous talking that I would break out in a sweat. It also said that I could walk with no assistance. I came into his office using a walker for crying out loud- one that HE prescribed for me upon leaving the hospital!
The one that really gets me? The report says that I am "able to do [her] daily activities with no problem." Are you freaking kidding me? Seriously? Does this guy think I ENJOY sitting on my couch for 13 weeks now, doing absolutely nothing? Every time I think about this I get so sick I could throw up. I am extremely agitated. I feel lost; there is nowhere to turn to get out of this mess.
Here's the official diagnosis:
Herpes Zoster (shingles) with other complications
Paresthesia is tingling in the extremities due to nerve compression or damage. I don't HAVE tingling! I have PAIN, serious stinking PAIN that brings tears to my eyes while I walk through the grocery store.
So, I called the doctor yesterday to find out what this report is all about. Guess what? He's on vacation! He'll be gone from the office until the first of August. I can't see the other doctor in the practice because their rules say I have to have permission of the doctor to switch. Oh, have I mentioned that I don't have health insurance? There is only one other doctor in the entire Phoenix area who will see a patient without being covered. So, I will have to call my general practitioner to find his name and see if we can start all over. I don't want to do that, but I NEED to be seen for the actual symptoms I have. I am terribly afraid that I've been treated for the wrong disorder for more than three months. Excuse me while I go beat my head against the wall.
So, that's my story. I don't know how to get a doctor to listen to what is ACTUALLY wrong with me! My stress level is above my head. I am drowning. This strong woman (according to my husband and you, my wonderful readers, friend, and family) is losing her grip quickly. I am so afraid, angry, and I want to give up. I want to throw my hands in the air and just crawl into a hole. I'm trying not to think about this, yet I need to get the issue handled. I'm off to occupy myself and to try not to scream.
UPDATE: Thank you, Robin, for the name of a neurologist who is willing to see me without insurance. I have an appointment on July 25th. It's another month to wait, but it gives me hope that someone WILL listen to my symptoms. The final outcome may be the same, but it is comforting to know I will be getting a second opinion.