Journal

So my blood work came back ok last month with the exception of my white blood cell count was high so the doctor said I may just be fighting off an infection of some sort.

I am not currently working b/c I was laid off from my job back in April and I am having a hard time finding another job in this horrible economy. I have Cobra health insurance coverage for my medical bills but the cost of my insurance is half of my monthly income so needless to say, my finances are sinking fast. I have been trying to get cheaper health insurance but I have been turned down by three insurance companies now so I plan on applying for Tenn Care. (Tennessee offers discounted health insurance for some people in similar situations as mine, and I hope they will help me.)

I did get the referrals to the new doctors. I had to cancel my neurologist appointment because I did not have money for the co-pay and I felt like pain management was more important. (My old neurologist had me do MRI scans about 6 months ago so I do not feel there is much for a new neurologist to do at the moment.)

I am very excited about the new pain management doctor. He seemed really nice and genuinely interested in me and my case. For the first time in a LONG time I felt like there just may be a ray of light at the end of the tunnel. As far as treatment goes he asked me to step down on my Lyrica from 600mg a day to 400mg a day and he started me on Methadone 5mg, one in the morning and one and a half at night.

I was doing a little better at first but with the weather changing and getting colder I am still having some pretty rough days. Last week was a horrible week for me, I was in a tremendous amount of pain and that hopeless feeling was starting to set in again. This week has been a little better. I think my medications still need some adjustments.

One thing that has been bothering me is just the word “methadone”. It is used to treat major drug addicts and just sounds like a scary word. I did some research on the net and methadone is said to be one of the most difficult medications to get off of and that scares me. I have to take the methadone everyday. I guess I am just the type of person that would rather take pain medication on an as needed basis. If I am having a bad day and I need to take 3 pills then so be it and if the next day is better for me then I can have a drug free day. I think it would be nice to have a drug free day when the pain gives me a break. I hate feeling so medicated all the time. My other problem with the word methadone is maybe the social connotation of the word itself. I like to be able to keep my friends and family up to date on my battle with TN and for the first time I felt myself give hesitation to telling them about my medications. I recently went to a caving event (TAG Fall Cave In) where I was camping for 4 days. The event housed over 1,200 people. There were about 12 people in the circle of friends that I was with. It was my 5th year going to this event but for the first time ever at one of these events I was in MAJOR pain. I spent several hours in tears so I was forced to inform my camping mates of my condition. Most of the time I do not mind talking about TN and helping to inform people about it, but this time was different and I think it was because I knew there would come a point where they would ask me about treatment and what I took for the pain. I did not want to tell people that I took methadone. Why? Can anyone relate to this?

Here is something weird too. It all started a little over a month ago. My right had started feeling numb, like it was asleep or something and it was swollen. At first I did not think much of it. I just assumed I had slept on it wrong or something but the swelling and numbness never went away. After a few days I started to get a little concerned. At first I thought maybe I was having a reaction to the methadone so I looked up the side effects. Swelling of the feet and legs could be a side effect but not the hands. I called the pharmacy and my pain management doctor that prescribed the Methadone and asked their thoughts and both seem to think the medicine was not the reason. If it were the medication it would have started soon after starting the medication and it would be both hands and not just one. I know it is not an allergic reaction to anything b/c I have not changed anything in my house.  I called my primary care physician and just asked for any ideas of what might be wrong and find out if there was any reason to really be worried. The nurse said she did not have any clue what it could be and they would really need to see my hand. Well, I really did not have the money to pay co-pay no one seemed to think it was very serious so I declined to make an appointment. I decided I would just give it a while and see if it went away. The swelling began to get worse; I was not able to do much with the hand b/c it just felt strange, like it was asleep and the swelling got so bad it hurt to even pretend I was going to close my hand to make a fist. This past Monday when I woke up my left had was swollen and felt like it was asleep too so I decided that maybe it was time to bit the bullet and go see the doctor. The first available appointment was on Thursday so I booked it. Monday was pretty bad b/c both hands were swollen and numb. I could hardly do anything for myself. Tuesday the left hand was feeling a little better and by the time Thursday rolled around my left hand was fine. I went to the doctor and of course she had no idea what was wrong, not even a guess, and no freaking clue. She gave me a steroid inject in the arm for the swelling and decided to run blood test again. The swelling is down but my right hand still feels like it is asleep. I should know about the blood results sometime this week. If those come back ok then she said she would have a nerve conduction study done on my right arm. This is crazy I am 29 years old and my body is falling apart on me. Does anyone have any ideas what could be wrong with my hand because my doctor does not seem to have any?

Well, today is Sunday and my goal for the day is to get my application for Tenn Care (health insurance) in order and ready to turn in. Monday I plan on going to the department of human services and turning it in. I am not looking forward to going. I am a very impatient person and I HATE to have to wait. I foresee me sitting in a waiting room for 2 hours before anyone sees me and then they will say Thank you for the application and we will get back to you later. I will most likely get a turn down letter in the mail a few weeks to a month later and then the fight for my health care will begin. It is so not fair that my health insurance takes up half of my monthly income so I no longer can afford to make my rent, car payment or any of my other bills. If anyone else is having similar problems I would love to hear about them. Other than that I guess I am out of here. Thanks for reading my rant and I hope everyone is doing ok. Have a good week.

Things are ok. I have asked for a new neurologist and a new pain management doctor. Hopefully I will get in to see them soon. I hate the fact that my doctors do not care about me and do not take me seriously. I am out of pain medication so I’ve been taking 15 – 20 Advil a day. When I went to my primary care physician the other day to ask for referrals to new doctors my blood pressure was REALLY low so they are doing some blood work. I’m sure its ok. I’ve just been feeling kind of hopeless at times but trying to keep my chin up.

I went to my pain management doctor for the third time today and I about lost it when I was trying to talk about my pain and she said it sounds to me like you might have TN. Was she even looking at her file? Of course I have TN, why else would I be there? I get so sick of doctors that could care less. It is moments like that when you could not feel more alone.