So I have to admit, I have a lot of anger built up in me right now… I’m so frustrated with the way that our medical system works and I’m so frustrated with dealing with Kaiser. I hate feeling like I am at the same intellectual level as the doctors I am seeing. They may have a little bit more textbook knowledge but when it comes to common sense or thinking outside the box I honestly feel like I am more competent than most these doctors at Kaiser… It should not be that way, that thought, that feeling, should never cross a patient’s mind…
Today once again I woke up in pain and I just knew that there was no way I could go to class and take care of business so after talking with my mom and doing some thinking I decided to drop the class while I could still get a refund because I am just not mentally, emotionally, or physically ready to go to school and actually do well. If I’m going to pay for a class I want an A and right now I know I can’t give it 120% like I should be able to… So I dropped my class and decided that for this summer I’m going to focus on getting control of my health because it’s getting worse and worse pretty rapidly. I called the appointment center and set up a doctor’s visit with whoever I could get in with and even though I didn’t have any hopes of accomplishing anything I still left feeling rather disappointed and frustrated.
This doctor insisted that the cause of my current pain was me stopping my Copaxone and steroids but I explained to him that the pain started about a day or two after I had stopped taking my medication. I have missed doses of Copaxone before and never felt any change in my symptoms. He also insisted that I start taking prednisone again but refused to agree that an IV treatment was necessary. He told me to take the prednisone (40 mg) until I see my neurologist next week and leave it up to him. My impression was that he was avoiding the responsibility of making such a decision even though I already knew what I wanted.
He agreed to write me a prescription for Percocet but he said OxyContin was completely out of the question even though I was not asking for it. Funny, Percocet and OxyContin to my understanding are the same exact thing only Percocet contains acetaminophen and OxyContin is simply a slow release form of the medication Oxycodone which is what Percocet is… He was so against the use of OxyContin but Percocet was not a problem… Maybe I’m missing something here but this just seems a little odd…
I also brought up LDN just for the heck of it and man, he cut me off before he could even finish my sentence with “You don’t need that”. Those were his exact words, “You don’t need that”. Then I pushed it will the fact that it has helped so many others and that there is promising research to support it and that I wanted to try it because none of the traditional treatments including the prednisone he was so desperately pushing me to get back on has helped me so far and I thought it was time to try some nontraditional routes. He ended the conversation with “Well I don’t know enough about that so you will have to talk to your neurologist about it”.
Whatever, I took my Percocet prescription and I left. This is exactly what I expected of a Kaiser doctor. So I’m going to make some calls and see how much it will cost me to visit a doctor who is willing to prescribe LDN and how much the medication will actually cost me without insurance. I’ll then get my LDN and tell my Kaiser doctors “Look, this is what I’m taking and whether you like it or not I will continue to take this medication so long as it’s helping me so work around it”. All Kaiser wants to do is give me prednisone, prednisone, prednisone. I don’t know what’s up with them and prednisone but they hand it out like candy on Halloween. I’m not taking prednisone like he instructed me to do so because that’s a waste of time and money. The whole reason I got off prednisone was that it wasn’t really helping me anymore, it’s bad to take it for a long time, and I wanted all the steroids out of my system so that if I did experience a relapse during the summer I could do an IV steroid treatment and actually benefit from it because last time I had an IV treatment I was already on 80 mg of prednisone so the treatment didn’t do me any good, it just provided me with horrible mood swings because I had already built a tolerance to the steroids. So why would I take such a small amount of prednisone when it’s not going to do anything but get my body dependent on it. 40 mg is not going to do anything at all!
So I’ll get through the next week using my pain medication as sparingly as possible and see what the next guy in line has to say. You better believe I’m going to make a scene if I don’t get my steroid treatment and plasmapheresis. I pay for my insurance so I should be able to get what I want whether they think it’s necessary or not. In October I should be switching insurance plans and will hopefully be done with Kaiser for good! I truly cannot wait!