Sunday, September 23, 2012
I am having pretty extreme numbness and tingling in my limbs and a very heavy heart/lung pressure at night. I still feel like my current combo is not strong enough. In a few weeks when I meet with my LLMD, I want to make a much stronger combo. I want to make sure that any symptoms I'm having are definitely from herxing and not progression.
Tomorrow I get another blood test done. It's the first blood test I've had since starting a new medication. Since I've had a lot of liver issues (both on and off meds) the first test of a new med always makes me kind of nervous. Usually when I'm feeling really badly, my liver is normal. When I feel slightly better it's elevated. Judging by how I've been feeling, it's normal this week but we'll see.
I've had a sad day today. I was thinking about how last week I was forcing my way on difficult hikes every single day to try to burn off some of the unrelenting anxiety that was literally driving me crazy. This week, even after a vitamin IV that usually makes me feel great, I was barely able to walk one time. I struggled with dizziness and heart and lung pain. I had to lie down at the halfway point of the trail on a cliff of rocks. If anyone had seen me doing that they would have either thought I was crazy or thought I needed immediate medical help. I just can't believe that not only am I losing the ability to go running, but I'm also struggling severely to even walk any distance.
I was also watching some of the music videos I've done over the years. I am completely unable to perform any longer. I had worked nearly my entire life to get to the level I was musically and now due to the unpredictable paralysis/neuropathy of my hands, I am probably able to play at about 10-20% of what I used to. Will that be reversible or will it progress until I can't even play at all? What do I do with my life now that I've completed college degrees in a field where the use of my hands is absolutely necessary? What job doesn't require accuracy in hand movement?
Sometimes I think to myself, why does this happen to people? I know that things could always be worse, and there are much worse situations that a lot of people are living with every day, but why? Why do so many people have to struggle with terrible hardships and what lessons are they learning that couldn't be learned in a less psychologically and physically damaging way? Why do some people have things so easily and others must struggle every day?
I have friends that literally have no worries. They make six figure salaries, have beautiful families, million dollar homes, and are in perfect health. These people often say to me........"Why don't you just go on IV's if that is the strongest and most likely to get you better?" They have no concept of the fact that I am struggling just to purchase food each week and could no way afford to pay $700 per month for IV antibiotics on top of my already insurmountable bills and college debt. To them, that's unheard of. They have never had to worry about money. What I'd give to be in that position!
Well I guess I'm going to have to accept the fact soon that there are a lot of things about having a chronic illness that I can't control. I have a VERY hard time dealing with that. I have been so obsessive with my food intake for nearly a year because that's one of the only things I CAN control. Everything else feels out of control in my life right now.
I have no control of when my medications are stopped. I can't control my liver enzymes no matter how much detoxing I do. I can't control my symptoms which continue to get worse. I can't control the opinions and thoughts of so many others who constantly tell me that Lyme is not serious and that I'm exaggerating. I can't control that no matter how many positions I apply to, I am apparently not qualified to work in my field even with three very specific college degrees.
So what can I control? I can control my mind and continue to research in the hopes that I will find something that will work to make me feel better. I can also control my personal choice to not start any medications that have the potential to become addictive.
A few months ago I met with someone who also had Lyme along with other serious non tick-related infectious diseases. I had never met this person before. The connection came from the leader of my state's lyme organization. Within minutes of meeting with this person, it became clear to me that he had a drug problem. He was taking oxycodone along with several other street drugs. In addition, he was on tons of anti-depressants along with valium and xanex. He even tried to offer various medications to me! I was absolutely shocked.
This troubled me severely. I thought to myself, what if I end up like that? While I felt badly for this person, I felt like this type of behavior is what makes some doctors treat Lyme patients badly. I know for a fact that one of my acquaintances who is a doctor (he doesn't know I have Lyme) thinks that most "chronic" Lyme patients are seeking pain meds and disability.
I completely disagree with that doctor's view of chronic Lyme patients. I don't believe that all of them are seeking pain meds. I for one, am extremely resistant to all medications. I also feel that most of the true Lyme patients that are seeking disability, likely need it.
I can't however, relate with people that are self medicating with controlled and illegal substances. It is completely against my values. I will not be meeting with this person again. I cannot take the stress of trying to remain polite to someone who is doing something that I am so strongly against and trying to convince me that it's helpful and I should "try it." I feel like the type of behavior he was exhibiting is what gives Lyme patients a bad rap with doctors and that angers me.
Posted by Key Lyme Pie