Friday, September 28, 2012
What do I do? How do I get a job when half the time I can't move my left hand, am dizzy all the time and am so weak I cannot stand? How do I pay back this debt? Loan lenders don't care about your problems.
My car is also on it's way out. It's over 100,000 miles. That will mean I can't travel to doctor's appointments. I have no other way to get there. There is no public transportation in my rural area.
Doctors appointments..............that's another thing that will prevent me from taking a normal 9-5 job even if I am offered one. I don't think too many employers will be okay with letting a new hire out early once a week for appointments. Not that I'm even being offered any positions. I have 3 college degrees and cannot even get a minimum wage job in retail or food services.
Things are just not good right now. I have not slept in days because of a chest pressure that keeps me awake and makes it uncomfortable to sleep on my back. I'm so exhausted during the day that I can't function. In the early morning I'm up worrying, searching for jobs, and trying to figure out what I can do to get myself out of this mess.
The other day, I was at someone's house visiting. A little girl asked me if I could braid her hair. This is something I've done thousands of times. As I went to start the braid, I realized I suddenly had no idea how! I couldn't remember how and could not do it. Shortly after as we were watching a movie, I realized that everything sounded distorted. I felt extremely strange and I couldn't understand anything I was hearing. This stuff is getting scary! I don't know what to do anymore.
I am sometimes so sad. I feel like Lyme has taken away my whole life. I feel like I'll never be able to afford the treatment to get better and I'll just keep declining. I am so upset with my life right now. I literally have lost everything this past year. I have no career, no spouse, no finances, no level of health, and right now it just seems like no positive future. The only thing I have is piles of mounting debt that I cannot repay and symptoms that seem to worsen day by day.
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.
Friday, September 14, 2012
This is not good. I went from too weak to do anything to over the top energy in a very short amount of time. It's not healthy energy. It is definitely going to be detrimental for me to continue this amount of exercise, particularly since I am not eating a normal amount of calories. Logically, I know I shouldn't run or go up mountains, but I can't help it. My mind is racing and I'm out of control. I can already feel some of the negative effects this is having on me as the numbness in my left hand yesterday was much worse than usual.
I believe the anxiety is from pesticide/insecticide exposure again. It always happens shortly after I breath in air from a recently sprayed lawn, or am near someone who is coating themselves in DEET. This week, several houses nearby were spraying their lawns. I was unable to avoid breathing in the fumes because I had to wait outside for children to get off the bus.
I did start Ceftin a few days ago, but I don't think that is causing the anxiety. However, with this episode also came a strong concern that I have weakened my combo by pressuring my LLMD to switch me from high dose doxy to Ceftin. When I wanted to switch, I did not expect him to switch me to a very LOW dose of Ceftin. If I had known, I probably would not have changed it and would have instead discussed adding biaxin to the combination or substituting Tindamax or Flagyl for Plaquenil.
I called the office to express my worries about having switched the meds. It was the first time I have ever called for that reason. They told me I can switch back to doxy if I want. I don't know what to do. I know I'm not myself right now because for the first time ever I want someone else to decide for me. I absolutely hate this feeling of being completely out of control. I like the fact that my LLMD includes me in making decisions, but this time, I'm not in a place to decide. It's putting more stress on me that if I make the wrong choice, I could potentially allow this to progress again and cause more damage.
I am worried about this low dose because now if I get new symptoms or get worse, I will know it's likely not due to a Ceftin herx because the dose is far too low to do any good.
Monday, September 3, 2012
Today I woke up with another new symptom. I kind of expected that something was changing since I've been having a few unusual symptoms the past few weeks. I hope that nothing really severe starts up this week.
Sometimes when I write this blog and look back on certain things, I think..........I should have seen that coming. I almost feel like writing things down makes me worry less.
For the last several weeks I've been having a lot of heart problems. I've always had minor heart palpitations, but these are stronger. I've been getting chest and lung pain along with a very rapid and irregular heart rate which completely prevents me from running.
Several times I tasted blood in my mouth while running. That scared me quite a bit so I've backed way down from exercising. The chest pain and shoulder pain worries me. I've refrained from all running this week. Even so, I've been getting a racing heart up into my throat randomly without activity.
Then came anxiety this week. I haven't had that for a while. It was completely preventing me from sleeping. I felt like I needed to go running, but I obviously could not.
In the past, the anxiety always seemed to coincide with exposure to DEET (I don't spray it on myself but many of the people I'm around on a daily basis do). This time I'm not sure if that was the cause.
Then this morning, I woke up to a pretty unusual symptom. After two nights of very restless sleep, all of a sudden last night I was able to sleep without the aid of benadryl or valerian. I fell asleep early and was completely out. I did not wake up for nearly 12 hours.
When I woke up my entire body felt like it was vibrating and trembling although it was not visibly moving. It kind of felt like if you are holding a weed-eater or something. The only other time I have had that sensation was when I broke a bone. It feels like a vibrating numbness. Sort of like what happens right before you lose all the feeling in a limb. Except this was not only my hands, but my arms, legs and head.
I don't know what's going on this week, but I still don't want to back down off meds. I went from really bad exhaustion and a high fever/flu last week to a week with lots of new stuff going on. I hope my LLMD is thinking the same thing when I meet with him next time. If anything, I would like to hit this with something stronger, not back down or "take a break."