Insomnia Gives Way to Random Thoughts

 For some reason, the phrase "if you don't have your health, you don't have anything" popped into my head tonight. I don't know why..must be the insomnia, as I have random thoughts coming to mind in the wee hours of the morning. I suppose there are some benefits to a sleepless night. I am not sure it is true, although a healthy person may disagree with me. Yes, having ones' health is very important, but if you don't have it, you learn of other ways to gain fulfillment and joy, even if the joy is fleeting. I appreciate the smaller things in life now, as corny as that sounds. I am not sure if this illness was teaching me a lesson to slow down. Before getting sick, I was very type-A, and go go go..thrived on work and learning new things. I would sometimes forget to eat and sleep, due to this overwhelming drive. Well, I suppose being on that path kind of set me up for iffy health. You can't push your body to its limits and then expect it to function normally. I get that lesson now, but I am just not sure I needed six years to learn it. I may not have my health, but I do have supportive and loving family and friends, as well as an amazing husband. I have a beautiful nephew whom I absolutely adore. I think the phrase should be changed to "if you don't have family and friends, you don't have anything." I just believe that family and friends are essential, or at least a faithful dog or cat. Hmm, maybe someone who doesn't have that may disagree with me, and change the statement to whatever in life is most important to them. I suppose it is subjective. I am not sure if I will return to the way I used to be before I became sick. I'd like to think I would take it easy and pace myself through life, instead of full speed ahead 100% of the time, but I'm not sure. I just think I have missed out on so much of life that I want to get back some of the time I've lost--make up for it. My husband says it isn't a race, and no one is competing with me, and I know that. I think I am my own worst critic sometimes, but I think most people are that way. I know it may be selfish to want so much out of life, but if I could just feel 75% healthy, I'd be happy--could work with that. I don't think that is asking too much. My Lyme doctor mentioned a herbal protocol she wanted to discuss with me at my next appointment. I don't know why I forgot to mention this before. My memory is just awful lately. She did say it was going to be expensive, and surprise surprise, insurance doesn't cover it. Insurance doesn't cover the majority of what patients desperately need..kind of makes you wonder what it is good for, although it is better than the alternative of no insurance. I would be up for a herbal protocol, although the Cowden Protocol I've tried in the past didn't really work. I'm not sure it was strong enough. I want to try the Zhang Protocol maybe, or Dr. Klinghardt's Bee Venom Protocol. There are quite a few options, and of course it is trial and error when Lyme is in its chronic stages. I just wish I could afford to pay for more things. Disability doesn't pay anything, and when I am done paying my bills, I only have a small amount left over. Yes, my husband works, but he has his own bills to pay too, plus the rent. I am not able to help him at all, and that makes me feel bad. I used to be able to contribute at least half the rent, but once we got married, the SSA took away a large chunk of my benefits, as "your husband is responsible for you now." Yeah, ok, sexist much? That really bothered me, although I was told that it would be the same situation if the shoe was on the other foot, and I was the one working and my husband was sick. I don't know, just seems twisted to me. A person still needs to pay for things they need, married or not, and it's not fair for the healthy person to shoulder the burden even more than they already are. I suppose I should try sleeping now, as it is near 2:30 in the morning. Night all.

Thursday Thoughts

     I am feeling a bit better today, but still extremely tired. It seems as if the fatigue never fully relents, and even when I do get better, I am sure that symptom will always be around to some extent. I have a doctor appointment on the 15th, so I am praying that something positive will happen. Dr. Burrascano, one of the top Lyme doctors, is giving a conference in California on the 21st, and will be speaking about alternative treatments for Chronic Lyme, and other unexplored options. I am so excited about this, and am hoping my Lyme doctor attends, so I can be aware of these treatments. I need to try something new. I've tried oral antibiotics, intravenous antibiotics, homeopathic remedies and exercise--basically everything under the sun, and I've just had modest results. I want my life back!! It is going to be hard, but I know that. I will probably herx like crazy in the first few months, but the key for me is not to give up. I can't give up, even when I become worse during treatment. I am thinking I need to start a naturopathic regimen, instead of the run of the mill oral antibiotics I've tried in the past. We will see what happens.
         What I do want is to get back to writing, and I suppose this is a start, but I want to get back to writing short stories and poetry, the way I used to. I have journals of my writing from years ago, and looking at it makes me think to myself: "Wow, the words just flowed so easily." The Lyme has really stripped me of that talent, and I feel like I cannot do anything particularly well anymore. It shouldn't be such a struggle to write for me, but I am hoping that it will come back the more I do it.
            I am just watching Top Chef now, and soap operas later. I find that they are good distractions for me, from thinking about my illness too much. I think that is paramount--distractions. If someone just sits around all day and doesn't focus their attention on anything else, they will go absolutely insane and actually get worse physically. I don't want that to happen, obviously.
          We are completely buried under three feet of snow up here in Vermont, and are supposed to get even more come Friday. I love it here, but come on, it is March. It's about time this stuff melted and made way for Spring. I feel bad for my husband, as he is the one shoveling all of it. I tried shoveling once, on my birthday, no less, and while I did feel good about doing that right after, I paid an enormous cost in a physical sense. My heart was going haywire and I started getting horrible chest pain and muscle aching..lasted for about two weeks. I know it was just so stupid of me, but I wanted to help. I always want to help, even though I usually relapse from doing so. I just want to feel useful, not like I am taking up space on this earth. I know most people who love me would beg to differ with me on that feeling--that I am valuable and useful, but when you can't physically do anything, you are bound to feel a bit unnecessary, like you are just living in the world, but not really participating in what that world has to offer..kind of just sitting on the sidelines.
               Ok, well, this is all I have to say for today..maybe will write later. Thanks for reading, although I am not sure anyone really is. Maybe? Wishful thinking. :-)
            

Welcome to Julie's Lyme-colored world!

     It is a gross understatement to say that living with Chronic Lyme Disease is difficult. It is an uphill battle every day, even on the so-called good days, when I can muster up the energy to take a shower and get dressed. Even then I am pushing myself. I try to be positive and keep my spirits up, although sometimes all I want to do is cry. I’m not always good at holding back the tears. I’ve been living with this for the past six years now—so hard to believe, but true. I can’t work, drive a car or have children. I can’t even write the way I used to, and I earned my degree in English. The words just won’t come to me as easily as they used to, courtesy of the cognitive dysfunction.  I have trouble finding words when I speak, and often times forget what was in my head five seconds ago. My heart feels like it is a thousand mile per hour freight train, even with the slightest exertion. Of course I worry about having a heart attack, even though I am only thirty years old, and it doesn’t help when I research “Chronic Lyme” on Google, only to read of a few people dying from it. I usually have headaches, muscle pain, sleep disturbances, nausea, dizziness, weakness and bone-crushing fatigue, along with the electric jolts that sometimes occur in my body. I often times wonder why this happened…could any one person be so unlucky as to be in the wrong place at the wrong time and pay for it for years? So I walked barefoot in the grass one day, as I had always done as a child, and just that one time caused me to step on a tick and be disabled for six years? Possibly more? It just doesn’t seem right. I grieve for the time I’ve lost and can’t get back, and for the future which seems so uncertain. All I want right now is for the Lyme doctors/scientists/researchers to come up with a cure for Chronic Lyme, so I can go back to my life and live it the way it was meant to be lived. There is so much research, time and money put into Cancer, and I don’t begrudge the cause or people who are ill with this particular illness, but Lyme is so much more prevalent and can cause years of suffering as well. Shouldn’t Lyme rate higher on the list of causes people support? I pass for a healthy person when I am able to leave the house, and most cannot tell by looking at me that I am sick. The one question I hate from people is: “what do you do?” I know that is a common question people ask others when meeting for the first time, but it makes me cringe. I feel like an idiot when I say: “Oh, I am disabled due to Chronic Lyme.” Of course the conversation takes a nose dive from there. That, or people want to know more about it, and the whole conversation is dominated by Lyme, nothing else. It’s a mixed bag. I should just say that I am a homemaker, because  yes, I am married, and yes, I stay at home. No one needs to know why. For all they know, I could be working from home too. I don’t know why I care what others think, but I do to a certain extent.  My family and husband have been wonderful and supportive, and I think that helps a lot. I don’t know what I would do without them. They help me get through the bad days and help me enjoy the good ones.  A lot of people (healthy and sick alike) don’t have that.  I am grateful  for the things I do have in my life, but of course my life would be complete if I was healthy enough to participate more in it. My days usually consist of waking up at 12 (waking up before then makes me feel nauseous and dizzy), eating brunch, watching tv, going on the computer, and eating dinner and going to bed. Exciting, huh?  I can’t be much company for my husband, although he says I am  fine and not to worry about it.  Although I am 30, I feel like I am trapped at age 24, as that is when I became sick and my life as I knew it came to a grinding crawl. Wow, I had no idea I would write so much tonight, but it did help, I guess.  Soooo, I guess it is official then. This is my first post. I’ve tried doing this before, but always neglect it weeks later and just forget about it altogether. I am really going to try this time, or at least that is what I say now.  Good night for now.