Nice Cold Spring Day in Vermont

   I was just reading the blog of a woman who has had Chronic Lyme Disease for many years, but through the combination of IV medication, oral antibiotics, bicillin shots, and hypobaric oxygen therapy (along with many herbal protocols), she is 75-80% healthy, and claims to have the Lyme out of her system. It took her four years to get back on that track, and her symptoms were ten times worse than mine. I suppose that is encouraging. I was just googling “how to deal with the stomach pain from herxing,” and I found this woman’s blog. She did say that stomach pain was a big sign of herxing, which is a daily symptom for me since being on this Azithromycin/Artemesia protocol. Yes, that and nausea. She said to hang in there and don’t quit, no matter how horrible you feel, even if it is killing you. I guess in my eyes, if it does kill me, at least I will have gone down fighting, not just have sat there and done nothing. Maybe that is too dramatic-sounding, and I apologize for that, but it just illustrates to me how serious of a fight this is. I am fighting for the right to get my life back, and I have to do all I can to secure that reality. I think I realize that more this time than I did all the other times I’ve attempted different protocols. She couldn’t emphasize the importance of Flagyl enough, although that drug is hell on wheels. I remember being on it once for just five days, and it caused me to be bedridden and just so weak..actually developed C-Diff. from it. She did say though that it has the most potential of all oral antibiotics in the killing of spirochetes, while at the same time warning people of constant herxing. Fun times. I’ve actually asked my Lyme doctor in the past about this, but she is hesitant to put me on such a strong drug, although I am all “come on, give me your strongest drug. I have to kill this disease once and for all!” She is more about gentle healing as opposed to “hit every spirochete at once.” I respect that, but I may ask her again at my next appointment.

 I actually pushed myself to go out today on my own. It was a challenge to myself..wanted to see if I could do it, and plus, I was trying to get some exercise. I walked a mile to the country store to pick up a few things and then walked back. Of course it was kind of a cold day, so that didn’t exactly help my heart–was gasping for air at times. Still, I am glad I did it, and feel proud of myself for doing it. I think next time though, I will wait for a warmer day to go out. It is full-on “mud season” in Vermont now, and I am surprised that my Uggs didn’t get stuck in the mud while walking up our driveway. I saw a person that lives near us–about three houses down, walking with his dog. People in the neighborhood are pretty friendly, I’ve found, although I don’t see them very often due to being unable to get out of the house most days.

One weird symptom I am noticing is facial flushing, almost as if I have been blushing. I didn’t really have that before starting this treatment. Of course now I don’t have to bother with wearing my trusty Nars Orgasm blush, as this facial flushing is already adding color to my pale face. I try looking at it like that..kind of helps me. I add moisturizer to my face after cleansing, so it’s not really dry skin. Ok, so new symptoms since starting this protocol a week ago (yes, it has already been a week, believe it or not) are: stomach pain, nausea, headaches, facial flushing, dizziness, brain fog and emotional outbursts, and pain in my arms and legs. Welcome to the land of Herxville. I made my carrot ginger dish tonight, which was delicious, if I do say so myself. The ginger kind of helped ease the stomach pain, so that was good.

Tomorrow is Sunday, which is a day usually reserved for Garrett and I to just relax and spend time together–no chores like laundry or cleaning (that is on a Saturday), although I may put a load of laundry on tomorrow. We usually just play the Wii, eat snacks and watch tv, listen to music, etc. I look forward to Sundays, and am planning on beating him at most of the Wii games, if not all! LOL 😀 Will try to get some rest right now, so I can be up before 1 in the afternoon. Night all. 🙂

Kind of a poem I wrote, although it is very off-sounding, due to lack of practice in writing and brain fog. Here it is anyway.

 

— Too Much To Ask–

Sometimes the heated weight

Of this week

Hovers in static smoke

At my feet,

Hassling the nails

From the floor–

Leaving

Cold ashes

To stew

In forgotten gardens.

I want to walk—

No, want to jump

Across

The feverish,

Tangled flowers

Locking

This unknown life

Away from light.

Seven lost years

(Maybe more)

Is too much

To ask.

Calm Before The Storm?

  Today was not a bad day health-wise, thankfully. True, I did wake up later than I wanted–1:00 in the afternoon, but I at least got myself ready and took a shower. To many in the world, that is  part of a daily routine, but I consider it quite an accomplishment for me, as I am usually way too tired to do anything but sleep and watch tv. I did feel a bit dizzy, but no scary symptoms today..yay! I was thinking maybe this is the calm before the storm–that it will get worse in a few weeks, but I am trying to remain optimistic. Garrett and I were talking about the treatment, and we both thought it would be for at least 3 months, if not more. He brought up the PICC line, and how maybe I should try that again as a last resort. I had nightmarish flashbacks of how it used to be when I had one in four years ago, and I definitely do not want to revisit that. My mom was amazing in how she gave me the daily infusions of Zithromax–still don’t know how she did it. If I were the one doing that, my hands would be shaking like crazy. I said that if I do have to have another line inserted, I want to be the one to infuse myself. I didn’t really care for the visiting nurse idea, and how one had to come by every Thursday to change the bandages and flush the line. It freaked me out..always thought one would mess up. It turns out one did, and I cringe whenever I think of how she messed it up, and I had to have the line pulled because of her. Yup, if I did try another protocol after this one, it is NOT going to be an intravenous line inserted into my arm. I don’t even think Lyme doctors use this method of treatment as much now, or at least according to my Lyme doctor they don’t. I think I just need to be patient and give this particular protocol time to work, although patience is not one of my strong suits. Patience is overrated.

  What I do need to start doing is exercising, as that is part of a Lyme patient’s recovery program. We have the Wii here and the Xbox Kinect, so maybe I’ll use those. We used to have the ExerciseTV on our tv when we had Comcast, but Charter isn’t as good and doesn’t offer that option. It is supposed to be light impact and I’m only supposed to exercise for an hour. Light impact..hmm..those words are not in my vocabulary either, along with patience. I am so used to being an “all or nothing” type of person, and I can’t be like that. I need to pace myself and just start this in a slow manner. The Wii Fit is pretty light impact, so I think I’ll try that tomorrow. Exercise and a healthy diet..how boring does that sound? I am not craving sugar so much as I am salt–potato chips and pretzels do not stay around for long in this house! I know it isn’t very healthy, but salt does make me feel better and wards off the fainting spells. Plus, with all the water I am drinking, a little salt isn’t really hurting me. Luckily, the Lyme Diet (there is actually a book on that alone, complete with recipes) features a lot of vegetarian meals, so that isn’t too much of a stretch. I actually like tofu and vegetables, and eating more fruit helps too. Of course, I do crave a glass of wine every now and then, although I am not supposed to have alcohol on this. Sometimes though, it does help with the shaking that occurs. I think white would be better, as it isn’t as full-bodied as the reds tend to be. I am really reserving it for when I get the shakes though, and that is it. Benadryl helps the shakes, yes, but it also knocks me out for several days..not worth it. Plus, I hate the taste. Garrett made a delicious artichoke hearts and leek dinner over tomato basil couscous..so good! He is a much better cook than I am, although I have my 2-3 dishes that I’m pretty good at, namely my carrot cashew ginger dish. I also make a mean frittata. 🙂

We are both watching past seasons of the show, Weeds, on Netflix. I didn’t really like it at first, but Garrett got me into it. Now I look forward to watching it. The show’s theme song is always in my head though..kind of annoying. Netflix is great! We just hook our Wii console up to the tv, and we’re able to watch movies and tv shows. We saw one movie the other week called “Let the Right One In,” which was kind of a coming of age vampire story. It had Swedish subtitles, and the Swedish landscape was gorgeous. It sounds strange to describe a vampire-oriented movie as sweet, but it was sweet in some moments..heartwarming, although very gory in some scenes. I liked it though..kind of a Twilight-esque type of movie.

Ok, I am signing off for the night..going to try to get some sleep, with the emphasis on the word “try.” Night all. 🙂

Vitamin C+Artemesia=Not a Great Idea

   I know I said I would write another blog entry earlier, and as promised, here we go again! I know that in the last blog post I talked about herxing a bit. Let me just say that the herxing kind of intensified. I think my stomach hates me. I can almost hear the little spirochetes saying: “no, no more treatment! We want to live, and in order to do that, we are going to make you feel miserable!” Yup, it’s pretty much a war. I did find out though that taking Vitamin C and Artemesia together is not generally a good idea and should be avoided. I googled it just now, as I was kind of wondering if there was maybe a bad interaction. My Lyme doctor didn’t tell me this, although I am not blaming her. I think that a lot of responsibility falls on the patient, and if they are going to get well, they have to do their homework–research what they are taking, and what they cannot take. Now I know that I have to space out the Vitamin C and Artemesia. Maybe that will help with some of the herxing. I may even have to cut back the dose of Artemesia to just one pill a day, instead of two. My Lyme doctor kind of warned me about this–that if I started to herx quickly, to kind of back off of the two pills of Artemesia and just take one. I may try that tomorrow. Hmm, this is just day two, and I haven’t even started the Lyme tea yet! I still have to call the woman (master herbalist) who makes it, and see if I can order it from her. It’s about $21, which isn’t too bad, and includes Cat’s Claw (not actually made from the claws of cats), Red Root, Sarsaparilla and Japanese Knotweed. Supposedly I would have to drink one pot of it a day. Yeah, sounds yummy. I like tea, so maybe it won’t be too bad? I don’t know if it’s just me engaging in wishful thinking, but I have noticed that my heart palpitations are slowing a bit, due to the addition of CoQ10 to my protocol. That is good at least.

Garrett and I were just watching Two and a Half Men and Mike and Molly earlier, although I started to fall asleep at the end of Mike and Molly. I love that show! The humor is creative and I just think the actors/actresses are funny. I hope the show won’t suffer because of people tuning out to Two and a Half Men, which is right before Mike and Molly. Charlie Sheen has so many issues, and it is a shame, as I believe he is burning his bridges and kind of biting the hand that is feeding him (two cliches in a row there. I am good). His career kind of took a nosedive in the late ’90’s-early 2000’s, so he should be grateful that Two and a Half Men has done so well. I just don’t understand why he is acting in such an unstable manner..wish he’d grow up and just seek treatment for his addictions. I know it’s easier said than done, but if I can go through a painful and prolonged treatment protocol for my Lyme Disease (which is probably going to last for a long while), he can endure treatment for his addictions–get his life back on track. He can at least make the effort.

I am craving more Spring Rolls now–what Garrett made for dinner. They were absolutely delicious! I made an awesome peanut butter dipping sauce to go with them, and I think I am actually craving the peanut sauce more! 😀 They are usually just meant to be appetizers, but we had quite a few of them, so they were surprisingly filling. They’re not that difficult to make and it doesn’t involve cooking over a hot stovetop, so that is even better. I think the medication is making me hungry. At the risk of sounding like a pig, I had the leftovers from last night’s dinner, the sorbet that was left over (wasn’t a lot there though) and a handful of cashews earlier today. I just couldn’t stop eating. I guess that is good…have to keep my strength up, but I would rather not gain 20 lbs. while undergoing treatment. That is the last thing I need. I’ll have to Google Azithromycin+pigging out and see what it comes up with.

Ok, off to the Land of Nod now. I need my beauty sleep (need all the help I can get there, although a good moisturizer helps make me look a little more glow-y and healthy). Night night.

A teensy tiny bit of herxing

  I knew this would happen sooner or later, but was hoping it wouldn’t be sooner. I am herxing a teensy tiny bit already. I suppose that is a good sign–means the disgusting spirochete invaders are dying. I wasn’t expecting it to happen so quickly though. Twenty minutes after taking my Azithromycin and supplements, I began feeling kind of nauseous and dizzy, and when I got up from the couch, I felt like I was going to be sick. I guess today is going to be a laying low kind of day, at least until this passes. I know it is only going to continue from this point forward too, but it helps to have an end goal in sight. Mine is: 1) I want to be able to work again 2) I want to be able to have children–healthy ones 3) I want to be able to just wake up one day and not feel like my body is being controlled by the Lyme. I think as long as I remember those things, I’ll continue on with this. If not, I know Garrett will push me and remind me of those goals! 😀 It does help that it is snowing out–although at this time of year, the snow should already be long gone. It helps though, because if it was sunny outside, I’d feel worse about being cooped inside, as if I was missing something. One thing I am concerned about with all these pills and water I am drinking is if the kidneys can handle it all. I’m already feeling a slight pain in that area. Hmm..may need to call my Lyme doctor and ask her. She welcomes my questions and concerns, which is a good thing, as I’ve been to so many doctors who just didn’t care.

   One thing I am looking forward to is the beginning of baseball season in April. I remember going to a Red Sox/Yankees game with my dad last May, and it was amazing. I had never been to a major league baseball game before, and it was definitely exciting, even though the Red Sox lost. I am hoping that Garrett and I can go to a Red Sox game some time, even though I have heard it is more expensive to go to a game at Fenway Park than it is Yankee Stadium. I am wondering why that is. You would think it would be the other way around, as the new Yankee Stadium is bigger. Hmm, maybe that is why, the exclusivity of Fenway Park, and how it can only seat a set number of people?

I am sure I will write more later on, but this is it for the day. More thoughts tend to creep into my mind late at night anyway. I know I am supposed to be sleeping..you know, basking in the healing effects of sleep, but it’s difficult when I’ve been an insomniac since age 5. I honestly don’t know how I used to wake up at 5 every morning when I was in high school, and then repeat the same habit in college. I guess I was a tad crazy!  Bye for now. 🙂

First Day of Spring=New Beginnings

  Well, I copied and pasted some of my older blog entries from Blogger.com onto here. I wasn’t really a fan of the set up of Blogger.com, and did not believe it to be very user-friendly. So, here is my new attempt at blogging on a brand new site (at least to me). 

 I did have my appointment with my Lyme doctor on the 15th. It went pretty well. I discussed how I wanted to be on a new protocol, as the ones I’ve tried in the past didn’t do much, or to be brutally honest with myself, didn’t work because I didn’t stick with them as faithfully as I should have. She agreed, and wanted me to try 500 mg. of Azithromycin twice a day, along with Artemesia twice a day. There is also Adrenal Support, Fish Oil (for the brain fog associated with the Lyme), CoQ10 (for the heart), and Vitamin C. I am also taking Nystatin to help avert the oh-so-gross side effect of heavy duty antibiotics–candida. She also recommended a potent Lyme tea, which I haven’t tried yet, but intend on doing so soon. She wanted to see me in a month to assess my progress, and also set up an EKG to check my heart, test it for atrial fibrillation, as when I was on the Zapper (product endorsed by Dr. Hulda Clark), it kind of messed with my heart a bit.

Today was my first day of treatment, and I know it is early, but I haven’t noticed any worrisome side effects, or herxing yet. For all those who aren’t aware of what herxing is, it is short for “Jarisch Herxheimer” and describes the painful die-off reactions from killing parasites. You can always google it, I suppose. I think I am going to be on this for at least three months, if not years. Garrett has already promised that he won’t let me quit, no matter how much I may want to at times when it gets difficult. That is what I want and need. I can’t give up on this, and it may be easy to say that after just the first day, but I really can’t. I did feel a little woozy and dizzy after a few hours of the meds, but that could also be because I kind of pushed myself this weekend and I usually pay the price for that. We had a few people over on Friday night, and on Saturday we went grocery shopping out of town, and drove back into town, so that I could attend a friend’s birthday party. It was nice, especially considering that I am not used to being this social and sometimes have to push myself to “get out there”, but when I do get out, I usually enjoy myself and have fun. Nevertheless, it was wonderful to just stay at home today and relax–play Wii games with Garrett and watch our “Animation Domination”–Family Guy, Bob’s Burgers, The Simpsons and The Cleveland Show on tv. 

Since it is nearing 3 in the morning, I should probably get some sleep (seems to be my bed time lately). Good night to all in Blog-Land.

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. 🙂

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.

Lyme Colored Glasses

     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.

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