tag:blogger.com,1999:blog-50037150861594287072024-03-05T02:15:44.178-08:00Life with LymeHollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-5003715086159428707.post-89527376277539115802011-01-14T12:35:00.001-08:002011-01-14T12:35:25.770-08:00Pain, everywhere.<br />And hoping I don't ruin my liver by maxing out on Ibuprofen.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-83007782654833018562010-06-21T21:40:00.001-07:002010-06-21T21:43:54.549-07:00Stress Inducing ShittinessThis disease feeds off stress and I've been under an incredibly amount of it for the past five weeks, climaxing into this past weekend and tapering off to today. It's still <em>there</em>, though, this cloud that is just hovering.<br /><br />As a result, my blood pressure and blood sugar has been haywire, my pulse is lowered and then my heart races at times, I go for hours just trembling, shooting pains dash through my head and stress-induced fevers and cold sweats haunt me randomly. I can't sleep, which pushes me to the point of desperation. That's why I'm here tonight, waiting for my tylenol pm to set in. <br /><br />In the next couple of days, I'm going to have to find a place of solitude and peace. For the sake of my health, I don't have much choice.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-75181795275075815322010-06-04T07:51:00.000-07:002010-06-04T07:58:32.167-07:00Well, that was interestingOkay, let's never do <strong><em>that</em></strong> again, okay?<br /><br />Okay. <br /><br />The past three days (or was it four, I cannot even remember) I want to block from my memory and never relive again. I've never in this Lyme Disease journey....ugh. <strong><em>That</em></strong> was horriffic.<br /><br />Due to the extreme <a href="http://en.wikipedia.org/wiki/Herxheimer_reaction">Herxheimer</a> reaction, I stopped that antibiotic (doxy) day before yesterday and felt almost immediate relief. Yesterday I was nearly back to my normal energy and pain levels. Today I'm a little tired but really, I'm cutting myself some slack considering the lack of sleep and extreme pain I was dealing with just two days ago. <br /><br />This disease is a mystery and living with it every day is like trying to solve a riddle. What's overwhelming is when I feel like there's no solution (like I did three days ago) and like there's nothing I can do for myself. That's when the desperation sets in.<br /><br />Today is a new day and it's a day of celebration.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-86407625274978892052010-06-01T08:25:00.000-07:002010-06-01T08:51:44.774-07:00battling and losing sometimesI don't complain much but some days it feels like I'm desperately losing this battle. <br /><br />My fatigue has reached exponential levels. And silly me, I don't slow down until my body absolutely shuts me down. Through this journey I've learned to listen to my body but sometimes I want to live like I'm not hosting this bacteria. <br /><br />The good news is that this cycle will end, my strength will slowly return and so will my energy levels. I've just got to ride this wave out. There's always a light at the end of the tunnel, right?<br /><br />In the meantime, my page is blank, my eyes are burning, my knees are probably gonna need the heating pad soon and I'm going to need to take about a 15-minute nap before moving on with my day.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-43602064155255620632010-05-30T08:28:00.000-07:002010-05-30T09:09:01.886-07:00SickGetting sick on top of <em>being</em> sick is something I try to steer clear of. It's like jumping ten steps backward in a matter of minutes.<br /><br />So when, one by one, family members started having sore throats and I was <a href="http://lifeismyroadmap.blogspot.com/2010/05/jada.html">emotionally stressed</a> I took positive action by reinforcing my weak immune system via supplements and herbs. <br /><br />Not soon enough, apparently, because here I sit in the recliner sniffling, coughing and with the heating pad laying over my tender knees. <br /><br />Yes, I'm back to <em>those</em> days of the Comfort of the Heating Pad.<br /><br />But my philosophy is to live life to its fullest and not let this disease <a href="http://lifewithlymedisease.blogspot.com/2010/02/take-whats-yours-leave-whats-mine.html">take from me more than what it's entitled. </a><br /><br />So that's why I attended the Little League baseball draft Friday night, fever and all. And after that went to an invitation-only dinner at a new restaurant in town. And the next day went <a href="http://lifeismyroadmap.blogspot.com/2010/05/gliding.html">gliding</a> (feverless!)<br /><br />Now, admittedly, I've slept 3-4 hours every afternoon and followed that up with a bedtime of about 10 and sleeping till 9:30 the next morning. And even after all that, I sit in the recliner and try not to fall asleep. <br /><br />But I'm hopeful for today. I got up, took a shower, got dressed, drank a cup of coffee, and....am enjoying the heating pad on my back in the recliner. But I'm up, I'm up, going to unload the dishwasher and help clean up our living room, which currently looks like a frat house.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-68057203864040210612010-05-25T22:57:00.000-07:002010-05-25T23:06:08.015-07:00TwiddlingTwo Lyme posts in one month means that I'm trying to be more diligent about keeping up with this thing. I mean, if this can keep me from sleeping and make me feel like I'm within miliseconds of vomiting all day, the least I can do is write about it. <br /><br />It's 1 in the morning and while I was quietly loading the dishwasher, I reflected on today, which was a quiet one for me and until I started replaying the events in my head, felt unproductive. <br /><br />But it really wasn't. <br /><br />I managed to pick up the house, do a load of laundry, do the dishes a couple times, feed the horses, make dinner and dessert, clean my bedroom, deal with my personal finances, write a story for Thursday (complete with graph), and watch the Biggest Loser finale.<br /><br />All of those things seemed insurmountable at the time. I almost waited to ask my brother to help me pick up the house because my energy was at zero and this <em>incredible ridiculous nausea</em> had me sitting down every five minutes.<br /><br />But I just took my time and did it all at my own pace. It's not that anyone requires me to do these things; I require them of myself. My mom, little brother and sister got back from an out-of-town trip - I wanted to have a nice family dinner. So we did. Took me awhile, even with their help (and the fact that the grill blew out didn't help) but we got it done.<br /><br />Last week I started on all my supplements. That could be why I don't feel the best but this is pretty typical for me. It seems like every three or four weeks I have a couple/few bad days. Today I really struggled with my blood sugar and my heart rate. One thing I've learned through this whole thing is to listen to my body. So I rested when I needed to and got stuff done in the inbetween time.<br /><br />Alright, I'm off to try bed again.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-46971840740186993662010-05-05T19:23:00.000-07:002010-05-05T19:35:42.604-07:00AltitudeThe past three weeks have been rough in the Lyme department. <br /><br />Sleep is still giving me a hard time. I thought it was making a turn for the better (cycling back to normalcy) when two nights in a row I fell asleep quickly and with extreme exhaustion. But now I'm back to where I've been. So I'm trying to figure out the best balance to ensure a good night's sleep.<br /><br />I hate sounding like I'm whining but my knees and legs have been hurting so bad. Especially my knees. There've been a couple times where I thought I was going to fall because my left one just gave out. Tonight they're especially hurting because I spent my day on a concrete floor. Never a good idea.<br /><br />My mom and I have been discussing the effect of altitude on Lyme Disease. Her doctor has told her that higher altitude is a friendly environment for the bacteria because of the lower levels of oxygen in the blood. Deductive reasoning would lead one to believe that changing to a lower altitude would cause a reaction in Lyme victims. <br /><br />A reaction, indeed. Ugh.<br /><br />A big frustrating thing right now is my brain. It's like - I know I have knowledge in my head but retrieving it sometimes is not possible. And then I just look like an idiot when I start to contribute to the conversation and realize I'm not retrieving the information I need to finish my sentence. <br /><br />So tonight I am tired and I'm hoping I can sleep. Hope for me! :)Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-56894964109248641512010-04-28T17:12:00.000-07:002010-04-28T17:37:23.198-07:00SleepOne of my biggest struggles with Lyme Disease is not sleeping.<br /><br />My mom's doctor tells her, "If you're not sleeping, you're not healing." For me it's "if you're not sleeping, you're not healing nor are you functioning as a nice, balanced human being," which is why I work so hard at 1) ensuring I get a good night's sleep and 2) well, basically, all there is is 1). <br /><br />Last week, it was nearly 3 a.m. (though sometimes 4) before I fell asleep. I used that time to do things productive like... blog. And Facebook. And research who I want to breed my German Shepherd to. But you can only do that for so long.<br /><br />So after a numbness had thoroughly encased my body and mind last weekend from multiple nights in a row of not sleeping and being awakened early (early!!!) by my niece, I claimed a solid 10.5 hours of sleep for myself by taking two over-the-counter sleeping aids and bunking NOT near my niece who favors the 4' o'clock hour. In the morning. I think it was the most delicious 10.5 hours of sleep I'd ever gotten. I woke up the next morning feeling like, well, like a human being. And also thinking that I might never survive infanthood if I ever become a mother.<br /><br />Since that night, though, we've fallen into the same routine. Me laying awake in bed with my legs pulsating and jumping voluntarily off the bed with muscle spasms, finally falling into a fitful sleep only to be awakened a couple hours later by a fussing little girl.<br /><br />I've talked about this before. Bedtime is always a routine of strategic proportions. I go through a mental check-list:<br /><br />* am I tired?<br />* am I hurting?<br />* am I hurting enough to need over-the-counter pain relievers?<br />* am I tired enough to go to sleep on my own?<br />* so if I don't need pain relievers, am I going to need an over-the-counter sleeping aid? <br />* if I take the pain relievers, then discover I need the sleeping aid, what then?<br /><br />Usually I can use my "ninja-like focus" to compartmentalize the pain and figure that sleep is more important. <br /><br />But last night, I laid on the couch to watch a movie at 10:30 and my eyes were so heavy, I decided that I might actually go to bed at a decent hour. <br /><br />I laid there for about an-hour-and-a-half and then muttered something like, "This is ridiculous" and hand-felt my way to the bathroom where I took half the sleeping aid dose and went back to bed. Sleep eventually came. And shortly after that, the fussing of a particular little girl.<br /><br />This will all even out, I tell myself. Everything is cyclical. My pain right now is much less then it has been and pretty soon, it will all shift. I'll be able to sleep; my muscle and joint pain will increase.<br /><br />Such is life. :)Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-74086089205708666902010-04-18T21:48:00.000-07:002010-04-18T22:01:09.807-07:00UpdateThis probably isn't a fair update since I did just get back from a very long road trip, which always wreaks havoc on my body and makes me think that I am, in fact, 80 years old. Because, if you were to ask my back, hips, knees and elbows, they would say, "yes, we are 80." <br /><br />But we're not.<br /><br />So hopefully in the next few days, my joints, muscles and I will even out and return to our pre-road-trip state, which has been fairly well. <br /><br />My biggest nemesis right now is sleep, or the lack thereof. Oh, and my ears ringing so loud I have to close my eyes and wince till it stops. They've also been super sensitive to sound lately. Take, for example, the new Sun chips biodegradable bag. That's enough to send me through the roof. <br /><br />My life with Lyme is good.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-19569498859619279222010-02-24T22:12:00.000-08:002010-02-24T22:26:57.676-08:00Take what's yours, leave what's mineI don't like giving my Lyme disease more of a platform then it already has in my life. <br /><br />But it's not going to keep me silent either. <br /><br />I'll be honest - living life with this disease sucks sometimes but my life is wonderful. One of my personal philosophies is that everything happens for a reason and while I would like to not be inhibited by this bacteria, my body <em>is</em> host to it and therefore I will live with it, learn about it, combat it, but live my wonderful life.<br /><br />Today I fought through intense nausea and dizziness to make a nice dinner for my family. Sure, I had to lean heavily against the counter at times, take a break while mixing cookie dough and move a little slower. <em>But I wasn't going to let it steal that moment from me.</em><br /><br />That's a part of me it cannot have. <br /><br />Yes, it can take my breath at times. <br />Yes, it can redirect my attention from doing the dishes to sitting on the couch for a minute.<br />Yes, it slows me midstep. <br /><br />But I keep breathing. I keep walking.<br /><br /><em>There are only so many things I'm willing to let it have.</em><br /><em></em><br />I have to know that I have a choice. <br /><br />Yes, there are afternoons it puts me in bed.<br />Yes, it has hidden a few memories from my mental view.<br /><br />But I won't give it the satisfaction of halting me. It can't have me.<br /><br />I will always fight this thing and its level of control over my life.<br /><br />I'm not willing to roll over and surrender to it just yet.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-21006240606236279132010-02-24T16:53:00.000-08:002010-02-24T17:04:51.353-08:00It's been a long time....I couldn't really believe how long it's been since I've blogged here! I have been writing about my health but on my other <a href="http://lifeismyroadmap.blogspot.com/">blog</a> where I document my daily day-to-day musings. I took the time this afternoon to copy some of my health related blogs over here.<br /><br />I don't like giving this disease more of a platform then it already has in my life; I think that's why I have a hard time blogging here. It's like acknowledging that it does have a place in my existence when I spend so much time concentrating on the blessed parts of my life. (more on that coming later!)<br /><br />But I was re-reading over my old posts here and felt really glad that I'd started documenting my symptoms and my treatment. It was helping me remember. And maybe one day it will help other people.<br /><br />The past couple weeks have been rough in the Lyme realm of my life. I've had this persistent head pain on the left side of my skull, which, turns out, I was battling in August too but had forgotten. It's a pain that centers around my temple and then spreads into my teeth and jaw and eye. It hurts so bad. I've had a reprieve from it the past couple days but this morning while I was talking to my mom at the breakfast table, it HIT me but this time on the right side.<br /><br />How can I go from feeling perfectly fine to holding my head in pain? It just doesn't make sense. And if it doesn't make sense to me, how can I explain it to other people?<br /><br />I can't remember anything it seems like. I have to ask questions moments after I've spoken. "Did you say that?" "Did I say......?" <br /><br />Sleeplessness remains an issue although I have to say the past three nights I've slept. And woke up with my covers perfectly over me the way I'd put them the night before. Usually it looks like someone's been massacred in my bed in the mornings. I've tried not to lay on my stomach as three times now, a piercing pain has raked up and down my back, making me cry out aloud. It's those random moments of <em>hurt</em> that catch me off guard.<br /><br />The evening nausea is back although today it got an early start. By noon I couldn't stand or walk without intense nausea. It eventually passed.<br /><br />Two days ago I was making lasagna and it exhausted me. I was laying the noodles out in the pan and the pain in my shoulders was so intense. I had to take a break today while stirring sugar cookie dough.<br /><br />I did find a breakthrough in taking my supplements! I've been buying Yoplait smoothie mixes in the frozen section in Wal-Mart; you just have to add milk so it's quick and easy! I make one every morning and break open all my supplements and pour them in. I'm even able to break up my allergy and thyroid pills and put them in too. This was huge for me since pill fatigue is why, in the past, I've quit taking my medication and supplements. Doing it this way, I only have to actually swallow five pills. I was so pumped! <br /><br />Life is good, you know. Life with Lyme is good.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-43843446350421261412010-02-24T16:52:00.000-08:002010-02-24T16:53:19.101-08:00Blogged January 20, 2010I don't feel good.<br /><br />A lot of people, including me, were worried about how I would do with the physical work here at the ranch. I've surprised myself, really, with the amount I've been able to do while still feeling good to okay.<br /><br />I remember reading an article saying that even though patients with Lyme Disease feel so sluggish and can hardly find the energy to walk across the room, it is essential to their health to exercise and keep their muscles and joints moving. I think that's why I've been able to keep up with just a few limitations.<br /><br />I still have persistent symptoms.<br /><br />Things like inability to sleep without medical aid, nights where my legs are bouncing off the bed in involuntary muscle spasms, and medium brain fog. But starting last night and through today my back, left shoulder, and right hip have just been aching. Deep, bone, tissue ache. It kept me from sleeping last night. How can you get comfortable when your left shoulder and right hip keep you from laying comfortably in any position? It was definitely a night for my heating pad, which I do love.<br /><br />Today the ache has extended into the right side of my neck, my right ear, my left temple.<br /><br />I hope, I really hope that this only lasts for a day and that tomorrow these migrating symptoms will have migrated themselves gone.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-79262770958229237352010-02-24T16:45:00.000-08:002010-02-24T16:52:06.625-08:00Blogged November 12, 2009Tonight I forgot the money value of a dime.<br /><br />That's the embarrassing part of this disease - when it catches me off guard and leaves me scratching my head, thinking that a pile of ten dimes is ten cents while another part of my brain argues with me "something about that doesn't sound right." So I picked up the pile of ten dimes and counted them slowly into my palm, twice. "Wait, one dime is ten cents - ten dimes is a dollar." That makes perfect sense.<br /><br />Tonight I let myself cry a few tears of frustration.<br /><br />A friend visited me; a friend who shares the same disease I do. She's the same friend I was supposed to spend the day with riding horses in the woods yesterday, an old past-time of ours. It was going to be our going-away day before I leave. Instead, we spent the afternoon curled up on her couches watching episodes of NCIS because I was in too much pain to walk much less ride. I fell asleep for 45 minutes too.<br /><br />She cried a few tears with me tonight then we laughed, gossiped a little, ate enchiladas and laughed.<br /><br />Tonight I got dizzy and ran into a couple of doors.<br />Tonight I left my cellphone downstairs but was too tired to go get it.<br />Tonight I got stressed and a fever ensued.<br />Tonight I put supper in the oven and forgot about it. It burned.<br /><br />Not every night is like tonight; don't get the wrong idea.<br />Tonight is just one of those nights.<br /><br />But, for all the bad, I'm thankful for all the good.<br /><br />And choosing now to be blessed because, well, I am.<br /><br />Even on nights like tonight.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-89076698620005711072010-02-24T16:43:00.000-08:002010-02-24T16:45:24.476-08:00Blogged November 11, 2009If I had health insurance, I would be laying in a hospital bed right now, hopefully (blissfully) hooked up to morphine and other delicious narcotics that would have taken the edge off the pain I was in last night and this morning. <br /><br />Instead, I laid in bed, writhing around, rating my pain as an 11 on a scale of one to 10.<br /><br />I couldn't lay in one position for too long for fear of getting stiff but moving hurt too much. I hit a mental wall, where the physical pain was beginning to affect my mind.<br /><br />I started thinking things like, "What if it never stops?", "What if I can never get it under control?" Panic slowly started to seep into my cells.<br /><br />Then I remembered - I'd watched a friend go into labor and manage her pain by using HypnoBabies. While I clearly was not giving birth, I wondered if I could manage my pain by those same techniques.<br /><br />I turned on Pandora Casting Crowns radio, laid it on my pillow, and closed my eyes. I envisioned a "calming center" in my core, a rotating ball where, as I felt wave upon wave of pain, I would put it there and the pain would leave whatever part of my body it was plaguing.<br /><br />At first, it was a struggle just to acknowledge my "calming center". I felt the pain still trying to take over but I consistently resisted the urge to panic until I methodically and calmly placed the pain in the ball.<br /><br />Three hours later, I'd slept peacefully and woke up refreshed and nearly painfree.<br /><br />Now, it is time for me to go lay down and try to sleep, purging my pain.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-80189951147215339712009-08-16T18:42:00.000-07:002009-08-16T18:52:45.920-07:00It's time...againIt's been about 7 weeks since I've been off my meds and what a glorious sun-filled 7 weeks it's been! I have loved just floating on the lake, laying by the pool and floating down rivers and soaking up as many restorative sun rays as possible. <br /><br />But it's time to go back on the meds. And I've got three weeks to do it before I'll take another break when I got to Gulf Shores.<br /><br />One thing this disease has made me do is <em>listen to my body</em>. Right now it's crying for justice, for wellness and I must oblige. <br /><br />My symptoms have become increasingly more neurologic and muscular over the past week. Neurologic symptoms include: intense brain fog, nearly constant ringing ears, cloudy eyes, loss of memory and dizzy spells.<br /><br />Muscle-wise, I want to and have cried. I can't believe I'm the person I am today when I consider what I was capable of doing two years ago. I worked tirelessly on a farm, rode horses every weekend, hauled hay, moved furniture, etc., etc., etc. I worked out, walked miles, kickboxed and on the list goes. <br /><br />This morning I couldn't stand through the whole worship service in church. Holding a 10-pound baby, I had to shift arms to hold her up. Tonight when I poured water for a cup of tea, I had to stop halfway through pouring and switch arms. My weakness is mindblowing. <br /><br />My back hurts almost constantly, my legs feel like jell-o and hurt to the touch. <br /><br />Yes, it's time to make a change.<br /><br />I've been doing research on herbal supplements that are supposed to help inflammation and immune dysfunction. It's overwhelming but I'm determined to plow ahead and try a few things. <br /><br />I've also heard that the FIT FOR LIFE diet guidelines has been helpful to LD patients so I bought the book yesterday and have been reading up on it. I'm not worried at this point about weight loss - my jacked up thyroid and LD has made it pretty clear I won't be losing it anytime soon. My concern lies in the toxins in my body and how much of what I currently eat is feeding the bacteria. I'm going to finish reading the book and prayerfully make some changes that will hopefully help. <br /><br />Cheers to me and doxy tomorrow! I'm resuming on a half-dose to see if the nausea I'd gotten towards the end of my last round will return. If it does, it's time for a new antibiotic. Yay!Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-86538280857744659232009-07-31T17:53:00.000-07:002009-07-31T18:18:43.536-07:00Under Our SkinIt's been a little over a month since I've posted here. Mostly, life has been about the same. <br /><br />About a month ago, I was experiencing increased nausea from the doxy. So I tried to go to a half-dose but then ended up off of it. I've been off of everything for approximately a month. It was probably mostly selfish reasons - I'd gotten to the point where the number of pills I was taking a day were making me gag. And I wanted to be out in the sun. <br /><br />I guess it was like a daily reminder that <em>life with Lyme isn't completely normal.</em><br /><em></em><br />But regardless of the medicine, I'm reminded on a near-daily basis that that is the case.<br /><br /><strong>HEADACHE - </strong>the other day I was driving and the thought crossed my mind "i wonder what it feels like to NOT have a headache." It's not a headache like any other, either. It's only on the left side of my skull, though this isn't exclusive. Sometimes it switches sides. Last week, it was just the top part of my skull, all the way around. I could place my hand on the top of my head and it hurt to the touch. I was sitting on the floor of my friend's house playing with her little girl and all of a sudden it felt like you'd driven a nail through the top of my head. I had to go lay down.<br /><br />But the headache I've had most recently has been on the left side of my skull - shooting pains through my temple in an electric fashion. Sometimes, it takes my breath.<br /><br /><strong>BLURRED VISION - </strong>maybe this is part of the headache - I don't know. But my vision has been blurred, like I'm looking through water.<br /><br /><strong>SLEEPLESSNESS - </strong>basically, I can't sleep. It takes me FOREVER to fall asleep and when I do, I never want to wake up. My alarm goes off and I just want to sleep more. I wake up feeling as exhausted, if not more, as when I went to bed. Really, I think if given the opportunity, I could sleep for at least a day. Part of me wants to try it. The other part feels guilty.<br /><br /><strong>JOINT PAIN - </strong>a couple days last week, I couldn't walk down stairs without intense pain in my left ankle. I had to walk down them sideways to make it. And coming up stairs makes my legs feel like jell-o - so weak. <br /><br /><strong>MEMORY - </strong>my short-term memory and parts of my long-term memory are gone. I can't remember where I put things, what I've told people, what I've done just moments after I've done them. I try to hide it around the people I live with but I think my sister notices these little things.<br /><br /><strong>WEAKNESS IN MY RIGHT HAND - </strong>it's almost as if I've had a stroke. My right hand is so weak. I've dropped at least three cups of liquid today, and numerous other things. It's frustrating. But hopefully this symptom will pass soon.<br /><br /><strong>BRAIN FOG - </strong>enough said.<br /><br />After all the research I've done, I really think that UNDER OUR SKIN is the best. Please visit underourskin.com for information on the film and information on Lyme Disease. Here is an excerpt from a Lyme patient. It's almost like I wrote this, I can identify with everything he's saying. He's talking about dealing with:<br /><br /><em>..."<strong>the memory loss</strong>, <strong>the feeling of drunkenness</strong>, <strong>the disorientation</strong>, <strong>the arthritis in my hands, feet, shoulders, and knees</strong>. <strong>The fatigue</strong>. <strong>The loud ringing in my ears</strong>. <strong>The terrible sleeplessness</strong>. The excruciating discomfort and <strong>pressure in my face and head</strong> from the sound of my own voice as I spoke. <strong>The difficulty and frustration communicating with others, in finding the right words.</strong> The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet..."</em><br /><em>(the highlighted things are things I have on a daily basis but forget to mention sometimes)</em><br /><em></em><br />One of my good friends just got out of the hospital after being there for 8 days. She has Lyme Disease. I'll tell more of her story later....Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-43204685522430587722009-06-15T13:15:00.000-07:002009-06-15T13:31:04.202-07:00Here we go....My mom clarified something for me the other day when I told her my sun experiement. The sun's effect on my skin is actually a chemical reaction between the UV rays and the doxy, which is why it's not really a burn but weird-ness. Who knew?<br /><br />The past couple days, I've felt back at square one. I talked to my friend today who has LD and she was like, "I've been having problems with my temperature control."<br /><br />SO HAVE I!!!!!!!<br /><br />The past two weeks, I've gone from BURNING UP to FREEZING in a matter of minutes. I seriously walk around with a paper plate for fanning and a jacket. And it's not just my internal temperature. I'll feel fine but my skin will either be HOT to the touch or COLD.<br /><br />I've also been in a lot more pain during the last ten days. I can only sit in or lay in a position for so long before my muscles and joints hurt. I've also been experiencing my hands, feet, arms, and legs "going to sleep" after being in a position for just a matter of minutes. <br /><br />Insomnia's back. Without my Tylenol or Excedrin PM, I won't be sleeping, no matter how tired I am.<br /><br />My "brain fog" has also been a lot worse during the past several days. This usually means I have a hard time finding the right word or stuttering over words. It's like trying to think through sludge.<br /><br />Probably the most exhausting thing right now are my episodes of adrenaline rushes. Temporal lobe seizures are connected to LD but I can't self-diagnose these episodes as being that or not. Basically, I get the feeling that I'm running for my life with all the physical manifestations - heart pounding, hands shaking, cold sweat and dizziness. But nothing of significance would have happened to trigger this response. The times it's happened is when I've experienced stress of some sort but nothing to the degree that should dump that much adrenaline into my system. They usually last for several minutes but afterwards, I'm exhausted, really feels like I've just heard the worst news ever, and I need to sleep it off.<br /><br />After this happens, I have to rest.<br /><br />It's been nearly five weeks since I started my medicine regimen. I think it might be time for a Dr. visit and something different.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-27423054700115248482009-06-12T18:39:00.000-07:002009-06-12T18:45:29.200-07:00I spent the last week at senior high camp. I packed all my meds (even my B-12 injections) and took them faithfully every single day. I knew I couldn't afford to miss a day no matter how inconvenient they were.<br /><br />The first couple days, I struggled with fatigue but managed through alright. I couldn't sit in the hardback chairs for more then about 30 minutes. I spent a lot of time either standing up or sitting at the tables when my knees couldn't take any more standing. When my back and neck started hurting from that, I moved to the floor. By that time, the speaking was usually over and we were good.<br /><br />One thing - I got a wonderful massage twice while I was there and decided I needed that more often. It made such a huge difference.<br /><br />I ran a lot on Tuesday in a game of capture of the flag. I've paid for it since then with fatigued legs and muscles. In the mornings, I could barely make it from the dorms to the main building without my legs hurting so bad and being a little winded. <br /><br />My feet bothered me the first few days and then stopped itching. I noticed tonight that both of my ankles are extremely swollen and red - not really sure what's going on there. They also feel weak and jell-o like. Who knows.<br /><br />Vision - blurry. <br />Focus - blurry.<br />Brain - a little foggy.<br /><br />I'm a little worried to see how the next couple of days go. I'm expecting a relapse after expending that much energy over the past five days.<br /><br />However, I don't regret it. It was truly a life changing experience...more on that on the other blog.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com1tag:blogger.com,1999:blog-5003715086159428707.post-43295984802345329402009-06-07T08:19:00.000-07:002009-06-07T08:24:52.673-07:00Allergic reaction to...sun?My experiment from yesterday (allowing myself exposure to the sun in controlled, limited amounts) has transferred over to today.<br /><br />My feet are very, very angry with me.<br /><br />For some odd reason, it's just the tops of both my feet, a space about the size of a dollar bill, that's red, inflamed, feverish, and covered with itchy, microscopically tiny bumps. The hem of my pants brushing against it is irritating.<br /><br />The only part of my foot that's not irritable are the soles and the thong indention where my flipflops protected the skin.<br /><br />Here's a picture for proof:<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVoP0gApK1fdeSZs3mIJsj5p7H1B9rIiphCnaZtguZWGPEwQ9Aih-JG4HdGBDMVjAjMdPVRXmsKQ143-p0O21dkV17lNJEIF1YHCclgH1jmg7kra-3a4GQ2JIlaQvKjr-ErfwNWWhslo/s1600-h/IMG00546.jpg"><img id="BLOGGER_PHOTO_ID_5344606441392307970" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVoP0gApK1fdeSZs3mIJsj5p7H1B9rIiphCnaZtguZWGPEwQ9Aih-JG4HdGBDMVjAjMdPVRXmsKQ143-p0O21dkV17lNJEIF1YHCclgH1jmg7kra-3a4GQ2JIlaQvKjr-ErfwNWWhslo/s400/IMG00546.jpg" border="0" /></a><br />I will admist that I'm enjoying having physical, tangible evidence to post, as if to prove that what I'm dealing with isn't in my head. As those with LD know all too well, 99.9999 percent of the things we deal with cannot be photographed.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-71998187007907271832009-06-06T21:13:00.000-07:002009-06-06T21:33:44.562-07:00Sun exposure and today's Lyme-related weirdness<strong>Sun exposure:</strong><br /><br /><span style="color:#cc0000;">The biggest part of my initial treatment is 400 mg of doxycycline a day - double the amount of a regular recommended dose to treat infection, etc. It's been drilled in my head that with this high dosage, it is imperative for me to stay out of the sun because the drug makes my skin translucent-like and I could suffer from severe burns if I'm over exposed.</span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">I noticed shortly after starting treatment that my hands and arms were being exposed to sunlight while driving. I tried to take care to cover them but still, they were getting sun. A space about a half dollar size between my right pointer and middle finger began peeling and left brand new (white) skin underneath - enough to garner questions about what was wrong. </span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">But I noticed that the controlled and limited amounts of sunlight did not intensely burn. It actually left me with a really dark tan from my fingers to my mid-upper arm. Talk about a farmer's tan!</span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">So today I decided to test my theory with limited amounts of sunshine to the rest of my body. </span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">I spent about 25 minutes of exposed sunlight (broken up into two sessions) on my upper body, lower body and feet. </span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">My feet and ankles are suffering tonight. They are on fire and they ITCH, which I suspect is a type of allergic reaction to the sun. The rest of my body is handling it okay - I just feel very hot, like I've been in the sun for hours on end...on the lake, to make it worse.</span><br /><span style="color:#cc0000;"></span><br /><span style="color:#cc0000;">But perhaps it'll be worth it, if I can figure out the right amount of time to be in the sun. It'll be trial and error and hopefully that error won't land me with bad burns!</span><br /><span style="color:#cc0000;"></span><br /><strong><span style="color:#000000;">Weird-ness:</span></strong><br /><span style="color:#006600;"></span><br /><span style="color:#006600;">I've been on my new treatment for about three weeks and I was feeling really great. Today I had a few setbacks.</span><br /><span style="color:#006600;"></span><br /><span style="color:#006600;">My brain feels very foggy (a.k.a. Lyme-fog) and my eyesight is blurred. I'm having a hard time retracting information from my mind or remembering things. I've gone to say things today but had to rehearse it in my head first and by the time I was ready to say it, the time had already passed and the other person was probably wondering why I didn't respond. </span><br /><span style="color:#006600;"></span><br /><span style="color:#006600;">I had two bouts of excessive adrenaline - I can't really think of any other way to explain it. My heart was racing, my hands shaking, my body felt weak and trembling and I had to think if there had been an adrenaline-causing incident beforehand to cause that reaction. There really hadn't been. These episodes are exhausting.</span><br /><span style="color:#006600;"></span><br /><span style="color:#006600;">I watched my neice today and could not hold her for nearly as long as I should have been able to. She weighs about 18 pounds but I could only hold her for limited amounts of time before I had to lay her down. It's a small thing I noticed just because it serves as a plumb-line for my strength.</span><br /><br /><span style="color:#006600;">Despite all that today, it was really a god day. I got a lot of things accomplished and enjoyed getting them done. </span><br /><strong></strong><br /><strong></strong>Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-61992942590542182222009-06-06T18:30:00.000-07:002009-06-06T18:38:09.031-07:00Re-infection bite<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5DgyyiES-40ghPElWTDukbZxsLxWIjOwC9LtYrVMhcMWjXes9xQxkfDdWZ-vSnbkxJtINpCsCNsY0swRsQV6U0XbVlMSGlVqTl9uFkcSkDiA7aHv6v10_fi0W-_1qdWLFOVLlK26fpoQ/s1600-h/IMG00540.jpg"><img id="BLOGGER_PHOTO_ID_5344392331172425986" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5DgyyiES-40ghPElWTDukbZxsLxWIjOwC9LtYrVMhcMWjXes9xQxkfDdWZ-vSnbkxJtINpCsCNsY0swRsQV6U0XbVlMSGlVqTl9uFkcSkDiA7aHv6v10_fi0W-_1qdWLFOVLlK26fpoQ/s400/IMG00540.jpg" border="0" /></a> After being diagnosed with Lyme Disease and Q-fever in March 2008, I was reinfected with this tick bite about two weeks ago. I'm posting this for my friend's and other people's benefit.<br /><br />This is the classic "bulls-eye rash" surrounding the tick bite - a key indicator that the tick was carrying Lyme Disease. It's necessary to note that 70 percent of the time, the rash will manifest, indicating an LD positive bite. The other 30 percent of the time <em>there is no rash.</em> I cannot remember the specific tick bite that infected me the first time because there was no bulls eye. This time, however, there's no mistaking it.<br /><br />The Kentucky Cabinet for Health and Family Services reported in January 2008 that the "species of ticks that are known to transmit Lyme Disease have not been identified in Kentucky at this time." <br /><br />I beg to differ.<br /><br /><div></div>Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0tag:blogger.com,1999:blog-5003715086159428707.post-70202247912706998472009-06-06T18:21:00.000-07:002009-06-06T18:27:09.204-07:00IntroductionThe purpose of this blog is to document my own personal journey with Lyme Disease and to perhaps one day be a sounding board and support network for other individuals with this disease. <br /><br />As those who carry the disease with them know, it's hard for the people around us, even our closest friends and relatives, to truly understand how this disease effects every aspect of our lives. Hopefuly by providing an outlet for our experiences we can support each other and one day bring about the beauracratic change that must take place in order for us to receive the treatment we need.<br /><br />Please, leave comments, e-mail me - I want to hear from you.Hollyhttp://www.blogger.com/profile/10201674496396914303noreply@blogger.com0