Monday, June 21, 2010

Stress Inducing Shittiness

This 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 there, though, this cloud that is just hovering.

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.

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.

Friday, June 4, 2010

Well, that was interesting

Okay, let's never do that again, okay?

Okay.

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. That was horriffic.

Due to the extreme Herxheimer 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.

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.

Today is a new day and it's a day of celebration.

Tuesday, June 1, 2010

battling and losing sometimes

I don't complain much but some days it feels like I'm desperately losing this battle.

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.

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?

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.

Sunday, May 30, 2010

Sick

Getting sick on top of being sick is something I try to steer clear of. It's like jumping ten steps backward in a matter of minutes.

So when, one by one, family members started having sore throats and I was emotionally stressed I took positive action by reinforcing my weak immune system via supplements and herbs.

Not soon enough, apparently, because here I sit in the recliner sniffling, coughing and with the heating pad laying over my tender knees.

Yes, I'm back to those days of the Comfort of the Heating Pad.

But my philosophy is to live life to its fullest and not let this disease take from me more than what it's entitled.

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 gliding (feverless!)

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.

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.

Tuesday, May 25, 2010

Twiddling

Two 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.

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.

But it really wasn't.

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.

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 incredible ridiculous nausea had me sitting down every five minutes.

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.

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.

Alright, I'm off to try bed again.

Wednesday, May 5, 2010

Altitude

The past three weeks have been rough in the Lyme department.

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.

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.

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.

A reaction, indeed. Ugh.

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.

So tonight I am tired and I'm hoping I can sleep. Hope for me! :)

Wednesday, April 28, 2010

Sleep

One of my biggest struggles with Lyme Disease is not sleeping.

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).

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.

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.

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.

I've talked about this before. Bedtime is always a routine of strategic proportions. I go through a mental check-list:

* am I tired?
* am I hurting?
* am I hurting enough to need over-the-counter pain relievers?
* am I tired enough to go to sleep on my own?
* so if I don't need pain relievers, am I going to need an over-the-counter sleeping aid?
* if I take the pain relievers, then discover I need the sleeping aid, what then?

Usually I can use my "ninja-like focus" to compartmentalize the pain and figure that sleep is more important.

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.

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.

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.

Such is life. :)

Sunday, April 18, 2010

Update

This 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."

But we're not.

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.

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.

My life with Lyme is good.

Wednesday, February 24, 2010

Take what's yours, leave what's mine

I don't like giving my Lyme disease more of a platform then it already has in my life.

But it's not going to keep me silent either.

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 is host to it and therefore I will live with it, learn about it, combat it, but live my wonderful life.

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. But I wasn't going to let it steal that moment from me.

That's a part of me it cannot have.

Yes, it can take my breath at times.
Yes, it can redirect my attention from doing the dishes to sitting on the couch for a minute.
Yes, it slows me midstep.

But I keep breathing. I keep walking.

There are only so many things I'm willing to let it have.

I have to know that I have a choice.

Yes, there are afternoons it puts me in bed.
Yes, it has hidden a few memories from my mental view.

But I won't give it the satisfaction of halting me. It can't have me.

I will always fight this thing and its level of control over my life.

I'm not willing to roll over and surrender to it just yet.

It'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 blog 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.

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!)

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.

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.

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?

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......?"

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 hurt that catch me off guard.

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.

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.

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!

Life is good, you know. Life with Lyme is good.

Blogged January 20, 2010

I don't feel good.

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.

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.

I still have persistent symptoms.

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.

Today the ache has extended into the right side of my neck, my right ear, my left temple.

I hope, I really hope that this only lasts for a day and that tomorrow these migrating symptoms will have migrated themselves gone.

Blogged November 12, 2009

Tonight I forgot the money value of a dime.

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.

Tonight I let myself cry a few tears of frustration.

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.

She cried a few tears with me tonight then we laughed, gossiped a little, ate enchiladas and laughed.

Tonight I got dizzy and ran into a couple of doors.
Tonight I left my cellphone downstairs but was too tired to go get it.
Tonight I got stressed and a fever ensued.
Tonight I put supper in the oven and forgot about it. It burned.

Not every night is like tonight; don't get the wrong idea.
Tonight is just one of those nights.

But, for all the bad, I'm thankful for all the good.

And choosing now to be blessed because, well, I am.

Even on nights like tonight.

Blogged November 11, 2009

If 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.

Instead, I laid in bed, writhing around, rating my pain as an 11 on a scale of one to 10.

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.

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.

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.

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.

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.

Three hours later, I'd slept peacefully and woke up refreshed and nearly painfree.

Now, it is time for me to go lay down and try to sleep, purging my pain.