Monday, September 29, 2008

Tired

My body is still very run down. I've been sleeping 16-18 hours per day, and not really able to do very much during my awake time. Even simple daily activities such as getting to the bathroom or changing my clothes leave me weak and winded.

Friday, September 26, 2008

The day after

My day started at 5am. By about 8:30am I was ready to go back to bed.....tired, achy and very weak. I rested for a while but couldn't sleep....finally got up around noon. Since then I've been looking through old photos and browsing the web for a USB driver for my dad's camcorder. I'm very worn out and mentally dopey (what I like to call "stupid-tired") but too uncomfortable to sleep just yet. Every joint in my hands and arms ache.....my leg muscle are restless and jumpy. I might take some extra Valerian root tonight to help me relax.

Thursday, September 25, 2008

A bad day

I made a mistake yesterday, and overestimated the amount of activity my body could endure. I had taken the bus to a nearby appointment. On my way home I decided to walk across the street to the grocery store for some rice milk before walking the 2 1/2 blocks back to the house. I should have gone straight home after stepping off that bus..... I was already exhausted and out of my mind.......
I wandered through the store in a daze...my steps short and uneven. I was looking for something, I just couldn't remember what. I finally stumbled upon 'it' while wandering down the cereal aisle.....rice milk! that's what I had come here for. I pulled a half gallon off the shelf and cradled it in both arms as I shuffled my way to the register. As I reached the end of the aisle, my exhausted and delirious mind decided I should buy some turkey too, so off I staggered - like a zombie - to the deli section. The trip back to the register is a blank. I have no idea how I got there. Perhaps the chill from the hunk of frozen turkey, which by then was burning the fingers off my left hand had kept me lucid enough to find my way back. I paid for my things and headed out the front doors....I needed to rest so I sat on some crates next to the door that had been left as part of a display. I was so tired...my whole body ached. I pulled my cell phone from my purse and dialed my friend Steve....as it rang I began to cry. I sobbed into his ear as he listened and calmly reassured me that everything would be alright. After a few moments I tried to stand again to see if I could make it home.....still on the phone I inched my way across the parking lot. About half way to the street, every cell in my body suddenly screamed in unison: "SIT!!" Like a well trained dog I immediately parked my butt on the asphalt and wept - defeated - into the receiver. I just could not walk one more step. I felt utterly helpless.....I bawled to Steve "I can't do this...." His voice of reason broke through the fog in my brain...."Can you call someone for a ride?" I hadn't thought of that...I hadn't thought of anything really, my brain was such a murky, confused mess. I hung up, blew my nose, and tried my best to sound calm and collected as I dialed my dad's cell. Luckily he was just a few blocks away and came by several minutes later to pick me up. I slowly hoisted myself into the truck and fought hard to hold back tears on the ride home. Once there, I slid out of the passenger door onto my feet and stumbled to the porch, but that first step was so hard....I gripped the wrought iron post to help my weakened legs make it up the 6 inch step. As I got up there and set both feet on the concrete I could no longer keep my composure...I dissolved into a puddle of tears. My dad was right there and wrapped his arms around me....deep sobs racked my body as my tears drenched his shoulder and blubbered "I hate this disease....I just want my life back!" He helped me to bed where I stayed for several hours, crying on and off. I called Steve back to let him know I was home safe and talked with him for a bit between sobs. After our conversation ended, I kept dialing friends and stayed on the phone til my battery was almost dead...I didn't want to be 'alone'. Sometime that afternoon, exhausted from crying and talking, I fell dead asleep.
I am still very weak today and moving is still difficult. I have pain in every joint from the waist down. The good news is that I'm not crying anymore and am still holding onto hope of having a semi-normal life one day. That's all for now. Ciao!

Wednesday, September 24, 2008

One step forward, two steps back

The semi-human feeling I had yesterday morning didn't last long....maybe 2-3 hours before I returned to a state of woozy, weak cotton-headed misery. I spent the afternoon resting and conked out at 6pm. I'll be glad when this is over. Right now I'm trying very hard to be patient with my body and just do what I can each day and not worry about the rest. One day I'll finish painting the walls, building my table and sewing my curtains, but right now I have a more important task at hand...taking care of me.

Tuesday, September 23, 2008

A little better

Good news today. I slept for 14 hours and actually woke up in the 'morning'...hehe. 8am! yay!
I'm walking a little better and don't feel so woozy....I started feeling slightly better yesterday after I had some liver. So I had some again for breakfast this morning and I'm feeling semi-human. My brain also seems to be waking up a bit.....not so much cotton in there ;-) I'm going to start on some long overdue paperwork and may write some more later. Ciao!

Sunday, September 21, 2008

Hangin' in

I've been feeling steadily worse since writing my last post. My time is spent taking meds and lying in bed sleeping on and off. Tonight I got up to use the bathroom and was shaky and out of breath when I got back to bed. Again, I expected this, so I'm just riding it out......hopefully this is the worst of it and I'll start feeling better soon. I doubt I'll return to posting daily for a while yet, but will try to post as often as my health allows.

Wednesday, September 17, 2008

Worse

I am worse today than I have been in a long time. Very weak and easily exhausted. I spent the entire day in bed asleep....woke for 'breakfast' at around 5pm, then went back to bed, as the activity of nuking some scrambled eggs and eating them wore me out. After two more hours in bed, I got up.... I just couldn't stay there any longer without going nuts. I still feel pretty rotten and am having trouble keeping my balance - I weave and bump into walls etc - but my mind needs input/activity. Even if it's something as simple as sitting here writing this blog...I have to DO something.

Tuesday, September 16, 2008

I hate this disease

I am very weak today. My hands are a bit swollen and very sore with achy joints and tender fingertips. The pressure/achiness in my chest has worsened and I've begun to cough again when taking deep breaths. I'm going to focus on taking my meds and drinking plenty of water today, and try not to worry about anything else.
In other news, my cell phone is out of service. My dad said he would pay the bill, but I think he forgot. I don't want to remind him, as I really hate to ask for anything. But my phone is my connection to the world outside this house, so I may just break down and do it.

Monday, September 15, 2008

Weaker

The pain/pressure in my chest has let up a bit, but is still there. I called the allergist my primary doctor referred me to and left a message....I hope to hear back from them soon to schedule an appointment. It's often difficult to decipher which symptoms are Lyme related and which aren't. So, when a new symptom occurs, I like to have it checked out in case it's a separate issue.
The last few days I've felt weak and drained and it's been getting steadily worse. My muscles burn even when making small movements, or holding a position for more than a few seconds. I often have to stop and catch my breath after typing, pouring water, writing etc...Last night I was doing a crossword puzzle while lying in bed, and had to stop after each word I filled in to catch my breath and wait for my arm and fingers to stop burning. It seems to happen most when using my upper body muscles, so I'm still able to walk when I need to.
Today my joints have begun to ache again, this time in my hands and arms, and I'm having shakes/tremors in my upper body. I've had them on and off for years. My arms curl toward my torso, my shoulders scrunch up and I twitch as my head kind of pulls to one side.....fun. They only last a few seconds though, and I'm not feeling any additional pain as a result, so I'm glad for that.

Sunday, September 14, 2008

Under our skin

I saw a wonderful documentary on Saturday called "Under our skin". It was terrifying, heart wrenching and very well done....I was in tears at several points throughout the film....cussing at others. It chronicled the lives of Lyme sufferers and their pain, frustration, anger and despair at not being able to find adequate treatment. It was a frightening look into our health care system, and a must-see for anyone who has the disease, as well as their friends, family and physicians.

My nephew came to visit today. We goofed around and chatted a bit while I sat in my office chair, which he decided to spin around with me still in it.....I was happy to play with him and tucked up my feet to spin in the chair as he giggled. After about 3 or 4 revolutions I began to feel dizzy....my equilibrium suddenly left me and I fell off the chair onto the floor. I tried to stand up but couldn't. He laid down next to me, his nose to mine and stroked my hair as I took deep breaths and waited for the room to stop spinning. I cursed in my head and wished that he didn't have to see me like that....he's only 8 years old. As I began to regain my balance I was able to pull myself up onto the bed. He helped me as much as his little arms would let him, and began holding up fingers in front of my eyes, asking how many I saw......" one.....four....two.....ten......" then began signing letters...."g.....r.....c..." and picking up objects from around the room...."cow....glue.....water..." to show me to "make sure your eyes are ok"....the next thing he held up was a roll of toilet paper I keep beside my desk.....I wanted to make him giggle so I said "cucumber". He gave me a very stern "I'm serious" look which didn't go away until I correctly identified the object. He's such a sweet little guy, I hate that he saw me that way, and I think it scared him a little. He climbed up on the bed with me and kept me company while I rested, laying his head on my tummy and doing silly things to make me laugh. I love him so much. OK, I'm gonna sign off before I start to cry.

Thursday, September 11, 2008

Allergies?

I'm Still feeling pressure and a bit of pain in my chest when I breathe deep, as well as random fits of sneezing. On Tuesday I chose a primary care doctor on my health plan, as I didn't have one selected and gave her office a call. She was able to get me an appointment Wednesday morning. She had me take a breathing test and did a thorough exam. The test came back normal and other than blocked sinues, she could find nothing wrong, so she referred me to an allergist to see if the high mold content in the house could be causing the chest issues and sneezing fits. I should receive the referral in the mail next week and will set up an appointment as soon as possible. In the meantime I will contact the health department for information on the different types of mold in the area and how to get rid of them.

Tuesday, September 9, 2008

Monday outing

I spent monday in the hospital with chest pressure/discomfort when inhaling and fluctuating heart rate. Fun, fun, fun!
After 12 hours of blood-sucking (9 vials), x-rays and monitoring, they ruled out pneumonia, and heart defect - whew! Since my heart itself is ok, I'm guessing the fluctuating rate is due to the Lyme disease, as the bacteria often short-circuit signals to the major organs. As for the chest pressure/aching, they said one possibility could be inflammtion of the area around where the ribs connect in front......that can be treated with ibuprofen. they also recommended that I follow up with a local clinic just to be safe
I got home yesterday at 5pm, and after inhaling a sandwich I grabbed from a local sub shop on the way home, I hit the pillow hard and slept til 8 o'clock this morning. I feel a little better after having had some good sleep, but the sneezing is back..eek! I'll try taking a hot shower soon and see if that doesn't help. Later!

Sunday, September 7, 2008

It snot funny

I woke Saturday morning with a stuffy nose. I didn't think much of it until that afternoon when I suddenly began sneezing my brains out in a fit that left my head spinning and about half a roll of used TP wadded up in the trash bin. Since then I've produced enough snot to drown at least one person. I spent the night boiling water for my steam tent and cradling my roll of TP as if it were my most prized possession. Finally, at about 5am I was able to fall asleep propped up in a sitting position, TP crammed into both nostrils. Great mental image, eh?
I woke at about 11 this morning and picked right back up where I had left off. Seemed like everything I did started a sneezing fit...talking, eating, moving.... tons of fun. I decided to take a hot shower about an hour and a half ago, and have been sneeze-free since. Yay!

Friday, September 5, 2008

One day at a time

The last two days I've woken up with a heavy feeling in my upper chest.....as though there is a weight lying on it. It feels less heavy once I get up and move around, but never really goes away. Also, if I laugh hard or speak louder than usual, I feel a sort of itch/tickle in my chest and start to cough. I'm wondering if it could be from the high mold content in the house....it's everywhere....doors, cabinets, refrigerator...pretty much every porous surface has it. We have swamp cooling, and it gets really humid and sticky inside the house. I'm going to email my doctor about it and check into getting a dehumidifier for my bedroom to prevent the mold from spreading in there.
Also, while the severe joint pain in my extremities has eased up, the dull ache remains. My hands especially are still very stiff and sore, and often swollen when I wake up. The pain is not too bad, just enough to be uncomfortable and interfere with pretty much anything that requires more than mild dexterity, such as typing and writing.

Wednesday, September 3, 2008

Better today


My legs and back feel a bit better today. Just a slight dull ache. I'm drinking lots of water in hopes that it will keep the severe pain at bay.
An odd thing happened this morning..... I was sitting at my computer and stood up to head to the kitchen. As I put my right foot on the floor, a stabbing pain shot up the back of my heel. I'm glad no one was around to hear the string of cuss words that leapt from my mouth at that moment. I managed to get myself to the tub, soaked my foot in hot water, then put some menthol creme on it and covered it with a thick sock. Most of the pain is gone now ....just a bit of tenderness left and I'm able to walk on it carefully. I still have no idea what caused it.
In other news, I found a cute little spider out by the laundry room the other night.....I would not have noticed it if it weren't for the sound of my baby sister screaming like she was being killed...hehe. I went out to see what all the fuss was about and noticed the dime-sized spider clinging to the wall. As I leaned in for a closer look, it launched it's 8-legged self off the wall and swung like a mini tarzan right at my face, at which point I began screaming like a sissy girl - arms flailing. After I regained my composure and my friend - who was on the phone with me at the time - stopped laughing hysterically, I put the little guy (I'm assuming it's a dude spider) in an empty cookie bucket and brought him inside for closer inspection. I browsed the internet in an attempt to identify him, but had no luck so I shot a few photos of the critter and sent them to the bugman (whatsthatbug.com) for identification before releasing him back in the the 'wild' near the laundry room. :-)
Scroll down to see the spidey :)

Tuesday, September 2, 2008

Pain

Last night I experienced what felt like an extreme case of arthritis pain - common for Lyme Disease sufferers - which ran from my lower back to my thighs, and then progessed to my knees and shins. The pain was excruciating and had me in tears. It felt as though several ice picks had been jabbed into my spine. Attempts to stand or walk made the pain even worse. I contacted a friend and he stayed on the phone with me while I cried through the worst of it, and helped to distract me as I waited for the quart of water I drank to kick in - the only thing that helps relieve the pain. It had lessened to a dull ache by about 3:30 am and I was able to get some sleep.
I woke up about 5am and my heart rate was 104....a bit high for someone lying still in bed. I'll continue to monitor it over the next few days and contact my doctor if it continues, and head to the ER if it gets dangerously high.

Monday, September 1, 2008

Sleeeepy

I've been feeling very weak the last few days.....all I want to do is sleep....constantly feel like I've just run a marathon....sore muscles, fatigue etc. I think it is a reaction to increasing my meds on friday and again last night. I up the dose a tiny bit every other day. I may stay at this dosage for a few more days to give my body a chance to adjust before increasing it again.
The intense exhaustion has taken a toll on my emotions. I broke down last night and cried for about an hour.....was one of those "I feel yucky and wanna be held" moments. Luckily I had a friend on the phone to talk me through it.
Well, I'm off to prep my dinner meds. Ciao for now! :-)