Dear Fans, Friends, Fiends, Foes and Family,
Well, the diagnosis is in and it is Lyme Disease. The good thing is that now we know what we are fighting. It is something tangible, to fight. A known enemy. Another good thing (I use the term “good thing” a bit tongue-in-cheek because this hasn’t been good, but it is all relative to the alternatives) is that it is treatable. The doctor says that she doesn’t think the disease in the chronic stage that some people deal with, as in the video, but will still require a hard-hitting, long-term regimen of antibiotics, but so far they think this can be taken care of with oral medicine and not require a PICC line or peripherally inserted central catheter. The thing that struck me as slightly humorous about antibiotics, to be genteel about it, is that you need to offset some of their effects with Pro-Biotics.
Earlier in the year my daughter was asked by her doctor to make a list of things that happened to her. She just typed out things as they happened and did not try to make it pretty or correct. I have her permission to post her raw notes here, to help educate people about what she has been going through. This doesn’t tell of the indignities that she has suffered at the hands of physicians and neurologists who have told her every kind of thing, from she’s working too hard to she needs a boyfriend to basically she is a nut-job, this is just a telling of one week or so.
A couple of additional items not listed below is that since the first of the year her right sided weakness has gotten so bad that she can no longer drive. She can’t put enough pressure on the brake pedal to make it work and she has been in and out of the hospital a couple of times. Here are her notes, please, again, remember that these are just raw notes, off-the-cuff and not an example of her usual spelling and writing.
Woke up at 9:20, was up to go to the bathroom 3 times. Drank too much tea. Pain is an 8. If it can hurt, it hurt.
I could cry, lost my balance 3 times getting out of bed. Drank coffee on the couch with my cat. Paid bills.
10:00 weight 139 got dressed. near fall. made my bed, brushed my hair
10:30 took 4 ibu and 2 tyl just want to go back to bed
11:00 coffee & a bar for beakfast. well i cut coupons. lost my balance. pain is now at a 6 still, in pain but dont feel like crying
12:00 drove dad to work. read email. almost fell in the bathroom. my pain is at a 4, i feel achy
12:30 loaded the dish washer, lost balance once
1:30grocery list, more coupons, figured out dinner. lost balance twice. ate hot pocket for lunch.
2:00 took my gabibetion, cleaned off table, back to a 6 pain level
2:45 drove mom to work, waiting for ot @ 4:45
home from ot. i am tired. i dont even know where to rate my pain. dogs got in the trash and all i want to do about it is cry. 6:00 tried to clean up trash, got stuck on the floor had a very hard time geting up. had to pick up a prescription then pick up mom. took ibu and tyl at 5:00. not sure if it’s done anything. i am probably in too much pain to drive.
6:30 picked up my mom and picked up my ID from ashley.
8:20 dropped off prescription. did a little shopping in a wheelchair with mom, picked up meds and drove to get dad. took a tramadol pain leavel 7ish
10:30 got home put away grocerys took my meds took ibu and tyl went to bed
woke up at 10:30 due to barking dogs.
11:00 took ibu and tyl. took dad to work. went grocery shopping.
12:30 got home, put away groceries, made chicken nuuggets for lunch. pain is some were bettween a 4&5.
i was half asleep half awake until 1:00am
i was itchy from tramadol got up and took some benadryl.
fell asleep about 2:00 when i got up pain was a 2. got a cup of coffee, took a shower, prayed, got dressed. pain now at a 6
2:00 took gabipention, filled out leap, did mom hair.
3:00 dropped mom off at work, picked up the kids. pain is a 5
4:00 cleaned off the counters read comics
5:30 made dinner, read bible, started to clean off the table. ate dinner, took ibu and tyl at 5. pain at a 6. played on tablet for 20 mins
6:30 picked up mom from work
7:00 took tramadol the ibu annd tyl did nothing. i dont know how to rate this pain, my whole right side hurts so bad i dont want to use it. my head, eye, neck, shoulder, back, arm, hip, leg, it all hurts. tremor started to act up. the rest of my body hurts aslo just not quite so bad. it hurts to lay down. it hurts to sit. it hurts to stand.
8:30 ice hurt, heat did not help. considered going to the ER but they never do anything, especially on a friday night. face is startinng to itch and am extremely thirsty and very sensitive to touch. 9:30 read comics, going to bed, took benadryl.
went to sleep about 11:00 pm. went to the bathroom twice.
5:00am woke up in a lot of pain. took ibu and tyl. read comics, went back to sleep around 6:30.
9:00am woke up but went back to sleep until 10:30.
weight 138.8 had coffee and cinnamon toast crunch for breakfast.
11:00am took ibu and tyl, pain is at a 7. made my bed.
12:00pm finally got dressed. I sill hurt. all I want to do is lay down. straightened my room.
12:30pm made quesadilla for lunch, laid on my bed and read.
1:30 took tramadol. tried to get something done but I hurt too much. i get up with doing something in mind and end up leaning against something staring into outer space until I give up and lay back down. I don’t want to knit or crochet, my hands hurt.
7:30 took ibu and tyl
8:00 took tramadol my joints hurt so bad
went to prayer ate chicken taco for dinner
lost my balance 5 times today
I have done nothing today. took Benadryl and melatonin.
how many time is it ok to lose my balance? i lose my balance at very least 3 time a day, some days it’s more then i can count. i can’t pick up something in the middle of the floor, i cant stand back up without losing my balance. i dont do u turns. i dont know if my balance has gotten any better or if i have learned to pay attention to my balance. my parants dont want me to go anywhere by myself because of my balance. the PTY told me that the more i practiced walking the better my balance would get. i dont think that it has.
i have a bad tremor 3 to 4 days a week some times its just my right arm, others it my right leg, sometimes it feels like my whole right side including my head or neck and the past couple weeks my left arm
7:45am dad woke me up to take him to work. i was up 3 times last night. i took ibu and tyl around 3am. it took me a few mins to get out of bed. pain at an 8. had a hard time getting to my clothes so just put on what i could reach. got a cup of coffee took a second cup of coffee and fruit snack while he drove to work. had to go to sams for 2 things
10:30am cleaned off a counter in the kitchen. i have lost my balance too many times to count already today. pain is now at a 4
12:30pm talked on the phone with my fried for 10 mins. talked with mom for half an hour. made lunch. ready for a nap.
2:20pm had a cup of coffee, took mom to her office. not feeling too bad. pain is at a 3.
4:00pm took mom to work. got a flat tire, called my brother-in-law to change it. had to move the tire to get the jack out. was just going to get it in place and needed help up. pain at a 7.
5:50pm went to the yarn store where my friend works. I figured if I had an hour to wait to pickup everyone from work I could be distracted by a friend until I could take some meds. I’m not sure If I can focus enough to drive when I take tramadol but I may have been in too much pain to drive. anyways, picked up the kids at 5:30, then mom, then dad.
6:45pm took tramadol changed my clothes and rode with a friend to variety night at church. really don’t know why I went. tremor in my arm has been going all day, then at the church my leg started. I felt really zoned out and became over-stimulated by the games. got home, took a shower to relax and calm down and am going to play on the computer for awhile.