I'm finally getting over this upper respiratory infection! I had a really hard night last night though. The pain was worse than normal. My joints hurt so bad. Right now the worst pain is in my knees and elbows. Last night nothing was helping the pain. I took my pain medicine which usually relieves the pain some. It didn't do anything last night. I read until about 2am then it went downhill from there. I was hurting so much and just wanted to go to sleep. At 4:45 I took another bath to help the pain. It was the fourth bath that night. I finally fell asleep at 5:30 but still woke up a lot. It was such a long night.
Right now I'm doing an IV and later I'm doing a homeopathic pain medicine through my PICC line called an arthritis push.
These are some funny things about everyday life with Lyme. You have to learn to laugh at all the silly things that come along with being sick.
- At an appointment with your LLMD the nurse has asked why you are "all dressed up" when you wore sweat pants without holes in them instead of PJs to your appointment.
- Showering is a two hour process with a three hour recovery period.
-Some days are "shower-optional".
-The happiest day of your life was the one when you were diagnosed with Lyme.
-When you were diagnosed with Lyme you cried, shouted, or hugged your LLMD (which was slightly awkward for both of you).
-They know you by name at your local ER.
-You have more pills in your closet than a drug dealer.
-Your pain management specialist has informed you that your regiment of painkillers should be enough to tranquilize a horse, but they have little to no effect on you.
-You can't sleep even though you're always exhausted. See above for horse tranquilizer dilemma.
- The list of foods you CAN'T eat is longer than the list of foods you can.
-Your BMI is so low that you legally couldn't be a runway model in approximately ten countries.
-You have mysterious bruises, despite spending the majority of your day in bed.
-You (or your mom, dad, or caretaker) has come thisclose to having a fist-fight with a nurse or doctor who wasn't being sensitive enough to your needs.
- You cry if you have to go away for the night and realize when you get there that you forgot to pack the Glad Press 'n Seal wrap. (for showering with the PICC line)
-You have a PICC line, and were initially paranoid about keeping it sterile when the doctor who put it in told you a bunch of horror stories about sepsis, but now you don't even usually remember to cover in in public.
-You are totally un-phased by people staring at you in public. You suspect it might be due to your wheelchair, PICC line, Michael Jackson style surgical mask or something, but who really knows?
-You laugh when you and another Lyme friend simultaneously have to go to the ER, and swap amusing stories when you get back.
-Your favorite day of the week is "dressing change day" and you (politely) demand that your nurse scratch your arm with gauze for as long as possible.
-You can't watch commercials because of the sudden changes in light and noise, and you think that sort of thing should probably be illegal.
- Your friends no longer think its odd for you to randomly burst out laughing and/or sobbing.
-You've also devised tricks to scam your insurance company to pay for rejected medications.
-Your LLMD is programmed in your phone and under recent calls all too often.
- Your nurse gives you her personal cell number, and calls you just to chit chat.
-You look forward to having wheel chair races with the next person up to the challenge!
-Your sister goes to get her picture taken and someone says “say cheese” but she says “ LYME DISEASE!” instead.
- You could probably draw your own blood. And instruct the nurses which vein to use.
-When you can read your blood work better than your PCP, nurses, and most medical students.
-Going to the doctor is considered an outing.
-You are able to diagnose other Lyme patients before 20 specialists can.
Add LOTS more, everyone! Every case of Lyme is different, some are more severe than others, but I hope we can all have a giggle about its quirks while we're working to get well. We can beat this! Hope this puts a smile on your face!"
"He will once again fill your mouth with laughter
and your lips with shouts of joy." Job 8:21