This past year has been quite the rollercoaster ride, and I hate rollercoasters. I have been in treatment for lyme disease for the past 2 years and many days I felt like I simply wasn't going to make it. I thought people thought I was just faking it. My body was not my own and somedays, if it weren't for my children and husband, I wanted to die. I can remember one night, really late, laying in bed and thinking about my life, and the quality of my life and trying to swallow, and it was so hard to swallow! I started to cry and it was one of those uncontrollable cries. I couldn't stop crying. I wondered if I might not be able to breathe through the night- what if my tongue got stuck in my throat because it was so numb? My sweet husband just held me and stroked my hair. We both had a good cry together in the middle of the night. These are the memories I have from this dreaded disease. The following are some lyme notes that I kept when my symptoms were at their worst and manifesting ALS- Lou Gehrigs Disease.
11/18/09 through 12/10/09 Dysphasia, tongue numb, balance
12/12- dysphasia, tongue numb, balance, foot falling asleep, fatigue
12/14- 1000mg IV - after IV felt good for a few hours
12/15- Tired, slow, tongue swallowing issues
12/16- good day, IV in afternoon, Tired but energetic; balance improving
12/17-12/23 IV's daily
12/22- swallowing issues coming back, balance poor, fatigue
12/25- nap 2 hours, balance, tongue tingling, swelling, thick, swallowing issues back
12/27-balance, eyes sore, fatigue, nap, yeasty, swallowing issues
12/28-severe headache,right shoulder pain, fatigue
12/29- arm hand stiffness, balance poor, fatigue
12/30-swallowing slow and numbness bottom/back of tongue , balance, fatigue
12/31- tongue tingling bottom and back, balance poor, legs sore and stiff
This continued until Feb 1 when my balance was restored! No more walking around holding on to things. The following 5 months consisted of IV's 4 days a week along with 5 other oral antibiotics. My last IV was May 19th.
I Hate Lyme Disease, but dare I utter that I am getting better?
This is an incredible list of symptoms. I'm glad your optimism is showing through and you feel like you're getting better. You had me holding my breath as I read.
ReplyDeleteI clicked on your book and went to Cedar Fort. Totally neat book idea. I did a very small coloring/activities book for our local fire department last year. (We have six stations and each booklet had a personalized rendering of their station on the front cover.) When school children tour through the stations the firefighters give the booklets out as a gift, along with a small box of crayons. I don't know who gets a bigger kick out of the little coloring/activities booklet, the children or the firefighters. (They’re really just big kids at heart.)
Welcome to ANWA.
Thank you Debra! Your book sounds very exciting and useful too! When I decided to publish, I never thought it would be a puzzle book! Literature based writing is my passion however, and I hope to dust off some of my manuscripts and get the ball rolling. Looking forward to shaking hands with you and all the ANWA sisters. What a fabulous organization! Best to you!
ReplyDelete