personal journey with lyme disease

Journal Entry from 3/23/09 January 11, 2012

Filed under: Uncategorized — iammorethanlyme @ 1:26 pm

This is verbatim from a journal I was keeping to try and track my meds, questions for doctor’s appt., etc. and apparently this day I was more in the mood to question the use of journaling as writing was difficult to begin with – let’s hope I can read what I wrote:

Journal can be their own worst enemies if you allow it.  I’m supposed to track how I feel physically, emotionally, etc.  It’s so hard to due to changes in meds, changes insleep, stopping meds I’ve been on for a long time; Buspar and Trazadone.  My periods are all over the place.

I try and do what the docs tell me – be kind to yourself, let yourself heal, it’s OK to be angry.  Lately, I just feel empty.  I believe I had a Herx to the Biaxin I started 2/23/09.  It lasted the whole 2nd week of meds – hot, cold, headaches, pain.  But now I’m on week 4 of Biaxin and Mepron and I still can’t explain how lousy I feel.  Dave says it’s the meds kicking the Lyme – I hope so because I’m tired of being “here” but not in the moment.  Maybe if the tears would come more easily there would be an outlet.  Maybe my body is just at war with itself right now, but even though I “look” better to everyone I am hurting so badly!  It’s been 4 years!  Meg’s entire high school years.  Maybe if I’s had the strength to push her harder she’d be at her potential.  Amy’s been driving Meg and Katey around as neither has their license – Katey doesn’t want one – Meg just doesn’t want to go through the effort.

The Good News is that it’s been almost a year since Dr. Levitan discovered the Lyme and in May it will be a year since my first visit to Dr. Phillips {LLMD}.  He said probably 18 months of treatment but I’ve been pushing him so part of feeling this lousy is my own doing.

Everyone has been so understanding and helpful and I HATE it!  Dave is always in the car driving me to some appt.  He never complains and just seems relieved to finally know what I have and that I will get better.  Of course, I worry that he is not taking care of himself and he’ll have a heart attack as soon as I’m better.  And then I wonder what does better mean for me: 70%, 80%, 100%, driving, working, relief of all the neuro and physical symptoms and pain?

I know that I have Donna to hang with every Friday and I know that I have plenty of friends that would love to visit, but I’m not up for it – it takes way more effort than anyone realizes.  Donna’s safe as are Dave and the girls though Katey, who has been away at school, seems to “get it” more than Amy and Meg, but Katey hasn’t seen what they’ve seen over the past few years!

That was the end of that entry.  It is now January 11, 2012 – almost 3 years later and I am on more meds now – so I guess I wasn’t one of those 18 month patients.  Dr. Phillips did say I was one of the sickest patients he had seen in his 13 years of treating Lyme.  He also told me 100% was not realistic as Late Stage Lyme patients have relapses and the process of treating all the possible co-infections takes a long time.  He is on leave right now and I miss him terribly, but I was referred to a neurologist who specializes in Lyme only an hour from here and she has been wonderful.  I will end by saying I believe I might be between 75-80% improved as my walker is now a thing of the past and I hope it stays that way.  I’ll keep fighting everyday as the thought of going for a run one day would be a dream come true!


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