ADVANCED TOPICS IN LYME DISEASE
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ILADS Evidence-based Lyme Treatment Guidelines

by: JessRN75

Friday I received a phone call from my doctor.  She told me I can no longer drive.  Great.  I knew this was coming, but it is very hard to hear.  With the medications still being tapered up and feeling groggy all the time, it is not safe, especially with my children in the car.  I am only three weeks into the “stabilizing phase,” which means I have at least 6 weeks of not being able to drive, probably longer.  I have to depend on people to take me places or bring me things.  And the “going places” is getting more and more difficult also.  Two years ago, one of the first symptoms I had was my hips “locking up.”  It was very painful and I would immediately sit where I was standing.  This symptom is occurring again.  I cannot stand long enough to make a simple snack, such as peanut butter toast.  I am unable to stand long enough to take a shower.  I take baths in the kids tub because my tub has high sides and I do not think I can get out of it.  Tom has to help me out, which means he has to be home when I take a bath. Yesterday he suggested we get a shower chair.  I laughed it off, but in reality, I will probably need one in the near future.  I am constantly asking people for help now, for everything; walking up the stairs, making me lunch, etc, etc.

My Aunt, who is much like a mother to me, told me I am an invalid.  She said I am no longer aloud to do things for myself.  An INVALID.  Wow.  She is right in many ways, but hearing that makes me feel the same way as saying I can’t drive.  I feel broken and useless.  Jillian wants me to do things for her exclusively (it just took me 5 minutes to come up with the word “exclusively”).  I can barely do anything for her, with the exception of snuggling with her on the couch.  The things she asks me to do are the simple, daily things; get her milk, fix her lunch, help her brush her teeth, and give her a bath.  I can’t do these things most of the time, especially late in the day.  She doesn’t understand, she just gets frustrated and starts to cry.  She knows something is wrong.  I HATE THIS.  She is my baby and I want to be her mother.  She is growing so fast, she will not be four for much longer.  She will not want to cuddle with me for much longer; she will become independent and stop asking me to do the simple things of daily life.  Because of this hateful illness and the others that have been discovered, I am now an INVALID. 

The swelling has reappeared.  It is in my feet slightly and in my face a lot.  The “twitching” is increasing.  I thought it was supposed to decrease over these weeks.  The doctor alluded that I may feel better over the “stabilizing” phase of the treatment.  As is usual for me, I do things backwards.  I am not getting better and in a few weeks I will get even worse.  According to the doctor, I will be the sickest I have been in my life.  This scares the SHIT out of me.  All three of the diseases I have can cause seizures.  Seizures cause uncontrolled movement and usually the loss of bladder control.  What if this happens?  What if this happens in front of my children?  My biggest fear is scaring my children more than they are already scared.  My mom offered for me to stay with her during the worst weeks of treatment.  I am thinking about this option, the main thing that is preventing me from going are my dogs and my bed.  That is the absolute truth.  These are the two things that give me absolute comfort, especially the newest Corgi.  I am his person.  Kahlua is just too old to go anywhere she is not familiar with.  I am her person, too. 

The future is still so unclear.  Tom and I still have so many things to do in preparation for the worst of my sickness.  We are making progress.  We are figuring out ways to save money since my pay will be decreased.   We are looking at different schools for Dylan.  We have a long road ahead of us, but neither of us realized the bumpy road was going to start so soon.