personal journey with lyme disease

Guys – you might want to skip this one September 1, 2012

Filed under: Uncategorized — iammorethanlyme @ 2:55 pm

Now I lay me down to sleep, I prayer the Lord that I don’t pee, if I should wet myself before I wake, I pray the Lord my sheets to spare.  OK, it does not rhyme and I am not making fun of the prayer.  I say the real one every night.  But I also hope for this every night for over four months now.

I have no idea why all of a sudden I cannot make it from my bed to the bathroom without peeing in my slippers – yes, I said it.  Laugh, it’s a funny image.  Laugh again as I’ve had to go and buy old people Tena Overnight pads.  Laugh some more because the amount and speed that the pee comes out does not keep up with the pad and I still end up peeing in my slippers.  I can tell you that my bedroom and bathroom floors are very clean!  I can tell you that this happens within two hours of going to bed.  I can also tell you that I go to the bathroom before I get ready for bed and take my pills and then when I am going to bed 10 – 15 minutes later.  Yep, I pee both times.  Yep, I use the word “pee” over “urine” or “urinate” because I worked in pediatrics for so long that I’m more comfortable with “pee”.

I described the problem to my gynecologist as I was there for my routine visit and also mentioned how uncomfortable I was “down there”.  She informed me that I had Lichen something and it looked painful and then apologized as she caused another split in my skin during the exam.  I told her I didn’t understand how I had gone from 49 to 80 overnight.  I also told her I had already missed the fun of my 40’s thanks to Lyme and she was so very kind.

She told me that my bladder issues sounded neurological in nature as I described as a gush of water leaving my body as in a pregnant woman’s water breaking.  She did not think it had to do with a sphincter issue at all and was more advanced.  She also said that my Lichen infection was not causing it.  So I have two different issues when I have never had any before – WTF?  She prescribes a cream for the infection and tells me to ask my internist for the name of a uro/gyn to see my for my bladder issue.  I was then instructed to come back in two weeks for a follow up appointment.

I was still waiting on the name of the specialist for my bladder when I went back for my follow up.  The gynecologist was surprised (to say the least) and said “it looks much worse than it did originally!  Great – validation!  I didn’t feel any better, but wasn’t going to say anything.  But once she did, I told her the cream made my skin feel very warm and she said that shouldn’t happen.  Me being me I had applied it twice a day as directed regardless.  Now she is more concerned and says she needs to put me on a stronger steroid cream.  I flinch at the thought of steroids and Lyme, but she says it is topical and is not the same as oral steroids.  Now I am to do this only once a day and she wants to see me back in a month.  That will be this Wednesday, September 5th, and I don’t think it has helped much, but what do I know?!  I do know the first thing I read on the directions was not to apply to the groin area – huh?  Is that just if you are a guy?  Whatever, she prescribed it and I’m using it.

Last Wednesday, I saw one of my internists (yes, I am so special that I have two internists in one practice) and a gyn.  I update him on current medications, on the fact that I am not on any antibiotics since June as I needed to be off them for two months per my neuro-lyme doc in order to have the Borrelia Burghdoff test done.  Luckily I had stopped using Probiotics on my own as my internist says you need to be off of these also.  Gee, thanks for forgetting to tell me that Dr. Neuro-Lyme.

I describe new symptoms to him and he says they all sound like Lyme and he is glad I am having the test done so that when it comes back positive, I will have a treatable diagnosis.  That means insurance will start to pick up more of the bill!  He also told me that he could give me a prescription for Vesicare as my bladder was being spastic and squeezing when it didn’t need to causing me to lose control of my bladder.  I went home and got the prescription and took a pill – drink lots of fluids is one of the directions.  So, how exactly is this going to help?  Well that night, it didn’t help and I ended up being awake from 2:28am until I took a nap later that day.  That morning I take the pill at 8am and I slept 7 hours straight without an accident!  Could it be this easy?  I haven’t slept that long in over 8 years!  Excitedly, I take the next pill at 8am yesterday morning.  Well, I was up two hours later trying to make it to the bathroom – FAIL, but my slippers were spared! At least I get back to sleep until 6 this morning and have already taken a short nap.  I also have two names of doctors to see about this issue.  Thank you internist #2.

Why did I choose to right about this subject?  I just can’t believe new things keep happening.  I now believe that Lyme as affected every part of my body and yet the CDC and IDSA continue to ignore it.  This is only going to get worse as more people become infected.

This month I see the gynecologist, my endocrinologist for a multi-nodular goiter, the eye specialist who is trying to fix my focusing and tracking issues (the exercises must be working as my eyes are “angry” every time I finish them), my massage therapist a few times while she does myofascial massages with Reiki to treat my inflammation, a new LLMD as I was told to get one and my fabulous prior LLMD is still having his own health issues and then I finish the month by seeing my neuro-lyme doctor and having this $600 out-of-pocket test done.  My internist is going to try to get me in with a chiropractor to fix my spine (not a crack, snapple and pop type) and I need to make an appointment with one of the uro/gyn doctors.  I am thinking I will put these off until October as I only have so many people I can ask for rides and my oldest spends most Wednesdays (her day off) taking me somewhere and then Dave uses his vacation days for the long trips to the Lyme doctors and my sister Donna helps when she can.  Hopefully I can get my license soon and that will help with some things.  But, of course, we only have one car now as it has been 6 ½ years since I have driven.  Dave deserves a new(er) car right about now and I can use the Camry (yes, I am daydreaming of driving right now!)

I just don’t know how to write a short blog – sorry.  Have a great long weekend.