personal journey with lyme disease

Relapses, bulging disks and doctors – OH MY Part 3 September 27, 2013

Filed under: Uncategorized — iammorethanlyme @ 5:13 pm
Tags: , ,

Feeling totally dis-empowered now by the eight days of waiting for a doctor to help me with my back, I went to their website to send an email and their computers are still being upgraded.  Wait, what’s that..Contact Us and when I clicked on it, there was the phone number and a title “We Value Your Opinion” with a box to type in.  Hmmm, should I, dare I, what the heck.  My first line was, “I wish you valued your patients.”  Subtle, of course not. I went on to detail as in as few words as I could what had transpired this past week.  I ended with, “Please tell me what I did wrong.”  Then I added my name, phone number and email address.

I thought that this would not be seen for a while and started to get angry at myself for sending it.  Apparently I had done something wrong.  Why would any doctor that you have a very good relationship with let you suffer as I have for the past week?  As I mentally beat myself up, I decided to call my Lyme doctor as I have been waiting to be rescheduled and had to leave a voice mail.

No more than 10 minutes later, the phone rings and it is my PCP’s assistant telling me that a note for physical therapy had been faxed to the number I had provided.  Could someone have possibly read that email already?  Probably coincidence, right?  My phone rings again; it is my Lyme doctor’s office.  The news is not as good.  She is still out on medical leave and will be back soon on a part-time basis.  I am concerned as I know she was being treated for Lyme when we met, but it is none of my business to ask.  When is my appointment?  Monday, NOVEMBER 4th at 9:30 in the morning.  That will be four months from the last time I saw her and I have not been well since the last visit.

Time for more mental notes to self; “Why should I be upset?”, “It’s not her fault she is ill.” “It’s almost October already, so I’ll be fine till November.”  This is me and my brain.  The same brain that had me convinced I might as well give up the idea of physical therapy and suck it up.  Unfortunately, this is not due to Lyme, this is the way I am wired.  I MUST have done something wrong to have these things happen to me.  It is easier to turn the feelings inward.  At least that is what I tell myself well knowing it is costing me a lot actually.


Part 2 of The Pits September 25, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:00 am

As I went off topic with my little rant, I did not tell you the kicker to the Lyme flare up.  The herniated disks in my lower back that I have kept in check for the past 15 years decided to let loose last Thursday.  They had been hinting that they were looking to cause trouble the past few weeks, but I kept them in check with my exercises.  It is always the most boring thing that triggers disks to bulge and, sure enough, I was just stepping into a pair of shorts.  I picked up my right foot and the spasm took my breath away.  Wait, wait, it will pass.  No such luck.  Tylenol and heat were the first things I did.  Somehow I got down on the ground and did my back stretches that I learned 15 years ago after facet blocks and a “boot camp” exercise program to strengthen my core and back.  Oh, yes, LYME did this to my disks and has caused degeneration in my cervical spine as well.

I waited 24 hours to call my doctor and found out the office was closed while they ramped up their computer systems.  I just wanted a note for physical therapy as I am well known where I go as they spent six months teaching me to walk on my own.  I called back and pressed “0” to speak with the answering service.  They took my information and said they would page my doctor.  My doctor has been incredible, but I did not hear from him at all Friday.  Did I call back?  Nope, I just rode it out through the weekend.

Monday morning, still in the same pain, I call and get his assistant.  She knows me well, too.  I explain that I am trying to get a note faxed for PT for my herniated disks.  I am not looking for pain meds.  She asks me the usual; “have he seen you for this before” and I say not this issue specifically, but he is aware of my history.  “OK, I will give him the message.”

It is Wednesday – I am wondering when she is going to give him the message?!  No, I didn’t call back on Tuesday because I feel awkward.  I know I don’t need to be seen as he will just give me a note for PT.  I don’t have a way to get to his office as I don’t drive and people aren’t on call 24/7 for me.  Am I unreasonable to think that I was just trying to make this easy for everyone?  The people at PT would have called me if they received the fax.

Today is Wednesday and I am still in substantial pain.  But as with Lyme, I try to compartmentalize it and put it to the side.  If I let myself think about it, I am really angry that I did not even get a call back yet saying that I need to be seen by the doctor.  I try not to think that way as it just leads me down a path to all the things I am angry about thanks to what Lyme has taken from me.  There is so much anger, guilt, sadness and loss associated with this dreadful disease that I keep that as far down inside as I can.  I am afraid of what will happen if I let it to the surface.  That is for another blog.  I am also happy for everyone I have in my life and for the sun shining and only getting up once during the night to use the bathroom! 

Well I seem to have gone off point again.  It is Wednesday.  It has been a week of severe back pain.  I don’t do ERs for back pain.  I will email the office when I finish this post.  How will I word it?  I’m not sure.  I know how I would like to write it, but that is the stuff I keep tucked down deep.  I would have reached out to my Lyme doctor, but she has been on medical leave.  Why am I making excuses – the doctor should have called me back last Friday and I should not be feeling guilty about bothering them.  Here goes…………


Relapses are the pits September 24, 2013

Filed under: Uncategorized — iammorethanlyme @ 6:19 pm

Relapses are the pits.


Relapses are the pits

Filed under: Uncategorized — iammorethanlyme @ 5:58 pm
Tags: , , ,

I having been missing from life in general for the past few months.  I have run from social media rather than reach out to the friends I have made the last few years.  I have had the pleasure of entering “peri” menopause for the past six months, which has just added to the party in my body.  Holy hot flashes, anxiety like nothing I experienced before and more fatigue!  Ain’t that peachy.  The hardest thing for me is the emotional roller coaster.  I had pretty much kept it together through this heinous journey called Lyme, but WHOA, thanks menopause for making me cry because I threw out an uneaten ear of corn on the cob…are you kidding me?

I didn’t shed a tear through spinal taps, EMGs, nerve conduction tests, autonomic nervous system tests and the daily pain of chronic lyme.  An ear of corn?? I didn’t even want it.  Dave has been unfailing in his sympathy as he watches my brain flip a switch and off I go to another personality.  He has had to endure the fact that I have found the best way to get out of my foul moods is to scare the piss out of him.  I laugh till I cry while I usually hear a deep breath and something creative from his lips, like, “blow me”.

I do this all the while knowing that he has been dealing with atypical migraines for over six months that require medication and physical therapy.  I do this while he is in the throws of quarter-end at work and is currently working 12 hour days till the end of the month.  I do this because I am afraid of what I might do or say if I let the bad mood “out”.  Dave graciously accepts this behavior.

Lyme brain is what we lymies refer to as the reason why we act the way we do at times.  There is confusion, short-term memory loss, cognitive issues and a list to long for right now.  Menopause brain is a whole different creature.  If you combine the two, you get me, a person who is looking for things I haven’t lost yet.  A person who wants to do something productive, but can’t get out of her own way.  It is a good day if a laundry gets done from washer to being put away.  It is a good day if I make dinner.  It is a super day if I do more than one thing. 

I had a five week period of pure happiness mid-April till mid-May when my Bartonella was being destroyed by IV Rifampin.  I was up by 6 in the morning and out the door for a walk; something I had not done in over eight years. Then my PICC line started to leak and I had to get a new one in my other arm.  The new PICC line caused an unending skin infection that caused me to have a nurse visit every few days to do a dressing change as my infection was just weeping through the insertion site of the PICC line.  Between the leaking line and the skin infection, I was feeling worse mentally and physically.  Then Big Pharma had to add to the misery by putting IV Rifampin 600mg on backorder.  How dare they?  I don’t know how they sleep at night knowing that people are suffering because you don’t feel you are making enough profit when a drug is generic.  The backorder wasn’t for a month or two – it is until January 2014.  So we made the decision to remove the PICC line as I had the skin infection and the drug wasn’t available.

This happens with many people that are sick with many diseases.  The government and big pharmaceutical companies are in bed together.  The corruption is disgusting.  Lyme is a whole different animal in the fact that it is still not recognized as a disease.  We are lied to by the government, CDC, IDSA, and doctors who refuse to name this as a disease.  That would require insurance companies to cover it.  This would allow doctors who believe in Lyme and it’s co-infections to adequately treat patients without the fear of being taken to court.  This would make treatment local and not make us drive to another state for treatment.  The cost is not just in money, but in the stress the trip takes on the Lymie and, in my case, the fact that I am unable to drive (yet) and depend on other people to help me.  I have wonderful people!

Oh, look, off on a rant I go.  Not really a rant as I don’t have it in me lately.  So to wrap up this odd attempt at blogging again, let’s just say that I don’t have the mental ability right now to read all the incredible information that is put on Facebook by people dedicated to fighting with everything they have to bring Lyme to the forefront of the news, where it belongs.  I plan on re-entering that part of my life.  I want to contribute; I want to be there with information and support for other people suffering with the endless disease.  I did do that for a long time.  Right now I need quiet.  I need to stop all these voices running around in my head telling me what I should be doing and making me feel bad all the time.  I need my friends who might read this to know that I am keeping you in my prayers and hoping you are fighting as hard as I am.  Thank you.