personal journey with lyme disease

Relapses are the pits September 24, 2013

Filed under: Uncategorized — iammorethanlyme @ 5:58 pm
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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.


7 Responses to “Relapses are the pits”

  1. I think about you all the time and know that you are struggling. I am sorry for the addition of the menopause symptoms. grrrr . . . it never ends. And I am just as angry about the fact that people without consciences stop the availability of antibiotics that people with Lyme disease need for treatment. Doxy is also barely available and is now prohibitively expensive. I gave up on the medical profession while I go through my own Lyme and other health issue problems. Just know that I am thinking about you a lot. You take all of the time that you need, and find the quiet whenever it is necessary for YOUR own health and healing.

    Big hug,


    • Michele, you are one of the people I miss on FB. I am well aware of the Doxy issue as well as others. The world of supplements runs into big money, too, and it is not covered at all by insurance. The whole process is insane and just adds to the depression, anxiety and stress of Lyme. You are an inspiration in all that you accomplish as you continue to push forward through it all and raise wonderful sons, go to college, grow your own food, knit for your grandkids and push for your rights. xoxo


      • Thank you, Kathi, for the kind words. Some days it isn’t so difficult, but then there are the tired, discouraged days such as today. We can only keep fighting, refusing to be silent about our struggles.


  2. Donna Says:

    So glad to see you posting….. Always thinking of you and know exactly what you mean with needing the quiet , and stopping the voices from telling you what you need to be doing… I’ve slowed down my self with treatment.. My poor stomach can’t handle it …. what a mess …. I to am in menopause, so I know exactly what ur going through… Keep up the rest and hope,,,, we will all get there… I’ll be here when you get back to FB take ur time do what you have to get what you need…. Hugs sweetie…


  3. robin hall Says:

    Kathy, when I started peri-menopause all I did was cry. of course, at the time I did not know I had entered peri-menopause, but I soon figured it out. it was awful, I cried all the time. and not just tears, sobbing! I guess it lasted about a year or so. then all the other lovely symptoms kicked in. welcome to the club. I am so happy that we’ve run into each a few times over the summer. you are beautiful inside and out and I really, really hope you feel better asap! I continue to pray for you ♥


    • Thanks for the kind words, Robin. At first I didn’t realize what was going on as any time I change medications, it would screw up my cycle. Now I am going on seven months!!! My sister has found the Menopause Sucks page, as I had noticed you liked it, and it helped save her sanity. All my symptoms are in full swing now. I have loved running into you, too, and would love to plan a real visit for coffee. You are everything I remember from back in grade school. xoxoxo


  4. Chris Urbanowski Says:

    I’m so sorry, Kathy. Relapses are the pits. I’m not sure where I am with peri-menopause, but I’m definitely frightened about what new symptoms it may bring. I think of you often and am so very sorry about the relapse, the rifampin and the infection. Hang on, my friend.


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