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.