Well I got the official word yesterday that on June 23rd I get my Power Line (central line) put in and start my antibiotic treatment. Its going to be a long day. I have to be in DC (a 1.5-2 hour drive) by 830 to get my line put in. After I recover from that I get to head over to my doctor’s office. My mom and I have to go through a 3-4 hour class on how to do the injections and change my dressing and all the stuff that goes with treatment (good and bad.)
So how do I feel about this? Mixed emotions to say the least. I can’t wait to start treatment so I can get better but at the same time I’m really nervous and scared. First of all I’m allergic to a host of antibiotics so I’m worried about having a reaction to them. Second, as sick as I have been, I don’t want to get worse and be confined to bed or lose the ability to care for myself or herx. I know in the end it will all be worth it, its just the next 9 months or so that I have to worry about.
I’m working on recruiting as many people as I can to come stay with me to give my mom a break. I cannot be left alone AT ALL for the 1st month, I have to have someone with me 24/7. That unto itself is gonna be hard for me because I’m so used to being alone most of the time now, especially since I had to medically retire from work. I have a few friends that have been regulars but for the most part, it feels like so many people have abandoned me. Good way to find out who your real friends are : get sick and people disappear like David Copperfield. Its really kind of sad.
Anyway, for those of you wondering what treatment entails let me try to explain the best I can. Once I get the central line and get the meds (keep in mind that I will be continuing all the supplements and meds I’m on now) I will be injecting antibiotics straight into my heart via the central line. I’m not sure of the exact schedule but I will be injecting twice a day every other day for week (i.e. Monday, Wednesday, Friday) and then I will be off for a week and then the following week I will be injecting again. Seems pretty simple right? Not so much.
I have to worry about all the things that can go wrong and how my body will handle the antibiotics. Seizure? Herx? Bedridden? Coma? Its all a risk that I’m taking (and an expensive one at that.) If there was another option, especially one covered by insurance, I would take it. But THIS IS MY ONLY OPTION!
I love how people just assume that I have no idea what I’m doing. I know that brain function continues to diminish (almost daily at this point) but when I was coherent I researched the hell out of this disease. I did my homework and I made an informed decision. I made that decision with the help of others I trusted, mostly my mom since she has been to every appointment with me at this clinic. I could on and on about the facts, the denial by the insurance companies and unwillingness of the CDC and NIH to change their protocols to ones that actually work.
(Side note-I find it hysterical and unfathomable that you can file for federal disability for Lyme but you can’t get an insurance company to treat it. So instead we have all these people that are able to be healed enough to get off disability but instead the government wastes literally millions of dollars a year on a treatable disease. That’s where your tax dollars go!)
As an update on my last post my anxiety and OCD are still out of control but they have calmed down a couple notches. My doctor has upped some of meds which are helping to chill me out and sleep better. Truth be known, I don’t think my anxiety and OCD will ever go away fully. I think its part of me. I would just like to be under control and quirks rather than full blown craziness, which it is now.
My health continues to decline. Tremors and twitches are worse. I’m having less and less “good” days. I suffer from CRS (can’t remember shit!) I can walk 5 feet and forget where I was going. I forgot what year it was today. Month and date I’ve never been good with thanks to shift work but its far worse now. I could go on about my decline but what’s the point? I’m sick. Very sick. I’m going to get treatment and I’m going to get better (not cured) and I can have a better quality of life than I’ve had in years. So I focus on my what I can do. I still try to accomplish one thing a day. It might be miniscule to anyone else but its something to me and that’s all that matters.
If you are reading this and suffering, I know what you’re going through. I understand and empathize. But keep your chin up. DON’T LET THE BASTARDS WIN!! There is help and there is hope. Count your blessings and set goal (as small as you need to) because it will help keep you going. Don’t focus on all that’s wrong. (Ok, every now and then you can throw a pity party.) I worry everyday about everything. Money, being a burden, asking for help, how its going to be living with my mom after living alone for 4 years, what my future holds, how much brain function I will get back. the list goes on. I can’t stop it but I can redirect it and that’s what I try to do. I try to just take it “one day at a time” and sometimes its one minute at a time. I didn’t do anything to deserve this and neither did you. It sucks and its unfair. I have shifted to looking at it differently. I sit outside and notice nature in a way I don’t think I ever really have, I watch the way people interact, I count my blessings. So I can’t go back to the job I loved, maybe it was God’s way of getting me out of the stress and giving me a second chance to have the life I’ve always dreamed of. Point is life is unfair. As Kurt Cobain says “Nobody dies a virgin, life fucks us all.” But you can conquer this. I’m a fighter and I’m not giving up and neither should you. No one will understand your battle, your journey unless they go through it. Just accept that people are morons and most only believe what they can see. Follow your heart and your gut. Stay strong fellow Lymers!!