So Much To Say happens to be one of my favorite Dave Matthews songs, incidentally.
Beyond a great tune, it’s also what’s in my head tonight. I feel like I took a Ritalin about 35 minutes ago, and suddenly my mind is totally awake. The only problem is it’s still foggy, so it’s like being really awake in the dark…kinda useless. The reason for my semi-manic mind swings is because I haven’t had a computer for the last 10 days. Today I have it back, I also have Internet, I have my cable box…I feel like I’m finally starting to settle in to my new home, 6 weeks later. The day we got the wireless fixed so my laptop would connect, the power cord died. It took a local computer company 9 days to figure out I needed a new cord, which I ended up buying at Wal Mart…but I digress, this is not the platform to b*tch about my issues with local businesses.
Today has been a horrible day, but oddly I woke up feeling pretty good this morning. I told my Mom it was the first morning in at least 3 weeks I have woken up and not felt terrible. I haven’t had any good days for at least 3 weeks either, they haven’t been horrible days, they’ve just been awful. Now, try and follow that reasoning and you will understand what I mean about the awakened sense of brain fog I’m experiencing.
I had a 9 day hiatus from the IV antibiotics thanks to the joy of modern day health care. My health insurance (once again I will say I have one of the best health insurance plans you can have in New York state) cut off paying for the medicine after 28 days, stating there is no scientific proof that extended antibiotic therapy will provide any relief for Lyme disease. We kind of knew that was going to happen, and that we’d be facing a $150 a day bill to continue on with the medicine and home health nurse agency. Luckily, thanks to a nurse at my Dr’s office (big ups to Kim) we found an amazing company in Fl (Alyssa told me about them 3 months ago, but of course I forgot all about it by the time I needed the info) that quoted me $35 a day, including all the supplies I would need. The final cost came to under $31 a day, for pre-mixed medicine that come in infusion balls that work so much better than the IV bags requiring gravity (which has never been a great friend of mine). After grumbling for 9 days that after finally getting started and used to the infusions I had to stop, I was pleased to know everything (once again) worked out exactly as it needed to to keep on this journey towards healing. Had we gotten things worked out earlier I would be paying a lot more for the medicine than I currently am. (On a side note, many other Lymies are scrambling for the info of this company because they are paying so much more for their medicine, if you are interested in the info send an email to LymeBitesDotCom@yahoo.com, I will be posting the info as soon as I touch base with the company for some info an permission (pesky permission, always causing me grief).
So I am a week into my second month of IV treatment and still hanging on. I have to say the transition to having the PICC line and starting the IV meds, as well as moving back home and giving up my apartment was probably a bit more than my fragile Lyme ridden self was prepared to handle, but it’s been 6 weeks now and so far nobody has had to file any police reports, so I think we’re doing pretty good.
I know many people are at the point of hoping for a miracle right now. I keep getting questioned by people asking if I’m getting better yet. It’s good to know I’m not the only one who is growing extremely impatient with this disease. Sunday was my 10 month “sickerversary”. I talk to my new “Lymie” friends who are in years 1, 2, 3 or more in their treatment and I have to remember that I’ve only gotten 10 months under my belt. I have a long road ahead of me, so I have to keep trying to be patient day after day, no matter how long the tunnel seems before I can see any light again. It’s tough at times to be patient, but I remember how far I’ve come in 10 months. I think back to those first few months and how awful each and every day was. While it’s been slow and painful (literally and figuratively), it has been progress nonetheless.
I’m hoping the shake up in today’s pain and suffering, from the waking up feeling fine to feeling like I had come down with some horrible flu, means that something is happening with the meds I’m on now. Unless any herx reactions I am having are very subtle, I haven’t seemed to have a real good old fashioned herx since going on the IV meds. I’m not really complaining…just in a way wanting to get the inevitable over with. I’ve got a few months of being of the IV ahead of me, there’s a lot of little buggers in my body that need a good butt whompin, and this is the best way to do it. In a way I picture myself, 5 or 6 months from now feeling much better, doing my infusions from my desk at work while sipping tea and eating crumpets. Not that I’ve ever sipped tea and eaten crumpets in my entire state career, but it sounds like something I might like to try…someone put that on my “Post-Lyme Bucket List” please.
Got a lot of exciting info coming up about May, which is Lyme Disease Awareness month. If you’re reading this, please get involved in some way with some form of Lyme Disease awareness in your area, and if there isn’t anything then PLEASE START SOMETHING. I would give anything to have been “aware” 2 years or 8 years ago, at any point in the last 25 years really, to have been able to have avoided the last 10 months. What it’s done to my body, my mind, my life, my family, my friends, my HAIR, and my ability to drive and text at the same time (nobody tell Oprah, last thing I need is her all up in my kool aid making me sign the ‘No Phone Zone’ pledge.
Stay tuned…tomorrow could get interesting. Or it could be just another day in bed watching Will and Grace reruns, TBS afternoon reruns followed up by a round of Friends reruns (are you noticing a pattern here????)
What are you waiting for???? Go. Now. Find something to get involved with in May, the month of Lyme Disease Awareness!!! (And on a side note, also the month of my birthday, as well as my one year sickerversary…I am accepting gifts for both occasions.)