Well, week one is coming to an end. It has been a long week to say the very least. If you have Lyme or any chronic illness, you will know that stress exacerbates every little symptom that you can have, and this week was no exception. Here is a summary of week one’s treatment, which would be round 5 of this particular protocol.
Monday was the start of my treatment. I always say, you have about an hour after taking your antibiotics until you know what hits the fan. I felt incredibly high, and my arms and legs felt completely detached from my body, like I was controlling them like a string puppet. I did remain somewhat functional though, until the end of the day. My legs were acting up, and walking from my couch to the kitchen I looked like I was doing an Indian pow-wow dance, just trying to keep my balance from falling or bumping into the walls or door frames.
Tuesday was a crying day. I had a complete meltdown at work. Everything was misplaced off my desk and my files for all my customers vanished. It completely set me off. I already have feelings of being a bad employee, even though I try my hardest to do the best I can, and I knew this was not my fault. I couldn’t stop crying, even when my Mom came in to help me find my missing items. I am not too sure if this was a herx, hitting the bugs hard, or life is getting to me in general. Who knows. For the rest of the day, even though everything got sorted out at work, I kept tearing up until I fell asleep at my usual complete crash time, around 5:00.
Wednesday was a positive day for me. It can’t all be bad, right? The clinic called me, with more changes to be done to my protocol with supplements and wanting more tests to be done, particularly thyroid testing. I felt so good to know that my case is actually being looked at, and it made me feel so much less discouraged about everything. They are trying to figure out the missing pieces of the puzzle.
After a few hours at work, I headed to my gynecologist for a follow up. She asked how the testosterone was going, and I had to tell her that I didn’t see any sort of difference in symptoms, but am grateful my best friend is a cosmetologist because my face is getting rather furry so she gets the job of waxing it all off for me. I told her that nothing has changed symptom wise. I still get the non-period period cramps, and sex is still excruciating. Her thoughts were laparoscopic surgery as we are pretty sure it is endometriosis causing all of my lady issues, but I am still really hesitant on jumping the gun on that one, so we discussed an injection called Lupron.
This drug is a good diagnostic tool to see if I indeed have it. She went over all the side effects, and I had to laugh because they are all a part of my everyday life. Hot flashes. Night sweats. Odd tastes in your mouth. She called this drug, “the big guns”, as it basically puts you into menopause, but I think it is worth a shot to avoid surgery if at all possible.
Even with such a busy day, I feel like I handled myself well symptom wise, and although I napped, I still was glad to run around from work, to the pharmacy, to my doctor appointment, and my phone call with my LLMD’s office. Even something as simple as listening and being attentive on the phone can be a task in itself for me right now.
Thursday. A complete fail. I started my morning off with Flagyl. I was already pretty nauseas before I took it, and mentally I cannot stand it before I even put it in my mouth to swallow. I spent a few minutes dry heaving, then brushed my teeth (a trick to make it not taste as disgusting) to get my first pill down for the day. That was strike one.
I accomplished a lot at the office, but began to get a bit frazzled (we certainly didn’t need another Tuesday breakdown… for everyone’s sake) so I called it quits for the day. I am currently working on getting all the taxes ready to send off to the accountant, even though I basically do everything for them, it is just a safe thing to do to make sure everything is correct, especially for it being a business.
While I was ready to leave the office, I checked my email for my blood work form, and of course it wasn’t there. I specifically had said that my blood work needs to be done on Thursday or Friday (preferably on Thursday according to the Dr), and that I have a hard time getting a draw, so I would like to get everything done at once. No new messages. Refresh. No new messages. Strike two.
It was then time to head to the pharmacy to pick up a long awaited prescription of klonopin for sleep. I had been waiting two weeks for this prescription to be refilled, which is really extremely excessive. Just that morning, it was not accepted. What? Ummm…. you prescribed it to me? At that point I began to freak out inside, because I am now running out, and going cold turkey on such a drug does not seem like the wisest idea. Strike three.
I then asked the pharmacist about my Lupron injection. Of course it was denied by my insurance. A 3 month injection will cost me $3,500. Crap. I told them to wait on it, since I do not have that money kicking around, and I really needed to discuss it with my parents, since they would be helping me pay for it. Strike four.
On the way home, all the stress of everything gave me a complete panic attack. I was hyperventilating in my car, and once I pulled into my driveway I held my hands over my face and cried and cried. What the heck was I suppose to do? Strike five.
My body ached, my chest hurt. What didn’t ache I could no longer feel. I called my parents asking what I should do, and they told me to start by calling the clinic since the daily medication was the first priority. Okie dokie. This is one of those places that a person never picks up the phone and it is always messages, so I called two different departments, trying not to sound like a crying neurotic mess. Trying being the key word here.
I then spent well over an hour talking with my insurance company (Strike 6). Lupron is considered a “specialty” item so it was not covered. I was transferred around quite a bit, and the only shot I had was for my gynecologist to call and say this drug was a medical necessity. Today I found out even after her leg work it was still denied. At least she tried.
I pulled myself together enough to make an easy dinner. A non-Lyme friendly yet delicious pizza, and a salad. Dave had to work the night shift again for snow removal, which I absolutely hate, and I think one of the worst strikes came right before he left to head back to work.
He has been paying bills completely off which is great, but I had found out he had called around and was approved to buy a tractor. I know this may sound impractical for some, but I really know he would use it all the time. There is always something to be done around here. Whether it is with the yard, or moving around the giant piles of snow so that pulling out of our driveway isn’t a death trap. Being the mean wife I am, I said no. Not right now.
Understandably, he was angry. Yet in my mind, it is terrible timing. You simply cannot take on another payment, regardless of paying one off when your wife might need to take a large chunk of money from her parents. You just can’t. That really isn’t fair to my parents. I know not only not getting the tractor he has his eyes set on and just needs to sign on the dotted line to bring it home, and also having to call them to back out of the deal is a sucky thing. He then said something that resonated with me. He basically said to me that I ruin everything that he has wanted in the past two and a half years. Ouch.
I am a firm believer that although when you say things out of anger that you don’t really mean, there is always at least a smidgen of truth to it. Sometimes a lot of truth. I will give him huge credit, as when one spouse is sick, the other is living in the nightmare too, and he has done a lot of great things and has been amazing throughout this long agonizing process, but this is the first real moment that I have felt resentment.
Along with the whole bad timing theme I have going here, hearing these words was the worst timing after such a stressful day. Deep down, a little piece of my heart broke last night. I know realistically dealing with me and this illness has to be really, really hard, but now I have even greater feelings of inadequacy, and that I am bringing him down. It has left me wondering nearly in a state of paranoia what else he could really be feeling. Everything will be okay. I know he loves me, A LOT. I am just sad. Really sad.
Today is my last day of week one’s treatment! I am really glad. I think that this week would have gone over very well if everything wasn’t stressful, but hey, that is life, and we all have to own it and deal with it. I did a great job at work, and went to the pharmacy and to my surprise, I got my prescription in! Yay! I really don’t know what I am going to do about the Lupron shot, as it still wasn’t covered.
Cost wise, it might just be better off getting the surgery, even though I am a high risk patient. That makes me terrified, from my past experience with my gallbladder surgery, and my bigger fear is what if they find absolutely nothing wrong? I have a feeling (you tend to know) that they will find something, but I don’t want to go thru everything and once again have no answers. I was hoping this shot would give me the answers I need. I have a lot of thinking to do. For right now, that thinking cap is turned off for the rest of the day. I need to relax and just breathe. Don’t forget, there is always one huge silver lining of bomb day, Chinese food!
Have a great weekend everyone!