This week I have been off treatment, and have had my good days and bad. At this point, I am not sure if it really makes a whole lot of difference if I am on treatment or not. That is with the exception of my “modified” protocol, in which I had probably the best two days that I have had in months, maybe even close to a year.
I have had to hit my heart monitor button once this week, on the worst day that I had. I felt lightheaded, dizzy, numb, and just plain out of it. My tics came back.
I ended up pressing the monitor up to my chest when I was sitting in my car, waiting to be able to get enough “oomph” to pick up the mail at the post office. I had my blood pressure cuff with me, and my blood pressure was entirely within the normal range, yet my heart rate was at 120 sitting down.
Part of the problem I think was my Midodrine was acting up, as I checked my blood pressure again a few hours later, and it was 146/80. Hmm.. That is like a middle aged fat man that likes his McDonald’s. Since that day, my readings have been normal, so I am just going to consider that a fluke.
As I pulled into my driveway, one of my best friends surprised me, and was doing some gardening, planting flowers in my whiskey barrel on my front porch. That really made my day. The little things are really big, especially when you are having a terrible Lyme day.
Other than that one day, I have been feeling the same as I usually have been, with one of the worst symptoms being exhaustion. As soon as I hit my couch in the early evening, I am out like a light. At night when I wake up, the pain seems to creep in. The back of my neck where there is connective tissue, my hips and thighs, and the painful soles of my feet.
Yesterday I had my follow up gynecologist appointment. I was embarrassed going in, because there is no possible way I can afford another round of Lupron. I told her that not only has my non-period but I feel like I am having a terrible period cramps have gone away, and the excruciating pressure during intercourse had completely gone away. Poof! Gone. But… I can’t pay for another shot.
She told me that Lupron was a diagnostic tool for endometriosis, and that with these significant improvements we have our answer. She knows of my medical history and what I have been through, and told me, “You are way too young to be dealing with all of this, and I can’t believe how you can do it all and still have a smile on your face.”
I don’t really have a choice. You can take two approaches when these sorts of things happen in life. You can be miserable, angry (okay… I have my days I am so angry at the world, but I really think that is okay once in awhile to have those moments), be a victim, or give up.
Or, you can make the most out of things even though they really suck, appreciate and be thankful for anything (there is always silver linings in life, you just need to look deeper), and be strong. Be a warrior. Keep on fighting. That is what I have chosen to do. Finding and using humor has gotten me through a lot of this. No one should give up no matter what their situation. It is important to just keep going, no matter how hard it is, and never give up, because there is always hope.
So, I am kind of a dilly of a pickle. She really wants me to do another round of Lupron, but to my surprise, she is going to write a letter to the manufacturer, telling them my story, how I do poorly with surgery, and we are hoping they will donate another injection for me. Fingers crossed everyone.
I told her how much I appreciated her gesture to help, and if it works, it works. If it doesn’t, I am not going to be in a different situation than I am in now. Completely worth a try.
If this doesn’t work, we are both hoping that the shorter amount of time will keep symptoms at bay as long as possible. When the time comes that the pain is unbearable, I think I am just going to bite the bullet and go for the surgery. With their knowledge of my history, I am sure they will take greater precautions. Also, the surgeon who did my gallbladder surgery is no longer at the hospital, and I was also referred to one of the best surgeons in the state, if it comes to it.
Today is what I like to call my dub work day. I don’t really have to go into work, as I use to always take Thursdays off, but I always go in for a little bit, as there is always something that can be done. I started to feel off, and wasn’t being productive whatsoever, so I decided to head on home, and lay out in the sun a little bit to relax. Also to no longer look like Casper the friendly ghost, with legs so white they could blind you.
As I laid out in the sun, I noticed telltale Bartonella signs popping up on my legs. Marks that look like stretch marks, red dots, little red veins, blue veins popping up everywhere. Umm.. yeah. Probably best to get out of the sun.
Lucky me, I head inside, and I notice something on my calf, other than the Bartonella party going on in my legs. A tiny deer tick, imbedded in my leg. Really? I got it out, took a lighter and burnt it. For those of you who aren’t familiar or do not have Lyme and coinfections, DO NOT BURN THE TICK! Send it out to a laboratory to get the tick tested.
I have gone through this routine before, as I had a tick imbedded in my stomach last winter. Yes, last WINTER. They love me. I must be mighty tasty. I had a conversation with my doctor about what had happened, and if I should do anything different. He told me that with the amount of antibiotics I take, to not worry. That is true, I do take a disgusting amount of antibiotics and herbals, attacking Lyme and coinfections at the same time.
So, although aggravating, I am not going to worry about it, since I am on such an extensive treatment program. I have many coinfections alongside Lyme (I hit the lottery on that one… hooray..) , so there is very few diseases that could be added to the mix.
Now I am just catching up on some emails, and I even got one today from an outreach coordinator for a company, asking me to do a post about education before having surgical procedures or treatments done. That is kind of an honor and exciting, knowing that there are people out there that really are interested in what I have to say and believe I can do good things to help others. We’ll see.
It’s a juicing day, trying to get as much detox in before I start treatment back up in the next few days. I am a little upset though, I am cooking a corned beef for Dave, which is one of my favorites, and the smell is wafting throughout the kitchen and living room. So sad. Oh well. Kale, spinach, and blah it is. Anything to help!
Wishing you all a great rest of the week! I have been posting here and there some of my research blogs for Lyme Awareness Month, so keep your eye out! Remember, educating other as well as yourselves is important, as knowledge is power! ❤