Lyme Disease - MS Misdiagnosis from DanW on Vimeo.
A lot of times, when we're out in public, I'll just roll my eyes or laugh it off. It's still difficult sometimes when you know people are sizing you up trying to figure out why you...someone who doesn't even look sick...walk like you're intoxicated, have to use a cane, and can't control your muscle movements. This is all a part of the process. Since the Lyme is neurological that means it's in my brain and affects all of those things. The times I start to get a little self-conscious I'll just think about what my sweet little girl said because...if she doesn't care, why should I?
Wow...this is another eye-opening documentary. It's awesome, but heartbreaking. We are fortunate to have Congressman Randy Forbes as our Sunday school teacher. I've enjoyed this class so much. The week before last I was too sick to go to church. I wasn't sure I would be able to make it to church for Mother's Day, but I hadn't missed a Mother's Day yet and I wasn't about to start. Fortunately, I woke up yesterday feeling okay, although I was fatigued and physically weak. My abdominal muscles felt like I had done about 200 sit-ups the day before, but I was going to church no matter what. I am so glad I did. It seems like the last month or so that the Sunday school lessons or sermons have been about me. What is that about?! Yesterday, Randy was talking about what people do when there is a flood in their life. Rains come along all through your life, but there are times when the really bad things (what I have referred to as wrinkles) come along. Those are the floods. How do you handle the floods?
He said that people either tend to be paralyzed by fear or run to the roar. He told a story about how when a lion hunts, he sits at the edge of the grasslands. He doesn't hide. He's sitting there very visible, even prominently. Then there are the lionesses...9-12 in a pride. The lionesses are the hunters. They hide at the opposite ends of the grasslands where they can't be seen. When the prey wanders into their hunting grounds, the lion starts to roar. The animals, being frightened by the lion, change their direction, run from the roar, and run right into the waiting harem of lionesses. If they had only run toward the roar, they would have survived. Avoiding a problem is not going to solve it. It will only put it off for a time. I knew immediately what it is that I do. I run to the roar. I thought about this a lot before I actually decided to do a video. Before today I didn't even know how to work the camera on my laptop. Of course, it is a relatively new laptop, so I'm going to go with that excuse. One of the main reasons I had to think about it was because I wasn't sure how personal I wanted to get with this. I mean, I know I wanted to put everything out there, but I realized that reading something on a computer screen isn't nearly as effective as seeing it through the wonders of video. After all, seeing is believing. It was difficult for me to do because sometimes I find the uncontrollable muscle spasms to be embarrassing. I don't like to use the word "spasm" for the twitching and jerking, because I always pair the word "extreme pain" with spasm. I've had those, too, as recently as last week. It's the kind of muscle spasm that wakes you from a dead sleep with tears in your eyes screaming for the pain to stop and causing you to contort your body into positions you didn't know you were flexible enough to maneuver into. This wasn't really a bad day for me. I would be unable to sit and actually do a video. This was more of an okay day. Of course, there are always a couple of things you know you got wrong after you stop the video. I will be on a total of 3 antibiotics this round, not 4. Mepron is an anti-malarial and that one is specifically to target the Babesia. That makes 4 meds. The muscle twitching/jerking in the video isn't NEARLY as bad as it is when I'm in bed trying to go to sleep. The neuro part of it also has an effect on my speech sometimes, which I noticed a couple of times in the video. The numbness in my face and slight Bell's palsy on the right side seem to have somewhat abated. Will they come back? I don't know. I think every step in this protocol will be something new and different. I didn't really say everything I wanted to say in the video, but I suppose it was a good start. On the 2nd I mentioned how much there is to remember in the month of May and that the first thing starting it off was my husband's grandmother's birthday. She turned 89 on the 3rd and she died, somewhat unexpectedly, on the 4th. My husband flew to Louisiana to be there for the funeral leaving me and my daughter here. There is no way in the world I could have made the trip. I am far too weak. That was a true test. While he was gone I had to add two new medications...something I did NOT want to do. If I hadn't, I would have had to waste 3 of the injections I had received the day he left. I had decided at the beginning that the one thing that wouldn't be too wise was starting a new medication when I'm here alone.
The Mepron seems to be doing its work. I'm very uncoordinated and have to use a cane to walk. I haven't driven past the bus stop in two weeks because I don't feel safe. My muscles get so fatigued that sometimes I'm unable to point the remote control at the TV. There are times when I wake up from a nap that I'm unable to move my arms and legs. I just have to lay there until my body decides to cooperate. My intractable migraines have come back, although they are not as bad as they usually are. The air hunger is worse. Then there's the new thing. It happens when I go to bed at night. While I'm laying there my muscles start to jerk. It's like I swallowed a handful of Mexican jumping beans. They jerk uncontrollably. I don't know when it's coming and I can't stop it. One interesting note...my ears weren't hardly roaring/ringing at all last night. I get exhausted very easily and my muscles start shaking like I've spent all morning in the gym lifting weights. Today marks one month of treatment. Below is a picture of all of the meds I've been on. Dr. Horowitz is one of the leading Lyme-literate medical doctors in the country. This is a very informative video. Bartonella is one of the co-infections I suffer from. Co-infections are also notoriously difficult to get a positive result on in laboratory testing. Most co-infections are treated clinically meaning that it is based on patient history and symptoms. You can read about Bartonella, its symptoms, and its treatment here.
As if there weren't enough things to remember during the month of May, now there's another. My husband's grandmother's birthday starts it off followed by my mom's birthday, Mother's Day, Memorial Day, and my birthday. So, it seems appropriate that, during my birthday month, May is also Lyme Awareness Month.
Today was the start of the Mepron. This is the anti-malarial for Babesia and is expected to make me sick. The waiting begins. Not only is today May Day, it is actually the start of the The Mayday Project rally. |
AuthorMy name is Deanna...proud Navy wife, mom to one, follower of the One, pianist, registered nurse, avid knitter, crocheter, reader, & lover of languages. I also love to write. I have had undiganosed Lyme disease for 32 years following a tick bite when I was 11. Archives
March 2017
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