November Part 1 – Tis the Season

I just finished up week one of treatment. I handled bomb day on Friday pretty darn well, so that was pretty great and a bit of a mental boost for me.

Thursday I was pretty out of it but was able to get everything done I needed to. It was my first day of adding Flagyl so that was really to be expected. I started off my morning procrastinating as much as possible to take my lovely little pill, and off I went to the hospital to get my routine blood work done. My results came back with my EOS levels being high once again but now my WBC count is low. Hmm.  A low can really mean a lot of things but I am thinking maybe next week I will go get retested with my new antibiotic schedule for the week and see if anything changes.

After work I tried to get a picture of my fun Halloween candy corn nails…

Needless to say I didn’t my picture post to FB like I wanted to, but I guess it doesn’t really matter since the world can see it now. Haha. I have had for well over a year now ptosis (droopy eye) and now my face tends to do what it wants on occasion. Some of my fellow Lymies suggested I look into a condition called Myasthenia Gravis, which has to do with nerves in your brain, and upon researching on my own I think it fits well.

Eyelid drooping, unstable gait, blurry vision, changes in facial expressions (paralysis or weakness), shortness of breath, difficulty chewing and swallowing (I miss steak) , weakness in arms, legs, and feet. Yup. A yup.  I will mention this to Dr S as I want to make an appointment with him about getting my hormones rechecked for my 4th gynecologist to be as prepared as possible. Maybe it sounds a bit hypochondria-ish but it doesn’t hurt to eliminate it. Not everything is Lyme and coinfections, even though most conditions can be caused by them.

My leg doctor appointment didn’t help me very much. The conclusion my doctor had is that I have inflamed scar tissue in the vein, and I was told to massage it (I already do) and he said the pain should go away within a year. Yes, you heard that right…. A YEAR. Gee thanks, buddy. He gave me the number for a surgeon at a high end hospital to talk to and possibly get it altogether surgically removed. Ick. I guess I will wait and see what happens. I will keep elevating, massaging, and using warm compresses in the meantime.

As you know it was Halloween a few days ago. That only means one thing… SUGAR. LOTS AND LOTS OF SUGAR. Ahhh! I undid all of my hard work of being very careful about what I eat. It happens. Also with it being bomb day on Friday, it was my Chinese food night. We also had no trick or treaters this year, so we had two big bags of peanut M&Ms and Reece’s staring me in the face in a big full bowl. I don’t have any stomach pains like I did, but I am definitely back on track now. I have an incredibly hard time saying “no” to food, especially if it is right in front of me.

I’ve still had breathing issues, and they have kept me up for the past few nights. I am a stomach sleeper, at least when I start to fall asleep (I toss and turn) and it just wasn’t happening. I have been having to prop myself up and sit upright with a pillow to make breathing easier on me.

Yesterday I felt a lot better than I usually do after bomb day. I spent the morning sorting through my bills and I began to get upset. I liked the days when I never had to check my bank account and could just pay bills as they came in. Not having my waitressing job for the past two seasons is killing me. I said it last year but I’ll say it again… maybe next year I will be back to the restaurant again.

I am very grateful that I can still figure things out even though things aren’t perfect right now and I think I am a bit more stressed because it doesn’t help with the holiday season coming up. I’ll find a way.

We did absolutely nothing last night, just stayed in and had cans of soup and that was fine by me. Having a hard time taking a shower lately, I had another episode. I started to black out shortly after hopping in the shower, so I as quickly as possible tried to rinse the soap out of my hair and turn off the water before I collapsed.

I tried calling out to Dave but I was weak and shaking with no response from him as he was in bed, so I ended up dozing off on the tub floor until I was strong enough to pull myself out of the tub. I am pretty sure within a minute of finally getting to bed, I was out like a light.

This morning I woke up with a sore throat, eye pressure, fever, a stuffy and runny nose, and of course my breathing issues along with some coughing and wheezing. I can’t tell if I have a cold or pneumonia again.

I am wondering if this is a part of my breathing issues lately. I have had very high levels of Mycoplasma three times in the past two years, so I would not be surprised if this is the case. Either way, I am pooped.

I start treatment up again tomorrow, the protocol is a little bit different but very similar to my first week. I am a little worried about my cold or whatever it is making things worse, but I will just do what I can and get back home to rest. I can only do so much and all I can do is try my best to so the very best I can. Wish me luck! And remember, tis the season for all sorts of bugs, so wash your hands like crazy!

Happy weekend. 🙂

8 thoughts on “November Part 1 – Tis the Season

  1. Hope you feel better Kim! There is a respiration thing going around, starts off like a cold (sneezing & wheezing) and ends up in the chest. Feels like you can’t get a full breath – that may be what you have or then again could be a Lyme thing! Drink lots of water and get some rest. XO De & Bob

    • The chest and breathing has been awhile but I am hoping it might be just a cold that’s taken forever to kick in. I bet you are leaving NH soon.mperfect timing getting cold. ❤

  2. Kim,
    There is a dr. at St. Elizabeths in boston who specialized in MG Dr. Gorson. I went through that scare too. It really seemed to fit, plus I have so many pics like that. this dr was great. came highly recommended in the mg community. I was convinced I had it, along with the lyme. He took one look at me, and did a physical exam and said, that I definitely did not have mg. He felt that it was more than likely all of my symptoms were coming from the lyme.

    • That’s good to know! I guess ptosis which I did get diagnosed with is a part of it but glad you don’t have it and reassurance that it’s just lyme being a pain. I’ll probably still ask but that does make me feel better. Thank you!

      • oh yes, you should have it checked out, b/c as you know, we are at a higher risk of collecting multiple autoimmune diseases. The issue with neurology is that there are so many specialties within neurology itself. Find a dr. like Gorson that specializes in MG. I found, that like lyme, you can have a seronegative case. So it is important to have a dr. who knows it inside and out, and other like conditions. This way, you don’t have to worry, did I go to the right neurologist.

      • Yeah I have an appointment on Friday I think I am going to email my doc some of the many faces of me so I don’t have to sift through my iPad in front of him. We’ll see. I don’t know if he is familiar with it at all so I might send him a link of info as well..

  3. I have ptosis as well on the right side and droopy mouth on the left side. Not visibily noticible to most but I do my best to hide eye (bangs). Llmd made me aware of mouth that I didn’t notice much but the eye has gotten worse. I couldn’t believe how many with lyme have droopy eyelid/brow issues usually one-sided. I also have lots of kit-kats, twizzlers, reese’s, whoppers, hersheys that I even put some in fridge so it would make me think twice about eating them. Gonna take to both my job and my boyfriends soon. lol Good read. 🙂

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