“You look absolutely exhausted!” I don’t know if that comment is a good thing or a bad thing sometimes. I ran into an acquaintance while trying to do a little grocery shopping, with Dave. I was feeling umm, well.. exhausted, so I took my own small cart so I didn’t have to wander around the whole store, and get the items we needed in a small section of the store.
That comment means to me a couple of different things, and I guess I take it more than one way. In some weird way, I find it not as terrible as the remark that I look like I got hit by a train, rather that one may be able to possibly recognize that I am sick. It might possibly make someone more aware that something is going on inside of me, that I feel like I am falling apart. I am not invisible.
On the other hand, it is kind of one of those comments that you do think to yourself, “Wow, I look terrible. I want to look good and not like I am a ghostly white punching bag, with stringy hair nonetheless.” My self confidence dropped a point or two. Eh. At least I put on deodorant that day…
Dave and I decided to do some easy cooking for the night, just shrimp cocktail, and munch on snacks. We weren’t really starving, so it worked out fine, although we got little to no nutrition for the evening.
I decided to try to bake some gluten free cookies. I was looking for my supplies, and needed a big bowl to mix, a cookie tray, etc. etc. I ended up completely losing my balance leaning over to look for supplies and took a dive to the floor. I was able to protect my face, my pasty white raccoon face, with my arms at least, but fell directly onto my knees. Ouchies.
My cookies came out awesome I must say, but only limited myself to one, as sugar is not a friend of mine.
As the night went on, I began to worry about what the start of my protocol would be like. Am I going to be alright? I hope I can at least function… I was nervous. Morning came, and Dave leaves for work about an hour or so before I have to wake up in the morning. I was still half asleep, but I could feel him kiss my forehead, as he does every morning before he leaves, and exclaim, “You are completely soaked!”. He then ran his fingers down my hair, and it felt like I had just came out of the shower. Babesia at it’s finest.
My alarm clock went off, I let the dogs out, and I sat on the couch, staring at the bottle of Enula I just opened, and my protocol sheet. I just stared and stared. I don’t really want to start this. But I gotta! It’ll be okay. Light at the end of the tunnel, one step closer…
On the plus side, it gave me the chance to sing my “Peanut Butter Mepron Time” song, while I was doing my dosage of liquid gold. I took everything else I needed to take for the morning, between my other antibiotics, parasitic treatments, herbals, and seizure meds, and thought to myself, “One hour. I will know in exactly one hour”. That hour came, and I was pretty loopy. I was pouring buckets of sweat, and my body felt like it was moving even though I knew I was sitting still at my office desk. I was glad I did most of my work the day before, as my concentration was rather lacking. Licking envelopes really doesn’t take that much effort or half a brain to do.
Everything tastes disgusting to me today, and everything smells terrible. My pig out session of snacks later tonight will probably be cut short, as if they aren’t delicious, then it really isn’t worth eating things that are bad for you. At least it sops up any potential nausea, and my doctor is okay with it as it seems to be one of the only things that helps.
As soon as I got done work, I had an abundance of errands to run. The post office, the bank for work, my bank, the pharmacy, and the hospital. I needed to get stamps for work and drop off some bills that needed to be sent out, deposit checks for work, deposit a check for myself, and go to the hospital to pay a few bills. “PAST DUE” is never a good sign.
The woman was looking at one of my unpaid bills, and she told me not to pay it, it looked like the radiology department didn’t even try to use my insurance. That was a relief so I don’t have to worry about it, and she wrote a big note that it was okay I didn’t pay it and they need to look into it. It is nice not having weekly bills at the hospital as I no longer have my IVs. A few less things to empty out my wallet.
I just got home a little while ago, and after my adventures of the day, I don’t want to move. I am sitting on my couch, tasting that disgusting taste in my mouth that brushing my teeth and mouthwash won’t touch, and taking in the smells that I can’t put my finger on. It is like that Fabreeze vent clip commercial, when they say you don’t smell anything, but your guests smell this..” Only I am the lucky guest that is getting a hint of every single stinky thing. Yuck.
I feel like I need to keep moving. My body is starting to get really painful, and my superficial thrombophlebitis is kicking in again. In other words, a vein in my leg is full of dried blood, so it becomes inflamed and rather painful. I need to get it decompressed again, but another day. Walking seems to help, and it might help with my joints to loosen them up. Maybe I will throw a vacuum job in there, and look at my last two little pumpkins that have survived in my garden.
Today definitely hasn’t been great, but I am beyond grateful that I am making it through and staying tough. I don’t know what tonight, tomorrow, or the next day and next day will bring, but I am okay. This will all be okay.
A Posting for a Friend:
September 26th is Mesothelioma Awareness Day. Although my blog is about Lyme disease and confections, I am interested in helping anyone else, as I know how it feels to feels to want a disease to be recognized. Here is a bit of information about this rare disease:
– Mesothelioma is a form of cancer caused by exposure to asbestos.
– Asbestos was halted in the late 1970’s with a few exceptions, but still has an impact on the country even after 30 years. This toxic mineral is found in old homes, factories, and commercial buildings. It was once used in more than 3,000 consumer products such as toasters and hairdryers.
– Asbestos has been declared a “known human carcinogen”.
– US Navy Veterans who served in WWII as well as the Korean conflict have the highest rate of this disease.
– Mesothelioma is the number one occupational cancer in the United States.
– 2,000 to 3,000 cases are diagnosed every year, and 10,000 Americans will die each year due to asbestos related diseases, including lung cancer and Mesothelioma.
– 9 out of 10 cases are over the age of 60, and cases have increased four times after the 1980’s. Cases are expected to peak in 2016.
– Although there is no cure, the survival rates are improving as the research moves forward.
For more information please check out these websites. Remember, we are all looking for acceptance and awareness, it is so important to help others do the same! 🙂