Sometimes when I see something in the mail that doesn’t look like anything important and junk, I toss it without opening it. We all do it once in awhile. Apparently I threw away the details that a man would be stopping by to gather information from me. Oopsie.
Well, I got a knock on my door on Tuesday morning. “Hi, I am here to gather some information from you and conduct a survey.” I look at the name tag pinned to his shirt…. CDC. I replied, “Good morning, I don’t like you. I would LOVE to take your survey and share some words with you!” 🙂
An hour and a half later, my “brief survey” was complete. LOL
There was a lot of questions on the survey. Most included symptoms, any diagnoses, physical abilities, and a lot about insurance. I represented the Lyme community by sharing with him that the IDSA and CDC need to work together to revise their guidelines and discussed how much out of pocket expenses have been spent with this disease when the topic of insurance came up. I then told him thousands of people are completely debilitated because they cannot afford care, let alone find a doctor willing to treat them with their current guidelines.
I am sure my conversation likely won’t get passed along but it needed to be said. I could have continued on getting ready with my morning and said I was all set with taking his survey, but I feel like it was so important for someone like myself to talk about the topic and give him information. Maybe one day someone will listen. *Sigh*
After my interesting morning I was completely anxiety ridden because I was so behind. I called work and let them know why I was late, and they laughed and told me it was totally okay after giving my reason why. I somehow got everything done at work before my massage. I worked at the speed of light. 😉 With a few mistakes I must add but I got everything checked and fixed before I left.
It was also a juice cleanse day. I felt like shit. Absolute shit. I felt faint and began to have stomach issues. Nausea, cramping, and the juice cleanse just plain wanted out. Gross I know, but this is my reality.
I was very tight during my massage, so it was rather painful. My calves, shins, hips, and feet were probably the worst issues, so that is a lot to be painful in one day. The bottoms of my feet are leading me to believe that Bartonella is still very much an issue.
After my massage I headed over to see my friend at the salon and get my hair done. It was a lot for a crappy day but I needed change and a trim desperately, and of course I missed my friend as I haven’t seen her in a few weeks, which NEVER happens. It is kind of strawberry blondeish/golden shade now (rose gold is the term nowadays and is VERY in I may add 😉 ). I like it. It’s different for summer.
Although I was exhausted my other best friend came over in the evening. We have talked about doing something over the summer that we have never done before, to celebrate us, as we have each had our battles and have stuck it through together, and I am completely for it. It will be something special just for us. I just need to find an idea that I am capable of doing right now, and doesn’t cost a bunch of money. Hmm.. Ideas?
The following day I had yet another unexpected visitor.. my period. What the hell is that? I ended up having to make an emergency visit to the gas station to pick up tampons as I haven’t even thought of getting my period in months.
Work was somewhat stressful. It is the busiest week of the year as the Fourth of July people want all sorts of fish, fried clams, lobster, etc. etc. The guys will sure have their work cut out for them in the next few days! I at least get a little break because I need to wait for all the deliveries to be done until I get a stack of invoices to enter. Yay.
It was an extremely hot day. As you know I have not been doing well in the heat. I wanted to spend some time outdoors to at least get a little sun, but found myself even more lightheaded and myself and the dogs were definitely overheating.
In the evening we had a big thunderstorm. I was pretty happy about it, as it cooled outside out quite a bit and we definitely needed the rain. Dave’s Mom stopped by and brought over dinner. We sat at the kitchen table and I felt the wave of crappiness hit me, making me loopy and depersonalized but I was not as bad as I usually am so I kept my composure, so no one would even though I was having a hard time even sitting there.
The stomach pain came back and was excruciating. I could not find a comfortable position, and laying on my stomach in bed was out of the question. I have had the watery feeling you get when you are about to throw up since yesterday evening after dinner. Marinol has certainly been my best friend through this.
With Lyme and all the coinfections, it is very confusing to pinpoint what is wrong. I am concerned about my issues right now being due to endometriosis, what my specialist wanted to do the laparoscopic biopsy for, and food poisoning has crossed my mind as my juice cleanses are not pasteurized, and even though they are in a cooler when they are delivered it was hot as fuck outside. I at least can rule out c-diff as I was just tested for it. I have no friggin clue. All I do know is it brings out all my frustrations with being sick and angry in general.
I have been so crampy that it was been blurring my eyes and making me so dizzy and nauseas this morning that it has continued to be miserable. I didn’t even want to take my puppy out this morning, but I don’t really have a choice in the matter. Oh my god puppy please piss and take a shit! Please don’t pass out, please don’t pass out..
I still had to go to work. I hate being a grown up with bills and a mortgage sometimes. LOL It took awhile to get there however, as I had to turn around as I forgot my seizure meds. Oy Vey. At least I remembered them before it was too late…
I figured I would get some things done as I might take tomorrow off. I am not too sure yet as there is always something I can do in the office. My little town has a parade in the morning so it is literally a zoo and impossible to get through town, let alone the “crazies” come out and I honestly don’t want to try to drive in it. We’ll see.
To everyone, have a happy and safe 4th of July! I am hoping everything will keep at bay so I can at least go see the fireworks. Fingers crossed!!!