I am home sick today… I woke up at 5 am with vomit in my mouth and ran for my pee slime covered toilet… next to my Charlie Bosephus’s litter box. Really an eye opener into the quality of my life .. but really things obviously have not changed that much. I literally laughed out loud typing that… and surely I will publish this.
I do not know how to bridge the gaps in my crazy story of a life… I last left off with I had started therapy… Im going to take one step further back and tell you about the time my “Fever of unknown origin” sent me to the ER… which then led me again to an infectious disease doctor… although I do not believe that is where my latest journey started… I believe wholeheartedly my journey started with CMV… a few years ago… and this is my second infectious disease doctor… It was in the beginning of march I went to his office… and I had been told I was the very first patient he had seen since arriving in the United States. So in he came… and started to question me about what had been going on… and I listed off for him the same ridiculous list of viruses I have been listing in previous posts… but shockingly… my fever had finally gone… as mysteriously as it had arrived 5 MONTHS PRIOR… and he looked at me and said. “So you are not sick now, I do not know what to do for you”… and guys… I lost it… I cried… this made this man extremely uncomfortable… so much so that he had to leave the room… but when he came back he was curious why I kept crying… and I told him that it was so awful… so awful that I was seeing a counselor over it.. that I was so tired… and my legs hurt so much… all the time… and I continued to cry… so he left the room again.
Then he did something. He hand wrote orders for a VERY specific blood test… that could only be given in a blood hospital… it was like a super secret blood hospital… but they wouldn’t do the test… because you see… I do not have aids… and security escorted me out of the special super secret agents of shield blood place. They sent me to another lab down the road who after an hour of calling around did the blood work required… blowing out a vein in my arm and spraying this young technician in blood making her look like a serial killer… it was gross… and then they didn’t refrigerate the blood like they were supposed too… and a week later I had to do it again.
30 days later this doctor… the first one to do something… called me… he said to me “I have found an immunologist that has agreed to take your case… he probably won’t be able to diagnose you… but he may be able to help you” i cried again and thanked him profusely… he told me that he had found a very serious problem in my blood work and I was very sick… his english was not perfect but he insisted that I was sick and if I felt sick, I needed to let myself be sick.
Two weeks later the Immunologist called and said he would be wasting my time bringing me in to see him… that I needed to go to the cancer hospital… as soon as possible… that I had an abundance of abnormal lymphocytes in my blood… and I needed to have a bone marrow biopsy… and be treated.
<cue the circus music> you can imagine what this did to our mental health. School ended and we took our annual trip to the lake… add 2 bouts of Hand Foot and Mouth and one VERY ugly bone marrow biopsy/harvesting and in the first week of june I sat in the Cancer Specialists Hematologists office for the results. I do not have Leukemia. The abnormal cells are not coming from my bone marrow.
<Cue the circus music again> July we celebrated birthdays. and another round of Hand Foot and Mouth.
Here we are in the first week of august, they have drawn blood again and I will see the immunologist finally in a few weeks when he has those results.
Today? Today I think I ate something bad last night for dinner, or have a quick coming and going stomach bug.
Small child got me a sprite and made me an egg before he went to work.
I called (okay texted) in sick.
I have not had a fever since March. Well not one of unknown origin at least… Hand Foot and Mouth brings one
I am still seeing the therapist, about once a month, to make sure I am not tanking mentally and emotionally.
I am slowly building my stamina up on energy… I am usually good for one outting a day… most days that is work… on the weekends… it is something a little more fun… and then I am on the couch or in bed other than that…. this last month I have been doing better… been up for a couple of outtings. Mr Amazing is doing all of the house work… grocery shopping… cooking. I would be completely lost without him.
I have asked my family in my home to be there for me … and they have… I have not reached out much beyond that other than a shoulder to cry on…. or usually scream my frustration into. and I have not been available for people reaching out to me for company or help. That is hard for me to swallow. But I have been honest about it. I am doing what I can. This is it.
Today I washed the puke out of my hair and blogged about it. This is progress. Not perfection.