Claire Keane
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$LAYYYTER
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@la-lauren
Just got the results from my blood smear back. Trying not to freak out, but they want to do molecular studies for some additional things, including leukemia.
From my research and my other labs, I don’t think it’s likely, but the fact that they still want to rule it out anyway scares me.
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Navigating healthcare in the U.S. is a nightmare, but I can’t say that navigating it anywhere with chronic illness is particularly easy.
I really do feel like I’m in a race against time to get help for whatever this flare has become before losing my job. I know that FMLA can help temporarily, but I can’t be on it forever and getting in to different specialists takes months. I’m waiting 7 months for endocrinology and 4 months for gynecology.
If I knew that any one specialist could help me, I’d be semi-ok with the wait, but the primary care people I’ve seen are stumped. My white blood count has been chronically elevated for 10 years, and antibiotics don’t touch it. The ONE time I saw the hematologist, my blood count was normal, so it was dismissed. Like, universe, what even is that???
My most recent bloodwork was the most elevated it’s been though, and I’m struggling with narrow pulse pressure. I do have a cardiac stress test next Friday, so I am hoping something shows there if it is cardiac, though the heart monitor came back with “phenomenal” results, per the doctor.
I don’t want to lose my income, but quitting and lying around in bed for most of the day is historically the only way to quiet the flares.
I’m so frustrated.
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Dream come true, and my niece gets a cute book.
I did not get my hair fixed before today, so roots and all I go. Didn’t factor in that my hair would be so frizzy either. The humidity is wild today.
I tried to get a psychic reading from a highly rated person, but he said he couldn’t establish a good connection with me and to reach out to customer service for a refund for the three minutes he spoke to me.
Yes, I’ve gotten this desperate.
Life is just feeling hard right now.
also when fleetwood mac was like “can i handle the seasons of my life?”
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I’ve started adding 5 pound weights in each hand when I’m exercising to stop a blood sugar spike, and it was so sobering to hold them and realize I’ve lost over double what I’m holding. On my body, I feel like I haven’t lost much of anything. Holding the weights in my hands though? Surprisingly heavy.
I am expecting to be at the 30lb loss mark with my next weigh in. It’s been slow, but it’s been the easiest I’ve ever lost weight.
you think that you're so alone in the world then you read literature from hundreds of years ago and you realize that other people have always felt this way
D has been going into the office a few days a week since she’s back from medical leave. It is the only time I get away from her. This morning, I felt so emotional. I have been crying on and off all morning. Some of it is missing my grandma, wondering if she’d approve of my life. Some of it is being so done with yet another desk job and wondering if my grandma still just thinks I’m lazy. Some of it is the letter I mailed to my parents this weekend that explains why I do not take their calls.
A lot of it is just not knowing where to go from here, where I feel trapped because I’m part of a partnership and my decisions matter, and I can’t very well quit my job when she’s about to quit hers.
I feel so overwhelmed, and this morning, it is all coming out in tears. I don’t have separate friends to hang out with, and I feel weird calling to talk to friends when all I want is some time with friends without talking about any of this.
I feel like I’m underwater.
D and I discuss other people’s behavior frequently because it baffles us. We truly don’t think a lot of people have had a single fully formed thought judging by their actions.
Talking to my sister gave me one of those moments today.
I asked her if she has any autoimmune issues. She replied, “Diabetes and depression.” I explained that while diabetes can be autoimmune, hers is not, and depression is also not an autoimmune issue. She just giggled. Then she proceeded to tell me that while she was in surgery for something else, they biopsied her liver and told her she has a gluten sensitivity. First of all, that’s not possible, and I did search to make sure I wasn’t ignorant, but like…. Do you just make up shit and say whatever as though it’s fact???? Then she said she is going gluten free and buying whole wheat now. Whaaaaat?????? Do you understand what gluten is??? NO. The answer is NO.
And these family members are the ones who voted Trump into office. So like, makes sense, but…..
Not a single intelligent thought among them. And worse, they think it’s funny when I try to gently give them correct information.
😭😭😭😭
I had a follow-up appointment this morning, and the NP was so kind. Said she had autoimmune issues herself and understands the frustration of just trying to live your life with a body fighting you every step of the way.
She ordered additional labs and put in referrals to gynecology and rheumatology.
I feel like I’ve seen every specialist under the sun at this point.
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Viewing my life as something I chose before I was born is an interesting exercise. I’m going to continue exploring it.
Having a photo taken with a literal supermodel next weekend, and my hair looks terrible. I did have a hair appointment to fix it, but it got moved to a later date.
I hate that I care about this at all. It is so stupid, and it’s not like my hair is the deciding factor in whether I’ll look cute next to her (there is no universe where I will).
Trying to figure out what to do about it regardless.
