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missaf

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Blog Entries posted by missaf

  1. missaf
    I've decided to keep my blog about Cushing's here rather than where I normally keep it.
     
    Today I am feeling warm and energetic. I had lots of heart-pounding in my head -- is that hypertension? My hump has ached today, and in turn, my neck aches. I didn't get dizzy when standing today that I noticed, but I did have lots of trouble getting up off the floot.
     
    I checked my stretch marks today and they are mean and red, some purple, so started a 24 hour at 8pm. All my salivaries are done, so I'm hoping the first 6 are low to medium, and the last two are sky high *crosses fingers*
     
    I'm wondering today if I don't test positive for CD, perhaps the tumor might be causing the hypopit Dr. F thinks I might have?
     
    If I feel this high tomorrow, I'm heading to the PCP's office to have her check my blood pressure.
     
    This is all so confusing and overwhelming. The closer surgery comes, the more scared I get. I'm a single mom with a dad with advanced heart disease and probable CD himself (He's got ALL the classic S&S!). I have no one that could go with me to MDA, but I want to trust IMCC with my care. UGH! This is the worst part of being single! I don't want to go alone after the last time I was in the hospital and was denied my pain meds and I was in so much pain I couldn't advocate for myself.
     
    I'm scared to go without someone on my side after my BFF's mom died of AI and infections. I'm scared of the aftercare without maybe a Visiting nurse or hospice or something. I'm scared of the bills for going to Texas for the hospital hotel! I'm on disability and barely making it as is!
     
    One day at a time works for a while, but some days I just have to unload! This worry and concern is killing me!
     
    I haven't emailed Dr. F yet -- I'm waiting for all of my Cushing's workup to come back before I do.
     
    AHHHHH! Make this roller coaster stop.
  2. missaf
    Last night was another one of those nights that I got ravenously hungry after eating well all day. I checked my stretch marks (bright red), and my pulse was pounding in my ears very loudly. I was craving carbs like I was addicted to them, and it was most uncontrollable. I couldn't fall asleep until 5am, and I had gotten up at 7am the day before! I felt so wired, even though my body felt exhausted. I pray that these have been highs and my testing will show it!
     
    Today, out of nowhere I have a raging yeast infection. The past five months -- that I've been paying attention -- this is the fifth one! They always seem to go away after my period starts -- maybe because the cortisol flood stops??
     
    My hospital won't do my midnight cortisols. It looks like I'm going to have to drive 45 minutes to the nearest one that will do it. Ugh. I am going to go by there today and ask.
  3. missaf
    Brand new stretch marks yesterday and today. *sigh*
     
    The older stretch marks have been red the past few days, the new ones are purple.
     
    My pulse is pounding in my ears.
     
    The only things that hurt are my knee and my hump.
     
    I can't get these tests in soon enough.
     
    I've been wondering a lot about MDA and how I'm going to do that alone. Does the Rotary House have a financial aid program?
  4. missaf
    I've been coming off of Dexamethasone all week. It has not been fun at all. I now understand what lows truly feel like and if it happens post-op, I'm going for the hydro! I never threw up, but I came close. Lots of sleep helped, but when I woke up and did stuff, it came right back, so back to bed I went!
     
    My menstrual cycles are always screwed up. The best they were was right after I had my son, now they're back to normal-weirdness. My cycle this month was 29 days. Last month it was 24, the month before it was 23. ODD. So now I'm PMSing on top of the low from Dex. Talk about irritable!
     
    I am struggling to have patience with everyone in my life right now. With the people who want to help, with the people who can't seem to understand it's not a quick recovery, with the people who want to make my life better.
     
    My dad announced he wants to buy us a house to move into. I had to explain to him that would be lovely, but I would either have to move in NOW with the essentials and do the rest in 9 months or so, or we'd have to wait until later. I understand the market is good and he's got his lender ready to go, but just be aware of the fact moving is stressful and I CAN'T be stressed out after surgery!!
     
    So I'm feeling the home buying rush. I want it in town, I don't want to yank up my son out of his support system. Not when Mom's flying far away for brain surgery. I want something cozy, not too big to handle. He wants acres of fruit tress and chickens. I'm starting to smell the "It isn't gonna work" routine coming soon.
     
    It sure would be nice to live in a place where I'm not stressing about the people beneath me blaring their music. I can't tell them to stop or face brutal retaliation, and I'm already feeling an AI episode coming on when I try and convince myself to call the cops to get them to be civil. But in AI your head pounds and your hurt all over and you feel icky -- Rap and Hip hop at 150 decibels, under your feet? Not good.
     
    I wish I could live in a place I could let my son play. With 3 guys from Megan's Law in my apartment complex living here -- forget it. He doesn't own a bike because I don't want him snatched off it!
     
    Oh I need to move, I just wish it wasn't all right now! I'm totally freaked out about this. I'm mostly packed and reayd to go now anyway, so let's please make it happen and just get it over with!
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