Day 5, Act 2

One thing I will say about all of the chaos surrounding MC’s induction into the world of illness, is that I haven’t had the time or the opportunity to think about what’s going on with my problems.  I’m not allowed to say “I pissed straight blood this morning – I think it’s time to lay off of the *insert random food sensitivity here*”, because at least I’m not having heart surgery!

Yesterday as the Mister was coming out of sedation, his Mom was talking about how much time they spent with him at Children’s Hospital when he was a kid, yet she brags about how healthy he was – so this diagnosis is a huge shock and it’s not possibly familial because he is such a strong, healthy person.  MC had to wait to get most of his vaccinations until he was already in SK because I was immunocompromised and he didn’t want to risk exposing me to something if he got a mild form of anthrax, or whatever else they wanted to stick him with, so again, this is in some way because of me.  He looked at me, then looked at her and said, “I think Kara has been in the hospital way longer, and all by her lonesome…”  She started counting and she was at was almost a month total.  A whole 30 days!  By the time he came back to the US, I had my count figured out to be 48 days, not including appointments and diagnostic procedures.  That doesn’t include this year, which easily doubles that number.  I didn’t say any of that, because it’s not a fucking competition.  I did say I’m something of a celebrity on the internal medicine floor.  “That’s not something you should be proud of.”  No shit.  It’s called HUMOR.

My health concerns aren’t a factor in any of this.  When I told her I have dialysis tomorrow and I can catch a ride with them to get’er’done while MC takes care of his pre-op stuff, she asked if I could cancel or reschedule, because I REALLY need to be there WITH them.  Okay, when?  The next week and a half is booked solid with other stuff. I also have an appointment with my GP on Friday, which made her upset too.  We need to put all of our energy and focus on him now – we don’t have time to take care of me.  If I take care of me now, my demands are much lower than they will be if I put shit off.  A total of 4 hours this week, versus many hours in the ER, transfer, and a 3-7 day hospitalization.  I’m not good at the maths, but it looks like my way is better.

In my corner of the health world, it’s not looking so good.  I’m afraid my kidney function has declined a bit because I’m waking up with peripheral edema, and the reappearance of gross hematuria is never a good thing.  This may mean that I’ll have to go for dialysis more often and have fluid restrictions, which is most decidedly a huge inconvenience for everyone.  My bowels are protesting over the small amounts of foods that I am eating, and I’m terrified of starting the steroids I was supposed to begin two weeks ago out of fear of actually murdering someone or going legitimately psychotic.  The benefits are many, but the side effects are too severe.  I may call to set up my first remicade infusion after MC’s surgery just to make sure he’s taken care of in case I have a reaction to it.  I’d prefer this happen while he’s in the hospital, rather than his parents having to deal with me and take care of him at the same time.  I’m keeping all of my digits crossed that I can manage to avoid a health crisis while they’re here, because I think I might be more inclined to give up the ghost than I would be otherwise.  I like to think a big portion of staying alive when you’re critically ill is determined by how much fight you’ve got in you.  I’m running on empty.  If I saw the light at the end of the tunnel, I’d take off running towards it.

I jacked up my back while mopping last week.  My magical ice/drug combo seemed to take the edge off until I cleaned two bathrooms.  Nothing is helping now (which is a small part of the reason I’m not sleeping – most of it being anxiety) and my nethers went numb.  I got it good.  That fucker is inflaaaaaaamed.  I had a small problem with ‘holding it’ while walking through the hospital yesterday but was able to quickly remedy the situation by ducking into the nearest restroom.  Thank you Crohn’s for teaching me to never leave the house without spare underwear.  And you know Harpy had something to say about it.

Oh, yeah, I had an oophorectomy about three weeks ago and I’m supposed to connect with my GYN soon, but forget that.  Forget me.  We’re not supposed to focus on that.  (Fuck that)

Part One

 Edit: We had a “family” intervention after dinner.  MC stopped by the house before class to change into normal person clothes and found me crying in the dark.  I explained why and apologized for being so damn sensitive and his puppy face only made me cry harder.  He apparently reprimanded Harpy when he got home and called a family meeting.  It ended with a group hug.  Those are some wide people.  Thank goodness for my ridiculously long arms.


13 thoughts on “Day 5, Act 2

  1. I’m going to say it and I don’t care. I love you!!! You make me laugh. I’m not sure what an oophorectomy is but I can relate to everything you go through. How could she possibly ask you to skip dialysis?!!! Is that even an option? My dad has to go 3 times a week for 4 hours each time or he will die. There is no skipping. They can move his days around if he has to have surgery but only in an emergency situation. When I was in Florida at an outside mall with my Aunt we walked by a fountain. Of course this set off my pee reactor. I scrambled to find a public restroom. This is a part of Florida where almost ALL of the elderly go to retire but for some reason there were hardly any toilets. When I finally find one I was couldn’t get the door to stay shut and that was it. I started to go, said f*ck the door and salvaged as much of my pants as I could. I threw away the underwear and used the hand dryer for my pants. They weren’t too bad. I’m 43!!! Do you ever have hand or leg cramping after dialysis? I’ve been going crazier trying to find something for my dad. Tonic water helps a little but not much. I often scream in my head at everyone in my family (IT ISN’T A CONTEST!) because they seem to want to make it one. My sister boasted this morning how she “overcame” Conversion Disorder instead of using it as an excuse. It took all of my willpower not to say or do something I would regret forever. One more thing. Every single muscle in my legs hurt from cleaning the entire downstairs bathroom with first a sponge then a toothbrush. I was so proud of myself. My dad never noticed and left a little something on the edge of the toilet seat because he doesn’t wear his glasses in the bathroom. When I saw it I cried. I’ll also admit that I made CVS give me the BRAND NAME of one of my medications and the difference is a big one. Other people might not like it but I’m not as irritable. Good luck! I have a stent change coming the end of September. Is it wrong to say I’m looking forward to the anesthesia? Just a few hours peace. Sorry for the ramble.

    Liked by 2 people

    • The FDA and the medical and insurance industries have tried very hard to convince patients that generics work as well as brand name drugs. But I don’t think that’s true. I mean, it can be true with some drugs, but not all. I’m not sure how patients are supposed to figure it all out, except through experience. I’ve taken both brand and generic of the same drugs and I didn’t think they all worked the same. (Going from private, company-provided insurance to Medicare is an educational experience.)

      The nice thing about anesthesia are the drugs they give you along with the anesthesia, sometimes including a muscle relaxer and painkiller. And those effects can last for hours or even days. Enjoy. πŸ™‚

      Liked by 2 people

      • I’m a research junkie. Having Celiac Disease, Conversion Disorder, Bilateral Ureteral Thickening, Bipolar Disorder, and host of other things that Doctors are not fully up to date on I have to be my own advocate. When I investigated Generic medications and found out that they are NOT regulated the same way as the Brand name by the FDA I was shocked. Half of the generics I was taking contained gluten as a filler. The company doesn’t have to tell you that. They also break down in the bloodstream differently than brand name drugs. Another shocker. I have fought with Medicare often to get brand names covered. Eventually they have. I have trouble with some anesthesia because I have habit of not wanting to come out of it. It’s a little scary. They actually have the most success with Belladonna and another old school plant based narcotic. It’s kind of weird and scary. Having to have anesthesia every 4 months or so isn’t great for the old brain. lol

        Liked by 2 people

    • Aw, thank you D! I’m happy when I can make someone laugh! It’s always nice to have people to commiserate with too.

      No, dialysis is absolutely not optional. I tried to explain this, but I’m not her precious child, so who cares? What can I say….family sucks. I don’t know if it’s the dialysis or the neuropathy that causes the cramps/spasms. I’m sure it’s a combination of the two. It’s not as bad as it used to be, and I haven’t been doing much outside of making sure I stay hydrated. The tonic water definitely does help – I drank that before I knew I had CKD because the cramps would wake me up crying. Only problem is that it made my hypoglycemia worse if I didn’t eat something along with it.

      Oh man, men are such disgusting beasts. I don’t even know why I bothered cleaning the master bath. It’s already gross again.

      Haha! Nope, nothing wrong with that. I’m a fan of anesthesia too. All except the week following. That’s a special kind of funk. I decided a while ago that anesthesiologists are my favorite kind of doctors because they’re the only ones who don’t hurt me. Ha! I hope the procedure goes well for you and you’re always welcome to ramble here. It’s what I do, so it’s only fair. πŸ™‚

      Liked by 2 people

      • Thank you! My dad’s hands will suddenly turn into lobster claws in the late afternoon. They make him restrict his fluids. I am not a fan of the place he has to go to. They have infiltrated his fistula so many times I’ve lost count. Not to mention they “punish” him if he speaks up. I’m not allowed near there. I’ve said it before, I can’t stick up for myself but I will hurt someone for my family. (Mostly my dad and nephews).

        Liked by 1 person

        • I get that! I’m getting a kick out of fighting for my husband, but I wouldn’t dare do it for myself because it gets me sent to behavioral health. I love double standards, don’t you? /Buncha assholes

          Liked by 2 people

          • If my sister tells me one more time that I need to be in the “Hospital” her word for Mental Institution, we aren’t going to have a relationship anymore. She knows it’s a fear for me but says it or threatens me with it anyway. We are not talking now and I hate it.

            Liked by 1 person

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