It SUCKED!!!!!

I’m kinda just venting but I want this written down so that I never forget this experience.  So, being in the hospital for a month was the absolute most horrible, terrible, awful experience that I think I could have possibly had.  Lucky me!  Maybe I wouldn’t have absolutely hated it so entirely much if I was able bodied and could speak.  But I wasn’t/couldn’t.  I had to be taken to the bathroom, I had to be washed and fed.  I got a migraine every other day that would make me puke.  Oh and I was bald.  Oh and I had a severe intention tremor so my whole body shook terribly anytime I moved at all.  And on top of all of that, I couldn’t speak so I couldn’t articulate what I was feeling and on the inside, I was cognitively OK.  I didn’t have any feelings of taking a break and getting to rest a bit, no I didn’t have those feelings AT ALL!  It was AWFUL!  I remember thinking back in the old days, that needing to be in the hospital for a few days would be relaxing and a nice break.  OH MY GOD NO.  ONLY a stroke survivor will get this, NO ONE else can come close to understanding this experience.  If you ever have the good fortune of being hospitalized, I hope that your experience isn’t as immensely horrific as mine was.

Categories: Brain stuff, Stroke stuff

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18 replies

  1. And I’m bald 24×7 on at least 60% of my head. Why do you think I compensated by growing a beard at age 21? Not to diminish your suckiness.

  2. Sucked is an understatement. It was a complete nightmare, and my head was only shaved a tiny piece, nobody would notice. I have long hair that covered the incision. Hence, I have “looked good” since about a week out. I’m not sure thats a blessing.

    • Yes, you’re right, sucked is a huge understatement. Nightmare is better but I don’t think there’s a word that exists that can come close to describing that hell.

    • It sucked for me because I didn’t know when they’d “let” me go home; nothing pisses me off as much as having someone else in charge of MY life, plus time in there wasn’t helping my recovery as far as I could see, just prolonging my dependence and homesickness. As for my looks, I didn’t give a shit; in fact , I kind of liked living in sweats, hardly ever showering, no eye makeup, and not having to care that I had bed head.

  3. My cognition was really messed up, but I was acutely aware of some of the issues. I was frightened when I got up the first time and couldn’t remember how to tie my shoes, or tell time. Meanwhile I was corresponding with the doctors regarding my plan of care, and up the insurance company’s ass to approve my rehab. Stroke is crazy, what I lost cognitively and what I kept was surprising.

  4. All of we cerebellar stroke victims should share our experiences as Amy has.

    My story is 5 days in acute care hospital 8 months ago, where my main problems were (and are) vertigo, ataxia and diplopia. I was mostly bedridden. First time they tried to put me in a wheelchair the world started spinning again & I screamed that I was falling.
    So back to bed.

    After 5 days they decided I was ready for rehab & stretcher-ferried me to a HealthSouth rehab hospital. It took me 2 days to figure out that no way could I perform 3 hrs of rehab 5 days a week. I was much too dizzy. So I had them transport me to a skilled nursing facility where I spent the next 7 weeks. There I phased into a wheelchair and dining room meals, and gentler and kinder rehab. They booted me out (this was via Medicare) in mid-December. I’ve been living at home ever since, with a catsitter to care care of my last joy in life (became a widower 3 1/2 yrs. ago) and biweekly caregiver, 3 hrs biweekly.

    I get my groceries delivered (thank god for Safeway, no one else does) plus my kind frieds and neighbors getting me specialties. I doubt I’ll ever drive again although the fact that Amy managed that is encouraging.

    So we’ll see how things work out. As mentioned I walk 3-4 miles a day (teeter is a better word).

    I still use my wheelchair most of the time inside the house, and vertigo is my main problem. I plan on more outpatient phys. therapy soon.

    • You’re not even a year out. Things are going to be drastically different a year or 2 from now.

    • Rudy, I am so sorry you are still dizzy. That was probably one of the scariest symptoms for Zack, too. His finally subsided about a month ago seemingly for good. I agree with Amy, I really think it will go away. I will be praying for you that the swelling ainaides more rapidly and that with it, the dizziness will be gone, too. So sorry.

      • Thanks for your kind words, Brooke.

        How long did it take for Zack’s vertigo to disappear? So happy to hear it finally did.

        • Rudy, Zack was blessed that the vertigo was one of his first symptoms to go away. It went off and on for a while and then the first week he was in rehab he had to really fight through it. Then, one day he woke up and it was gone and it hasn’t come back since…Once his swelling was “resolved” according the MRI, which just means that the acute phase is over, it took about a month for it to go away completely. Does yours subside at all? Zack didn’t have a stroke..he had cereballitis which is inflammation in the cerebellum…happens for various reasons. Zack’s reason is still a mystery. lovely, right!? sarcasm. Praying for you, friend!

    • Also, Zack is probably quite a long ways away from walking. He has severe ataxia and his hips are suuuper wacky. He also has many visual deficits as he struggled with double vision and nystagmus (both have gotten better), his fine motor control is terrible, and many other issues. All that to say, everyone is different, but we can all glean encouragement through one an others successes and encourage one another through the hardships. So, praise God you’re walking. Now…let’s see the vertigo go! And I am sure with every “teeter” your body is learning more and more how to function. bless you!!

      • Thank you for your good words and wishes, Brooke. Yes, we must all be conscious of the fact that time will bring improvements, even though Amy is right in that some effects will never disappear completely. I in turn wish for the best for Zach. I feel especially badly for the younger so afflicted but take heart in that youth also means stronger, more resilient and faster-healing bodies.

  5. Yep. The hospital was definitely horrific. Zack was in for a total of 7 wks. though, I will say that the nurses and doctors at Stanford were amazing, I felt like family with them by the time we were out. I even bake them cookies and bought one of his doctors tickets to the zoo for his whole family. He called me later that day to personally thank me… What doctor does that? But it was SO hard for Z to stay at the acute rehab hospital because all he wanted to do after nearly two months was go home. He didn’t care (at times) that he really needed therapy and going home would stall him. He definitely had some cognition issues now, lookin back (and still does)… But really hard to recognize since he stills knows we tone and has a memory like a steel trap. I think he also has a mild case of pseudo bulbar affect. And he is really flat and has no mannerisms while talking. Thank God, he is gettin better every day and the place he is at now is amazing. Everyone with a brain injury should get rehabbed at a place like this. Brain injury survivors deserve it… For Heven’s sake! But insurance sucks. Anyone, I’ve covered enough topics already and I don’t want to get ranting on that one.

    • YES insurance SUCKS. I sure didn’t feel like family at the hospital. I guess I’m not the one to judge that though, but I’m pretty sure my parents weren’t thrilled with the care I received. I’m glad the new place Zack is at is good!!

    • Brooke,
      I had the flat affect, monotone speech for a long time. I hated it, its just not me. I was a very expressive, hands n face Italian communicator. I previously did a ton of public speaking. I was worried I would be ” stuck” that way forever. How was anyone going to teach me how to be me again??? The things that helped me the most with inflection, prosidy, and expressive language was:
      1. Reading children’s books aloud. My son was 2at the time so book reading was for him and I.
      2. Singing. Amy has bogged about it. I never had aphasia, so it wasn’t for that for me. It was about practicing different tones.
      I did a lot of the “warming up”exercises. You can find examples online on learn to sing websites. “Do ray mi fa so la ti do”. I am a horrible singer, but it wasn’t about the singing. It was about practicing the sounds and moving through them quickly.
      Both of those things helped me return very closely to my baseline. When I’m super exhausted I’m still kinda flat, but I try to stay rested…its my best chance at being “normal”.

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