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I want a patio set


SassyBetsy

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Do you ever feel that your life is just doc appointments? I am constantly scheduling and rescheduling or waiting to be released (lol) and I am going to docs all the time. I don't feel better. I don't get rehab. I am having horrible side effects from all the drugs. I wonder if I just didn't take them then I would feel better but I fear dying more than wanting to feel better. I don't have any PT never had OT. My therapy has been being at home and doing for myself when I don't have help and just walking around places.

I pay for walking too much though.

I was told I was going to recover and so disability was denied.

I have recovered some and i see it on good days but i have bad days when I can't read right and I am always so tired. The meds make me just nod off. I hate that.

I am impatient to feel better even if some things don't change.

Like I want to be pain free.

I want to be drug free again with just some lite pills but i am still on the hospital pills.

 

I am scared because the year mark is nearly here and so this is it then.

I have got out of the wheelchair and walked so that is amazingly fulfilling and I can now see good enough to polish my nails (just have hand tremors now) so yes reasons to celebrate. But I wanted to be perfectly fine again.

I am really ticked off at this feet thing and so tomorrow I am going to remind doc I have a bp drop when I stand so lets ditch some of this.

I have a head fungal thing with some amazing dandruff in my cute haircut so annoying and I spray my awesome leave in conditioner and fluff it through but the med shampoo doesn't smell at all so grateful but it isn't working either. I keep shedding. The bumps all over are not cancer they tell me so always good news but they don't say what next and my dermatologist appointment is months away.

 

Why can't you get an appointment in the same month you call for it? Are there really so many people and so few available rooms? Hey see me in the waiting room. Not like the paper thin walls give you HIPPA anyway. I hear it all folks. And I just want some relief here.

I have other problems besides stroke and I guess it contributes to this overwhelming stress. I dread the docs now anyway because I seem to have had the collection that didn't go to charm school or maybe even med school but I just can't stand going. I haven't found the one I know more frogs to kiss and all I want is some TLC but i will settle for a bit of cold competent care too. I don't want to do this thing anymore. I want to think about other things like how cute we made the place inside and now I need to shop for a patio set for outside and get a bit more flowers outside before the heat waves comes and ruin them. I want to do something else for a while besides this sick and tired feeling. I probably need a good BBQ steak for some iron strength. I want to go soak in a lake if I could talk someone one into taking me soon as we have some time. Ok I don't know but I think I will just take the dang walker into the water with me. I just want to be free again and not have this stupid life of misery. I want to be someplace that treats the whole person. That cancer center ad on TV sounds great but wait I have stroke and I just kinda noticed it isn't the gold card disease and I sorta get sent home like go get well on your own time thanks or come back when you are in diapers. In other words I am not getting treated at all at this fancydancy teaching hospital. I am giving it one more chance and then I am changing again. I am not one to linger around with a bad kissing frog.

 

I just want to have some fun in my life and sit on the patio and watch the birds. I need to browse around and see if I can find a soft weathered lightgreen iron patio set. like a french cafe outside and I need some little sunshade thing striped I think. I just want to think about other things besides pain and all this. When did I get like some old folk always thinking and talking about illness and doctors. I went to a bar dinner with a friend and I loved it I was youngish for a minute but it was horrible there with the shinynewred walker even though I love it. I felt damaged. there is that awful word. But I didn't care though because I people watched and we giggled over it and I was just out of my house. that is key. I don't want to even go to the support group stuff because I think I need to be in denial straight denial that anything is wrong with me or my life it is fine as it is thank you very much and let me just go live it please. Oh wait I am on drugs these dang pain and other meds that make the stroke residuals worse or do they keep me alive and well who knows even they don't apparently. Their biggest concern is the pain meds which seem to be the only ones working properly without sides.

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Thanks for making me cry! :)  I can so relate to your post! My 2 year stroke anniversary is coming up in August. I can only walk with an AFO and that is for about 4 minutes before I have to sit down. I have some movement with my arm/hand but it is not functional.  I have no sensation on my left side. I had OT and PT for almost a year, I just started drawing SSI because I am like this forever now. 4 different doctors have told me, I might improve a tiny bit, but it is what it is.

 

I don't have a lot of pain, thank God, if I keep up with my neurontin. I am not on any narcotics. but take a handful of other pills.

 

Your line about I just want to be free and not have this stupid life of misery is spot on! As well as the cancer remark, I know as well as you, the big C word is terrible, but the big S word is terrible for some of us also! I often wonder why I was left here.

 

I don't have any advice, other than it does get a little easier or the acceptance gets a little easier.  I wouldn't wish it on my worst enemy.

 

One question, the fungus on your head you wrote about, do you know what caused it? and how do you treat it?  I have something like that on my head and was wondering what the heck!!

 

Just know your blog post really touched me, thanks for sharing your true feelings

 

(((HUGS)))

 

Tina

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I want a patio set too. I don't have a backyard yet but I want a patio set. I want to be free too. Just open my arms and fly away. Stroke takes so much of you mentally. Just sucks you dry. I'm not in pain that much but when my right cheek starts hurting I think oh boy it's happening again. I just passed my 6th month anniversary and I was a mess. I do wish denial will stay as a good friend.

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Robin and Pam I cannot say that I know how you feel, I don't as I was a caregiver and my feelings are from that.  But I do know that trapped feeling you are both experiencing and the feeling that there is more to life.  (((hugs)))

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Thank you guys for listening and sharing. I feel so much pressure in my real life to appear strong and getting through this like a trooper and be positive yadayadayada. Fact is that some days I am not a saint and I scream to heaven please help me endure this please and I too wonder why I am here like this feeling so sorry for myself and so angry at the entire universe for this twist of fate. I feel like I was close to finishing some race in life and I fell with the finish line in sight watching others pass me and win.  yep time to get up and walk away and do something else. I know this and want this. I will accept it or not but I can't seem to do it silently coping gracefully like don't disturb anyone's peace of mind with a complaint.  So I am just saying it is nice to be able to vent where I know I am understood by someone somewhere maybe.

 

6 months is still early too and I did improve lots after that so hold onto hope.  I was walking better after that. I don't know what your probs are but you are still early in recovery too.

I hear that recovery goes on and on even after some time so I will hold onto hope in my denial too. I also have had terrible fear of  having another stroke too. Truth be known that still haunts me. 

 

Life is not guaranteed no warranty no exchanges. I wish I could be more brave and more more more. I don't feel successful as a survivor even. Still feelings of not good enough haunts me. I just am and so that is all.  I am in a wonderful yoga class and love the stretches but mostly meditation not religious thing just an aweness and awareness and attempt to have some peace. I am christian and prayer helps me too. I have lost what I thought was my meaning in life and scurrying around to find it again. It is here under my nose someplace.

 

Yes trapped is the word of the day. my definition of freedom is different now.

If you are able just get out and live live live and the rest will happen there will be love and friendships just get out and give give give is how I lived but now I feel alone and isolated and look around and see where did it go where are they now? Stroke isn't contagious is it? so bitter creeps in when I don't keep guard over my heart. I don't want to be this way. I know I can choose how to be but it is hard sometimes. I want to be a better person.  I want to relax mind body and soul and have a fun summer now not worried and weighed down by my feelings. I want to be light like angels with wings.

 

It helps so much when others understand. Thanks from the bottom of my heart. I hope you too may find your journey lighter because you can share too. I am always a willing listener too even though I talk too much.

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