It feels like forever which is almost 5 months of waiting for outpatient PT at the hospital rehab center at the same hospital I was in for two weeks with the stroke. The delay is riidiculous but what can you do? They sent me home with a therapist coming to my home to give me PT rather than put me in the rehab center for some policy reason and the first week I was home and the first time the home PT person came he said I needed vestibular therapy which he couldn't provide. I said the PT therapist in the hospital said it was vestibular so I wonder why they sent me home therapy when I need outpatient. So then we went on the road to get the outpatient. The insurance wanted me to go to some other place that didn't have a vestibular therapist and they said they wouldn't take me. So then it just didn't happen. I had to file a complaint and then they said oh yeah we approved it all just tell us where you want to go and I did and it took another couple of months for them to coordinate the endless approval paperwork stuff and then to finally squeeze me into an appointment after another evaluation to see if I need vestibular therapy. I wish the insurance company could have successfully willed away my need for vestibular therapy because it certainly seemed they tried hard but alas it was not to be. I am finally going but not the twice a week they suggested because I am told that they are overbooked as it is and squeezing me in once per week in a particular time slot so take it or leave it. When I was in the hospital they said that I needed to be able to do 3 hours of therapy per day and then they said I was too functioning to go. So I don't know if I was too weak or too strong but I didn't get the super therapy treatment. I asked what the difference would be between the inpatient and the outpatient therapy and I expected them to say time spent in therapy doing this or that but the physical therapist said well inpatient is like a hotel that has to be paid for and outpatient you go home. LOL sorry perhaps it is just me but the word "inpatient" doesn't immediately associate with "hotel" for me, but just give me a minute. Ok so my hospital did have good food. Ok nice sheets. It stops there. Anyway I have worried over the missed window of opportunity that I may have benefited from intensive therapy. The docs say it isn't true and that the brain does what it does with or without therapy. What else can they say? There is not enough vestibular therapists around and therapy is a rare commodity around here then? I hope it was worth the wait since I am not getting the hotel version.

I also didn't realize I could get some in home services. Wow. I left my hospital pretty ignorant of what kind of services are available out in the community like access to public transportation on a little shuttle that comes right to my doorstep. I just found out and so I gave the paperwork to my docs and now I play leave the reminder call game trying to get them to fill out forms. So far I have marked off 30 days of waiting and weekly calls. I am now probably marked as a nuisance but hey I have nothing but time on my hands now so I keep calling. I had a case manager for a minute in the hospital and when I left I called her and she said she just worked for while in the hospital and I said well what about for things that should have been done while I was in the hospital? Is it too late for those things now? The answer was a curt "yes." I have learned about things online or from waiting room chats with other people.

Otherwise I am hopeful that therapy is the magic I need. I am in such pain and some is probably from this swelling in my legs and in my feet. I have been hospitalized for and all the tests come back good and the doc says it is the meds but he doesn't change them. In the meantime I have ankles the size of my thighs almost and my feet look and feel like they will explode at any moment. The doc said it isn't so bad while I explain that I had to buy these adorable shoes I am wearing in a size larger than normal to get out of slippers. They tell me that most of my meds cause swelling. Joy. So which one are they going to change first? So far in a couple of months they just listen to me complain about my swollen body and then have the nerve to remind me to watch my weight because I have put on pounds. Hello? I am a spongebob right now with a full load and what about this weight thing? My feet look like flintstone feet. There are swollen lumpy spots on my feet that are not normal. I don't know what else to do because I am going to the docs and the hospital and they give me a diuretic that doesn't work and then nothing. Do they not know what else to do or am I not complaining enough yet? I hope the therapist will have some suggestions or can raise some alarm to get them to do something. I soak my feet for some relief but that isn't doing anything for more than a minute. Everyone that looks at me says I am swollen, legs, feet, belly, face too but not the arms. I have asked to see a cardiologist but here we go again with the referrals game so good luck with that right. I may get one after the holidays maybe. The wheels move so slow. Ok as drugged as I am on Gaba and Norco 10s and I still feel like my feet are going to explode.

I am still making it to class and it is unbelievable to me that I am able to do it. I worry that I won't be able to continue especially since I am on so much meds now. Speaking of meds as I keep taking more I worry about tolerance or is the pain really increasing over time? I tried to wean off the meds and it hurts so bad. So I need the meds and I don't believe in suffering. I want to keep on with finishing my dissertation and finish school. I had my stroke finals week but I returned a month and a half later and took the finals I missed and started in summer school. Now I am in the fall session and taking lighter load of classes in the middle of all this pain, pain meds, and physical things going on like weak and numb right side, vertigo, dizziness, and not walking or driving. I want my normal life back so I just sort of pretended I am not a stroke victim and just carried on. I was in denial and perhaps I still am and what is wrong with that if I can pull it off. I couldn't read right so I got some prism glasses which help off and on. When I am fatigued it will start in the eyes first. I read all I could in the hospital and when I came home. Reading is my life so I had to do it. I hope it helped. I also wrote weird in the hospital but I started a diary and I wrote in it constantly. I can see how my handwriting evolved back to normal almost but not quite the lovely script I had when young but it is better than the scrawling scratch after the stroke. I was really upset at the loss of my handwriting which is silly eh since I can't walk either. In the hospital I couldn't sit up either. I leaned to the side without being aware of it. I had to be propped with a pillow but that didn't last. I had trouble when i first came home but I kept sitting in a chair and on the computer reading and typing and then one day I didn't need a pillow. I can sit up on my own and balance now. I wish I could walk up and down my stairs and i am impatient for that to be something I can say is accomplished. When I woke in the hospital not walking or sitting up straight it was a shock. I came in with symptoms of listing to the left when I was walking. The ambulance came and I was admitted but I was not given that magic stroke medicine but I was put in ICU and then I was in a room. I guess I slept a whole day away in the room because the nurse came in and said she hadn't heard a peep from me to use the restroom and I slept through them coming in to do vitals. So I got up hungry of course. And then there I was not sitting up right and double vision not tracking couldn't look at a face even. That happens now when I get emotional. So I have improved. I am grateful but I want more.

The emotional is the worst part of all. At first every little thing made me cry. I would be confused and cry. It still happens but not like the early days. No one was very understanding of the fact that I was in an alien body that didn't walk or sit up and was numb on one side as if a line had been drawn down the middle head to toe. And I was looking at a world that was spinning most of the time and I couldn't stand without falling to the left or when I did stand I would just get close to the bed to sit down and I would fall to the left even though I wasn't thinking of sitting yet. I would look to the left and just fall to the left. I was not the master of my own body. My vision made it much worse and still is contributing to the horror of this experience. if only I could see right and not be dizzy. When something is funny it is unusually funny to me and it physically hurts and the same is sad things. My emotional regulation is off and it physically hurts in the gut and head when I feel strong emotions. I can't handle the little bumps I usually handled. Forget about big ticket stress because I am unglued and sob. I sob when I think of how much I love my family and I sob when they screw up my prescription once again. Ok then they say this is normal post stroke and for my stroke location but hey no one in the rest of the real world knows this and I look like I just went bonkers poor dear. OR that I am some unstable crazy because I am constantly advocating for myself and that usually reduces me to tears but hey why can't they get it right? I had some help in the beginning but who wants to deal with this at the 5 month mark we are still dealing with insurance authorizations, appointment screw ups and this seems just to be a way of life in the medical world. They got sick of it. I can't escape it though. I often bargain and say look if you just let me walk and drive again and give me some other illness that at least I would have some control over my life and to be able to see so I can at least deal with the problems. All problems are overwhelming. I have someone in the insurance co and she is helpful sometimes.. I hear that all social workers are just over stretched and so there isn't much help really. My family helps but they have lives and mine is a bore now with the same problems over and over and it isn't even half a year and we are all screaming Uncle!

Ok so not all days are bad and maybe in my next blog I will be in a cheeryho mood. Right now I am just feeling appreciation for the pain and breathing through the experience of loss and disappointment and owning it because I have the right to acknowledge the unwanted changes in my life and own body. How violated I feel that my body has been taken away from me. I am not the same and yet I cling onto what remains and try and keep my life and identity. I don't want to learn any profound life lessons right now, I want to walk again but I guess that as I journey through this recovery or acceptance phase that I will personally grow if I can shut up and listen to my inner self for a minute. I am angry. I am so mad at all I lost and I miss all I had even though I complained ...how I wish to go back to every single bit I complained about before. And how I fear I will be saying that about this time when the next stroke sneaks up and robs me again. I keep thinking of the day before it happened. I was at a mall and walking. I was with my daughter and we got starbucks and carried shopping bags of some really lucky sales findings and we sat at the water fountain enjoying the nice day. I remember dodging the other shoppers and riding the escalator. Walking is such a joy. Carrying a purse on your shoulder or arm and it isn't the same holding it in a wheelchair. I have clothes made to walk in. the way the fabric moves, the cut or lace on a shirt with scarf edges. Shoes. These feet may never wear delicate straps again. Right now I wish I could wear my tennies. Oh that wonderful day the time before the stroke. I have had nice days since then but not really. I have ok moments when it doesnt matter but I have awful moments when I cry and rage and beg and bargain. I don't think I am out of denial that this is even happening. Maybe that is good. maybe I will pretend to be normal and carry on as if I was and wouldn't it be great if I could master that. But we will see if it comes crashing down. Reality.

Well my hands hurt from typing so much. Talking is the only thing left. I have never blogged before. I have done plenty of diary stuff so it shouldn't be so bad but this is hopefully for someone else besides me but I really need the support because I don't know how to do this really. What has ever prepared me for this? maybe someone else knows. I am lost in a foreign land and everything is strange and frightening and I don't like it. I want to find my way home again but I have a feeling I will never get back to Kansas or find Toto again.