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Wanting my new Shoes to walk in.







 So today My Doc said right lung sounds like it is not filling up all the way prob due to the edema problem. This year I am really suffering with edema stuff. So up diuretics and hope kidneys still function well in 2 weeks. Then it took me 4 hours to be transported home. The man who dropped me off is a bully. Everyone at the home heard him telling my cna that in 10 minutes he would leave without me. Well I was waiting for help getting in my wheel chair and hang my bag on it. I have a tote I got in the gift store window with matching cosmetic bags and a contrasting scarf on it. I always have it along. But today I failed to bring my charger and my tablet. I failed to put my supportive boot on my foot in the rush to leave. All of the drivers usually wait until I am actually late...it has happened. No one left. But this one was loud. I wanted to leave a friend a pack of cards on my way out. I did because I had that time. Then he went in the busy street loading me instead of the safer parking lot. I was afraid but he said he was in a hurry and parking there was easy. He was quick and rough. I said the belt was too high up I will slip under. There was no over the shoulder. I questioned him about it. He said I needed to relax and be quiet. I did...I called my insurance to make complaint on this driver and this driving company because he was arguing at me for stuff even saying I was not nice to my cna...oh the one I rushed for his sake?? He said I was not a nice person. So I just called someone to make sure he did not pick me up. He got lost...took me to a place way out of the way. LOL!!! He called dispatch saying I refused to tell him the right address. Well it sounded like it but who was listening. I told it to him...while the rep was on phone hearing it all. I could hear her apologize for what was going on but then we got on the right Road and we were there and so I needed him to bring me inside wheel me in and he kept saying he didn't have time to bring me in and I said what are you going to do leave me outside the door and he said that's all he had to do so there was a valet parking there in the valet guy was listening all this so the guy ended up Wheeling me into my doctors check in place like he was supposed to just because other people were there looking at it and he says okay here I said this is fine and he just left not have a good day. So I continue to talk with the insurance lady and she apologized over and over and said that that was really so unprofessional and that she did not want me to be alone with him so she had stayed on the line with me and I appreciate it so much because she could hear all that is going on and I think that the guy was sort of oblivious to it I think he thought that I was just talking to a friend and maybe because I don't think he knew that I was making a report. So then after my appointment was over I needed to go over and get a chest x-ray so I asked the office girls if she could call so that my driving company could take me right over because on the paperwork and also what the doctor had verbally told me was that I was to go directly over to get a chest x-ray. So then the transportation company was saying no there was no same-day appointments and I said ask to speak to a supervisor because if it's urgent then they will allow it so here we go. So they want three days notice and that's fine but it's not always possible. So anyway they said they would do it so I sat waiting. So here comes that driver that had been such a nasty bully and got me lost and I did not want to get in the same vehicle with him again and I said no no no no I'm not going with you. So he left and I saw him drive away and I told the girl at the desk need to get another driver to come out and she was just too busy so I grabbed my phone and I called and tried to make the reservation myself and I said why did you send out that driver when I was assured that I would not have to go with that driver again. So anyway all it did was punish me because they said that it would be an hour or two before somebody could come and take me across the street to the Radiology. If only somebody could have just reeled me across the street. So I sat there for not 1 not 2 not 3 but 4 hours. I kept calling are the people in the office ended up giving me a bottle of juice and a bag of chips so I had a lunch. I had asked someone if they are going on their lunch break if I could give the money and they could bring you back something but they made an excuse and so I figured that wasn't allowed. Unfortunately when it's first it happened one of the girls at the desk at offered to drive me over but I said no because that was against the rules didn't want to put her in jeopardy so she was really nice but I just didn't think that that was something that she needed to do and I was so confident that the driving company would come. so anyway I filed a grievance but all that does is they're going to figure out some way to spin it that it was my fault for not wanting to get in the car with the bully man. Anyway hopefully the sky will not be sent out you see I had already filed so that he would not be my driver but they sent him again and I was in a hurry to get there so this is what they do to me. So I decided that I couldn't go get my chest x-ray because it was time for my pain pill now I had brought enough to stay there for a couple of hours but I never expected that I would be gone like that I wish I could take all my medications for the day because you never know when you are going to be gone But anyway I had to skip this chest x-ray. So I called to see if I could go tomorrow. So here we go. That's when whoever was scheduling said that the doctor always says go to Radiology today and at that doesn't necessarily mean that it's a stat or an urgent okay so in my world when somebody says proceed directly to Radiology today that sounds like that's what I should do. And now I've been told that it was not so important it means that I just sat waiting around to go there for nothing I should have just had them bring me home so anyway but it wasn't just the problem with getting another driver to come out you see they sent that driver to the wrong address again and then they actually sent somebody to the nursing home to pick me up thinking that I needed to be picked up there and more than one driver came in instead oh you're in a wheelchair I can't take the wheelchair. So it was a comedy as I just sat there waiting now I find out that it was for nothing. anyway it's not like I would have gotten home any sooner. but I wanted to find out about getting the chest x-ray and so the final verdict was that I could go next week and that was fine. and I'm actually grateful because I'm so exhausted and sore it's hard to sit in a wheelchair like that. I mean really my back is aching my legs are aching. Well it's because I ended up climbing into a vehicle I had to get out of the wheelchair and climb into a little mini SUV. so my muscles are really sore too. So anyway I just said okay forget it I don't want to talk to any more people about this whole thing I just want to watch some movie and up my dinner and just forget about it and then I fell asleep.

 so now I'm up in the middle of the night kind of restless and wide awake. okay so here's the new thing




 I have been diagnosed with sleep apnea. And always one to do something spectacularly I have the worst sleep apnea that my doctor has ever seen he told me. so he wanted to show me the chart he said over 30 is considered severe. He showed me the chart which showed 2in of nearly all the blue filled in. he said that I had a hundred and six. he told me that I should never even nap And that I should always have one of those oxygen readers on my finger to check the saturation. So okay now about my CPAP machine well I didn't get the run-of-the-mill CPAP machine I got a BiPAP machine not only does it blow air in my mouth when I'm inhaling it blows air when I'm exhaling!!!



 anyway I feel like I'm in a tunnel now they do give you 30 minutes where it's not blowing As hard as it will be blowing later when you're sleeping. So it's actually tolerable at first not pleasant but tolerable. Okay so when I wake up in the middle of the night to take a pill and that thing is blowing like crazy Thankfully I go back to sleep pretty quickly most of the time but when I don't then I just take the thing off. there's a lot of times that I wake up and I've taken it off in my sleep. I feel like I'm suffocating because of all the air blowing in not because of the Mask. I tried the new nasal pillows and the nasal mask but it feels like the air is scraping off the inside of my nasal cavity maybe even blowing my brains out. So I didn't use it for a good six months it just sat there. And yes I asked if I could get the pressure lowered and I even ask if I could try the full face mask. The answer was always the same this is what your doctor ordered because this is what you need. well it wasn't that I just didn't want to use it it was that I physically could not wear the thing. And then a couple of things happened



 first of all I signed up for a study called overlap study and they look at why people don't use their CPAP machine and how to help. so I was randomized and I was put into the group that would do some online activities and watch online videos that would tell me all about it and I would be able to speak with the coach. so anyway there were seven big chapters with each having between 3 to 7 modules inside that talked about the benefits how to use it how to clean it Stuff like that. So rather than go with the scare tactic sleep or die there's was supposed to educate you and convince you and support you that this was the greatest thing since sliced bread. So then the coach called a couple times that were inconvenient. Imagine that. I have the most free time than anybody I know but we had to reschedule. so we did and when we were talking I had already finished all the modules. so he said do you still want to talk to me since you're finished. I said that's why I wanted to do this so that I could talk to somebody that somebody is holding me accountable And somebody understands what I'm going through. The first time I talked with someone it was a respiratory therapist he was very knowledgeable and he's the one that said with the high-pressure you have you should not be using those nasal pillows because I know how uncomfortable that can be. Finally somebody that actually understood that I wasn't just setting it aside saying I don't care if I die in my sleep that I'm really having problems using this real problems in fact now I now have another album I'm falling asleep in my chair and I'm sleeping there rather than getting to bed and put the mask on. but it could put the mask on while I'm sitting in the chair but of course I tell myself I'm not going to go to sleep right now I'm going to finish my tea I'm going to finish coloring I'm going to finish watching a movie all these reasons I'm still eating.


 so I am short of breath for real. so I'm using oxygen. so right now the oxygen is not hooked up to the mask and I said I think that I want my oxygen hooked up to the mask but the doctor needs to check out all these things I've got to sleep overnight with some monitor thing he's got to look at there's all this stuff he has to do. Another excuse for me to just set the mask aside and wait till another day night.



 when I met with the doctor I had been using the machine only because I had signed up for this study I was going to meet my goal and I was going to meet my goal of using it for 4 hours at night. That was supposed to build up some kind of Tolerance get used to it and maybe I'd actually sleep through more than 4 hours but I have to take a pain pill so that's not happening. I'll get back to the pill thing in a minute. so the doctor says I see that in the last 30 days you've only used it 30%. Ben mind for the last six months I hadn't touched the thing. so I said to the doctor well that's 30% more than I've ever used it before. But the doctor ask to do his job so he had to say a lot of scary things to try to convince me I need to use this. the problem is knowing I need to use it and that it's dangerous if I don't is not helping me to breathe Against the Wind Tunnel.


 so I told the doctor that when I had been in the hospital for 7 days that the respiratory therapist had come in and surprised me and said would you like your CPAP machine hooked up now. and I was so surprised because I never used it I said no I can't use that and she gently said well why and I told her why and she said well why don't you just give it a try and so I said okay I would she put a full face mask on me and I tried it and there was no big puffs of air no wind tunnel it was just a gentle steady stream and and I didn't notice that I was being suffocated and I wore it every night for 7 days. So I suspected that it wasn't on the setting I usually get and the doctor said probably not and so he looked it up and apparently the setting I was getting in the hospital was a v and the thing that I'm getting right now is 16. So I'm getting a little bit discouraged because I'm really not using it more I'm just feeling a little bit more depressed and when I take their little how are you doing today surveys it's like the more I don't use it the worse I feel Yet even that doesn't make me want to use it. I know I'm being very immature and irrational like a child that doesn't want to take her medicine but breathing is something I do comfortably without it. yes it is scary that if I stop breathing I may not start up again. I wonder if all those little episode things that they're saying have anything to do with the fact that I'm in constant pain. so there's that so because everything has been harder to breathe lately with this fluid from the edema and between the sleep apnea I really wanted to get that chest x-ray. plus I need a TB screening I was exposed to TB but apparently I just had to take the medicine it never went active but I had the Little Dipper kules floating around and so for 10 months I took various medications. I'm sure all is well. But right now I don't know when I'm going to get that chest x-ray because it looks like it will be next week. I really look like I'm always not complying and I know that the doctors will think it's ridiculous and I'm also have my legs wrapped up again because they're trying to prevent another bout of cellulitis I've had two bouts of them on both my legs so now I have to wear those little balloon support pump things and at first they said do it twice a day morning and night for 1 hour well again I have to do something spectacularly awful so that didn't work at all on me.



 so the doctor told me to put them on three times a day and perhaps leave them on for 4 hours per session. So where does the living happen in between putting my legs and knees boots made out of bouncy material and fills up with are supposedly fixing my lymphedema problem. so I'm out of them constantly at my legs hurt and I am just swollen but I'm wrapped up so I've had to take the wraps off twice on one Leg . Right now it may not be wrapped sufficiently to prevent the swelling. but I had to take it off because my leg was red and had striations on it. So tomorrow we must take it up and look and see if the skin looks better because it shouldn't be red like that then I'll have to be on antibiotics




 so until my wound is completely healed on my heel the pressure sore I cannot get the spinal to relieve my pain that's why I'm taking the extra dose of pain medicine instead of taking it every 6 hours I'm doing every 4.



 the end of last year I have that spinal electrode trial and I was going to get the electrode put in permanently which would enable me to go back to therapy walk more get stronger work on my vestibular problems and most of all not have to take the drugs maybe even Beyond cutting back maybe I could cut one of them out even maybe I wouldn't have to take the Lyrica. I was ambushed with these darn swollen legs and kneading to take antibiotics for the infections and then to get a pressure sore on my heel. So right now I never go out and play cards. I miss my friend I wanted to give her a new pack of cards so I did. but she was sleeping so we left it on the table I hope she knows it's from me I never could play Bingo I'm just not my usual bubbly self either I'm tired and fatigued I don't seem to get enough air ever I'm not struggling for air when I'm awake because I do move I guess I'm not breathing at night. the one thing that upset me was when I was in the hospital one of the neurologist from the pain clinic came over and told me that I shouldn't worry about the surgery to put the electrode in right now because I'm not healthy enough to get the surgery and they have to get me healthy enough to get that implant put in. no it's an outpatient procedure but there is incisions that open the spine and that's risky. so I can get to think about this anymore I just put it on the back burner





 then I got a message left that I need to come pick up the shoes I ordered you see every year I get a pair of shoes that have diabetic orthotics in them and so I went and had a fitting and pick the shoes and he said my feet were so swollen that he wasn't sure that that was going to be a good fit and I said well this is the feet that I've got to work with I've got to order the shoes now time will go by and I've already waited for a couple months to do it so I just have to order the shoes right now so I ordered them but right now I wouldn't be able to get my foot in a shoe they're too swollen and all I do is wear socks so anyway I'm going to go pick up the shoes and I'll put them with the other shoes and pray every night that I'll be able to wear them someday.




So I can't believe that June is almost over I don't know where the months have gone I don't know where the time is called 6 months I have just disappeared and I can't even imagine what is going on I've missed six months of doing the things that I usually do I'm always in a wheelchair now and it's a horrible and then they yell at me because I get up out of the bed and I walk around and my legs laying down in the chair and I'm thinking I just want to sit in the chair. They need to get me a footstool right now I'm using a box with the pillow on it.



 I'm waiting for the home to purchase a proper foot stool or a chair that has a reclining thing. Plus they took away the foam at that was around my bed. they said that they were cleaning it and that was in early May and it laid outside and it got rained on for over six weeks I've been saying you're not cleaning it you're leaving it in the rain why would you do that. So I hope that I get my phone at you know they don't worry about me falling I guess well I'm pretty good at not falling nevertheless I have nystagmus and double vision and I also slide off the bed and I also get the shakes sometimes the jerking and I really am a fall risk. because I haven't had a full lately is because I am very careful and I always ask for somebody to come in and help supervise me getting out of the bed and into the chair so if I do feel shaky there there and I think it helps me go slower and pay attention




SO with all of this dreary nudes I must say that I still call my friend did I grew up with constantly and we talked she supports me and we talked about when she gets retired and she's going to come out here and put her feet in the beach. she says I need to get ready to go on some road trips with her. she keeps my spirits up but I'm afraid I'm going to disappoint her because it seems like it's just one health problem follows the next and I'm not getting healthier I seem to be doing the opposite and I really feel horrible so I just rest a lot.



 it is unimaginable to most normal human Minds I think about being in constant pain at the 8 and 9 of their ridiculous scale because no one not even a woman in labor is experiencing the most pain possible but I always say well according to the scale of the worst pain I've ever had this is between 7 and 9 because I actually get to the point of screaming that I need my pain medicine. and every time there's a new nurse I have to go over the protocol of how to manage my pain medicine it's like they say oh whoops sorry I didn't remember to wake you up whoops sorry



 so all I can do is wash my hair in the sink in the bathroom and do a bed bath kind of thing in the bathroom because my two legs are wrapped up and must not ever get wet. The bandages are changed once a week. It's just like I have done this twice before but this time I don't have the infection they want to keep compression on so I don't get an infection. so sometimes I'm so happy just to have a nice washed hair and then I'll put a little makeup on just so I don't look so pale and washed out. before I would sit out in the sun not too much not getting a burner to tan just sent out just to get the vitamin D and just to get the sun on my face. So I opted  to keep my nails polished this makes me happy to have pretty nails And I love to change the colors. But now I have a nail fungus again so I've had two keep them trimmed way down and also I've lost parts of the nails due to the fungus so part of them will have to grow back again and I'm just thinking please God notice me.




 once again I have my days and nights mixed up and I'm just sitting here dictating this because I haven't made a posting in a long time. I kept thinking well maybe tomorrow I'll have a better mood or have better news but it seems that the status quo settling in.


 thing that is most painful to me is when people talk about their outside lives things that they're doing and I realize I'm not doing anything. I literally do nothing except occupy space. So the lady that came to give me communion told me to pray about my purpose and what I can do here for others. and that has always been what I've tried to do since I'm here might as well. so it warms my heart when one of the CNAs came to me and ask me some advice and he said see that's why I came to talk to you. he even got pen and paper out and wrote some things down he said something that has been making my soul soar. He I said you always know something about it no matter what I ask you you always have a story and good advice. wow now my own children have never said that to me okay so maybe they have at some point in their lives when they were much younger I didn't know everything about everything. well all I did was just share my own life experience and give them some resources and this young man was wise enough to know good advice when he heard it! So anyway I was so happy that I was good for something that day. now there's this lady that pops in to visit with me and she usually wants to tell me the same story and say the same stuff and I listen and I try my best. anyway this young man who's been my CNA this past week keeps calling me Mom and I know he means well but it makes me want to cry because I miss my kids. so my son he text me and yet it's not the same I say I want a phone call but I never get one and of course he's endlessly busy and I know that but I also know that there comes a point where people withdraw and they don't keep up the pace anymore except for my really good friend who always sends me a box every month and it's really nice they have a token because it means I'm not forgotten.



 I can't believe it it's already 3 a.m. and I'm noticing how hungry I am I guess because I skipped my lunch and I only had a little salad for dinner because I didn't like the dinner and I didn't have any snacks. I was supposed to stop at the pharmacy and pick up stuff and then I would have picked up some soup and supplies that I need but that didn't happen today oh I got to find out when my next appointment is and then try to go later. Okay well I have to stop now

. If you made it all the way to the end I thank you from the very bottom of my heart for listening and caring.





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I did read the whole blog. I guess people who make you wait just don't realise what harm they are doing. That sort of thing happens in hospital and specialist centres here too. I have overheard many people complain about patients transport issues. I guess my advice is to just take every day as it comes. I am sure  your life has a purpose and maybe that is just to be a good listener. Everyone needs one of those. The scheduling system seems a problem here too, my last pre-admission clinic took five  hours instead of the proposed three. Maybe medical personnel needs to be better trained in timeliness and maybe be more thoughtful of wheelchair bound patients . But that is never going to happen is it?

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