Things have been really hectic lately.  I am starting to feel better, but worse new feelings that I don’t really care for but have a feeling I am going to have to get used to them.

I am closer to my original weight of 135 or so. (Give or take a few depending on the day) Due to being back on full strength diuretics, they said I have more kidney failure and are a bit concerned over the effect the diuretics are having on my kidneys, but my heart is so weak that I cannot handle the fluid and the kidneys won’t push it out like I need any more without it.  I have a feeling it won’t be but a year or maybe a little more till I am on dialysis. (It scares the hell out of me.  Now that I have said that, I should have probably said it scares me bad because I am not sure much could get the hell out of me now that I think about it.)

It’s been that kind of say today.  I am thinking a lot and maybe too much. I do that whenI get certain things going on.  This time it has been that I have had to use my white cane to get around a little more than usual.  Using it tends to bring reality really close about my destination and I get to feeling pretty vulnerable and reality hits me hard.  I hate using it, people treat me a little different and I don’t really care for it.  Having that white cane out there brings out all kind of situations I’d rather not be in.  I’ve been falling over a few things of lately due to my eyesight being shot and I was asked if I was drunk, I can’t seem to win at times.  It happens and I laughed my way out of it without anybody even recognizing my challenge.

I won Hockey tickets last week for the City’s CHL team.  I signed up at a liquor store when I went in to get a soda before going to the employment office.  I loved it, I have wanted to go ever since the team came to town, but have not had the money to splurge for tickets.  I love Hockey as much as I do NASCAR and when I lived in Sioux Falls had season tickets to the USHL team there, so I really have wanted to go.  It’s a good time.  I asked a friend that I have not seen for quite a while if he wanted to go with me, he was pretty excited because he said he had never been to a hockey game in his life.  It was fun and I am so glad I went and am thinking I need to spurge if I can.  It’s probably the most fun thing to do in town would throwing a bunch of money and or drinking to stupidity.  (Not much going on here)   

I had not seen my friend Bigfoot (His name is Lou but we always called him Bigfoot or Foot, long story and well we all have our names for each other)  We got to the arena early so we sat and talked and caught up with eachother about stuff that had been going on and while explaining some of the difficulties and Foot stating that he had not seen me with my blind guy cane so much and I had to fill him a bit more in about the diabetes, heart stuff, eyesight and other things.  He just shook his head and said he could not even imagine it and asked me what was it like.  I had been asked this many times at different levels and stages, but have not been around anyone much for a while so I had to actually think on what I could tell him.  I just put out my hands and searched for words and found them as I looked at my hands and used them to explain what it kind of felt like so he could understand.

I told him that it was like a disease that started doing things to your hands.  One day, your pinky’s fell off of both hands, well it happened to both hands so you learn to get over it, adapt and move on and keep going.  Then one day you lose the thumb on your right hand, well you still got your other thumb and you start to rely on the left hand more and more and keep going.  Then one day your left thumb falls off and your left with these 6 fingers and well now you adapt more, start having to depend on other people a little more and keep going.  Then you lose two more fingers at once, the dominate hand takes over, you adapt, adjust your way of life to fit a bit more, rely on other people to do things for you that are impossible for you now and keep going.  Pretty soon you don’t have any fingers, you can’t do anything you used to do, you keep looking back and realize the only thing you can do is keep going.

I stopped talking at that time and just stared at my hands and wished I had used some other way to explain it for some reason, but I think he understood.  I did not felt like talking much but made small talk for a bit till I worked it through my head.  I did not really care to look at how I looked at myself and realized I was having a tough time with all the sudden changes and reduction of my life and that I really am not sure how to deal with it or even change it.  It took me about 20 minutes to dwell on it and then just laughed it off and other people started filling seats and some movement came about on the ice and we were soon shouting at the top of our lungs and having a pretty good time.  I fell over the seats in front of me because I could not see the overhang and Foot grabbed me by the coat and it reduced the impact of me on the floor 3 feet down, I’m glad he caught me, I don’t bounce off things like I used to. 

I’m glad I went out and plan to go out next week to two more games I bought tickets for with my income tax money I got back.  I have the rest of it planned for the next few months so I figured it was worth going again, plus I need to find ways of getting out and maybe Foot and I can start to do a few things here and there.  I know he likes the games so I figure I can always get him to go.  Being able to get around after 6pm is rough for me or expensive because the bus stops at 6pm and the Taxi’s here are mad money to get anywhere.  It’s nice to have a buddy or friend and someone besides my parents to get me places.  Transpiration is my number one issue right now, it sucks.

I have not been able to find a job yet, I have been applying to quite a few places and no one is calling me.  I wonder if I will be employed with my now visible disabilities. Before I worked and just handled them, it’s not so easy to cover them up now.  I have not gotten a medical determination back from Unemployment either, they are taking their sweet time and I have a feeling I will be denied.  Money is tight and being only on disability is barely paying for it all, but I’m getting by.

I got a lot of emotions going on right now.  I am having a little pain in my back with my kidneys too that I am trying to just get used to and only take the pain meds when I have too.  Since the pain meds are not great on the kidneys either.

Sorry it has been a while since I posted, it’s been interesting.

I wish you well

Robert

I am hoping that I can get some other peoples experiences with kidney transplants, dialysis or anything they know about this stuff, mine are shot and I am doing whatever I can to keep them struggling, but they are getting pretty weak.  I need to start reaching out and looking for experience and options.  I got the best kidney doc in town and trust him most of the way.  I know 5 people that have gotten the transplant and their experiences, which mostly are unpleasant but need to se what others think as well.  I’m doing other on line searches and other things, but I’d like to hear what I can. 

Today has not been all bad, my blood sugars have been good.  Only a small spike to the 200 mark but easily brought down with a correction and a small snack.  I’m starting to get my appetite back in little amounts, but still feel like I am eating like a bird, picking and taking it slow so the stomach won’t hurt.  I still got this fist like knot in my back, but it feels a little less on the out push.  My eyes are terrible today.  If I was walking around other than my home, I would be using my red and white cane (Which I keep with me most time in a backpack.  I’m not too good in crowds and some people just don’t understand when they stop and I bump into them, that it was not personal.) The cataracts in my only eye is really really cloudy and I am not focusing really well, using my bifocal quite a bit more than I usually do.  I see the eye doc in two weeks, I’m not really looking forward to it. 

The celiac is still kicking me pretty good yet, and most likely will for about a month or two, but I’m starting to feel like myself a little more each day.  I see my GP next week and am trying to decide if I should ge the H1N1 shot, I had he shot already in the 70’s and everyone that has gotten has been ill for 2 days after it, so I got to think that one out a bit more and ask some questions.

Anyone able to put their infusion site on the outer part of their legs?  When I do it gets torn out either by a doorway or when I sleep, so I quite putting out there and focus on the insides of my legs.(Having limited sight, only 7% vision in the right eye, I take corners a little short some/most days.)  I don’t think I will be going anywhere near my lower back for a while, not as tender as it is right now.  I may see what it takes to try the back of my arms in a week or two, just for kicks. (I’ve never liked getting shots in my arms) 

I wish you well

Robert

Today was a little better than most days, but most likely because I hid in bed pretty much the first part of the day until 3pm.  I did get up and take out the trash at 8am, but that was about it.  At 8am my bs was good at a 122 and when I got up at 3 it was 282, not great.  I ate and bolused accordingly and spent a few hours testing and watching the TV before getting ready to be picked up by Mom at 6pm to go to the annuel Range Days Rodeo we do every year.  I decided that a trip out of the house might do me good and I was feeling ok with the exception of the dull pain I have in my back on the right side, most likely kidney stuff.

I fought with boluses most of the afternoon and it seemed like none of them were working because my BG’s were climbing into the 320’s before anything took effect and I carefully watched the active insulin so I would not come down all at once and too hard while I would be at the Rodeo. I have been figting with the blood sugars lately being sick and going through all this stuff, it’s been a challenge but I am trying to take on everything as in the spirit that I have been here before and that I take it one day at a time and just do what my body and I can handle right now.  If I am tired, which I get real easy, then I just rest.  I get over tired and it is like I am drunk because I just cant think right and even start getting dizzy at times.  I lay down and sleep for a good hour or two or more and then start feeling better.  My body is taking me through something and I just got to go along for the ride right now.  But in between napping and fighting blood sugar and this irritating fist that is pushing out my right side lower back, I am feeling better.  Most likely because I am shifting my attitude over to another side.

I got some bad news I somewhat was expecting and now am in a fight mode with my determination of blindness with SSDI.  They said they recognized that I had significant eyesight loss but were not going to give me a definition of blindness and turned me down.  Ok, first rejection, I was hoping they would not do it, but that is the way they want to be.  I have to start on the appeals process. I wrote back and my advocate is getting direction from the lawyer, and I have already wrote to her saying I will be going full circle this time, no matter what they say and I want to fight.  So I am sure I will have some interesting times ahead of me.  Last time I did this it put considerable strain on me and did not help my health and also added to my heart attack.  I’m a little more prepared for it this time and trying not to let them get to me like they did.  But it was a three ring circus on fire last time, and with Berry obomba in charge of the administration, I expect a bigger fight and hassle now.

The Ranch Rodeo is a really good time here in SD.  It is where actual stuf that goes on at the Ranch like branding and Trailer loading and healing is done, it’s even more fun than sanctioned Rodeo because all the small town hero’s that really work on a Ranch every day in all the small towns come here and complete in time trials.  It’s a blast and I really enjoy going every year.  We get our tickets from our Farm Service Burrell every year and this time they really put us up in the nose bled seats so when we got to the 25^th row in Section E, we pretty much stayed there till the end.  Climbing all the stares tonight really wore me and mom out.  I remember when I used to run up them, not anymore. Funny what time and illness will do for you, but I enjoyed myself greatly anyway.  I am sure that I will sleep very well tonight and mostlikely most of tomorrow as well, but I am glad I got out of the house, it did wonders for my attitude.

While I was at the Rodeo, I kept pretty close attention to my meter and how I was coming down and snacked accordingly to the popcorn I brought along in my back pack because I cannot eat the popcorn and pretty much everything a the concession stand due to my celiac and I am not taking any chances right now with it.  I watched my BG fall all the way to 175 and started snacking a bit, not adding any insulin for the carbs I ate because I knew how much was working undercover.  By the end of the night, before the long climb and walk back to the truck, I tested and was 95.  I took in 19 carbs t hold the pattern and headed back to the parking lot and to home.  I did not want to crash out on the way back in the cold. I’m 106 right now and that number means the insulin and carbs are working together now and will eat a small meal while my stomach is cooperating with me and then watch some TV before I crash out tonight.  Will concentrate on mostly proteins so I can balance a bit and hopefully wake up not as crazy in the numbers as I did today. 

 I am keeping an eye on the pain in my lower back on the right side and just taking Tylenol for it.  I do have something stronger if I need it but don’t like to take it unless I have to. I am hoping that my kidneys hold up and can mellow out like they normally do, but I am not banking on anything ta this point and what the numbers have been showing.  The kidney doctor’s nurse gave me instructions to start having blood drawn every two weeks starting this Friday.  How the pain and numbers matchup plus regulating the diuretics and fluid buildup is the determining factors in treatment right now.  So I am riding on luck.

Time to dig in the refrigerator to see what I can put together before lights out.

I wish you well

Robert

It’s been an interesting day.  Most of it I have spent ill and not feeling my best but went along mostly with my day.  On my schedule I had a meeting planned with my SBVI counselor (Like Voc Rehab but for the blind and visually impaired) and my job coach because we are out of options and my job coach contract expired and we needed to renew her contract with the state to keep helping me.  The job coach helps me fill out resume’s (her handwriting is a lot neater and due to my limited eyesight it takes me forever to fill out forms now days.  It’s funny because I used to make forms from scratch in previous jobs I have had, funny) She also makes call ahead of me approaching the job and also helps me with research, I like her and we work very well together.  When I get the job, she will also help me with addition and negotiation with the job and South Dakota to make the job more accessible to me, like bigger screen monitors and type and font magnifiers and other things that require accommodation finesse.   

I woke up in rough shape and my blood sugars were out of range more than a bit because I crashed twice last night and the last crash I felt so bad I did not want to mess with a third one and purposely over did the carbs so I could just sleep.  It did not take me but 4 hours after I woke to get it back in line, not a great excuse but I really feel miserable right now.  The excessive high sugars don’t help, but at least they are not making my skin crawl and giving me the most horrible dreams and waking mind freaks. (Where you wake from the dream and can’t figure out where you are and what is real because the emotions attached to a low blood sugar dream wake with you and adds to the confusion, I hate them because it feels like a flashback to me and I often have a real flashback during them or after them and it’s not that fun to be a part of some days, especially if I am already feeling body sick) So yea I messed up a little.  It caused me to eat two apples this morning for breakfast instead of my routine two oranges I wanted but the 50 carbs were easier to handle than the 100 carbs.

I got on my bus and headed for the Department of Labor where SBVI and Voc Rehab are and arrived early because it was the only time they could fit me on the bus, so I went in and seen what the SDDL had, not much new, in fact nothing and the place was empty except for about 5 people, a lot of people have give up on SDDL at times because no one is hiring at this time.  I walked over to where my meeting was and met my job coach and in a short time my counselor.  My SBVI counselor is one of them people you just want to tell her to “Get to the point.” After 3 min of her opening her mouth because you know it is going to be 15 min of nonsense to get to what is important, in that nonsense is a lot of chewing out and belittling and she does not and won’t recognize it, we’ve been through that kind of stuff and I just do what I have to, but today while feeling very off and rugged, I really tried to keep myself in check but hearing I was not feeling well and was sick with kidney problems and celiac, she decided it would be a good time to ask me if my attitude was in check because she knows what I am like when I don’t fel good and she took 45 min to say it. 

My voice is harsh and my throat is sore and I have to talk extra loud to get over her some times and she is losing her hearing as well, my voice is pretty mellow and med toned so she really has a hard time hearing me, but seems to only miss the important stuff that comes out. (I’m a little moody still if you can’t tell)  We got some good ideas and some contacts to call and also my job coach got her contract renewed to continue to help me.  I left the office and headed home.

I attempted to sit and watch Glenn Beck at 3pm, but felt so badly that I curled up in the chair and fell asleep and ended up just getting up and crawling in bed till my kidney doc’s nurse called me, I could barely keep my eyes open I was exhausted but got through her telling me to keep on the diuretics for right now and try to reduce them and we are to start having a kidney panel blood draw every two weeks now. It actually felt like a dream when she called and we did that but I literally drug myself to the computer from the bed to make the appointments on my calendar and write some very illegible hand writing notes before hanging up, falling asleep in my office chair for 30 minutes due to exhaustion and then crawling back to my bedroom and falling back asleep till about7pm when I needed to get back up and check blood sugar and eat something.  Even with way over correcting for that second really mind blowing low, I was only 173 and that is better than what I thought I would normally be at with a over correction, my body must be working overtime healing or tearing it’s self apart.  

That is about my day, wanted to keep others informed since I am so rough right now so you all don’t worry too much, I appreciate you caring and it means a lot to me, thank you for your notes of support and well wishes.  I am trying to eat the rest of the soup I made tonight and like normal, it’s taking me about an hour to 2 hours to get it down. Balancing insulin and extra long meal times is entertaining if nothing else.

I wish you well

Robert

It’s been a very rough week here, I not only have been dealing with a lot, but now I got a lot that I really deeply have to think about and I’m not really too sure about things and it has been tough to get on a writing basis having been in a deep, deep though base where I somewhat shut down and only deal with what I have too.  Time to put it in words the best way I can.

I made an appointment to visit my heart doctor because I was having heart failure with the liquid weight I brought on due to the week I stopped my diuretics for the kidney panel. It was very painful and scary at times, I was happy to start back on the diuretics and start dropping some of the weight, until my visit to the heart doctor.  A few things happened before then I should probably put in some place too, so I will go back a bit and get them out to put in perspective just what my body had been doing to me up to that point as well.

I had gone to the supermarket and found Progresso soups on sale and they have allergy information right on the label.  I forgot something said by a lady at my Celiac support group about Progresso soups being Gluten free, but ONLY if they said they were Gluten Free on the label.  I paid for it in a really bad way. I bought and ate a can of soup that did not say it had soy and milk allergy info It but nothing about wheat or gluten, I did not think about it and ate it and got very, very ill.  I ate it Wednesday night and still think that Barry obomba’s state of the union speech was the reason I threw up, but the gluten in the soup did not help.

I’ve spent most of the time in bed and trying to eat but it’s been very difficult, and has been playing hell with my blood sugars.  Seems I’ll get it to hover around 115 for a good few hours then it will go crazy high or crash me hard and at that point the only thing I could do was sip Gatorade and balance it between juice and insulin for at least 4 days.  It is almost like dealing with a flu, but much much worse.  When the small intestine gets destroyed in a attack like that, I don’t absorb any nutrients and vitamins and man does it do some special kind of stupid things to the body and the mind.

I’m dealing with all of this the day before I go to the heart doctor, and I look and sound pretty rough when I get there.  I was not very impressed with myself when I stepped on the scale and was 138 lbs.  I still have quite a bit of fluid on me, thought I lost a bit more than that, and knew I was not back to normal yet.  The blood pressure cuff felt like a knife cutting into my arm due to the swelling and also the celiac attack, my whole body just hurt.  My heart doc came in and she checked me over and I had told her what was going on and that I know I had some heart failure when I was up to 145 lbs, she took a EKG and then felt around on my abdomen and around my chest area.  She found a lot of fluid in my abdomen still and was a bit concerned.  Took some blood tests to see where my other numbers were and said she would call my kidney doctor and get back to me in a few days.

I went home and just crawled in bed and really only gotten out in short stints to sit up and watch some TV and check my e-mail and try to eat.  I’ve barely ate much, an apple, several glasses of diet 7up and finally some rice with cheese and broccoli and that is more than I have had since last Wednesday, it’s been interesting trying to balance anything out with numbers.  Today’s been crazy highs and took most of my pump reservoir to keep bringing it down slowly and I am finally floating around the 130’s,  I’m not fighting very hard to get it lower than that right now.

On Friday, my heart doctor’s nurse calls me and tells me that I need to not use the diuretics if I don’t have to as much as possible because she spoke with my kidney doctor and the diuretics are killing my kidneys.  I just about dropped to the floor and got red hot pissed off at the same time, but it was not at her and I asked her what I should do then because if I did not have the diuretics I was miserable and gaining weight from having a weak heart and failing kidneys?  I don’t think she was ready for the question because she lost her confidence and started stuttering. (I may have had a bit of frustration and anger in my voice I cannot seem to hide once it is there.)  She said she did not know and she would ask my doctor and to hold on.  I felt bad and knew I should be speaking to my kidney doctor about this instead of her.  She came back and she said the doctor said they did not get that far yet.  I thanked her and said I needed to call my kidney doctor before they closed up.

I called the kidney doctor and got his nurse, the doctor had left already.  She looked into my chart and asked what was going on and I told her and wanted to know if they were wanting me off the diuretics, and that I could not be off of them without equal risk of heart failure and I did not know what to do.  I did not get a chance to bite heads off on why they did not tell ME that the diuretics were killing my kidneys and that is why they wanted me off them so fast, I need explanation of this stuff and why it is going on, they did not discuss this with me and did not get back with me like they said they would, I have a bit of a bone to pick with them come next week. She did not have an answer and needed to get with the doctor on Monday and would call me back, just to keep doing what I needed too.  It’s going to be hard to get through the first 10 minutes when I see the doctor the next time, I know it is in the best interest to keep my head, but I am really upset right now.  I’ll get through it, have before and need to keep my cool.

My mom and I got a chance to talk a bit, we have both been thinking of this type of day to come and she had some hard questions and I have been nuts inside my own head because I have so many mixed feelings.  I know my kidneys are failing and I am getting very close to having another part of my body fail to the point it is going to kill me or be a lot of work to keep me going.

She took a very deep breath and wanted to know my mind on a transplant.  I’m so tore up that I don’t know if a kidney transplant would be worth it, or if I even qualify or if I even want it.  I know 6 people right now that have gotten kidney transplants and they go through bouts of hell with it, take so many very expensive drugs to keep from rejecting the transplant and the drugs constantly make them sick and unable to do a lot of things.  I don’t know if I really want that, it’s hard on me to think about this stuff again.  I do it all the time, think about it, I don’t really get a break from it and I don’t know if I could really deal with it.

I’m caught with the fact that I have lived with the diabetes for all of my life, 40 years.  It has taken things I’ll never get back.  It’s taken my eyes, which has taken away a lot of my independence and freedom, the love of my life, cars and mechanics and the ability to just go out and do something when I want too.  That has trapped me bunch and I do what I can, but not what I want and used too. It’s taken my heart and the last three years have been a challenge dealing with getting to halfway back to the man I was, no more lifting heavy and being able to go like crazy and extend myself.  Having to pay real close attention or I’ll drop on the spot and wait for someone to stand beside me so the ambulance can pick me up.  Having developed celiac so now I can’t even have bread or flour so real hamburgers and hot dogs are completely out of the question and touchier me just walking by the places. Now these kidneys have to come tapping on me saying, guess what you got to deal with now. It’s a lot to deal with.

I’m 40 years old and have been somewhat ready to die my whole life but kept going, now I’m falling apart and keeping going, but physically able to see the trail of parts and pieces I’m leaving as I go now.  I’m in a spot where I am ready to go but still believe I have not lived enough.  I still got so much I want to do and 3/4^th of them I know I can’t.  I feel like I don’t want to be done, and doing everything I can do not to be, but it’s starting to get to the point where it is not really up to me. It’s very frustrating.

I guess the good point is that it is not like I have not been at this point before in my life, and it is not over.  Would it be easer being over than being limited? Bah…my heads chasseing it’s self around and around again inspiring emotions I just am having trouble understanding.  Fear, anger, red hot anger, wonder, want, need, surprise, desire, knowledge, just a whole bunch of them all at once and it’s pretty humbling at times.

Anyway, I’m going to finish this up and stop writing because I’m not sure where I’m going with this anymore. 

I wish you well

Robert