Been doing this blog of mine for 4 months now. I just hit 20,000 views. I don't know if that is good or not, but I'm sure as heck happy about it! Not very often I impress myself anymore these days lol. I couldn't have done it without my whacky little brain lol. Kidding, but it couldn't have happened with all of you!!
As 2014 comes to an end, I can't help but find myself looking forward to 2015.
This past year has surely had its poor points, like us deciding to close the bar and me, well about dying and stuff, and although I would like to think of the good that happened with my family, like Scarlett being born, Sarah being in school looking out for our future, and Ryan really learning how to ride bike, read, lose his first teeth and grow as a boy, and me - well with love, strength, support and prayers - living. It has been a difficult journey for Sarah and myself, but we have remained strong and look forward to continuing that into this next year and many more. Back in June we planned a Caribbean cruise for this winter, and that now comes this very next week. When we planned it I was in a wheelchair, grouchy and on a ton of medicine with not much of an idea of the future. Now, I'm not as grouchy, can get around on my own clumsy feet, and have kicked a bunch of medicine, with a less cloudy future - at least short term future :) and have hopefully a place to live where we can stay for awhile.
I have much to be thankful for.
Have a safe and wonderful New Years, and to everyone out there...See you next year!!!!
With moving, Christmas and now our family present of a Chicago trip, plus Packer stress, I've been behind on my posts. I will get back to it ASAP. I have plenty to say!! :)
Until then, happy reading, happy New Years and see you soon!
When I was trying to recover in Bethezda I had asked Sarah numerous times about her bringing me my phone. My cell phone(s) has been embarrassingly rather important to me up to this point for the past 14 years. I think I have mentioned this before, but she didn't bring me it because I wasn't able to use it. While my muscles were extremely weak, my shaking and cognitive physical ability was worse. I couldn't have used my iPhone if I wanted to. I couldn't write, drink on my own or do much anything else with my hands let alone use or even hole a cell phone. After several days Sarah had told me that she was going to bring me my iPad for me. Up to this time, I had really never used any iPad, let alone my own. Honestly I didn't even know why I had one. I wasn't much interested in having her bring it to me, I just wanted my phone. I used it for texts, email and seldom FB along with Internet use, as I seldom used a computer for anything anymore than these things. I eventually agreed to having her bring the iPad. Maybe it was after I tried multiple times and different ways to call her with the hospital phone. One time one of my Doctors brought me in a landline phone for me to use and he dialed Sarah's number. I was pretty messed up and was wondering if I was being lied to about the call, but I finally did get ahold of her. I don't really recall why I needed to talk to her, I think I thought something was wrong, something like the time of the day/night it was from what I remember. Not sure, my doctor was nice though, nonetheless. Once Sarah brought me the iPad I didn't really use it for anything. Maybe I didn't understand or realize that an iPad did the same if not more than my phone could do. Didn't really matter, I wanted to check texts, respond and start reading and responding to the FB page she started for "Mikes Progress" and a few other things like ESPN. Clearly I was in no condition to do any of this, as it never worked. I couldn't figure out anything out correctly and it was very frustrating.
Once I started 'using' the iPad I would get calls from Sarah at night (ok, I have no idea when she would contact me) but I think it was always night and she would 'call' me on FaceTime. Now, I don't want to sound like I am complaining, but my iPad felt like it was about 60 pounds. I was clumsy as hell, fingers barely worked and the iPad felt like it weighed a ton. I bet at least every other time if I even could pick it up I couldn't 'swipe' it open or type in my password. It was completely aggravating but I tried to hide my feelings. Sarah would talk to me on FaceTime, many times with Scarlett and I was grouchy and irritated about how difficult it was to answer. I knew it was selfish and felt bad, but I just really couldn't help it. I couldn't sleep, move, eat, go to the bathroom among other things and all Sarah wanted to do was say hi and show me our daughter and I was complaining about my own problems. Once I figured it out a little better, it became very valuable. Thank you so much for theis donation of this iPad. I now use it all the time, more than my cell phone!!
Now, that FaceTime ringtone I hear from time to time it gives me the shivers.
No this is not my typical post. I don't see myself continuong with thses types of posts, but I did however, feel the desire to mention it tonight. I'm no Saint or Preacher let alone a movie critic, but.. "Heaven is for Real" is a movie based on a family from Nebraska where the Dad is a preacher and his 4 year old son survives a miraculous operation in the hospital. The son shares his time while he was under, visiting heaven. Not my kind of 'movie' but I couldn't stop watching it. I believe that anyone can take something from this story.
No I do not share any real connection with this movie or story, nor does it sway my beliefs. I just feel that it did make me think.
Well today we begin moving. Our goal is to get nearly everything moved in one day and we are for sure planning on sleeping at the new place tonight. Ryan didn't get a chance to see the new place yet as he was in school the times we went and looked at it. (Well, neither did Scarlett :) He doesn't come back to us until Sunday this week so his room will be all set along with everything else being new to him. I know he really loves 'staying' at Nana and Papa's but he understands it isn't 'home' and is excited about the move as we are also. Moving is tough. I am sure everyone has done it. We packed up a bunch over the past few days to lessen the load and have a couple vehicles packed to the brim already. Thankfully we don't move far, still in New Richmond and really only a couple blocks from where we have been staying with my parents. I am going to miss lots about staying here, most of which was spending time with them. Talking like normal, not having to rush things like a quick holiday visit or something like that. Now, it doesn't make me want to stay here longer, or go back to being a kid, but it does have a strange feeling of separation. I do think a lot has to from me getting sick (or else we wouldn't have need to move there) because they could watch the kids, usually Scarlett during the day and I could nap. It sucks 9 months after going to the hospital I am still tired all the time. But, it could last lord knows how much longer for me not getting enough sleep so we are hoping the move will among other things, get me on a better schedule and routine. Scarlett is 8 months old now and I really haven't felt like I have ever been her Dad yet, not in the sense of stereotypical home of Mom and Dad, two kids and a pet kind of way. When we came home from the hospital I wasn't able to do much for her the first 6 weeks other than hold her in our bed. Sarah took care of Ryan, Scarlett AND me. I didn't really do a whole bunch until she started school. Which she just finished her first semester of nursing school at WITC and graduates this May. Yay! Eventually I worked my way to making formula and then to be able to change her diapers. The changing wasn't the big problem, it was actually standing over her changer that was the problem. I am sure I carried her more times than I should have.. sometimes in my walker, while I really couldn't walk well at all. This new home will most likely present it's own problems like most eventually do, but I believe it will be great for us as a family and am looking forward to it. The kids don't know it yet, but we are going to be putting up a christmas tree and decorations this year after all. Wish us luck! lol. Thanks so much Mom & Dad. Time to let me go, again!
Well I was prescribed this lotion for my feet and mainly toes this week that needs to be applied twice a day. Doc says I could have a fungal problem going on, likely related, but probably not directly related to my Blasto. Now when he first said "fungal" Sarah and I kinda gasped, like wtf, a fungus is what gave me this pneumonia! But it's different. I still say this is related to Blasto because I don't think I would have gotten it just on my own. My reason being is that ever since I was still in Bethezda I wore some sort of socks, usually to help protect my feet from any irritation but also for warmth and wearing them made it slightly easier to put shoes on. Now I say slightly because it has been a major issue with anything touching my feet because of how sensitive they still are. Putting socks on is a lot like having a tooth cavity, when it gets touched or irritated, you can't help but wince in pain from the nerve damage in my feet. But I still torture myself and wear them all the time, some started with compression socks, then to doubling up pairs, to now the knee-high tight athletic ones. I probably wear socks now too often or too long of time periods because it hurts like hell to take them off and put on, so I thought maybe my feet were just getting dirty or were staying wet after putting socks on right after showering. I've been through 3 different sport shoes with different sizes, sandals, flip flops, boots, croc's, large fluffy cotton Packer 'boots' and then insulated slippers, but none of them really helped much. The sandals were the more comfortable, but with my drop foot and lack of feeling, I couldn't keep any of them on. I never realized how much you grip whatver type of footwear you have on until recently. Walking on a flat floor was hard enough with most of my comfortable shoes and walking up and down stairs was nearly impossible to keep them on your feet. We finally came along with recently finding an insulated croc as well as an insulated low cut laceless boot. Those both are clearly the most comfortable to wear and I can slip right into them with less pain. This winter my feet and in particular my toes get cold easily and when I go outside or even barefoot in the bathroom and shower they get instanly freezing cold and harder to walk on.
So now back to this lotion.. Sarah puts it on thick and it needs to dry. Well, my feet get ice cold right away but I can't put socks on or it'd mess up the ointment and I can't put them under my sheets in bed for similiar reasons. When I need to use the bathroom I can't put anything on my feet so I hobble slowly holding onto the walls as I go. Fun! Lol. Oh, and I forgot to mention how I hate lotion! The feeling of it on my skin drives me bonkers. Tanning oil, hand cream, gasoline, this stuff, you name it, I really dislike using any of it. I don't like putting any kind of lotion on anyone else either because I can't seem to get the feeling and scent off of my hands. Hahaha. I have noticed in the past two winters that my hands have NOT gotten dry. They used to get terribly dry, I think it was all the different soaps and chemicals I used at work through the years. Curse you sanitization! Oh well, hopefully this lotion does the trick on my toes and feet. And thankfully it doesn't smell or sting or even tingle, so that's helpful. Now, what the hell am I going to do with my feet on our Carribean cruise! Hopefully wear as little as possible much as possible!
One other thing going on is I still have that annoying noise coming from my throat. It isn't as bad as it was when I first came home, but I hear it every time I'm in bed. My throat still tic's, like I have pop rocks candy stuck stuck somewhere. At least my unpleasant choking on carbonated drinks has basically stopped. Rather embarrassing out for a meal and I start gagging like a cat throwing up a furball. I was that guy at the Leine Lodge Tour this summer being thier for the first time, sitting like a fool on my 3-wheel scooter sampling beer, then one of the beers hit me and I start choking on the bubbles and I can't figure out if it's coming back out or going down. Knock on wood, but so far everything has gone down as in this case but I'm still feeling like an idiot and I'm all tearing up from the choking reaction and sweating trying to catch my breath from all the non-walking that I was doing lol. Not sure what is making me get the ticking sound coming from my throat, but it is rather annoying. Better then when I first got out of the hospital though. I had to have my gauze changed from my trachea all the time where I thought I had real issues then, like my lung was dissolving or something fun like that. But, turned out it was harmless then and I guess still is 😛
Been feeling kinda like crap the past week. Lame also because I was feeling better for awhile there that I even cancelled an appointment to see my main Doctor in the cities for Blasto. I originally figured it was the cold that hit Sarah, Ryan and Scarlett. I think I got a slight cold but nothing too bad, except it wasn't going away and then over the weekend I started feeling differently worse. I had a belly ache and took one of my as needed nausea pills, and it seemed to help a little. But I had one the next day and nothing helped and continued to have it again today. My feet have something else going on with them, and I was prescribed a lotion for them to help a possible fungal infection. My toe nails in particular my big toe nails look and feel like they are dying. I still can't feel most of my feet very well, but am still hoping they are continuing to get better overall with my nerve damage. A little over two years ago I got hand-foot-and-mouth and through a few months time all 20 of my nails had fallen out where new ones started to grow, and this feels similar to that as far as just the nails are concerned.
This morning it felt like I was going through some sort of tunnel vision for about 15 minutes or so and was very, very strange. Like I was really drunk and couldn't see straight while also feeling like I stood up too soon and got light headed and could see stars. My dreams the past week have been annoyingly long and consistent. They will wake me up and then I will get up and use the bathroom and the dream stays with me until I get back to bed and it continues until I fall back asleep and keeps continuing well past waking up in the morning. My sleep has been really bad of late. Tired through the day and ready for bed early, then I just can't fall asleep or, like tonight, fell asleep at a nice time but then wake up an hour later and I'm still up and now 3 hours have gone by. Then to top it off I am getting some major brain farts. Not from forgetting something, but it feels like my brain has its own heartbeat and can hear it sometimes. (No I'm not crazy:) You know when you get tired and find yourself head-bobbing in and out of being awake and asleep? Well it's like I do that, losing track of myself for a very split second, and I swear I can hear it happening. Or my hearing has just increased and I'm able to hear my eyes blink. Ugh. Well, I got blood drawn at the clinic and results came back decent although my Doc hasn't seen them yet. He may start decreasing my Vitamin D and my Potassium pills, but he prescribed me a sleep aid and a anti-depressant that doubles as something else but I forget what it is. I'll pick them up from the pharmacy tomorrow. Was not wishing to take more medicine as we've been weaning off some of the meds and I take about a 1/4 of the total from what I was taking about a month ago. My Doctor thinks this stopping and weaning has contributed to my symptoms as of late.
In other news, we are moving out of my parents place here starting next week. I think this will help out in several factors once we get settled in. For one, getting on a little bit of a better routine (although with Sarah's school holiday break coming, it may not feel "routine" for awhile) with sleep, daily schedules, and meals and bedtimes, as well as daily chores that just don't feel the same living here. And for two, trying to be as normal as a family as we can be. I mean I enjoy my time living here with my folks, but it is still difficult no matter how great and accomdating they have been. And it is difficult for Sarah, and relatively easy to understand why. For all the privacy we get here, of course it is just not the same as having your own place. Good thing we are not moving far so I can use the grandparents to babysit and do my laundry while I sleep, kidding :) Love you Mom & Dad!
Well that is all for now, going to try and fall asleep and get some needed rest.
I know you guys like my dreams though haha.
While I will never remember all of the hospital rooms I stayed in because some of them I never was awake for, and others I never actually was in or existed anyway. I still struggle with believing that a couple of my rooms not only had I been in before, but they were actually apartments that I had lived in years before in some point in my life. One room in particular I thought for sure I had been living at before. It was so confusing how they moved my old condo in New Richmond into this hospital up lord knows how many stairs. Of course, it was also my same 'room' that Robbie not only was still a mailman but doubled as my nurse. I 'thought' I remembered this room, where the laundry was, my old land line phone was and I wondered why the front door had moved. This was the first room that I remember having the in-room contraption that they strap me into, lift me up out of bed and carries me into another bed or a wheelchair. I don't remember what it was called, but it was annoying. I figured if they wanted to move me, just to slide my ass off the bed into the chair or roll me over into a new bed. I mean by the time I recall this happening I was well under 170 pounds. But, turns out I'm not the doctor.
Then there were the other times when they had me stay in different places for outpatient care and I would be in some really nice lake house and the owners of the place would watch over me during the night and nurses would come check on me a few times during the day. I hated this. (No, it never happened.) Made me miss actually being in the hospital. They made me sleep in the kitchen and treated me like I was such a pain in everyones ass to be staying there. I'm always thinking to myself, because I couldn't talk or really communicate, then why the hell am I here if you don't want me in your home? So yeah, my bed would be in the kitchen and when they had guests over they would put me in some back hall, the garage or even just outside by the lake. Being outside was kind of cool because the view was nice from my bed on wheels, but it was always cold and rainy. Which was what it always looked like from outside my actual room in March, April and May anyway. I am not sure how long I (thought) I was staying at this home, but it seemed like months. Never saw anybody I knew, couldn't talk, move and even the nurses seemed to only come when they wanted to. Maybe they were turned away at the door to even come in. Not sure, and I was never sure who any of them were or what they looked like and I would be lucky to get changed once a day. I know I always tried to hold going to the bathroom as long as I could, because if there was an accident there would be hell to pay. But I really didn't have any control over when I went other than I knew it was happening. Never was sure why they kept me in the kitchen. One time they left me in there when they did have company over for once and it was dark outside at this point and like normal it was raining. I could hear people laughing and having fun in the next room which was fine and all, not like I really wanted to join them, I was just happy to hear people having a good time and not being sent out to another place so I wouldn't bother them somehow. Then I realized what all the fun was going on about, there was a house party going on with the teenagers of the house as I guess the parents were gone and they were laughing because they were trying to figure out what to do with me and where they could move me this time to. This was an absolute terrible feeling. All I could do was hope this was a dream and I would wake up soon and it would be all over. I didn't care if I was still sick or really where I was, I just didn't want to be there anymore. The party moved from the next room into the kitchen and they continued to party on and have fun around me. Half ignoring me, half interested in me in the way as it was going to be fun for them to mess with me. I was sure I was going to be pushed into some closet or outside or into the lake, anything that would make me fall off my stained bed and unable to move. They eventually did start bringing me somewhere and they talked to me like things were going to be OK but I knew they were joking around. I'm not sure if I passed out or what really happened next, but I don't know what they did to me because a few days later I did wake up, and I was back inside a hospital and felt a little more safe. I wasn't sure which hospital I was in at this time, I think the U of M but either way, I was just glad I wasn't still in that horrible home.
I think this memory of mine didn't help in some other instances, mainly with security while being sick. I remember when I got transferred to another hospital that when I got there, the staff 'messed' with me. I swear to this day that they were trying to kidnap me and take me to some god awful
country and do whatever they wanted with me. I get to this new hospital and they instantly start
giving me shots and kept asking my phone number and other personal information. I couldn't talk but wasn't about to tell them anyway. Most of them didn't speak English anyway so I didn't know what they were trying to tell or ask me to do. Then they started searching for my cell phone. I had it clentched in my hand and wouldn't let go. I did my best to cry out for help, and cry out for Sarah to come help me but I couldn't reach anybody and they finally got my phone. They started using my phone for calls, messages and who knows what else. I was out of energy and they had me all drugged up and finally Sarah came in. I tried telling her what happened and she was at least concerned enough to ask questions. More so why I was so drugged up, not about my phone (which of course I didn't have) and why I was so upset. The nursing staff changed their tune like they got busted for something and she moved me into a different room and calmed me down. I soon fell asleep feeling more safe although I wanted my phone back, I was just happy to be away from all these whack-jobs and be alone with Sarah. When I was awake enough she told me that we were getting away from the hospital for awhile so I could get better. Mentally as much as physically I think. So we went on a short vacation. We didn't tell a soul where we went, and I wasn't exactly sure where we were. I do know it was warm, so I think we were either in Florida or the country of Turkey. Lol. I think Turkey because I couldn't read anything that was in my room. I didn't care. I was in a new place and I felt safe and content and the medical staff was super nice. They were sworn to secrecy too, so they had to check in at the front desk of where we were and then had to beep themselves in while only Sarah or me could open the door from the inside. Sarah had to leave every day for a few hours, and I think she was going to school, so I usually just slept when she was away.
I know I never stayed outside of the hospital. And my dreams and false memories had pretty much all passed by the time I left Bethezda for home in early May, but I can't tell where I really was during both of these stories. Why I 'thought' I was at either place: one terrible, one nice. I honestly couldn't tell you if I was treated poorly by anybody, but I have heard enough stories that I apparently didn't like some of my care givers. I know Sarah didn't appreciate some of them either but if she didn't, she would ask for me not to be seen by them anymore and they respected her wishes. I could probably
tell you less than a handful of all the names of all the medical staff that cared for me, and most did
treat me well, some of course better than others but that is ok.
Had some very strange dreams while in the hospital as I am sure most of you know by now from reading any of my posts. This one isn't any much different other than I don't recall any dreams where I had so many different people I knew being such a large part in my dream.
Sarah was pregnant (true) and just like her to have things planned out and now more so because I was sick, she wanted to get as many pictures of the final weeks heading up to Scarlett being born, the birth itself and time afterwards until I woke up. Her plan also was to not have her be born in New Richmond but get as close to my hospital as possible. Everyday was Halloween. People were in costumes all the time and I never was sure what some of them were and if they were patients, or mental or sick, visitors or just worked there, but we always had to keep an extra eye on them. It was always cold and rainy and even some snow mixed in almost every day. College basketball was well into March Madness and the NFL draft was all over the TV's. (Both of which were true, more or less.) I was always awake (in these dreams) but I couldn't leave the hospital for anything. The nurses would be able to set me up in the lounge and I would watch the NFL draft, the NFL playoffs and NHL hockey and college basketball all day. I know this isn't possible, not so much going to a lounge to watch this while I was comatose, but that all four of these sports were on at the same time lol. But hey, I had other dreams where I was a minor league baseball player on an otherwise all Puerto Rican team from Miami, where every time we hit the field we ended up playing soccer! But that is another story :)
Ok back to this posts dream.. Sarah's photographer for Scarlett's birth was my ex-wife and the hospital she was going to give birth to was in the Countryside Plumbing & Heating building conveniently located next to the U of M. Ever watch Bates Motel on TV? Well that was basically the setting of my hospital and Sarah's hospital during this time, one hospital (the hotel) right next the the other hospital (the home). Sarah would meet with some of the plumbers, I mean nurses at Countryside every day and would go over procedures and ideas on how the day was going to go. Her and Countryside's owner, Tim had everything planned out like a perfect 'wedding' planner would, because it WAS like preparing for a wedding. Sarah would come visit me and tell me how things went in coordinating the birth, and had it all down time day, exact time, how long and what pictures would be taken and so-on. She would do this every day until the day came.
Did I mention my drug dealers? Oh, yeah. So Eric M, aka the hardest working man in New Richmond, was the front desk manager at Countryside Hospital. I would see him every day and while he denied knowing me, he gave me 'prescriptions' whenever I needed them. Sometimes we would sneak out and leave my hospital room and meet up with other dealers. One, also doubled as my chiropractor, who I can't remember his face or name, and the other was my brother. Sometimes these evil three would meet at the same locations so we could get everything done at the same time and try anything out that needed to be. It was odd though, that these three never would recognize me, and I also never actually recall them ever acknowledging each other either. My brother would usually be drunk when I came over and was a little paranoid with his stash, so he had guns in the house and normally wouldn't leave his secret basement. (This is about as opposite as you can get with my brother :) My chiropractor was always trying to come up with these new inventions to help me use the bathroom, as far as preventing me from falling and things like that. Perhaps he never actually gave me drugs, but he was always around the other ones who did and I remember him trying them with me. There was one time I stayed back in the basement by myself when those three went out for a pick up and they didn't return for hours. I was sure they had gotten arrested or shot or something happened and I was going to be there all alone and die. They eventually did make it back but I don't think I went there any more after that. Eric and my chiropractor would now come to my hospital instead! After some days had started to pass my perception of each of their faces had changed just a little bit and I wondered if they were really the same people or if I ever really knew them at all to begin with. Pretty much an in-dream mind screw.
This would go on for some time. And then the day came where Scarlett was ready to show herself to the world. I remember near panic from everybody around, people running back and forth everywhere but I was supposed to stay in my hospital lounge. Talk about a long day. May not sound like it, but while Sarah was having all the fun next door, I was stuck waiting in a lounge eating doritos and watching sports on TV. I mean I think Buffalo Wild Wings made every game go into overtime! Every time something exciting was about to happen in the game, some nurse would have to come in and check my vitals and update me about Sarah. "She's still breathing really well, and it will be anytime now" is what they kept telling me. Blah, blah you make a better door than a window. I'm on 1/100th of a lung here and you keep interrupting my ball games, but fine, Everything is always about her..
Just kidding lol :) It was stressful of course not to be there and this was the probably the best place for me to be to relax, except I couldn't help think about having(?) to see all the birthing pictures once she was born lol. Eventually Dr. Sterba came to me from Sarah's hospital up the Bates hill and told me about Scarlett being born and I got to hold her for a few minutes before he brought her back over to cut the cord and other fun stuff.
Shortly after getting out of the hospital (still dreaming) we went to Ready Randy's and Eric was working and I gave him a wink, telling him thanks for hooking me up while I was sick but I didn't need anymore of his goods. He looked at me like I was straight out of a looney tune episode. Good times. That was about all of the dream that I can recall. My drugs must have been wearing off :)
I have my own conclusions for most of this dream to which may make some sense out of the craziness of it. Although I am not sure if I was actually aware of anything at the time, but maybe I caught just enough from loved ones or medical staff talking to me that some of it stuck in. For instance; I didn't have drug dealers or go to dealers homes, but I was given more than I would like to admit and sometimes I was brought different places or moved to different rooms. My 'chiropractor' was probably a pulmonary worker or someone like that who tried to make things better for me. My brother Jeff never has drank in his life and while he does take prescription medicine for having Cystic Fibrosis, he doesn't do, or sell, drugs either. Eric, was both a friend and an ex co-worker but I must have had a nurse that resembled him in some way which could easily have been the case. Countryside did a lot for my family and our bar during this time. Dr. Sterba is someone we know. Sarah and I watch every episode of Bates Motel. I know the Badgers made it to the Final Four and I missed out on that as well as the NFL draft and The Masters. Kind of funny thinking back on some of these dreams afterwards.