Tuesday, May 12, 2015

My 2nd life... One year anniversary

Saturday May 9th marked my one year anniversary of coming home. I didn't sleep the night before as I was soooo excited to get out of the hospital. Earlier in that week I cried tears of joy when one of my Doctors said he would approve of me leaving. That night was the 'Cheers for Cheek' benefit for me and my family at R&D's. It was the first time I was with Scarlett, Ryan and Sarah at the same time. The night was pretty fuzzy overall but I remember quite a bit. Like my long time friend Tim Deyoung being overwhelmed with emotions seeing me alive. Like the large group picture from all the guys who donated the Lombardi Super Bowl trophy to be raffled off. Cory Mitchell winning the drawing for the trophy and then donating it me. Aaron Kizer pushing me around in my wheelchair so I could look at all the donations. Ryan being so excited and getting involved in the auction. Scared to use the bathroom because I wasn't sure if I could do it alone. Glenn Owen and Kyle Hinrichs physically lifting me into our jeep to go home. So many wonderful people. So many who came just to say hello, to tell me that I didn't know them but they followed my progress and had to come meet me. I really wanted a beer but I figured it would either look bad, or I'd throw up, or both. The place was packed and I was overwhelmed.  It was a gift to be home and to be alive.

This is what I remember and many of you saw and were a part of.

Maybe all the details are not correct, but I was obviously not myself. The next several weeks I don't have much memory of. I believe it was June when I decided I needed to come out of the house for something other than rehab or appointments and I saw our bar for the first time. Sarah brought me there before it opened one day and it was very emotional. Then we figured we better have some  friends over and allow them to see me doing a little better. Chris Hays told me they were expecting another child that day. I have a picture of me and Sarah and the two kids on our deck, and I looked horrible! My arms were so skinny and it was about 60 pounds ago. But I could stand and balance myself using my hands on Ryan's head. I think he enjoyed it (I still use this method sometimes:)
Soon we had a wheelchair accessible stairway put in at our home by Eric Becker and his crew.

Back at Bethesda not all the medical staff believed I was ready to come home. Only a couple days before I left, they wanted me to stay 4 more weeks, which would have gone into June. My therapists didn't approve of my leaving either and wouldn't sign me off as OK. But they couldn't just keep me, I needed to come home. For my own sanity (which was screwed up anyways) and for my family. I needed to be home for them as well. Of course the medical staff and therapists were right, I was in no shape to come home. I couldn't shower or bathe myself, get on the toilet myself, get in and out of bed myself, keep up on my medications myself, and feed and clean my feeding tube, or really get any food for myself at all. For the first week or more I was in nearly total care of Sarah. Didn't mean I wasn't upset with some of the medical staff. Part of me felt like telling them to shut up, I knew what I was doing and I'll be fine. The other part of me just felt like they wanted to keep me longer so they could charge me more and treat me like crap. I was angry and frustrated and sad. I really didn't understand everything that I personally went though, partly becuase I had no recollection of so many things, but also becuase I couldn't see the near or distant future of what and how things would unfold. Maybe I was selfish, but it was and still is hard to say. I know they treated me well but it didn't matter at the time. Sarah was so unbelievably strong and she never showed anything but joy and encouragement. Even when I got grumpy. Which happened often. It is difficult to accept when your wife tells you the truth about something and you know it to be true, but your brain won't accept it. I had to force myself to lie to the doctors. Becuase if I told the truth, I would only be crazy, literally. Talk about a mind screw. ["lie to myself by telling the doctors what I think I knew what they wanted to hear, so I wouldn't sound crazy, although I think I am crazy because the shit I'm 'seeing and believing' is wackier than a crazy person would act, so keep up the act of pretending I'm ok while I know I'm not so I can go home"] check!
Fortunately enough, I went into the hospital at genius level intelligence and was at top physical form. Basically I was Iron Man and Captian America at the same time. Lol. Thankfully I never told my doctors that or they'd have gotten the restraints back out!

Sarah had month old Scarlett. But we soon installed bathroom braces and chairs to help me in and
out and I remember the first time I stood up to pee, it was great. But nights I still had to go so often I
used my plastic urinal for about a week until Sarah threw it away lol. I needed that. I was pissed (ha) at first, but I could get to the bathroom on my own and needed to start doing so. She knew me better than I knew myself. Rehab at Westfields was slow and painful but each week I improved. I didn't notice much change but everyone else did. My strength was coming back. Later in the summer I went and did some testing to see how my brain was functioning. I failed my cognitive tests as I couldn't figure out some of the memory questions and tasks they asked of me. This was super frustrating becuase I felt like this was something a 10 year old could figure out, and I wasn't able to do some things correctly and this is why I failed. I would like to take this, or a similiar one over, to see where I'm at, but it hasn't been necessary yet. Been one hell of a year. Wow. Neuropathy sucks. Blastomycosis sucks. Life is great, and so is my family.


P.S. It's been over 14 months since we have worked, (been self-employeed) It has been a struggle and will continue to be so for awhile, but we made it. Sarah was able to get her (2nd) degree and starts
her (new) job and we will be getting a steady pay check for the first time since 2012, which was right around when we got married. Three year anniversary will have special meanings this year.

Wednesday, May 6, 2015

Potassium, Legs

Had my Potassium levels checked yesterday at Westfields. Shows I'm on the lower end of the safe zone but still safe. I stopped taking my Potassium pills when my prescription ran out about a week ago and I've been getting really sore legs and feet lately. Feet pain isn't new, but it has changed. Leg pain has been new. Didn't see the probable connection there. Since the weather has been nice, I have been going on nearly daily walks, depending on the weather. Sometimes I walk to Ryan's school and pick him up, or else I just walk on days when he's not with us. Either way I walk with Scarlett in her stroller. She enjoys the walk as well. My feet and legs are sore but I really need the exercise and to keep building my strength back. Sarah thought this 'new' pain was probably from stopping my Potassium pills. I wasn't sure, thinking you know your own body better.. Well I've been eating two bananas a day since Sunday and the pain has lessened some. Mornings are still the worst for my legs, while nights are typically the worst on my feet. I think with all my walking I'm not stretching enough, which turns out to basically be the story of my entire life, as I have never been very flexible haha. Sarah was talking with her co-workers at her practicum site and about how my body isn't used to not taking the Potassium pills and that while the bananas help, I'm not used to the change yet. I guess I'm finishing up another withdrawal stage. I'm such an addict! We have an elyptical in our home but thinking of getting rid of that and looking for an excersie bike. Would like to get my heartbeat going up a little higher instead of just getting muscle back in my legs. Maybe I'm wrong here, but it's just how I feel. I can only walk so fast, as for one it hurts, but just as complicated, I'm not walking normal. Last summer we got one of those 3-wheel pedal bikes with the big basket in back. Was strange being able to bike/pedal almost like I was used to, eventhough I couldn't walk more than a few feet by myself. My legs while pedaling felt great. We got that bike though, becuase I didn't have to balance it with my feet, it would balance itself. If and when I put my feet in the ground it hurt like hell so I figured I'd end up falling off my regular bike and messing myself up badly. My feet, especially my toes are still very sensitive and always numb. My drop foot hasn't healed completely yet either, so the lift of my ankles is rather difficult so I take shorter steps with a gimpy limp. I can't wear sandals, slippers or flip flops on stairs becuase my feet won't lift enough at an angle/arch to allow them to stay on my feet. Oh well. At least the massive sisitivity is slowly subsiding, as I don't cry putting socks on anymore and don't have to try and let the water from the shower not hit my feet. It is amazing what just a little bit of padding will do for my walking ability now. Can be on a carpet or wearing socks or shoes and I feel like I'm walking close to normal again, but when I hit hard floors with out any padding on my feet or in the shower I am quickly and painfully reminded how difficult it still is. The ball of my feet/toes swell a lot still so I'm still in a shoe 1/2 sized bigger than I used to be. It's been great though, becuase I've been able to play outside with the kids, chasing our little now walking girl around everywhere, but just as great being able to play catch or just fool around with Ryan again. I'm getting a little sun on these beautiful spring days and enjoy our walks. Would like to be able to work up enough to be able to get a good sweat going instead of just walking until I'm tired. It's almost bikini season and all that weight that I lost from getting sick and got me creepy weak and skinny is back haha. Unfortunately I'm not as active as I was when I was working all the time, plus I'm way older now! Haven't been able to bust the bikes out yet, but hopefully this weekend (although it looks like rain and it's Mothers Day:)

Been trying to get back to writing on my blog more, but it's been really busy at our house and in our lives lately. Much been going on that I will get into later. I was giving myself a 75% chance to win the lottery in April, but they must have the wrong address. It would come in handy right now. Oh well. For now, Sarah graduates this month tho so she can finally start doing more stuff for me that I deserve lol. Love you!

I'm not sure if I've posted all of my blogs especially lately. Check them all out anytime just at www.theviewsofcheek.blogspot.com

Thanks all !