12/13/2024
Friday December 13th, 2024, 3:19am
Journal Entry from John
You may have noticed, I've removed the customary title from update to Journal Entry. It feels more fitting at this point and gives me the freedom to write about more topics that creep into my life and the effects they have on me and how I'm navigating them.
It's been more than 2 months since I've last posted information about my progress. Not that I haven't wanted or tried to, I've just struggled with this latest edition, deleting it multiple times feeling that it may not convey the message that I'm trying to bring across. I've heard from so many of you how you've followed my journey, and from many that have suffered from similar illnesses. It's very humbling to know that in some small way it has given others help in understanding that what they have gone or are going through is not unique but shared by myself and many others.
This Entry was originally going to be titled " Frustrations", and still is the topic. My previous deletions were done in fear of misunderstanding my intentions or mental state. I'm not depressed, nor am I waving my arms for attention. I'm just hoping that by bringing my frustrations in recovery open, no matter how personal, can be a benefit to others.
At this point in my recovery, things have been slower than past accounts where I had gone from a few steps on the parallel bars to walking the length of the rehab center, to driving and living an "adaptive" lifestyle. Every day, week, and month added faith and strength to a recovery that seemed nonexistent in the beginning, but I pushed on. Now, things have slowed and it's the little things that I thought were insignificant that are leading to much greater challenges. Some of the things may eventually be overcome, while others may not.
My back pain continues and if I push myself too much, the spinal weakness can cause the muscles to spasm sending gut wrenching pain up my back through my rib cage and my shoulders. I best describe it as being hit in the back with a baseball bat, stinging with intensity and taking my breath away. It only subsides when I can sit and support my back. This can happen when I'm sitting without back support or have walked to much without upper body assistants. I can't stand straight or tilt my head back all the way, and reaching above my head is very difficult. I have managed to dead lift and carry heavy objects, but taking a soup bowl off the shelf is very burdensome. If you've seen me lately you may have noticed that I walk slightly hunched over, leaving balance at times awkward.
Those of you that have knee replacements know how crucial it is to work on flexibility after surgery. Therapist will tell you that bending them to at least 115° will give you more of a normal lifestyle. Mine are currently between 88° to 90°. Therapist worked on them for months with little success. There was just too much damage from the infection. Bone, skin, and muscle destruction, plus the unknown lifespan of the antibacterial knee prothesis also played a factor in this. The overall contributing factor to the poor recovery goes back to the infection in my spine. The pain from my back kept me motionless for nearly 3 weeks. Every hour that past caused the joints to stiffen and the muscles were left to shorten and weaken. This issue has caused many problems that have persisted over the twenty-seven months. I began driving again a year ago. Fortunately, our SUV has adjustable pedals and lots of leg room giving me the ability to maneuver from the gas to brake pedals easier. The bakery delivery van and Cindy's mini van requires more flexibility due to shorter leg room. My little pickup has the leg room, but the door is narrow leaving me with some interesting acrobatics to get in and out.
My knees have also given me trouble with sitting then standing from standard chair heights. Normal seat heights range from 16" to 18". I have found the best heights for me are 20" to 24" with the higher of the 2 not the most comfortable on the back of my legs. Sitting issues have also led to another problem area, the bathroom. We remodeled our bathroom 3 or 4 years ago with not only the intention of freshening an aged and dated look, but to ready ourselves for our "senior" years with a more accessible walk-in shower, grab bars, and a raised toilet. I'm in full belief that we did it right, but.... or should I say butt..... (mine in particular), has to have a 4" riser with grab bars on top of the "raised" commode. This issue again is from my knees. This also makes traveling a little awkward having to tote my large white plastic camode elevator for all to see. Kind of screams out " Hey! Guess what he's gonna do!"
My biggest frustrations to date are my hands. In fact, it's lead to some very angry and anxious moments. Besides my legs, my hands were the most important tools I had as a baker. My fingers. with the slightest of touch could tell me so many things about the dough I was working on. From the texture, the tightness or softness, the temperature, and the dryness could not only tell me the type of dough, but the development of the gluten and its fermentation. They kneaded and shaped loaves of bread, sprinkled seeds, placed rounded buns on baking pans, rolled and cut long johns, pershings, peanut butter rolls, and Danish. I once could pick up 3 hamburger bun dough balls in each hand, placing that half dozen down evenly spaced and right side up. Now only 1 per hand. With the feeling gone from nerve damage, the loss of use of my ring finger and pinky on my right, and the fusing of the middle finger on my left I've lost the ability to not only grab but to delicately handle the products. Lately, I've volunteered to slice and package buns. Even there I have to be careful. At times the three fingers decide to poke wholes, or drop buns as I slice or package. My most irritating packaging is the dinner rolls. I try to be as neat and precise in my effort, but they seem to have a mind of their own. I place them 1 at a time in the bag, 1 layer of 6, then a top layer of 6,(if you have 30 dozen, that's 360 times). It never fails that they need to tumble off the top layer, sometimes by themselves, but generally it's the 2 deadbeats on my right hand. If you happen to purchase a bag of dinner rolls and you hear #* #** # and some blue air rolls out as you open them, I'm the guy!
Other issues with my hands are equally frustrating. Using utensils are very difficult. When using a knife, I first pick it up with my right hand and place it in my left, positioning the handle on top of my hand between my thumb and index finger, then grabbing with both. With the fork in my left it gives me downward pressure to cut with. Large glasses I now grab with both hands to steady and keep from dropping.
Here is an important exercise you should do and do often. Practice using your non dominant hand for simple tasks. Eat, write, type, pick up coins, etc. Just do it. It's worth the time. My last issue with my hands takes us back to the bathroom. This is where the previously mentioned practice is needed. The first time I successfully used the throne I realized that I had a problem. I have been right-handed for 64+ years at that point, but couldn't hold the little white squares with 3 good fingers, and if I did, where would the other 2 end up? Needless to say, my butt and my left hand are now best friends. Degree of difficulty......9.8.
My final issue that frustrates me is the meds. I've mentioned before that I had been having some side effects. Some have been quite bothersome. One drug in particular if furosemide. With the damage I've had to my legs throughout the years swelling is unfortunately an everyday occurrence. I've taken 40mg daily over several years and it does the trick. This past year though, it's been kind of a nightmare. As it "flushes" out my system, it really flushes out my system. I take them early in the morning when I'm still close to the facility. When the urge hits, I need to be there, and this will go on for several hours. It's OK, it works, but back to the hand issue.
I can't run the zipper up or down on my pants. So, I now wear either sport shorts or double flex jeans for easy removal. Also, with the added feature of the "high rise", I utilize a handheld urinal to keep things clean. (I also keep one in the garage for those urgent moments).
I am aware that many of you may think it's "too much information", but it's life. It's how I've had to face it, and many others suffering from the same issues. Hopefully, with a little blunt info, it will help someone that needs a lift today and set them forward to conquering the steps that sometimes are difficult to take.
On a final note. After waiting nearly 6 months I finally got in to see a cardiologist.... well, a PA, but he was really good. I liked him. After some Q&A the decision was made to have a nuclear stress test (call me blinky) to check for blockage and have a heart monitor for 14 days. Good news. The stress test showed that I'm clean, no blockages. Today is the last day with the monitor. I rip it off tonight (along with my remaining chest hair) and send it to Houston. This will tell them if the Afib is still an issue. Results will probably be after Christmas.
Speaking of which
Have a wonder Christmas and Holiday Season!
Love you guys
Never give up!
John
p.s. If you're up to a challenge.... use your left hand... it washes off!
