Journey to Health, or why I torture myself

Let's talk gymlife for a minute.
For some people, including me, going to the gym isn't as simple as putting on workas out clothes, grabbing a bottle of water and walking in the building.
It's almost a ritual for me, a fine line balancing act, and I nearly have it down to a science.
I try to check my blood sugar about an hour before I go. If it's 175 our less I need to jack up my carbs.  30-45 minutes on the elliptical will drop me 100-150 pts, which would be dangerous if to low. I try to take a cup of vanilla Greek yogurt with fruit mixed in, and granola to sprinkle on top to work with me for a pre work out snack. I will drink a soda with it, if my sugar is to low. Sugary drinks will raise blood sugar fast, but will result in a fast crash also. Protein at the same time will balance that out a little and help to stabilize blood sugar(yogurt has decent protein).
Then I have to keep glucose tablets at hand, just in case I didn't estimate my sugar need high enough. I can't easily have them on me while working out, so I keep them in a locker, so then have a lock I need to try to remember the combo for as my brain is slowly shutting down. I often write the combo on my wrist so I can show someone if I need to ask for help.
Pain is the next issue. Sometimes walking from the car to the building is difficult, the elliptical would be impossible except for my pain meds.
I try to medicate about an hour before I go, so they will be at their peak. If everything is perfect at work it will work out. Sometimes its not and I can't even guess when I will be leaving. So I medicate just as I leave work. That means I sit in my rig and wait for the meds to kick in, burning precious sugar that I already jacked up. Even sitting you burn carbs from breathing and your heart beating, as well as your brain thinking. It's not much but when you try to keep your carb intake up just enough to handle the workout it can throw things out of whack.
Then you finally get in the building, lock your stuff up and head to the elliptical. Step up and start moving. And then you realize that it still hurts, badly. You try to push through it, knowing that though it hurts, it's not doing any damage. You end up stopping every 5 minutes or so, and after 20 minutes of that song and dance you just give up, especially since it really doesn't feel like much of a work out with all those stops.
Grab your stuff and head home, knowing now your blood sugar is to high and you will have to take insulin to counteract the carb loading.
The guilt hits later. You know you need the exercise and you really did try, but that effort that was all for nothing has now taken 2 hours out of an evening you could have spent with your husband. So you decide to take the next day off to spend with your partner and family, but feel guilty because you know you really need to work out. The circular thinking sucks.


Don't judge. That person going slow, stopping often, and quitting after just a few minutes may have a chronic condition that makes it difficult. They may want to do more, but it's physically impossible.


























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Strong for Life, Or how do you do what you do

I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.

Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids,  hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.

Life, Death, and how to decide.

Lee told me today he hates taking all these pills and he wants to talk to the doctor about stopping some of them.
 I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
 We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
 The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
 The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
 It looks like a lot in his pill box but I know realistically it's not that much.
 I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
 I have known for many years that my happily ever after won't be forever after.

My cynical life

I hate doctors. Each time I take Lee to one they point out something I should have seen. Something that shows a progression of the Parkinsons. I live with him. I'm with him every day. I see what's happening. Yet I don't really see it.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.

safe storage of canned foods

Lee has an MRI on Wednesday. It's a routine follow up for the aneurysm, we aren't expecting any surprises.

I see a new doctor the 31st, a pain management guy. I'm hoping he can help, though realistically I've given up hope.
The focus will be my SIJD, but I will be approaching him with other problems.
A few months ago I got extremely ill, temp of 103 type sick, but no symptoms other than extreme pain all over. Labs were perfect. I was just sick. I got over that but about two weeks later I started having joint pain and deep muscle aches. It's been slowly getting worse.
I am often spending 12-16 hours a day in bed. I wake up with my hands and feet aching badly. As I start to move it just progresses, until my knees, hips, shoulders and elbows ache. I live on Motrin, flexaril, and hydrocodone most days, just to be able to function. So, I will be bringing this up with the doctor. I have a notebook I'm making notes in for him.


I have so much to do  on my days off this week and frankly I'm not sure how I will manage, I guess same as I do any other day.
Cookies, canning, quilting make up the bulk of it. I haven't even started this years gingerbread house, I may call it quits on that.

Most disappointing and weighing heavily on me is toys for tots. I haven't been to volunteer at all this year yet. Every other year I have been almost every day. I just haven't felt up to it physically.

As mentioned above I have canning to do. About 20 lbs of citrus stuff and Saturday I will have 21 lbs of pineapple. I'm also hoping to make apple pie filling and can it and some honey glazed carrots.

Speaking of canning I need to share an experience I had today. I was putting something in the pantry and out of habit I lightly skimmed my finger across the lids. I got to the beans I canned last summer and right away the lid slides right off one. I knew it was bad so went to dump it down the garbage disposal. When I upended the jar I noticed the bottom bulging.
So, it really showed me why you shouldn't store your jars with the rings on. If the ring had been on it would have given the appearance that the lid was sealed, and it likely would have resulted eventually in the jar exploding.
Many bacteria that can reside in canned foods produce gas as they multiply and grow. That gas will cause the lid to loosen. If the ring is off then that will allow the lid to do what my beans did, to slide off. The bacteria and gas are colorless and oderless and if they had been eaten it could have been very bad. The most likely cuplrit, and one of the most dangerous, is botulism.
So, that is why we store home canned foods without the rings on.