I decided to research why I feel guilty. Wow! This woman and I have a lot in common. Guilt: The worse symptom of chronic illness.
I found a whole slew of blog posts about feeling guilty for being chronically ill. See….it’s not just me. Whew! I think my guilt started when people were disappointed in me at several points in my life, and then I took up the chorus in my own head. It makes me mad that I do that.
The worst problem since my 2 courses of antibiotics is my hernia. The new ripping of the fascia has caused even more of my intestines to pop out. That has affected their function. Every morning I wake up in tons of abdominal pain. This morning was the usual tightness and pain. Then I went back to bed and woke up 4 hours later. OMG!!!!! That’s a new height of tightness and pain.
I am very frustrated because there is no doctor that will offer help or guidance about the hernia. They all just look scared. There are mechanical obstructions, making it difficult to go even if I have diarrhea and most of the time, I cannot pass gas, either. Instead, my whole hernia area swells up. I thought that was painful before the coughing! Now the new ripping has made it wicked, wicked painful.
Luckily there is one way to help, that I have found. If I get flat in bed, I burp for about 10 minutes straight. But while I am asleep, the swelling gets so bad that it impinges on my diaphragm and lungs. When I first stand up, the pain is sharp and unrelenting. I have no clue if anything can be done to make me better. I did it again…I tried to research incisional hernias and was totally grossed out and freaked by the pictures of what can happen next. Sigh…
I got a comment from someone thinking my droopy eyes disqualify me from driving. Well, if I were to drive when my eyes are shut, that would be stupid. With decent MG treatment, my eyes don’t droop so bad. And never do both eyes close in seconds and stay that way. The weakness gets worse over time. Each time I get steroids or IVIg and usually antibiotics or Mestinon, my eyelids go back up. One sure way to make my eyelids stay up is to keep them cold. There is a huge difference between when I am going into myasthenic crisis and the day to day ups and downs. It’s not very newsworthy for me to mention my eyelids are only slightly drooped. Here’s me as I write. The worst part is that my MG smiles look more like a grimmace :-p
I think the most challenging part of driving will be to find a vehicle that has a steering wheel far enough from my hernia. That darn protrusion takes up a lot of real estate. I gave up driving for many reasons. The biggest was that I could not afford to own and maintain a vehicle. There was no money left over in my budget for insurance, registration, gas, repairs, etc. The next biggest reason I no longer wanted to drive was West Nile Virus. That stupid disease had a profound effect on my brain. I felt absolutely overwhelmed by sites, sounds, movement and light. I will probably always have a vestige of that, but it’s minimal compared to 3 years ago. Arghhhhhh!!!!! I have been through soooooooo much while in Utah! It really is a miracle that I am still alive and kicking.
I will be 60 in January. I might still have years of life left, I might not. When Heather was born, I clinically died. After blood transfusions and around the clock care, I was brought back from the brink. Much of Heather’s young life, I got so sick that doc’s thought I was going to die many times. I honestly didn’t think I would make it until she turned 18. This year she will be 32 🙂 I think I have more lives than a cat! But when God recalls me, I will go. I am glad we don’t know when that is going to be.
My father died when he was 55. From that time on, I tried to live life as fully as possible, as if I, too, might die any time. I am very, very glad I did! My father put off fun until after retirement, then didn’t get that far. I am soooooo glad we took the trip to Mexico when we did. I could never do something like that now. And I will never forget our trips to Disney World. I still had enough strength to enjoy myself. I went through a very difficult recovery after my last big stroke and then again thanks to WNV and the hysterectomy. Each time I strive to live through it, get better and reinvent myself. This last stretch of extreme disability has been rough. I keep getting older and I keep getting more disabled. I miss the Wendy with hopes, dreams and abilities. Now I have to work with what’s left.
Sitting still in a senior apartment building, watching drug deals is not my idea of quality of life. Each year in Vermont, I would announce when the winds of change had started. Well, it’s here in Utah right now. The trees alongside my building and the red ones in direct line of sight out my window are losing their leaves like crazy today. The winds have been swirling around and it feels like a turning point. I am ready to turn into something/someone new.
There’s an article about a young engineer who works at Google and sleeps in a box truck in the parking lot. He says he is able to save 90% of his income by being frugal like this. I read about half a dozen versions of the story. The comments are what fascinate me. I think the guy is being smart….a lot of commenters think he’s not. No matter who you are or what you do, there will be people with wildly different opinions. That’s why we each need to seek out what WE want, not what someone else thinks is better for us.
If I had health and money, I would be living very differently than I am now. The challenge is to figure out how best to get by and even have joy with the circumstances I find myself in. If I could, I would choose to be healthy, wealthy and wise 🙂 But…I have this body to work with and a small amount of income. Now what? I am always curious what people would do if they were me…..but that doesn’t mean I want to do what you would do. Many low income people in my situation are OK with living in a place like this….or so it seems. But talk to just about anyone here and they wish they were somewhere else. That seems to be why so many numb themselves with drugs and alcohol. They give up all hope. There are days I feel like giving up, too.
I really need to get closer to sea level. It’s hard to breathe at this altitude and in the constantly polluted air. The other thing altitude does is increase depression and suicide. In Utah, suicide is the 6th leading cause of death…..and Utah has the highest rate of antidepressant use in the country. Personally, I think the hard-line partisan politics and white Mormon male privilige is also unhealthy. Like I have said….how things look here seems way more important than how things really are. What people say they believe at church has little resemblance to what business men do.
Yup…I have had it with this place!