Life is intense: Another medical post

Earlier today I was hit with a realization, a moment of clarity if you will. I realized how much I have gone through in — less than a month — and actually had to sit down under the weight of it all. And that was only in terms of the doctor appointments, procedures, and tests I’ve had to deal with. It didn’t include fun things like brunch with a bunch of good friends or the wonders of FaceTime.

All within the last few weeks I’ve gone through multiple GI tests including an endoscopy, a multiple day “study” to check my stomach pH and see if I really am having acid reflux, and a gastric emptying study. All of these provided useful but slightly conflicting information. I have collected yet another diagnosis. I don’t want more diagnoses but it seems, lately anyways, that answers bring diagnoses.

Because of my (new) gastroparesis (a word that my browser does not recognize), I have to adjust my diet again. I have to relearn how to eat. In some ways I started to feel better rather quickly once I started adjusting my diet. However, there’s a pretty steep learning curve to relearning how to eat at the age of 34. There are now more foods I am supposed to avoid. Before this I had a very restricted diet because of my allergies and intolerances. Now, I can’t think about the restrictions or I want to scream.

But that’s not all. I also went through an EMG “of my upper extremities” which just means my arms had electrodes attached to muscle groups and then needles poked in those muscle groups. Thankfully my doctor who performed this test is very gentle. Then yesterday I spent five hours with a psychologist going through neuropsychology testing. Five hours. You cannot even imagine the level of brain dead I was by the time I got home. The testing was mentally exhausting and also depressing when I stopped to think about all the times I struggled or ran into a (metaphorical) brick wall. Then there was also the back and forth to my GP doctor’s office for an infection. Because when you’re sick all the time, getting “normal sick” is even more difficult. And thankfully the allergic reaction to that antibiotic was not anaphylaxis that landed me in the ER. (Been there, done that, already have the tshirt.)

Yesterday, I decided any time I have to fill in the “occupation” blank on a doctor’s forms I’m going to say “professional patient.” It’s exhausting keeping up with all my doctors, appointments, and keeping my own medical records up to date. I need to find a way to make this a job where I can also provide doctors with feedback of their office and procedures.

I’m scared that I’m going to still load more diagnoses on top of everything else but I’m trying very hard to stop myself from falling into that deadly cycle of thinking. I cannot get stuck thinking like that. Still though, I wonder what a “normal healthy” person would do if suddenly faced with the amount of doctors and appointments that I’ve been dealing with. Every appointment meant sitting (or standing or pacing) in a waiting room and having little control over a number of events. You think it’s bad to sit waiting for a doctor for 15 minutes? Fifteen minutes is actually good! You think it’s annoying to have to go to the doctor? Try having two different five hour tests in a two week time period.

Sometimes I wonder how I deal with it all. I know my friends help so very much. My cats and my husband help more than I can really fathom…. but I also spend a great deal of time alone. Anxiety and depression continue to be very real and scary problems for me. I have no idea when “things” will “calm down” again. At this point in 2015 I’m happy I haven’t been to the ER (yet) this year. I really hope I can find some kind of normal in the next few months. Normal is having nothing out of the ordinary (health wise) happening in at least 2-3 months. That means nothing that I don’t already have a plan for coping with.

I’ve finally stopped asking “Why me?” but now I find myself asking “Don’t I have enough already?” It’s intense and overwhelming and the average person probably cannot even begin to imagine let alone actually understand what it’s like to live as someone with chronic disease and chronic pain.

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Motions

This probably applies to lots of things so that’s why I’m throwing it up in a blog post. Right now, it applies to my life as a full time patient living along side multiple chronic diseases. Side note: People with chronic health diseases often have anxiety and or depression.

 

Going through the motions

The alarm starts playing music and your eyes crack open.
Crawl out of bed in the morning.
Shuffle to the bathroom.
Stumble to the kitchen.
Collect the foods necessary to build a breakfast.
See the husband off to work.
Now you’re alone with the cats.
Eat breakfast not because you’re hungry,
but because you need to take your meds.
Check your calendar. When is the next doctor appointment?
Nothing today. Breathe a sigh of relief.
Shuffle back to the bathroom –
take the rest of your meds.
Is it a bad day?
Then sit on the couch wrapped in a blanket, staring at Netflix.
Is it a better day? Have your meds kicked in yet?
Then find a book, or knit a sock.
Around noon, gather foods again.
Eat again. Maybe you’re hungry this time.
Check Twitter. Wonder how the little people inside your phone are fairing.
After lunch?
Maybe you can wash dishes or collect laundry from the bedroom closet.
Maybe you can care for the cats.
Maybe you can knit some more.
But maybe you’ll need to nap instead.
Check the freezer. Make plans for dinner.
Wonder where the day has gone. Check Twitter again.
Have a snack. Chocolate sounds good.
Don’t forget any meds.
Before you know it, the day is mostly gone. Your husband is finally home.
Dinner time.
Your husband cooks. Some days dinner is the best thing.
After dinner?
If it’s a better day maybe there will be some game playing, or some conversation.
If it’s a bad day, there won’t be much of anything. You’d be sad about the bad days if you could think through the fog.
Then it’s time for more meds.
Then it’s time for bedtime, and more meds.
Finally, you can go back to bed again.
When will it be easier? Maybe tomorrow it will be easier. Maybe tomorrow is finally the day.

There’s no way to know.

Tomorrow you go through the motions all over again.