Tummy Troubles

Sooooo...

Hmmmm....

Yeah.

This is a tricky topic. But one that is becoming more and more a problem for me. Gastroparesis has reared its ugly head. I've been having either constipation (mostly constipation) or the opposite for about six months now. I've adjusted my medication as much as I can, but it remains a serious problem.

It started when my migraine injection dose was increased. It completely shut down my digestive system. I mean 100%. It took a week and multiple drugs to help me over the hump. I never took that dose again, but similar issues have lingered.

I am gluten intolerant. Eating gluten tends to give me diarrhea. So lately I've been eating a little gluten here and there just to try and feel normal. It's not really working. I can feel food just siting in my stomach and not going anywhere. This makes me bloated and gassy. Wow! Can you say sexy? It just isn't moving along like it should.

I started taking a probiotic. Nothing.
Eating yogurt. Nope
Taking OTC stool softener and Metamucil. Huh uh.

Chair Zumba

I even started doing "Chair Zumba" with YouTube to try and get my blood pumping a little bit. It made me feel better in other ways, but did nothing for my tummy.

The only thing that has helped a little so far is this tea.

I found these recommendations online. 

• small, frequent meals
• avoiding raw or uncooked fruits and vegetables
• avoiding fibrous fruits and vegetables
• eating liquid foods such as soups or pureed foods
• eating foods low in fat
• drinking water during meals
• gentle exercise following meals, such as walking
• avoiding fizzy drinks, smoking, and alcohol
• not lying down within 2 hours after eating

Small changes in diet, such as eating soups, may help people with gastroparesis.

I'll have to give the recommendations a try. 

I don't know if this is just part of Mitochondrial Disease or a gift from my family? My mother said both she and my Grandmother have/had the same issues. All I know is it's new for me and something I'd like to get rid of.

Brain Fog

There are many symptoms that go along with my mitochondrial myopathy, but one that I find to be rarely discussed is brain fog and short term memory issues. It's one of the many reasons I can't work anymore at the job I used to do.

"The highest concentration of mitochondria are in the nervous system, brain system, and the spinal cord. For this reason, the most commonly experienced symptoms are of a low functioning brain or nervous system. This might present as brain fog, memory issues, poor concentration, mood swings, and sleep challenges."

Or even more cheerful news...

"The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures." (from NIH)

My migraines can also cause some memory issues, so I unfortunately get a double whammy. My memory becomes much worse as my body symptoms increase. This means if I'm battling an illness or even just having an asthma flair because of the weather, my brain becomes very "foggy." This is the perfect word because I do feel like I'm behind a fog. Like I'm a few drinks in (which is one of the reasons I don't drink alcohol).

My auditory memory is especially affected. Recall of recent things (working memory) is very challenging for me when I'm feeling this way (like right now. Thanks crappy air quality!) My family are all aware of this challenge for me and are sweet and patient. My grandmother suffers from severe dementia, so this is a very scary symptom for me.

Like all of my symptoms there seems to be very little that I can do about it. I take my supplements and push through regardless. Since it is an invisible symptom though it can be hard for me and the people who love me to remember and address. I can get quizzical looks of disbelief when I can't remember something very simple, even from my family. It's understandable. I'm young(ish) and "shouldn't be having challenges like this." But it is a part of my muscle disease and I have to remember to be kind to myself when it happens. That's something I still find challenging. 

Thank you to this girl on Instagram who talked openly about her memory problems with her Mitochondrial Disease today. It's always helpful for me to find others who have similar challenges. 

This is Hard!

 Here's how things stand on me trying to change my eating habits for the better.

1. This shit is REALLY hard!
2. I apparently don't eat enough protein
3. If I ate as much protein as I "should" I would never poop again
4. I'm still eating too large of a dinner
5. I hate thinking about this as much as I am
6. I'm glad I'm tracking with an app because how I think I eat and how I really eat are so far apart you could steer a cattle drive through it (Mmmm... running burgers...)

Here's some of the evidence that my eating isn't consistent even though I think that it is. These are screen grabs from My Fitness Pal, the app that I'm using (no affiliation). 

See! What the hell!? I knew that dinner was my largest meal (typically), but come on!

Ok... so I also have the awareness to know that it has only been a week and that most people suck when trying something new. Apparently eating like this is a skill and like any skill it will take a lot of time and practice to master this.

Now if you'll excuse me I must take a laxative and eat a boiled egg.

Portion Size Confusion

I looooove food. 

Food and I have been having a passionate love affair for years now. Decades really. I have no idea when food switched for me from being tasty and something I had to do to stay alive to something I live to do. I don't feel it's healthy for me and I don't want food to take up so much space in my life. Enter my plan to eat six smaller meals a day. Yes, this is for my health, but it's also a way to educate myself about food and renew my relationship with it in a hopefully healthier way.

It's only been two days since I've changed how I eat, but I've already learned a lot about myself.

1. I have no idea how many calories are in something. My guesses are always WAY off.
2. I like eating healthy foods.

Seriously though. I looked up a portion size, then measured or weighed out what that is for each of these foods. Would you have guessed these are one serving size?

I thought I would be starving eating so little, but when I'm eating every 2 hours I don't think my body has a chance to feel hungry. Yesterday was the first day I kept actual track and set alarms on my phone. This isn't me being obsessive, but instead trying to learn what six meals a day really feels like. It's new and I need help learning.

I prepared some easy to eat things this week for in-between meals. For other meals (like dinner) we have a weekly menu board in our kitchen. My husband also wants to eat less, so that makes it much easier!

• Already sliced and prepared fresh veg
• Boiled eggs
• Salted roasted peanuts
• Avocados
• Cottage cheese (whole fat)
• Fruit for dessert

Wish me luck!

The week of May 11th, 2020 in Pictures

Living in fear

Wasn't there once a high school class called "Health and Safety?" I seem to recall making kissing jokes while people tried to perform CPR on a dummy. But that was a very long time ago.

Today with the Coronavirus all over the news health and safety are at the forefront of my mind. Not "stockpiling toilet paper" on my mind, but enough on my mind that I'm taking extra precautions. Given my heath issues I don't think it would surprise anyone if I just self quarantined till this was all over. But I'm not. Here's why.

Shopping at Costco with my cotton gloves on yesterday.

Five years ago I contracted TB. It's also an airborn virus that frequently kills people. Fortunately for me there was treatment for it, although nine months long and damaging. After I recovered and was about to return to work I developed a serious phobia. My phobia was about people coughing and being in close contact with others. Strangers were the worst. If I had to shake someone's hand I was left almost in a panic. I had developed a real germ phobia that was interfering with my life. 

What got me out of it was this. I realized that the fear of getting sick again was ruining my everyday life. My quality of life was going down because of fear. So I rationalized with myself. Told myself I can take reasonable precautions (not hug someone whose sick, buy an air purifier for my office), but that anything outside of hand washing and common sense was just me letting the fear into my life. I refused to do that so I decided not to. And that was it. Literally from that day on the panic stopped. 

Fear was telling me that I was going to get sick again. Something in reality I have very little control over. Zoom ahead five years and I still refuse to let fear dictate my life to me. No one knows how long they have. I could be in a car accident, get run over in my wheelchair, get food poisoning, have a stroke. I have no idea how or when, but I do know that I'm going to make the most of it and not live in fear.

I will wash my hands for 20 seconds, I will brush my teeth twice a day, go to my doctors appointments, use hand sanitizer and not be stupid. But I will not stock pile toilet paper, buy every Clorox wipe there is, or cancel plans I've looked forward to because of fear. Fear will not dictate my life or how I live it. That's a choice that I made years ago and I never looked back.

Plan Kick Ass - Day to Day

"What's going on with Plan Kick Ass?" I'm glad you asked! It has been a little over a month since I did an update. Here's how things stand. 

Food is good.

I don't always have the spoons to make stuff from scratch.

Tomorrow is another day.

Here's the areas I'm doing well at. Eating fresh and local I think I have down. I'm also eating much more veg than I was! I make a smoothie when I can (like I need to make one today). I'm stretching at least once a day, typically a few times. I have "naps" down solid and I really reduced my work week. Ha ha.  

Bruce is a napping PRO!

I've been asking for help when I need it, but my husband and mother usually want to do things for me before I ask. That makes me stubborn and actually LESS likely to ask for help. I need to talk to the two of them about that. 

I live in a food oasis where we have tons of fresh, local, delicious food constantly available. And let's face it. Food and eating it makes me happy and I need a lot of "happy makers" right now.

Our beautiful Farmer's Market on Saturdays

Roasted fall veg (that my husband wouldn't touch)

Here's where I'd still like to improve.

• Eat smaller portions.
• Eat more seafood
• Eat less sugar (No, it doesn't help. That was a fluke day)
• Eat less dairy
• Back to no soda (As soon as I finish my last Ginger Ale)
  

Most things I try (power drinks, sugar, Magnesium, etc...) seem to work great for a little bit, then taper off. So I'm not doing the power drinks regularly because there's just too much crap in them for what little I get back anymore. 

Roasted chicken (that my husband enjoyed)

On the medical side my doctor is sending me to an ENT to rule out any vestibular causes for my dizziness. I'm willing to try anything because not being able to drive BLOWS!

Accomplishments

When I was in school an accomplishment was finishing a major assignment or passing a tough final. When I was working an accomplishment was making a breakthrough with a client or making my bonus. Today an accomplishment is doing a load of laundry or watering my plants. 

Accomplishments are necessary goals that keep me feeling good about myself, my skills and my life. Even though those goals have changed drastically over the last month, they're still important for me.

Here's a few examples of what I consider to be accomplishments this week:

1. I turned in my application for my town's disabled community transit and got my card. This gives me more options to get out now that I'm driving much less.
2. I asked my doctor to sign off on some important paperwork for me... and he did! 
3. I got my first SSI disability payment. That was an intense process and I felt proud that I accomplished it. 
4. I made it to the mall with my mom (she drove).
5. I made dinner last night. It was hard, but I did it!
6. I walked my dog twice this week with my chair.
7. I talked to my doctor about my new symptoms in person.
8. I made an appointment with a new neurologist and scheduled my next brain MRI.
9. I shaved my legs.
10. I went to the bank (like INSIDE!) and stood while I waited.

Body Scare

So I got to have my first ambulance ride two nights ago. That's a check off the "bucket list of chronic illness" that I was hoping to avoid. 

Call the wambulance!

To sum up what happened was that my muscles didn't want to breathe (or forgot how?), I was incredibly dizzy, had a horrible headache right in the front of my forehead and my muscles (especially my hands) got even weaker. 

I woke up my husband around 1:30AM and tried to calmly let him know what was going on in my body this time and ask him to call an ambulance. 

Although it was my first ride in an ambulance, THIS is a familiar sight!

They ran a lot of tests, gave me some Tramadol and Benadryl through my IV and called it a night. They said I have myopathy (GASP!) and a migrane (strange) and dizzyness for an unknown reason. The meds did help though and I politely declined their offer to admit me and put me on a ventilator. I'm good for now thanks. 

The full IV also seemed to help.

It wasn't until this morning that I remembered the Manuka honey that I tried the day I had the "flair." I came home from work and told my husband that my armpits hurt (I'm sure it was my lymph nodes) and I didn't feel good. Then that night... ambulance. I later read that some people can be allergic and have a reaction to it. Duh! I think that's what happened.

It's also a good reminder for me to watch out for unpasteurized things. My immune system is very sensitive and I think I should stay away from certain things. No wonder the Benadryl the hospital gave me helped! No more Manuka honey for me, just to be on the safe side. 

So now I just say "no" to: Raw fish, Manuka honey, anything unpasteurized, gluten, processed foods, fast food or too much white sugar. 

Not a very big list, but I still struggle with the sugar and processed foods. And despite being an evil company I still miss Taco Bell BIG TIME! But as my husband reminds me "Taco Bell is not plan kick ass."

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.

Day 13 - Staples Out!

I had my first post-op appointment on Wednesday and it went super well. I feel I completely lucked out with the level of care I was given by my neurosurgeon Dr. Shahlaie. As fast as this all happened he was completely reassuring, empathetic and enormously talented. The whole procedure was minimally invasive (what he specializes in) and I feel like I won the brain tumor jackpot (if that makes any sense.)

Me & Dr. Shahlaie at my appointment.

I told him I'd remind everyone that I shaved my own head so he wouldn't get blamed.

I learned the there's a very small chance the tumor will return, but he got the whole thing and everything is healing really well. I also got some super cool pictures of my scans and was able to compare pre-surgery MRI to post-surgery CAT scan (the night after surgery.)

But first! Here I am with no more staples! YAY! I can report that it didn't really hurt coming out either. More like a little pinch. Thank Goodness! I was a bit scared about it.

14 staples gone!

Now here's the MRI of my tumor on the left and the CAT scan without it on the right just after surgery. It's amazing how fast my brain tissue was taking the space back up that the tumor was filling. The black lines on the CAT scan are silicone mesh that they inserted between my tissue and skull. That will stay.

The blue circle here shows the part of the skull that was removed to access the tumor.
You can also see the staples to the right side of it (that are now gone.) 

And here we have what I consider to be the most interesting picture. It's a CAT scan post surgery showing my 3 plates and 10 screws. To make it easier to see I color coded it.

• Blue is the piece of skull that was removed and put back. 
• Red is the 3 plates. 2 are straight bars and 1 is a round one. All are titanium
• Yellow is the 10 titanium screws keeping everything in place.  

You can see the staples here too, but that's just in the skin.

All the other hardware will be with me for life now.

My husband calls it "jewelry for my head." Hahah!

Here's what the round titanium piece looks like not in my head. I think it's really interesting looking!

Here's the scan without my markups. It's a bit harder to understand, but easier to see all the details.

I got cleared for lifting 20lbs and doing moderate exercise (as long as my muscles cooperate of course.) I'm trying to be more active and get some exercise. My father-in-law gave me the fantastic gift of clearing out my garden for me, so I'm now trying to beautify it and give it even more love. So far it's hard for me not to do too much, but I'm trying!

My amazing father-in-law going to town on my mess of a garden.

What a great gift!