We've Got This

"In sickness and in health..."
My husband and I didn't include any traditional wedding vows in our ceremony 31 years ago. Luckily we both love each other enough to stick it out no matter what comes our way. Myopathy, brain tumor, TB, Diabetes, Liver Disease, Diverticulitis, COVID, a Regime in the US. I could keep going but you get the picture. 

 

My guy eats peanut butter as much as these squirrels love peanuts.

My man has been having some health scares lately. He's been pretty borderline diabetic for the last eight years. But this past year it was severe enough that he had to start medication for it and seriously avoid alcohol and carbs. He wasn't a big drinker before anyway, so we thought it wasn't too serious.

Then recently his liver enzyme blood work came back very high. He had an ultrasound that led to a diagnosis of fatty liver. We were both confused. He hadn't been drinking, he cut out almost all carbs and only ate white meat. What's going on? His doctor then ordered a different kind of scan and lab repeat. The scan showed that he has "severe fibrosis" in his liver. Which is one step down from cirrhosis.  

Everyone's body is different. He's also under a lot of stress and pressure with his work. And who isn't stressed out right now in America? I'm thinking that like me, he just had a strong reaction to something. Likely a combination of diet and environment. Fortunately also like me he is a "take action" kind of person, not a "wallower."  

Everything we are planning on doing to help his liver and diabetes is also good for me and my body. So it's really a win-win as long as we're serious and stick to the eating plan.

We both found this list helpful. 

He's now cut out all dairy and sugar. Going easy on fruits and heavy on veg. 

To help us out I subscribed us to a new meal delivery system. It delivers fresh made, organic, Vegan meals to our house weekly. Since I have a problem with portion control and getting enough protein in my diet I'm hoping this will be helpful.

So far I've tried out:

• Hungry Root- It had too much prep required and too much packaging.
• Misfit Market- Expensive, but I liked it. Especially their jalapeno hummus. 
• Thistle- My first delivery is Wednesday. It's also expensive, but all the shopping, meal planning and assembly is done for me. That will be helpful as my energy levels aren't great at night.

I'm also re-joining the gym this week so my energy at night will likely be even worse for a little bit. Having ready made healthy meals that fit both our needs will be a real luxury.  

Me living my best life in 2024

My mom and I are committed to going to the gym three days a week together. I'll start in the pool and slowly (hopefully) work my way up to Yoga class again. I got a lot out of both when we were regularly going.

Meanwhile my husband has been walking a lot more. He loves this mid 70's spring weather ((gag)) and the sunshine is good for his mental health. I'm less of a sunshine warm weather lover, so the indoor pool will be perfect for me.

My weight is currently at a good place and even though I'm just recovering from bronchitis and pink eye, I'm feeling pretty good. I'm hoping we can reverse my husband's liver condition. No way can he go before me!
 

(NOTE: I got nothing for linking to those food delivery companies. All my own opinion. No kickbacks.) 

Making an Effort

I'm realizing there's a very good reason why most disabled and chronically ill people complain of loneliness. It's because friends don't like to be the one to make plans. I'm not sure how that works if EVERYONE is like that. Actually I am sure. It doesn't. Friends fall by the wayside until they vanish completely.

My husband is my best friend.

Of course there are the rare exceptions, but those tend to be family members. It's the very rare friend who will be the one to make the effort to keep in touch and suggest plans.

My mom is my best friend

I have also come to terms with being that person with my friends. If I want to see them EVER than I have to be the one to text, call, suggest SPECIFIC plans... (that's the key, they have to be specific.) And there are a lot of people in my life whose company I enjoy enough to make that effort. And those who I don't.

The person I call my best friend is one of those people who would make an effort even if I was ill and couldn't do it myself. That's one of the reasons I say she's my "best friend." She's reliable, funny, fun to be with, smart, a feminist, doesn't hound or smother me, makes plans and asks me to join her. All qualities I admire. 

My best friend and my mom helped throw me the best birthday party ever.

She's also anxious as hell. Complicated. A contradiction. Traumatized and stubborn. Not all bad qualities. I think of it like a dessert. If it was too sweet I couldn't have much of it. People need balance. 

I also admire how important her heritage is to her. She's half Samoan and half Italian. Funnily enough her Samoan half seems more important to her. But I get it. I value my Italian heritage even if it is much less than my English or Irish genes.

I find now that I have my sisters in my life and their very large families it leaves less time to spend with my friends. But I will always make time for those who enrich my life.

Symptom Update

Time is going by quickly and I'm beginning to learn a lot about my body. What it can do (more than I thought) and what it can't. Where I can push myself a little bit and where I really can't (like naps are a MUST!)

I've learned that if I'm getting sick in any way, my body just shuts down. I need to talk to my PCP about the whole "muscles don't want to work my lungs" thing and see if there's anything that can help with that. It's a horrible feeling. Fortunately it's usually only there if I'm sick or getting sick. 

I've also learned that working three days a week is way more doable than four. I was seriously pushing myself nowhere good working four. Every day I don't work I nap mid-way through. That also helps me in a massive way. I wake up refreshed with energy levels restored. 

To recap on medical progress (or lack of.) 
My neurologist has retired and I wasn't assigned a new one. That's fine with me as I feel that train has gone as far as it's going to go. Every specialist in my network seems to only work on days that I work and I can't take time off every week now that I'm down to a three day work week. Unless magical mermaids decide to pay off all my student loans for me. That would be great. So no neurologist right now.

Opthomologist said I'm fine and don't need surgery. Didn't want it anyway so we're on the same page. Plus I didn't like her.

Appeal for full genome sequencing letter will go out soon. My husband wrote the perfect letter and I hope it will work. My Metabolic Myopathy Geneticist is holding tight. I'm hoping that will illuminate some mutation that will be helpful to know about.

September 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Break out in a sweat if I "do too much" muscle wise. The bummer is I don't yet know what that "too much" is and it also feels like a moving target.
• Loss of muscle strength and energy through the day
• Pain in feet unrelated to activity
• General body pain (worse now, but could be from going down on the Cymbalta)
• Ptosis of both eyelids, right's a little worse (stabilized)
• Occasional dry mouth (this seems to only happen if I'm getting sick or having an "episode")
• Occasional choking (including that time recently that it was almost serious!)
  
  What's BETTER since June:
• Muscle cramps, spasms and twitches are being controlled with my Baclofen 20mg
• Occasional headaches, constipation and urination delay is all much better. This could also be from the Baclofen? Would make sense given it's a muscle relaxer.
• Feel closer to being able to have an orgasm (Yay! Again, could be from the Baclofen)
  
  
  
  I'm overjoyed that there has been some improvement. Moment to moment my life is still very challenging. "What can I do? Am I sure I can do that? I feel tired but can't rest right now. Push through girl! Pain. Pain. Pain. Stretch. Rest. Eat good foods. I miss Taco Bell. Stop doing things that make you feel worse! You need to rest. Don't forget to play. Time for work."
  
  And the next person who tells me to "Get well soon" might get a throat punch. 

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."

3 Weeks Post-Brain Tumor

It's been 3 weeks today since I had brain surgery to remove my benign Mengionoma. Something strange started happening last night. I started to feel angry. Here's some reasons that were running through my head:

• 9 month aggressive treatment for Latent Tuberculosis 3 years ago that was like a bomb setting off a series of autoimmune issues
• Chronic joint pain and swelling 
• Crippling fatigue
• I had a fricken brain tumor
• Whent through brain surgery
• Now I have 3 plates and 10 screws in my head
• Mystery muscle weakness that no one still seems to know why or what it is
• I now own 2 wheelchairs and a walker at age 45
• I need to use a handicapped parking plate
• What I can and can't do has changed dramatically over the last 8 months
• I have constant pain
• There are tons of things I want to do but just can't
• I'm worried I'm going to lose my job because of all the time off and constant doctors appointments
• I want to be able to travel like I used to
• I'm trying to not let my health issues take over my life
• I'm exhausted from being constantly optimistic
• I'm tired of spending money on all of these problems
• I feel like my body has completely failed me

I'm usually a very positive, optimistic person. I'm a problem solver by nature. When I get down, I don't stay down for long. But today is a "down day." I'm lucky that I'm meeting a friend for coffee later. I'll lean a bit on her let her cheer me.

I think this was all triggered surprisingly by my new wheelchair. I finally got the approval, it has been ordered and will be delivered to me November 1st. Yes, I want and need this chair, but I think it also triggered this cascade of anger in me that took me by surprise.

"Big Blue" - My new electric chair

Still not having a real answer about why my muscles suddenly started to give out back in March is horrible. The best I can figure out is it's some kind of "Inflammatory Myopathy." But that's just my personal guess (but it's more than what my neurologist has come up with.) All I know is I can do about 25% of what I used to physically be able to do and no one seems to know why.

My husband and I were hoping the cause was the brain tumor. When we first found out about it my neurologist even told us that was the cause. But quickly other medical professionals disagreed and said it was unlikely to improve anything muscular. However, before surgery my right hand and right side were much weaker than my left. Now they feel about the same. Who knows how or why? So my husband and I are still holding out hope that things will improve on their own.

Hope. That's so important when you're struggling with a chronic illness. I find when I lose hope it's necessary to connect with others who can hold onto it for me. My husband is fantastic about that and he never seems to lose hope. 

I found this lovely quote I wrote down a year ago from my Nana. She told me this over the phone and it's a wonderful reminder that as long as you are loved, there is always hope and comfort. It's a good reminder that I needed today. It's also ok to remember that I'm allowed to be angry. I've been through a lot! And I know the anger won't last long.

Keeping Distracted

My wonderful employer is taking everyone to Hawaii in January. Saturday I just wanted to get out of the house and do something fun, so the hubby and I decided to go searching for snorkel equipment. We've never been snorkeling before, but are excited to give it a try. We pride ourselves in being adventurous and planning an adventure is a good way to take my mind off... well... my mind. More specifiably, my brain tumor(s) (which I have yet to name.) 

My husband is more interested in the traditional snorkel gear, while I'm more in the "float face down like a bloated corpse" camp. I've read great reviews on these full face snorkels. It was helpful to go to an actual scuba shop and try them on though. They didn't have this "Miss Piggy pink" in my size, but they're ordering me one. (insert squeal of excitement here.)

I also distracted myself by calling a friend I haven't spoken to in a very long time. I have a bad habit of online shopping while I'm on the phone. I don't always buy something, but this time I did. I found a company called "Love Your Melon" who makes these adorable hats (and blankets.) I just loved the idea of wearing this soft, cozy hat after my (potential) brain surgery. And even if I don't need surgery, I still need to love my melon.

50% of proceeds from the company go to help fight childhood cancer.

On Friday before I even knew about the brain tumor(s) I bought myself this mermaid pendant. I've had my eye on it for a month, but had to save up to get it. I thought it was a beautiful way to mark getting my first "real" wheelchair. The medical equipment company is sending a rep to my house on Thursday to measure me and help me pick out an electric chair. This necklace is the first mermaid I've seen who doesn't have long flowing hair, but who also has some sass. Just like me. I love her. 

Now that I've been diagnosed with a brain tumor(s) I'm sure my insurance company won't give it a second thought about covering my electric chair 100%. So that's a bit off my mind (get it? Hahah!) I'm looking forward to meeting the rep and hearing more about my options.

My husband has been amazing (as always) and has also been so helpful at keeping me distracted this weekend. It's been a weekend full of back rubs, hugs and extra loves and support. He didn't even flinch when I insisted I needed a $25 ZZ Plant for my office. What a guy!

We're hoping to learn more today about the tumor(s) and what's to come. But in the meantime I'm focusing on the now and keeping busy. 

NOTE: I'm not affiliated with any of these links and I didn't receive any compensation for sharing their information in any way. 

When Your Legs Don't Work... Become a MERMAID!

Today I'm a mermaid

I've always loved mermaids, but since I started having my major muscle weakness and fatigue I've been even more captivated. I like to think of myself as a transformed mermaid whose human body is failing, but who can still swim just like she used to. That's a more comforting thought than a "chronically ill middle aged woman." I mean who wouldn't rather be a land-locked mermaid? Health is all about your frame of mind and your spirit.

So "Shirley" finally came and my husband and I took her out for a spin. He had the great idea of going to a local art gallery. The floors were flat and smooth and it was a big safe space to try out the transport chair for this first time. He did fantastic! Applause all around. Not one tip or bang. 

The #1 thing I noticed was that this was the first time I can remember in a very long time doing anything outside of the house that didn't leave me completely exhausted and needing a big nap. It was a strange sensation to have been all through the museum, but to NOT be totally out of spoons. So yeah, that was amazing and a huge relief.

Me & Shirley enjoying some underwater art.

You know... Cause I'm a mermaid!

So now in the back of my car I have my Nordic Poles (I don't know why I didn't name them? Maybe because I don't use them much.) Meg my Rollator and Shirley my transport wheelchair. I keep them in my car because I never know which I'll need when I'm out and I like to use the least assistive device that I can to keep my body strong. 

This Friday I'll be seeing my primary care doctor for my first official "wheelchair evaluation." I'm hoping to get an electric chair for when we're off on big adventures or on vacation. It would be better for inclines or off roading than a transport chair and it would also be something I can drive myself. I don't mind relying on my husband for smaller day-adventures, but for a longer vacation I'd need more independence. 

My wonderful doctor has also taken over my Lyrica Rx because I never did hear anything back from Neurology. That's more than a little frustrating. "Unacceptable" is the word my husband used and I have to agree. 

As much as I'm enjoying work that's also proving to be a struggle. Mornings are hard (even though I do my best to make them as easy as possible for myself) and I'm often out of spoons before I even leave the house. It's fatigue that's the hardest. The Cymbalta and Lyrica are doing a good job controlling my joint pain, gelling and neuropathy. Though I also take stretch breaks and do my best to keep as active as possible.

I'm thankful to still only be working 2 days a week because come Wednesday I need to rest most of the day. Too bad I can't just swim around all day looking for pearls like a REAL mermaid does!

Most Important Part

I'd like you to meet the most important part of my life. My husband of 23 years, my partner for 25 years, the father of my son and the person I couldn't do without. 

I think most people imagine their husband/wife/partner to be a very important part of their life (at least I hope so.) But I know that mine is even more unique.

Other than making me laugh all the time (and laughter really is great medicine), he has supported our family financially, comes with me to every medical appointment and procedure that he can, rubs my back every single night and reads me a story out loud every single night. This was once a loving night time gesture and a fun way to spend time together that didn't involve a screen. But over the past 3 years it has become much more than that to me. It's the highlight of my day every day and the main reason I get any sleep at all. What a guy! Of course he does much more than that, but for the sake of space I'll keep it more focused.

Having a companion in life is the key to good health. Isolation does horrible things to both your body and your mind and any burden is much lighter when shared. Even on my worst day I feel my pain and mood lighten when my husband comes home. 

My superhero of a husband also tends to see the good everywhere. The good in people, in intentions, in situations. He is incredibly trusting, kind and generous. I tend to be much more cautious about who I trust and vigilant with people. He brings out the best in me. 

He's a lot like another man I adore, Mr. Rogers. He's calm and patient. Two things I have to work very hard to be in any way. You'd love to have him as a neighbor. 

I have no idea where the future will take us both. But I know that I can tackle anything that comes my way with him next to me. I also know that I can count on him and that anything I share with him will be heard and taken seriously. I think that makes me very lucky!