Showing posts with label metabolic myopathy. Show all posts
Showing posts with label metabolic myopathy. Show all posts

Wednesday, November 8, 2023

Five Years Later...

Sometimes I like to go back in my blog and see what was happening five years ago that month. In November 2018 I purchased my first wheelchair and received my first accurate diagnosis of Metabolic Myopathy. It feels more like ten or 20 years ago. 

The world was without Covid. I was still working full time. My mother was still living in England (not right around the corner.) Life was incredibly different.

Right now I have the luxury of time. I'm able to spend the bulk of my time rebuilding my body. I often feel like the bionic woman. Remember her?

I'm being re-built one trip to the gym at a time.

Five years ago my body was changing in ways that terrified me. Now I'm changing in ways that are thrilling. I see my muscles getting stronger. Change I can actually see! Daily! Change that I'm causing by my actions, not that I'm a victim of. It feels amazing.










Thursday, October 15, 2020

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 





When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 





Monday, September 14, 2020

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. 


Saturday, August 1, 2020

Try ALL the Things!

It's a new month. August. The bridge between summer and fall. A perfect time to try something new. I've been told (and my own research confirms) that I am not eating properly for my muscle disease. What I should be doing is eating many small meals through the day that are high in protein and "good" fats and low in carbs. But what I like to do is eat two large meals (especially dinner! My favorite) and nothing in between. Breakfast to me is a banana or just coffee. Not so good. 

Soooo... Since I want to be my best healthy self that I can be. And I'm also very fortunate to have access to food. I want to at least try eating the way that my doctors recommend. With gratitude in my heart that I have the financial stability to be able to do so. Especially now during the pandemic.


Soooo... I did a lot of research and here's what I found:
  1. I should try eating 6 smaller meals a day. 
  2. I will prioritize foods naturally high in COQ6 since that's where my major genetic mutation is.
  3. I will focus on foods that are high in protein and fats and low in carbs.
  4. I am going to pay close attention to my symptoms and how I feel.
  5. I am going to try this for the entire month of August.
Yes. I already started!

I read that foods naturally high in COQ10 are:
  • Trout
  • Herring
  • Mackerel
  • Sardines
  • Spinach
  • Cauliflower
  • Broccoli
  • Oranges
  • Strawberries
  • Sesame Seeds
  • Pistachios
  • Eggs
  • Soy
  • Peanuts
(I got this instead of Taco Bell the other night. One small choice at a time!)

Some basic "good fats" are:
  • Avocado
  • Salmon
  • Peanuts
  • Olive Oil
  • Eggs
  • Dark Chocolate (85%)
  • Macadamia Nuts
  • Tofu
Foods high in protein are:
  • Anchovies
  • Eggs
  • Yogurt
  • Tuna
  • Salmon
  • Pumpkin Seeds
  • Cottage Cheese
  • Peanuts
  • Tofu
  • Beans
  • Halibut
  • Peas
  • Oats
  • Hummus
  • Broccoli
  • Popcorn
  • Avocado
  • Asparagus
  • Potatoes
  • Shrimp
  • Guava
  • Sun Dried Tomatoes

Food helpful for inflammation are:
  • Flax Seed
  • Green Tea
  • Turmeric
  • Walnuts
  • Pineapple
  • Kale
  • Garlic 
  • Broccoli
  • Lemon
  • Berries
  • Avocado
  • Cantaloupe
These lists aren't all inclusive, but are helpful for me. I also notice a common theme. Like rich fish, eggs and tofu. Those will be a staple for me. 


My hope is that maybe I'll have more energy with eating this way and even a little less pain. That would be lovely. It could also make some weight loss easier too. Fingers crossed. I'll keep you posted!

Wednesday, July 15, 2020

Botox Injections for Migraines - Take 2!


I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.



With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.
No shame in listening to your body!
Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).

Tuesday, June 23, 2020

Mermaid Time is Here!

FINALLY!!! IT HAPPENED!!! I'm the luckiest mermaid ever.
The swimming pool at my Mama's senior community opened up. The water is perfection. She and I couldn't wait to get to use the pool in her beautiful neighborhood. Covid delayed our anticipated dip, but it also made us all the more eager to be the first ones in.

I adore swimming. I always have. I feel most at home in any body of water. That's why when my muscle disease came into my life two years ago I told people "I'm just turning into a mermaid!" I always knew I was one.
Water is also the very best way for me to get exercise. It's supportive and safe on my muscles. Like all things though I have to be very cautious not to do too much. Which is exactly what happened on the first day we swam. I learned however and adjusted. Now I have two pool noodles. I stick one under each arm and try to just move my hands, torso and legs. Not so much my arms.

The hardest part of swimming is getting out. Not that I don't want to get out (but that too), it's because my body then feels to weigh about 1,000 pounds. It's a serious strain and very challenging, but I just go slow. Even if the pool had a wheelchair lift I don't think I'd use it (*yet). It's a good workout just getting in and out.
In fact... putting my suit on, getting to the pool, unhooking my wheelchair, getting in, swimming, getting out, drying off, getting my suit off, taking a shower, getting dressed again is about 99% of my spoons for the day. It's a serious workout for my body. But it's also one I'll enjoy doing for as long as I can.

Wednesday, June 17, 2020

The Curse is Lifted!

I have my days back

I'm thrilled to share that I FINALLY found something that keeps me awake all day long without any side effects. It's THIS! Orgain Organic Nutritional Shake.

This is the first one I bought and tried.
I have no idea why it works for me. 

My guess is that my body just doesn't absorb nutrients correctly to get them to my mitochondria. So I would be totally depleted of energy by the afternoon. But when I consume a lot of them in liquid form my body can somehow use it more efficiently than by eating. 

I'm so grateful that I found this product and that it works. Now I'll be looking around to see if I can find other things that work just as well but for less. Each drink costs me between $1.90 and $2.50 depending on the flavor. I use it as a meal replacement, so it's not as bad as it sounds. But since I'm unemployed right now I want to try and save us as much as I can. I'm also curious if something like a vitamin water would work just as well or if it has to be with protein too.

At first it felt really strange to have a full day back. Like I flew to another country where their days are twice as long. Now after about two weeks of it I'm getting more adjusted. It's wonderful! I still have to be careful not to do too many things at once. 

If I spread my activity out with resting a lot in between I feel much better. If I push myself I'll end up with shaking muscles and sweaty. Then it will take about an hour for that to stop. Ugh.

I have a check in with my muscular neurologist this week where I'll let her know about it. I want to discuss my increasing pain and muscle spasms with her. 

I haven't used the CBD/THC pen at all since I discovered the drink worked even better with no side effects. One pen cartridge is the same price as 12 drinks, but it's much better for my lungs. I also never drive with the pen and I can drive a little in town normally. That's a big thing to have to give up to stay awake if I used the pen instead.

I can't tell you what a relief it is to have a big chunk of my life back. I'm so grateful that I stumbled on this product. Fingers crossed that it keeps working!


I have zero affiliation with any product I ever talk about on my blog and received no incentive to write about it. 


Tuesday, June 2, 2020

Desperate for help

I've been messaging with my doctors for the last month about my increasing pain. I've shared my struggles with neuropathy in my arms and legs, especially at night. I've voiced how I feel like I'm being pulled apart on a torture rack. I've stated that my pain makes it very hard for me to complete simple tasks and leaves me chronically exhausted. And then there's the afternoon crash. Missing out on three hours of my day regularly.
The Epicacten did help with this crash, but it left me feeling like a jet lagged tourist who downed a bunch of espresso to try and stay awake. Foggy headed and still exhausted, but unable to sleep. Not really much of an improvement. 
My primary doctor increased my night time Lyrica dose and that did help the neuropathy a bit. My muscular neurologist increased my Baclofen from three times a day to four to try and help the muscle cramps and spasms that were also increasing, but it did not help. That's how medicine goes! Sometimes things work great, but often they do not.
Then I did what I do best. I started researching some more on my own about Mitochondrial Myopathy and mito diseases. And there it was. The exhaustion, the pain, the neuropathy, everything I experience. What I also found was successful interventions using marijuana to combat the fatigue. 
In the past I've tried high CBD with little to no THC and it never did that much. It could help with night pain a bit, but never enough to warrant the cost. It's not like my insurance covers our (legal in my state) dispensary! Too bad. 

Due to my previous lung conditions and my asthma I've never tried any kind of inhalation, only edibles. But the more I read the more I learned about vaping and how it is better than edibles for pain and energy in many ways. It's instant, you can control the dose better, it's more cost affective and best of all the drug doesn't go through your liver and kidneys, but straight into your blood stream from your lungs.

I researched the best strains for energy and pain. Then armed with this knowledge we went to the dispensary. The employee was very helpful and set me up with a vape pen, cartridge and night time pain gummies to try. She also helpfully explained that if you're trying to help pain you need THC. "Without a little high you can't get rid of pain effectively". 
I'm going slow with it and learning what works best for me, but on the very first day of using it I didn't need a nap. Last night I didn't have the gummy and for the first time since I started taking it I had painsomnia. I'm now going on day FIVE with no mid-afternoon crash. It feels amazing. My pain is also much more manageable. It isn't helping my mobility or muscle issues, but the pain and fatigue are very much improved, so I'll take it!

A doctor of mine did get back to me with another medical suggestion. The medication would involve a hospital stay and the side effects were very risky. For now I'm good with trying what I have. If it becomes a permanent part of my coping tools, then I'll inform my doctors about it. But for now I'm still in the trial phase.



This is by far the best recommendation list for dealing with exhaustion. Shared from the Mito Action Group. 


General Guidelines for Dealing With Fatigue:

Rearrange Your Environment
  • Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them.
  • Replace existing heavy items with lighter one (plastic vs. glass).
  • Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions.
  • Install long handles on faucets or doorknobs.
  • Consider moving your bed to the first floor to eliminate stair climbing.
  • Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment.
Eliminate any Unnecessary Effort
  • Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone.
  • When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on.
  • Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself.
  • Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone.
  • Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy.
  • Soak your dishes before washing, let them air dry or consider using paper products.
  • Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit.
  • Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair!
Plan Ahead
  • Pre-plan your activities and try to make a daily or weekly schedule.
  • Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy!
  • Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them.
  • Cook in larger quantities and refrigerate or freeze extra portions.
  • Work rest breaks into activities as often as possible. Take a break before you get tired.
  • Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function.
Prioritize
  • Eliminate or reduce tasks that aren’t that important you.
  • Remember to delegate tasks to family or friends who offer to help.
  • Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload.
  • Decide  what are the most important things in your life and spend your energy money on them.
  • Always listen to your body, know your limits and don’t let yourself become overtired.
If you do overdo it, try not to be too hard on yourself. Walking the mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amount of mito crashes as possible.




Thursday, March 26, 2020

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.


As far as medications go, here's what I'm currently taking:

Prescriptions Taking
LevoTHYROxine 125 mcg AM
(Pregabalin) Lyrica 150 mg BID
(Duloxetine) Cymbalta 60 mg PM
(Lioresal) Baclofen 20 mg TID
Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN
Acetaminophen 500mg +2 PRN
(Rizatriptan) Maxalt-MLT 10mg PRN
Albuterol Nebulizer (DME) PRN (not used yet)
5:1 (CBD:THC) Tincture or Edible PRN

Supplements
COQ10 300mg 5x a day (1,500mg total)
L-Arginine 500mg AM
Vit. D3 2,000IU AM
Wild Alaskan Fish Oil 1,400mg BID AM/PM
Biotin 1,000mcg AM
Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM
B-2 400mg
Magnesium (citrate and oxide) 360mg
Feverfew (whole leaf & extract) 100mg
I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!
Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 
I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:
  • Stretch twice daily
  • Take Epsom Salt baths
  • Try the epichatechin
  • Explore CBD more
  • Go back to smoothies every morning



Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.


So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!




Wednesday, March 4, 2020

Starting Idebenone


My mid-day exhaustion is a serious problem. Not being able to do anything "all day" has more of an impact than you would think it would. I miss out on a lot of life by sleeping from 3PM to 6PM every day.

I talked to my new muscular neurologist about this and asked if there was some kind of "ATP Booster" that could potentially help lift my afternoon curse. (If you don't know what an ATP is, check out this short, link to Mitochondrial Disease. It's really fantastic). She suggested I try a supplement called Idebenone. Actually, she was the second person to tell me about it. The first was a brilliant man in my MD support group.

Today's my first day on it, replacing the COQ10 that I take every day... all day every day. I'll take 500mg once a day for two weeks, then two of those a day for a month to see how it goes. My hope is that I'm able to sustain my energy and make it through an entire day without a nap.
"...idebenone is thought to increase the energy production inside cells as well as protect the mitochondria (and the cell) from damage."
Now you might think "well, what's wrong with taking a nap every day? Who wouldn't love that?" I'm guessing that's what you might be thinking because once upon a time I would have thought that too. I love naps actually. But that's not what happens to me. 

What happens is my body slowly shuts down and I "crash" more than nap. My muscles get weaker, it takes more effort to talk, my short term (working) memory gets worse and it becomes difficult to focus my eyes. Once my head hits the pillow I'm out like someone chloroformed me in an Agatha Christie book. Out-out. See the difference? Not fun at all and totally mandatory for my body.

This has been happening since late October (about four months) and I'm frankly concerned about it getting worse. A one hour nap increased to two then to two and a half and now three hours is pretty common. What if one day I just can't leave the bed? These are the thoughts that scare me.

On the plus side Idebenone has had some positive results in research, so I'm hopeful. I typically respond well to new things at first, but then adjust over time and they stop working as well. But I'm strong, brave and hopeful.


Friday, February 28, 2020

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)
Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)
This was the petite nozzle that went up my nose. 
Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 


See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:
  • Referral for EMST (fancy for lung stuff) through a speech therapist
  • Occupational therapy for my tweaked shoulder
  • Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
  • March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
  • March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
  • March 22nd I check back in with my primary care doctor about everything
  • Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
  • My teeth are clean, but I need a few procedures, so that continues in April


But what about FUN!? What's going on that's NOT related to medicine or illness?
  • I'm enjoying the new show Lego Master with my honey
  • My mom and I have a blast at our weekly Trader Joe's run
  • I try and take Sweetie out every day, even if it's just around the block
  • Daily I sit on my shower stool and pretend to be a mermaid while in the shower
  • My husband and I are going to a Capitola beach house with friends in early April for the weekend
  • My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
  • I just planted a little herb garden by my door
  • The nature here is already springtime beautiful! I try and get out in it as often as possible
  • I painted my toes rainbow and they make me incredibly happy



Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The i...