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

How I've Changed

Humans are bags of squishy bacteria and water. We're sensitive and vulnerable. It's amazing we live as long as we do given our ability to succumb to the slightest virus, infection or change to our bodies. And we do change. All the time.

My body has been through a lot in its 47 years. Car accidents, a pregnancy, multiple surgeries, TB, brain surgery and a genetic mutation. Without modern medicine I would have died a hundred times over by now. But not only am I still here, my serious health issues have changed me... for the better.

I believe I am a much better person now than I was before I had Latent Tuberculosis or my brain tumor. I am far more patient. I let little things go very quickly. I have a lot more perspective and love for others. I'm way less shy and more outspoken. I am fast to let people know I love them (animals too). I smile a lot more. 

But why?
How?

Because I know now what's most important. It's not being first in line or looking young and beautiful. What's most important to me now is that the people I love KNOW 100% that I love them. That I leave strangers feeling happier and in a better mood than before they interacted with me. That I make the world a little bit better just by being alive. By being here and a part of it. That's what matters most to me. Not superficial, shallow stuff.

Each day I'm grateful to still be here. I'm appreciative that I have my beautiful wheelchair and medicine to help me feel better. Doctors who try and help me live my best life and a family I'm devoted to.

I hope I'm here for years to come because I love my life.

Guarding my spoons

I love "spoon theory". As a visual person I can relate to energy being represented by spoons. Lately I've been learning how to guard my spoons better.

For example, if I have to take something to the back of my house (even though it's not that far) I'm learning to leave it on the table until I have more than one thing to go back. A big one that has been helping me lately is when I have to get up and down out of a chair.

If I need to do something that will require me to get up physically, more and more I will ask someone else in my home to do it for me (if they're around), or again wait until I have multiple things I need to do (like I have to pee AND I'll switch the laundry AND get myself more water). This does not come naturally to me. At all.

Did I mention this doesn't come naturally to me? I'm a multitasker for sure, but listening to my body and adjusting what I'm doing based on my what my body needs is incredibly hard. And I'm guessing that's not just for me, but for a lot of people.

I've noticed that now my spoons are now more dedicated to smaller things. 

One year ago 1 spoon would go to taking a shower and getting ready for the day. Now it's more like 1 for showering, 1 for putting on a bra, 1 for putting on makeup, 1 for the rest of my clothes, 1 for fixing my hair... which makes me much more selective about what I choose to do (not go around naked) and not do (wrangle on a bra every time). 

For me this is a huge part of learning day by day how to live with my chronic illness. Paying attention to what I can do that day, that moment and what's worth my spoons. 

Ways to stay calm

I have a dentist appointment today. It's my first one in a few years. Ok, more like five years. I'm a serious dentaphobe. As I was tooling up to stay calm before my dentophobia took over, I thought I'd share what helps for me in these situations.

Everyone has something they're afraid of and with a chronic illness you're likely to have to face those fears over and over again. I know I sure have! So here's some tricks that help keep me calm.

1. Timeline. I try and keep it all in perspective. It's a blip in my day (week, month, year) and will be over pretty fast.
2. Bring something to hold. A small rock, shell, Beanie Baby, whatever. It helps me if it's something heavy to help keep me grounded and relaxed.
3. Check your muscles. When I'm stressed I tense up a lot. Checking in with my body, especially if I start to feel pain and intentionally relaxing into it is really helpful for me.
4. Pick a smell. For me nothing makes me happier than the smell of my husband's deodorant. I equate that smell with him. Mix it with Irish Spring and Head and Shoulders and I'm over the moon. But for something like a dentist appointment stealing his deodorant and wearing it for the day is enough. It's like he's there with me and that helps me relax.
5. Be comfy. Many times I would have no control over a situation, but I can control what I wear. I skip the bra and wear clothes that make me feel happy and relaxed.
6. Treat yo self. I can't tell you how many times the thought of a chocolate shake or a caramel apple cider pulled me through stressful medical procedures.
7. Bring a soft blankie. Another trick I've done that was super helpful. Hospital blankets suck, so having my own has been helpful many times.
8. Have someone you love take you. My mom is taking me today, though she won't be back with me. But she would if I asked. That's love. To sit in the dentist office for someone!
9. Visualize. Everyone should have a calm, happy place they can easily go to in their mind. I have at least ten. Use it and transport yourself.
10. Breathe (if you can). It's not always possible to take a deep breath through things (spinal tap, MRI, dental crap), but if you can try and notice your breathing and keep it calm and slow.

Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

The A Team

It's all coming together now. The "A Team" is assembled and ready to fight my Metabolic Myopathy. 

I'm so happy I could burst!

Yesterday I had my much anticipated appointment with a place called PMR (Department of Physical Medicine and Rehabilitation). There I met a fantastic doctor who not only had heard of my condition, but has other patients with the same thing across a spectrum of disability. 

She heard me when I talked, had read my chart ahead of time and had fresh insight into my care. It was so wonderful I almost cried. She reviewed my tests and records with me and took a baseline of my lung functioning. Something no other doctor had done before. She ordered some new labs for me and gave me recommendations for things to try.

At this clinic I will be assessed and followed for future mobility tools that will work the best for my needs and body. I'll also be connected with the MDA (Muscular Dystrophy Association) for additional resources. During my appointment she shared that there are 600 discovered muscle diseases related to MD as of right now, but more are being discovered all the time. FINALLY! FINALLY someone agreeing with the research I had been doing for years on my own and offering me real help. 

So now I have a great neurologist, this new knowledgable neuromuscular doctor, my fabulous PCP (Primary Care Physician) and my patient advocate who helps coordinate my care. My husband and I call them all "The A Team" (because 1-It's funny and 2-My name starts with an A).

Knowing that I have medical professionals who understand my illness, are looking for ways to help me live my best life and who listen to me is such a relief. It took about two years to get to this point and a TON of work on my part so I'm savoring this feeling of being helped and supported like never before by my A Team.

Neurologist to the Rescue!

Making funny faces while I still can.
Till I gave myself a headache.

Today was my three month check in with my new neurologist. This time I came armed with the three topics I wanted to cover.

1. Dizziness
2. Headaches
3. Massive Exhaustion Daily 12-3PM

After doing research I'd come around and agreed that the migraine symptoms I was experiencing for the last seven months or so were likely being caused by neuromas from my brain surgery. Nerves that get trapped in scar tissue and cause pain. Both the ENT and my neurologist said "Yes, they are migraines. That's why you're dizzy". Got it. Now we're all on the same page. NOT caused my my Metabolic Myopathy at all. 

The appointment went well and we have a new plan of attack. We're going to try Botox to see if we can get the muscles to relax and the nerves to stop sending pain signals. My neurologist said that's important to do as fast as we can because otherwise the body "learns the pain and it won't stop". (((GULP!)))

So onto insurance who must approve this treatment (because this is America and insurance companies know better than doctors here), then onto another neurologist who does the injections. Then I have to wait to see if it worked or not. I was told it might not work the first few times and each time I have to wait three months. Soooo... (breaking out the calculator) IF my insurance company approves it ASAP it could still be at least another month before I even get to try it and up to six months for it to work at all. IF it does work. 

My version of "fast" and medical "fast" are two VERY VERY different things. I really must keep that in mind. 

As far as non medical interventions, he approved the use of my home Tens Machine on my head (despite my husband's fear that I would fry my brain with the titanium plates in my head a la' Frankenstein's Monster). I also have this beautiful new cold pack cap to try out (I think I saw it on Project Runway?) And something called Sea Bands.

The Sea Bands are a recent addition to my arsenal and have been shockingly helpful with my dizziness. I read a review by a woman with migraine induced vertigo who swore by them, remembered we owned a pair, tried them out and WOW! Well... half a day later... WOW! They are really helping me.

As far as the exhaustion that happens daily, the neurologist said that it could be explained by something called a "Migraine let down effect". The symptoms he described were very much what I go through every day around 12-3PM. Exhaustion, blurred vision, mental fog, weakened muscles. He even used the analogy I use "It feels like you ran a marathon". He suspects that taking care of the migraine might also (hopefully) eliminate this daily ritual as well. 

I'm feeling good with where my neurologist and I left off. I really like him a lot. I think he's my sixth? I'm glad I didn't give up and my PCP encouraged me to go back to the neurology clinic. 

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

Going All Natural

So my hair (and body hair) isn't the only thing that's going natural lately. I took stock of my beauty items and household items and want to make some changes there as well. Given my health challenges I think it might be helpful to try and go "as natural" as possible. 

(But not filterless. At least not ALL the time.)

For me that means avoiding things like added chemicals, scents and ingredients that I don't need and that could cause me to react in some way. It's insane the crap that is added into products, especially products for women. You can read more about it in this great article in The Guardian titled Pretty hurts: are chemicals in beauty products making us ill? 

I'll call this group "Level 1".  It's things I use that go directly on my body. Makeup, lotion, soap. Keeping away from dyes and sulfates. Your skin is your largest organ and what you put on it is very important. 

Level 1 - Skin, Body Care

• toothpaste (my favorite)
• shampoo (the one I just bought to try) 
• lotion (I like to use organic coconut oil)
• face toner (Witch Hazel works fantastic and is super cheap)
• soap
• makeup (I rarely wear it, but Gabriel and Zuzu are my top brands)
• deodorant (my favorite from Etsy)

I've tried to make my own natural skin care items through the years and I've learned it's much cheaper for me to buy from people who know what they're doing. My husband can attest to this. My "home made shampoo" fiasco of 2014 ended in $100 worth of shampoo. It was a mess.

I like to buy on Etsy when I find a good "maker" who doesn't use chemicals like the store brands. Reading labels is soooo important. As is not "drinking the girl koolaide". I swear that I go through this purge like twice a year. My husband must be so sick of it by now. I'm sure he thinks "Oh yeah! It's the annual 'Go Natural' time!" I'll start off great then something will catch my eye or FOMO will kick in and I'll slip down that glitter Maybelline slide. Well not this time because it's not worth risking my health.

This time I want to take it up a notch to...

Level 2 - House, Home Environment

• Glass Tupperware not plastic (been doing this for years)
• Silicone baggies instead of plastic
• Natural laundry pods (this is what I'd like to try) 
• No dryer sheets
• Natural dish pods
• Using vinegar, tea tree oil, castor soap, baking soda to clean instead of chemicals
• Make my own wet mop pads

I'm also not replacing anything till what we have is run out (I can hear my husband breathe a sigh of relief). And a few things I'm keeping in place till our son doesn't live with us anymore. Like the Clorox toilet cleaner.

But wait! There's more!

Level 3 - Healthcare & Diet

• Sticking to a diet of fish, eggs, good oils and avocados as main sources of protein.
• Cutting out processed, refined foods.
• Researching my condition more (Metabolic Myopathy)
• Being open to alternative options (what I eat, fitness, conditioning, supplements. Supplements have made a huge difference in my condition.)
• Getting back in the water, even if it's just to float around. 

By opting out of the chemical filled culture not only am I helping myself, my family and my puppy. But I'm also supporting an industry whose values more mirror my own. Fair trade, recycling, small business, women owned companies, social justice, all are very important to me. Every dollar is a vote for the kind of world you want to live in. And because some of these things cost more I like to think I may even consume less.

And as far as my heath goes I am slowly learning that I am the professional, everyone else works for me to help me feel and be my best. That goes for me as a consumer as well as me the "patient". And it goes for you too!

(I received no incentives and I'm in no way affiliated with any of the links on this blog.)