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 intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

Let's talk about pain

Something I don't talk about is my pain. Not in my journals, here or in person. The last time I talked about pain specifically here was four years ago.

I do talk about it... LOUDLY with my medical team. However, even with them there's this sense of "Yes. You have pain. And? What do you think we can do about that?" Or at least that's what it feels like to me.

A lot of the time it feels futile to even broach the topic of pain. I know I have pain. Tons of it. But it's so subjective and hard to describe that I rarely do. How do I begin to talk about pain? There's the 1-10 scale.

This is the old-school traditional one that's useless.

My pain is usually a 6 all of the time.

Although this pain scale is better, it's still not perfect.

The last time I saw my muscular team I let them know ahead of time that pain was the number one thing I wanted to talk about. Even then I had to bring it back up at the end of my appointment. A quick medication review and she stated "It looks like you're already maxed out on meds. Have you tried acupuncture?" That's every doctor's answer to everything. Physical therapy and acupuncture. 

y'all make me tired!

Instead I asked for a referral to the "pain clinic" I'd heard about vaguely in the past. Like a hushed secret from someone. I had no idea what it meant, but it had the word "pain" in it so I figured it was at least worth a try.

Now here comes my least favorite part of all medicine.

Once at the mythical "pain clinic" I was asked "Where is your worst pain." "Well... my whole body! Let's start there!" On the meticulously filled out paperwork I clearly stated that I have 

• Burning pain
• Pins and needles
• Aches
• Soreness
• Pulling
• Throbbing
• Stabbing

All of these are from different parts of the body and I'm guessing have some different causes such as neuropathy, arthritis or my muscle disease. But I chose my back as the worst. She poked and prodded and yes... "elicited a pain response." That's medical jargon for "hurt me." Then came up with a plan to treat that specific pain.

Insert eye roll here.

I am not a single issue or body part. I am a whole body. A person. So why the medical field insists on treating individual body parts I will never know. It feels incredibly frustrating and antiquated.

I agreed to try a procedure called "dry needling" on my back. I'm hoping it helps with the chronic pain I have there. I guess the rest of my pain will have to watch on in horror. "Let this be a lesson to the rest of you!"

My second "pain clinic" appointment was with a social worker. It was interesting. He recommended some books to me and a support group. Unfortunately the group meets smack in the middle of my rest time. I told him if they start a morning group I'd be interested.

He also wants to meet with me over the computer to go through some CBT techniques for pain. I'm guessing I already know them all, but I will try to keep an open mind. 

I bought the book he recommended:
You Are Not Your Pain

The pain community is big into mindfulness.

I appreciated the reminder that it can be a tool. One that I stopped using a long time ago but am open to giving it another try.

So although I felt heard, it was also frustrating. Other than taking opiates, which I have zero interest in ever doing unless I'm actually dying. It feels like there's few options.

What helps my pain is:

• Distraction (eating, petting my dog...)
• Heat
• Gentle movement (stretching)
• Rest
• Massage (from my husband)
• Salonpas, Ibuprophen
• My Lyrica, Cymbalta, Amantadine & Baclofen

I'm also trying to talk about pain more and let my husband know when I'm in pain. I thought maybe like anxiety and depression, pain likes silence. So I'm working on that. 

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

Bathtub Theory

The energy symptom of my condition can be hard to explain. Most people can understand what "progressive muscle weakness" involves, even though it's invisible. The more I use my muscles, the weaker they get. But energy is more complex to put into words. 

I like strong visuals, they help me to better understand non-visual concepts. There is the very popular "Spoon theory" that some people use to better comprehend the energy struggles of someone with a chronic illness. Though excellent, that theory doesn't quite explain my personal energy struggles correctly. So I came up with my own "Bathtub theory." Here's how it goes.

Overnight when I sleep my "bathtub" (body) is filled with energy (water.) You still with me? Pretty simple. When I wake up, I have a full bathtub. I have good energy and am ready for the day.

Here's where my mitochondrial disease kicks in.

The second I wake up, the drain is pulled and my energy starts to go.

When I do some activities the water pours out faster. For example. If I'm gardening or cleaning my house, it's a gush of water down the drain. I lose a lot of energy doing those things. If I'm a passenger in a car, then it's just normal draining. 

The only thing that stops the drain is sleep. It doesn't fill back up until the next night's rest. When I lay down and take a nap the plug goes back in to stop the water loss but that's it. My muscles may "refresh" but never my energy.

A healthy, able bodied person loses energy too of course. Their tub also starts to drain when they wake up. But here's where we differ. They can easily add more water by eating, having a cup of coffee, sitting down to relax, etc... All of these things will add more water to their tub. Nothing will actually ADD water to mine except for a solid night's sleep.

If I didn't have my medication and supplements I would start each day with maybe a quarter tub fill instead of a full tub. I suffer from chronic pain, but it's not as awful as it would be without my medication. I also sleep more soundly through the night with my drugs to help me. Both of these things take a lot of water if not kept in check.

To recap.

The second I wake up my full tub of energy starts to lose water. The plug is pulled. The water is draining continuously through the day, just at different rates. A nap will stop it draining, but not fill it back up again.

Knowing this about my body I try to weigh what is worth doing and what I can put off or modify so I don't lose as much water.

Habits

My mother and I describe ourselves as the "Queens of lists". Every week we sit down and make a list of things we've been talking about. Usually something on a deep level or something we'd like to explore and grow in some way.

Last week we were discussing habits. Specifically things we'd like to become more of a "good" habit. Here's what I came up with:

Of course I also listen to my body. She comes first and sometimes habits fall by the wayside. Like this morning we were going to go swimming together, but my body just screamed "NOPE! No spoons for that today!" And I listened. Not something I used to be able to do at all, so I guess it is a new habit after all?

Here's me participating in some new weekly habits.

My new habits combined with my refusal to compare myself to my "old" self have resulted in something I really needed. A new routine in my life. A new way of living and being in the world. Which have resulted in this!...

Vestibular Migraine Update

April 14th, 10 weeks ago now I had my first round of Botox to see if it would help my Vestibular Migraines. Here's what happened.

• Weeks 2-4 my headaches slowly faded in both duration and intensity.
• Week 6 the dizziness went away overnight. I felt the best I'd felt in a very long time.
• Week 9 the headaches came back. First just one normal feeling one, then a worse one that lasted 48hrs. Now they come on daily and I'm taking a Rizatriptan Benzoate ODT 10 mg tablet as soon as I feel it come on. That's been helpful.
• Week 10 the dizziness is back.

My next injection round is scheduled for July 14th. I asked if I REALLY have to wait that long or can I get it sooner. The answer as with all things in the US is my insurance will only pay for it every 90 days. F*#&!!!

Now I have a little less than three weeks to go and I'm feeling shitty. Although it is great to know just how effective the treatment is! I was also told that the more I have it the more effective it will be and the longer it should last.

My only side effect has been a strange muscle cramp I get sometimes in my forehead. I think that's just part of my myopathy because I'm constantly getting muscle cramps and spasms. But it looks and feels very strange. Fortunately it only lasts about a minute.

Don't lie. I look like a Klingon!
Normal is top. Muscle cramp is bottom. Really funky sensation.

I'm so grateful to have a team of doctors figure out what the heck is wrong with me. I never would have guessed all this was migraines. Now I'm counting the days till I can get 32 shots in my head again. 

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.

Disability 6 months in

You'd think after being off of work for six months that I'd be more adjusted and used to it then I am. But I'm not. I was recently approved to take my licensure exam, which when I pass, will be the pinnacle of what I went to school for. That's IF I can pass. Even if I can't actually work in this field again it's important to me personally to achieve that goal.

My symptoms are still worsening and my muscle weakness seems to be getting a little worse. It's mostly that constant pain that's worse. I always feel like I've been stretched on a medieval torture rack. 

Then there's the bad dreams. I have a recurring dream where I'm starting off walking fine, but then the pain sets in and I can no longer walk. I'm stranded somewhere with something I'm trying to do usually on my belly crawling. It's really stressful.

I also still think about my clients and my job that I had to leave behind. I don't feel like I have a "new life" or any kind of a "new normal" at all. Especially not with the world in chaos right now and trying to keep healthy. I feel stressed, upset and just heavy. Emotionally and physically. 

So rather than moan any more here's what I'm doing right now that helps me.

Ok, so that was going to be it... followed by another list of happy helpful things. But then I realized:
1) I'm not "moaning" I'm sharing important feelings.
2) It's my blog and I can write about whatever the f*@& I feel like.
3) I have no idea where this pressure to "not complain" on my own blog is coming from, but it's worth looking into.
4) I have a right to my own feelings.
5) Why am I underplaying things that are a big deal? Trying to brush them off? For me? For others? It IS a big deal and that's ok.
6) Where the F*$% did that come from anyway?
7) Yes I am disabled. Yes it sucks. It's ok that for now there's a period at the end of that statement.
8) Everything I do hurts me. It's just a matter of how much and is it worth it. I know I'm not alone in that, but sometimes it feels like I am.
9) Being me right now is exhausting. 
10) I hope my doctor gets back to me so we can try and find something else that will help.

(I'm not in the mood for pictures today, and that's ok too.)

Welcome to my world!

I was explaining to my husband this morning that as a person with a chronic illness I feel like the whole entire world now gets to experience my life every single day.

Can't go to your office to do a job you love?
Check
Worry about falling ill and dying constantly?
Check
Can't leave your house and do what you want when you want? 
Check
Social isolation? 
Check
Limited mobility? Can't ride the subway, train or hop a bus? 
Check 

Yup. That's my reality.

We belong to a fun local social group and I'm able to participate minimally due to my health and mobility needs. Now everyone is in the same boat so they're thinking outside the box and doing things like Zoom meetups. Because when healthy, able bodied people become affected by something, that's when the problem solving and alternative solutions come out.

Work from home everyone!
Stay safe and take care of your own needs.
Take plenty of time off when you're sick or your family is ill.
Financial compensation for your loss of income.

Where are all these solutions for the disabled population?
I'm talking globally here, not just in my town, state or Country. 

I hope when the Coronavirus crisis is over some of these changes remain in place for the percentage of the population who could use the accommodations daily. And also that now healthy, able bodied people come away with just a bit more insight and empathy about what it's like to live every day of your life this way.

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. 

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. 

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.)