BEHIND the Smiles

Coming off Lamotragine has been a nightmare. I still haven't heard from any of my doctors. I first reached out to my migraine neurologist on June 8th. Eight days ago. It feels like months.

You know the popular sign "Keep Calm and Carry On." Well my motto is "Keep Busy and Ignore it All." I smile and keep as busy as I can, ignoring my side effects. 

I'm still swimming with my mom. Walking the dogs. Cleaning my house. Shopping for groceries. Doing laundry. 

Lamotragine withdrawals can feel worse in people with mitochondrial vulnerability because the nervous system has less metabolic “buffer” during medication transitions.

I need sleep, electrolytes, pacing, gentle foods.

What often helps during lamotrigine withdrawal:

• Slow nervous‑system pacing — gentle, predictable routines reduce the “electrical storm” feeling. Short, repeated cycles of rest → light activity → rest help stabilize symptoms.

• Hydration + electrolytes — withdrawal can worsen dizziness, tremors, and headaches. Many people find that steady hydration with balanced electrolytes (not high‑sugar drinks) reduces the intensity.

• Sleep protection — even small improvements in sleep architecture can dramatically reduce withdrawal symptoms.Think: consistent bedtime, low light, warm bath, magnesium glycinate (if your doctor approves).

• Gentle sensory regulation — lamotrigine withdrawal often heightens sensory sensitivity. Noise‑canceling headphones, dimmer lighting, weighted blankets, and predictable sensory input can help.

• Blood sugar stability — dips can worsen tremors, irritability, and mood swings. Small, frequent meals with protein + complex carbs are often easier during withdrawal.

• Very light movement — walking, stretching, or pool therapy can reduce the “wired but tired” feeling without overloading your mitochondrial system.

I feel like this is going to be a very slow process. I don't do well with being patient. But I'm going to do my very best. 

 

Rage and Resilience

 

Our world is full of horrors right now. Abroad women in Afghanistan are now told that they really don't need two eyes and that they should at all times cover one up. In Gaza everyone is being starved to death while reporters are bombed... intentionally. More reporters have been killed in Gaza than in every war ever put together.

At home a mad man is president. He has destroyed Democracy and women are being attacked right and left. Our rights are being stripped, our jobs, our art, our voices. The disabled are being intentionally murdered by vaccine and medication denial and no more support financially.

I'm very worried about my own disabled son who receives free medical care.

We've never been here in history before. Taken such a massive step backwards as a civilization. Men and their greed for power are murdering millions and millions of people. It's time women take power back. Men have proved they are unfit.

Personally it's very hard to keep aware of what's going on here and abroad without completely marinating in it. Balancing the fear with the resiliency. 

I do have a "go bag" packed. It contains cash, our passports, birth certificates, social security cards, medical information, all the information we need for the dogs and other important documents. My mother has the same. 

My husband made fun of me at first, but shut up after a friend of his said he did the same thing. 

We live in crazy, uncertain times right now. But even so, there is still joy to be found in friends and family.

Terrifying Side Effect

My health feels overwhelming most of the time. 

Yesterday I had a major episode that was truly terrifying. I had my annual flu shot in the morning. I've never had an issue with it ever in the past, nor with any other vaccination. Ever. Yesterday was a first. Three hours after my shot I felt myself getting weaker. By five I was terrified. I was home alone and my muscles were so weak I could barely work my phone or speak. I though about calling my mom over, but my husband was due to be home any second. I also thought about calling 911, but I didn't want the dogs upset. (Yes... even my dogs come before me.) 

Finally my husband came home. As soon as I started talking to him I started sobbing. I mean 'snot crying' big time. I could hardly get out what happened to me between the tears and muscle weakness. Somehow he understood. I asked him to make me a Gatorade. The last in the house. It has helped in the past. He then crawled into bed with me and comforted me. It was all very helpful. I decided I would wait and see if I got any worse and if I did, then I would go to the hospital. 

Fortunately I didn't get worse. After about 90 minutes after the Gatorade I even improved a little. The tide was being pulled back. I was so scared. To suddenly lose your muscle strength like you've been hit with a blow dart. It is a very horrific thing to experience. I haven't had that happen to me for about four years now. The last time I went to the hospital by ambulance. 

I still feel weak today. When I went to the hospital what made me better was a full IV fluid bag and antihistamines. Strange. My body is such a complex creature. When she's unhappy, she lets me know it with both barrels!

I've been very busy lately. Living my life to the fullest. Family, kids, the ballet, stand up, late nights, company, booze. Not sticking 100% to my short chain fatty acid diet. Working out extra hard, pushing myself over my limit. It's time to pull back and turtle up for a bit. Let my body calm down and recover.

A little taste of my busy life

Post Script - My muscle weakness got much worse after I wrote this. My neurologist had a nurse practitioner call in and check on me. I had sent them a message last night about what happened. She urged me to go to the ER to run labs and just double check that I hadn't had a stroke. 

After 3 hours there I had every reassurance that what I thought had happened was what happened and nothing else. No infection. No stroke. Nothing else. It was very scary though and I'm for sure skipping my flu vaccination next year. This morning I'm feeling much better. 

Fears

I had my eyes checked at the end of August and bought a pair of expensive glasses. Then a few weeks ago I needed more contact lenses, but my current prescription was feeling a tad weak. I went back to my eye doctor and he re-checked me. Within four months my eyes had changed a little for the worse. But that's not all...

I feel like I don't see quite as well as I used to when I'm driving. Especially at night. Part of mitochondrial disease is having compromised eye sight. That scares me.

I don't take any minute for granted with my muscles. Knowing that I still have mitochondrial dysfunction makes me fear a relapse. That I'll suddenly not be able to walk or use my muscles anymore.

Taking joy in my pottery with my cute new glasses

I combat these fears with fitness. Working out makes me aware of my body and its limits. I enjoy it. I miss it when I don't do it. I especially love Yoga. Which is a big surprise. I love how aware I am of my body when I do it. It has also helped me the most with my strength and flexibility. Being able to lift my arms above my head is a thrilling accomplishment and I feel I have Yoga to thank for it.

When I exercise it verifies what my body can do. What I'm capable of. Not what might happen in the future. Today I am strong and can still see. Yay!

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.

Finding my Limits

My husband is away on a business trip and I felt a huge urge to cook last night. I had all the ingredients to make some things that I didn't think sounded very difficult. It felt within my wheelhouse. It didn't go great.

I managed to finish off what I had started, but only out of sheer stubbornness. I didn't know where my boundaries were when it came to cooking, but I sure found out the hard way. 

It was the first time I could feel my energy failing mid-work. I could feel myself getting more and more fatigued. And I'm not talking just my muscles. That feeling I'm used to. This was something new. 

It was a slow energy drain. Like a bucket full of water that has a leak. I could feel myself getting more and more tired with each thing I did. Even just standing looking at what was cooking. It was honestly a terrifying feeling. 

I felt scared that I wouldn't be able to finish before I had to go lay down. Frightened that I bit off more than my body could chew. Shocked that such a small thing could drain me so quickly. Regretful at my decision to cook so much and not just wait for my Mom to help me. And sad for myself that I was having that experience.

The whole thing wasn't all bad though. I don't know my limits if I don't test them. I also won't understand what's going on with my body if I don't pay attention. To have that very real feeling of my energy draining rapidly due to being overloaded, as scary as it was, is also helpful. My disease isn't just all about my muscles.

I told my husband the other day that I wondered if my need to rest mid way through the day is due to my doing so much when I'm awake. Especially physical things like showering, dressing, putting things in the house away, etc. I walked a touch over a mile yesterday just by doing these things. That's quite a bit for me.

The tricky thing about my "limits" is that they are constantly changing. What I can do today I have no guarantee of being able to do tomorrow. So that makes me feel in a bit of a panicked rush. I have a constant feeling of pressure to do everything that I can today because it might be the last time I can do it ever.

(I wanted to take a picture of some food that got dropped on the floor as I was cooking, but I didn't want my dog to get it so I hurriedly cleaned it up instead. I always tell my husband "It's not a day with me unless I drop something.")

Facing Down Fear

I have signed up to take my license exam. It's the final step to becoming a fully fledged Marriage and Family Therapist. This is what I've worked so hard for over the last 10+ years. It's a very big deal and what was supposed to be the climax of my academic career. But it doesn't feel like that now.

It has been 11 months since I left my job because of my many chronic conditions. In the end it was the unrelenting migraines that were just too much for me to work through. This was my dream. To get my license and to help people and I'm still convinced I can do that in some capacity in the future. It won't look how I expected, but when does life ever work out how we plan?

Millions of people around the world have had their future plans completely derailed by Covid. Just because my cause is different doesn't make my situation any more special. Life is nothing if not unpredictable.

It has been very hard for me to study. Every question reminds me of my past work with clients and what I had to give up. I know that will fade the more that I study. I have five months before my test to work through my feelings and learn the questions. I've accomplished much harder tasks in the past.

I can almost hear the Helen Reddy song that my Mother would sing when I was little. It's very fitting to my situation. I don't always feel this way, but the strength of such mantras are helpful.

..."Oh yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong
(Strong)
I am invincible
(Invincible)
I am woman"

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

Scary morning choke

I was writing a long post about ways to take care of my body when I realized what I really wanted to talk about what how I scared the shit out of myself this morning.

Let me back up...

I pride myself in being able to swallow a lot of pills at once. It's stupid. I'm not into self deprecation typically, but come on. That's a stupid thing to be proud of. So I don't do it at night when my muscles are a bit weaker, but first thing in the morning is usually fine. Except for this morning. I popped all eleven pills of varying sizes into my mouth along with a lot of water. ELEVEN pills!

Well, the next thing I know one of the smaller buggers is lodged firmly in my windpipe. I feel the horrible familiar feeling and a wash of fear and panic comes over me. Lucky for me everything else went down the right way. I immediately lean over my bed and give a strong cough. It didn't come right out, instead disintegrating enough to go up my nose and out a little bit, but I could still feel some in my wind pipe. 

I think it was an Aleve pain pill because it burned like a mo-fo all through my nose and down. As soon as I'd cleared what I could out I knew I had to stop the burning. I poured myself a big glass of unsweetened soymilk and added about a tablespoon of honey to it. It felt lovely going down my burning mouth and in the back of my throat.

Next I sat naked in my hot shower on my lovely shower stool and coughed up as much as I could. I also vacillated between self flagellation about taking so many pills at once and being kind and loving to myself about how scary an experience it was.

With fear comes change...

I've resolved to take my pills 1-2 at a time like a normal human earthling should. I also want to take them in the same room as another person when I can. It was scary to know I could have choked to death in the bedroom without anyone in my house even knowing. It was a bit of a wakeup call to take my condition more seriously. With each cough in the shower I could feel my lungs getting more and more fatigued. 

I also had a lot of gratitude that I didn't die. Life is so fragile and it only takes one mistake to end it all. I've had many moments like that to be grateful for. It can be easy to see the hardships and miss sight of the blessings. I feel blessed today that I didn't die.

I can't tell!!!

One of the hardest things for me about having a chronic, progressive condition is the lack of stability and predictability. I honestly can't tell what I'll be able to do from one day to the next. I know I'm far from alone with that feeling of instability. But that's no consolation.

Sometimes I feel like I honestly can't walk at all. Sometimes I feel ok to garden for an hour (though I always pay for it later). Sometimes I think it's only a matter of time before I'm hooked up to a ventilator. Other times I feel my body has really stabilized. The constant uncertainty is stressful and hard on not just me. 

My family can only go by what they see and what I tell them. Of course I don't give them a constant play by play of my body. "Now I have a cramp in my left calf, now my lower back is spasming, now my right eye is twitching..." They aren't me so they can't possibly know. Or as much as they try, understand. It's terrifying. I feel a constant undercurrent of panic no matter how mindful I try to be. "Is this the last day I can walk? Is this the last time I'll be able to do this?" These are things I think about daily. 

If even I can't tell what's going on in my body from one day to the next how could my family? If I don't know what I need or what's helpful, how could they? I do know that it helps me to talk and share the important things going on with me. Including my fears.

I'm very lucky in that when I share with my family, they take it seriously. I still remember talking to my husband about needing a rollator. It was a very hard conversation, but needed. I ALWAYS feel heard, respected and helped by my entire family. Which when I can't tell what's going on with my body is just what I need. 

I've learned what doesn't work for me is pushing myself too hard just in case I won't be able to do something in the future. It's what I have a tendency to do and my body doesn't thank me for it. I need to take it slow and cross each bridge as I come to them.

Taking Care

These are crazy times. Everything in the world is changing so fast, on every level that it's hard to keep up. People are dying in record numbers and our economy has completely crumbled. It's easy to get caught up in the tsunami of panic and fear that has brought us all to our knees. 

I'm one of the very lucky few. I feel like my town is a bubble, isolated from what the rest of the world is experiencing. It's spring and people are out on their bikes, walking their dogs, singing in the streets (while keeping safe distance from each other). I have plenty of food and fresh clean water. Everyone I love is safe and healthy. 

BUT... I also know all that can change in an instant. So everyone needs to take care. Here's what my family and I are doing.

1.  Staying inside as much as we can
2. Washing our hands constantly and thoroughly
3. Washing clothes we wear outside right away
4. Disinfecting commonly used things daily (door nobs, phone, toilet handle...)
5. Keeping our distance from others when we do go out (dog walking and food shopping only)
6. Taking vitamin C daily
7. Eating healthy foods (veggies, fruits, foods high in vitamin C and protein)
   
8. Getting lots of rest
9. Knowing the difference between allergies and CV symptoms
10. Keeping in touch with friends and family through Zoom calls, texts and e-mail
11. Not reading too much news
12. No news before sleep
13. Getting physical activity every day
14. Keeping routines like meal planning, night TV...
15. Talking openly about our feelings with each other
16. Checking in with neighbors regularly (we all come out and make noise at 7PM)
17. Helping others when we can 
18. Accepting help from others (like my mom sharing her meals with us)
19. Not living in fear
20. Being mindful and having gratitude

Laughter and play have very important roles during times of such major stress. It's vital to release that tension in fun, healthy ways. I'm trying to write and do some kind of art every day. This has been helpful for me. I'm also not wearing black intentionally and keeping my clothes bright and cheerful. This helps my mental health.

I'm praying all of us stay healthy. Stay inside. Take care of yourself!

Living in fear

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

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

Shopping at Costco with my cotton gloves on yesterday.

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

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

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

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

1 Week Out From Brain Surgery

My Meningioma will be removed in exactly 1 week from today. I have many feelings about this. "I don't wanna" is probably the most dominant thought right now. "You can just run away" is the second thought I have. Though neither are really feelings. The feeling behind both of those is fear. Though I can't really pinpoint what I'm afraid of? I have faith in my neurosurgeon and know how routine this is for him. I have great heath care and lot of support. Logically I even think I'll recover pretty fast. I think maybe the fear is coming from pain. Far more than death I fear pain and suffering. It's going to hurt and I'm going to suffer. There's no avoiding that fact. And that's at the heart of what makes me want to run away and go to Disneyland.

My husband and I at Disneyland last November. 
We totally drank the Koolaide

All this week I've been watching YouTube "ride throughs" of Disney rides. I found it ridiculously comforting. This was my favorite one that I found. It's the Pirates of the Caribbean Ride in Shanghai. I didn't feel bad watching it because I know I'll never go there in person, so it wasn't a spoiler.

I think there's many reasons Disney has been on my mind this week. It was a wonderful vacation we had there last November. We hadn't been in years and years and doing it without your kids is a completely different experience. We had a blast. So happy memories like that absolutely combat stress. That's one reason. Another I'm sure is escapism. Watching Disney transported me to another place that had nothing to do with work, family, brain tumors, mobility issues. You just sit and watch and let everything real slip away. That had a lot of appeal this week.

The only pain and suffering in Disney is inflicted by super cool villains with bitchen castles, swag and backup.

So I guess you could say my attitude about my brain tumor this week has been one of avoidance and indulgence. And I'm more than ok with that. During these super challenging life events I'm a fan of "whatever works." Whatever keeps me going through the day so I'm not crying is a win. Whatever gets me up in the morning to face another to-do list is victory. Whatever stops me from getting in my car and just driving away is an accomplishment. Whatever it takes. I can get through this. "I can go the distance." Hahah! I couldn't resist.

(that's a line from Disney's Hercules in case you're a Disney nube.)