How Lucky Am I?

It can be hard to remember how lucky I am right now, given the political world. But in many many ways my life has never been better. And since nothing lasts forever I really want to remember that.

I have my huge family around me. 

I didn't always have a very good relationship with my mother. In fact we didn't talk for 15 years (my choice.) We have since reconciled and she lives right around the corner from me. I love it. I get to see her many times a week. We always have such fun together. Laughing, talking, just being together. I love her and am so grateful for all of the time we get to spend together.

My half sisters and I have found each other five months ago, and we now have a relationship. I have always wanted to be one of three sisters and now I am. Something I thought was previously completely impossible. I love them and I love their children. I am the "Auntie Nette" to four stunning boys and one fiery girl (who will take no shit from anyone. Especially not boys.) 

The brood

Me and my little sister

Me and the middle sister

I have a best friend who is kind and lovely. She adores animals, is a fierce feminist and warrior woman. She is also chronically ill, so she can relate to me on a different level than healthy people. We've only been friends for a few years but we are incredibly close. I know I could count on her for anything. That is rare.

She got married this past Monday

My husband and I are very best friends. He cracks me up and makes me feel so special. So seen and heard. We have a very rare bond. I'm thankful we met so young so that we've been able to spend so much time together we're going on year 32 right now. My soul mate.

My son just called me his "confidant." That melted my heart. He also lives right around the corner. Something I'm incredibly grateful for. I appreciate our closeness and that he's as close to me as he can be to someone whose not his partner. I get to see him almost ever week. I love him very much.

He just turned 31 this week

My two dogs fill my world with sunshine and howls of laughter. Peels of laughter daily. They also fill my heart and my bed. Hahaha. I can't imagine my days or nights without them by my side. Often sandwiching me like the little pack that we are. 

My life is bursting with love everywhere I look. Every nook and cranny full to the rafters with people and animals who love me and who I love back. This is the first time in my life I can remember feeling this way. I want to savor every moment of it and keep them all safe and with me as long as I can.

Weight Loss Tug of War

I had a doctor's appointment today. It was rare for me because it had nothing to do with my mitochondrial disease or migraines. I wanted to talk about weight loss.

I've been going from 298 to 285 back and forth for years now. I think the lowest I've been able to get is around 273. And that's been a hot minute. I was down to 263 about 10 years ago. Neither of those are amazing numbers though. I really should be closer to 200-220. Even though the medical industry would likely say more like 190.

As I told the doctor today. I've done it all in the past. Weight Watchers, Lean Cuisines, Therapy, Journaling, Blogging, Reading soooooo many books, Meetings, Workshops, Dieticians... Ugh. I told him I've been overweight for about 25 years now and I need some help.

My mom just started an injectable called Zepbound. He said he thought that could help me too. (No. I'm not getting any kickback for this.) My insurance has to approve it first, but he's pretty positive that they will. 

My Friend's Coconut Wedding Cake Yesterday.

Beyond AMAZING!

I'm hoping to get:

• Cravings under control
• Feeling fuller with less food
• Fewer hunger pains when limiting food
• Past that "hump" of the 280's
• Help to kick start my weight loss
  
  

I'm concerned about:

• Constipation
• My system already being slow now going slower
• More fatigue
• Other side effects

Although I'm not excited about another injectable, I am feeling optimistic. I'm going to journal a lot and try to keep an open mind. I hope this helps not just me, but my mom as well. 

Assessment and Plan

I am one of the few lucky ones.

I had my mitochondrial disease diagnosed fairly fast. I was believed and not gas lit by either my primary care doctor, nor my neurologist. I quickly worked my way up the neurology ladder until I was seen by the Chief of Staff himself who was the one to recognize my symptoms and diagnose me, even before I had my muscle biopsy and genetic tests. 

I also live in a place with world class health care. I am incredibly fortunate.

I have been seeing my "Muscular Neurologist" Dr. Lisa Williams at the UC Davis PM&R Clinic (Physical medicine and rehabilitation) for about six years now. At first she saw me every three months, now we check in every six months.

My favorite thing about her is that just like my handyman, she always has a plan. I come to her with a list of concerns and she comes up with a plan. I just saw her yesterday and this is my plan for 2025...

 Assessment & Plan

Mitochondrial Myopathy

Exacerbation of fatigue and severe weakness after flu vaccine. Generalized muscle fatigue without pain or cramping. Right side weakness reported. Stable with dietary modifications (medium chain fatty acid).

-Continue dietary modifications.

-Continue CoQ10 300mg three times a day.

-Continue Amantadine 200mg daily (refill 90-day prescription).

 

Dysphagia

Increased difficulty swallowing, particularly with soft solids. Choking reported. Last swallow study was normal. Referral to ENT for repeat swallow study.

-Continue monitoring and follow up with ENT for swallow study.

 

Migraines

Managed with new medication after discontinuing Botox due to side effects.

-Continue current migraine medication and follow-up with neurology.

 

Asthma

Increased symptoms over the past six months, potentially due to poor air quality.

-Continue current asthma management.

 

Neuropathic Pain

Severe, particularly at night. Pain is diffuse, intense, and worse with movement. Pain is primarily muscular. Current medications (Lyrica, Duloxetine, Amantadine) provide some relief.

-Consult with Dr. Chinar Sanghvi regarding potential innovative treatments for pain control such as buprenorphine or IV ketamine.

 

Impaired mobility and ADLS:

Foot Drop

Managed with Ankle Foot Orthosis (AFO) brace and soft brace for shorter distances.

-Continue use of AFO and soft brace as needed on the right. Strength stable today.

 

General Health Maintenance

-Consider low-intensity exercise classes for neuromuscular exercise.

-Consider use of a cervical pillow for neck pain.

-Follow up with sleep study results and potential need for CPAP.

No way am I going back to using a CPAP machine by the way. I get it for people who really need them like my husband. But I don't fit that category. 

Dr. Williams cares about my quality of life. She also learns a lot from me. She had another patient with similar genetic mutations try a "short chain fatty acid diet" with great success. I'm pretty sure I'm a paper somewhere.

My own plans this year include knowing my limits and paying better attention to them. Not pushing myself to "do all the things" and just try and be as healthy as I can be.

"I Don't Do ENOUGH!"

I tell myself lies.

I've always been a very busy person. Handy with my house, working, making money, enjoying others and volunteering in my community. Not to mention supporting family and friends. All of that changed dramatically when I became ill. It's something I still struggle with. That feeling of "I don't do enough." Or "I can still do that." Both lies I tell myself.

Thank goodness both my mother and my husband disagree with that statement. In fact they remind me to pull back when I need to. Which is often.

Right now we're having our bathroom remodeled and it has killed me not to do any of it myself. I did it in the past and I remember myself being very physical. But that isn't my truth right now. Now I need to conserve my energy. Now if I did something like paint a door I would be in incredible pain for days. In fact the very last time I painted in 2017 I was in incredibly pain. Looking back I think that was the very start of my issues.

My mom helps with my dogs ALL the time.

I remember being a bit dizzy on the ladder and my hands cramping so bad. Neither had happened before. At the time, both my husband and myself chalked it up to "getting older." I don't think that was the issue.

Now I don't work in an office and I don't volunteer in my community. Most days I feel like all I can do is prepare food, keep myself clean and do some small chores around the house. Some days I feel ok, other days I feel awful. I never, ever feel "good." Just levels of bad. 

So the lie that I tell myself that I "Don't do enough" couldn't be more wrong. I push myself every single day. I could very easily just not get out of bed. But I have relationships, help friends, get out in my community, walk my dogs (when I can) and try to take care of myself and those I love. 

I'm doing plenty.

Getting my eyes checked the other day.

Medical appointments keep me pretty busy.

Who do you want to be?

One of the things I love most about life (and there are many) is the chance to constantly re-invent yourself. It is literally never too late. You choose, for the most part, who you are. Who you want to be. Do you want to be a good parent? Do you want to be a scholar? A partner to someone? Adopt animals or children? Start a non-profit? Put out fires? What kind of person are you? You choose.

My newborn son's footprints. 1/23/94

This extends somewhat to the appearance you show the world. Do you chose to be a flaming redhead, or maybe a blonde. Do you only wear black with spikes on your shoes and metal chains? Do you wear no makeup at all and let your natural beauty shine through.

My Masters graduation. 2017

Of course by now we all know that there are many conditions that make it very difficult to manage weight. Hypothyroidism is one of them. I have it, so does my mother and son. My grandfather also had it. On top of that I'm over 50 and disabled, which makes the challenges all the larger. But it's not impossible.

The choices I make literally make me. 
I chose to be a stay at home mom. I have a huge "caring for others" streak that is essential to my person. I chose to go back to school and then to become a therapist. I chose to get married (one of the best decisions I ever made.) 

"
2013. Me not knowing how beautiful I was. I am.

Every moment of every day I make some kind of choice. I chose to sit down and write this blog.

Food is a difficult choice for me. I tend to be obsessive when I make a big change. Buying tools I feel like I'll need to succeed. Re-arranging my environment to best support my whopping new goal. It's the ADD in me and also a way I try to control things that are difficult to control.

I'm trying to make better food choices and to battle my addiction to food. I can feel that monster getting bigger. If I don't address it now it will take over my life, my mobility and my health. I don't choose that. 

Me in Iceland. 2014