Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Just Doing My Best

I'm done with Zepbound. The side effects were too much for me. Bloating, burping, constipation, painfully slow digestion... I felt like I had bariatric surgery. It took away my cravings, which was good and bad. It also dulled my love for food. The enjoyment of eating.

In one way that gave me insight to what "normal" people must feel like. On the other hand I felt sad to have no pleasure of eating. That "spark" was gone. 

When my Nana died I found books and books of weight loss tips, recipes, smoothies, advice, drugs... in her home. She was always a bit plump. Not big, but average. As long as I can remember she was on some kind of weird diet and trying to get all of us to do it too. I remember being given these giant green spirulina pills when I was young. They tasted like swamp goo. And for the record I was not a big kid. Maybe she did it for "health?" 

I was struck with how much of her life she wasted on all of these things that don't matter. Didn't matter. Her clothes size, her belly, her back fat, her "bingo" arms. She was beautiful to me. I was determined in that moment to not let all that "noise" screw with my happiness. The people in my life love me unconditionally, no matter what size I am.

She was perfect just the way she was.

Somehow I had already forgotten that lesson.

I do want to lower my weight for the sake of my joints and muscles. But I am beautiful, stunning and perfect. I don't need any weird food to do it. And it's ok to have ice cream for dinner every once in a while. 

It All Broke Loose

Uh Oh.

Day 2 went really good, but night the night time. At around 10PM I literally shit the bed. I had horrible diarrhea like I've never had before. Never in my life have I been unable to get to the toilet in time. I'm not sure if that speaks to my mito disease, or how bad it came on.

It lasted about 20hrs. I think it was because I was so scared of getting seriously constipated. I had put Metamucil in my protein drink, drank laxative tea twice a day and even took a stool softener. So now we know what happens when you make foolish choices like that. Nothing good. Nothing good happens my friend.

I was very lucky that my mom e-mailed me and reminded me about the large sanitary pads that she gave me years ago. I knew right where they where. They were a huge life saver! I don't know what I would have done without it. Maybe just camped out on the toilet for hours and hours. Ugh.

I seriously need to be more careful with what I put into my body especially. 

Pun intended. That was shitty.

Zepbound Day 1

As I mentioned in a previous blog I'm trying out the new weight loss injection Zepbound. I did my first dose last night before bed. I had some minor nausea, but then I was quickly asleep. 

I was warned by the doctor to be careful with how much fat and fiber I eat. Lots of fiber, very little fat.

Unfortunately my poor stressed out husband just got his labs back and they showed his blood sugars are back in the "diabetic" zone. So now is a very good time for both of us to change our ways. 

For breakfast I made myself a protein shake. In it was...

1 cup of each:
Orange juice
Oat milk
Frozen mixed berries

1 small banana

2 scoops chocolate protein powder

1 scoop of each:
Metamucil
Raw coco powder
Ground flax

Lastly 1/2 a scoop of Collagen (It makes the shake slimy so I can't use much of it.)

It tastes like a chocolate covered strawberry to me. Not bad at all. Just a bit gritty. 

That made 2 pints. I drank one and put the other in the fridge for tomorrow.

With this I'm having "Smooth Move" organic tea for constipation. Yes, herbal tea instead of coffee. I hope all this doesn't give me the opposite problem. Hahah.

Protein shake, tea and water.

I just got a new tattoo, so a lot of protein is important. Same with reducing my calories.

It's chicken salad for dinner. Wish me luck!

My new shark tattoo

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.