8 years and 4 months

It has been eight years and four months since I first officially reported having muscle weakness. July and August were rough. So rough that I haven’t blogged since July 16^th. I had my muscle neurology check in on August 27^th. Those happen four or two times a year with my muscular neurologist. My specialist. The captain of the “A Team.” (What I call my very long list of medical professionals.) She is part of the UC Davis PM&R Clinic. “Physical Medicine and Rehabilitation.” She sees patients with muscular disorders and diseases.

But I digress.

I saw her on August 27^th. I hadn’t been since December. Since then two things had worsened. My right ankle/Achilles and my breathing. I let her know in December and the appointment before that one that my breathing felt like it was becoming more of an issue. I could feel myself struggling most at night and in altitude change. Or pressure change (the weather or in the pool.) This time I really stressed that it was feeling worse and she had me evaluated by the departmental pulmonologist. It had been two years since I’d had a full evaluation.

Breaking out the ol' nebulizer

She found that my lung capacity and oxygen levels were still good. But my muscle strength (diaphragm muscles especially) had weakened substantially. They measured at about 85% worse than two years ago. It’s bad enough that she’s ordering a new sleep study for me and another “Cough Assist” machine. I hate that fucking thing.

Right after that appointment the air pressure shifted dramatically and I had gigantic issues breathing at night. I contemplated going to the ER, it was so bad. My mom bought me some wedge pillows that helped a lot. I slept very elevated and used my nebulizer machine twice a day. That kept me out of the hospital.

Hang in there girl!

I called and messaged the Pulmonologist to let her know I was struggling so bad and that it seemed connected to the air pressure shift. Her response was “Huh, that’s strange. I’ve never seen that before. I’ll let the doctor know. You already have your referral for the sleep clinic.” In short. “HANG IN THERE KITTY!” That felt very dismissive and shitty. And despite my multiple calls since, I’m still waiting on the sleep clinic to even schedule me for my sleep study.

Beautiful flowers from a friend

Worth living for

My ankle will require a custom made orthotic. An ankle brace since my ankle is unstable both ways and over-pronating. That means my Achilles keeps stretching out of place and re-injuring. Which is why it has hurt for almost a year now. Fuuuuuuuck… So a new custom ankle brace for that and new foot and leg brace for the drop foot (which I still have on the same leg.) Fortunately my left side is fine. Some good news.

Oh good Goddess
PANCAKES with my mom!
Worth living for
Absolutely

UC Davis is becoming shittier and shittier. The wait time for anything is 3-6 months. Next week I’m seeing the Immunologist. Something I’ve been trying to do for a year. I had to see my PCP twice, my muscular neurologist once and a Rheumatologist before they’d send me to him. What a huge mess. After that is the ENT. I’m seeing them for my continued right ear blockage that seems to be neurologically based. The nerve gets irritated and then my Eustachian tube blocks. Wheeeeeee…

Also coming up is my pain injection in my Achillies, followed closely by Botox round two. It took me eight months to get my Botox back. Jeeeeeesus H Christ…

On the good news side. My new migraine neurologist is someone I like and have seen before long ago. I’m seeing him in November. And my new anti-seizure medication (brivaracetam 25 mg tablet, commonly known as Briviact) seems to be working with few side effects. Dizziness and urinary retention only. I haven’t wanted to kill myself (yet) so I call that a win. Horraaayyyyyyy…

I’m displeased. Sad about how my body is taking a turn. I’m using my chair more and more despite going to the gym and trying to walk as much as I can. Everything seems to set my body off. I had a crown re-done at the dentist a week ago and have had nothing but pain and bruising since. The kind of pain that keeps me up at night. Most of the night.

But here’s some good things.

I always have a great time with my mom, John and my sisters. Max and Margo keep me smiling, laughing and company, even when I’m in bed. Ice cream Sundays and delicious sandwiches are still to be had. I have beautiful clothes to wear. I’ve seen some astonishing nature lately. Deer, a raven, a vulture eating road kill and a massive thresher shark breaching. The swimming pool feels amazing. I got to go to the beach the other week. Just hearing the waves and smelling the air was cathartic.

My drawing of the beach

My son loves me and gives me hugs. I have a good friend coming down to visit from Texas in September. I still beat my husband at games. Summer is almost over and I can smell autumn in the air. My favorite time of year. My 32^nd wedding anniversary is coming up. That seems hard to believe that we’ve been married for so long.

Saw some "Glossy Ibis" with my mama

I love seeing new things

Although it’s easy to feel angry and overwhelmed by my health and what I “can’t do.” There’s still plenty that I can do and that I GET TO DO. I can’t forget that.

 

 

 

 

Emotional Intelligence

The most important skill that I have learned is how to not let other's emotions and my own emotions impact me. Even now it is still challenging to remember to use my techniques to not let strong emotions affect me. But my ability is there and more often than not I can manage it.

What's the secret?

For me it goes like this...

1) NOTICE. I can't change anything I don't notice. I notice my own strong negative feeling and how it's affecting me physically. Or I notice that someone close to me is having a strong emotion and how it's making me feel physically. Step 1 glides right into step 2.

2) FEEL it in my body. Does my chest feel tight? Has my breathing sped up? Are my shoulders rising?

3) CHANGE. I slow my breathing intentionally or take a deep breath if my breathing stopped. If the negative emotion is external then typically the person will also take a deep breath automatically. I relax my shoulders and check my posture. 

4) VISUALIZE. If the emotion is particularly strong, it is helpful for me to take a moment for some internal visualization. I picture the emotion as water washing over me, but not through me. Or I'm sitting on a riverbank watching the emotion go by, floating on a leaf. Sometimes I picture my emotion is a stone that I'm holding in my hand. This helps me examine it more closely. Why am I feeling this? What can I do to resolve it?

For example... Something happens to make me feel angry.

1) I notice that I'm feeling angry.

2) I feel the anger as a knot in my stomach and see that my fists are clinched.

3) I actively unclinch my fists and start deep belly breathing.

4) I hold the anger as a fire ball in my mind and examine it. What just happened? If my anger is valid, I imagine I let it go like a dragonfly into the universe. If not I look within to see why what just happened made me feel so angry. Am I instead feeling afraid, vulnerable? Anger is often a shield for other emotions.

I can easily go through life being continuously reactionary. It's not at all hard to do. I'm very empathic and pick up on other's emotions easily. Being able to filter out what warrants a reaction and what is just better to let pass is the most important skill I've learned. It helps me feel calm, centered and saves my energy for much more important things like love.

Overwhelmed

This week has been insane. I'm about to see my mother face to face for the first time in 15 years, my temporary disability was approved, my husband is going away for the weekend and I cleaned out my office to move 100% to working from home. 

Usually any one of those things would set me into a tailspin of feelings, lung crushing anxiety, nights of insomnia and nightmares, cold sweats of insecurity... but oddly enough I'm actually coping. Coping really well. ON TOP of working 30hours this week. Not easy to do feeling how I feel even during a stable week. But to do it THIS WEEK? I seriously deserve an award. 

"Overwhelmed" is almost as familiar a feeling to me as "frustrated". So what's keeping me cool this week? I think it's the following.

1. I'm sharing my feelings. I'm letting my loved ones know that I'm feeling sad about giving up my office and mad that someone I don't like will be moving in. I worked very hard to get that office and it symbolizes a lot to me.
   
2. Awareness. My office is just that... a symbol. I'm the one who made it special. My job is just changing, not ending.
   
3. Asking for help. I've been communicating with my husband about the disability process and asking for help with it (like the whole evil math thing).
   
4. Not being impulsive. This is huge for me. I tend to do things I don't like quickly just to get them done. But I'm not rushing with the disability information. I want to understand the math and be clear on my options.
   
5. Resting. I'm not putting everyone and everything first. I'm coming first this week. What I want and don't want. What I can do and can't do. I'm going to bed early and resting whenever I can. That has been helping a lot!
   
6. Mindfulness. Staying focused on the present moment. I remembered the other day that I am a "human being" not a human doing. So be. Don't project into the future or the past. Time travel is not needed here. Just my attention to the right now. 

I'd be lying if I said I was a chill Buddha cucumber. But I'm also not a distracted wreck. And I'll take that!

Frustrated

I think that's the number one word I would use to sum up my chronic illness. "Feeling frustrated" a good majority of the time. 

A big cause of that feeling comes from the moving target of my kind of illness. I literally never know how I'm going to feel, what I can or can't do, from one second to the next. I can kindove have a plan. I can guess. I can take what I think will be preventative measures, but there's zero knowing where my body will end up.

Case in point last night. I was coming off a hard weekend where my body just needed a lot of TLC and rest. I missed out on a lot of fun things we had planned (= frustrating). Then last night something was wonky with my breathing all... night... long. Was it asthma? Allergies? My lung muscles not working? Too much dust in my room? Heck if I know. I just had a very hard time breathing and slept like crud.

I'm a problem solver by nature, so this morning I look up tips for night breathing and find my pillows are long overdue for a wash. Not the case... the pillow. And my favorite soft one that I keep by my face (along with my stuffed shark) haven't been washed in at least a year. Ok, good place to start.

Me and my buddy Bruce

Then how about using my inhaler more? I thought I already was, but can't hurt. I already have an air filter in my room, but is it positioned right? And how about that throw rug, does it need a wash? And here we have my entire day.

Now my whole Monday has gone from everything I had planned on doing to trying to make my room as "lung friendly" as possible. This is life with a chronic illness. And it is very frustrating!!!

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.