All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

Friends are a Necessity

I am very much an introvert. I don't like big groups of people, lots of noise or parties. I like close friends I can trust and having fun in small groups (or better yet with one or two people.) BUT I also know that humans are social animals and that sometimes nothing is healthier for you than to spend time in a group. I've also been struggling with depression lately and craving a community of others who have similar physical and health issues.

I was fortunate to be directed to a Muscular Dystrophy "Mixed Diagnosis Group" in my area that meets monthly. My husband and I went to our first meeting in May.

At the group I saw people of all ages and all abilities and all but one were using a power mobility aide. It was so refreshing to be in a room full of people who shared the challenge of mobility together. Even though I had just met all these people I felt a sense of community with them. 

I'm not that great at holding onto friends. My husband has friends who have been in his life since grade school. I on the other hand seem to go through friends like ice cream. Enjoy them when we're together but don't really miss them that much when we part. Honestly most of the time I feel like I only really have the energy for my marriage, my job, my son and my dogs (and even then some days not enough for those things.) To add another relationship on top of those already precious to me feels about as realistic as me climbing Mt. Kilimanjaro. Aka: not at all.

But checking in once a month? I can do that. Meeting up with our friends once a month or so for dinner and drinks? I can do that. Not only can I do that, but I find it meaningful and fulfilling. I enjoy other people in my life and it helps me get out of my head and body when I do engage with others. Which in turn is good for my health. So yeah... it's worth the spoons. 

Is it or isn't it?

Back in April of last year I was diagnosed with Rheumatoid Arthritis (RA). But recently I've started doubting that diagnosis. I think the symptoms of RA mirrored what could have really been Metabolic Myopathy.

Symptoms of RA include:

• Fatigue
• Pain
• Swelling
• Redness
• Joint Stiffness (especially in the morning or when getting up after sitting a long time)
• Joint Warmth
• Loss of range of motion
• Both sides of the body usually affected the same
• Anemia

The symptoms of the type of Metabolic Myopathy that I have (Primary Coenzyme Q10 Deficiency):

• Fatigue
• Weakness
• Muscle spasms (dystonia)
• Poor muscle tone
• Progressive muscle stiffness
• Abnormal eye movements
• Some other serious stuff I don't have like seizures and kidney failure

What led my Rheumatologist to think I had RA was an abnormal MRI on my right hand (some water retention and swelling) and some abnormal labs. But now I'm wondering if that also couldn't have been MM? 

My muscles have been hugely affected lately by the bronchitis I came down with. Something that my Neurologist said could happen. Last night my hands hurt so much it woke me up multiple times. My hands hurting is one of the first symptoms of RA that I had. But when I thought about it I'm not sure it was a joint pain hurt. It felt more like it could be the muscles in my hands.

The same thing happens to the bottoms of my feet. It can feel like I've been walking all day over rocks and in reality I hardly walked at all. It's very strange. Another major symptom for me is my peripheral neuropathy. As far as I can tell MM can cause that. RA does not. I always assumed it was a side effect from my TB treatment, but now I'm not so sure. Of course I could just also have both (gag).

I'll have to talk to my doctors about all this and see what they think. I'll be curious of the hand and foot pain get better when I'm 100% no longer buggy. 

Nature Cure

Where my husband and I live is packed with beautiful nature and accessible trails. The weather has been so beautiful that the other day we packed my wheelchair "Ariel" into the car and headed out to our favorite spot. It's a beautiful garden area nestled next to an Oak Tree forest full of every kind of oak you can imagine.

Being at the ocean and in the forest touching nature is completely detoxing for me. It brings me back to center and eases my mind like little else can. On our walk I even managed to hoist myself up a little bit so I could fully sit in my favorite leafy Oak. It was wonderful.

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!

Wheeling through arizona

My husband and I recently took our second trip with my electric wheelchair "Ariel." The first time we took her to Oahu, Hawaii. This time we went to Arizona. Even though my Metabolic Myopathy has improved with the mega dosing of Q10, I still can't walk long distances or for a prolonged period of time. That's where Ariel is super handy. I also have my matching cane for shorter distances, which is a fantastic tool.

I have a travel bag that I bought with my chair. It was worth every penny. It keeps her safe in luggage handling and makes it easier to transport her for the handlers (and my husband.) Here he is putting her in the bag at the gate before pre-boarding. 

Since I am able to get in and out of my wheelchair, with regards to TSA I hand her over to them for a full check while I go through the body scanner with the able bodied people. I found this is easier on me than going through the full check in my chair as I have to get up and down a lot and that's hard. It's also usually faster. That is it's faster IF they don't get some weird chemical reaction from your chair, and then make you go through ANOTHER chair check and a full pat down (true story that happened on the way home.) 

It's great to have my own chair in the airport because no one has to push me and I can handle my own suitcase. So far no damage has happened to my precious chair either. YAY!

In Hawaii (my first chair vacation) My husband bought this plumeria sticker for me and I put it on my chair. The plan is to get a new sticker each place we go!

It was easy to get around our hotel in the chair. Though just like when we went to Hawaii I don't think our room was actually a handicapped room. There were no bars in the shower (which I REALLY MISSED!) And I was glad I was able to walk around our room on or own or there could have been some issues. I think it's best to book on the phone with a real person and request an accessible room vs online. Next time that's what I'll do. But this time we were on the first floor which made a big difference. Elevators are doable, but a pain and who needs pain on vacation?

We more or less staid around our hotel for this visit so I didn't have the issues of getting in and out of shops that I had in Hawaii. What few things we did do in the downtown area were 100% accessible. Things seem nice and roomy in Arizona with very wide sidewalks, wide streets and accessibility in mind. I appreciated that. 

All the hotel staff were very friendly. The lounge chairs by the pool were a bit tricky to get in and out of, but I managed. That's where my cane came in super handy.

And like I said before, I also wore a bikini for the first time since I was about three I think? Never in my adult life have I worn one. Never is too long if you ask me.

Fearless woman that I am (thank you brain tumor) I also got a new tattoo!

PS: We flew Southwest this time and I FAR prefer them over any other airline so far. They were very friendly and it's open seating. They're serious about people with disabilities going first over people with children (who think they should get to go first for some reason.) That means I got a seat right up front (THREE CHEERS FOR SHORT WALKS!!!) With extra leg room which I dearly need when I fly. I highly recommend them.