Tag: health

Some new light

Previously

A few weeks ago I talked about being sick and having extreme tingles. I was beginning to think I might be experiencing my “new normal.” This must be how people with chronic pain feel most of the time.

Getting help

It occurred to me that relief could be found with the help of a chiropractor, so I made an appointment with the doctor my brother and sister-in-law see.

First, Dr. Morrow talked with me about my issues. Then he examined me and found that the range of motion in my neck was far below what it should be for someone my age (almost 48.) He took some x-rays and scheduled me for a follow-up appointment for the next day.

Diagnosis

My neck is a mess! A normal cervical spine has a curve like this:

Case courtesy of Dr. Andrew Dixon, Radiopaedia.org. From the case rID: 32505

Mine curves the other way. It’s called retro lordosis. I also have some disc degeneration, spondylosis, and a few other minor things that I won’t bother mentioning.

The fix

Luckily, things can get better. I’ve started getting spinal adjustments, ultrasound treatments, and traction three times a week. I’ll be getting physical therapy as well.

I’m feeling so much better. My range of motion has increased, and I no longer feel so broken.

I’ve been feeling angry at my body for having MS, being overweight, walking weird, etc. Nothing good can come from thinking that way. I need a paradigm shift!

Moving forward

Now that I’m feeling like a human, I can get back to regular blogging. I never realized how much energy you need to sit in front of a computer and type and think.

Coming soon

I see the Hematologist find out if my MGUS has progressed to Multiple Myeloma.

Sneak preview: My M protein number is higher than it’s ever been. 1% of people with an MGUS go on to develop Multiple Myeloma each year. The odds have got to be with me.

Illustration of dice

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The not so common cold

I think I’ve been suffering from a cold for the last week or so. It’s hard to tell with me. When I think I have a cold, I get a little post-nasal drip and congestion behind the eyes. I don’t get the traditional stuffy nose. My energy level is lower than usual, and I need to sleep longer than I usually do. During these more prolonged periods of sleep, my dreams are more intense and involved.

I think that my colds last longer because I have MS.

Do a search on ‘MS and the common cold,’ and you’ll find tips on avoiding a cold like staying away from sick people and washing your hands. Some sources hint that a cold might trigger a relapse. When I see that, I start to wonder if I’m having a relapse. I tell myself that probably isn’t the case and then start Googling.

So much and so little

It seems like there are tons resources for learning about MS. It seems that way, but I keep running into the same info. Maybe I’m looking for something that will apply to me specifically. That’s not going to happen, because MS is different for everyone who has it.

Rest is important

All of the experts emphasize the importance of rest. I was looking for something definitive about overdoing it and having a relapse. I couldn’t find anything, but it seems like it’s a good idea to treat yourself well. Get regular exercise, but don’t push yourself to exhaustion. That’s good advice for all of us.

Here’s a brochure from the National MS Society on managing MS fatigue. It doesn’t have the personalized answer that I’m looking for, but it gives me permission to take a few naps every day. I might just give that a try.

The quote is from Lalah Delia. Learn more about her here.

A resolution

I’m not going to lie. I’m concerned about the state of the planet. Just read news to find out what’s going on. It’s kind of a mess.

Maybe don’t read the news so often. What if I were to spend significantly less time staring at my iPhone? What if I made more physical art than digital art? What would my life be like if I did some writing with a pen on actual paper?

I can’t change the world, but I can change the way I respond to it.

That sounds like a new year’s resolution.

Very little is needed to make a happy life; it is all within yourself, in your way of thinking. Marcus Aurelius Read

Fun with imaging

I got my yearly brain and spine MRIs on Monday. I’m fine with being in a confined space for a significant amount of time (the whole thing takes about two hours). You even get music these days. I think they use Pandora. I chose music from the 80s. The 80s and the 90s were my eras for music by the way. I was treated to some Janet Jackson, Dream Academy, John Mellencamp, Duran Duran, Roxette, Chicago, Julien Lennon, and Power Station. There must have been more, but that’s what I can remember. I fell asleep for a little bit.

MRI on screen
Stock image of an MRI in progress

Anyway, the worst thing about the MRI experience is the feeling of nausea and sometimes near vomiting that happens when they inject the contrast. I warned them at the start and had the lab tech bring a receptacle for me just to be sure. She started the contrast and asked how I was feeling. I was okay. Then she said they had begun using a new formulation of the contrast that had fewer side effects. It was like a miracle. I did not feel any nausea. For once, this yearly check on the lesions on my brain and spine caused by MS was a reasonably okay experience. The worst part was having to get there at 8:00 in the morning.

The doctor’s office called on Tuesday to say everything looked stable. I’d say the three Copaxone injections each week are doing the trick. I’m hoping I can get on an MRI every five years schedule. If that’s a thing they do.

Three years until my first colonoscopy! Huzzah!

Walking the walk

I can’t remember exactly when it was that I realized I forgot how to walk correctly. I don’t know that there is necessarily a “correct” way to walk, but a time came for me when walking didn’t feel natural. Now I know this was a symptom of my undiagnosed MS.

I looked for gait training resources on the internet. I picked up pointers from The Gait Guys, and Core Walking with Jonathan FitzGordon. I started to pay attention to the way my feet were striking the ground. I adjusted my posture. I tried to walk with my toes forward instead of turned out like a dancer. I thought about hip flexion, and arm swing, and hip rotation. All of this only served to make me more confused than ever. Trying to make your walk natural is probably the most unnatural thing you can do. It was for me.

The blogger at 2 or 3 years old
When walking was new and natural.

Now that I have an MS diagnosis and I understand why my walk is a little weird, I’m not as worried about it. I still try to be mindful of posture and heel strike. I have a little bit of foot-drop on the left side, so I make an effort to dorsiflex to reduce the risk of tripping and falling. I guess it’s possible that my body and brain have made adjustments to overcome the neural miscommunication that MS causes.

That being said, I still feel self-conscious about the way I walk. I tell myself that people are not watching my walk and judging me on it, but I also feel that people must be watching and judging.

Nothing to do but take life one step at a time.

Little Meltdown

I felt a bit broken the other night. I was watching Crazy Ex-Girlfriend (like I do). They did a musical number that was a Soul Train. takeoff. You know the bit where the dancers make two lines and people. take turns showing off their best moves for the camera. Heather, the character played by the gorgeous Vella Lovell, took her turn. As I watched her, I started feeling sad that I can’t dance like that. I started feeling sorry for myself because MS has taken away my ability to do what I want to do with my body.

The truth is that although I have a Bachelor’s and Master’s degree in dance, I was never a great dancer. So me thinking that I could dance like before MS Vella is ridiculous.

I was in bed with my husband when I had my crying meltdown. He reminded me that I can still dance. I can. I don’t use a wheelchair or a walking aid. He also brought up the fact that I’ve been a bit burned out on dancing for several years. He also suggested that any dancing that I want to do would be easier if I lost some weight. I do need to lose about 30 pounds, but let’s not get into that right now.

The day after the meltdown I felt some measure of shame. If it’s true that I chose to have this illness (when I was between lives), as a means of fostering spiritual growth, I have no business whining about it.

Also, there are so many people who have it worse than I do. I should be grateful for the strength that I do have. I’m not broken. I am perfect.

Laura McCain Reed
Non meltdown moment

Vella Lovell
Here’a Vella

Space and Time

Sometimes I write about how Multiple Sclerosis is treating me. I can’t say that I struggle with the condition, because for me, it is not that bad. I belong to an MS support group on Facebook and see so many people posting about the difficulties they go through because of the disease. I’m grateful that things are pretty good for me.

My worst symptom

The disconnect between my brain and my body makes walking somewhat difficult. For me, walking is not natural anymore. I think too much about the mechanics of walking just about every time I get up and take a few steps. I worry that people see me coming and think, “she sure has a weird walk.” It’s funny how your ego tricks you into believing everyone is watching and judging you.

My next worst symptom

The fatigue that comes with MS makes if challenging to be as physically fit as I would like to be. I can walk on the treadmill for 30 minutes at about 2.5 mph, but when I dismount I need another 30 to 45 minutes of recovery time before I feel comfortable walking from the gym to the car. I don’t use an assistive device for walking, but I would be better off using one after a treadmill workout.

Dancing

I majored in Dance in undergrad and went on the earn a masters degree in Dance. I danced with a local modern company and with a belly dance troupe. I am still able to dance, but the muscle spasticity caused by MS is a problem. I can’t always rely on my body to do what I want it to do, for the amount of time I want to do it. I can perform a solo with little difficulty, but when I’m done, I have to shuffle off the stage, because the effort has caused the muscles of my lower legs to revolt. Dancing isn’t what it used to be.

Small collage with photo of dancer and mixed media leaf

Not complaining

It could be worse and I want to say that I’m not complaining. I think I am complaining. There are days when I wish I could be the person I used to be.

A life plan

My recent fascination with the stories of people who have had a near-death experiences led me to a book by Michael Newton, PH. D. called Journey of Souls. The work documents case studies of people Newton interviewd during hypnosis in which they recount a time when they say they existed in the spirit world after death. These subjects talk of having sessions with members of a soul group who counsel each other about what they will do in their next incarnation.

If what is said in the book is true, I have to believe. that after my last life, I chose to inhabit a body that would develop MS because I needed to learn something from the experience.

When I was a child, I remember telling my mother that when I was up Heaven I chose her and my father to be my parents. I believe more and more that this was indeed the case.

Sometimes I think that I’m supposed be be a writer, and MS is here to divert me away from dancing and toward writing. I have always had. trouble settling down to one area of interest. I’m a jack of many trades and master of none. I may not be a master of anything until my next life.

I’m event thinking about starting another blog devoted to spiritual stuff. Another example of my lack of focus.

In the blood

I’m not sure if I’ve written a post about the fact that I have a Monoclonal Gammopathy of Undetermined Significance (MGUS). Learn more about it here if you’re interested. I could tell a long story about it, but the abridged version is that I may be heading toward a diagnosis of a blood cancer called Multiple Myeloma.

The average survival rate for people with this condition is five years, but some people live for twenty-five years after being diagnosed. The treatment is a three-drug therapy: bortezomib, lenalidomide, and dexamethasone. There’s information about a study of that therapy here.

My husband, Ernie, is quite worried that I might one day be diagnosed with this cancer. I am not so concerned because I’m convinced that there is life after death. I’ll write about my interest in near-death experiences (NDEs) another time.

I do owe it to my husband to try and stick around as long as I can. This is where the non-traditional medicine comes in.

There was an Amish healer in Indiana named Solomon Wickey. He is said to have cured people who have cancer and other ailments with herbs, and diet. Ernie knew a few people whose lives were extended after being treated by Wickey, so he believes he was for real. So, Ernie did a Google search for any Wickey protégées that might be practicing. He found a blog post listing a few of them and insisted that I contact one of them. I was resistant to the idea, mostly because I do not currently have Multiple Myeloma. What would I ask the person to cure me of?

Ernie decided he liked one of these people and kept pestering me to call her. I agreed to see her if he would call and make the appointment for me. He made the call, and a week or two later we made the hour and a half drive for a consultation.

I won’t reveal the practitioner’s name unless the next round of blood tests shows a lessening or reversal of the MGUS. I will tell you that her methods could be considered kind of “out there on the fringe.” She put touched my right leg with one hand and then seemed to be sensing things about my health. When something came up, her free hand would twitch. I was willing to accept that what she was doing could be legitimate because I believe in a lot of things that haven’t been proven by science.

The consultation ended with her prescriptions me some supplements to take for weeks and instructions to come back for a follow-up appointment.

The supplements cost over $400, so you have to wonder if it’s all just a scam. I don’t know if my doctors would approve of me taking all of this stuff. I did some research and didn’t find any known dangerous drug interactions. I have had no adverse side effects so far. One of the things she prescribed is CBD oil, and I do think it’s helping me to sleep through the night. It might also be helping with MS-related spasticity. It might all be a result of the placebo effect.

That’s the story so far.

And here’s the art.

Abstract digital art composition

My Health

The one-word prompt is healthy. I can work with this one since I was already planning to talk about health.

The nurse came to my house to teach me how to do my Copaxone injection. I’ll be using an auto-inject device instead of a needle, so that makes it a more pleasant thing to have to do three times per week. So I’m on the way to preventing an MS relapse.

Injection rotation planner on the Copaxone Tracker iPhone app.
Injection rotation planner on the Copaxone Tracker iPhone app.

The flare-up that resulted in my diagnosis has just about gone away. Now it’s time to start going to the Y and getting in an hour of exercise at least five times a week. It’s also time to plan and make healthy meals. This is going to take some more work. I tried a recipe for “broccoli tater tots” the other day. It’s basically chopped broccoli with egg, breadcrumbs, and cheese. I forgot to add the cheese, so I wasn’t happy with the end product. I’m not sure the cheese would have added that much, though. I might try to make them again and remember the cheese and also, add something else to enhance the flavor. I may try a different recipe. There seem to be lots of similar ones out there.

Now that I feel better, I don’t have an excuse for not getting started on my goals for staying healthy. I’ll also be going to work instead of working from home.

Onward and upward as they say.