Monthly Archives: March 2016

That Husband of Mine

I was scrolling through the thousands of pics stored on my iPhone and came across a photo from my little Tennessee wedding.  I realized that I have not mentioned the amazing support my husband, Ernie, is giving me through this MS stuff, and through the Dad stuff. 

He’s here at the hospital. He visits me. He visits Dad. His sister-in-law had a knee replacement and he was up visiting on her floor too. 

He goes home and takes care of the dogs. He’s buying stuff for the house to make things a bit more accessible for me. He’s going to handle getting Dad into an assisted living facility. 

He brings me cookies and muffins and coffee.

He brings me love, encouragement, strength, hope, courage, safety, peace of mind. All of the good stuff.

 Laura and Ernie posing at front door at 556 Roxanne. Dr. Antioch, TN 6-19-2010 

Ernie makes it possible for me to be me. I’m the most fortunate girl on the planet! I am loved and I love!

What about today?

PT (physical therapy) at 9:00. That’s not so easy because mornings are not my thing. It’ll wake me up and get me motivated. Balance is my number one priority for these sessions. I’m hoping that every exercise I do causes my brain to make new and better connections. 

OT (occupational therapy) at 9:45. Yesterday I folded clothes and practiced walking in the kitchen with a walker while moving a jug of juice from point a to point b. I don’t plan to need the walker at home unless I’m having a flare-up, but learning these skills is important. Learn about flare-ups at this WebMD page.

We meet with Dad’s care team on the psych floor today to discuss what’s next. It’s gonna be okay.

PT and OT again later today. Meals, snacks, nap.

I want to start my position paper for class. I’ll be arguing that public libraries are still necessary and relevant. People have been trying to put libraries out of business for years, but they fill a need in society, and I intend to show it. It’s funny that I have a lot of passion about libraries, but I don’t want to work in one, and I don’t  visit the Monroe County Public Library all that often. I do use their online resources extensively though. What I learned in the Management of Public Libraries class will serve me well for this essay.

Other randomness: I would like to put together a post about MS and different exercise modalities.  I’m thinking about the hoopla hoop to start with.

Hooping Lady

Daily Post-Conceal

From this Dailly Post

I would like to conceal my walk. I would like to conceal my frailties, and hide my humanity.


I’ve been having trouble with walking for a long time now. I felt my walk was uncoordinated, weird, funky, dysfunctional, inefficient, and just plain wrong. Turns out I was using legs that were being compromised by MS symptoms.

I have some good leg and some bad leg days. On a good day I can go about my business without having to constantly analyze and criqique my gate. On bad days, I think too much about how I’m walking and I worry that people are watching me and wondering what’s wrong. If I hear footsteps behind me, I get a sudden pang of anxiety. I want to make sure the person behind me thinks I’m a normal functioning person.  Let’s save talk about worrying what other people think for another post.

Sometimes a well-meaning person will comment on my walk. Sometimes they think I’m injured or in pain. When this happens I tend to get defensive, but I try and joke it off. Now I can say “well, I’ve got MS and this is not one of my better days.” Or I could just shrug and move on.

Here’s an interview with Montel Williams for inspiration.

 

Schedule and Goals

I have my first therapy  schedule. They are a little relaxed on the weekends here, so the sessions just happened when someone came to get me . Now I can have a sense of structure.My therapy schedule My number one goal for the short term is to be allowed to get up from sitting without supervision.

Toward that end, I’ll try today to not lean on the walker when I’m moving about.

Baby steps.

Wake Up Feet

I guess this is day 3 of rehab.

Sleep was choppy last night, but I’ve had choppy sleep for years. I used to say that I haven slept well on a consistent basis since 1978. Had I begun blogging as a child in the 70s I might be able to back up that statement. Now I say it just for effect. 

These are my feet. They move fine, but feel like stone. Am I becoming Thing from Fantastic Four? This was an excuse to use the Boomerang app.

  Had some occupational therapy this morning. Arm pedal, 2 lb. shoulder presses, no brain stuff. Later I’ll have to do some sort of puzzle activity.

The doc is reducing the muscle relaxer that I took yesterday by 50% so I won’t fall asleep so quickly. I’ll take the full dose to get sleep at night. I might be able to sleep well when I get home with this drug. Even with Sadie being a bed hog all night.

   And with Riley doing what he does.

    

I did some stuff on the Wii today. My balance is a mess! I walked without the walker, and I walked backward. I think my neurons are finding a way to make new connections.

The therapist I saw yesterday and today seems to be under the impression that I’m going to continue to need to use the walker. I intend to leave here without using it. He’s good at what he does, but the other guy seems to have more faith in me. These people don’t understand how much I’ve been dealing with this for the last several years.

Too sleepy to finish my paper today.  Maybe can try later.

Just as I thought

Over the past 10 years or so I’ve had symptoms that looked a lot like the start of Multiple Sclerosis (MS). I was too scared to go to a doctor and find out if I did have it. Last year I finally broke down and talked to the doctor and I went through a series of tests, but no one really thought if was MS. Even the Neurologist I went to thought Imight have a condition called Charcot-Marie-Tooth. Testing showed that I didn’t have that.

Now I’ll talk about my Dad’s health and how it relates to mine. He has a history of severe depression and has attempted suicide twice. His emotional health began declining around last November and I was very concerned about him. I was getting really stressed out as I watched him suffer with depression and anxiety. I think the anxiety was the worst of it. His worries began to affect his physical health. He was fatigued and wanted to find a doctor that could fix him with some magic cure. He just kept sinking lower and lower and that became a drain on my time and my emotions.

Last Monday night I noticed that my right foot was getting numb and tingly. That’s something that happens when I’m coming down with a cold or just feeling fatigued. I thought it would resolve itself the next day. It did not. It got progressively worse. I went to the Urgent Care facility and they thought it was sciatica. I got some drugs that didn’t work. I went for a massage thinking that would do the trick. The massage was nice, but I was still in bad shape. Walking was difficult. I went to the emergency room the Sunday and got a bit misdiagnosed. Things were at their very worst on Tuesday morning wo we want back to emergency and brought in a neurologist. He admitted me. A lengthy MRI showed lesions on my cervical spine – very consistent with MS. I got a spinal tap that night. It wasn’t so bad. The next day I got an EEG while looking through one eye at a red square surround by black and white squares on a screen. That measured how my optic nerve was working .The results of that punched the diagnosis closer to MS. Then I got an MRI on the brain. It showed that I had many lesions in the brain. This is very much an MS indicator. The last thing to seal the deal was the spinal fluid that was sent to Indianapolis for testing.

While this was going on my father fully broke down. He called my husband Ernie and said he couldn’t make it. Ernie brought him to the emergency room and now he’s on the psych ward on the floor above me in the hospital. I don’t have to worry about him because he’s getting help. There were actually days when I would come to his apartment half expecting him to have killed himself. Now he’s safe and I can focus on me.

So it’s official, I have MS. I was sad when I realized that the diagnosis was probably going to come in, but I was also comforted to finally know what has been wrong with me all these years. I always thought I had bad pms, or my problem was from perimenopause. I wouldn’t be surprised if these contributed to the MS symptoms.

Now I move forward. I will transfer to in-patient rehab on the second floor of the hospital. They work you 3 hours per day (not all at once). I’ll be there at least four days and maybe two weeks. I’ll get new medication that the doctor thinks will work for me. When I’m discharged I’ll have out patient PT. I ordered two books on nutrition, I’ll be getting a shower chair to use on days when I don’t feel fit to stand in the shower. I will do yoga most days, because I really have to. I will mediate.I will take a beginning modern dance class because I need to go back to my dance roots. I will be more messages. I will cook healthy meals for myself. I will continue to create art and make jewelry. I will nurture my soul by creating, and moving, and breathing, and singing, and loving.

Sometimes you get that kick in the pants designed to make you better. Losing my full-time job a few years ago was one kick, this is another. I’m ready to face the challenge. I’m ready to stop spinning my wheels and wasting time.

I’m ready to create the life I want to live.

img_0671

And of course there may be rough times, but I’ll get through them. There’s no other choice is there?

I will keep you posted. Maybe post pictures of food I cook.  You can follow my creative journey on this other blog.

These are the books I ordered.

Meals That Heal Inflammation: Embrace Healthy Living and Eliminate Pain, One Meal at at Time

The Inflammation Free Diet Plan

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