So Lucky

“How is this my life?“ This is a question I am erasing from my inner monologue.  I am replacing it with “I’m so lucky to have this life”.

It seems easy flights are a thing of the past for me and my family. Airlines claim to be accessible and able to handle my Power Chair, but it truly isn’t the case and every flight ends with more damage and more claims for Power Chair repairs. It can be very stressful and often times my kids end up in tears because they know how difficult life is without my Power Chair. But I remind them “Aren’t we lucky to be able to fly? Aren’t we lucky to be able to take this wonderful vacation together?”

A full day of travel means no restroom breaks for me. By the end of my last fight, as I was being transferred, my bladder just gave out and I tinkled through my pants.  As I sat on the plane next to my daughter I asked her if she could see it through my pants and she said “Yes...I’m sorry mom.”  I told her it isn’t the end of the world and I will never see these people again, so who cares.  Then, over text, my dear friend reminded me that poop is worse than pee. I chuckled aloud on the plane and was so thankful for the friends in my life who have embarrassingly pooped their pants in public and lived to tell their stories. I’m so lucky to have loving friends. 

Mornings here on this vacation in Montana can be chaotic with everyone running around finding their hats, gloves, snowboards, ski boots, etc.  I’m so lucky to be here to witness the chaos. 

I’m so lucky to be here to listen to their stories, for them to show me on the ski map which slopes they tackled today. I’m lucky to coordinate movie nights and to have introduced my children to the timeless humor of John Candy.

The condo is all one level, so I am able to go into my kids’ rooms.  I am so lucky to witness them sleeping and see their baby faces still hiding inside their big kid bodies; to be reminded of their innocence.

I’m lucky too for the quiet time I have alone in the condo. Physically I am unable to do much, but I have learned I have to accept that fact and move on.  So I have moved on to wonderful movies and TV series and podcasts and books. I just started reading Stephen King’s It, reaffirming what a gifted author he is!

But most of all, above everything and everyone else, I’m lucky to have my husband, Chris, willing to help me. It is NOT easy. But because of our dedication to this love we share, the friendship we’ve had since I was 15, we’re (sometimes barely) making it work. But even something that is “barely working” still works.  We can do this. We are both stubborn and dedicated, intelligent and strong.

I’m so lucky to have this life. 

Accessible Warsaw: WCHS Cross Country Course

Warsaw High School has a lovely cross country course.  At least the part I can see from across the street seems like it must be beautiful.  My daughter's middle school team competed there yesterday, and while she ran very well and achieved a personal record, the accessibility to the area where parents and supporters of the athletes are meant to observe and cheer on the runners, is dismal.

I apologize if the pictures on this blog entry seem far away, but that is the reality for me at a cross country meet at Warsaw High School.

Looking closely, you can see way over across the street the crowd of parents and coaches attending the meet in support of their athletes.  There were multiple teams at the meet last night, and there were bleachers in place for the crowd. Some parents chose not to be in that crowd, and brought their own chairs to sit in the grass. However, interestingly, no one sat as far away as I was forced to sit.  There is a sidewalk near the parking lot, but to cross the street to go to where the course is, there is a dip in the grass, the street, then another dip and a small hill, none of which has any pavement or sidewalk that would provide accessibility for a wheelchair.

I got a great view of this wide new entry that is being  installed for the parking lot (which already has many entrances).  I plan to mention to Dr. Hoffert, the superintendent of Warsaw community schools, that while this construction is underway, common sense would be to also make the observation area of the cross country course ADA compliant.

Up close or far away, I am there to support my kids and their teammates in their activities.  I have to push aside the feeling off being unwelcome when a facility is not compliant with ADA guidelines.  

Gracie Jane knew I was there. She ran her best time ever.  I love to watch her run.  

Warsaw High School: Cross Country Course = *

(one out of five stars for accessibility)

+ ADA parking spots are easy to find in the large parking lot

-no paved area where a wheelchair can cross the grass

-no paved area near the bleachers for ADA seating

- no thought given to athletes who have family members who use mobility aids

Elder Care and Disability

I have gone to two meetings now with an elder care attorney. Today I called and made an appointment to meet with a disability attorney. These are smart meetings for me to be attending. The truth is that if my husband would die, my life gets complicated very quickly. I need a caregiver for all aspects of my life and right now my two main caregivers are my husband and my mother-in-law. I need a caregiver to help me be clean, dressed, and presentable in the power chair so that I can effectively parent my kids. Now more than ever, parenting is my priority. Take away the caregiver and I could be a pee soaked helpless lump.

So. To the attorneys we go. First I will need to apply for disability, then apply for a Medicaid waiver. A Medicaid waiver would pay for many hours a week of in-home caregiving for me. My mother-in-law, a retired RN, has been helping me for two years. She is a wonderful and kind person. It's a lot though, to have so much one-on-one time with my mother-in-law. Boundaries have become blurry.

Applying for disability and a Medicaid waiver is so much work. A lot of paper gathering and document producing; basically jumping through hoops. It's a big chore for anybody, but the majority of people are older and not in the prime of business ownership and raising children.

Also, all of our assets now have to be in only my husband's name. Everything. I know that it is only on paper, but it does feel a bit like I'm being stripped of a lot of things that I have spent the past 20 years working for. We have always been equals, joint bank accounts, joint ownership of everything. This is a tough hoop to jump through.

I have already learned a lot through this process. I'm confident that at the end of it all, it will have been worth it for the security and peace of mind that it will offer.  But it also goes on my list of one more crappy thing multiple sclerosis has brought to my life.

 

Lemtrada Year 2: Days 2 & 3

Notes so I remember:

Both days started with two needle sticks to insert the IV port. I've always had a really easy time with nurses finding a vein, but this week didn't go as well. Anyway, luckily she got it each day on the second try and the medicine started flowing.

I was super snoozy each day so I slept and then did the awkward jump and wake up thing in my chair.  I think the combination of Tylenol p.m. at night and a huge shot of Benadryl each morning knocked me out. 

On day two and three I had no issues with blood pressure or labored breathing; it was a very easy two days.

It was interesting to speak to the other two ladies who were also being treated for multiple sclerosis with the same medication. Before they were diagnosed, they had no idea what MS even was.

Multiple sclerosis is not new to my family.  I often think of my great aunt, Tia Elisita, my grandfather Federico's sister, who had MS. I only saw her a few times in my life but when I did she was full of smiles and sweetness. I remember her calling my dad "Peaches".  And then there's my Tia Aleida, my mom's sister, who also has MS. She is a fun and loving aunt and MS hasn't slowed her down. They are my inspiration and my reminders that life goes on, so keep on living it. 

Of course, my kids are also my daily reality check that life goes on.  On the homefront today, day three, was a cancelled day of school due to extreme cold. Luckily I had grandparents galore and our housekeeper to help out with the kids.

Then when I got home I had to make a phone call to the mother of a girl who is hosting a birthday party tomorrow. Gracie Jane is thrilled to be invited, but it is a semi-formal, boy/girl party so of course I had to speak to the parents to make sure there would be chaperones and no alcohol.

At the current stage of my disability, MS is a constant in my life, but it's not what matters most in my life. Not by a long shot. It's a PAIN IN THE BUTT, and some days very time consuming, but I'm thankful for my crazy, chaotic, LOUD family and friends to keep life
meaningful.


Year 2 of Lemtrada... DONE.

Now...gotta get these Christmas gifts wrapped somehow!  Life goes on in the best ways.  

Lemtrada Year 2: Day 1

Notes so I remember:

The day started with my daughter yelling at me because her brother got a flu shot yesterday and she didn't. (This from the kid we literally chase around the kitchen table to give her the shot each year.) My husband brought an extra flu shot home from work, my son willingly rolled up his sleeve and that was that. After convincing her to go to school and promising we'll get her flu shot ASAP, we got on the road to come to Fort Wayne. 

Two other ladies are  here getting meds alongside me. Looking at her, one looks like she walks ok. I was here with her last year, my last day and her first day. I remember she had a horrible reaction, she was so hot and we kept calling the nurse to come put fans on her. She's fine so far this year. Oh wait. Now we have one hour left and she's fading.  And she can't feel her legs. This medicine is scary. 

The other lady walks JUST LIKE I DID before I got my power chair. Her husband is here with her all day. He brought her in a wheelchair, but helps her walk to the bathroom. She told me she uses a walker at home. 

And me. I came in my power chair of course. My husband is with me and helped me in the bathroom. While in there we both yelled and I ended up sobbing. This medicine and this disease and this disabled lifestyle is scary. 

After the bathroom trip I asked him to leave for a while. We needed breathing room. The final 15 minutes of my medicine dripping into my IV caused some stinging in my hand. Seems during the bathroom fiasco we bumped the needle in the back of my hand and the meds still dripped in, but not in the vein. So I don't get to keep the port in, it had to be pulled out due to the puffy medicine just hanging out under my skin. I was told it will absorb through the tissue in my arm overnight and they'll put a new IV port in tomorrow. 

By the end of my meds, my blood pressure is high (unheard of for me) and my breathing is labored. We're blaming the steroids. (Lemtrada is infused after an hour of steroids and a huge sleeping beauty sized shot of Benadryl.) All patients stay after the medicine is done for a two hour observation period. Wish I could do a dance or a magic show to give them something fun to observe! 

The wifi here is sucky to non-existent. Luckily Netflix and Amazon both offer download-and-watch.  I'm getting caught up on Narcos and Transparent. And reading too, of course. 

I'm supposed to be drinking water like crazy, but going to the bathroom here has proven to be too stress inducing, so I'll drink tonight. 

(Water, Alina. You'll drink water tonight...) 

Can't wait to get home, hug my kids, hear the stories of their days, and GET IN BED. 

When Medicine is a Crapshoot

I was diagnosed with multiple sclerosis in September 2004, my daughter GJ was six months old.  Since then I have been on three "official" multiple sclerosis medications:

*Avonex, which was a weekly intramuscular shot with a ridiculously long needle. I gave myself that shot for seven years.

*Tecfidera, a twice daily oral pill.  In 2011 I started limping and noticing extreme leg weakness. My neurologist suggested that I try this new oral medication.  I was thrilled to stop giving myself shots, but the oral pills came with their own intense side effects.  While I was on Tecfidera, I slowly progressed in my decline in mobility.

*Lemtrada, a medicine given  through IV.  The first year is a five-day course of IV drugs, 8 am to 5 pm at the neurologist's office. I did my first round last year in early December. Next week I will begin my second round  of this medication, this year it is a three-day course. The goal of this drug is simple...  Stop disease progression.  The medicine wipes out the majority of my immune system. The thought is that as the immune system builds itself back up it will behave better, quit attacking itself.  

Stop. Getting. Worse.  I was, and sometimes still am, worried that I will be bed bound.

I did not journal or blog  last year when I started this medication. I wish I would have. I know that I was not walking well. I had my power chair at home, I got that last October,  and I was using my scooter out in public.  I was still able to transfer out of my scooter on my own, but it was very difficult. I know that my right hand was bad  and writing and typing on the computer had become impossible.  (I'm a lefty now.  Sloppy eating and even sloppier handwriting.)  I know that last year I didn't even go in for my second day of treatment because I had fallen in the night due to extreme weakness.

How do I know if it's working?  I feel like I'm worse than I was a year ago. I'm not transferring on my own at all anymore.  I need help in every aspect of my life, I just can't move on my own.  The fatigue can be crippling.

There are days when I think  that surely this is the worst it is going to get.  One year from now  I hope to be at least the same if not a little bit better than I am right now.

But on other days I wonder, what if this is good compared to where I will be in one year?

One day at a time.  I have to repeat that over and over to myself. I can handle today.

Sometimes my mind wanders and I get scared about the fact  that I literally can't live alone.  The list of things that I did independently for 40 years can go on and on and on.  I, who love to be alone and can get lost in my thoughts  for days on end, now have a caregiver with me 90% of the day.  I am simultaneously thankful and resentful of the help that I constantly get, yet consistently don't want.

Then I remind myself:  today. I can handle today.

Rio Paralympics

The opening ceremony of the Paralympics was held last night in Rio. I recorded it and have watched it, and will be watching it again with my kids. Watching the parade of athletes is beautiful. Such a wide variety of abilities; some athletes are in wheelchairs, scooters, and power chairs. Many are missing limbs. Some are little people, extremely small in stature. I watched a story of a blind swimmer. The abilities vary, but they are united by the dedication to sport.

Able-bodied Olympic athletes are amazing. The amount of time, money, and hard work they put in to their sport is mind-boggling.  They are celebrated and looked at as heroes, and rightly so.  The Paralympians?  They are the SUPERheroes.  These athletes have not only put in an amazing amount of time, money, and hard work, but by living with a disability, they have also had to deal with more than the average person.  They have dealt with doctor's appointments, which at times can seem never-ending. They have had to find, be fitted for, and learn how to use different types of equipment to help them perform activities of daily living.  Socially they have had to come to peace with the fact that, for some reason, they have ended up in a body that society doesn't consider "normal".  They are proud champions.  The Paralympics are more difficult to find on television. But I searched and I found and I will be watching. Some of it will have to be viewed on the computer through an app, but I know that it will be worth it.  GO USA!!!