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!!!

  

Staring at freedom!

Back in February on my blog I wrote a post titled Patience. In it I wrote about getting a minivan with a ramp and hand controls and how I assumed I would have it by June. I was off by a few months, as the official pickup day of that van was August 22. I started the process on September 1, 2015, so I can say that at least it took under a year.

Everyone is so happy for me. I am so happy for me. I am very thankful that we were able to purchase a brand-new vehicle and that Vocational  Rehabilitation was willing to pay for the modifications, which cost more than the new van. I even think that having to wait almost a year ended up being a good thing. It gave me the time to mentally prepare myself to be out in public in my power chair.

Once I started limping, then using a cane, then using my scooter and a manual wheelchair, people started staring. People stare in all different ways. There's the outright stare, the "I'm going to look at you and then look away and then think that you don't notice but then take a long stare" stare, the "pull my sunglasses down over my eyes so I can stare better" stare. I'm used to it now, and usually I blow it off or don't even notice. At times I have given a few of my own stare downs in return, and on some grumpy days I've offered to sell tickets, but mostly I blow it off.

Being in a power chair is a whole different beast. It's funny, my scooter was kind of cool looking and people would often ask about it or say how it looks very handy. No one says that about a power chair. No one says "I wish I had one of those!" I don't blame them!  Let this serve as a public service announcement. If you are over the age of 10 and see someone in a scooter, you don't need to comment on how handy it looks or how convenient it must be or how you wish you had one of those. It's not convenient. Two healthy walking legs are convenient. I am envious of your healthy legs. I don't care if they are fat or thin, hairy or smooth, blotchy, full of freckles, tan, or white as a ghost.  Don't be envious of a scooter. That's ridiculous.

After being on house arrest for 90% of the time the past eight months, being out in a power chair is wonderful. I am a social person. I like to be out among people at events watching my kids. I like to go on dates with my husband without having to worry about shoving my legs into a car. I like to be around people so much that finally it's annoying and I cherish being home alone. I will take this new freedom and enjoy it more now than I ever did when I walking.  And if you are staring at me, stare away.  Know that you are staring at a mom and wife who is enjoying life.

 

  

Badass Basset Hound

A wise old soul.

I saw the movie The Secret Life of Pets this weekend. It was entertaining and cute, and a great way to beat the heat. I'm not giving away any spoilers of this adorable movie, but I am going to talk about my favorite character.

A group of the pets get in trouble. They get in over their heads and they're unsure of what to do and how to fix this problem. After trying to solve it themselves, they realize they need to go to Pops. In my mind, Pops was going to be a pit bull or a great Dane or some type of big amazing dog. But to my delight he was a basset hound. Of course my family has a fondness for basset hounds because we have our own darling Mildred Blue. But this basset hound is even better because he is in a doggie wheelchair.

Over the past two or three years I have joked with my friends that now that I am 40ish and in a power wheelchair, I am wise. My 20s were fine, but full of hard work and figuring things out in life. My 30s were awesome. I had my kids, I had fun with my friends, I was in the groove and enjoying life. Now in my 40s I am finding a new groove. And with this groove comes time for reflection and intentional wisdom. Still so far from perfect in so many ways, but slowly realizing that perfection is whatever I choose it to be.

Pops is great. He has helpers, as those of us in wheelchairs do. But he is still in charge, as I will feel that I am until my dying day. At first, being in charge from a wheelchair seems like an impossibility. But as my family quickly has learned, it is absolutely possible!

Pops, in his doggie wheelchair, makes his way around the city and the apartment complex with gusto and without hesitation. Obviously it is not how he always got around, but he has adjusted and makes his way without a stumble. I have stumbled. Oh my, how many times I have stumbled,and relied on help from my family, friends, and often times the kindness of strangers. The stumbling used to cause instant tears and frustration. Then it changed and began to cause reflection and problem solving and thoughts of, "How can I do that better next time?"  Now when I stumble it can still cause all of those things, but often it also involves laughter.  Laughter helps overcome the awkwardness, it takes away pity, and it reminds me that I can get through this.

Pops? He's also kind of grumpy. And I like that about him. Wheelchair or not, I think both Pops and I have always tended to be grumpy. Lovable yes, but also wise and grumpy. Maybe in my next life I'll be a basset hound.

Please leave me alone.

Accessible Warsaw: Warsaw Women's Center

My pick? Dr. Ryser.  She's wonderful.

 

It was time for that yearly visit to the "Women's Center". Except for that I have been a bad patient and haven't been for four years. (I've been to countless other doctors, but the gyno just wasn't the priority at this time in my life.) I was interested to see how this experience would go with my new limited mobility issues.

My expectations were high because this is a medical facility. The parking was excellent, well marked with ample room to get out of my car and easily head up the ramp to the front door.



Seamless parking lot to sidewalk transition.

 

The Women's Center continued the Warsaw tradition of not having a button to open the door easily. That was a disappointment and something I hope will change in the future.

Once I was in the building it was quite easy to get to where I needed to go. When things weren't as easy as they once were, for example transitioning out of my scooter and onto the bed in the exam room, the nurses and doctor couldn't have been more accommodating.

I was due for the dreaded mammogram. I like that at Warsaw Women's Center you can have the mammogram done right there in the building instead of having to go over to the hospital. They have a wheelchair in the building that I was able to use which made the mammogram easier. I was able to sit in the wheelchair, which has removable arms, and we could do the procedure from there.



Nice ramp and sidewalk to the door, but no door entry button.



 

Good accessibility and great accommodation, friendly nurses and Dr. Ryser is a pleasure. For being a doctor's appointment, it was a good experience!




Warsaw Women's Center = **** (four out of five stars on my accessibility scale)
+ good parking
+ excellent ramp and sidewalk leading to the front door
+ office is all one level, easy to get around on a scooter
+ a wheelchair is available for patients who need one
+ the staff is friendly, welcoming, and accommodating
- no button/automatic door


This is Impossible, but Here I am

The other night I took the kids to see Beauty and the Beast on stage. Of course it was a hit and we all loved it. There was one (in the grand scheme of the show) insignificant little part that stuck with me.
The first time Belle goes to her bedroom in the Enchanted Castle she meets furniture that talks. The bureau that holds all the clothes offers to get her dressed in a beautiful gown.  But Belle isn't able to focus on anything other than the fact that the furniture is talking to her.

Belle says to the bureau, "This… Is impossible."

The bureau says, "Yes it is. But. Here we are!"

And then the play moves on. Just like that. It's impossible, but it's true, and here we are, and life goes on.

Soon after this exchange, the cast breaks into the wonderful dinner party for Belle where they sing and dance to "Be Our Guest".  They are all furniture. Something they never dreamed of happening to them. But they are still singing and dancing.

Such wisdom from a Disney musical.

Accessible Warsaw: Rockstar Nails

I have heard good things about Rockstar Nails so I decided to give it a try. OP Nails is closer to my house and I'm more familiar with the people, but I wanted to see if there are other accessible nail salons in Warsaw.

Upon pulling into the parking lot I could see that they had no ramp near their door. I've grown accustomed to searching parking lots for ramps in the sidewalk, and I'm always disappointed when a ramp is not anywhere near the store I'm visiting. This was the case at Rockstar Nails. In fact, I'm not even sure they truly have a handicap parking spot. I did find an area with blue paint at the end of the sidewalk near a ramp, but there was no sign indicating that it was a special parking spot.

I guess this is a handicap parking sign?

Once I parked I saw that the sidewalk does end in a ramp.  It felt very much like an afterthought. I am glad it was there so I could get into the store.

Of course there was no button to automatically open the doors, something that is majorly lacking in so many Warsaw stores.

Going into Rockstar Nails on a scooter was very interesting. The people working there seemed as though they had never seen a person on a scooter before.  Their pedicure chairs do not have arms that completely slide out of the way, so transferring from my scooter to a chair was more challenging than it needed to be. Luckily my friend Julie was there to help me, the ladies who were working were quick to suggest I just stay on my scooter.

I did get a pedicure and manicure and they were both very well done. Rockstar Nails has a huge assortment of gel polish colors, more than I've seen at other stores.

Rockstar Nails = ***(3 out of 5 stars on my accessibility scale)
+ Handicap parking, sort of, needs much better signage
+ There is a ramp, placement could be better
+ Shop is all one level
- No button/automatic door
- Accessibility is definitely an afterthought

Accessible Warsaw: T.J. Maxx

TJ Maxx opened here in Warsaw a few years ago. It was exciting news for our town that lacks some of the big chain stores.  As a newer store here in town, my expectations for T.J. Maxx to be accessible were high.  Luckily, T.J. Maxx did not disappoint.

This is an easy review to write! T.J. Maxx has excellent handicap parking right in front of the store and a ramp that leads to the doors. The best part is that their doors are automatic. They open for you, whether you're walking or on wheels. The store is all one level and very easy to get around in a scooter.  Way to go T.J. Maxx!  I've always liked you for your homegoods, and now I like you even more for your wonderful accessibility.

T.J. Maxx = ***** (5 out of 5 stars on my accessibility scale)
+ handicap parking spot right up front
+ well-maintained, wide ramp from street to store entrance
+ entire store is all one level
+ AUTOMATIC DOORS!!!

Truly a Minority

I am eager to do a new Accessible Warsaw post, I have many pictures on my phone waiting to be dumped onto the blog, but my phone got knocked into the (thankfully clean) toilet yesterday. I broke my rule of no phone in the bathroom. It was sitting on the sink, safely away from the toilet, but my awkward dance of getting off my power chair and onto the toilet included the "knock the phone into the toilet move" that I hope to never perform again.  The phone was insured and a new one is arriving today.

So instead of writing about the accessibility of my town, I am going to write about being a part of the largest minority in our country, the group of people with disabilities.  I'm new to the group and frankly, not thrilled to be a part of it. In all of the television shows I watch, I wonder how the storyline would be different if one of the main characters was confined to a power chair. Olivia Pope in Scandal? Gloria or Claire in Modern Family?  Khaleesi in Game of Thrones?  Even when I was able-bodied I didn't have a ton in common with these characters, but I did have the common experience of being able to walk.

Yesterday I was watching a show on Netflix called Happy Valley. I paused the first episode 20 minutes in and watched a small 30 second segment over and over.  A husband was talking to his wife as she sat on the edge of the bed in her pajamas. As he was chatting, he was taking off her socks. Without a pause in the conversation, he stood up, then bent over as she wrapped her arms around his neck, and he helped her put her legs into bed.  I, as the viewer, was never told why the wife needs assistance removing her socks and getting into bed. It is simply a part of their life, not explained at all in this first episode. Words fail me when I try to describe the feeling I had watching that.  It was surreal. Seeing characters on a television show acting out my reality. It was powerful and made me feel "normal".

I am an adult who lived a good 38 years with a fully able body. And I still was touched by seeing this on a television show. Imagine children with disabilities. How empowering would it be for them to see their reality portrayed as a normal part of life on television, in movies, and advertisements.  Our culture has a long way to go to include people with disabilities.

Accessible Warsaw: Recovery Lounge

Love me, love my book club. My book club has been with me throughout my whole journey into disability. We meet every month. They saw me when I could walk, when I began to limp, when I used a cane, and now when I am in my scooter. What's awesome is they treat me the same as they always have.  Sure, they help me physically in ways that I never needed previously, but I still get teased, I get listened to when I pull an intelligent thought together, if we're doing a gift exchange and I get the good gift, no one hesitates to steal it away and make me open the next, questionable gift.  We are six women who love to read and discuss books, but our friendship is much more than that, and I am so grateful.

Recovery Lounge is a new bar in Warsaw. It is where Bennigan's used to be, in the Wyndham Garden Hotel. We usually meet in each other's homes, but last week my book club decided to meet at Recovery Lounge so we could check it out.  (Get it? Like checking out a book? Okay. I'm sorry.)

The disabled parking spot was right by the front door. There was plenty of room for me to get on my scooter and get right to the door.

Nice and roomy.

There was no ramp or sidewalk, I like how the street led right to the door. The door had handles, but no button I could push to open the door on my own. My book club friends of course held the door open for me. They even held both, which makes me feel like royalty!

Thanks ladies!

Recovery Lounge is very pretty. The atmosphere is relaxing and inviting. I was glad to see that it is all one level, very easy for me to get around. There are three seating options. Tall chairs at the bar, clusters of barrel chairs, and couches. We chose a couch and I pulled up a barrel chair.

Classy place!

We ordered drinks, which were delicious, and also ordered a few things off of the menu from the adjoining Italian restaurant. We had a fun night, a great discussion, and enjoyed the sophisticated atmosphere. The only thing lacking accessibility wise, was a handicap button entrance, or an automatic door.

Book Club!

Of course, knowing these ladies, we can make anyplace accessible. They'll push, lift, shove, and pull me wherever I need to go!

Recovery lounge =**** (four out of five stars on my accessibility scale)

+ handicap parking spot right up front

+ no ramp or sidewalk needed, door is the same level as the street

+ entire bar is all one level

+ variety of seating options, not only tall bar chairs

- no button/automatic door

Thought pod: The Party

It's not expected. Stand up, my mind says. Mingle. Dance. My heart, my body, wants to do party things.

In the chair I remain. Observing. Witnessing. Judging. Yearning.

A few gather, conversation. Catching up, laughter.

Eventually I'm alone again. Nervous hands check my phone. Alone, in the kitchen corner. I search for a pair of familiar eyes, none to be found.

This isn't me! I want to scream. This isn't me! This. Isn't. Me.

But it is.

I'm ready to go.

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Two weeks ago I went to my cousin's birthday party in Texas.  It was a whirlwind trip, travel was delayed on every leg, we were in Texas for a total of 28 hours. I would do it again in a heartbeat. It was worth it, it was way too short, and there's not much I wouldn't do for my cousin Jennifer.

I realized that it was the first time in a long time that I was with such a large group of people that I don't know.  Of course there were people I do know very well there, family members, my husband, my brother, my aunt who also is in a wheelchair due to multiple sclerosis.  A few of my cousin's close friends who I have met on previous trips.  But my life has changed so much since I had last been in Texas.

I wrote the above poem, or what I'm calling a thought pod, on the flight home. I had to get those feelings out of my brain. It gives those feelings validation.  It's difficult being stuck in a chair when I want to dance. I want to say something flowery here. Something cerebral or witty to prove "I got this". But sometimes things just suck.

Most days they don't.

Accessible Warsaw: The Tiger Den

Warsaw High School's gym is affectionately called The Tiger Den. Each March I attend the Community Quiz Bowl in The Tiger Den. I don't go as a quiz team participant, I go to cheer on the best team on the floor, Book Club Husbands.

Four years ago, the first year I went to the Quiz Bowl, I walked in. The next two years I walked with a cane.  Last year I was out of town during the event. This year, of course, I went on my scooter. I was interested to see if the event would be accessible. In the past years, the spectators sat in bleachers on the upstairs level, having to climb stairs to get up there. I am sure there is an elevator somewhere in the high school, but I don't know of one specifically right there in The Tiger Den area.

Parking for The Tiger Den is around the back of the high school. Perhaps there are better handicap parking spaces in front of the school, but the pickings were slim around back. I was happy to see that near the handicap parking spot the street is level with the sidewalk.

I was alarmed, however, at how far away from the entrance the parking spot was.  It was a beautiful evening and the weather was nice, but I would hate to have had to make that long ride in snow or rain.

All of those cars are parked within a 15 second walk to the entrance!

When I got to the door to enter the building, there was no handicap button to push to easily open the door. The kind people with me opened the door, but it would be so nice if there was a button I could push so I could go in independently.

The spectating area has been moved, it is now on the floor level in the bleachers. That was nice and that meant that there was no elevator needed. I knew that we would be sitting in bleachers and I cannot get up into a bleacher, so I had my friend who was going early try to find a chair that I could sit in. She had put a reserved sign on a chair, so I was able to sit right next to the bleachers where all my friends were sitting.

I do pause and wonder what would happen if I went to a packed basketball game at The Tiger Den. Do they have an area for seating for people with disabilities? I really have no idea; I'm sure that if I called in advance it could be arranged. If I were to go to a basketball game however, I certainly wouldn't wonder if there were restrooms available for the crowd. That is just an expectation that is met. It would be wonderful if seating for people with disabilities was also a normal expectation that is met.

Quiz bowl 2016 was a fun evening.  Book Club Husbands did well, they are an intelligent group of guys, but no trophies were won this year. I will give my rating for The Tiger Den, but it is just the gymnasium part of the high school. To truly give a rating, I will need to visit the entire high school.

Warsaw High School: The Tiger Den =***(three out of five stars for accessibility)
+ handicap parking spot was the same level as the sidewalk
+ bleacher option on the main floor, not only on the upstairs level
+ chairs are available, not only bleacher seating
- handicap parking much too far away from the entrance
- no button/automatic door
- would that chair have been available had I not had a friend save it for me?

Spouse as caregiver... A relationship twist

Chris and I have been married for 20 years. I was 15 when we went on our first date. In August 1995 I turned 21, and two days later I got married. I don't remember our wedding vows word for word, but I know they were pretty traditional; I'm sure they included the "in sickness and in health" line.

When we got married, we were the picture of health. We were both fit, tan, intelligent, without a care in the world. Yet we made that promise to each other. To love, honor, and support each other even in sickness. But do we have to like each other?

There should be a clause in the marriage vow, an addendum maybe? Something that warns that a life-changing chronic illness can be included in the simple word "sickness". As young twenty-somethings, did Chris and I really stop and think what sickness could include? I'm pretty sure I was meaning a bad cold, possibly the flu.

I am positive I wasn't thinking multiple sclerosis. Definitely not a multiple sclerosis that would rob me of the use of my legs and slowly take away the use of my right arm and hand. A chronic illness that leaves me, someone who has been fiercely independent her whole life, physically and emotionally dependent in a way that is humbling and, quite frankly, annoying.

But that's me. This is my body, my illness, my issue. Except for that it's not. This is an illness that affects the whole family. I have become a burden.  I looked up synonyms for burden and found: problem, obligation, worry, pill, and dead weight.  I have become dead weight.  Ha.  That one made me laugh.

Fortunately I married a man who seems to enjoy dead weight. He doesn't enjoy being a caregiver for me. We have moved into these roles reluctantly. But he does seem to like me. He will do what needs to be done. It won't be as gently as some, it may be hurried and messy, but he will do what needs to be done. Why would you do that for a person unless you liked her?  Over and over, day in and day out. I can depend on him.  And the best part? The true secret to keeping a marriage intact? He keeps me laughing the entire time he's shoving me into a car,  plopping my legs into bed, lifting me up out of a chair.  He can't help it.  He's a silly goof ball and even when I want to strangle him... he makes me laugh.

A better wedding vow would be "to love you, to try to like you, and to always make you laugh".

Accessible Warsaw: Creighton's Crazy Egg Cafe

Creighton's Crazy Egg Cafe opened in Warsaw about six months ago.  I had heard rave reviews and was anxious to see for myself.  I was prepared for the coffee and food to be good, but....is it accessible?

I was happy to find "eggs"cellent (ugh... couldn't help myself) handicapped parking and a ramp right by the front door.  The ramp twirls around a silo; I love that it is part of the farm theme.  How cute!

So handy to have the ramp right by the parking spot! 

                                                                                 

Up the ramp I go! Functional and cute, a win!

When I arrived at the front doors, I was disappointed to see that there was no handicapped entry button. Once again I had a good friend with me and she opened the door of course, but I wish more restaurants and stores would put in these buttons to foster independence for all of us.

I got in the door and entered a cozy gathering space. We had plans to go for breakfast so we were heading to the tables, but this little nook would be a nice place to meet with friends and have coffee. There are no steps so it is completely accessible. I would be able to sit in my scooter or transfer out of it onto a comfortable chair.

Please join me for coffee!


With no wait, we went right to our table.  It is not always easy for me to transfer off of my scooter. There are times when the muscles in my legs tense up and are stick straight.  Luckily my friend Julie is not scared to get in there and bend my legs and help me as much as possible. There are times when it is easier than others, but there has never been a time when I haven't made it off my scooter to sit in a chair. Hopefully within the next six months I will be able to use my power chair and that part of the scenario will no longer be an issue. Once again, there were no steps at all inside the café so it was very easy for me to maneuver.

This picture didn't turn out that well, but it does show that they have low and high tables. I am not able to sit up in a tall chair, so I am glad there are options.

After a delicious breakfast, we headed to the restroom to see if it was as accessible as the rest of the café. I was very happy with what I found.

Wide and easy for a scooter to fit through!

A restroom can never have too many grab bars!

Creighton's Crazy Egg Café is a fun place to grab breakfast and coffee! I am positive I will be going back soon.

Creighton's Crazy Egg Café =**** (four out of five stars on my accessibility scale)
+ wonderful handicap parking
+ fun ramp that matches the theme and is useful
+ everything is on one level, easy to get around in a scooter
+ accessible bathrooms
- no button/automatic door

View from the Pool Deck

Being a swim mom is one of my favorite roles.  Swim practice, meets, suits, caps, goggles, towels, and, most importantly, the swimmers.  I love watching GJ swim, and hope B will soon join the fun.  I will conserve energy all week to be able to get to the meets on the weekends!  Getting there takes a lot of work, GJ helps me into and out of the car.  She then helps me get set up in the spectator area before she heads down for warm ups.  Lately it has become even more difficult for me to get around and I'm eternally grateful to my mom, Chris, Kristle, Tim, and Janet for their help at swim meets this year!

Some pools have designated handicapped seating, which is the best.  I set up my chair and that's where GJ knows to find me for the rest of the meet!  Older pools often times don't have elevators.  No elevator means I have to sit on the deck.  That may sound fun, but it's not ideal.  I'm separated from other parents.  I may be surrounded by swimmers from another team.  It's usually the worst view in the house.  Swimming is a sport best observed from an elevation so all the lanes can be seen and the entire scoreboard can be read.

At the Concord High School pool in Elkhart. Hope my swimmer is in the lanes I can see!

At a meet recently I kept looking at the stairs that lead up to the spectator area.  I thought about the disconnect I feel between my mind and my body.  Sitting, watching, cheering, chatting.  I feel so normal.  Sometimes I let my mind pretend that my body is able.  Able to walk up those steps and plop right down on a seat.  Able to saunter out to my car in the parking lot after the meet.  But then the end of the meet comes and I wait for GJ to come help me.  Help steady me as I transfer from my chair to my scooter. And again from my scooter to the car.

But one day.... Maybe one day I'll be able to walk again.  Even if it's with a cane.  And I'll slowly climb those stairs and sit in any bleacher seat available.  And GJ may have a tougher time finding me in the crowd, but eventually she will.  And we'll smile, blow kisses, and I'll remind her to KICK into and out of her turns!

I have a feeling I'll get up those stairs again one day.

The great thing is no matter if I'm walking or riding my scooter, these two love me!  I'm confident of that!  

Accessible Warsaw: OP Nails

Mani/pedi?  Sure!  I enjoy having painted nails, especially now with gel polish that lasts a lot longer on my nails than "regular" polish.

Getting in to the nail salon is an interesting task, one that I'm currently not able to do without help. Luckily my friend Julie wanted to get her nails done too, and is not intimidated by a friend on a scooter!  So we met at OP Nails, which was a safe choice because I already knew it was accessible.

OP Nails is in a strip mall with a small parking lot.  It does have a handicapped parking space.  I need extra room by the driver's side door so that my scooter can be brought right up next to me.   Julie met me in the parking lot.  This not being her first time helping me, she came right over to the back of my car and lifted out my scooter.  She brought it over to my open door and, very thoughtfully, offered to kick away the slushy snow.

Trying to make the area less slippery!

After the area was less slushy, Julie brought my scooter right next to the door.  She helped me get my legs out of the car and positioned so I hopefully wouldn't fall as I transferred from the car to the scooter.  

Hop on!

There are two ramps up to the sidewalk in this parking lot.  One is right in front of OP Nails, but often many cars are parked in front of it making it unusable.  The other ramp was wide open, but it's awkward to use because it ramps up to a very narrow sidewalk.  Julie stood next to me, but I feel like if I would have tipped, I would have taken her down with me!

I appreciate the blue lines in front of the ramp.

OP Nails does not have a handicapped door button opener.  Thumbs down, OP!  I've been told that the ADA (Americans with Disabilities Act) does not mandate those buttons, only that doors have handles.  I'm sure that would quickly change if, even for just one day, everyone had to get around in a wheelchair or scooter!  Thankfully, Julie very politely held the door open for me. 

So polite! 

I had not gotten a pedicure since I've been in my scooter.  It's difficult to take off my shoes and socks and then, of course, put them back on before going home.  We both wanted pretty toes though, so Julie offered to help me with shoes, socks, and getting into the pedicure chair.  The man at OP Nails, however, just kept helping me every step of the way.  (I don't know his name, I believe he is the owner?  He's Vietnamese and there is a language barrier.)  Julie helped too, but he took over and didn't seem put off at all by helping me.  He was patient when my stubborn leg wouldn't bend.  He helped me get on my scooter to go over to the manicure area.  Before I knew it, he was putting my socks and shoes back on for me.  

OP Nails = ****  (4 out of 5 stars on my accessibility scale)

+ Handicapped parking and two ramps, but one is often blocked.

+ Polite, helpful staff.

+ Shop is all one level, easy to get around in a scooter.

- No button/automatic door.

(Julie =  5 out of 5 on my friendship scale!)

Patience

I hope in a year from now I'll look back on Sept '15 through June '16 as "That time I stayed home.  A lot."

I drive with hand controls.  I took six hours of Driver's Ed and got a restricted driver's license.  My right leg is my bad leg (although my left leg isn't moving so well either these days), so driving with hand controls is a relief, not a challenge.  I don't ever accidentally try to use my foot because my foot won't move!

Now that my right arm and hand are very weak, I am working on getting "reduced effort steering" on my car.  I'm going through Vocational Rehabilitation, which is a government agency that helps people with disabilities stay working.  They paid for my hand controls.  They'll pay for reduced effort steering.  They'll pay to get a mini-van converted with a ramp.  They came to my office and assessed my work environment and concluded I could use a desk that will rise and lower (to fit my power chair), a different type of mouse, a smaller keyboard (to ease one-handed typing), and Dragon Naturally Speaking software, which will allow me to verbally command my computer and ease hand fatigue.  And Voc Rehab ordered and paid for all the items.  It is a wonderful resource, one that I'm so thankful for.  We have incredible expenses due to MS, so to get these things paid for is great!

BUT.  It takes soooooo long.  I started the hand control process in May 2013 and they were finally placed in my car on Dec. 24, 2013.

I started the office modification and reduced effort steering/mini-van process on Sept. 1, 2015.  And I'm still waiting!! The office supplies order has been placed, I was told today.  Until we get the mini-van with a ramp figured out, I can't go anywhere alone.  Luckily I have family and awesome friends who have learned how to help me get in the car and how to assemble my scooter. But I sure do miss running to the store on my own every now and then.  I miss going to the library and spending as long as I want looking for the perfect books, no one waiting on me.    Walking from my house to my car, maybe 20 steps, is so physically draining that most times I prefer to stay home!

A year from now... by then I hope to be able to zoom my chair right into the van, drive, and do what I want!  I'm wrapping my brain around the idea of being out and about in my hulk of a power chair.  I hated using a cane, but got used to it.  Dreaded taking my scooter out in public, but now have even been on the (insane) sidewalks of NYC with it.  So I'll be in a power chair.  Ok, not the image of myself I dream of portraying.  But I can't stay home the rest of my life! It's still me.  Just in a big chair that drives.  At least it's pink.

My Truth: A Life Reduced

I'm living a life reduced.  Not in every way, because I am still alive and breathing.  But in so many ways.  I'm typing this using only my left hand because my right hand is too weak to type.  Those muscles and nerves don't listen to my brain anymore.  I can no longer walk.  I live on only the main floor of my home.  All my needs are met on this level of the house.  I can't, however get upstairs to my kids' bedrooms.  There is a special bond that comes from being in your child's room, sitting on his or her bed, peeking in at their slumber.  I miss that. 

I'm unable to go down to our beautiful basement that we finished 5 years ago.  I miss the quiet privacy of working in the gorgeous office down there.  My office is now in my son's playroom. 

I struggle getting on and off the toilet on my own.  I haven't showered independently in over a year.  I require help getting my legs up into bed.  If I don't have someone help me get dressed, I can do it alone, but it will take 45 minutes.  I don't prepare meals for my family.  I don't do dishes, I don't do the laundry.  Multiple Sclerosis has taken away the use of my legs and of my right arm and hand.  There are so many things I don't do anymore.

But I'm still here.  And there is much I am able to do. I'm emotionally available to my kids.  I'm home 95% of the week.  They are secure in the knowledge that when they're home, Mom's home.  I do my job.  I take care of accounts payable for three businesses and our home and run payroll for two businesses.  MS hasn't affected my cognition, I'm still pretty bright. :)

My idea for a blog is to write about the accessibility of my town.  Once I've taken the effort to get dressed, get in the car and drive somewhere (using hand controls), can I get in?  That's one thing I plan to focus on with my writing.  But... I've already discovered with this first entry that I'm also, apparently, using it as a place to show my reality.  I'm guilty of hiding my truth behind a lot of smiles and "I'm ok"s.  But here it is.  Warts and all.