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!!!

  

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.