Northera Here I Come!

img_4145I had my 3 month checkup with Dr. Keith Schluterman, my neurologist in Conway, Arkansas on May 25th.  Since my severe orthostatic hypotension is still uncontrolled on Mestinon and Midodrine, he told me he wanted to add Northera, or Droxidopa.  Dr. Schluterman has been a Godsend to me so far.  I have been battling fainting spells since I was 14 but didn’t get a diagnosis until age 27.  He is the FIRST neurologist to put me on Midodrine!  I wasted over 7 years with a different neurologist whose approach to dysautonomia was “We’re only putting a Band-Aid on something that cannot be healed, so what is the point?”  She was the specialist, so I believed her.

After she dropped me as a patient because I suppose she was tired of putting Band-Aids on my progressing “Boo Boos,” I got another neurologist who only saw me as a rare specimen.  She cared about the “Why I have Dysautonomia” more than “How can I make your life better.”  When I didn’t want to go through expensive repetitive testing over and over for her research at my age, she told me not to come back until I was ready to do so.  Excuse me if I didn’t want to be treated like a guinea pig.  Then she left town not long after that happened.  I’m in a small rural county in Arkansas.  Specialists come and go.  They don’t hang around long.  If you have something strange and unusual, you are screwed.  That neurologist did not offer me ONE dysautonomia medication or help at all.

So I get excited when a doctor actually WANTS to try medications I’ve only been able to read about in dysautonomia forums and on research websites like Mayo and Vanderbilt. Dr. Schluterman was up front with me about the costs.  Northera is very expensive.  Without insurance, Northera costs patients between $60,000-$80,000 a year.  I do not understand why medications are so expensive.  Having fought orthostatic hypotension for so long, I heard of Droxidopa years ago when it was only available overseas. So I know it took a lot of research and studies to get the drug FDA approved.  My doctor filled out paperwork from Northera to get me approved for the drug.  I left the office thinking even if my insurance approved this medication, there was NO way we could afford the copay!

I sent my daughter, mom, and brother a text to tell them about my doctor visit.  I told them to pray.  When my dad called me later in the day, I told him to pray.

Last Friday, my phone rang.  It is from the Northera Pharmaceutical Company.  They asked me a few questions about my insurance.  They told me my copay would be $3,000!  I told the representative there was no way my family could afford the copay.  She then informed me of a program  for which I qualified.  I would receive a 30 day supply for free.  After that, I would only have to pay $10 a month for my prescription.  I was in complete shock.

I rarely sing a pharmaceutical company’s praises, but I am SO thankful for this program!  I have some hope!  I know I will never run a race.  I will never jump on a trampoline or shop for 8 hours straight.  I will never again ride roller coasters all day long in the hot Arkansas sunshine.  I may never again feel the adrenaline coursing through my body as I jump from a high rocky cliff into one of our beautiful blue lakes.

However, I have hope Northera will give me some relief, a better quality of life.  SOME improvement in my daily living is better than nothing.  Since I have met Dr. Schluterman, he has done more for me than both of my other neurologists ever did.  I’ve only seen him a few times so far.  I hate that I wasted so many years with an uncaring doctor unwilling to treat me because I can’t be “healed.”

Just because we chronic patients cannot be healed does not mean we do not deserve treatment.  I know doctors go into their profession to heal people.  I went into teaching to teach.  Sometimes I would get a severely disabled student in 6th grade that could never learn past the 2nd grade level.  Did I throw that student out of my classroom?  No.  I taught that student on their level.  Healing comes in different forms.  I am being healed by a doctor giving me the treatment I deserved and had a right to all along.

Never give up hope.

 

 

 

To Love, Honor, and Help Load My Wheelchair

“Honey, are you ashamed of me?”

I remember the puzzled look on my husband’s face the first time I asked him that question. It was around 2008 when I had just received a prescription for my first mobility device: a scooter.

I was in my early 30’s. He was in his early 40’s. This was NOT how I pictured my life. I was a teacher driving a cute sporty black car dealing with my “weird” fainting issue while keeping my arrhythmia and heart valve issues in check. I was eating healthy. I was doing everything right. I was exhausted all the time, but it was the norm for me. I was still able to be Mom and Wife and Teacher.

Then in walks Gastroparesis into our lives, and suddenly progression of some disease was a REAL thing.

My husband took me by the hand and swore to me that day he was NOT ashamed of me. He couldn’t understand how I would even think something like that about him. I tried to make him understand it wasn’t about him. It was about me.

With every single mobility device added over the years, a little piece of my dignity took a beating. The rational part of my mind knew I should NOT be feeling that way, but my heart and soul were hurting. I was in the grieving stage of my illness for a very long time. I grieved the loss of my career, the loss of my identity which I’d sadly wrapped up in my career, the loss of my purpose in life, the loss of what I considered my self worth, the loss of me. My already low self esteem was in tatters.

I truly went through all stages of grief when I lost my career to my illness in November of 2013.

*Dealing with a disability at any age is not easy. There is absolutely nothing wrong with admitting you’ve struggled with difficulties on your journey. I love positivity as much as the next person. Let’s be real for a minute though. Chronic illness can be ugly, miserable, devastating, painful, debilitating, financially burdening, and cause unbelievable stress. Sometimes it’s good to vocalize or write about what you’ve overcome to help someone else going through the same crisis.*

My husband is now 52. I’ll be 42 in a few weeks. I am now in the Acceptance Stage of Grief. While my physical body is worse than it’s ever been, I am happy. I accept that I am incurable without a miracle. I accept myself as a disabled retired teacher who is now a housewife. I accept that I may never be able to drive a vehicle again, and if I cannot, I WILL be okay. I accept that while my tribe and my circle shrank to very few, I am STILL loved.

Not too long ago, I couldn’t help myself. I asked the question again. We were getting ready for my weekly outing. I was struggling to put on compression stockings, and he was about to load my power chair into the truck.

“Honey, are you ashamed of me?”

He took me into his arms, told me I was as beautiful as always and he’d never be ashamed of me.

My Phoebe

Strolling through the crowded flea market, on a mission to find a new love,

my eyes darted in all directions, seeking but not finding, the Black and Tan beauty my heart yearned for desperately.

Turning a corner, I glimpsed three crates with wiggling crimson pups.

Disheartened, I continued walking but heard a yip that made me turn around. I looked straight into the melted chocolate eyes of a tiny little soul begging for attention.

My feet moved before my mind told them to do so. I asked the woman if I could hold the tiny red pup, and she said sure.

A dachshund no bigger than the palm of my hand immediately climbed my chest and burrowed into my hair while giving me kisses. I fell in love. My mourning heart from having lost our other dachshund in 2015 felt a little lighter. It didn’t matter the cost for adoption. This pup picked me.

She has been by my side ever since.

Phoebe is my companion. She is a therapy dog without the formal training. When I am having a really bad pain day, Phoebe knows it. She stays glued to me all day long. She has been a great help for my loneliness and depression. She makes me smile and laugh every single day.

Fighting The Heat

I missed my weekly wanderings this weekend. Today, the heat index got up to 101 with the humidity. I have heat intolerance and cannot deal with the heat at all. We did get up early enough to walk around the yard for my physical therapy. We saw two snakes: a king snake and a hog nose snake, also called a spreading adder. Neither snake is venomous. The king snake was trying to trick the hog nose snake by shaking its tail like a rattler! We left them alone, although the king snake had to be persuaded not to follow us with a kind reminder from my husband. I think it was irritated we interrupted its breakfast. Interesting physical therapy session to say the least!

So, my husband and I are going to have to figure out how to get me out of the house this summer. We may have to go buy groceries in the middle of the night when it has cooled down to a more manageable 80 degrees. We may have to set the alarm clock and go before the sun rises…although my fibromyalgia and arthritis would HATE that schedule.

Trying to navigate life with multiple chronic illnesses is a never ending chore. I’m thankful for the warmer weather because my joints and fibromyalgia won’t hurt AS much. They still hurt but cold months are awful.

The month of April might as well be renamed Migraine Month in this house.

So, summertime DOES have some advantages.

Unfortunately, I need to stay in the AC, stay wet, or stay home to make it through Arkansas summers. Simply going from the vehicle into a store can cause me to become very symptomatic.

I’m also STILL trying to figure out how to wear compression stockings without having a heat stroke after all these years living with dysautonomia.

Swelling Belly

I woke up yesterday my normal size. By the time I was sitting in the truck heading for my doctor’s appointment, I could feel the Velcro on my abdominal binder start to loosen.

My belly was growing.

I could hear growls, grumbles, and flops like an alien being was begging to spring free.

The claws of Gastroparesis started shredding my insides, reminding me of those delicious Mother’s Day treats I ate while pretending I had a normal digestive tract.

“Go to the ER if your stomach doesn’t calm down in 24 hours,” said my doctor.

I couldn’t sleep last night because of my swelling belly.

It just would not stop.

Today, I wait impatiently. Hoping and praying for some relief…Mad at myself at eating something NOT approved for the step 2 gastroparesis diet…praying for a curing for us all.

Cappuccino with a Side of Calm

I ran across a lovely quote on Pinterest this morning as I was sipping my cappuccino.

The words are beautiful. The message strikes to the core of my very soul. I so wish to embrace everything spoken in this quote.

However, I have multiple chronic illnesses. Those illnesses led to anxiety and depression. I am not simply “disheartened” by the uncertainty of life. I am disheartened by the uncertainty of whether or not I will stay conscious the entire day.

Yet, I WANT to embrace the serenity in this inspirational quote. I want to simply “decide” to sit down and enjoy the ride.

I don’t get to “decide.” I am not the one in control. My body decides for me. Listening to my body and being smart about my day to day decisions are helping me.

Pushing myself until I fainted and collapsed because I listened to the “Just be positive” and “work through it” messages was a dangerous and stupid way to live.

So, if you’re not battling a chronic illness of any kind including a mental illness, the above quote may be for you. It’s a great one! Why worry about things we can’t change? Relax. Go with the flow. I’ve heard a lot of sayings.

They don’t work to well for me now.

If I go with the flow, someone please be downstream with a rope to drag my drowning butt to the riverbank. 😜

Have a great weekend! If you’re a mother, Happy Mother’s Day!

In Need of Support After I Wiggle into These Hose

Have you ever had to wear compression support hose or compression stockings after a surgery? Do you have an illness that requires you to wear them on a daily basis? If so, you know those suckers are not easy to put on if you have ANY type of weakness in your upper body.

Add a ruptured disk compressing a root nerve to the mix, and it’s just an absolutely good time! Yes, I’m being sarcastic.

This morning, I thought I was going to have to call our volunteer first responders after dragging and pulling on my support hose.

I woke up knowing it was going to be a rough day when I couldn’t quite feel my hands. Sure enough, they were swollen. My normally slim fingers looked like fat sausages, and I could barely text my husband at work to let him know I did survive another night.

After flexing my leg muscles to try and get some blood flowing to my brain, I rose up slowly, grabbed my rollator, and started the daily routine of “suiting up.” This consists of compressing everything!

Let me tell you, it’s not easy putting on support hose when your fingers feel like they should belong to The Incredible Hulk.

I’m not sure how the rest of you put on compression stockings, but I sit on the side of the bed to get them over my feet. Then I lie down and take a break. Otherwise I’m going to pass out. Remember I have this weird thing called dysautonomia.

As I’m lying there this morning, Phoebe the Dachshund starts licking me in the face. Great. I forgot to kick her out of the bedroom.

I have compression hose down around my ankles.

My back is aching.

There’s a dog licking my face.

My Incredible Hulk hands are numb again.

My mom and brother are coming for a visit in a few hours.

Can I just call First Responders and ask for help? It’s a small community. I know most of them. I wonder if this qualifies as an emergency? “Hey so-and-so! I’m about to lose my mind up in here! Need a little help putting on these hose! I taught your kid back in the day.”

Then it dawned on me I probably didn’t want those people to see me in my undies. So I prayed. Hey, I’ve been through worse, right? I get epidural spinal block injections. I’ve got this! It’s JUST compression hose.

Renewed in the believe that YES, I CAN overcome this obstacle, I yanked those compression stockings the rest of the way home! Yay! The white walls dimmed to gray. Hold up. It was time to lay my booty down. I had to rest awhile.

Luckily my body pillow and bed wedge was nearby. Phoebe snuggled under the quilt with me for a nap. Next on the agenda was compressing the abdomen with a binder using my foreign weird looking hands, but it just had to wait.