MS Awareness Month – A Personal Experience with Infusion Therapy

Oh! The irony….

The first stick today at the infusion center was in a vein just below my wrist staight down from my right thumb. It stung like crazy. The nurse, a very happy, kind young woman in her 20’s had to move the IV to the left side of my left arm. I was well hydrated, but for some reason, I was extra sensitive to the pokes today.

After the premeds of solumedrol (a steroid for inflammation reduction) and Benadryl (for prevention of possible allergic reactions to the medication) were given and when the 30-minute wait time was over, it was time to start infusing the half dose of a new medication my neurologist prescribed because of the increased MS symptoms I was experiencing and the three new lesions seen on my recent MRI. The stress of the past year has definitely taken a toll on my body.

Ocrevus is a medication which is initially infused twice, 14 days apart, and then as an infusion every six months to reduce the symptoms and number of future MS relapses. There is not a cure for MS, but the medication can be helpful in slowing the progression of the disease.

My arrival time was 9AM this morning. Riding in the elevator in silence with my husband to the second floor was not intentional. The closer we got to the infusion center the more nervous I felt. The elevator doors opened and we walked straight ahead and took the jog to the right. Behind the glass door that we walked through into the infusion center, sat a very bubbly blonde girl behind the desk She was eager to help us feel welcome. I recognized her voice as the one who scheduled the appointment with me and called me “Sweetie” before hanging up the phone last week. Someone younger than yourself should NEVER call you “Sweetie.” It feels disingenuous and condescending, in my opinion. She, however, was very friendly and did help us feel very welcome.

The room that was going to be mine for the next 7.5 hours was inviting and even had a homey feel to it. I was directed to sit in the big dark brown leather recliner. My husband sat in a very nice cloth wing-backed chair on the other side of the end table placed between the two chairs. On the wall in front of us was a large TV hanging above a side board with drawers where the nurses accessed the necessary supplies. It was the same width as the TV. The TV was displaying a beautiful cozy sitting room with a fireplace and all kinds of St. Patrick’s Day decore dispersed about the room which gave a bit of a wimsical feel to the coziness.

The normal medical history questions were asked and answered. When the nurse asked me, “How do you sleep at night?” I could not help my response, “With my eyes closed.” She laughed like she knowingly had that coming. All of the nurses were kind, helpful and reassuringly stated they have very few people who have reactions to the medication.

Well, I had a bit of reaction, so the medication was stopped for 30 minutes and restarted at a lower dose. I started to feel shaky so the nurse brought a string cheese and an apple juice for me. By then, it was late enough that she let me choose a lunch to be delivered by Uber, which was paid by the infusion center. That was a nice perk of choosing them, (if you can call it “choosing” when they were the only one that was in-network with our insurance).

The remainder of the infusion ran smoothly. The nurses checked my vitals every 30 minutes. My blood pressure, oxygen, and pulse were good the entire time. At 4:30PM we walked out toward the reception desk. I stopped in the hallway where I let the nurse know that I was experiencing some double vision in my left eye. She said if it got worse or if I started to have new symptoms that I should go to the ER. One of the other nurses will give me a call tomorrow to check on how I am doing. When that call comes, I hope to answer while at work, since I am feeling better tonight. It is nearly 11:30PM, and I am wide awake. It comes as no surprise because of all the napping I did today, thanks to the Benedryl.

And then this happened…

Feeling very emotional, one day, I wondered if I could release my emotions through a fictional scene created from emotions I was feeling. In my mind, I was screaming right along with her. Here is the result…

It is not very long, but it’s a start. And it is fiction. And it worked! The emotions I felt were screamed right out along with her feelings. In my mind, I screamed with her, pulled my hair out with her, jerked away from the technician, sobbed and walked around the firepit aimlessly. It was a very interesting experience/experiment.

The story brings up so many questions and could go any direction. Thoughts?

Making the best of it

Monday. Sitting here with my husband at the North Clinic Check-in, waiting for his appointment with the orthopedic surgeon to look at his left knee. Again. The appointment, which was scheduled in August, can now be canceled.

Three days ago, my husband stood up from the bed with the aid of his walker and nearly collapsed to the floor. The pain in his left knee was excruciating. Fear filled the room like fog filling the room from a fog machine at a rock concert. Not another infection! You see, once you have MRSA in your system, it lies dormant and can rear its ugly head at any time.

The medical assistant in black scrubs with a long french-braided ponytail cascading down the middle if her back checked my husband in. She happily asked, “Where’s the pain? When did it start? What meds are you on?” He answered each question. She stumbled over a couple of words, which she blamed on the fact she had just returned home last night after spending a month in France for “study abroad” so she was a little tired. That was not something I would have guessed about her. She seemed awake, happy, and her word stumbles were not noticeable. I wanted to talk about her experience in France, but she was quick at doing her job and the next thing I knew, she was headed out the door to let the doctor know his next patient was ready to be seen.

The doctor is easy to talk to and very personable, a bit unusual for most surgeons. Long story short, another surgery is in my husband’s future. In three weeks, he will have his 9th knee removal and/or replacement surgery.

Here we go again. Good thing he is full of determination. Sigh….

Smokey Sunset

Tuesday. Our conversation on the ride home last evening after Joe’s appointment was mostly about what he was feeling about another surgery and we started planning for an upcoming week-long stay that our 7-year-old grandson has with us prior to the surgery.

Our daughter said our grandson is very excited to spend the week with us rather than his other grandparents because he “gets too bored” when he stays with them. And, I thought they were the fun/interesting ones! Now, I am questioning our planned trip to the museum. Guess we better throw in an ice cream cone. 😉

Life goes on…. Make the best of it!

Step it Up

The number of steps from my car parked in the parking garage at the University Hospital to the top of these stairs is 210. The number of stairs between the escalators is 25. The number of steps from the bottom of the escalators to the cafeteria is 103. I did not count the steps from the top of the stairs to the elevator or from the elevator to my husband’s room on the top floor.

I figure I walk about 1000 steps total for each daily visit, including walking up the stairs after every visit to the cafeteria. I thought that was pretty good. Then, my husband told me that a person should walk 10,000 steps a day to maintain good health.

An article in New Scientist says walking between 9000 and 10000 steps per day appears to reduce the risk of early death or heart related event.

My heart was beating out of my chest and my lungs were huffing and puffing with every climb up those stairs and walking the distance to the elevator and from there to my husband’s hospital room. Those stairs really should count for something…extra!

I wish driving counted. I am going to put a lot of hours and miles on the car for the next several weeks visiting my husband every weekend in the physical rehabilitation facility located three and a half hours from home for the next 6 weeks. He just spent 7 nights in the hospital following an emergent (5-hour) knee replacement revision surgery due to an MRSA infection that then spread to his bloodstream. 

I will walk at the gym or around the neighborhood to increase my number of steps while at home. I will listen to books on tape or podcasts driving to and from the PT rehabilitation facility. I will increase my heart health and mind health while my husband is simultaneously increasing his physical health.

Goals are good.