We were both leaned back in plush leather chairs that had been kicked out, our boots were out, and our stuffed feet were moving back and forth as we spoke. I was speaking to a person who, quite openly, resembled Albert Einstein. Einstein was a man to us before, but we would part ways as friends, thanking one another for the day we had before saying goodbye. We most likely would n’t run into each other again.
Although, to be fair, my doctor injection from a few days ago in December likewise appeared the same, this is how it did in June.
I’ve previously discussed how my numerous disease has progressed to the point where I no longer recognize it. I’m simply reminded twice a year when I visit my neurologist for routine check-ups, or another time every two years when MRIs are taken to compare the results of previous scans to determine how my MS is progressing. Alternatively, I might get reprimanded two times per year for going to the hospital for my disease-modifying treatments, which take the form of infusions. Or maybe it’s when someone reminds me and inquires about my journey with MS.
At most, I’m reminded ten times a month that I have multiple sclerosis.
This brings me to my most recent upgrades since I last wrote, though I use the term “recent” casually because my last post was almost a year ago. The passage of time over the course of a season during which I did not feel the need to read and where my career appeared to be progressing as any ordinary existence had is an accomplishment. For example, my MS is stable because my annual MRI in March revealed no new tumors. Ocrevus, my disease-modifying injection therapy, appears to be working wonders for me right now, which brings me back to my original doses.
My first experience in 2023 was a summer infusion in June where, despite the heat outside, the hospital room was cold ( as, I suppose, all hospital rooms are ), so I was sitting in bed covered with my blanket, my shoes were on the floor next to me, and my socked feet were spread out.
Albert Einstein, who was standing close by and wearing socks, was even barefooted.
There was another man in the room as well; I’m sure he also had his socked feet out, though I ca n’t recall. What I do recall is his red hair and the conversation we had with Einstein, after which I exchanged the most private of stories.
Red Head and Einstein’s murmured dialogue became louder as I was typing on my laptop. I started to realize that the two knew one another, albeit not always in the outside world outside of our clinics room door. They had developed a friendship through repeated infusions that occurred on the same days.
Red Head sincerely apologized and said,” Sorry, I ca n’t come.” I’m currently confined to my 12 by 12 foot area.
Yes, Einstein concurred. Have you seen the industrial featuring the person riding in an RV with a bathroom? You are aware that the idea was developed by a diseased person?
The two had mentioned being stuck in bathrooms ( which spoke volumes to me after struggling with primary dysmenorrhea for nearly my entire life ) and traveling in an RV ( playing with my emotions as my husband and I pour our souls into getting our finicky antique restored ). By this point, the conversation had piqued my interest. What two more effective strategies did I have to enter their talk, in essence?
So I enquired as to what brought them into the injection area with me, what illnesses they were dealing with, and where they got their stories from.
Red Head was diagnosed with Crohn’s condition at the age of 17, and in just two months, he lost more than 200 lbs to 135 without knowing why.
I had to bring more clothing to university in case of an accident. Knowing you’ll own digestive issues at age 17 was embarrassing, he admitted. He was no longer looking straight at me, but rather at a remote event from his past that caused his eyes to slightly glaze over. I continued to keep eye contact, which is one way injection rooms are treated with respect. Nothing that is shared or seen causes loneliness or guilt. Through a variety of diagnoses and wellness journeys, we are all present. No judgment is made.
Before I could respond, Einstein said,” I’m sorry you went through that.” Ok, compassion and empathy are most clearly understood. It is difficult to explain how these emotions compare to those of others who have not previously experienced significant health issues; occasionally, their words otherwise elicit sympathy, other times, sorrow. However, we do n’t feel sorry for one another or grieve in infusion rooms.
As our injections flow hope into our bodies, we are all powerful. This is not the time to show failure.
However, Red Head and Einstein’s conversation quickly turned to comparing the foods and beverages they may, or may I say could not, consume.
I deduced that Einstein was present at the time because he had been given a colon diagnosis at age 30. He had taken a holiday, and I think it was in France. He instantly lost feeling in his arms. Five IV luggage afterwards, he received a diagnosis as to the cause.
Red Head said, and I was stunned,” I ca n’t drink more than a half gallon of water.” There is no way to compare illnesses, but multiple sclerosis causes urinary tract problems that force me to drink at least one gallon of water per day. I’m fortunate to prevent problems even then. I wo n’t lie, but if I could only consume eight cups of water per day, I’d probably die. I got goosebumps just thinking about how that would strike havoc on my health.
How about some ice product? Dairy”? Einstein questioned before cutting himself off. You ca n’t have milk, I assure you.
Red Head pondered loudly,” Nope- No dairy,” but” I may have butter for whatever reason.”
” Never eat anything with stones.” I assumed Einstein also regretted eating pitted meals when he shook his head in that manner.
Red Head responded,” Yep, no cucumber.”
” No,” Einstein concurred. Lettuce, cabbage, please.
Red Head retorted,” Nope, ca n’t do that.”
Einstein turned to face me and said,” I would n’t wish this on an enemy.”
Red Head responded,” No, you would n’t.” ” I work with a lot of women; they occasionally discuss pain and heart.” When I enter the room as other men are leaving, they often apologize and I join in on their conversations.
” Patient” was something I used to consider putting down for my job. I’ve spent more time in emergency apartments than he realizes,” Albert said, giving Red Head a smile before they both laughed.
Oh, I see, to! Red Head said before they started laughing once more.
” I’ve fallen into the community death pool because I now have a family member who has heart issues and intestinal disease!”
I could n’t help but chuckle as well, which may be the reason Einstein felt compelled to counsel me. I am the youngest person in the room almost every day I have an injection, so perhaps it’s because I’m younger. ( I can only think of one or two who were younger, off the top of my head. ) As a result, I believe that the majority of people receiving treatments think that I am beginning my injection operation and, consequently, my health journey, necessitating the dispensing of wisdom. They are unaware that I have been living with a numerous disease treatment for eleven years.
” You must be believable while maintaining a good outlook.”
There are times when you forget you have the illness.” You tell those who matter your limits and interests, and you try to do the best you you.”
I bought two boxes of donuts to enjoy the chance to have an injection that time, which means I focus on the positives because enthusiasm has energy. This is a great training I have learned with MS as well. I joyfully munched on a cake in the car before driving to the hospital because one of the boxes was for my husband and I.
Before the other people arrived, I gave the box—which contained an range for the nurses—to them.
Although my red-headed companion had presently dozed off and the three of us were napping like babies within the next few days, I refrained from telling Einstein about all of this.
But in the end, that June infusion went also, just as they do for me now. As I mentioned at the beginning of this article, Einstein, Red Head, and I parted ways with a wave and some kind words after our drips were finished. Due to the various procedures that call for different intervals between times, they may return on different days. I might not find out how they are right now.
Six months later, I was back in the same injection place, sitting next to the identical nurses. I was once more stretched out and barefooted in cozy socks, and I even had the same cover tucked around my lap.
I’ve learned to appreciate my treatments because they help me stay calm and give me time to myself.
Additionally, I have the option to create infusion friends during this time.
Two ladies entered as I was working on my machine; one was pushing a chair and the other was in one. I discovered they were daughters through conversations with our nurses, but what I afterwards learned was really fascinating:
The chair user, whom I may refer to as Sylvia, was given a multiple sclerosis diagnosis five years ago and is now 72 years old. The second man I met with an MS diagnosis later in life was Sylvia. MS is typically diagnosed between the ages of 20 and 40.
I nearly lost my balance in my seat. When her physician suddenly determined the root of her health issues, Sylvia admitted to me her response. She had been experiencing excruciating foot pain, and after seeing numerous doctors and having numerous foot surgeries, she eventually realized that an autoimmune disease was the cause of her issue. To assume that during all that time, no one performed a blood test or had any other thoughts when I had MS the entire time…” and her voice dwindled.
I’ve also discovered that multiple sclerosis is frequently misdiagnosed because the symptoms are widespread and irregular, mimicking various medical conditions.
” Did the foot problems subside? ” I enquired.
” No,” she replied, shaking her head. It always did.
We had a simple conversation after that and I discovered she has democratic various disease. ( I have relapsing-remitting, which is characterized by episodes of new symptoms that then subside. According to the National Multiple Sclerosis Society, 85 % of MS patients start out with relapsing-remitting symptoms; but, as the illness worsens, the majority of those I have encountered develop this type. This results in fewer episodes but a steady decline in illness.
Sylvia then revealed her chair as she admitted to being clumsy while exiting an MRI device, which led to her falling. However, I’m losing muscle mass as I sit here, she said. I keep pushing back the time until I can walk. I first said” November for Thanksgiving,” then” December for Christmas,” and now it’s two days after Christmas and I’m still in my chair.
Although I knew Sylvia was not confined according to MS, the fact that she is wheelchair bound is my greatest fear when it comes to various sclerosis. Despite this, it also rattled me because many people with MS do require wheelchairs. However, Sylvia’s comments caused me to have a different realization when she spoke: Some people who use wheelchairs just lose muscle mass, which prevents them from ever being able to walk again. For instance, multiple sclerosis may make people feel off-balance, which can lead to falls. It is the slide itself, never the MS, that brings the chair, so it’s possible that the amount of work afterward will determine whether or not people want to use it. At this point, I had the following two thoughts:” If there is a will, there will be able,” and” Mind over matter.”
I’m going to leave this head now. ” Sylvia’s conviction shattered my train of thought.”
I was honest with her, and of course she had. I encouraged her, and she threw a smile my way.” When the urge is that, you can make it occur.
Oh, the need is there just fine, she assured me.
When the facts are incorrect and there is a desire to correct errors, Sylvia’s sister would sometimes add tinier comments to our conversation. This is the way sisters enter the room.
You began taking Ocrevus at that point. The start of Sylvia’s treatments was pieced together by the fact that her sister and she were having a brief discussion about which quarter he or she graduated from college, which also indicated that this was Syllvia for the next time.
Our conference becomes even more outstanding at this point because not only did we share the same illnesses, but Sylvia was also receiving an Ocrevus injection. As a result, it’s unusual to encounter someone who has the same illness in the injection room, but it is surprising to run into someone receiving the exact same treatment.
Sylvia enquired about my prior Ocrevus procedures and the effectiveness of the procedure. ( This seat was strange because I usually ask people questions or listen to them talk, but they never do. ) It is unusual for me to share my personal experiences and stories because folks feel most comfortable talking about themselves and I was born interested. These, in what may be my online book, is the only exception. But I told you about my three-sentence treatment plan: first on Copaxone, then on Aubagio. I’m currently taking Ocrevus, and the cure has been very effective thus far. Since taking Ocrevus, I have never experienced any new lesions, and the medication has stabilized myMS.
She explained that she has two cousins who have MS ( By the way, MS is not hereditary, so this is unusual ), and she appeared to be as happy as I was to hear the news. Sylvia was curious about my experience with this substance because one aunt is now taking Aubagio. I discussed how my MS was getting worse and how I was losing locks. Around this time, Sylvia enquired as to whether I had actually grown weary of Aubagio.
She told me,” My aunt gets so exhausted that she needs to nap constantly and throughout the day.”
It’s strange what the brain remembers and what it does n’t, so I told Sylvia about it because I had forgotten about how exhausted I was and had not realized that Aubagio might have been more to blame for my exhaustion than MS.
I told her,” Truly, in the middle of eating breakfast, I may walk my plate of food to the side and take a nap right on the dining room table.” I would have to quit moving and lie down on the floor to sleep because I was thus worn out. I recall a time when I actually dozed off on the stairs at my parents ‘ home.
Once more, we were astounded by what the other had discovered, but what about her another aunt?
Aunt Two has been using Ocrevus for centuries, much longer than the Food and Drug Administration in America gave the medicine its go-ahead. He resides in Germany. Sylvia claims that there is no FDA in Germany, allowing people to take Ocrevus sooner. Although I am unsure of the validity of this claim, I discovered that the FDA had given its approval for the drug about seven years prior, in March 2017. Nearly two years later, in May 2019, I received my first injection, and I recall a great deal of dread beginning it because of this.
” Would you mind unhooking me, please, so I can use the room?” When our talk had paused for a while, Sylvia questioned one of our nurses.
My thoughts immediately returned to where I was at this point.
Infusions are strange in this way because, despite talking about them, I constantly forget that I’m receiving them in a clinic, an infusion area, or while wearing my socks and telling strangers my most intimate stories.
Sylvia went to the bathroom and came back shortly after, but the Benadryl and the slow drip of day took their toll on her, and she soon fell asleep. My injection on this December day went without any problems, other than a slight drop in my blood pressure, because she had arrived an hour or so after me. ( Normally, the nurses can wake me up or ask me to drink water, and it returns to a safe level, but this time, it kept dropping, so I was given snacks. )
The nurse told me as she wrapped my arm around where the injection knife had been,” You’re all collection. Content New Year, everyone!
I grinned and wished my nurses a glad new time before turning to Sylvia in the hopes that she would have woken up so I may say goodbye. She remained motionless.
I muttered to Sylvia’s girl,” Bye.” Bless your sister for me, please.” And I waved quietly and peacefully so as not to upset.
“SLYVIA!” ” Her sister yelled and appeared to be smacking her.” Sylvia gave a small jump before opening her eyes, despite the fact that her hand not touched. Her sister softly said,” She’s leaving, but I waved once more.
Sylvia expressed her gratitude in the same honesty that Einstein had expressed to Red Head weeks earlier.
You’re pleasant, I replied to her. I hope we become infusion friends and I run into you again, but the next time, you wo n’t be using a wheelchair because” and I paused.”
The teeth Sylvia displayed is the same kind I had when I left and later met my husband at a fantastic Southern eatery known for its bread, collard greens, mac and cheese, and cooked catfish. It was appropriate to celebrate my seventh year of receiving Ocrevus treatments.
I cuddled with each of our three kids after Andy and I returned home with full stomach.
To be absolutely honest, I have a lot of plans, goals, and desires for 2024.
But at that time and the day following my MS injection, all I wanted was to spend more good times with our small family of five.