Whoop There It Is… Another Bump In The Road…
I guess this all worked out great as we enter “MS Awareness Week”. March 13th through the 20th, 2022. We all have stories to tell and mine just got a little more interesting…. Shall we begin???
We arrived in Bend, OR around 8:30pm Wednesday evening after driving through a little bit of snow. We checked into our hotel and spent some quality family time. My son and husband fell asleep with no problem. It was 10pm and of course I still found myself wide awake. Thinking about my MS journey and how hotels remind me of the many trips I have taken to visit doctors. The many challenges that have occurred and yet we still drive home with some kind of relief and assurance that all will be okay. I was emotional and not sure what to think. I felt like I wanted to cry but my body didnt. I just sat in bed, tried to meditate and waited to see what the next day brings.
Thursday March 10,2022 was another event to add to my journey. I started my day at 6:45am to best mentally prep for the day. I had breakfast with my little family before they dropped me off at 8:50am at the infusion office. I was greeted with a warm welcome from my nurse Jeanna who was with me every step. Once I checked in I was escorted to a small room about the size of a doctors office where there was a chair, dinner tables , tv and counter for medication. I started to make myself at home while the nurse gathered supplies to hook up my IV.
I showed my snazzy infusion jacket that unzips at the forearm so IV’s could be used and arms kept warm. I can’t count how many nurses were in aww of the jacket and never seen one. They do infusions all the time and I guess I’m the first to show up with one. Around 9:15am I was hooked up for an IV and some labs were taken. Shortly after that I was given 2 Tylenol pills, and a dose of steroids. We started to administer the Benedryl which took a little longer than planned. The Benedryl began to give a burning and pinching sensation. I was called a “virgin Benedryl “ because I had problems and I’ve never had Benedryl before. She did talk with her coworkers to see if they might need to give Benedryl pills instead of thru my IV. They decided that they were going to push thru with it using the syringe but at a slower pace. By 10am we managed to get the Benedryl in and we then had to wait 30min before starting Ocrevus. At 10:30am I was hooked up, had a dancing partner (IV monitor) and Ocrevus was set at a slow dose release.
Once Ocrevus was started I worked hard at maintaining hydration so I took walks to the bathroom about every 30minutes. They had one main bathroom but each time I had to go someone occupied it. So they showed me a storage room with a toilet. I basically claimed it as my parking space. I took the monitor with me and said I was visiting John every time I went.
My nurse checked my vitals every 30minutes to make sure everything was okay. If all was good she amped up the pace . Every half hour things are amped up by 30. I started at 30 and the goal was to get to 180. Here are some pictures of what I’m talking about.
11am rolled around and all was going well. I did phone calls and suddenly just felt very tired and sleepy. I knew that steroids made me sleepy but Benedryl added to the relaxation mood. The nurse said it’s like a cocktail. I don’t drink so I didn’t have something to refer to. Shortly after vitals were taken I told the nurse I was going to rest a bit. She turned off the lights, I curled up with my blanket and started to dose off.
I was just getting comfortable when a weird sensation started to occur at about the half hour mark 11:30am. My right side of my face and mouth felt numb. It was like a novocain shot you get at the dentist for a filling. I then sat up and rang my fancy bell (the type you see at a hotel- metal and round with knob on top) . My nurse was right at the door when I mentioned my numbness and that I was going to venture to the bathroom. She said okay we will monitor you. I looked in the mirror in bathroom and saw a red spot on my ear which instantly started to grow and create a rash/hive. I showed the nurse and she was shocked at how fast it occurred. At this time I was already at 90 going on 120. She quickly helped me get into the room where she consulted with another nurse and a pharmacy tech named Jill. They stopped the medication just shortly after 12(noon) and began to administer more Benedryl.
While my symptoms of itching and numbness were finally clearing up the tech was asking a bunch of questions regarding major illnesses, vaccine updates, or recent infections etc. while I was trying to stay calm, I honestly felt interrogated but I know they were trying to figure out what could be the cause. The rash/hives is a normal side effect but the facial numbness was not a reported side effect. We already know that I am not a general medical text book you can find answers from. I have my own book and my body does things on its own. That one person who is rare is ME.
The tech then gave me a scare which instantly skyrocketed my blood pressure up to the moon. She said that I could have John mumble mumble mumble. The exact way I heard it as I already mentally checked out of the conversation. The nurse even looked at me and the tech and said what? I honestly do not like when someone names something that you didn’t understand and they tell you that you might have it. After they left the room to contact my doctor to see if we should continue. The nurse came back that the virus that was mentioned by the tech was known as the JCV virus. I then looked at them and said I know that is negative because I was tested for it prior to the appointment. I was relieved to know that what was mentioned was already tested for but I was still in fighter flight response. They confirmed my results with the office but then another issue came up.
While I was pacing back and forth in my room like a tiger in a zoo I was informed that my doctor was on vacation until Tuesday. Just exactly what I wanted to know. The information was forwarded to other doctors in the office in hopes of a decision to challenge (restart) at slow pace or stop. Another hour went by of just waiting for a call back. Around 1:50pm I was with the tech and nurse when I was informed that the other doctors did not feel comfortable continuing the medication due to lack of knowledge and the side effects I had. They figured that about 1/3 of the bag was used and introduced to my body. The bag of Ocrevus was then taken and discarded right in front of my very own eyes. I watched my future and hope walk away from me. I was devastated and tears started running down my cheeks but already had a feeling that this was the direction we were going. I honor their decision and thankful that they didn’t just ignore the information that was given.
They continued to take my vitals because I kept breaking the machine with my impressive numbers. I even developed a low grade fever. I decided to stay until about 3pm to be monitored and at that time my son was napping at the hotel so my ride was currently occupied.
After talking to a few family members and eating my snack foods my heart rate leveled out and the fever subsided. The nurse removed my IV around 2:25pm and I just sat quietly in the dark room thinking, and trying to understand why. At 3:15pm I was discharged and greeted with the biggest hug from my husband and then cry of “mama” from my son.
I cried and showed how vulnerable I was to a nurse and loved ones as I kept them all in a loop. One of the toughest parts about the pandemic is the limited connections and support available to patients. I could have used a hug so badly. I feel like a failure and are struggling with anger and sadness. I’m ready to be cured and I know that several other people are too. My husband even told me he wished that he could just find a pill that cured everything. He even struggled with being away and hearing those things are not going as planned. I honestly was so emotionally numb that I was like a robot shortly after my husband picked me up. I can't imagine the emotions that my husband was going through with not being with me and I was trying to update him as events went along. Shortly after I left the infusion center I felt like I could not quench my thirst and my body was achy. I put a smile on my face for my son and we went to Barnes and Nobles where I watched the boys be bookworms. I looked at my little family and sighed with the relief that I am still here and could be with my family. I am thankful for the quick response that the Option Health Services gave. I can’t thank them enough for their care and listening to me.
I definitely was the talk in the office after all was said in done. A gentleman came and talked to the nurses about my reaction so he could report it to the DMT offices. I am not one to ease drop but it’s hard to not hear a conversation regarding your situation when your door is open and people speak in a loud tone.
So we are at a halt with DMT until we can get a response from my doctor on Tuesday. I feel like we might be stuck at a dead end or round about with no exits. My husband says he feels like he has been pushed back onto his heels ( boxing reference )
We all went into this journey with some kind of fears and worries. Some of us worse than others. We knew the possibilities of there being reaction or side effect. We don’t know what the future will be like. Tonight we lay in bed saying our blessings and being thankful that nothing was too severe. I am achy and tired but doing well other wise. We are struggling to understand where this path will lead us but we are trying to be as positive as possible. Individuals with chronic diseases deal with trial and error. It’s part of our journey. It’s definitely not something we like to deal with but we are strong. MS may knock us down but we will continue to fight back and stand up with our heads held high.
I don’t want this blog post to scare any individuals in the midst of their journey. Just remember to be your own advocate. You know your body better than anyone else. Don’t just push through something if it doesn’t feel right. Stay educated, talk to your doctor and don’t be afraid to reach out to others who have gone through the same process. Together we educate, learn and grow as a community/MS family. Not every ones story is the same and remember YOU GOT THIS!!!
So Whoop there it is…
Another bump in the road. Proceed with caution🛑⚠️
Stumping One Doctor At A Time
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