Don't STRESS it...
WRITTEN 3/15/23
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It has been a month since my last infusion. I know that I usually post something shortly after, but life and my schedule filled up faster than I anticipated.
When you are diagnosed with an autoimmune disease many doctors tell you to " Control the amount of stress in your life to prevent a flare up." I can say that I have done pretty good with learning how to limit the stress in my life, but it doesn't help that the medical and insurance world are the individuals putting stress on you the day before your next infusion date.
I called the first week of February 2023 to ensure that our change in insurance was going to clear my infusion which was set for 3/16/23. I was told that they ran a check and they everything was cleared. On 3/15/23 at 9am I get a call from the infusion nurse asking me " Have you left town yet? We live 3 hours away. I promptly said, "No but we plan to this afternoon." She then proceeds to say " Good, because your infusion for tomorrow is not approved." I am pretty sure I came unglued. First of all, I am getting a call 24hours before my infusion to be told this and second, I called a month prior to ensure this wouldn't happen. Tears ran down my face and my adrenaline filled with anger ran through my veins. It's frustrating how the medical system says to you that you need to be proactive with your health and make sure that you are getting your treatment when it is scheduled. How can you get it done on time if they are not communicating with the insurance companies? They could have called prior to the appointment to let me know so we could get things taken care of, RIGHT?!
Don't stress it... Don't Worry... I am played phone tag trying to figure out what the next plan was to ensure I got some kind of treatment.
After a little time to digest what had happened and talking to my family members, I finally was able to just accept the bump in the road. My husband gently reminded me that maybe this was meant to be even if we do not understand why. Either way we will adjust and move on to the next step. When one door closes another will open and sometimes the 2nd door is better than the 1st.
Around 4pm I received a phone call from the nurse I spoke with earlier who told me we are still scheduled for the infusion the next day at 8:30am. The medication was cleared through the insurance, but nursing was not. They were pushing through with it and working behind the scenes to get the rest cleared. I did tell the nurse that I prefer to not have any surprise expenses at which she said I would not have. My mom and I got in the car and made our way to Bend. We arrived around 7:30pm/8pm. Quickly got settled in at the hotel and got some rest for the next day.
Early Thursday March 16, 2023, I got up had breakfast, warmed up the car, took my Zyrtec and arrived at the infusion center around 8:15am where we checked in and got the process started. It was a smooth and successful infusion which I am thankful for. We did have trouble getting my vein in the left arm which ended up failing and bruising. We had success with the right arm and made the plan to only go to the rate of 160 instead of 200. Last time I started to react at 200 so we didn't want to push it. Once I got the 160, we just remained there for the rest of the infusion. I started at 8:30am and checked out at 2:30pm. That was an entire hour earlier that the last few rounds.
Once we reached the point of disconnecting me from the machine and sitting for my 1-hour observation I was informed that medication and nursing was finally all approved which released so much off my shoulders. The cost of each infusion and not knowing whether or not your insurance will cover you is stressful. It is already a rough world to live in and the fear of having bigger bills while trying to raise a family is scary. We finished our day with the positive note that all will be okay which is all that I could ask for. We made our trek back home shortly after being released and eating a late lunch. I am thankful that the roads were clear, my infusion was a success and I made it home to be with my loved ones.
I’m still dealing with leg pains, and body aches. Thankfully the nausea has subsided. It seems to be better than the last few infusions. I am trying my hardest to let my body rest as much as possible before trying to get back into our busy life. It’s a bit of a struggle but I am doing it. At about week 2 I did have some major leg pains that started to affect my walking and overall being present in the moment. I was not able to feel my feet, I felt like I was standing on a vibrating panel, walking felt off. Majority of the time I was walking on the outside of my feet. I did end up taking a weekend and stayed in my bedroom to rest. Thankfully I have the love and support of my family to take moments such as this. My legs did lock up and made it a little difficult to walk so I relied on my cane for assistance around the house. Since then I have returned to doing my physical therapy workouts at home and adding walking/biking to my routine when the weather is nice. Walking more than 1 mile can be tough and often triggers my tonic spasms. I try to best prepare myself for those moments because the nights can be long.
My next milestone in this journey will be to attend my 6 month follow up appointment with my MS specialist in June and July I am due for my MRI to determine if the medication is helping. Until then I am thanking my lucky stars for another successful treatment and keeping faith that things will start to get better. We are 1 year in since starting this journey with Ocrevus and I look forward to seeing what I can overcome in the next few months.
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