About 2am now… will be receiving my last steroid IV tomorrow morning at 9:30. Had to skip Saturday and Sunday infusions because home health was not available – crashed hard over the weekend from my first 3 days of steroid withdrawal and now I resumed day 4 today and will have day 5 tomorrow.
Insomnia is in full swing and even after taking medications to help me sleep, I think I have maybe yawned once. However, I sit here with absolutely no initiative to get off the couch and get anything done – too tired and loopy but not sleepy – weird. I feel like I am in a dazed limbo.
I hope I might become myself again possibly by Thursday/Friday. Been trying to do things with my boys and having fun with them but it’s so tough with spasms, pain, brain fog, daytime fatigue, and a nightly lack of sleep. I have all these fantastic plans of cleaning my house, crockpotting, organizing closets, and taking my boys to fun places… but I am stuck right now.
Sleep is necessary… so I am going to lie down and pray that I can close my eyes and dream of wonderful things happening in the near future.
I had my most recent MSC appointment a little over a week ago on August 1st. I almost missed this appointment though thanks to not having this appointment in my phone calendar and thanks to a pretty rough night.
Starting with the rough night story… the night before my appointment, I went to my usual Mexican fiesta night with my sister-in-laws and not remembering that I had to wake up at 6am the next day, I indulged in a jumbo peach margarita. When getting home I remembered that my appointment was the next day and I had to sober up quickly and arrange for my boys to have someone to watch them since I would be leaving well before they were going to wake up. Of course I had insomnia and a horrible headache until around midnight. Then I tried going to sleep and my stomach started hurting. I awoke at 2am nauseous and ended up in the bathroom bringing back up a peach margarita. Feeling better, I returned to bed only to be woken up twice by both of my boys crying that they were having nightmares. So, when my alarm went off at 6am I had only gotten 2 hours of miserable sleep and was on my way to my appointment.
With coffee in hand, I arrived at my appointment with some time to spare. I had the standard set of tests performed including another MRI, 20 vials of blood drawn, OCT test, neuro tests, visual tests, visual evoked potentials and mathematics adding test. My brain hurts just thinking about that math test! I found out that my previous MRI from last month did not show any new enhancing lesions, which is amazing because I have been off all MS meds since Feb. 19th, and ironically this was my first clean MRI since I was diagnosed. I have been feeling a lot better overall since being off medications… hmmm… but I digress…
Anyway, I got the fantastic news that…
MY CELLS HAD GROWN AND MULTIPLIED!
They are now cryogenically frozen at Case Western Reserve and we are waiting on a test result to come back which tests for the sterility and viability of the cells. Once this test comes back, I have one last pre-infusion appointment which will put me through the same standard tests one last time before I get my stem cells infused into my body. That appointment is on Sept. 12th, and that’s when I find out that everything is officially a go for Oct. 1st!
And because everyone seems to be asking about the specifics of my stem cells and my infusion, I share with you a YouTube video which describes the mesenchymal stem cells that are instrumental in this study:
And my infusion will be of my thawed stem cells through IV. I do not go through any chemo or radiation thankfully. I will be receiving about 2 million cells per kg of body weight. My main hope is that this infusion will stop the progression of my MS. I would love to see repair of damaged myelin and nerve/brain tissue and recovery of eyesight in my right eye and strength and coordination of my left leg and arm. Getting balance back and getting rid of fatigue and spasticity would be great too.
25 hours in the day. That would be ideal right now. I have been incredibly busy, to the point of total exhaustion.
Why am I going crazy with “a whole hell of a lot of busy”?
On top of doctor’s appointments, I am refinancing my house and the appraiser is coming on Thursday! Ahhhhhhhh! I am having my rental remodeled (basically getting gutted from floor to ceiling). Bigger Ahhhhhhhh! Then I am playing delivery girl during the day, driving supplies from Home Depot to the rental daily. Huge AHHHHHHHHHHHH! I am lucky to be home in the evening to spend time with my kids and continue cleaning and make my home look more liveable.
I cannot drive during the night because of my vision, so at least that is helping make me accountable for being at home by the time the sun sets. I did go to bed earlier the last few days, but my body then yelled at me at 5am to get up and do something. If I tried not to listen then my brain went into over-drive with all the thoughts of what I needed to have done by yesterday.
I feel like I have OCD ADHD. If I had one more hour in the day, I would definitely stop and take a well-deserved nap. My body is so mad at me right now. I should be sleeping, but my brain is saying “no! Stay awake and post something in your blog and get more stuff done.”
