QUARTERLY CONDITION CONVO
ME, MY FAMILY AND WHAT WE HAVE LEARNT SINCE JANUARY 2021
While I have recently simply added blogs that are both easy for me to compile (not requiring much time or emotional investment), the last 6 months have been quite a challenge....not only for me but for those around me - the cliched ''unsung hereos'' or rather in my case : heroines !
I am going to make sure these updates are not long or emotional as this would truly defeat the purpose of the message. I will always make it clear that M.S. (much like any other horrible disease or even any stressful, life changing event) has the ability to break ones spirit and push you to a place that is dark and lonely.
But these quarterly updates will focus on the exceptional support that lies in front of us all - regardless of the mountain we may be climbing. The key is to IDENTIFY where you can get the support and then to ASK FOR HELP...a difficult process that we all need to master.
MID JAN was the moment that this COVID KAK hit me where it hurts. Chris V. had become an incredible friend to me in the 12 months since he, his wife and young son moved into a house across the road from us. We spent hours chatting to each other across the road and I was amazed at his positive outlook on everything despite having moved to Cape Town from Bloemfontein 3 months before the pandemic set in....effectively destroying his business.
In December 2020, his sister got the dreaded virus but, thinking at the time it was a diabetes issue, Chris rushed to help get her to hospital. Unfortunately, his sister passed away three days later, but the revelation that it was due to the virus was a bitter pill to swallow as. Once tested - he too was confirmed to have been infected with COVID after helping his sister.
2 weeks later he was put on a ventilator and another 3 weeks later (having celebrated his 50th birthday in a coma) he died from complications. The photo above was taken the night before he was called in to assist his sister at home.
FEB to MAY were very challenging for Jackie in particular. Towards the end of 2020, I was showing a few signs that only she could actually identify as a concern.
My left leg was atrophying at a faster rate than expected.
I was also battling with my right eye, which is where the first diagnosis of the MS began - optic neuritis.
I was (and still am) choking at the most inappropriate (COVID) times - whether eating, drinking or simply breathing....seriously !
I was also battling a bit more than usual to overcome the usual fatigue that I am so accustomed to.
I think the final straw was when Jackie noted me getting ratty with the kids and her - something that does occasionally happen - mainly when I am tired....but it became more and more frequent and we are aware that it is a strong indicator that things are not as they should be.
I had no hesitation in agreeing to Jackie's suggestion for me to have another MRI scan 6 months earlier than my usual annual scan.
After all was done, the doc confirmed 2 more active lesions on my brain - to go with the 13 already there.
NEXT STEP ? change of medication from COPAXONE - in injection that I had taken DAILY for over 6 years....to PLEGRIDY - thankfully a bi-monthly injection. All sounded good as, while my official MS diagnosis had progressed to the next stage : SECONDARY PROGRESSIVE MS, we seemed to have a stronger med approved by medical aid and only needed twice a month.
FAST FORWARD 3 months and the bottom line was that the new injection was horrible. It took me a week after the injection to recover fully....spending most of the time in bed. My joints ached, I got hectic headaches....generally I worse than before the new medication had begun.
Once the neurologist agreed that I needed to stop the new medication, he suggested I undergo a fairly intensive 3 day process of Cortisone drip infusions while we waited for me to undergo another MRI in May.
The results were definitely positive - no new lesions - which did mean that the PLEGRIDY medication was the problem. So, back to the medical aid to ask to be put onto another medication.
TODAY I complete DAY NUMBER 7 on the new TABLET....yip tablet...NO MORE INJECTIONS....well....not for the near future at least after 2250 injections since 2014 !
The AUBAGIO seems to be MUCH better, and hence the reason I am able to let you all know about it via this blog.
Earlier this month, Jax booked me in to see an E.N.T to try to find out what the issue with the chocking really was ?
Thinking it was probably a case of acid reflux, I had to have a SWALLOWING X-RAY to find out. This rather disgusting liquid was completed in double quick time.
After the doc had a look at the X-RAYS he confirmed it was NOT acid reflux, but it appears to be another case of atrophy - this time, the medical term is in fact DYSPHAGIA - when the muscles in the throat are not working as they should ! Next for me is to see an O.T. to see how I can ensure we can maintain the swallowing function for as long as possible.
in closing, as I mentioned in the introduction to this blog, I would like to recognise my family for their incredible support. Jackie is not only my champion, she is what keeps me positive even when things get rough. Lets not forget my own mother, who is constantly offering her love and support. My in-laws are exceptional as they assist with lifts and other seemingly easy tasks while Jax is focusing on supporting me.
Michaela turns 18 next month and is really putting her head down in her quest to get the marks she wants in matric this year.
The twins, Loren and Genevieve, are soldiering on while the pressures of the new world for teenagers continues. I love you girls....and thanks for letting me be me - weird at the best of times.
cheers for now...The ADJusted Thinker