Egull1's Journal

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22 May 2024

It's interesting to be on the struggle bus and relieved at the same time. Had my first blood draw yesterday to see what the collateral damage is post "RONA". I'm not going to lie - she hit this system hard. Everything is a push for me right now and I'm not used to going from a space where I can turn on a dime, hustle like no one's business, and still pull out 30 miles on the bike and not blink twice. This drain feels much like my first year after the MS flare up in 2017. Dizzy spells, lack or coordination, forgetfulness and my sense of smell is slooooowly coming back.
That being stated, I was genuinely relieved and thankful for my T-cell results yesterday. The last blood draw before "Rona" had me at beautiful 44% Lymphocyte range (which, is very good). Yesterdays blood draw was at 27.6%. So, yes "Rona" took a hit, but she didn't tank me. It's at the lower end of normal, but it's still normal.
I'm still keeping up with all my workouts and care-giving tasks as my Mom recovers from her last and final joint surgery. But, definitely moving at a much slower rate. Still, at least I don't have to walk around with a mask all the time and live like a girl in a bubble. Am also very thankful I got this version of the virus. It became clear to Mom and I after my temp hit 102.7 that the first couple of versions of this thing would have taken me out, very literally. So, the universe has definitely been watching out for me over the past few years.
Nothing else to be done, but take this body where it's at and transcend from there. She fought a good fight and won. And, I'm very proud of my immune system. I've had many private conversations with my t-cells since this virus came out. And, as I stated to my care team yesterday "I know my immune soldiers have mis-behaved in the past, but when push comes to shove they knew exactly what there mission was and they did exactly what they were supposed to do." Have a very blessed and beautiful day my FS peeps!

(15 comments)

18 May 2024

Weight:	Lost so far:	Still to go:	Diet followed:
53.8 kg	41.5 kg	0 kg	Reasonably Well

Add Comment Gaining 0.3 kg a Week

14 May 2024

Mini update - I reached out to my care team yesterday and gave them a condensed version of my first experience with RONA similar to what I put in my last FS post. Nurse Christy responded with:

"I am so glad you fought the battle and won!!! Your message had us giggling. Dr. Craddock is happy to order a CBC for you, she just wanted you to be aware that after COVID or any other severe infection, your counts can be "off" for a while until they finally self-correct. We can draw this, but it may need to be repeated. I will put the order in, it is up to you."

A few things bare noting for context here. Christy is purposely referring to my counts as potentially being "off" instead of using the word "low" because my specialist and me have a long standing argument/debate of t cell -count threshold. Jessica goes more by the western model and likes the "cut-off" to be around .6 or less before taking a patient off their meds.

I'm of course, less brazen with my immune system. It's true that PML --> progressive multifocal leukoencephalopathy & death from JVC is rare. But, if I'm hopping around the MS forums and come across random posts stating

"Yeah, that person isn't around anymore. Their t-cell count got to low from their ms meds and they died from PML..."

That tells me, the bottom line is there ARE folks who have died within the my community specifically because their meds wiped out their immunity enough that they had no protection from any cold/flu/virus at all. So, my t-cell count threshold is on the higher end around .8 X 10(9) per L.

However, this is a different situation. Depending on what we find, If my t-cell count is extremely low right now - it wasn't technically my meds that tanked them. That credit would belong to RONA. It puts us all in a pickle of a circumstance. But, I'm not inclined to get off the ms med even if the virus wiped out my immune system's army because in this case given some time, my t-cells "should" be able to recover.

But, I'm also aware that because of the immuno-suppressant I'm taking - regeneration of new t-cells may not happen quickly and I'm also aware I may never hit the 44% I was before. But, I can live with that as long as I'm around .8 X10(9)/ cells per Liter.

So, my response was

"Definitely, put the order in so we can see what the lay of the land is. And, let Jessica know it's okay I'm not going to panic if the t-cell or WBC count is super low. I'm definitely staying on the the meds. In fact, right now I'm very diligent about taking them because if I do have any tired soldiers left - I'm not about to let this system use friendly fire. Last thing we need right now is a flare up in any, way, shape or form. But, some precautions may need to be used if the counts are very low and maybe some immune boosting foods and patience. No problem with repeating the blood draws so we can just monitor what's happening"

The gist of this is that I may need to be a "girl in a bubble" for a bit until we know what we're working with. I'll be getting the first draw a week from today and have prepped this mind not to be surprised by anything I see...unless it's pleasant of course! LOL!

In the meantime, I just implore the same methods I used to beat RONA, because, ironically they are actually the same methods that help regenerate new t-cells! Fancy that!

Anyhow - Have a beautiful, blessed day everyone. It's been a gorgeous spring! I hope you enjoy a few flowers from our garden :-)

(11 comments)

11 May 2024

Well, this isn't surprising.

Okay folks - for those that have been following. Ya girl got the "Rona". Finally, after all these years. Miss "Rona" and me finally met. She threw quite an arsenal, too. I knew she would. Got all the weak spots. Fried my brain, made my joints scream, and completely took away my ability to smell.

...But, then - me and this form have an arsenal of our own. And, we'll just say we used it in spades.

Did you know that when you hit a certain level of activity, over 2000 molecular changes happen on the cellular level in your body?

That and losing over 4 lbs of sweat and "other junk" (mainly from nasal passages) is not actually a very optimal way for a virus to thrive. In fact, it considers that rather volatile especially since sweating is actually the body's natural way of detoxifying.

Miss "Rona" said, "NO, you're not going to go 24.7 miles at 244 watts for 75 minutes while I'm ravaging you!"

Me and this form said, "Oh wait bitch - you had your turn and now its ours!" We also had a fun time introducing "Rona" to 262 watts for 40 minutes yesterday. That and the weight session just dusted her ass.

"Rona" said, "You wouldn't dare get into a cold shower while I'm here.

Me and the body said, "Oh, just watch "Rona" you are going to love all those feel good endorphins the brain releases (like serotonin, dopamine, canabanoids, opiates, and other enzymes that are released that create and anti-oxidized environment and bring inflammation down!"

Turns out, "Rona" didn't much like that either. But, ya know she did me dirty and me and this form feel she needed learn what happens when you don't care what you do to an environment you come into, uninvited.

So, Miss "Rona" has taken her leave. However, now the collateral damage. I feel very certain the 40% of my WBC's I have left after taking an immunosuppressant for all these years did exactly what they were supposed to do. I do not think there is ANY new lesion or MS activity.

BUT, I am now concerned about how many of my t-cells I have left after this battle.

Common colds and other flu's won't tank me too bad. But, "Rona's" a different story. She's known to tank WBC's even in folks who are not on any kind of immunosuppressant. So, a blood test will be needed, pronto.

Most of us can operate fine on 40% of our immune system. But, I do actually need some t-cells in order to fend off just the common stuff. So, we shall see what happens.

It's all good...Have a blessed and healthy day, Everyone! Cheers to conquering my first "Rona" battle. :-)

Weight:	Lost so far:	Still to go:	Diet followed:
53.5 kg	41.7 kg	0 kg	Reasonably Well

(20 comments) Losing 1.9 kg a Week

10 May 2024

First weigh in for a while. I wasn’t going to because I’ve been on all kinds of meds since being sick 🤧 Tylenol, ibuprofen, mucinex, allergy meds. And all of these will increase water retention. So it’s possible I’m less than this - but for the time being this weigh in works for me! lol

Weight:	Lost so far:	Still to go:	Diet followed:
53.8 kg	41.5 kg	0 kg	Reasonably Well

(1 comment) steady weight

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