Life…Interrupted

Ok, Ok, Ok….this virus things has officially kept me up tonight. It’s 2:30am and I wish I had slept. I have always been the believer in I’m going on with my life or else I don’t have a life. I figured I pushed through enough crap in life and I just keep pushing. But this is different. Things have changed and having a flippant attitude towards this Covid-19 is just not gonna cut it.

Ill be the first one to admit that abut 3 weeks ago I said no big deal, sure people here will get sick, but how bad could it be? Well, i guess bad enough where life is grinding to a halt. I have very mixed emotions about that. We as a country have been through some crazy and scary shit. No need to list them. So it doesn’t even seem real when I hear to shelter in place over a virus, a terrorist attack yes, but a virus?

With quite literally 24 hour news coverage, daily 2-3 hour briefings from the Governor, and now countless businesses shutting their doors, I feel like this is a terrorist attack……Oh yes, not to mention my 8 year old daughter being homeschooled by yours truly. Come to think of it, just that is giving me anxiety. After all, its only the foundation of knowledge I am attempting to lay down with no experience teaching kids. I was a corporate trainer for 5 years and I dealt with adults who to be quite honest acted like children on occasion.

I take things seriously now for the following reasons (and I think its good I list them as a reminder that there can be a lot at stake).

1. I have a beautiful daughter I have to protect.

2. I have an elderly mom I have to protect.

3. My husband comes into contact with people from all over the state on a daily basis, and I want to protect him.

4. I myself have an auto immune disease. Plus I am currently in between DMTs. I was on Tysabri, became JCV positive, and my MS Doctor recommenced Ocrevus. I haven’t had an infusion since mid January and I’m starting to feel it. Ocrevus is also an immunosuppressant. So as many compromised people feel, I’m not into crowds, never was.

Now I worry more about everything and I am clearly having some anxiety problems combined with insomnia. The “what-ifs” keep rolling through my brain. I have ordered everything imaginable from online stores to be prepared and yet I still say t myself, is that enough? Three weeks ago, I was thinking about buying a really nice and expensive handbag ( for once in my life), now i worry if I spent enough on non dairy creamers! Who am I?? I’m almost feeling like a doomsday prepper!!!

Life is to be enjoyed, Life is to be lived. Life is to be full of love and incredible experiences. Life is being with friends and family, not ‘social distancing” from them.

Now we have life full of fear and anxiety. Life is standing on lines to get toilet paper. Life is wondering if your gonna lose your job. Life is feeling like a hypochondriac. Life is sanitizing your hands till your skin falls apart. But mostly life is being scared to death that someone you love becomes ill and begins the fight of their lives.

When will it be over? And there is no doubt it will be over. I just wonder about the effects of this moment in time. How do we get back on track and start doing the things we love again?. How do we pick up where we left off before Life, Interrupted.

The Complain Train Has Left The Station…..

Ok, I have been on the complain train for a bit too long, but this by far has been my version of the bodily train wreck. My body, almost all at once has given me the swift kick in the ass whether I needed it or not. So, fasten your seatbelts cause your about to board the complain train, destination unknown.

First stop, a little known town known as plantar fasciitis . A painful stop in this journey. I noticed about a month or so ago on and off left heel pain and burning, but not all the time. Mind you, I already have an issue with my left foot involving the fifth metatarsal that has caused it to drop and produce a painful callous, pretty gross right? This nasty callous makes it almost impossible to walk barefoot and I wear almost exclusively Skechers because of the memory foam. So back to the heel pain, wow has it exploded. The pain is unreal especially after I’m off my foot for while. The first few steps in the morning I compare to walking on hot coals (although I really wouldn’t know that for sure). The pain by the end of the days is excruciating and no pain meds seem to help, so I use a lot of freezer packs and bags of frozen peas, End result, off to the podiatrist and see what he can do.

Second stop on this journey is a well know city called Impacted, as in I have a very painful failed root canal that is also impacted. So not only is walking a challenge, but so is eating. I am in this moment awaiting clearance from my Primary doctor and I also needed it from my MS doctor to be IV sedated. Oh yes, knock me out! I’m not suffering anymore than I have to. But, my gosh, that pain and swelling is no joke either, again, I think my body is tying to get my attention, I am happy to report that my MS doctor has cleared me, but it wasn’t all good news. Which leads me to my next stop.

This stop I have to admit, is the derailment of this train. The very very unexpected news from my MS doctor, actually the nurse. So as she was asking some basic question, she told me they were going to clear me for oral surgery, good, wonderful. Then she hit me with the info that threw me….My JCV blood test came back positive, then she gave me the number 3.78. I almost didn’t comprehend her words. I have been on Tysabri successfully for three years and to this point tested negative with values that actually continued to decline. My last blood test in September showed my negative value was .06. What happened?!

As you could imagine, my head is still spinning. Tysabri is an excellent course of treatment that I was fortunate to tolerate well. I was told before using the medicine that there is a risk of PML, which is why your blood is tested every 3-6 months for the John Cunningham Virus. This is a virus very common in everyone but lays dormant in most. In people with various autoimmune diseases and people using Tysabri, the immune system is compromised or suppressed. JCV is a virus of opportunity taking hold when it finds the right time. Problem is this nasty little virus can lead to PML (the whole word is too long to write at 5am).

The JC Virus is able to break the blood brain barrier which then could lead to PML, which is often times the damage is irreversible to the brain and can also be fatal. Now I do understand that just because I have tested positive for JCV DOES NOT mean I will develop PML. I won’t lie, its on my mind.

Now I have yet another doctor’s appointment, this one is critical to me. I have so many questions about what treatment is next, how long do I stay positive for this virus, what should I watch for? It’s endless because now I am almost, but not quite scared. Fixing a tooth or fixing a foot is an easy process compared to modifying the progression of Multiple Sclerosis.

Although thats the end of the complain train ride, my journey has just begun. I’m back at square one with my MS treatment and I am feeling the affects of Tysabri leaving my system, which is fatigue and a little extra in the mood department. When I sit back and absorb all this I just say, ok, lets address one thing at a time, but its so much more than that. Again, its as if my body is rebelling, and in a sense it is. It’s saying no more Tysabri, go have your tooth pulled, and by the way, fix your foot.

Ok body, you got my attention, I’m listening.

US Pain Foundation

This is a quick video montage of 2019 year in review. I am honored to be part of it. I worked with my town to declare September Pain Awareness Month and I told my own, very personal pain story.

I enjoy being an Ambassador and I intend to do a lot more in 2020.

The US Pain Foundation is always looking for volunteers to spread the word that we are here and we can make a difference!!!

www.youtube.com/watch

Woman with chronic pain gets hateful note for parking in handicap spot | KTUL

There are a lot of things in this world that upset me.

This ranks by far number one!

I have yet to come across a note on my car, but I have been confronted by a person who felt I didn’t deserve a handicap tag. This has to stop!!

SKIATOOK, Okla. (KTUL) — We all want to be treated with respect and a little human decency, But that wasn’t the case for one woman, who says she got a hateful note because a stranger jumped to conclusions. Now, she’s sharing her message that what’s on the outside, isn’t the full story. Ashley Sartin works at a dispensary in Skiatook. It’s her first job in three years. “I have CRPS, complex regional pain syndrome,” she said.
— Read on ktul.com/news/local/woman-with-chronic-pain-gets-hateful-note-for-parking-in-handicap-spot