Alright Mike’s bike

I’ve been riding somewhat lately, mostly with my neighbor. It’s a good thing – even when were all self isolated. What I’ve noticed most – aside from the usual self controll issues I’ve been dealing with – is my overall lack of balance on my bike. And how much my stamina has decreased. This is so horrible I’d curse only my on my worst enemy, but ya gotta have friends to have enemies. But I digress…

I made a pack with matt to ride up to wisconsin. Yeah. I’m actually looking forward to trying. Going to up the riding amount vastly. All while I try to maintain some semblance of self-control over my life. Wish me luck.

So far

I’ve managed to ride to stearns

But ive accomplished nothing with my bent 29er crank.

My goal for now

Is to get to Wisconsin and back by the end off fall/summer.

Baby steps

  1. Ride through stearns
  2. Fix my 29er

Omg people

my life is so screwed up. What did I do to deserve this? Nothing. Fate has decided to royally screw me over. In a way I could have never imagined. It’s all imagined, but damn, it feels real as can be. It sucks wholeheartedly.

I did nothing to deserve this immune system clusterfuck. What it has done to me is unfathomable. I’m not just talking about being retarded now, it has been a rollercoaster of emotional feelings. I’ll have to resort to an earlier post title: help me, I am in hell.

Help me. I am in hell.

Do NOT get MS. and dont hop on any drug bandwagns. I often wonder where id be if i just let it ride. probably bettter off than where im at now. It wasnt nown then, but the drug I was taking, Tysabri, has a REBOUND EFFECT. like life alterinng. life was good. Drugs were working. Little to no disease activity was going on. nothing seemed out of the blue. I was feeling good. it seemed to good to true. I was riiding my bke over 2,000 miles a year. I was losing weight. All was right with the world.

Until Valentines day of last year (2019). It all came crashing down. Hard. Spent nearly a month in the hospital. a few of them. NCH, rush, and Norhwestern (in the city). As it turns out, my immune system was wreaking havok on my Brain. Or destroying it. I have pictures.

The attack was horrible. It has left my mind in shambles. I’ve been trying to make Shelby proud. but I just dont seem to be able to come back from this horrible place in which I’ve ended up. HELP ME – I AM IN HELL.

More to come soon. I’ve got to check on this bloog more.

Too little

Too late.

I relapsed this passed week, pretty hard.

Spent the better part of the week in the hospital. It was pretty harsh. I would avoid spending the week in the hospital, if youre at all able.

Im not even sure where to go from here. 🙁


Specialty Pharmacy Called

And let me know they have my ocrevus.

Grand. Can I get it shipped to the hospital of my choice post haste?

No, they had to verify my insurance information before they could release it.

I should hear back from them on Thursday, if not Friday.

O M G W T F B B Q ? ! ? ! ? ! ?

This stuff better be worth it. Without the JCV/PML risk.

I’m passed the three month washout mark already, and I’ve been feeling rather stricken with MS as of late. Just send me what I need!

Today Marks

Three months without Tysabri.

I miss it.

Today is the day that I could go on Ocrevus. If the process was complete. Which it isn’t.

Reality Check

I had to visit the vampires today. They’re checking to see if I have hepatitis. I sure as hell better not!

But I understand the reason for the hep check. For the new medication to which I am switching. And it’s always nice to be sure. Though I’m 99.9% sure I don’t have hepatitis.

Back to the subject. Went to get my blood checked. Took it, that was fantastic. Or as good as a blood draw can be. NCH Lake Zurich treatment center was the bomb, figuratively. In and out fairly quickly. Went after the morning rush, before the lunch rush. Like I said, “fantastic as can be.”

I had to, unfortunately, call the nuero’s office to let them know I had my labs done. OMFG. What a hassle it must be for these people to answer calls from patient’s of the doctors for who they work. Sass and attitude is all I got from the person who answered my call until I asked, “Wow, bad day, huh?”

If you can’t be a decent person on the phone, you don’t deserve to be answering that phone.