What the hell was I thinking?

DO NOT SCHEDULE 2 MRI’S ON THE SAME DAY!!!!!

I know better!  I’ve even written about it in…. Not the Tube.   Of course, I didn’t listen to myself. SMH  Then again, when I do listen to myself, I often make bad decisions.  When your done reading and or watching please share your opinion about whether YOU think I should listen to myself.  I’m pretty sure the answer is not a simple Yes or no.

Ok, so my dumb ass not only scheduled two MRI’s for the same day, but I also attempted to do it drug free.  I will NOT be doing that again!  In fact, I’m pretty sure the hospital put a great big caution sign in my chart saying that I have to be sedated. SMH again

Thing 2 picked me up on Friday and drove me to the hospital for the procedures.  I found that she REALLY enjoys pushing me in the wheelchair.  ( into the curb, into the wall etc)  I went through my 200 question checklist about whether I had metal implants, tattoos, etc in or on my body and was surprisingly ok’d to get in the tube.  Then the nurse asked if I was claustrophobic.  Um yeah….”OH SHIT, how had I forgotten to take the medication?!!??!?”  She told me they could reschedule the MRI, or I could take the medication and wait 45 minutes for the medication to take effect.

I TOLD her I would be fine as long as the tech talked to me between pictures.  SHIT SHIT SHIT!  As she wheeled me to the dressing room to change into the scrubs they provide, I could feel my anxiety increasing, and discreetly slipped a xanax into my mouth. Work work work!

The MRI tech was back within moments to take me to the MRI room.  I’m sure the terror I was feeling (yes terror) showed on my face when he also asked me if I was claustrophobic, but I also told him I would be “ok” as long as he talked to me between pictures.  (I told him all 5x that he asked me)

I wasn’t ok.  I freaked out!  I pushed the panic button before the first set of pictures where complete.  I passed out before he pulled me out of the machine, and vomited on the floor as soon as I came to. SMH again.

Fortunately, the MRI department was very forgiving and not busy that day.  They cleaned my mess, and allowed me to clean myself up.  They told me if I wanted to take medication I still could, but I would have to wait 45 minutes for it to take effect before we could try again.  Perfect! I thought.  I would probably only need another 25 minutes to be “calmer” since I had already taken one, but the least I could do was wait 45 minutes after the ordeal I caused.  Unfortunately, they needed to see me take the medication.  Ah fuck!

Um OK.  I do know that I CAN take two pills, as I have previously been prescribed a higher dose, but I also know that it pretty much puts me ‘out’ for the evening.  So OF COURSE, I made Bad decision number 3, (if you’re counting) and took the pill.  While waiting to retry the MRI, I noticed an empty wheelchair in the hallway, and asked Thing 2 if she would like to have a race or 2.

We did.  Here is the video to the only race I may have won (my foot dropped and I think I may have pushed off).  Wheelchair race  After several races, (I encouraged other patients and visitors to get involved as well)  I did survive the two MRI’s to test for PML and am waiting to hear the results.

So what’s your opinion?  Should I listen to myself or not? 😉

It’s my party and I’ll cry if I want to

The other day, my Best friend Gary and I had our overdue ‘catch up’ conversation. I’m not sure if I have said this before, but Gary lives halfway across the country and most of our time spent together is on video chats.  Our friendship began in a facebook group about Tysabri, and has continued for more than 10 years.

During our “catch up call”, after we talked about each of our grandkids and our children, the subject of my health, more specifically two of my recent posts, Are you prepared to Die? and Are you ready to Live?,  came up. While Gary understands my fears, he is concerned that I may have scared other people (especially those newly diagnosed with Multiple Sclerosis.)  He feels that someone reading my posts may feel that because they have ms, they will die.  I quickly argued that I only wrote the truth.  I never said that MS kills people.  (At least I didn’t think that I did.)  I AM SCARED!  I don’t like my choices.  I honestly feel that I am playing Russian Roulette and I am MAD!  BUT, None of that excuses the fact that he may be correct.

Before  I continue today…..

I want to apologize if I have mislead anyone, making them believe that being diagnosed with MS is an automatic death sentence.  While I feel that this may have been true many years ago, medical advancements and scientific research have made LIVING with MS much more manageable.  However, I promised myself when I began writing this blog that all of my posts would be honest, no matter how embarrassing or unpleasant they may be.  I would talk about the uncomfortable parts of MS in addition to sharing tools that I have found to make living with this MONSTER a little easier. I believe that 80% of the time, I prove in my writing that laughter IS the best tool I have for managing living with MS and the many other injuries I frequently obtain.

Today however is not that day.  Today I am angry!  I am angry because even though we can try to take steps to live more comfortably and possibly slow disease progression, the disease ultimately has control.  In the post “are you ready to live“, I said that I would be doing more research into the newer MS drugs available and I have.  When I am done VENTING here, I will share my latest conversation with my MS specialist about my concerns and my next steps.

But first please take a walk or a read with me, and see my fears through my eyes

First drug on the table…. OCREVUS  (the full list of potential side effects can be found here.)

What sticks out to me are these words…

OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections.

Progressive Multifocal Leukoencephalopathy (PML): Although no cases have been seen with OCREVUS treatment in clinical trials, PML may happen with OCREVUS. PML is a rare brain infection that usually leads to death or severe disability.  ( remember this is the reason I am being urged to stop Tysabri)

and finally

OCREVUS may cause serious side effects, including:

  • Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer.

My brain does silly shit here.

Ok Cancer? …. Just keep having mammograms, if I get it, just get a boob job. (That’s what I did when I had cervical cancer)…. just take it out!!!!

PML, are you fucking kidding me?

and Herpes…hmm  How do you see this conversation going, “Um Einstein, would you care if I took a drug that could give us both herpes”?  Let me save that prospect for Valentine’s Day don’t you think?  Before I even talked to my doctor, sadly enough the deal breaker for this drug, was that Thing 1 said I wouldn’t be able to kiss my grandkids anymore.  “Mom you know that herpes can be lethal to babies right?”… um no I didn’t, in fact I don’t know much about it at all.

Next drug on the table, Aubagio (teriflunomide)

Severe liver injury including fatal liver failure has been reported in patients treated with leflunomide, which is indicated for rheumatoid arthritis. A similar risk would be expected for teriflunomide because recommended doses of teriflunomide and leflunomide result in a similar range of plasma concentrations of teriflunomide.

Hair Loss

Maybe I should be embarrassed that I wasn’t so worried about the fatal liver failure as I was about the hair loss,  but again I am being honest.  YES I know it sounds pretty vain.

My research of the above mentioned drugs, also talking to other patients that have previously been on Tysabri and switched to Ocrevus or Aubagio.  70% of the people I talked to regretted switching.  They stated that they immediately went downhill after the change.  I also discovered there are now several studies being conducted about The “Rebound Effect” after stopping Tysabri or the development of “IRIS” (Immune-reconstitution inflammation syndrome) which can also be fatal or cause rapid acceleration of disability.   Did I mention this news really made me angry?

Last week, I got the results of my JC virus retest back.  It was not a false positive. 😦  In fact it is a pretty high positive.  I sent my doctor an email to discuss the information I had been hearing/reading, and asked him to call me back.  When he called, the first thing he said to me was, “I don’t believe you have PML and just because you are high JC, also does not guarantee you will get PML but it greatly increases your odds”.  I shared my concerns about changing drugs with him.  He did chuckle when he responded that Ocrevus does not cause a sexually transmitted disease, or breast cancer.  The herpes virus that they are speaking of is shingles…EWWWW I had chicken pox at 25 and was hospitalized because of the fever and hallucinations.  I hear shingles are many times worse.  He also explained that Ocrevus does severely weaken your immune system though making you more susceptible to cancers and other infections.  The final concern with this drug is that it does not provide the “energy burst” that you get after receiving Tysabri.  Often times it causes the exact opposite effect.  😦

Next we discussed Aubagio.  He feels that not only does the drug not possess the strength of even the previous MS drug I was on. (that didn’t work) but also because it is a pill, my body may not respond to it because I also have Gastroparesis.  How did I forget about that?!?!?

Well crap there goes the next drug I had started reading about, Mavenclad.  SMH.

BUT, There is another up and coming drug for MS (not yet named) that is delivered in the form of a monthly shot. That may be something to consider.

The doc, I call him the wizard, and I decided that I should still have new MRI’s done to rule out PML. At the very least, this will give me a new baseline for the activity of my disease.  He has also ordered all of the blood tests required for each of the drugs I was considering to see if I am even eligible.  For now, I am going to stretch out the time between my Tysabri infusions to every 6 weeks instead of every 4 while I make a rational, NOT angry decision.

The girls and I are going to a drug talk hosted by the makers of Ocrevus in the beginning of March.  If I do change drugs, it will probably be to this one.

I do realize that being angry doesn’t solve anything.  It won’t help me make a decision any quicker, and it won’t change the outcome of any decision.  But I am angry and it’s ok.  I do believe feeling anger AND talking about it is part of the process!

A little over a year ago, (maybe two years ago) I made two videos on Youtube.  One is My story about how I was diagnosed with ms, and the other is what I still feel is Good advice for someone that is newly diagnosed.  I went back and watched them the other day and they helped ‘calm me down’.  They also reminded me of what I have been through, and what I have survived.  If you are interested, please take a look but clicking on the above links.

 

 

Better than I was yesterday

I overthink!…. it’s true.  I OVERTHINK about EVERYTHING ALL the time!!!  So much so that I get lost in my brain playing devil’s advocate, trying to make sure I am seeing all sides of a situation.  I was in a funk this morning and couldn’t shake it,  I didn’t even have a known reason.  Then I turned on the camera, and started talking to myself.  I did a “brain dump”.

After making this video, before actually uploading it, I called a very wise, honest new friend of mine and asked him to help me “get out of my head”.  I felt like he listened to me ramble without judgment, and then I listened to him.  He gives good advice! Lots of advice, but good advice.  Thank you for that “Superman”!!!!

Anyway the moral of all of this, is that I want to be a better person.  I’m not saying that I am a bad person, but I want to be better than I was yesterday.  Sometimes I really hate that I overthink everything, but maybe its the overthinking that will get me there?

What started all of this…. I belong to many Facebook groups for people dealing with Chronic Illness, more specifically Multiple Sclerosis.  Yesterday in one of the groups someone posted a picture of a “nasty note” that was left on their car, saying something to the effect of “you don’t look sick, why are you taking a spot that someone who is sick needs?”  The note was much more harsh than that, but I think you get my point?  Anyway, the person posted the picture of the note saying, “because people suck”.  I assume she was hurt and just wanted to vent, and was looking for support.  Ok I get it…kind of….  What I don’t get though is why of the 409 emoji’s and comments that followed on the thread, I was one of the few that simply replied, “I am sorry that happened to you”.  People started sharing their own stories about how much people suck and the cocky comments they respond to people with like, “Well maybe I don’t look sick, but you don’t look stupid!”  (no offense, but after saying that and “showing your ass” to me, you kind of do)  Why does one wrong make a right?  Someone said or did something to hurt you and it’s automatically ok to hurt them back?!?!??!  I don’t get it.  Why not be better than them?  Why not be stronger than them?

What really set me off about the thread of comments, was one woman talking about how her 9 year old “told off” someone that confronted her when she was questioned for parking in the handicap spot.  Seriously?!~?~!?  Why didn’t she pull her child aside and say, “Some people just don’t get it”?  Why didn’t she take this as a learning opportunity for her child to NOT Be judgmental and filled with hate?  Why did no one in this thread, suggest that to her?  I chose not to comment on the thread further because I realize that I will not “fix” everyone.  Honestly, I don’t have the time or energy for that.  But I also know that I don’t want to feed into that either.

In the 20 years that I have lived with MS, and however many years I have used a handicap parking placard, I have been confronted numerous times both verbally and in writing that I don’t LOOK disabled. Shrug…. Ok?  Do you feel better after saying that to me?  I literally just shrug and walk away.  Sometimes I TRY to smile first, sometimes I don’t.  Again….SHRUG.  Occasionally, I will attempt to educate someone that not all disabilities are visible, but most of the time I smh and walk away.

People wonder why their is so much hate and anger in the world, yet they feed into it themselves.  I know that I will be confronted again, I can not control that, but I can control how I react to it. I CAN BE A BETTER ME!!!!

Here is another link to the video of my “brain dump” if you would care to watch.

Thank you again to “superman” for letting me unload this morning!.  Treadmill time.  Busy Busy weekend here.  I hope everyone is able to stay warm this weekend 🙂

The Morning After….”THE VIDEO”

Yesterday, I posted a video I did as a self challenge to put myself out there and face something I was terrified of.  I didn’t watch the video again until today and this morning “Pre-coffee” I made another one after I finished watching the first one.

For anyone wondering “Pre-coffee” should have a clinical definition and be categorized as some other kind of disease.  ( At least for me it is)  I am not a doctor, so I won’t attempt a clinical definition….. but picture this….

Or check out other pins I have collected .  If you have any to share, please add them too!!…But I digress….I wanted to share some things I have learned both about myself, and about making a video, just from doing that ONE VIDEO….. Caution though…the following video was made PRE-COFFEE. (ok while having the first cup or I wouldn’t have been able to turn on my computer)  But as usual I digress…

Here is my second video if you want to see

Other things I learned from making the video:

  1.  How to upload a video
  2. I really DO NOT Enunciate ( which is why I attempted to add captions) to this one… not perfect, it’s alot of work, but yah I learned something new.
  3. I HATE  the way I LOOK and SOUND precoffee
  4. My goofy first video encouraged someone that I consider a VERY SUCCESSFUL blogger to try something she has been putting off…. DOUBLE WIN!!!!
  5. I’m gonna keep “doing me”.  I know that If I did this or that when making a video, it would be more successful, but baby steps for now.
  6. Drink coffee before EVER attempting to blog or video

Ok Now I’m just rambling…. Thank you again to everyone that is following me on this adventure!!!! I am really enjoying it and learning lots of new things!!!!!

 

 

 

 

Feel the Fear and DO IT ANYWAY!!!!

Two months ago, I decided to start a blog…this entire post is about my experiences in the last two months as I have challenged myself to step out of my comfort zone.  (kind of like a roller coaster ride)

Today’s personal challenge was to make an unedited video and post it.  TBH,  I have been thinking about it for about a month now, and talking myself out of it for one reason or another……. but I finally jumped and did it.

Before you watch the video, if you choose to, let me again state that there is no real point to the video, except that I needed to challenge myself to do something I was afraid of and I did it and it didn’t kill me…..YET.… my stomach is still in knots….

I began my blog/ website (whatever the technical term is about 2 months ago.)  I originally had thoughts about writing about Multiple Sclerosis, but what did I want to write about?  That it sucks?  Yes it does!  Ok, so not that….

How do you make the most of your life in spite of having MS?   Better…maybe.   So I decided to start there.  Please keep in mind, I also just jumped into the blog thing.  I had never heard of wordpress, and while I have taken a couple classes in html programming, I have never put my knowledge into practice.  I created an account on wordpress.com, paid $8.00 a month upfront for a year and then my mind went completely blank.  Oh shit now what?  This was my first blog post. 

I laughed so hard that day.  I was proud of myself for FINALLY taking that first step.  It just felt good.  I  spent the next couple of weeks writing SOMETHING almost everyday, but I could never focus on just one subject, some posts were about MS, some were technology struggles as I continued to dig into blogging concepts, some were just random rants about life.

After being in the blogging world for about a month, I realized that what I was actually trying to do is to Put myself out there, and to connect with other people.  I have enjoyed chatting with other bloggers and hearing their struggles.  I have met other people that are living with autoimmune disorders and chronic illnesses, and learned how they deal with life on a day to day basis.  I’ve made new friendships with “millennials”, and I have learned alot about myself in the process.  Most importantly, I have learned that I want to learn everything about everything, and I need to slow down a bit.

I still don’t have a topic to blog about, or a niche, other than reaching out to people, talking about my life, and learning about others.  If any of that sounds cool to you, say hello, let’s talk and get to know each other.  I’ve put myself out there, as scary as it was, so now it’s your turn.  I don’t mean hey let’s talk on the phone everyday or anything, but I mean let’s talk…really talk about any and everything….ok well maybe not anything, but maybe you get my point…..

Ok so now for the infamous, Link to COMPLETELY POINTLESS FIRST VIDEO

Again, posting this was a personal challenge for me.  I can already think of 5,000 things I could have or should have done.  But there it is…..