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.

 

 

Bathroom issues of a new variety…

If you have spent ANY time around me, you know that I have many, many bathroom issues/stories.

I ALWAYS have to know where all the bathrooms are everywhere.

I may not be able to tell you the name of the street we are on, but I can almost guarantee you that I can tell you the names of most of the businesses that have a public restroom AND where it is located.

I’ve made friends in bathrooms.

I’ve been in a couple of fights in bathrooms.

I’ve also broken up fights in bathrooms.

I’ve ….maybe you don’t need to know EVERYTHING I’ve done in the bathroom.

Anyway,  I’d like to tell you about my latest ‘bathroom adventure’ for no reason other than I hope to make you smile, maybe even chuckle a little.

Setting the stage:

Inked0131201233b_LI

 

As you may know I am current in a wheelchair.

Because it is hopefully not a permanent situation, I have been lax about buying or building a Ramp to cross the 3 inch drop into my bathroom.

 

0131201231b

As you can see, the toilet is a long long way from the door.

In the beginning of my “adaptation”, I would park my wheelchair at the door, then use crutches to make it across the floor to the toilet.

That worked fine until the one day, I slipped….

(I’ve fallen and I  can’t get up)

So NOW I have a second wheelchair parked IN the bathroom.

 

 

To recap, I wheel my primary chair to the door.

0131201231a

 

I Carefully put on the wheelchair brakes and switch to the 2nd wheelchair, and go from there.  ( Yes there is a story in there too, but I digress)

Simple enough right?

 

Sure……….. until you add more characters to the story.

0122201842a

The other day, I was playing with my grandsons in the living room, when my body decided it URGENTLY needed to use the facilities.  I quickly wheeled to the bathroom, did the quick wheelchair swap, and made it to the toilet, JUST IN TIME.

As I let out the breath I had been holding I hear 2 sets of pitter patter coming my way.  Oh shit, the boys don’t know how to do steps yet and I know from past experience NOTHING will keep them away from Grandma.

0131201233b

Danny was the first to navigate around the wheelchair and promptly FACE PLANT onto the floor.  OH the SCREAMING!  Which immediately caused Joey to begin Wailing as well, even though he hadn’t even attempted he step yet.

From where I was sitting, (literally) there did not appear to be any blood, but I couldn’t move to be sure.  I needed to coax them both into coming in further.

Travel size Kleenex packages to the rescue!  I quickly tore open an 8 pack that lives in a box next to my “throne”, and began crinkling the packages.  Thankfully THAT, and a drawer full of pads did it!

While I was examining Danny’s face for injury, he decided that he also wanted to be on the throne, as did his brother.

0122201845a

Quite the family affair, don’t you think?

As we all SAT there, I was so grateful that my bathroom was one of the first rooms I baby-proofed. Although it wasn’t the most thorough cleaning ever, I was able to swifer the bathroom floor before the boys came.

I feel like I should put in a disclaimer here that unlike my story So I did a thing, where I glued myself to the bathroom floor, no one was actually injured during the making of this story.  SMH

Thank you for taking the time to stop by today.  Hopefully I made you chuckle a bit, or at the very least smile.

 

Are you ready to live?

A couple of weeks ago, I shared some admittedly pretty scary information with you in my post, “Are you prepared to Die“?

I’ve spent a lot of time thinking, reading, and otherwise researching what my next steps should be.  While doing this, I have created two more quandaries for myself.  The first being not knowing who or what to believe.  People that claim to be specialists tout one thing, while other people claiming to be specialists tout the exact opposite.  You also have your everyday ‘average people’, also equally divided, demanding with as much fervor as two rivals debating politics that they have the answer.  (They must, they live with it everyday)?????  I find that I am overwhelmed not only with all the information available, but also by verifying the ‘credentials’ of the sources.

I’m going to table this quandary for now because I honestly feel like I am playing Russian Roulette.

The other decision that is plaguing me is, “Am I prepared to live?”    You’re probably thinking, “OF COURSE YOU ARE!!!”  At first it seems like a no-brainer doesn’t it?  Well duh, of course you want to live!!!  But is it really that simple?

Let’s say your doctor tells you that in order to live you have to murder, and eat someone once a week.  Apparently, the nutrients in another human would allow you to not only be disease free for a week, but they would return you to a more ‘youthful’ state with unlimited energy etc.  While some people may feel that this would be acceptable to them, for me it’s a deal breaker.  I would probably go so far as to purposely end my life to prevent some well meaning person from TRYING to save me.

I know that my example sounds extreme, but as a “professional addict” I assure you it’s not.  Do you know that smoking can kill you?  I still smoke.  Being overweight can also kill you, yet I won’t turn down cheesecake. etc etc…In addition to taking away those vices, you should change the things you eat.  Yes take away the things you enjoy, and ADD eating dirt (the food you most abhor) or  only being allowed to eat something that someone else has chewed up and spit out.

I am purposefully being facetious because what one person finds an acceptable another would NEVER do,  and I’m trying to make a point.  DECIDING TO LIVE takes a lot of work.  It requires many changes and some sacrifices. while at the same time knowing that you are going to die at some point anyway.  Up the ante by adding the FACT that there is no guarantee these changes will help, they may even make you sicker.

But it worked for my neighbor’s sister’s third cousin once removed’s dog?!?!?!? 

All sarcasm aside, I am beginning to accept the fact that in order to continue living, I have to make some serious changes in my life.  None of them are appealing to me, but I find I’m not quite ready to die.  I’m not prepared to swear to a course of action yet, but I have begun making changes. I reduced the number of cigarettes I smoke from more than a pack a day to 2 cigarettes a day.  I have been tracking everything that goes into and out of my body. ( I promised no more sarcasm today so I will just leave that one alone for now)  I have been investigating 4 MS drugs that I have been introduced since I began TYSABRI.  To be honest, the side effects of all of them are scary as hell so discontinuing any disease modifying treatment is also on the table.

It’s very dangerous for me to “get all lost in my mind”, so if you are willing please take a minute to share something you have struggled with or are struggling with and how you are working to overcome it.  It helps so much to know that we are not alone.

They call it the flu.. I call it fucking life up

I’ve been through a lot in my life, is it possible that I have never had the flu before?!?!  Maybe I caught some special breed of this monster?  Whatever the hell you call it, it seriously fucked me up.

As many of you know, Thing 1 Got married on March 10th.  We went out of town for her wedding on the 9th, and from the moment we walked out the door the entire weekend was MAGICAL! (I have pictures and video to prove it!) Literally EVERYTHING was perfect.

At 6 am on March 11th, I closed the door to our hotel suite saying goodnight to the last “after party” guest.  I climbed into bed next to Einstein and smiled.  Our princess really was a princess!!!!  What a wonderful weekend!

Did you know that today is March 20th?  Trust me it is!  ( I have checked the TV, the Computer, and my phone 3 times)  How the hell did this happen?!?!  10 days!!! I have “missed” 10 days!!!!  Where the hell have I been?!?!?

Again, they call it the FLU.  Oh I’ve got some words for it, but autocorrect keeps changing what I say into “#$^$#^@#$(%$)”  I keep trying to fill in the ” missing pieces”, but I can’t believe it’s been 10 days.  Where the hell have I been for 10 days?!?!?

The answer is Horizontal. Drugged, in a daze etc.  Apparently, I caught the flu and it literally kicked my ass or fucked life up.  I remember arguing with Thing 2 about going to the Emergency Room.  (In hindsight, Never have I been so grateful that she doesn’t take no for an answer.)  The fever that I had been fighting reached 104, my oxygen sats were in the 80’s, and I got dehydrated.  I’m home again and I today I am vertical, but that’s all I’ve got for now.  I have a feeling this is gonna be a long road.