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.

 

 

3 Broken Bones and a Lisfranc Injury

Last year I told you I had another WTF moment.  No surprise there, I’m sure. When I left the Immediate Care, they told me that I had broken two bones in my foot and would need to follow up with the orthopedic surgeon the following week.

On Monday,  I saw the KNEE surgeon.  (remember I had knee surgery the previous week) He said while they were able to do the Meniscous repair and “clean up” a bit inside of my knee, they were still recommending a partial knee replacement once I healed from my newest injury…smh

On Thursday, I saw the Foot Surgeon.  When he came into the room, he shook his head saying, “Well Grace, you really did a number on yourself this time”.

and then he said nothing and still nothing.

He stood there and continued to shake his head.  I’m not sure what the actual pose is called, but you know when someone is deep in thought and they almost rest their chin on their hand, slightly covering their mouth?  Well that’s the pose and the longer he had it, the more nervous I got.

Finally he sat down next to me and said, “Well you’ve got some options.  You have 4 broken bones and may have a torn ligament.  If we go in for surgery right now, I will have to place a plate and screws in each of the bones you’ve broken.”

Now it was my turn to be silent.

Holy shit!  No! No! No!  A million thoughts ran through my head mostly about all of the plans I had for the holidays.  I couldn’t wait to see the twins opening their presents on Xmas.  Thing 2 had just gotten a puppy and I was looking forward to training her.  etc etc

When I finally spoke it was to say, “This can’t be happening!”  Einstein quickly chimed in with, “Oh, it’s happening sweetheart”. (from the state farm JACKED UP commercial)

I pleaded, “But you said I have options right”?!?!?!

After much discussion, we decided to continue with R.I.C.E to allow the swelling to go down and to allow me some time to absorb all that he had told me.  I left his office that day in an orange split cast with instructions to stay in bed for the next two weeks with my foot elevated above my heart and the Ice machine continuously running on my knee.

leg above your head (7)

While laying in bed, I spent TOO much time on Google, researching the various options that might be possible.

 

 

 

Since that first day, I have been back to be recasted 4 times. I am currently sporting the ‘sexy’ black one.

There is still a lot of swelling, I’m not spending all my time in bed anymore though either.  The current plan is to remain in this cast until the 30th (unless the swelling continues to go down) Then evaluate the extent of the lisfranc injuries to determine the next step.  Hopefully the 2nd, 3rd, and 4th Metatarsals have begun to heal by then.

Some positive notes

  1.  amputation is not an option
  2. I have time to blog and catch up reading everyone I missed
  3. I am getting great upper body strength while using the wheelchair
  4. I have mastered getting 1/2 in and out of the tub without getting the cast wet, though not without making a bit of a mess.

beautiful tubs

 

 

 

 

 

 

Time of Death 10:30 pm 06/15/2019

I don’t know if you remember, back in March of this year, we received the devastating news that Snuff had Hemangiosarcoma CANCER.  The vet performed surgery to remove her ruptured spleen, but the cancer had spread too far.  The vet said that we would lose her within the next few months.

While I am grateful that I had 3 more months with her, THEY WEREN’T ENOUGH.!!!!

Snuff took her last breath at 10:30 pm on Saturday.

As I looked at this “collection” of the snuff’s things this morning, thinking this is all I have left of her, I realized that I was wrong.  My heart is full of love for her, my brain full of memories.

So now Snuff is gone, but she will NEVER be forgotten!!!!!!!

So many road trips together

personality

“Helping” with the yard work

head cock 2

 

So

Much

Personality

 

 

 

 

 

 

 

 

 

 

 

Snuff,

I hope you know that it goes without saying that I would hold onto your forever if I could.  Watching you these last few days, I know the time has come that I have to let you go.  I can’t watch you struggle to rise each time I leave the room.    I feel that you are only holding on to make sure that we are ok.  We aren’t.  It hurts like hell, but worrying about you being pain hurts more.

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Though you will no longer be by our sides, you will forever be in our hearts.

 

Rest in Peace MY GIRL

Laughter is the BEST Medicine

Yesterday I let pain and confusion cloud and take over my judgment and mood.  I was so focused on what I couldn’t do that I forgot to use all the powerful tools I have at my disposal…..the biggest of which is the ability to laugh at myself.

I want to share some things with you that I hope will make you laugh, smile, or at the very least shake your head.

I wrote before about all the prep work you should do before surgery,  While I was getting groceries …….. a woman walked up to me and said, “Excuse me ma’am. I hate to tell you this, but your boots don’t match.” your boots dont match.jpg She was right.  I have no fashion sense.  It made me laugh.  Thank you random friendly stranger.  🙂

I was also racing around to make sure my house was clean, nothing to impede my movements in a wheelchair, etc.  I lost my balance, tripped, or something and came down hard ON MY GOOD leg….smh

20180903_191007

When I was trying to pull myself up (very difficult with the stupid boot on) I again lost my balance and hit my eye on the counter giving myself a black eye.  I swear you can’t make this shit up!!!!  I can only imagine what I looked like when I walked into the surgery center.

 

 

After surgery, when my dad was telling me what the doctor said and did, he told me and I quote, “So the doctor took off your big toe, reamed holes in your foot and then your toe, they put in a stud and then screwed your big toe back on”.  I was horrified, but I believed him. That is SO NOT what they did!!!!!  The sad thing is, when I was explaining to a couple of friends what the surgery was for, I told them exactly what my dad had said.  If they were laughing at me they didn’t let it show…..SMH….. I hope my father remembers he will be having his other shoulder replaced next year and karma is a bitch! 😛

plateBefore I continue, I THINK this is what they DID do to my foot.  Again, I won’t really know for sure until I follow up on Thursday.  I will try to take a picture also, but I have a tendency to pass out or get sick when I see or feel pain.

Ok so now let’s talk about hindsight being 20/20.  Before surgery, I wrote about “practicing” for recovery.  I went through my entire house with the wheelchair making sure it fight everywhere I would need to go.  I FORGOT that I would have a leg support on the right side of the wheelchair which adds almost 3 feet to your turning radius.  DOH!

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This has come in handy though for getting my dogs to move out of the way.  Poor things haven’t left my side since surgery.

20180906_083000

 

 

 

 

20180908_122505There was also this ONE time, I forgot the catheter bag was hanging under the wheelchair when I was trying to transfer back to my bed.  I only forgot ONE time, and I don’t know if I will ever find it funny, but I don’t mind if you do.

 

I’d like to share a couple more pictures, but first I need to thank everyone for all your thoughts, well wishes, moral support and encouragement, and a special thanks to my dear friend Jeri for the 4 containers of ice cream you delivered!!!!!!!

swollen

 

This picture is from this morning, and although, it looks kind of gross, the swelling has gone down tremendously from the first couple days, and I do have faith that there are better days ahead.  BABY STEPS!!! literally with my GIANT boot.

Chris and Tom commented earlier about signing my cast.  I am not that technologically oriented to figure out how, but if you can feel free…. It’s a great reminder that I am not alone 🙂

My best friend Gary virtually signed my cast from my wrist surgery a couple years ago.

tiggerifficI hope you all have a great weekend!!!!!!

20180908_132453

Stranger on the plane

As I wrote yesterday or the day before (damn the last week is a blur), I was pretty paranoid about leaving vegas after what happened last time I said goodbye to a friend.  All the bullshit I went through at the airport in Houston to get to vegas, had me dreading the trip even more.  (another story for another time)

As I walked through the door of the airport, a sudden calm washed over me.  Maybe it was the xanax kicking in, maybe it was that I was going to home to see girls, I honestly don’t know what it was.  Maybe it was exhaustion?  Either way I had not a care in the world.  I didn’t take more than 10 steps into the door before I found a porter ready and waiting with a wheelchair for me.  When I showed him the boarding pass on my phone I realized I was in seat 8F  ( yah window seat….maybe I could sleep?).

I barely remember that pat down, even though the foley catheter (who’s name is boppy, for bag of pee) set off the metal wand, I really don’t remember much about it.  We stopped for coffee and I was deposited at the gate.

I was the first to board the plane (after the pilot and flight attendants.)  The agent that took me to the plane even stashed my bag overhead for me.  I balled up my sweatshirt and laid my head on it closing my eyes to let the world drift away.  I couldn’t have slept more than a few minutes, before being awaken by this sight.flight home (9)

Meet Timmy

Timmy is the service dog for my new friend Bob…… Bob has Retinitis Pigmentosa, and is going blind, or as doctors have told him, he should have been completely blind years ago.  But I am getting ahead of myself, let me take a few steps back.

So I open my eyes, see this beautiful patient dog looking at me and let my eyes wonder up the harness to the man holding it.  He asks, “Are you ok with dogs?”…. I kind of shook my head and muttered, “um yeah, but where is he going to sit?”   thinking….Does he get a seat? are you putting a seat belt on him? is he going to sit on your lap?  The stranger responded, “oh he’s just going to sit down under our legs”   HUH?  (remember I have a German shepherd, who always TRIES to lay under my legs)…. Again, Ok.

Sure enough, Timmy laid under the seat in front of the stranger and between his legs.  As the other passengers finished boarding, the stranger allowed me to take several pictures, an introduce myself to Timmy.  At one point he said, I have RP and this is my service dog.  I actually knew what RP was…..well kind of, I knew how to say it, and that it meant he was going blind.  I think I surprised the hell out of him that I had heard of his condition.  You see, I follow and greatly admire the writer Susan Richardson, the author of Stories from the Edge of Blindness.  Susan has also been diagnosed and living with RP for 16 years.  If you don’t know Susan, please check out her blog, you won’t be sorry.

So back to the “stranger” on the plane, His name is Bob by the way, and by the end of the flight, he really was no stranger at all, but an incredible, smart, friendly guy.  We talked for the full four hours of our flight ( although it really felt much shorter than that)  We discussed politics.  yes I said discussed.  We disagreed about a few things, but I think we both LEARNED from each other.

When we were discussing how to find happiness while living with a health condition, he taught me a new term, “stamp collector” to describe a person that holds on to any and every misdeed that someone has done to  them.  We both agreed the secret to happiness is NOT collecting stamps, both literally and figuratively.

I could go on and on about the things we talked about, but I guess the whole point of this post, is that I am glad a “stranger” took a chance to open up about themselves and took the time to listen to another stranger’s stories and opinions.

I’m not a religious person by any means, but I do feel like I was “blessed” that day on my way home, and I am grateful for it.  I am also very grateful to have met so many wonderful new friends here on the interwebz.  Sincerely, I Thank you all from the bottom of my broken heart.

Soon, I’m going to have to tell you all about my Best Friend Gary, (the reason I went to Vegas), and about all the things he did to keep my mind occupied while I was there.  I really am a lucky girl.  For now though, I have the pleasure of Dutch’s company while Dan’s family finds a new home back in Illinois.

dutch

Is it a guy thing or a puppy thing that makes them take EVERY toy out of the bin?!?!?  lol