On second thought….

About a week ago, I wrote a post called “saying goodbye“. My credit card was billed $94.00 for a word press subscription that I wasn’t using, so I figured it was a good time to cancel. After posting said post, several of the friends I have made on WP advised me that WP had free version and I would only need to pay $18.00 a year to keep my domain name msgracefulnot.com. Hmmm ok that I could do, so I took down the Saying goodbye post, cancelled the paid subscription, and here I am.

Thank you again to those of you that reached out to me!!!!!

Why I stopped using Word press

For the greater part of last year, I made the conscious choice to avoid social media as much as possible. My personal plate was full and I couldn’t deal with all the negativity, fear, and hate being passed around between people. I saw sides of people that I could not imagine they were capable of, so after writing, Say what you mean, and mean what you say, I pretty much “disappeared.”

When I created my blog, my original intention was to provide PROOF that with the right amount of determination, creativity, and humor you can survive almost anything.  I wanted to help anyone that was feeling alone or overwhelmed with their lives, to see that they were not alone.  I believe that on many occasions I did that.

1. I have written about  being diagnosed with Multiple Sclerosis. 
2. I’ve written about choosing a disease modifying therapy.
3. I’ve written about how insurance companies like to “play doctor”.
4. I’ve written about my children and not winning the mother of the year award.
5. I’ve talked about air travel with MS.
6. I’ve talked about Train travel in a wheelchair.  and the importance of knowing your equipment and your limits.
7. I’ve talked about being full of shit.
8. I’ve shared some of the treatments for bladder incontinence and urge incontinence due to MS.
9. I’ve shared some of my most painful moments.  (Mentally and physically)
10. I’ve shared some of my happiest moments.

I mentioned earlier that I’ve had a full plate this year, but I’ve not been at all specific. There are multiple reasons for this.

In some instances, the stories I want to share, are not entirely mine to tell. For example, both of my parents are going through life changing medical issues. I can tell you how it’s been affecting me, but I’m not sure how much is TOO much to share. I’m still working on this.

Another reason for the vagueness is because the “jury is still out” about many of my health issues. While I can share what I have been experiencing, and why I’ve been doing what I have been doing, I still don’t know if my decisions were the right ones to make, so I don’t want to lead anyone astray if they are dealing with anything similar. I will work on this as well.

In the meantime, I would like to reintroduce myself, and invite you back into my world. If you are joining me for the first time, my About Me page, is a good place to start. (I wrote it a year ago, but I believe most things still apply.)

When I thought I was leaving wordpress, I was trying to think of a way to “go out with a bang.” I began creating a “contest” to attempt to draw everyone in, one more time. It has occurred to me, that I can use the same contest to “Come in with a bang”, or “get back in the saddle if you will.” Giving away prizes, opens the door to discussing some of the positive things that I have been doing over the last year as well.

On Wednesday, September 2nd at 9 am Central Time, I will post a list of questions about myself, or things I have written about in this blog. I do believe that most of the questions can be answered by reading the posts that I have linked above. (if not THESE posts specifically, the answers will still be available within my website) The prizes will go to the first two people that post the most correct answers to my questions in the post “How graceful are you?” in the comments section of that post no earlier than Monday September 7th @ 9 am central time and no later than 3 pm Central time of the same day.

I hope you will all participate. See you soon!

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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.

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.

 

 

 

 

 

 

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

“Helping” with the yard work

 

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.

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.”  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

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! 😛

Before 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!

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.

 

 

 

 

There 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!!!!!!!

 

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.

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