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? 😉

Maybe this is the last time…..

Last week, I mentioned that I had surgery on my bladder, and that MAYBE it was the last time.  Not the last time I will need surgery, but MAYBE the last time I will need surgery for Botox injections in my bladder.  If you are interested in learning more about the how and why I have this done, please check out an earlier post, “You’re getting Botox where?”

The ‘short story’ is that I have both urge incontinence and urinary retention in my bladder, which makes my bladder have TOO much control in my life.  I currently self cath every day, have Botox surgery 2 times a year, AND receive PTNS treatment every 4 weeks to manage these issues.  Oh and I really try to laugh about it….smh

Some time ago (a couple of years ago), my urogynecologist talked to me about an device made by Medtronic called Interstim. (pictured above)

InterStim Therapy at a glance

The root cause of overactive bladder and urge incontinence are the sacral nerve roots, which control the muscle impulses that cause the bladder to expand and contract.

  • InterStim is an FDA-approved surgical implant device used to treat bladder incontinence and overactive bladder.
  • The device works by sending mild electric pulses to control symptoms such as leaks and urge incontinence.
  • InterStim can be reversed or discontinued at any time during therapy.

My first thought was SIGN ME UP!!!!  I immediately began researching this device.

The problem is, the device is not MRI safe.  ARGH!!!! (I HAVE to have MRI’s every year not only to stay on Tysabri, but to monitor my Multiple Sclerosis, and every other new injury I get.)  DAMN! DAMN! DAMN!

My doctor told me that the company was working on making a device that would be MRI safe, and it was just a matter of time.  MAYBE that time is now?!?!??!

Medtronic announced it’s submission of an MRI safe Interstim device to the FDA

This device is already being used successfully in other countries!!!!  If you have any experience with the FDA approval process, you know that it’s not quick.  My doc says that it was approved and should be available in April.  I haven’t been able to find any other source to confirm that though, so I elected to have the Botox surgery once again.

Even if the device is improved and that is the route I take, there is still no ‘guarantee’ that it will work for me.  There is a two week test phase etc.  The Colorado Woman’s Health website, provides a great source of information about the procedures etc, if you would like to check it out.  (IMO even better than the manufacturer’s website)  If you want more information, both sites are worth visiting.

Another treatment that I use is PTNS. (Percutaneous Tibial Nerve Stimulation)  IMO, this works similar to the Interstim device, but is performed without surgery.  I’ve posted this video of it being performed on my Youtube Channel if you would like to see.

Talking about bladder issues is almost as uncomfortable as living with them.  I said ALMOST.  If you are experiencing issues, PLEASE talk to your doctor about them.  There is help!  I have been dealing with my issues for over 20 years.  In the beginning, less invasive treatments: kegel exercises, bladder retraining, and medications worked for me.  Maybe I developed a resistance or intolerance to them and had to move on to the treatments I currently use?  I’m not sure.  I do know that the isolation and self esteem issues can be overwhelming.

If you have any questions, please feel free to post here or message me.  You can also contact me on my Facebook page.  I’m not a doctor, but I’m open and honest.

 

living our best life possible – JUST SAY IT!

Just say it!.  Sounds simple enough doesn’t it?  Yet so many of us don’t.  So many people put on a fake smile and utter the lie “I’m fine”.

Truer words have never been spoken than the last lines of Wendi’s post

“Sometimes is takes us being very, very honest with ourselves and others before we can even have a snowball’s chance in hell to begin the very long road to healing.”

If you have a minute please read the following post via living our best life possible – JUST SAY IT!

You’ll be glad you did!

Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!

 

 

 

 

 

 

 

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.