Taking inventory

I’m not sure if everyone does this, or if it’s just me, but during the year before a Milestone Birthday, ( 21, 25, 30, 40, 50 etc) I do an “inventory” of where I am in life versus where I want to be.  If I died tomorrow would I have any regrets?  Do I need to say anything in particular to anyone? Are my affairs in order?  What do I want to accomplish in the next 10 years?  and so on and so on.  I also do this everytime I get another scary diagnosis.  I will be 49 in less than a month which will start the “OMG I’m gonna be 50 reflections”.  This year I get to kill two birds with one stone I guess?  lol

When I was 29, I received the “wonderful news” that I had cervical cancer.  As the doctors were talking about chemo and radiation, I asked, “why not just take it all out?.  ( do a hysterectomy)  You should have seen the shock on their faces.  I heard, “but you’re not married!  What if you want more kids one day?”  For me it was a no Brainer, I was a single parent. I kind of had to be alive to raise the two children I had.  If doing a hysterectomy would allow that to happen, that was the decision.  I had to go see a psychiatrist to make sure I was capable of making such a decision all by myself?!???!…. I did. Still smh about that.  Yay the hysterectomy worked!  No more cancer! 

I think this was the first time I did the whole “inventory” thing.  My biggest fear during all that time was that my kids wouldn’t KNOW me.  The real me.  The one who makes mistakes 2 or 3 times before learning a lesson.  I started making photo album journal diaries for the kids.  I made albums containing my deepest darkest secrets, and ones for each year of each of their lives.

But I digress.  As I look back over the last 48 years of my life, I can honestly say that I’m not disappointed.  I have made ALOT of mistakes, and have learned most lessons the hard way, but there is no doubt that I HAVE LIVED!  Looking into the future, I am not even a little bit worried about girls and their families.  If something were to happen to me, I believe they would both step into the role of taking care of my parents.  They would even check in on Einstein for me. Can I really ask for more?

With all of that being said, I think I am ready to take the next step and make the switch to Ocrevus. The 3 disease modifying drugs that I was considering all require a certain blood tests before beginning treatment. I have had the tests completed. The next step is waiting for approval from the insurance and drug company. I won’t be “sitting” here waiting. I have a life to live, and Monday morning I’m heading out to see the grandkids to do just that!

Decisions, decisions, decisions

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

  1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
  2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.

APAD Day 38 $1.72 to pee

Have you ever heard of a foley catheter? It is an indwelling catheter that is a attached to an external urine collection bag. If you have ever been hospitalized and needed a catheter this is the kind they used. Not fun right? RIGHT! Fortunately, they also make one time use catheters. They are individually packaged. When you need to urinate, you insert the single use catheter while sitting on the toilet. Your bladder is emptied, then you remove it and discard it. YAY!!!!…. or not.

Single use catheters are expensive! $1.72 each to be exact. So if I have to pee 10 times a day that’s $17.20 a day to pee or $516.00 a month. WHAT THE ACTUAL FUCK?!?!?!

The reason this comes up is because I have Medicare and they have decided that I am allowed to pee free of charge 6x a day but no more. If I have to pee more, I’m gonna have to pay for it. $206.40 a month to be exact. Yeah that’s not going to happen. I do have other choices though

  1. Reuse the single use catheters ( Mind you the box they come in, the patient information, and just about every website that sells catheters STRONGLY insists that they are not to be reused.) Medicare even has a commercial on tv that a person should be able to use a new catheter each and every time they urinate. (Then why the hell won’t you pay for it?!?!!?)
  2. I can use a foley catheter (walk around with a bag of pee strapped to my leg everyday) for a couple weeks a month when I run out.
  3. Try to spread awareness of this issue, hoping it will make a change.
  4. Try to enlist others to spread awareness as well.

I’ve chosen to do all four of the choices that I feel I have. I am also going to attempt to contact Cure Medical to see if they have any patient assistance programs. https://curemedical.com/contact-us/

If you are able, please share this story or blog, tell someone the story, something. It would mean a great deal to me if you would.

Do you have any other thoughts on how to work around this problem?

Living with Interstim 3 months post op

Back in August of this year, I had the Interstim bladder stimulator placement surgery. In September, I wrote about my journey with Bladder Incontinence in a post called, Being a Human Guinea Pig. A few days later, I wrote a sarcastic, yet honest post about what I was going through mentally after having the surgery. At the end of that post, How did your Interstim implant surgery go, I said that the device was already in my body, so I should at least give it the benefit of the doubt. I have, and I would like to share.

Did the Interstim Device “fix” me?

NO

Did it help reduce my symptoms more than 50%?

Absolutely!

Do I regret having the procedure?

No

Would I recommend the Interstim device to someone suffering from Incontinence?

Honestly, I don’t know. ( Not very helpful am I?)

Maybe this will help

On a day to day basis, I don’t even realize that I have the implant anymore. By this I mean, I don’t really notice it unless I am looking for it. I don’t feel any pain at the incision site while I am sitting, driving, walking, bending over, etc. I use a leg press machine for physical therapy and have not had any issues with that amount of pressure against my back side either. I have to admit that I do miss the “ass pats” (spankings?) that Einstein used to loving provide, but to be honest we are both a little nervous about that experiment.

I did not die in the MRI

I was very anxious about having my quarterly MRI last month, (another story for another time) but after finding a location that had the equipment and experience to perform MRI’s on patients with implanted devices, my anxiety about my body being ripped apart while in the tube has been relieved. As a bonus, the pictures from the MRI model that they have to use are 1000x better than any of my previous 100 scans!!!

Going through Airport Security with an implant

I am pleased to report that I also did not die while going through airport security at O’hare or Denver airports. (I did this two times just to be sure.) Medtronic supplies you with a card stating that you have an implanted device and can not go through the metal or magnetic detector. You can also always ask to have a pat down from TSA, but I had no trouble standing in the usual “stand still here and put your arms above your head” scanner.

Other horrible things that did not happen

The above list had me terrified, but to date I have done the following and have had no issues:

  1. Driven a car without turning it off
  2. Operated power tools including a drill and a saw while standing on an aluminum ladder
  3. I carry my cell phone in my back pocket (over the device) for 90% of my waking hours
  4. Operated all household appliances including the washer, dryer, dishwasher, microwave, vacuum cleaner, freezer, computer, television, security system etc
  5. I have been to the dentist with my 2 year old grandsons, not as a patient

What HAS happened after having the device implanted?

Most of the time, I am able to hold 400-500 ccs of urine before leaking. (pre interstim and without Botox surgery, the number was closer to 150 ccs) I still have to use a catheter to empty my bladder completely, but am actually able to “pee a little” on my own (if that’s a thing). *Drinking Alcohol changes those numbers. Beer seems to run right through me. The carbonated or hard selzer drinks ( Vizzy, white claw, corona) seem to move a little slower, but still increase frequency and decrease retention.

The only other change

I have to “recharge” the device once a week.

As you can see, the recharger is about the size of my hand. Also in the picture is an elastic belt that you can put the charger in to wear while you are moving around. The Medtronic website shows a woman gardening while wearing her belt. Yay her! (This doesn’t work for me.) I have found that I have the best results and shortest charging time, if I sit at the computer, put the device under my underwear and don’t move for a half hour or so. For some reason, when I am re-charging, my right foot (the one that has that all the titanium in it gets very warm)

While uncomfortable, its not incredibly painful. Maybe it’s a coincidence? Maybe that is where the nerve that is being stimulated ends? I’m not sure. I could also turn down the charging speed, but it takes twice as long to charge and sitting still IS difficult for me.

If you are reading this because you or someone you care about it considering getting the Interstim, I wish you the best of luck. Only you can decide if it’s right for you. DO YOUR RESEARCH!

How did your Interstim implant surgery go?

GRACE : I can’t tell you.

Wonderful friends: What do you mean you can’t tell me? Weren’t you there?

GRACE : Yes.

Wonderful friends: Have you noticed any difference?

GRACE : Yes, my back hurts and I am supposed to do nothing for the next two weeks.

Wonderful friends: What do you mean nothing?

GRACE : I don’t know the drug rep said don’t bend, twist, or lift anything over 10 lbs, no driving, no sex, don’t touch it….. So basically nothing!

Wonderful friends: Well what do you expect, you just had surgery?

GRACE : Yeah yeah, I’m gonna go do nothing…Thank you for asking, ttyl

Two days later

Wonderful friends: Are you feeling better today?

GRACE : What do you mean? It doesn’t hurt as much, but I can’t really do anything so I’ve been kind of grumpy.

Wonderful friends: Do you notice any difference with your symptoms?

GRACE : Nope! I don’t feel anything. I’m still waking up soaked. I don’t know if the device is on or what it is supposed to be doing. The doctor hasn’t even called me back to tell me if I can take a damn shower….grrrrr

Wonderful friends: When do you see the doctor again?

GRACE : TWO WEEKS!!!!! I’m gonna go, they sent me home with all these books to read and I should probably get started on that.

An hour later

GRACE : Incoherent mumbling

Wonderful friends: Why are you crying, did you try to do something you weren’t supposed to?

GRACE : BECAUSE I DON’T KNOW WHAT THE FUCK I JUST DID!!!! I feel like I have a fucking alien inside my body! I am terrified to move wrong so I don’t break or disconnect anything, what if I end up paralyzed?!?!?!

An MRI is like the biggest magnet we are ever gonna come into contact with right? So If it’s MRI approved, I should be good right?!?!?!?!?

Why does this book tell me to AVOID ALL MAGNETS…stereo speakers, computer disk drives, keep everything a minimum of 4 inches away from the implant!!!!! So I can’t carry my cell phone in my back pocket?

OH! And I have to shut it off before driving?!?!?!?!?!?!?!?

What the hell did I get myself into?!?!?! Why wasn’t this information available before surgery?!?!?

OH and it says NO skydiving, or things that could jostle the impant. Does that mean NO Horseback riding?!?!? High Altitudes should NOT affect the device?!?!??!

Can we just say I had a really bad couple of days? Maybe even a couple more melt downs. I FELT tricked, lied to, deceived….you get the point. How could I go in an MRI (remember really big magnet?!?!?!?), but I had to be afraid of a stereo speaker?!?!?!?

Once I calmed down enough, I came to the conclusion that this device was already in my body, so I should at least give it the benefit of the doubt. I went through each of the books that they had given me marking each page with questions. (I ended up with 2 pages)

Finally the time came for my post op appointment. I knew that the drug rep would also be there and even though, doctors weren’t allowing patients to bring anyone with them to their appointments ( smh covid) I NEEDED Einstein with me, so HE WAS COMING IN WITH ME!!!!!

I’m not sure if it was the xanax I had taken, the fact that the office didn’t fight me about bringing Einstein in, or the fact that while we were waiting to see the Dr.we began talking to another patient that had also had the same surgery, (but for different reasons) but by the time we were shown to the exam room, I began to relax.

So far I have written about my emotions concerning this surgery. Emotionally, I did not do well. Do I regret getting the Interstim? Honestly it is too soon to tell. I DO however, regret that I didn’t meet with the Medtronic Representative BEFORE surgery. I WISH, I had seen the device, and all of the equipment that comes with it…but that’s on me.

Our conversation with the doctor and the representative lasted over an hour. I will continue to write more about my experience in the future, but I don’t want to leave you with any misconceptions…. Here are some points that were explained to me.

  • The interstim leads were NOT placed in my spinal cord, but by my sacral nerve. (meaning the device should not paralyze me, if I do get a shock)
  • The warnings concerning magnets is that they could turn the device off, but will not cause it to pull out of my body
  • Flying in an airplane is safe (I hope) and I am allowed to go horseback riding after I give everything more time to “settle”.

I’m am still nervous and anxious, but I’m no longer terrified. As I mentioned before, this device is already in my body, so I should at least give it the benefit of the doubt.