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?

APAD Day 32 Fall Detection on Smart Watches

Does it work?

I’m not sure. For Christmas this year, my Dad purchased my mother and I a Samsung Galaxy 4 Smart Watch with fall detection. While the watch won’t prevent either one of us from falling, maybe it will work to let someone know that we might need assistance? To be honest, I am afraid to “test” it. I don’t want to fall! It hurts!

I have smacked my arm against a wall trying to imitate a trip with no result. During my last round of Physical Therapy, my therapist tried to set off the fall detection by “pretend” falling with no results. I’ve been exploring Samsung’s website to see if I need to adjust my settings somehow, but haven’t found any new answers. It does specifically state HARD FALLS. With my luck, I’m sure I will have the “opportunity” to test it again. 😦 I’ve also watched a couple of youtube videos of people testing various watches only to find that most of the watches respond maybe 50% of the time.

Things I didn’t know I needed?

So far the watch does not work like I had hoped it would. BUT, I am kind of excited about some of the other features that it comes with.

  1. I have used the FIND MY PHONE app the most! (The phone has a FIND MY WATCH option too)
  2. The watch face is customizable. I have mine set to show me the date and time, the weather, number of steps taken in the day, and how much battery life I have left.
  3. I can make, answer, and ignore calls and texts using the watch.
  4. I am learning to use the camera control on the watch to take pictures of my dogs, and grandkids (without it being completely obvious that I am taking their pictures.)

Always room for improvement

  1. The watch needs it’s own charger. ( you will not be able to use the same one for your phone)
  2. The watch band is not user friendly. I am sure that I could buy a new one, but that’s just more $$$

What do you think?

Do you have a Smart Watch? Do you like it? Why or why not?

A post a Day APAD Day 31 That’s gonna leave a mark!

While I am happy to report that I did not have any surgeries last year. Let that sink in…. ZERO… not even one!!!!. ( If I haven’t mention before, I am 48 and have had more than 50 surgeries.) So ZERO is an excellent number! Alas, I am still Ms. Graceful…NOT, and I do have some injuries to report.

A Birthday Concussion

I don’t think I was awake for even an hour before I knocked myself out…. literally! I was standing in the kitchen, maybe pre-coffee? when I noticed that Einstein had taken out BOTH the recycling and the garbage. Of course he didn’t replace the bags, but he actually took BOTH of them without me nagging for days….This was huge! Happy Birthday to me!!! I don’t know if that thought had even sunk in before I slipped on the garbage can lid that he left on the floor and felt myself falling into the kitchen table, then the bar stool, and eventually landing on floor and passing out. Of course my head was the collision point for each surface. I’m not sure how long I was unconscious.

When I came to, I couldn’t see straight, the pain in my head was horrendous, and I began vomiting. I crawled to the freezer and put ice on my head until the world stopping spinning. After some time, I was able to clean up the mess I had made and messaged a couple of people that I had fallen and hit my head. Would they mind messaging me in a couple hours to make sure I was still awake? I even attempted to smh….FUCK that hurt!!!!!

I have had more than my share of concussions over the years, so I knew the drill. Don’t let the patient fall asleep and every hour or so ask them if they know their name etc. My vision appeared to be fine, so I spent the rest of the day watching tv and making small laps around the inside of the house trying to stay awake. Apparently “the drill” is an OLD drill. The new treatment for a concussion is lots of sleep!!!!! NO TV, NO COMPUTER, NO READING, JUST BRAIN REST!!!! Huh?….. Oh an apparently you should go to the hospital immediately if you are vomiting or lose consciousness. After two trips to the hospital for MRI’s, fluids, antibiotics, and pain killers I am now educated. I am also educated on the treatment of neurogenic fever….. SMH (it doesn’t hurt anymore)

Happy Thanksgiving to me?

Last year, Einstein and I hosted Thanksgiving at our (his) house. Our new puppy, Lady, woke me up at 6 am barking that she wanted to go outside. She immediately ran to the bedroom door and I followed to let her out. When I opened the bedroom door, she stopped, I DIDN’T! I tripped over her headfirst into the wall. and down I went ….again. THIS time, I didn’t lose consciousness, but there was lots of blood and I did require a trip to immediate care for stitches in my forehead. It took us over an hour to find one that was open, and the wait was more than 5 hours….. UGH…. Overall though we were all able to spend parts of the day together and my entire family (including Einstein) pitched in.

Can you guess what happened next?

Seriously try to guess…. I bet you can….

MORE STITCHES!!!!!

I was supposed to leave for Colorado the next morning so of course my house had to be spotless before I left. That sentence doesn’t even sound logical but somewhere in my brain it is….. The house must be cleaned before you go on a trip!!!!!! I don’t try to fight it anymore, it is what it is. I had also been cooking meals for Einstein to reheat while I was out of town. (this is so my kitchen is in one piece when I get home, not because I am nice) My suitcase was packed and sitting by the door. I was exhausted, but All that was left to do, was to feed the two of us and the dogs.

I cut the lid off of the can of dog food and placed it on a paper towel on the counter……, just as the doorbell rang signaling the pizza I had ordered for dinner had arrived. After answering the door, I carried the pizza into the kitchen looking for a place to put it on the counter.

Let me just scrunch up this paper towel ( the one with the lid on it) and throw it away…..

HOLY FUCK DID THAT HURT…..and SO MUCH BLOOD!!!!!!! Maybe the sounds that came out of my mouth were screams? I thought for sure I cut the tip of my finger off.

Thankfully I did not. Again, this required a trip to an immediate care. Fortunately, when you have blood spurting out of your finger you can skip the waiting room.

9 stitches this time

(compared to the 6 in my head)

The whole procedure was completed in less than 2 hours, the main complication being trying to control the amount of blood I was losing.

I still don’t have feeling in my finger, but I have been able to start writing with my right hand again. (on the computer and with a pen)

Here is hoping that 2022 is the year without more injury!