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 ..What day is it anyway?!?!?

I wish I were kidding

My mom was discharged on Friday. They really couldn’t do much more for her there anyway considering the whole facility is on lockdown because of a covid outbreak.  Yay for home therapy?!?!

Before my mom could be released though, we had to build a couple of handicap ramps to get into the house. Of course this occurred over several of the coldest days of the year. FUN! I really shouldn’t complain though, because Einstein did most of the work on the ramp while I moved furniture and boxes around in the garage and house so that both were wheelchair accessible. (I got to defrost inside when I couldn’t handle the cold)

I went to a DAV meeting with my Dad.  What the fuck is a DAV meeting?  Good question!  Is it sad that I still can’t really tell you even after going?  The next one is on St. Patrick’s day and alcohol and a hotel room will be involved…that could be fun though….

I learned a new phrase “snow squall”.  On the way home from the DAV meeting my phone was blowing up for almost an hour with urgent weather alerts warning of an impending snow squall in my city. What the fuck is a snow squall? My answer is “Something I never need to experience again, although fortunately I did live to tell about it.” In short the roads were already wet, then the temperature rapidly dropped and the sky opened up dropping snow that was being blown around at 35-50 degrees on roads that had now turned to ice with zero visibility…. hmm I guess it is easier to call it a snow squall?

I got completely baked. A couple times even. While it’s not that I have never smoked pot before, it’s never really been “my thing”. This week though, it has been my thing.

As usual, I’ve got lots to write about but have literally not had one moment to myself since I last wrote. Tomorrow I will finally have some time to myself. It’s Tysabri day though so I may end up sleeping the day away. We shall see.

While I haven’t been able to tell you what day it was for the last couple weeks, I do know that tomorrow is Monday. Next week is going to be just as busy beginning tomorrow morning with my Tysabri infusion. Usually, I sleep on infusion days. I am hoping tomorrow is one of the rare times I don’t.

I hope all is going well for all of you and that if you are swamped it’s doing something that you enjoy. Til next time

APAD Day 48 …. Showing my ass….a little

Why do so many people think that freedom of speech means freedom of consequences? For the record, it doesn’t.

I’ve been on social media a lot this week, posting status updates about my mom, going through and responding to emails about too many topics to cover, etc. To be honest my first impulse is to scream shut the fuck up you spoiled self indulgent assholes, but that would make me no better than the ones whining, tweeting, or whatever else they are doing to show their asses.

The airline example:

Almost everyday I see an article about someone getting being thrown off an airplane for being loud, disruptive, or refusing to wear a mask. What the fuck is wrong with you? What gives you the right to cause so much stress to other people. Can you take a second and be grateful that we have the ability to fly? For the people that refuse to wear a mask, the answer is simple…don’t fly. I don’t like masks, I don’t think anyone really does. I honestly don’t think they can prevent the spread of covid…maybe they help, maybe they don’t, but the law is the law. Standing up and whining that you don’t like it is childish, but more importantly it causes so much discomfort for other people. Please sit down and shut up!

I read another article about a woman who wants to sue the airline because they serve nuts on airplanes and she is allergic to them….so don’t fly?!?!?!? Why do so many people think it’s ok to assholes?

This week I have been overwhelmed with phone calls, inconsistent information etc. When I couldn’t handle it anymore I removed myself from the equation. “I’m having a bad day today, can we do this another day, please?” usually followed with TY, Have a good day! It’s really not that hard people.

I’m not saying that people don’t have a right to get upset or vent, but please take a minute to think about the consequences of how you are doing it. Is there a more effective way that doesn’t suck other people into your bullshit?…(says the girl who wrote a post about how much insurance sucks)

Let’s look at that for a minute. I wrote a post about something I am struggling with. A Post! I didn’t call anyone names, I didn’t burn or destroy anything. I asked people to be aware. I asked for advice. Maybe I’m not doing it right either, but I’m trying. I’m trying to respect others. I’m trying not to be an asshole. I’m trying not to be part of the problem.

APAD Day 47 Riding in a different seat

Today was my first time as a legit passenger in an ambulance…. PASSENGER NOT PATIENT.

Whenever I think about or see an ambulance, the hair on my arm stands up and I get a sick feeling in my gut KNOWING someone is having a really really bad day and I feel for them. Today was different.

My mom was transferred from the hospital to a rehabilitation facility near their home. There was no rush, no pain, no impending doom. There was a student EMT on the rig today, so there were a lot of questions being asked and answered, including some of my own. I have so much paperwork and so many thoughts to process so I’m gonna end there for now.