Letter to My Best Friend (Munch)

It’s hard to believe that it’s been over a month since we’ve talked……

Who am I kidding, I talk to you everyday?!!??!

If I really think about it, I guess it also hasn’t been a month since I’ve seen you. I have 1000’s of pictures, both physical ones and all of those images and memories of us and our 30 years of friendship that are burned in my mind.

Hmmm in reality, it hasn’t even been a month since I have heard your voice. (I have never been more thankful for the technology of voicemails and videos!!!!)

SO WHY DOES IT STILL HURT SO BAD?!?!?!? I feel like I have a huge hole in my heart, yet my heart is so full of you.

FUCK CANCER! Fuck all the pain I watched you endure! Fuck all the pain I still feel!!!!

Well now that the emotional shit is out of the way… ( NOT) We should probably catch up…

Oh wait! I’m mad at you!

I don’t care if it makes any sense!

I’m mad that you aren’t here! I’m mad that my RIDE OR DIE friend DIED! How could you do this to me?!?!?!?

We are supposed to turn 50 next year!!! Remember the party of a lifetime?!?!!? So where the hell are you?!?!?!?

When I opened wordpress today, I had every intention of “catching up with you”. I wanted to tell you that my surgery went ok. The new MS drug hasn’t hurt me, I don’t think…, I finally kicked the crazy bitch out of my house, although she is threatening to sue me…smh, and so many more things, but then the emotions came pouring out.

I’m sorry. I miss you.

I’ve been looking at memorial tattoo idea’s to add to our “eyes in the back of our head” tattoos. I found one that says, “You may be gone from my sight, but you are never gone from my heart.” , which I kind of liked. I also thought about tattooing the last note you wrote me, under the eyeballs. With as emotional as I have been, I know that I need to wait a little longer. Maybe I do that for the big 50?

Rest in Peace my friend!

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Damn Girl! Where’s your bottom?

That might just be the title for my new book! KIDDING!!!! Like I need another project in my life…smh

“Where’s your bottom?”, is however what a respected ‘friend’ said to me after I reached out to her last week. I was speechless. Not because I was offended, I don’t think, but I honestly started questioning myself. Have I hit rock bottom? What exactly is rock bottom? Is it a level you set for yourself? Does society dictate what rock bottom is?

I should probably go back and elaborate or provide more context about the original conversation. This person I reached out to is someone whose strength I admire, who’s stubbornness rivals my own, someone who has MS and is also a blogger. I reached out to her, because over the past year, I have seen bits and pieces of her life here and there on Facebook and she seemed to be doing really well, while I on the other hand…. HAVE NOT….

I have been struggling a lot. Treading water maybe? Maybe I was looking for a magic pill? I’m not sure. What I do know is that whatever the hell I have been doing has not been working. I have been sleeping 10-12 hours a day, waking up tired and wanting to go back to sleep. Once I have dragged my ass out of bed, I went through the motions of adulting, and parenting my parents, then I watched the clock waiting for it to signal that it was time to get away from it all again. In between waking and the relief of bedtime, I was just kind of “going through the motions”. I hated the sound of my phone ringing or texting…who the hell is that and what do they want from me?!?!? Not to mention the 20-40 spam likely calls that I get a day. So I was there, but not there.

I needed something to be happy about, even if it was just being happy that someone else is happy. I NEEDED to hear something positive. (I have been surrounded by toxic people and so much negativity lately that it almost killed me) So I reached out.

I loved hearing the happiness in her voice and the excitement as she told me some stories. I did need that, but then the topic shifted to me. She told me that she had seen some of what I have been going through the last year on Facebook, and thought, “Damn girl, where’s your bottom”? And I have been thinking about that phrase ever since.

Where’s your bottom?

I don’t know. I really don’t. Honestly, I don’t want to know.

There is no prize for how much shit can one person go through, although it does seem like it’s a contest I have been having with the world lately. Do you win, if you can fight another day?

The thing is, whether I have reached my bottom or not, I do know that I don’t like where I am. I guess the real question is, “What am I gonna do about it?”

I have a Job!

Before you read any further, close your eyes and imagine someone, ANYONE saying those words to you. “I have a job”.

Good for you? How do you respond to that? Yay?!?!? I mean seriously, why does the phrase, ” I have a job”, sound like an insult? Maybe I feel that way because I currently don’t have a job? It’s strange to me, because even when I did have a job, I don’t think I have EVER said, “I have a job”.

I am sure I have said, “I GOT A JOB!!!!”, after being unemployed for a while. I know that I have apologized to my friends and my children, that I couldn’t do something because I had to work. I’ve even talked about my job, but I honestly don’t believe that I have ever uttered the phrase, “I have a job”. To me, it’s offensive. Like, I have one and you don’t! Why would you ever go out of your way to point out to someone that you have something they don’t?

Of course there is more to this story than me being upset by a seemingly simple phrase, but it got me thinking…really thinking. I have had 3 people use that exact phrase to try to hurt me, and those words hit the mark EVERY. DAMN. TIME. How do you respond to that? Good for you?!? Are you trying to say that somehow that makes you better or more important that me?

In the end, I guess the words don’t really matter, it’s the intent. You are purposefully trying to hurt me, therefore, I no longer need to give you the time of day. For the record, the only job that really matters, is NOT BEING A DICK ( or in this case a Bitch)… you didn’t do that so well did you!

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.