Finding the positive in a bad situation

November 7, 2017February 9, 2018 ~ msgracefulnot ~ 2 Comments

Yesterday was a pretty PERFECT day. I am sure as I tell you about it, you might think I have come unhinged or am joking, but please keep reading and hopefully you will see why before I am finished.

I woke up at 6 am, fed the dogs, and realized I wasn’t going to have time to do my mile on the treadmill before I had to leave at 7. 😦 That meant it was going to be so much harder in the afternoon. 😦 STAY FOCUSED. It didn’t matter, I was going to traffic court with my daughter for a pretty bad speeding ticket, and I should probably at least be showered when I showed up. I took a shower, threw on some “presentable” clothes, loaded my dogs in the car and headed out the door. (I share “custody” of my dogs with my kid, but more about that another time)

I got to her house at 7:30 and she was still getting ready, which was fine. (I hadn’t planned on her being ready anyway; and we didn’t have to leave for a 1/2 hour.) We talked for a moment about whether we were riding together or separate and came to the conclusion that we would have to drive separate because we were going in different directions afterward. 😦 (I had hoped to use the drive to “catch up” on her busy 20 year old life.)

We left for the courthouse at 8:00, went through security with the “want to be cops” who insisted that I pull my keys out of the bottom of my suitcase of a purse and put them in an individual tray even though my purse was going through an XRAY machine?!?!? (Yes I was being petty and judgmental, but please stick with me) I silently did as I was told, and we made our way to the courtroom only to find out that her lawyer wasn’t there. (SMH, you have got to be kidding me!!!) Court started at 8:30 and the lawyer’s office didn’t open until 9. Not that I could call them anyway since I left my phone in the car because unfortunately, I have to been to traffic court enough times to know that phones are not allowed. ARGH!

We entered the courtroom and waited for my daughter’s name to be called. When it was, the state’s attorney called us to the back of the courtroom to offer her a deal. We told him that her attorney hadn’t showed up yet, and that we needed more clarification about his offer. As soon as I said she had a lawyer, he said he couldn’t talk to us anymore without the lawyer present. (well that’s a hell of a catch 22 don’t you think….we couldn’t locate her lawyer!!!!!)…. argh and argh!! He agreed to “mark us present” and let us go into the hall to decide what to do next.

While we were discussing her options and the hallway was clearing out, I had noticed that ONE lawyer had come into the hall numerous times calling for his client. I made a joke that if he would find my daughter’s lawyer, I would find his client. He went back into the courtroom and came back 60 seconds later saying that he couldn’t find her lawyer. I told him I was sorry I had looked everywhere and couldn’t find his missing client either. 😉 (yes this was only 60 seconds)

Wow this is getting lengthy, if you’re still here please stay with me, I promise there is a point and I will try to summarize more. The attorney said he would not charge us to talk to him for a few minutes if we wanted to talk. We did! The very last thing he said to us while we were in the itty bitty room was, “If you were my daughter, I would tell you to take some time to think about your options. You do have the right to ask for a continuance and you have a lot to think about. Here is my card, if you decide you would like to hire me. Good luck with whatever you decide.”

It was now 9 am. Time to call the “missing attorney” and give him a piece of my mind. I sent my daughter back into the courtroom to let the state’s attorney know we were still looking for her lawyer. OH SHIT I DIDN”T HAVE MY PHONE! (not to mention the time or energy to go all the way back to my car to get it) I asked a complete stranger if I could use her phone, SHE LET ME!!!!!!!!! (yes I was shocked) I quickly called the attorney’s office only to be told by the receptionist that she didn’t know where he was, but she would ATTEMPT to locate him and call me back. SMH…ARE YOU FRICKING KIDDING ME?!?!!? I hung up, closed my eyes and took a deep breath.

When I walked back into the courtroom, my daughter was standing in front of the judge with the state’s attorney and the entire courtroom was empty. The judge said, “Well come on up, we’ve been waiting for you”. (I thought, “Oh shit, she’s going to jail, I’ve pissed the judge off, and he is going to make HER pay.”)

Because this is my daughter’s life, and it’s not my right to share more, let me just tell you that my daughter did not go to jail. She got a speeding ticket and because we live in IL and she is 20 years old the consequences are pretty hefty. (max penalty 1500$ fine and/or jail time, and possible license suspension…. OUCH)

AND FINALLY TO THE POINT OF THIS WHOLE STORY……

As we left the courtroom I sat down and took another deep breath. I felt so grateful for so many things.

I am grateful that although my daughter has a terrible lead foot; (yes I think it is hereditary) She took responsibility for her mistakes. She faced so many fears that morning and handled it like a champ! While I was waiting for her to get ready for court, I was glancing around her house feeling proud that she seemed to have a pretty good handle on adulting. Dishes were done, animals had food and water, the house was clean. ( Big improvement from when she was 18)

I am Grateful for the attorney that took his time to calm a mother’s fears. (I know he was looking for business too, that’s his job, but he didn’t have to do be as nice about it)

I am Grateful for the woman that still has enough trust to hand her phone over to a complete stranger. (Even though I looked like a frantic crazy woman)

I can list so many more things that I am Grateful for, but for fear of losing you. I want to state my final points. They are all pretty much cliche, but maybe now you can understand why I am saying them.

Be Grateful for the small things in life.
Try to focus on the positive when it feels like the world is turning upside down
Be kind to strangers
Remain Calm
Own your shit
Focus on what you CAN control
Hope for the best, but prepare for the worst
Don’t judge other people!!!!

As we left the courthouse, I felt terrible for judging and labeling the security guards as “want to be cops”, they were just doing their jobs who the hell was I to judge. I approached them and asked if I could talk to them for a few minutes. During our conversation, I learned the reason the keys have to go in a separate container. I didn’t realize that they couldn’t tell if I had pepper spray or a knife attached to my keys if they were in a bag with other junk. They ask you to put them in the container so they can do their jobs of protecting people better by examining them closer. Yes I feel silly that I judged, but also Grateful that I learned something new.

New challenge for myself, spend the rest of this week remembering AND applying # 1-8.

Update on October Goals

November 3, 2017February 9, 2018 ~ msgracefulnot ~ 3 Comments

As I look back on the month of October and where I stand with accomplishing the goals I made for myself I realize I am happy with the results. To see my October Goals, click here: October Goals.

I did make it under 150 lbs. Seriously! The scale said 149.8!!!! I jumped off to get my phone to take a picture but apparently the phone weighs 100 lbs… (I mean about half a pound.) GRRRRR! But YAH ME! AND I learned many things in the process, so I count that as a win.

As far as learning wordpress, I had intended to watch endless hours of videos and read every article that I could find. ( very unrealistic I know) Instead, I just continued to write and click buttons. I have learned a bit more about putting in a link, and how to move pictures around with word wrap. (not perfect still, but again a win) I have also met so many new people, and found a couple of blogs that I enjoy. So that’s a double win! 😛 But most of all I am having a blast, and stepping out of my comfort zone.

The final goal I had was working on my cross-stitch. I thought I would have finished the entire lower left corner that I had outlined in my picture. (HA HA, more than a little unrealistic) I actually did get a lot done on it though, considering everything else that has been going on.

As I sat looking at the chart deciding where to go next, I realized that there are so many “pieces of the puzzle”, that it didn’t really matter where I started, as long as I started and continued working on it. I had forgotten that focusing on the pattern helped me to FOCUS on something when my mind was doing it’s “blender thing”. So I’m gonna count that as a win too.

I think there is some unwritten self sabotaging law out there that says for everything you cross off your to do list, 5 more “to do’s” appear. I’m am determined not to let myself be burdened by that. I have a “General Goal” for November, and the rest of my life. Continue moving forward. Making small goals, and moving forward to accomplish those goals has given me a boost in my otherwise lacking self confidence. I need to work on Trusting myself and remembering that the only person I am in competition with is myself. Competition to try new things, and to be a better person than I was yesterday.

Choosing Tysabri

November 2, 2017October 8, 2018 ~ msgracefulnot ~ 12 Comments

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri. Maybe not for the rest of my life, but for now, it works. I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE. (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt. I would rather have QUALITY of life than Quantity. Hell, I jumped out of a perfectly good airplane remember? Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world. Hell, I believe they are also strong enough to help change it. The world we live in today is a scary place. (I think the city I live in was ranked the 6th most dangerous city in the United States.) My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML. When I do die, whatever the cause, I am donating my body to science. Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have. If I can help ONE person feel not so scared and alone in this world… I have lived.

My decision to start Tysabri Part 5 of 5.

October 29, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus. Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?” Blah, Blah, Blah. (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.) What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule. I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8. For the first time ever, I experienced what people refer to as “slump week”. As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks. I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings. Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening. I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping. I had a harder time focusing. I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot. In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip. (visualize marching?) I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor. I also developed sciatic pain down the right side of my body. While they say this is not related to MS, I have to disagree. My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop. I was angry, depressed, or sleeping all the time. Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily. Yah more pain!?!?!

ENOUGH was enough! Time to put on more armor and fight!

In August, I told my neurologist that I didn’t care what “someone somewhere” said. I wanted to be on Tysabri every four weeks. It works for me. Stop trying to fix what wasn’t broken! I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed. I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion next week. I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every day for at least a total of a mile. (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there. One step at a time.

My decision to start Tysabri part 4 of 5

October 27, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

I began receiving Tysabri at the end of 2009, or the beginning of 2010. I’m not sure which, but I will try to remember to ask when I go in for my infusion next month.

In the beginning, I was terrified that I was going to be that 1 in 1000 that would “catch” PML. (Some days I feel that I would have no luck at all, if not for bad luck.) I was also terrified of the needles; every doctor, nurse, tech, vampire, etc that pokes me with a needle blows my veins, and bruises me enough to make others question if I am abused. Thankfully, I have a port now!!

No I am not abused

hard to get a good picture of the port

Every 4 weeks, I would have a full day of “adventure” to get my infusion. (even though the infusion only takes 2 hours.) The adventure included: leaving my house at 8 am, driving 1 1/2 hours into the city, paying an exorbitant amount for parking, and making what felt like a 2 mile trek to the infusion room, all before getting to sit in the waiting room to check in for my infusion. After following the drug company’s protocol for checking in, I would have a 20 minute panic attack while the nurse looked for and blew my veins. (Did I mention YAH PORT?!?! Yeah, 3 years before I finally got one! I’m a slow learner.)

Next, came the actual infusion itself. This part was a piece of cake, all I had to do was lay or sit there for 2 hours while I received the medication intravenously. Ok, it was a little more complicated than that. I had to go to the restroom 2-3 times because of all the fluids I drank before hand to make finding my veins easier, in addition to the hours’ worth of fluids they pump in your body with the medication. It was still relatively painless. I kept telling myself, at least it was only one time per month instead of getting sick every other night, like I did while taking another MS drug, Betaseron. Once I made the long drive back home, (hopefully missing rush hour) I could sleep the remainder of the day away if I needed to, and I frequently did. To be honest, at times, I also worried if the stress the whole ordeal caused me would make me have another ms flare up.

The only “reactions” I experienced from receiving Tysabri were headaches, and a feeling of sleepiness which until the last few years, I assumed were from the “adventure” itself.

Tysabri didn’t automatically fix me. I didn’t get a big burst of energy or start dancing a jig. In fact, the first change was almost unnoticeable. After about 6 months, it dawned on me that I hadn’t needed steroids, or been hospitalized for a new flare up in several months. Once I started to wrap my head around the fact that MS wasn’t running me over like a train, I began to relax a little bit. I started to commit myself to learning more about Tysabri, infusion centers, and what else I might try to do to FIGHT BACK against the MONSTER that had been winning the battle with my body and soul.

I have a very difficult time putting my experiences with receiving the infusion over the last 8 years chronological order, or giving exact dates so I’m not going to try. I will, however; give a bit of a summary.

I have had 2 relapses in 8 years, and they were minor in comparison to the ones in the past. My depression has improved. I still battle it every day, but I have a more positive outlook on life than I did 8 years ago. While Tysabri DOES NOT treat depression, I do believe a lot of my outlook has changed because I am not experiencing relapse after relapse or fast progression. I can walk about ½ mile continuously on a treadmill. (More or less depending on the time of day what other activities I have done and the temperature in the house) I have lost 60+ pounds and have started MOVING more. I have done a lot of physical therapy, including horseback riding for 3 years. I gave up soda. I believe all of those things have helped me become a better “MS Warrior”.

I have mentioned before that I am not trying to “sell you” on Tysabri, or to tell you that it “fixed” me. I am still “broken”. BUT, it did give me hope.

Whatever path you decide to take on your ms journey (no it’s not a vacation, but it is a long road) I wish you the best and encourage you to fight harder than you think you can. I truly didn’t know how hard I could fight until fighting was ALL I could do.

I will work on trying to finish the last part of “this story” later this week, but it has taken me more time to write this than I thought it would, and I need to keep moving!!!!