It feels like I have been to hell and back, AND I’ve got the scars to prove it. ( I could share a post about the scars alone, but let’s not do that now)
I still laugh when I tell someone that I started a blog about MS several years ago, yet I can’t remember one post I made about MS. ( Ok, I do remember advocating for Tysabri and bladder incontinence treatments, but not much else) If I remember correctly, 80% of what I what I wrote involved aging, empty nest syndrome, traveling, my kids, a bit about my grandkids, and let’s not forget Einstein and all that bullshit.
While I am no longer at my “rock bottom”, I also don’t want to rehash everything that has happened yet. Instead, let me highlight a few of the BIG changes that have been going on (in no particular order)
I QUIT SMOKING!!!! Yes the 2 pack a day chain smoker for over 30 years quit smoking. It’s been over a year.
I gained 20 lbs from quitting smoking
I had a male best friend and a female best friend die. How fucking dare they?!?!? Didn’t they know I needed them?!?!?!?
Maybe 10 more lbs gained from that.
I had bladder cancer. I had surgery, I had BCG (chemo), was declared cancer free, only to have it come back. REPEAT (I had surgery, I had BCG treatments, and was told, “I don’t see any cancer, but we are going to repeat 1/2 a treatment of BCG for 3 weeks and then repeat a cystoscopy in August.) If they find cancer in August, I will lose my bladder ….. literally. š¦
Not only did I have to stop Tysabri, I also had to stop all MS medications. HUGE increase in disability!
I have at least 3 more surgeries this year….. blah blah blah
Can I just say, It’s been rough?
I can’t believe I didn’t mention. I FINALLY LEFT EINSTEIN. Left like moved out, no contact, ( other that minimum kid and dog stuff) Not sure which is the bigger accomplishment, quitting smoking or quitting him, but either way, YAY!!!
I also traveled to Seattle, and not only met, but also stayed with a blogger, author, and overall Rockstar that I have admired for several years. I WILL write more about that more in the future……
In the medical community, I am known as a āHardstickā. When nurses attempt to locate a vein to place an IV, my veins seem to disappear, roll, collapse, or even blow. The āaverageā number of pokes or sticks before successfully accessing a vein is 4 or 5x per IV or infusion.
I started receiving Tysabri via infusion in 12/2009. This meant that every 4 weeks, potentially for the rest of my life, I would need to be STUCKā¦.repeatedly?!?!?! ā¹ After going through this for almost 3 years, I had had enough of being a pincushion.
Deciding to get a Port O Cath
I’ve had my PORT in for Eleven years. It was placed on Valentines Day 02/14/12 to be exact. There is no denying that it’s a part of me and has been for a long time. Ā Even though the needle they use to access it somewhat large and hurts for a moment, it usually only takes one poke. For that reason alone, I have never regretted getting a port. BUT…
Some negatives or frustrations about having a Port
Port o caths come with a strict rule. They must be checked and flushed with Heparin every 4 weeks to prevent blood clots. Ā This worked out perfectly for me because I had my infusion every 4 weeks so, 2 birds with one stone.Ā When I had to space my infusions 6 weeks apart instead of 4, I ‘pushed the buck’ so to speak, and waited 6 weeks between flushes. Fortunately for me I didnāt have many complications waiting the extra time.
Most places will not allow a āregular nurseā to access the port. They require that someone from oncology to do it.Ā For me this means, outpatient surgery centers, doctorās office laboratories, EMTās, and MRI centers will not access it for fear of infection. Since so many of the places won’t use it, I still had to be stuck 4 or 5 times for everything other than infusions. FRUSTRATING!!
Time to have the port removed?
I was forced to stop taking Tysabri, and began a drug that only requires infusions every 6 months. If I don’t have the port removed, I still have to make appointments to have it flushed every 4 weeks between infusions. If I could just pop in to the doctor’s office, get poked and flushed, it wouldn’t be a big deal. Of course that’s not how it works….. GRRRR I have to call a special number to make an appointment at the Cancer Center. They only flush ports between 3 and 5 pm. So I have to drive 1/2 hour in traffic during the time I am most tired every day for a 5 min stick (assuming I don’t have to wait an hour because they are backlogged). I realize this is not the end of the world, but it is frustrating enough that maybe it is the end of my port? It seems like it should be a no brainer.
So why am I dragging my feet?
I SAY, “Wouldn’t it be nice to go a whole year without a surgery?”, (remember I’ve had over 60 surgeries) but its more than that. It’s become a part of me. Maybe having it removed means that I agree there is no going back on Tysabri? I’m honestly not sure. I guess it comes down to Logic vs Emotion. ……..a constant battle for me
I have my next Ocrevus Infusion in September. My goal is to make a decision by then.
As I mentioned in my really long post, Off to see another wizard, it was a little bit of a stressful experience. In hindsight though, everything that happened that day until I met her, can be chalked up to the fact that it was new, and I wasn’t prepared. I feel that if I see her again, it will go much smoother.
As a person, and as a doctor, I liked her a lot!. She spent over an hour with me talking to and listening to me. Yes listening! For that reason right there I should claim her as my doctor. I will explain the reasons I am hesitant in a moment, but first I would like to tell you more about the positives.
Did I mention she listened?!?!?!? I never felt rushed, or like I was an idiot as some doctors with a god complex make you feel. When I was done giving her my history, she went through each of my 4 MRI’s with me, pointing out which lesion was most likely responsible for each symptom. Would you believe no one has ever done this with me before? I have been told that I uncharacteristically have more lesions in my spine than I do my brain, but that was it.
Random Fact : Most people with Multiple sclerosis might have ONE lesion in their spine for every 3-4 in their brain. I have 3-4 in my spine to every one in my brain.
The doctor compared each MRI with the previous one that I had, pointing out that while I had no NEW lesions, but several of the older ones had gotten larger. I wasn’t surprised by this information I also wasn’t surprised by the new diagnosis or “promotion” to Secondary Progressive Multiple Sclerosis, instead of Relapsing Remitting MS.
IMO, it means I’ve had MS a long time. The damage that has been is done, it’s not going to get any better. I may or may not experience progression, but if they change my diagnosis in my chart to SPMS instead of RRMS, there are less treatment options available. Even though I have a limited number of options available as it is, why shoot myself in the foot? So mental note made, but let’s keep it out of the chart ok?
Another random fact: When I was diagnosed with MS, there were only 3 disease modifying drugs available, and they were all relatively new. Today there are over 20 that have been approved for the treatment of MS.
The next thing we discussed was how I wanted to proceed going forward. Did I want to stay on the same treatment? I wrote about having to change drugs in the post below, but I don’t think I mentioned the fact that I did change to Ocrevus in September of 2022.
I told her that I made myself (and everyone else) a promise that I would give Ocrevus a try for a year, as long my symptoms didn’t suddenly worsen. I explained that my current bonehead doc would write the prescription and send it to my Primary care doctor to sign off on so that I could have the treatment locally. I would like to continue doing that if she also didn’t have privileges at the cancer center where I receive the treatment. She responded that it shouldn’t be a problem. We also briefly discussed whether or not to have my port removed, but that’s another story.
The final thing we discussed was another new diagnosis. CRPS Chronic Regional Pain Syndrome. I will write more about that in another post in the future because I still have many more questions than answers.
Overall I can’t say enough positive about this doctor. She was intelligent, compassionate, patient…..etc.
Why I’m hesitant
In my experience it is very difficult to find BOTH a doctor and their nurse, staff or medical assistant that you like. Most of the time when you call, you have to deal with the staff instead of the doctor. So far, the doctor is a 10, but her medical assistant is very unprofessional and did not appear very knowledgeable about drugs that are used in symptom management for MS when she was reviewing my list. That kind of caught me off guard.
Someone else called from her office after my appointment and said, “I’m following up after your appointment with the doctor. You do know that you will have to come up here for your infusion correct?” Um NO! I will not have someone drive me an hour and a half away to receive a 5 to 8 hour treatment and then come all the way back to pick me up! I explained that I was able to get my last two Infusions locally, and how I believed the previous staff accomplished this. I told her that I had discussed this with the new doctor and asked her to review her notes. Strike two for the staff!
It took me 3 months to get my first appointment. I truly hope that it is not that difficult in the future, but I won’t know until it’s time for my next infusion in September.
Please keep your fingers crossed for me that her staff is more competent than they appear, and that I don’t have to give up my first born for an appointment!
I guess I shouldn’t assume that EVERYONE has lost their keys at one time or another, but knowing the number of times I have done it, I do assume almost everyone has done it at least once.
I lost my damn keys again! I shrugged thinking that since it was the weekend and I didn’t HAVE to go anywhere, it wasn’t really a big deal. For the 1000 times that I did, end up needing to get something out of my car, I just used Einstein’s set. I looked for them for about a 1/2 hour a day until Sunday came and I still hadn’t found them. At this point I had to enlist Einstein’s help. He helped me retrace my steps that I remember taking the day that I think I lost them.
We checked both of our cars even moving the seats and checking trunks. I had mowed the lawn over the weekend so MAYBE I might have put them in my pocket? ( Surprising as hell if you saw my “wad” of keys) I had done and put away all of the laundry for the week, so I rechecked all the clothes in the closet, and dresser. I checked the washing machine and dryer. I even looked in the refrigerator to see if somehow I put them in there while I was carrying groceries in. Where the hell else could they be?!??!?!?
I don’t give my keys to anyone ever! I don’t let anyone other than Einstein drive the car and he has his own. Seriously now what?!?!?!?
After two hours of seriously and directly looking for my keys, I needed to sit down. I happened to be near our front door where my “new” rollator walker was positioned, so I sat there. As I was beating myself up about how I could have lost the keys AGAIN, I remembered that I used the rollator to carry in the heavier items. I stood up, lifted the bench seat and Eureka there they were! I almost cried.
I really need to stop losing my damn keys. I bought a “tile” chip to put on my keys, but could never get my phone to connect to it, and didn’t like that the chip had to be replaced yearly. Maybe I should try using one again?
I assume at some point in your life you have lost your keys. What is the longest amount of time you’ve lost them for? Did you also have to enlist help to find them? Where did you find them?
I want to write about today’s adventure while it’s still fresh in my head, but I am also exhausted from the all the anxiety I caused myself today. As I mentioned yesterday, I had an appointment with a new neurologist today. Of the 10 neurologists that I have met in my life I have disliked 8 out of 10 of them. It’s taken me 3 months to get in to see this new one, and I had to drive an hour and a half to get there…. Recipe for anxiety. I will write about all that drama and why I need a new neurologist at another time. So about today…
I woke up like a big girl at 6 am and headed out to have a pot of coffee on the deck and watch the dogs play. I had set out all of my medical records, list of questions, etc last night. The rollator walker was in the car, as was my Stick, so I was prepared. I threw on yesterdays clothes, put my hair in a ponytail, brushed my teeth, and left the house by 7:30.
The traffic heading north into Wisconsin was NOTHING like going Southeast into Chicago to see the last neurologist. I was even able to make a quick detour from the highway to use the restroom and get back on the highway in under 10 minutes. (Unheard of when heading into Chicago) The Google maps app was pretty accurate and I was able to arrive 15 minutes early as I hoped I would.
Since I had no idea where I was going once I got there, I decided to use Valet parking to save time. Or so I thought.
I followed the signs for Valet, and was blocked by a bar with a machine next to it. (like for a parking garage) I’m familiar with the concept, but haven’t used one in a long time. There was sign on the machine that said push button for help. OK, I NEED HELP, but I don’t see a button. I waved my arms in front of it thinking maybe it was motion activated then pushed all over the machine until finally a ticket/card popped out and the gate lifted. BUT I thought the signs said Valet?!?!?!
I’ve only used Valet parking a handful of times in my life, but I recall pulling into a section marked valet, and someone with a yellow or orange vest coming up to me taking my keys and giving me a ticket to claim my vehicle. This was not at all like that. SMH As I pulled away from the gate, I continued to follow signs for valet.
Finally I found the guy with the yellow vest. I put my car into park, rolled down my window, and asked if he wanted me to turn the car off or leave it on. Should I just hand him the keys or leave them in the car? He responded, “I don’t need your keys, we don’t get in your car anymore.” HUH?
I repeated Huh?
He said, “Pull up behind this guy. When someone in a golf cart pulls up, follow him into the parking garage, and then he will give you a ride back up here.”
IF you say so……
A few minutes later, a man did pull up in a golf cart and instructed the three cars that were waiting in line to follow him. We did. We parked our own cars, and then loaded into a golf cart with my walker strapped to the back. He dropped us back off where we started at the front of the hospital. I guess that’s one way to do it, but new to me and not as quick as I hoped.
I told the driver that I had never been here before and asked if he knew how to find the MS Clinic. “Go through those doors, down a long hall and you will run into someone. Be sure to give him your ticket.” was his response. Okay then? lol smh I’m glad I arrived early.
Once inside the hospital, I peeked my head inside an office and asked again where I might find registration. “Keep going this direction, it’s not too much further.”
At the first desk I came to, I pulled the ticket out of my pocket saying, “I’m supposed to give this to you I think.” He quickly asked if this was my first time here. I’m sure it was very obvious that it was.
He handed my ticket back to me saying that it was all paid. ( I didn’t pay for it, but ok)
He also gave me this map telling me ” follow signs for H, then you will see a carpeted area, pass the psych department ( you don’t want that) and continue following signs to K, but first you have to go to registration behind you.
I worried that I missed half of what he said so I borrowed his pen and drew a line and wrote not psych.
At the registration hub there were several desks with people seated behind them. Each desk had a number over it with a lighted green or red circle around it indicating whether or not you could approach. There was a large sign indicating the same and for redundancy a person standing behind a podium telling you the same thing the sign said. SMH again.
I really shouldn’t be surprised, I think everything in the medical field is more complicated than it should be. The podium girl directed me to number 6, the one desk no one was seated at. After waiting for 5 minutes, I was able to make eye contact with podium girl and mouth, “There is no one here”. She apologized and told me to go to “3”. Did I mention I was really glad I WAS early? Maybe I would still be on time at least?
Number 3, had me sign the black box machine a couple of times assuring me that I wasn’t giving up my first born child, and sent me on to the area marked K. “Thank you, I have a map” As I was approaching H for neuropsychology, I wondered if I shouldn’t stop there also….. one stop shopping? No, no Grace keep going. BTW the map is incredibly deceptive. The halls are long as fuck and don’t mention that there are 20 offices between H and K.
Finally I got to the area marked K……. and ANOTHER check in Desk. literally LOL and SMH
I think I have reached my limit of writing for the day. I did meet the new neurologist. So far, I like her a lot. I have a lot of information and a new diagnosis to process though. It has been a LONG DAY.
Hope you all have a wonderful weekend! Thank you for reading and commenting. I really do look forward to the interaction.
MS Graceful...NOT! 