The Wizard Report

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.

What Is Secondary Progressive Multiple Sclerosis?

Here is the link from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-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.

Decisions, decisions, decisions

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!

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Lost keys…Again!

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?

Off to see Another Wizard

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.

Nothing good happens after 2 AM.

As a former night owl, I have lots of stories and examples of how true that statement  is.  I have recently come to the conclusion that nothing good happens before 8 am either. 

Whenever possible, I make my first appointment of any day at 10 am.  I’ve done this for so long, I don’t even remember why I chose this time.  I currently have Physical Therapy ( pain and torture, pt, etc) on Tuesdays and Thursdays at 10.  I tend to make my parents appointments on Mondays and Wednesdays in case I need to be there with them, and Friday is for last minute “Oh Fucks.” This week however, my parents had their 3 month appointment with the GP at 10:20 am on Tuesday.  Fuck, I have PT at the same time! After some fenagling, I was able to move my appointment to 8 am on the same day instead of 10.  GRRRRR

I went to bed early Monday night, well at least I tried, knowing that I would have to get up at 6 to consume enough coffee before I had to leave at 7:30.  When the alarm went off at 6, I threw the phone across the room to make the god awful noise stop.  I knew I wasn’t going to see the kids or grandkids.  ( About the ONLY reason to get out of bed before the sun) Why the hell would I ever set an alarm for 6 am?   Thankfully, Einstein came in to remind me that I had did have SOMETHING early today.  Fine Fine, I’m moving.

As the coffee began to work its magic, I remembered what I had to do…. Doctors!  I managed to ATTEMPT to leave my house at 7:30.  I say attempt because I couldn’t back out of my driveway without a kid appearing behind me.  Oh School, I remember that!  Shit that means they are trying to catch a bus, which I will no doubt get stuck behind.  Whoops! 

When I finally left my subdivision there were cars everywhere!  Where the hell did all these people come from?  Crap was I going to be late?  Ugh

I did actually make it to PT on time.  I even beat some of the therapists there. In the end, I did survive but I still don’t recommend it. Tomorrow I have to be on the road by 8 am again to drive an hour and a half to meet a new neurologist. Definitely not my first, second or 3rd choice, but considering it took me 3 months to get a damn appointment, I agreed to the horrendous time.

Next week I’m back to 10 o’ clock appointments. 8 o’clock appointments are for the birds!

Walkers, Canes, and Sticks OH MY!

I have temporarily had to use wheelchairs, walkers, rollators, scooters, canes, and walls many times over the years during recovery from an MS flare up, or some other self induced injury. I am trying to be grateful that after having Multiple Sclerosis for over 20 years, I am only now at the point that assistive devices seem have become a permanent rather than temporary feature of my life.

With so many assistive devices available in the world today, how do you decide which one is perfect for you? Is there such a thing as THE PERFECT ONE?

I believe the answer is NO!

While I am learning to navigate this new world of mine, I’m hoping to not only share my experiences/opinions, but also to ask you to share yours as well if you don’t mind.

For any of you that have written about this in the past, please feel free to drop your link in the comment section as well. Maybe someone will “stumble upon it” and find the answers they have been looking for?

So many options:

Power Wheelchair

Rollator/ Walker

Standard (transport) wheelchair

Although it’s not pictured here, I think MY STICK, is my go to, most used aid. Simply for it’s convenience. It’s small (in comparison to the other options) and definitely portable. I didn’t realize how much I had been using walls, people, and other objects until Covid tried to make me fear touching people and things and vice versa. Unfortunately, I forgot my stick in Colorado on my last visit and it seemed impractical to ask my daughter to send it back. The problem is I can’t find one JUST LIKE it. It’s much taller/longer and I feel even thicker than any cane I have seen. ( 4 or 5 feet tall)

I ordered the one (actually 2), pictured below, from Amazon when I got home from Colorado. While the price was right, and bonus that I have now have two for next time I lose one, it doesn’t feel as strong as the wood one. I do like that it will “break down” or collapse when I am at a doctor’s or in my car etc, but I’m afraid it will break down when I don’t want it to. We shall see…. maybe there is another story in the making?

My 2nd go to is the rollator/walker

After one of the many times, I had to “learn to walk” again, the doctor and I discussed the possibility of my using a walker.

I was concerned that leaning on a walker would not help my posture. Maybe it would improve something, but at the cost of something else? He had to write a special script for me to have a “taller than average walker” with a bench or seat on it so that I could use my arms to help keep me upright, not just to help me raise my legs. (if that makes sense) The result is that I have a BIG, like bariatric, walker that I love, BUT it is SO big, it doesn’t fit in my trunk, and to be honest it’s kind of heavy. I almost feel invincible when I am using it. I am 90% confident, I can keep myself up if I trip, and I have a ready made seat available if I need it. * Bonus, if you sit on it, someone else can push you if they had to.

Another option I have – The manual or transport wheelchair

As far as wheelchairs go, I believe this is the smallest and lightest type available. It’s actually the first assistive device I had to use because I couldn’t move either of my legs. I’ve also used it multiple times when I haven’t been able to bear weight on a lower limb from surgery etc. They do make knee scooters, and crutches, but with my lack of balance, using them would be asking for trouble. I also use mine when I have to a distance of more than 1/2 a mile to make. I hope the more I use the rollator, the stronger I become and that distance will be longer. I used to try walking behind the wheelchair (using it as a rollator/walker), but not only can it not support you leaning on the handles, without enough weight on the seat, but you have no way to reach the breaks if you trip.

I have used a wheelchair at the airport for years, which allows me to still travel as much as I do. Most airlines have changed the type of wheelchairs they have though, so it’s thrown a bit of a wrench in the works.

I can completely understand WHY they changed.

This type of chair allows them to not only push more than one passenger at a time, but allows them to store the passenger’s bag under their seat.

Once they have dropped you off at the gate though, you can not move if you have to use the restroom or something unless you have carried along another assistive device. There are no wheels on the sides of the chair for you to use.

I have carried my walker or stick with me, when I could walk, but I’ve had to keep my own wheelchair with me when I was not able to walk at all.

Bonus or alternate uses for a wheelchair:

Instead of attempting to carry something with both arms, use the wheelchair as a cart or dolly.

I used to rock/roll the twins to sleep. We’ve also used it as their “stroller” because the weight in the seat allowed me to lean a bit. If my legs got tired, I could put them on my lap, tie them, in and use my arms.

The Power Wheelchair

The last piece of equipment I own is a power wheelchair that my parents purchased second hand for me. If insurance doesn’t cover it, which they most likely won’t if your condition is temporary, and maybe even then not, these chairs are EXPENSIVE.

I most commonly use mine outside of my home because of the uneven ground. I don’t have a lift or other way to transport it, so home it stays. I actually started using it a lot more than I ever have after the last surgery. When you are using a manual chair, if you cant use your legs, you have to use both hands navigate which makes balancing laundry or trying to vacuum difficult. It proved to myself that I could do it, but using a power chair with one handed controls allowed me to use my other for whatever task I was trying to complete. Much easier! You probably shouldn’t, but when I could keep my legs straight, I could use the chairs power to push heavy things.

I want to remind you that I am not a doctor or expect at any of the things I have written about today. I’m trying to accept my knew limitations as gracefully as possible, and hope that by sharing this information, it might help. Again, if you use assistive devices or have any tips/ stories to share, please insert your link or comment in the comment section!

Thank you for reading!