SPRING BREAK SHENANIGANS

I started a new job in January with the public school system. I am an Attendance Secretary at the middle school. I went from working four hours a day to being 8-4. I knew I would miss my workplace friends and the extra downtime in the mornings, but I have been at the school for over two months, and I don’t regret my decision.

I would be lying if I said having a school year schedule was not a huge part of the decision to take the job. My husband works in education and my daughter is in the 6^th grade, so being able to finally be off all the times they were was very appealing.

Getting paid sick days was also huge. I have not worked at a full-time job with benefits for over 10 years. That being said, having to take off days for infusions every three weeks at a new job was not something I liked. I was able to arrange it to just take half days though. My infusions are scheduled after lunch now instead of in the mornings. The busy part of my job is the mornings anyway, so it was a better compromise.

But since I do have a limit to my sick days, I scheduled doctor appointments during my very first Spring Break. It doesn’t sound much like a fun break. I had friends going to beaches and even overseas. But we managed to still have a good time.

My first appointment was Monday in Peoria with my new neurologist. The first one had moved to a different position, and it was the first time to meet the new one. Neither of these ladies had the title of Doctor. They are CNP’s. I have nothing against nurse practitioners. They are usually just as knowledgeable, are easier to get into, and are able to consult with a doctor if needed. BUT, I also had an appointment later in the week in Chicago with my diagnosing doctor to just make sure she agreed with my plan of treatment.

First things first though. I went to my appointment with a couple questions. I was anxious to try to push out my infusions to 4 weeks, and I was hoping she agreed. I also wanted her opinion on my hair loss.

She was nice. She was very approachable, easy to talk to and a good listener. But she had other plans. She acknowledged that spacing my infusions farther out was the plan, but she wanted to do else something first. Before each day of my infusion, I get Solumedrol administered into my IV. It is a corticosteroid that is an autoimmune suppressor. She wanted to take that away and see how I did before spacing things out further. I was a little disappointed, but I understood her train of thought. The plan was to get in three more infusion cycles and see how I did. If all was well, we could discuss moving them to every four weeks. She also wanted to leave the hair issue to my dermatologist. I was very curious to see what my Rush doctor thought about that. I guess I should also mention she put me through my paces and declared me good.

So, it was then off to lunch and shopping. My daughter has reached the age where clothes are becoming more important, so shopping looks a little different than it used to. My little girl is looking more like a young lady and toys and stuffed animals are slowly being left behind. As I listen to her squeal at the colorful things at Claire’s though, I see the little girl still in there somewhere.

Wednesday had us up super early to catch the Amtrak to Chicago. It had been a while since we had all got out of dodge, so we were excited. Plus, the train is fun. Comfortable seats and crappy train food is all part of the charm. As long as I get my coffee, even train coffee, I am fine. It’s a three-and-a-half-hour ride that gets us in Chicago at 10:30. My doctor appointment was Thursday morning so we had the whole day to wander around. We usually stay on Michigan near the art museum but this time I opted for something further up. The hotel was in a great location, between Michigan and Rush. We turned right out the front entrance and at the end of the block, across Michigan, was the Hancock Building and next to it Water Tower mall, so it was amazing! We did lunch at the Cheesecake Factory and spent the afternoon at Water Tower. My husband is a very good sport. Shopping with two women is not for the faint hearted. My daughter did well. He was longing to hit a museum, but we were on a mission!

Thursday came and after a huge breakfast we checked out of our hotel and headed to Rush. Uber is great, but you never know what or who is going to pull up as your ride. This time it was a mud splattered small SUV that reeked of cigarettes. Far cry from a Tesla that picked us up once on a previous trip to Chicago. But you get what you get.

Rush is a massive place. The Neurology department had just moved to a new building two weeks ago. It was bright and airy and still smelled like paint. The whole family went in with me. My husband and I credit this doctor with saving my life, and he wanted the opportunity to see her as well. A very nice med student came in first and went over my records, asked questions, and tested my strength. The doctor was called away for a minor emergency and he was filling in till she got back. We didn’t have to wait too long. She arrived and it was a nice reunion. She remembered me, I hoped she would, but it been almost 2 years and she sees 100’s of patients.

Rush and the hospital in Peoria use the same patient records application so it was so nice she could access my history for the last 2 years on MyChart. She looked over what I had been doing since she saw me last and asked questions about any symptoms, my medication side effects and any struggles I might have. I told her about dropping the steroid before my infusions and then trying to space them farther out and she agreed that was a good plan. She had questions about the oral meds I take. Her own treatment path usually stuck with infusion alone because it works so well. In a way I am glad my Peoria group had other plans because I really wanted to be done with infusions at some point. She did say that more people than not do go into remission at some point. I really hope I am one of those.

She also put me through the neuropathy paces.  Push against this, pull against that, follow the finger, walk on your toes, the list goes on. I did really well until she got to my feet. There is a little numbness there. She hit the little tuning fork and told me to tell her when I couldn’t feel the vibration anymore, and the timeframe was quite a bit shorter there than other parts of my body. I was not totally shocked. I hate my feet. Always have. Bunions are just not for little old ladies. Finding comfortable shoes for me is near impossible. If I actually manage to find something comfortable I try to buy it in every color they have. And I knew my toes were a little desensitized. Here was the proof. It is not the end of the world. She just warned me about tripping and being off balance when I get up first thing. I have never really had issues with those things, so I was not really worried.

We discussed my LPP. I told her of my adventures with minoxidil and doxycycline and  clobetasol. She said hair loss is put in 2 categories. Hormonal/hereditary or autoimmune related. I was in the 2^nd category, therefore Minoxidil was not an effective solution. That particular treatment is good for widow’s peak and top/back of the head bald spots.  Not me at all. The med student mentioned laser light therapy as being promising. It just so happens my awesome sister gifted me one of those helmets last week. It brought me to tears when it arrived. I had not used it yet because I wanted to be back from our trip so I could stay on schedule with it.

We left the appointment in pretty good spirits. It was overcast and rainy and we spent the rest of our time before the train at navy Pier. I did not get my Chicago pizza this time, so next time Chicago!

 I am not sure when we will try to go to Rush again. Maybe if I start to doubt my local doctors. I will have my first infusion without the steroid soon. I am really hoping I do just fine without it. It is likely the cause of my indigestion, inability to sleep and facial redness. Glad to see it go!  It will be the next step in breaking me free from the infusions. Fingers crossed.