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.

 

 

LET’S TALK ABOUT BAD TIMING

I avoided Covid-19 for 2 years and 4 months. I have no idea where I got it. My little three-person household was one that took it very seriously. We wore masks when it was recommended and then mandated. Our daughter did the entire 4^th grade online. We avoided crowds. We got our groceries delivered. We lost precious time with family.

When things loosened up we entered the world cautiously. And then CIDP entered into my vocabulary, and I got scared all over again. I was suddenly one of the people who “have preexisting conditions or a compromised immune system”. Covid could do me serious harm.

As time went on and no one in my family got it, we got complacent. The entire planet was tired of it all. You could still see people with masks, but they were few and far between. At the bank we still had Plexiglas between us and customers, but that was the extent of it. Anytime someone was sick it crossed my mind maybe I should put on a mask, but I didn’t.

In July of 2022 we had big plans. We were flying to see my in-laws and attending a wedding there. My daughter was singing in it. We planned my infusions around it because we would be gone almost three weeks. Tickets were purchased, plans were made. After over two years of doing nothing and going nowhere, we were excited to go.

Two days before we were to leave on the train for Chicago, I started with serious sinus drainage. Anytime I ever get sick, it always starts in my throat. It is not super unusual. But since we were getting ready to leave the country, I decided to see a doctor in case I had a sinus infection and needed meds. Well guess what, it was Covid. My heart dropped. Not even really so much about how my body would react, but that we had train tickets, hotel reservations and a plane to be on in 2 days!

I can’t even describe how I felt, having to go home and tell my family. I felt guilty. How did I let this happen? What was going to happen with our travel plans? This was a pretty expensive trip we had planned. I went home, blurted out my news and started crying. I don’t talk about my family a lot, mostly in general terms, but I have to say, my husband is one of the most understanding, caring people I have ever met. I mean, I certainly didn’t expect to go home and get yelled at, but I felt I had created a huge problem for us and I was not sure it could be fixed. He immediately told me not to worry about it and got on the phone, trying to push back plans. It went amazingly well.

We decided if we left 5 days later that would have us travelling to Chicago on the last day of my “quarantine” and I would mask that day. We changed the train tickets and hotel with no added fees. We were worried pushing back the plane tickets would be the expensive one. To our total amazement it cost us only an additional $76.

In the meantime, I was put on Paxlovid and suffered through the effects of Covid. Holy shit. It was not fun. First of all, the meds left a horrific taste in my mouth. I spent 2 solid days in bed. I HAVE been sick before, but not in recent history had I felt that bad. I ached all over and slept off and on for 48 hours. After I emerged from that fog, I really felt pretty normal, pretty quickly. There was concern that maybe someone else in the house might get it, but we decided to be optimistic.

So we left on our vacation. Masks were required on the plane so that made me feel better. We missed out on a couple activities but got there in time for Bachelorette Party. After almost 20 hours of travel and no sleep, I was willing to admit maybe we were not up for that, but my 10-year-old daughter was adamant we go, so we did!

We made it in time for the wedding, obviously, and my daughter did her song, and all was well. Except for the lost luggage. It showed up 3 days after we did. After hearing the horror stories, we almost anticipated this and had packed all our wedding attire in our carry-on luggage and praise Jesus we did. That would have been a disaster if we had not.

It was a good vacation. Towards the end of it my sinus symptoms came back with a vengeance. I guess that happens with Paxlovid. I spent one day with my sinuses so jacked up my eyes continually watered, and I couldn’t see. My sister-in-law was very helpful, they were there for several weeks and had a portable drugstore with them. You never know if you’ll be able to find what you need exactly in foreign countries.

I also noticed something else. I was starting to detect a weakness in my legs. By the time we got to our return travel day, it was quite pronounced. I had a hard time keeping up in the airport. It quite frankly freaked me out. I had not had a recurrence of my original symptoms since I was first diagnosed. I was extremely relieved I had infusions scheduled soon after we got home.

Apparently, people with CIDP who get Covid have been reported to experience a worsening of their CIDP symptoms. Luckily, my weakness did not last long. I don’t know if it was because I had my infusion so soon after the onset, or if it would have gotten better on its own, I am just relieved it went away.

So, I survived Covid. Hopefully I don’t have to experience that again, but I don’t think Covid is ever going away and since I highly doubt I will ever get a booster, I might. I hope if I do, it is not any worse than what I experienced the first time. I hope.

 THE POST I HAVE BEEN AVOIDING

Anyone who was a teen during the 80’s will relate to this picture. Hair courtesy of Aqua Net. I have no excuse for the bolero tie. Thanks to my sister for okaying me posting it.

We had a pool growing up and I unleashed many bottles of Sun-In onto my hair. Why do blondes always want to be blonder? In the years since I have had dozens of perms, highlights, and hair color procedures. Hair clips, barrettes, ponytails. Point being, as a female, my hair has been an integral part of who I am.

In October of 2021 I went to the dermatologist with some scalp issues. I had been before, diagnosed with seborrheic dermatitis. Itchy scalp that I treated with a topical. Just one of those things that you develop as you get older. My new symptom was a redness that framed my forehead just inside the hairline. Didn’t really hurt or even itch, just looked angry. It took a couple visits but they ended up taking a small biopsy of the infected area and sent it in. It came back with the diagnosis of LPP. That stands for Lichen Plano Pilaris, which is an autoimmune disease, because why have just one when you can have two! My body was now attacking my hair follicles.

The treatment for this included more of the topical I was already using plus also injecting it directly into the affected area of my scalp and adding in doxycycline, which is a tetracycline antibiotic. Yay, more drugs for me to take. It was suggested that the infusion medicine I got every three weeks might keep my LPP in check. And after finding an LPP Facebook group, of course, I discovered I did have it pretty lucky. My scalp did not itch, it was not painful, and it was limited to pretty much just the frontal area. A lot of people affected with it also lost hair. Lots of hair.

I mentioned previously that I did end up getting Covid. It was in July of last year. Inconveniently enough I tested positive the day before we were supposed to fly to Europe. That was a nightmare. I briefly mention it here because I don’t know if it is the reason I experienced what I experienced next, or if it was inevitable on it’s own.

In August of 2022 I started to notice it. A lot more hair in the shower drain and in my comb. After a few weeks I could see more scalp behind my ear. It was only on one side of my head and easily camouflaged by other hair. But it got worse. My hair has always been fine and thin. How do you think I got it all teased so high? So, hair loss of this magnitude was starting to become more noticeable. Maybe not by someone just passing me on the street, but I sure noticed. I mentioned something to my sister about it. She had seen me recently and said she didn’t notice anything.  I sent her some pictures. When I get out of the shower, it is very noticeable.  And to be honest, it has gotten worse since these pictures.

I have never really worn my hair short. Not since my Dorothy Hamill haircut days as a child. I love a good ponytail. But when my hair loss became more prominent, it was necessary to cut it. Simply walking down the hall in my house made it fly up around my head like some witch in a cartoon. I was hoping cutting it shorter would help. I hate it.

It was becoming harder and harder to style my hair in a way to cover my, quite frankly, bald spots. They were above my ears and now on top and towards the back of my head. It prompted me to make some purchases. Wide headbands, which only made me look Amish. Also, a hair topper. I named her Delilah.  It is like a baby step before a full-on wig.

My hairdresser warned my clipping it to my existing hair would make it fall out faster and not to wear it everyday. I then purchased a headband especially made for a hair topper to attach to, thereby avoiding any clipping to your actual hair.

As bad as my hair looks, I have avoided wearing it. I have told myself it is still doable to keep things under control with just careful styling and a can of hair spray. It is hidden. Unless you are taller than me. Or standing behind me when I am sitting. Or the hair spray fails. I have avoided checking the back of my head at the end of the day to see if it is all still in the place I put it. I probably don’t want to know.

Part of my reluctance to wear the hair topper is that once I do, there is no more avoidance of the matter. It is not anything I have ever brought up at work. What am I gonna say the first day I show up with it on? It’s part of the reason I knew it was time to do this particular post. I promised when I started this blog to be real and honest. And if I were being real and honest, I would say that this all sucks. It is even worse than having CIDP, which is ridiculous, but since I can’t be bald and beautiful like Jada Pinkett-Smith, I am stuck feeling embarrassed and unattractive. Like I said before, hair is a big part of who a woman is. Call it vanity. I miss my ponytail. I miss messy buns. I miss my pretty, getting darker as I age, hair.

I am trying collagen. My sister has purchased some shampoo that might help. Will it ever grow back? If it is Covid hair loss, possibly. If it is LPP hair loss the odds are lower. I tried minoxidil foam for awhile but gave up, any hair gained through that would fall out again if I ever stopped using it. Some of the FB group people swear red light therapy helps. I have looked at the helmets on Amazon. They can be pretty pricey. At some point, if the hair loss continues, I may need an actual wig. It might sound fun to have a couple wigs, have a different look whenever you want! It mostly just makes me want to cry. 

I try to tell myself I am not defined by how I look. It really is true, but in today’s society, where every photo is retouched, where every one only posts the beautiful things, I feel like I am lacking. That I am less than. But I am not alone. There are many situations and health conditions that cause hair loss. I wish it was more recognized, more accepted. For now, I hold close to me the love and acceptance of my family and friends that wouldn’t care if I was totally bald or sprouted a third hand. My hair does not define me. My hair does not define me.