BUSY DAYS AND BABY STEPS

I can’t believe August is over. Been way too long since I posted anything, but holy cow life got super busy since the first of August. I started back to work, baby girl turned 12!!! And started 7^th grade!!! all the appointments happened to get everything done before kiddos returned to school.

I recently met with my neuro and got the green light to move from 4 weeks between infusions to 5 weeks! This is huge! I successfully got through three rounds of four weeks apart and after my infusions last week, going forward, we’re going to try five. I am really hoping I still do well. I’ve not lost any strength or experienced any type of weakness the last few months, so praying adding on 7 more days doesn’t have any impact. IF the five weeks goes well for a few rounds then the plan is to drop my dosage amount. So yay!

Other big news is I wore a wig out in public a few weeks ago. I guess it was a successful run. I wore it to my niece’s baby shower, so quite a few people were family and are familiar with my situation. I sent out a head’s up message on the group FB page, just to clear the air and say, hey, I’m doing this, feel free to comment. Have to say I was incredibly nervous. All in all the wig looks fine, it’s just that it doesn’t really look like Me, the me I have been seeing in the mirror every day. It’s got waaaay more hair than I do, which is kind of the point, but it still looks very foreign on my head.

When I walked in the room, I felt serious nerves. Everyone told me it looked lovely and did their best to boost my confidence. My family and extended family are the best. One of my best friends from a previous job didn’t recognize me at first but then once she did, just thought I had cut and lightened my hair, she had no idea it was a wig. That was awesome. =) And I was informed by my sis that I wasn’t the only one there wearing one.

The problem with wearing a wig is that once you have decided to go that route, you just need to own it. In theory it sounds fun! You get nice hair with little work. Change it up if you like. But what I found out is that it is also something you really need to get used to. I felt like I spent the entire 2 hours I was there constantly messing with my hair, keeping stray strands out of my face, making sure it was on straight, adjusting my glasses. Because no matter what they say, glasses and a wig really don’t get along well. By the time I got home, I had a headache starting, similar to the ones you get when a headband is too tight behind your ears. And I couldn’t wait to get the thing off the minute I walked back into the bedroom when I got home. This was a four hour outing. My work days goes from 8-4. I am wondering how I am going to get through eight hours of work when I was starting to suffer at four. Plus the heat this week? Can you imagine having a hairy cap on your head when the heat index is 115 degrees?

So my foray into a life with a wig had it’s ups and downs. I have not worn it since. I don’t regret buying it and I am pretty sure I will try again and attempt to get used to it. Just not right now.

Baby steps.

 

WHAT A DIFFERENCE TWO YEARS MAKE

Tomorrow it will be two years since I was given the diagnosis of CIDP.  The weeks leading up to it were some of the scariest of my life. Not knowing what was wrong with me, afraid I would decline so much I would need constant care; the future was a big black scary question mark.  It has hovered on the horizon of my thoughts, this anniversary of sorts.  The weeks leading up to it though, have shown me how incredibly blessed and downright lucky I am. 

I have mentioned that this summer is the first one since my daughter started kindergarten seven years ago that I have had a summer off with my family. And we have made the most of it! Two weeks ago, we traveled to Galena for a couple nights. One of the things we had done two years ago was hike with goats, and we were up for it again.  In fact, it was two years to the day that we had done it, and the significance of that was not lost on me.  The picture I have of two years ago are a little deceiving. Nothing really looks wrong. In fact, we look incredibly joyful.  It was a moment in time that belied the fact my “hike” that day was pretty unsteady, and I used my husband’s arm for support for most of it. In the second picture 2 years later, the goats were not quite as cooperative to pose on the log and opted for photo bombing, but it was still fun. 

What was even more delightful for me is that the night before, we ate at my daughter’s favorite restaurant that requires quite a few steps to get to, and the memory of that ascent two years ago compared to how easily I traipsed up them now, made me smile for sure.  When I was there two years ago, my only thought was to get through the trip, giving my daughter some good memories, before we returned home to uncertainty and discouragement.  At the time, we were still just trying to get someone to help and take me seriously. 

There would be a couple weeks after our return before I was able to get the appointment at Rush. Those two weeks seemed like a lifetime. I was getting weaker, able to do less and less. I was sure I would end up in a wheelchair.

BUT……here it is two years later and the condition I was in is the polar opposite of where I am now.  Fully functioning, no discernable weakness, spacing out infusions and enjoying the summer to the best of my ability! Since Galena we have met up with good friends in Michigan City for a quick getaway and next week we start to head east with the final destination being North Carolina.  It’s hard to fathom where I was compared to where I am now.  The treatment I received WORKED and continues to work and for that I am grateful. So many others with this horrible disease have had little response to IVig or many of the other drugs used to combat CIDP.  They struggle with insurance. They struggle with the lack of family and friends supporting them.  They struggle with depression. I thank God every day I continue to live a normal life. 

Just a little preview of coming posts……..I have taken the plunge to enter the world of wigs and have one ordered. The very lovely lady who owns the wig shop here locally has helped me immeasurably in deciding what is right for me. She discouraged the shaving of my head, right off the bat anyway, and we are currently awaiting the arrival of my new do, so she can show me the proper care of it and all the little ins and out of wig wearing.  I picked something as close to my own hair as possible, but it will still, in my opinion, look like a whole new me.  We shall see!

 

 

 A “MONTHLY” I CAN LOOK FORWARD TO

I thought I would have more to write about with this blog, but a lot of my posts were just working up to the present. Turns out my life is pretty boring, lol. But, I do have good news.

I am currently sitting for Day 2 of my infusions at the hospital, and it has been 4 weeks since my last one. I have been doing 2 days every 3 weeks since I was diagnosed with CIDP in July of 2021. So this is huge for me. The extra week didn’t affect me adversely at all. I kept monitoring myself, was it harder to open a jar, was it harder to come up the stairs, was there weakness when I reached for something high. It was a no to all of those, so I was quite happy. Maybe an extra week doesn’t seem like that big of a deal, but it is. Especially with a new full time job. It is the first time I am actually paid when I need the time off, but I blew through my sick days by the beginning of May and have had to take 2 days unpaid. So next school year when I am only needing 2 half days every 4 weeks instead of 3, it will be a much better situation.

In other news, I have been talking and texting with a gal who owns a salon here in town that specializes in helping people with hair loss, whether it be because of cancer treatments, genetic issues or whatever. I sent her some pictures of what I have going on and I plan to see her in the next couple weeks. It turns out Delilah is not going to work for me. I tried her on with the altered head band, that would help me from having to clip it to my existing hair, and it was not good. My daughter agreed.

The more I read things and monitor the LPP Facebook group, the more I am toying with the idea of shaving my head and going full on wig. If I were to decide to go with hair toppers or partial wigs, they would eventually pull my remaining hair out. And since I posted the pictures of my hair loss back in February, it has gotten worse. I continue to use collagen and red-light therapy but that takes a while to show results, if it ever will. There is a page I follow that is quite honest and brutal and refreshing, about one woman’s hair loss journey. She recently decided to take the plunge and shave her head and just wear wigs. And hers is very realistic. You would never know it was a wig. And her message through all of this is, you need to do what helps you go through life with no hesitation. That really resounded with me. I have constant concerns anytime I leave the house, that my hair loss shows. Did I comb it the right way to camouflage it? Is the hair spray holding it in place? Is it so windy all my careful work will be ruined? Is my ear sticking out of my hair? Why did yesterday I thought I didn’t look half bad and today I feel miserable about how it looks? There are so many emotions connected to how I look and how I feel others see me. I am very Judgy McJudgy on myself. I want my daughter to feel good about her mom, to look at me and think I’m pretty. To be proud when she might introduce me to a friend. I want my husband to still see the person I was, with pretty blond hair, confident that even though I am getting older, I still got it. Unfortunately, my insecurities leave me feeling none of that is true. So the idea of getting back a full head of hair, even though it isn’t really mine, is certainly appealing. It would bring on a whole new set of insecurities, I do realize that, but that set seems a little better than the ones I have now. They look more like, will people realize it is a wig? Will they look down on me if they do? Do I really care??

So the saga continues. I am anxious to see my neurologist in the next couple weeks to see what the plan is and I am anxious to meet with the hair dresser about options for me. I will keep you posted.

Peace out.

 

A STEP IN THE RIGHT DIRECTION

So, I got a letter this week. Certified. From the government. The Countermeasures Injury Compensation Program has requested more documentation. This seems to be a good thing, on the surface. They are looking at my file, seeing things they need, a real live person appears to be on the job. But when I looked at what they were requesting, my hope flickered just a bit. Because I am quite sure what they want was already sent to them.

1.      Proof of my Covid -19 vaccination

2.      Records from Rush for initial diagnosis

I am 100% sure I sent them a copy of my vaccination card. The whole basis for my claim centered on that. And I have names and dates of the people at Rush who verified they sent my records to this agency.

I have 60 days to respond with what they have asked for. At one point in this holy hell of a process procuring records, I requested they be sent directly to ME, just to have them as a back up. Guess that was a good idea. That might be what saves me here. The letter states they prefer the records directly from the medical facility, but I’m not betting any money I can get that to happen. Especially with a deadline. I will make some calls and try, but my next order of business is copying the records in my possession. It would be lovely to scan them to myself and upload them to the link they provided. My issue is the quantity of pages. Care to guess how many pages of medical records I have from my short stint at Rush? Try 300. When they mailed them to me they printed front and back, but it is still an impressive stack of papers. That will be fun to mail. Certified. So someone will be accountable for their receipt.

This IS a step in the right direction, but I still wonder if after all of this, they might decide I don’t really have a case. That will be incredibly disappointing. I guess I will look at it as glass half full and be glad they have someone assigned to my case, working on it. The email I got letting me know they had “received all the medical records”, now that is hilarious, was on December 19^th, 2022. So it’s been a minute. The way it’s going I might have resolution by the time Anna graduates. She’s in 6^th grade, by the way.

In other news, still no relapse of symptoms from dropping the Solumedrol steroid. Yay! My next set of infusions is this Thursday and Friday and I am going to push hard to have the next ones be 4 weeks out. I hope I can get the neurologist to agree. My summer will go by much smoother not having to be at the hospital every 3 weeks. We got plans, things to do! My first summer off with my family!

Keeping my fingers crossed. And my thoughts positive.

 

THE WAITING GAME

It’s been awhile since I’ve posted. It’s been an uneventful couple weeks health wise and I guess that is always a good thing.

I had my first set of infusions without the steroid and so far so good. I am three weeks out from it and no return of any weakness. Hoping my infusions today and tomorrow prove the theory I can go without. They were right that the Solumedrol caused my insomnia, indigestion and red face. Didn’t have any of those symptoms without it. Yay!!

I am also waiting to see how the light therapy will help my hair growth. I have been using the helmet every other night for 25 minutes. I get the occasional snicker from my daughter and my husband wants to fight with light sabers when I have it on, but that is just how we roll at my house. The instructions say to use it for 16 weeks. I am on week 3. I am also using the hair thickening shampoo and conditioner my sister got me. And mixing collagen powder in my coffee every morning. Which she also gave me. She apparently is on a quest to help my plight. God love her.

I really don’t feel I am shedding any more hair, not in copious amounts anyway, but my current hair situation is not the best. I have good and bad days. It’s that whole fight with the image in the mirror. Hey, it looks kind of cute today! Hey, can I just stay home and hide under the covers? Hey, who the hell is that stranger in the mirror? Sometimes, I just want to cut it super short and go full on wig. Which I don’t have any. Delilah, the topper, sits and looks at me every day. I still have not gotten the nerve to wear her.  She got her own Styrofoam head to sit on. I washed her a couple weeks ago and after she dried she got a little wavy. If only she could talk, tell me where she came from. The fact she is real hair is slightly freaky but also I am so curious who the people are that donate their hair. Was it a happy situation? Someone who needed the money? I remember once when my daughter was younger one of the salons in town still took hair for Locks of Love and she donated a good 10 inches of her hair. I was very proud of her. I help comb out her hair every morning and I am so jealous. It is the thickest hair I have ever seen.

I feel like I will be waiting FOREVER to hear more from the government on if my claim was deemed valid. They basically state when they notify you it was received that they have no idea how long the process will take so don’t even ask.

So not a lot to report on lately. Today’s infusion went smoothly and I was in and  out if there in a bit less than 4 hours.  I did some crosswords. Read a book. Played games on my phone. I kind of used to enjoy the downtime, but anymore I just see it as an interruption to my life.  I can’t imagine having to do this for the rest of my life.  Guess I’ll have to wait and see.

 

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.