TWELVE WEEKS

 

I can’t believe it has been since March that I wrote a blog.  It’s true that life got REALLY busy once school was over. We immediately left on a three-week trip to visit family in Romania and then once back, other summer activities took over.  Our daughter started theater camp and was in a play, and we also managed to fit in a last hurrah getaway with friends to Galena.  Galena is kind of a tradition now.  The first time we were there, three years ago, was in late June and right before my CIDP diagnosis.  I remember just wanting to get through that little vacation to have some good memories, because I was so scared at my continued spiral down, I was unsure where I would end up.  I had no idea what was wrong with me at that point. That diagnosis came about a week later.

 

Last year when we went, it was amazing to think how far I had come.  The infusions were keeping the disease at bay, and I was living a fairly normal life.  Taking time off every three weeks was a little disruptive, but I kept in mind how much worse it could be. Some people with CIDP are confined to wheelchairs and depend on others to get through the day. Some still deal with weakness and pain because the treatment they receive doesn’t really get the job done. But this year’s trip to Galena was AMAZING. Let me tell you why…..

 

The title of this blog is Twelve Weeks. Why twelve weeks? Because it has been that long since I have had an infusion!  My last one was at the end of May, before we took our trip. The doctor had given me the option to stop IVig and see how I did, since I had been on the oral meds for over a year, and they should be doing their job and handling the CIDP themselves.  I was a little nervous because international travelling can be VERY stressful, and stress can be a trigger for returning symptoms.  I decided my last one would be the one in May and we would see what happened.  Well, what happened was nothing. Glorious, beautiful nothing! I monitored and paid close attention to myself. Was it getting hard to go up stairs? Did I struggle opening things or reaching high? Were my legs starting to drag when I walked? None of those things happened. In the twelve weeks since that last infusion, I felt no difference at all. And that was a relief.

This was a fantastic turn of events, and I was extremely grateful.  I still have my port, I am not ready to go that far yet, so I have been in to have it flushed every six weeks.  I am not saying I ENJOYED my time at the hospital every three weeks, but I did get to know everyone there and it is actually kind of nice to pop in and see my infusion nurses. They are the best.  They are tickled at my progress. I am certainly happy I no longer have to schedule half days off at work every three weeks! No more pulling out a calendar every time we want to plan something to make sure it doesn’t conflict with my infusions.  It is a great feeling for sure.

There ARE a couple items that put a little damper on all this.  I am starting to think that the IVig also helped my LPP. Both are autoimmune diseases, so it made sense the Gammagard I was receiving also helped out my scalp and hair.  It was a little extra boost on top of the oral medicine I take also.  Now that I have stopped that, my scalp has started to flare up.  I was scared I was also losing hair again, but I don’t think that is the case.  Careful styling and a ton of hairspray seems to be keeping things where they should be.  I have not taken the step to start wearing wigs. I have three on standby should I decide to, but I am not there yet. 

The other bit of bad news is that we got the letter from the agency I had applied to concerning compensation for taking the vaccine, and their answer was a big fat NO. I honestly am not surprised. I have checked out so-called vaccine lawyers and not a one of them is taking on the COVID vaccine yet.  It was disappointing though.  I feel at some point in the future, maybe far in the future, a class action suit might tackle this. I was not looking to get rich and rake in a lot of cash, I just wanted my hospital bills to be reimbursed and my lost wages taken into account when I was unable to work. We were EXTREMELY fortunate to stay afloat financially through all that.  But it took a lot of money that we could have otherwise saved for our future.  Getting older is not cheap. 

 

But I digress…..

All in all, life is GOOD! I can’t thank you all enough for reading about my journey. I will still post things, just not sure how often.  CIDP will always be a part of my life. But right now, it is NOT front and center, and for that, I am grateful.

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2023 THE GOOD AND THE BAD

I wanted to end the year with a post of reflection and hope.

2023 certainly had it’s ups and downs. We lost some very special people. A beloved neighbor who was like family, the last uncle left on my dad’s side and an angel named Ava who was a shining star and miracle in our family. And over the span of two months we also lost both our fur babies.

The roller coaster that is life also had some ups this year too. I started a new job that I really really like, we were able to take a nice summer vacation, we bought plane tickets to go visit family for  summer 2024, and I was able to space out my infusions more and more and am currently at six week intervals. That is great considering I was going every three weeks for well over a year.

There still is no word from the CICP on my case. I called recently just to make sure they showed they had all the documents they needed and was told they did. I envision my file sitting in some box with a lot of other files, collecting dust, just waiting for someone to get to them. In the meantime I am one payment away from getting Rush off my back.

Christmas brought family together and then sickness. It’s a good thing we are all on break because my daughter and husband would’ve missed a lot of school. I am not sure how I avoided catching anything. My immune system is supposed to be fragile and not up to par, yet I am the only one not sick, despite being the caregiver. This to me is another sign that perhaps this disease I was diagnosed with might be in remission, or at least controlled completely by the meds I take. Perhaps infusions will be out of my life for good someday. That would be fantastic, yet just today I read a post in the CIDP Facebook group I am part of talking about being in remission for five years only to have it come back with vengeance. Scary stuff.

It was my first winter break with the family, since I now work in the school system as well, and I discovered something about my self. We did some stuff, went to Chicago for a night, did some day trips here and there, but there were a couple days none of us even left the house. Those stay in your pajamas, no make up kind of days. Despite not going out in public and being around no one but my family, I still carefully arranged and hair sprayed my hair to cover all my sparse spots. So apparently I don’t mind being splotchy, pale and eyebrow less, but I draw the line at bare scalp. Vanity is a funny thing. I recently started seeing a massage therapist and she told me about a shampoo she heard about in Mexico that helped someone she knew with hair loss, with almost miraculous results. Hair loss is caused by a myriad of reasons and finding help for those reasons requires different approaches. Male pattern baldness has a different cause than loss caused by an autoimmune disease. So you really need to research and determine if something will even have a chance of being effective. The shampoo she talked about has chili peppers and rosemary in it. It comes in a giant bottle and is under $10. I am doubtful but I got some from Amazon. My hair loss has pretty much stopped from what I can tell, I haven’t noticed a lot of shedding in months. So trying something new that had fairly natural ingredients seemed safe enough. It is kind of green and gloopy and I smell like a pepper after my shower. I’ve been using it a couple weeks now. I’ll have to give an update in a few more weeks.

No big plans for New Years Eve. Lots of snacky foods and trying to entertain ourselves till midnight. It is my daughter’s favorite night of the year, she hates bedtime every night and is a real night owl.  I, on the other hand, will struggle to make it to 12 and will head straight to bed right after.

I wish everyone a Happy New Year. May this year be full of more good news than bad, (which may require no longer watching the news) and the ability to find peace, give kindness and learn empathy. Thank you all for taking the time to read my musings.

Goodbye 2023

 

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.

 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. 

 THE POSSIBLY CONTROVERSIAL POST

 

When something bad happens, it is human nature to look for the reason why and yes, even look for something or someone to blame.  We like to think that life is fair. Which is SO not the case. Non-smokers get lung cancer. Four-year-olds develop brain tumors.  Physically healthy people slide into dementia. It’s a hard life lesson that gets us all. Bad things CAN happen to good people. 

I am not claiming to be a saint. But when I was diagnosed with CIDP, I looked at my health so far in my 50+ years, and found it pretty darn good. My only stay in a hospital up until that point had been when I gave birth to our daughter. I was rarely sick. My only doctoring was with chiropractors.  There wasn’t much ever wrong with me that Tylenol or sinus medicine couldn’t fix.  

So, when CIDP entered my life, I was blind-sided.  It was not something I caught from someone, it had no clear causes, it just suddenly became activated. Like a gene flipped on that had been hiding all along.

 

Strangely, I can not identify the exact moment that I suspected I DID have something to blame.  I think it was before I went to Rush, but I don’t know how much earlier than that. I do know that we connected the dots when we first heard about GBS and that CIDP was the chronic version of that.  I have mentioned Guillain-Barrre Syndrome before.  If you Google it, it states that it could be brought on after an illness, such as influenza or the stomach flu.  These illnesses end up altering nerve cells, so your body sees them as a threat and starts to attack them.  In rare cases, surgery or vaccinations can trigger it. 

It was that last one that caught my attention.  It is widely known, even included in commercials now, that some vaccines have an increased risk of causing GBS. The commercial for the shingles vaccine states it. The yearly flu shot is another one. So the fact I received the Covid-19 vaccine mere days before my finger numbness started,  raised a few flags.  I got the first round of the Moderna vaccine on March 2, 2021.  It was a Tuesday. That weekend was when I first noticed the numbness.  Since we were clueless as to what was happening, I got the 2^nd shot exactly 4 weeks later. We were only doing what was recommended by the WHO.  By then, I had visited my chiropractor looking for answers, like maybe a pinched nerve, or whatever else might cause finger numbness.  He has been slightly perplexed because it occurred in both hands, not just one. SO, no, not a pinched nerve issue. 

After my trip to Rush and acquaintances learned of what I was dealing with, someone sent a text to my husband. It included a link to a government website created by the US Department of Health and Human Services.  It was called CICP. Countermeasures Injury Compensation Program.  Once you clicked on it and navigated around, it listed the Covid-19 vaccine as a valid reason to fill out a claim form.  Which I did.  My doctor at Rush, after learning of the timing of the vaccine and my onset of symptoms, did not seem surprised in the least.  No one in the medical profession, that I have found, would put their hand to the fire and say my CIDP was definitively brought on by the vaccine, but no one ever pooh-poohed the idea either. 

I want to state right now that I believe in vaccines. That in itself has become a controversial, sometimes political statement, in our society.  Everyone is entitled to their opinion, and that is mine.  We had to think long and hard and ask a lot of questions before we decided to have our daughter get the Covid-19 vaccine.  She did just fine with it. As did my husband. What happened to me, if the Moderna vaccine was the culprit, is extremely rare.  

The reasons I decided to pursue the CICP claim are varied. I wasn’t looking to “sue” them for a bunch of money, I was still able to be employed and live a fairly normal life. But if you remember my last post, we owed a crap ton of money in hospital bills. I lost income for all the time I was off. I was losing income currently for my two days of infusions I had to take off work for.  I wanted it more widely known that the vaccine COULD cause CIDP. It is a wicked double-edged sword. The vaccine protects some high-risk people from getting dangerously ill and being hospitalized, and the vaccine also creates high-risk people who have to worry about their immune systems now. Part of the reason we decided to vaccinate our daughter was that school is a germ factory and if she happened to catch Covid she might be okay, but giving it to me was now not an option, as I couldn’t really fight it. 

Anything concerning the government is frustrating.  I initially submitted a claim and requested records from the three medical facilities they required, back in November of 2021.  I won’t bore you with the timelines and tedious conversations with records departments, but it was not until December of 2022 that the CICP acknowledged they now had all my records required for them to process my claim. It was an uphill battle.  And even the email letting me know we were finally all good stated that they cannot estimate the time it will take to review my file and decide if I have a valid case. Don’t even bother calling to ask. I am basically at their mercy. 

So, I continue to try to pay my bills. I have a new job now with actual sick days that I can be paid for and an employer that understands and is interested in my story.  I sometimes wonder how my life would look if our family had decided not to get vaccinated. I actually did get Covid in July of 2022. But this post is already entirely too long so I will save that for another day. 

 

I OWE HOW MUCH??

As much as dealing with insurance raises my blood pressure, the prices set by pharmaceutical companies makes my blood boil.

Let’s take a look at what I receive in my infusions. The med is called GammaGard and it is an immunoglobulin. What is that exactly? It is antibodies, collected from the plasma of healthy people. There are always rumors on the CIDP Facebook page that there is a shortage or will be a shortage. So far, I have not experienced this. It makes me very nervous to think that suddenly it might not be available. The plan was always that my IVig infusions were a gateway to an oral medicine, so getting me to that point is what we are trying to do. More on that in a bit.

Because Gammagard is an immunoglobulin and CIPD is a rare disease, I have a feeling big pharm puts a high price on it just because they can. Not including my 4 day loading dose when I was diagnosed at Rush, I have been receiving infusions every 3 weeks for 20 months. According to my statements from the local hospital, my 2 day visit is roughly billed out at $35,000 each time. I have racked up $945,000 to date. This is where the love part of love/ hate with insurance comes in. Each time I come in and the insurance is billed $35,000 my copay is $110. Which still adds up to quite a bit of money over time but seems do-able compared to full price. So, the stories I see of people’s insurance companies suddenly not covering their IVig completely freak me out. And furthermore, $35,000 seems like a crazy amount.

My dad had IPF, which required a stupid expensive pill that he never could have afforded if not for a foundation we applied to that covers meds like that for people who can’t afford it. He was a retired farmer who lived simply. But why is the pill so expensive to begin with? A 60-day supply runs almost $13,000. Who comes up with these prices?

I started on Azathioprine back in the spring of 2022. It is an immunosuppressant. People who have had an organ transplant take it. It keeps your body from attacking the organ, or in my case, attacking itself. I needed to have bloodwork done every two weeks to monitor my liver enzymes, as this drug can elevate them. We slowly increased my dosage, working towards a goal that would allow me to slowly be weaned off the infusions. As we upped the dosage, I started to have side effects. My enzymes were becoming elevated, and I was nauseous a good part of the day. Lost some weight over that one. It was decided to switch me to another one. There are only about 3 or 4 to chose from so I was hoping this 2^nd one would work. It is called Cellcept and I have been on it about 6 months now, at the optimal dosage. My bloodwork is all coming back fine so I think we have a winner. I am taking 2000mg of it a day and a 3-month supply costs me $60. If I look at the receipt and see what it really costs as opposed to my copay, it is around $2600. Again, why so expensive?

We haven’t discussed my Rush bill yet. That didn’t arrive until several months after my admittance there. I was not looking forward to it. The day it appeared as a notification in MyChart was not a good day. My total bill for my 4 days stay there came to $74,263. My portion was slightly under $15,000. My heart sank when I saw that. How were we going to pay that? My husband has a good job, but I was just part-time at barely over minimum wage. We did not have a ton of money left over at the end of the month.  We basically just sat and stewed over this new predicament. Miraculously, about a month or so later, the bill was adjusted and cut in half, being absorbed by the insurance company. I have no idea why and I was not going to question it.  It is a sad day though when you are happy to have a $7,400 bill instead of twice that.

I will see my neurologist in March, and we will talk about spacing out my infusions to every 4 weeks and see how that goes. I am not sure if it then will go to 5 or at what point I can stop them totally because the Cellcept will keep me on an even keel. Remission is also not unheard of with this disease. That would be nice.

Regardless, the day I can stop spending my days in the infusion center is one I look forward to.  

WHY DID I WAIT SO LONG TO DO THIS???

 

WHY DID I WAIT SO LONG??

I think I mentioned before I am not such a good patient when it comes to starting an IV. I can’t watch for sure. If they have to poke more then twice or “dig around” to get flow, I tend to get lightheaded and have to lie down.  I was poked many, many, many, many, times when we went through fertility treatments to have our daughter. I learned these things about myself. So, sitting for hours with an IV in my arm was less than pleasant.

I learned through the FB group, that some members had opted to have ports installed. I was intrigued but a little leery. I have had things leave my body before, like my wisdom teeth and giving birth, but the idea of implanting something IN my body frankly freaked me out. I did go so far as to meet with a surgeon about what exactly it entailed. The length of the tubing was frightening. The surgeon was a bit of a comedian. In listing the possible complications, he told me nicking my lung was a small possibility, but he rarely had that personally happen and it was mostly skinny women who smoked. I was neither of those but I still was apprehensive. I decided to just put that on the back burner.

Until the infusion I went in for that took seven tries to get a good line. It was horrible. They had three different people come in to try. I was near tears. It started to really make sense why the pharmacy waits until an IV is good before they mix the meds. I was wondering if I was actually going to get my infusion that day. Getting a port started to sound like a really good idea.

So, I did. I have had it now for a year and I love it. The procedure was short and had no complications. I was sore there for a few days, and it was definitely strange to see this bump under my skin. I was scared to touch it. I was scared to bump it. The surgeon had to guesstimate where my bra strap would lay and he was close but not perfect. But it didn’t really matter. Nothing bothers it. Over time I feel it has got a little more prominent and you can see the three little bumps they triangulate between to find where to insert the needle. There has never been an issue getting blood return and be good to go.

I was lucky, there are horror stories about port issues. Infections are a big thing. Sometimes it works for awhile and then problems start. I still am glad I did it. It makes my infusions smoother and even shorter. The pharmacy is willing to start the mixing procedure when I arrive since accessing the port literally takes two minutes and is never an issue.

It is one of the best decisions I have ever made.

 

CIDP AND TURTLES

My eleven-year-old tells me Facebook is for old people. I just laugh. It’s true, I don’t use Instagram, TikTok or Snapchat. And Facebook is a lot of unrealistic posts of “perfect” pictures, but it is also a good way to connect with others. The first thing I did, before I even left Rush, was search for a group about CIDP. After I requested and was accepted, I hungrily read every post on there. I learned a few things.

1)     CIDP presents as a wide range of symptoms

2)     I was one of the lucky ones

3)     A turtle is the mascot

The turtle represents slow and steady. A variety of members in the group talked of being in wheelchairs, using walkers, falling, or stumbling frequently, and being on disability. Some people have been on infusions for years. You could have home health come do them at your home, you can do Sub-Q, which you do yourself. A lot of them constantly fought with insurance for their treatment and were even denied. A few had no support from family and friends who were ignorant or intolerant.

The majority of people have no idea what CIDP stands for or what it is. Guillén-Barre syndrome is the more common little sister of CIDP. What I have is the chronic form of that. One or two people in 100,000 are affected by it. It was certainly never on my radar before I got it.

After reading the posts in the FB group, I realized I was one of the lucky ones. I would find out in the coming months that I could live a relatively normal life. I showed very few symptoms between infusions and though my blood pressure would rise when I had to deal with insurance, I still managed to get all my treatments covered. My neurology team seemed to know what they were doing and had a plan for me. I definitely had the support of my family, friends, and employer. Despite the horrible disease I was diagnosed with, I still felt blessed.

 

 

ON WITH MY LIFE

So now I’m home.  Now what?  The doctor at Rush had decided that in order to keep me maintained with no relapse, I should receive IVig infusions every three weeks, for two days in a row.  I was relieved to discover I could do this at my local hospital and not have to drive a long distance.  It was 10 minutes away.

 

The three weeks passed, and I was scheduled for a Thursday and Friday in Outpatient Infusions on the 2^nd floor of the hospital.  We showed up, were taken to a room and waited. We were there maybe 5 minutes before someone from the pharmacy came in an informed us my infusions were not cleared by my insurance yet.  I was very upset.  This was all very new and scary and I had no idea what would happen if I could not receive my treatment.  They sent us home with the hope that it would be cleared up that day and I could come back the next. I have mentioned previously my love/hate relationship with insurance companies.  This would not be the only time it came down to the wire to get approval for my IVig.  Only so many are approved at one time and each time they had to be renewed there seemed to be hiccups. I was set up to be under the care of an RN at Illinois Neurological Institute since my doctor at Rush was not covered under my insurance. I even sent an impassioned letter to my insurance requesting my doctor at Rush to be approved, but their response was there plenty of good neurologists in network and just NO.  But INI  had no privileges at my local hospital so anything the RN ordered, my infusions, bloodwork, etc., needed to go through my PCP and approved. Lots of room for miscommunication and ball dropping.  Luckily everything got okayed and I went back the next day.

 

Care to hear exactly what happens at my infusions? It started out quite rocky. I was like some exotic animal they had never seen before. The infusion process for IVig is a little complicated until you get used to it. It uses special tubing, it gets infused at differing rates, and my vitals are taken every 30 minutes to make sure I am tolerating it.  I really have nothing but good things to say about all the nurses who have had to deal with me. There was a learning curve for sure.  And I am not a good stick. As in, my veins like to roll and hide. Makes starting an IV a bit of a challenge sometimes.  It usually took a couple tries. I can’t watch when they do it and if they take too many tries, I get woozy. Not the best patient.  Since the infusion were over two days, I would wear the IV home.  Which sounds horrible. And it was. Try sleeping peacefully with that on your arm, trying not to roll onto it.  But thinking about going back and looking for a good vein on the second day sounded worse to me. 

Each day I would show up they would have to access my vein before they would call the pharmacy to start mixing my meds. They would not start until then in case something when wrong and I didn’t end up being able to be infused. The medicine is no good to keep around.  And very expensive to waste. I eventually saw a bill for my infusion appointments.  For the two-day period I was there, the hospital billed my insurance around $34,000.  (I will revisit that little fact in a later post).  Bottom line, they weren’t mixing anything until I was ready to go.  Once accessed I received pre-meds that consisted of 650mg of Tylenol, Benadryl and Solumedrol, which is a steroid.  I also needed a bolus of saline to clear my veins before they started the big guns.  I would sometimes sit quite a while waiting for the pharmacy. Apparently mixing up this stuff is a major process. Slowly swirling it until it dissolves in the liquid. I think someone just stands there and slowly swirls it.  Once we got going, the drip starts quite slowly, increased every 30 minutes if my temp does not rise and my BP stays within range.  From start to finish, my day at the hospital ranged anywhere from 4-5 hours.  I will add here that as time has passed, the norm nowadays is mostly 4 hours, sometimes even sooner. 

 

I started back to work, and life continued.  I felt pretty much back to normal. It was miraculous.  The three weeks between infusions I stayed stable.  I felt very lucky.