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.