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Let’s Talk About Invisible Illness

I started to make this a post on Facebook- then it grew and grew until it had a life of it’s own so I am dropping it here. If you have anything to add- drop it in the comments. I am sure I missed something so I look forward to added perspectives. Now here we go!

Let’s talk for a moment about Invisible Illness. It’s called Invisible for a reason. You may see a change in our gait, you may see that we are moving body parts with care or more stiffly, you may see that we look…puffy (that’s swelling friends- not water weight) or any other subtle change. Here’s the thing- what you see is only an infinitesimal part of what’s going on.

Let’s say that we were to brace (not cast because nothing’s really broken) up the parts that are hurting or use the assistive devices that we are in need of to move around. Here’s what one of my flares may look like, from top to bottom:

1- We start with a neck brace because not only does the neck hurt from Degenerative Discs but moving it impinges on the nerves and cause numbness from the neck to the fingers.
2- Next, we add slings to immobilize the shoulders on both sides because the shoulders hurt to raise or lift anything.
3- Wrist braces on both sides because both hurt but the right is worse than the left so anything we can do can be done left-handed.
4- We can’t brace ALL of our stiff and aching fingers because that would be ridiculous so instead we carry hot/cold packs to minimize swelling and/or stiffness.
5- If possible, the lower back should be braced down to the S1
6- There is no brace available for the hips that would allow both to be braced and since it’s bilateral (though the right is worse than the left thanks to those pesky bulging and herniated discs in the lower back) a walker or cane is necessary- but wait- with both shoulders and wrists in pain we can’t push/lift the walker!
7- Hey- GOOD NEWS! The Knees are in okay shape as long as you don’t have to kneel down on them!
8-Next are the ankles. Let’s brace the left because it’s worse than the right and just thrown an ACE wrap the right for support.
9- When wrapping that right ankle, be sure to wrap all the way down to the toes because while both feet are swollen and painful the right foot is so swollen our regular shoes won’t even go on those feet. Another option would be compression sleeves and a boot- or two.
10- Finally, since those shoes won’t fit and your hands don’t work, be sure to wear some slip-on, or velcro-close, shoes that make up for their lack of any semblance of style with comfort geared toward swelling.

I would be remiss if I didn’t add that often there is more than one illness involved- so in my case you may have bronchitis/shortness of breath during this thanks to the RLD or, if it’s the Fibromyalgia that’s in an accompanying flare you can’t stand to be touched because even a hand to steady you can feel like you are being hit with a baseball bat.

Now- close your eyes and visualize yourself or a loved one in this situation and commit it to memory. Can you picture it? Now- if you saw a stranger that looked like this your first thought would be something to the effect of “Damn- I wonder what train hit them!” or- “Poor person, glad I am not them!” If it were you- would you get out of bed? If you got out of bed would you go to work/school/social events?

Okay- now let me throw in a capper. Pain is exhausting. Exhaustion exacerbates pain. It’s a real bitch of a self-feeding cycle.

Here’s what- many, many, of us feel like this every single day. Many more of us are blessed enough to have ebbs and spikes in our Chronic Illness journey which means that some days we feel “okay” (for us) and some days that freight train runs right over us and we are subject to a “flare”. The only kicker is that a flare can happen in an instant and we never know when/where/what we will be doing when it hits or when it will end. We can only endure it as best we can.

Most of us function through the pain every single day. As years pass living with chronic pain, often our tolerance for the pain increases so that what a “normal” person considers an 8 on the pain scale is our 5 and our 8 is a “normal’s” surgery with a butter knife and no anesthesia. We do our best to live our lives to the fullest- knowing that we can no longer keep all of the balls in the air. Whether it’s in our social life, our home life or our work life, we can’t do everything that we would like and that at some point we will disappoint someone that we care about- we can only hope they understand. We also know that by just looking at us, people make judgments about how we look, what our capabilities are, how motivated we should be and more.

So please, the next time you see someone, (whether you know them or not) before you decide that they are; lazy, malingering, antisocial, undeserving or any other negative judgment that you feel is your right to make, picture yourself in the description above.

The next time you are disappointed in a friend for not making or keeping plans, a colleague for not moving as quickly as you would like at a task, a family member for not hosting whatever event- remember that visual.

Unless you are in our skin, you have no idea what we are dealing with and I, for one, would not wish it on anyone. Thanks for making it this far and I hope it gives you a glimpse into Invisible Illness and Chronic Pain.

Down for the Count

Well, it’s happened. I thought I had escaped the “end of rush” winter bronchitis but alas, it caught me. Let’s be perfectly transparent. As much as I would like to to blame Winter in Kentuckiana where it can be 60 today and snow tomorrow, or working with the public, or jokingly claim the Coronavirus made it’s way to the middle of the country, I can do none of these. This is 100% my own fault.

Here’s the thing. I know that I do this to myself just about every year. From Thanksgiving to MLK day I am going non-stop. Work amps up as we head into finals, prep for Spring semester, hire temps, train temps, bring back and update our seasonal staff, fill online orders, do last minute ordering, stocking and whatnot, work 7 days a week for a few weeks, work open to close as we extend our hours by two hours, then again for the first week of class for a 3rd hour, fill back orders, wait on customers and attend to the million little details that are involved in the start of the semester. It’s exhausting just thinking about it. Now- add in taking my finals, braving a “wintersession” course (16 weeks compacted into 4) and starting Spring term myself and it’s more stressful. Now- for this year’s kicker. I lost my assistant manager around Thanksgiving to a well deserved promotion and it took about a month to get the new Assistant Manager that I wanted, then start bringing her up to speed left me scrambling and feeling behind the 8-ball through all of the Rush.

By the time it was over I was already starting to develop a bit of a cough. Nothing major- just a random coughing fit and shortness of breath going uphill to my car or across campus to class. I thought maybe it was just a flare of my RLD thanks to the bi-polar weather and being run down from the hours spent working and studying. So- to quote Queen Elsa, I “Let it Go” and pressed on. Next up came Inventory prep. We normally do our inventory around the mid-late February but due to scheduling problems with the inventory company- it got pushed up to this weekend. That means we scrambled- again- to get ready for inventory which happened yesterday and I ignored it as the coughing, wheezing and tight chest became more and more frequent. When inventory was finally over yesterday afternoon I came home, sat in my recliner with the puppies on my lap and passed out for a solid four hours. I woke up, coughing my face off, and wandered around for a bit before settling in for a beloved movie (The Intern- if you haven’t seen it, it’s really sweet) took a little cough medicine and vegged. Last night I threw caution to the wind and took Mucinex Nighttime. I fell asleep at my normal time (around 11:30) woke up at my normal time (4:15-4:30) but it was an impressively deep sleep and I felt really rested. I got up, watched a movie (Thanks Hallmark Channel!) and one of the shows on my DVR and was ready for a “Nap”. My nap was another four hours long and nice and deep as well. Now here we are. I have a test that I have to take today for one of my classes then the plan is to veg out again. I can’t miss work tomorrow- my Assistant Manager is off so I am on my own to open and close- but Tuesday I am going to work for a conference call then heading home until time for my class. I am hoping by taking time today, medicating and working tomorrow and taking it slow and then relaxing on Tuesday I can kick this before we get to the “must take steroids, antibiotics and time off work” phase.

Thankfully, the husband told me to stay home, ran my errands for me, made sure I had my favorite Lipton Extra Noodle soup and is encouraging me to chill. So- wish me luck!

The Semester is OVER!

And I am eternally grateful to have survived it. I finished the last of my GEN-ED requirements (YAY) and even squeeked out a B- in the Geography lab. Don’t ask me how because I am the least science-minded person you will ever meet. For Spring, I am taking one Wintersession Sociology (12/23-01/11) class and two classes in regular session. One is another Sociology (so I can work on that minor) and one is the last class I need for my Public Relations minor. My adviser has asked me to take it easy and just take classes I am interested in for fun sprinkled in there, so in the Summer session I am taking Yoga and Tai Chi. I am worn out but if I keep up this pace I *should* graduate in May of ’22. My initial goal was to graduate by the time my nephew did- this would put me a year ahead of him.

And now it’s not only the end of a year- but the end of the decade as well! I am taking the next few days to really reflect on the last decade and think about things I would have done differently. Then I will set goals for the upcoming decade overall and for 2020 in particular. I say goals, not resolutions because resolutions, once broken are gone. Goals, on the other hand, can be reset and worked toward all year long. I will report back on New Year’s Eve as to what I am setting for goals.

How about you? Are you doing a deep reflection? Setting Goals? Making resolutions? Do you care to share them?

Have a lovely day gang!

Catching up

Hi everyone! It’s been a busy, busy few months. I spent most of my summer running back and forth between two stores, helping to transition our local community college system’s store into a Barnes & Noble College store. Fortunately, I have an amazing Assistant Manager who held down the fort in the days I was away.

Working both stores went right up to my own Rush which went by in a flash but then bled right in to my Haunt season. It’s been both exhilarating and exhausting. I am also taking three classes this semester and I’ve taken up making wreaths because I just don’t have enough to keep me busy!

This is a tough semester in terms of classes. I have a Lab for last semester’s Geography course. Science (and the accompanying Math) is very difficult for me. I am also taking a Public Relations class and a class called Bystander Intervention. The book for Bystander Intervention is called We Believe You and it’s utterly heartbreaking. It’s a collection of stories from men and women who have been sexually assaulted on college campuses. It’s a very hard read but it’s important to see that it goes on and how these people are left scarred forever.

As for Haunt Season, I am a bit torn. I love it so much. The cameraderie, the performance aspect, scaring the daylights out of the customers- there’s just nothing like it. On the other hand, I am most assuredly feeling my age. We are only doing a total of 19 performance nights this season- 15 remain as of today- so it’s a very short period of time but toward the end of the nights my feet are groaning, my back tightens up and I am ready for my bed. My goal is to make it through NEXT season- which will be our Haunt’s 20th season, then I will consider retirement.

I hope this finds each of you well- and doing something that you love if only for a little bit.

Chasing the Cure

I am a TV watcher to the nth degree. When I was an itty-bitty kid, I could spot logos and sing theme songs way before I should have. My teen years were more hit or miss but I still remember the moment MTV was born- “Video Killed the Radio Star” anyone? Then I became a mom and after Barney, Sharon,Lois and Bram, and Carmen Sandiego the TV went off. There were a lot of years where I was too busy; working 80 hours a week, raising a pre-teen then teenager, going to school and being a wife that television fell to the wayside unless I remembered to set it on my VCR-remember those? Once my life took a major turn I found television was much better quality than I remembered overall. I actually rediscovered my love of TV when my health started to go nuts. In February 2005 (Superbowl Sunday to be exact) after weeks of tests and pain I landed in the hospital with pancreatitis stemming from serious gallstones. During the 5 days I was there I had room by myself and I would wake up in the middle of the night before my late night pain med and flip on the television. It was then that I found the Food Network. During my week of recovery, laying on the couch in between dozing I had the tv on day and night. Six months later I was diagnosed with RA and began this long medical journey. From then on any time I have a flare, or I am sick or whatever, I am cuddled up in front of my TV and the rest of the time I wear my DVR out! Now, I realize that there are not a lot of people that watch like I do, so there is an actual reason that I am talking about this today.

For about a month now TBS and TNT have been advertising a ground-breaking series beginning next month that could help every single one of us in the #ChronicIllness community. This 10 episode series is called Chasing the Cure. Hosted by esteemed journalist Ann Curry, Chasing the Cure seeks to harness the power of crowd-sourcing alongside the medical community to find answers for people who are living with debilitating illnesses that are undiagnosed or may be misdiagnosed. I am so fascinated by the possibilities presented by this project and I am wondering if we can get some insight to our own issues as we watch and follow along on the interactive website. I even made the decision to submit my information to see if we can find out what causes our autoimmune system to go so wrong in so many ways.

Chasing the Cure premieres on August 8th on both TBS and TNT at 9pm. It can also be streamed live on either station’s app. The interactive website can be found here: https://www.chasingthecurelive.com/ If you are interested, you can sign up and be a part of the crowd-sourcing and there’s still time, if you are so inclined, to submit your story. If you do, let me know! I would love to follow your journey.

Word of the Day or Another New Normal

Unpredictability.

Lady Gaga said it beautifully in this meme from Mighty Well’s Instagram

Meme Credit: MightyWell Instagram See more here

I saw and shared this meme on my Facebook page yesterday and I thought it would be appropriate for our next “New Normal” post. Before we get into that, I want to note that in researching them in order to give proper credit, I found their site (which is primarily a site for PICC line wear and accessories) which has a terrific blog that’s appropriate for any of us who live with Chronic Illness. You can check their blog out here and they also have Facebook, Insta and Twitter presences which you can find on the blog.

Additionally, I wanted to note, and publicly thank Lady Gaga (link to her twitter) for being so open about her battle with Fibromyalgia and both the physical and mental repercussions of living with chronic pain. One of the many articles about her battle was a well done piece in Forbes Magazine.

Now- on to Unpredictability. One of the first things that we learn, and one of the last things that people outside our community see is the unpredictability of living with chronic pain. Some days we feel like a rock star, some days we feel like we are in the 9th circle of Hell. The thing that outsiders, from people who rarely see us, to our bosses and colleagues, to those who are learning to live with this right along with us don’t really get is that we can be in bed unable to move on Monday and on Tuesday able to function like most others. Sadly, that’s why they doubt us when we have an invisible illness.

Another common example is as simple a task as grocery shopping. We park in our handicapped space, grab our cart and head in just like the Normals. The difference is that we are leaning on that cart for balance and that as quickly as by the time we finish we are in such pain that after we load the car we have to stop and take a few minutes to let the pain ease or settle into it before we can even start the car. Are there days that we can go in and do a “big shop” and be at the same level of pain as when we walked in? Yup. Can we predict that when we step a foot out of car? Absolutely not. “Joe Parking Nazi” can see us park in the handicapped spot (because we have hang tags or license plates that allow us this privilege) when we get there and go inside. They see us walking like a normal or with a slight adjustment to our gait but don’t see a wheel chair, walker, cane, or other assistive device and assume we are doing something wrong. They see this and then they rant on social media about people “abusing” the plates/tag, try to call us out in local groups, say nasty things to us as we try to go inside, attempt a confrontation or call the police to have us addressed- whatever.

Another example of unpredictability is in what body part hurts the most. My current flare is in my hands, wrists and feet. To function with it I am taking those parts easy. My last flare was in my neck, back and hips. To rest those is an entirely different method of self care. We never know where the pain will make itself known.

The same goes for the fatigue that goes hand in hand with chronic pain. I have explained to my family members that it’s a vicious cycle. Pain is exhausting. Chronic fatigue exacerbates the pain. Once you get on that ride, you just can’t get off of it and you never know when it will hit. I don’t know about you but I can be having a GREAT day and all of the sudden- BAM- exhaustion hits me like a ton of bricks and if I don’t address it immediately I can plan on being down for the count within a few days.

The only thing I can say is- with chronic illness- you have to get used to life being very unpredictable because you can just never know what’s coming next.

It’s a Staycation!

Well, I am half way through a staycation. Theoretically I should be on Virginia Beach but sadly, my poor dad blew a staph infection where they repaired his Achilles Tendon and though they wanted us to go ahead and go, we girls decided that it would not be the same without Mom and Dad so we asked that they try to get a refund.

If you were with me on my Blogspot blog, you know that Dad went through a tough time back in February and March. If you are new to my blog, you can read about it here, beginning on March 6th. 10 weeks after his surgery, roughly 14 weeks after the initial fall, he went to the Neuro and was released from the back brace but complained to us in the family chat that the ankle had been hurting for a few days. The next day it was bad enough to take him back to the doctor. They took one look at the site and rushed him to the hospital and right into surgery because the site where they reattached the Achilles had contracted a staph infection. 10 weeks is a long time after surgery for this to show so they were very concerned. He was in the hospital for a total of 5 days during which they did 3 surgeries and ended up having to take not only the repaired portion of the Achilles but the rest of it as well. He was on IV antibiotics for the duration of the stay and went home with a port in which he had to go back for antibiotic infusions for over a month. As of yesterday, he has 30 infusions left to go.

One sister and my son decided to give back their vacation and hold it for another time. The other two, one husband and mine and I decided to take our vacation anyway. I used mine to go back down to Mom and Dad’s and then come back home and spend the rest at house. I’ve been fighting a flare for weeks and when I go back it’s going to be straight-out at work through August so rest and relaxation are in order. Monday was a “stay in my pajamas, nap and binge television” day. I must have needed sleep because where I normally sleep about 4 hours a night and take about an hour nap, I slept almost 12 hours off and on that day.

Tuesday was essentially a “lazy day” as well but I did get a few things accomplished. Now it’s Wednesday. I have more errands to run. Tomorrow is trash day so I want to get some decluttering done as well. Thursday I also plan on hitting my craft area and getting that in order. I have so many projects begun but not finished, so maybe it’s time to re-evaluate which I am going to do and which I am going to scrap and give the supplies away. Friday is supposed to be the only actual nice day we are to have this week so we may head up to the Cincinnati Zoo. If not, it will be a prep day for going back to work and back to school. The weekend, we will relax and have a nice weekend, just the two of us and the pups.

I’ve needed this time off. Days to just chill out and not worry about work or school. Day to spend time with my husband and my thoughts and my books and my dvr and my puppies. It’s given me time to rest, time to relax and time to reflect. I think we all need that at times. Until the next! Be well friends.

Random Swelling, Random Thoughts …

Do you have somewhat random swelling? My ankles and feet like to swell, especially when I am on them a long time or when it’s super hot and humid out. My ankles become cankles and my feet look like softballs with little round appendages. Summer in Kentuckiana while I am hard at work? It’s a perfect storm and a relatively painless way to flare.

I am not here to complain about it. It doesn’t necessarily hurt. Once they are fully swollen it’s a little tender to walk on but it’s only really uncomfortable when I try to put on shoes, which with the whole working thing, is unavoidable. What’s interesting is how it feels when it’s happening. It doesn’t matter if it’s when I take my shoes off after a long day or if it happens overnight it’s such a strange sensation.

I woke up around 2 this morning. I started rousing because I was swelling and my ankles were getting stiff but once I moved Fen took a flying leap on top of me because, of course, when Mommy moves it must be time to get up! I let the puppers in and out and then plopped back down to try to go back to sleep. It’s at rest that I am most aware of what’s happening to my appendages. So how do I explain this? As the sub dermal tissue begins to grow inflamed, you can actually FEEL the skin over top stretch bit by bit. It’s that part that kind of weirds me out. Slowly, slowly, over several hours, the skin makes room for the tissue beneath as it grows inflamed. Stretching like a small latex glove over large hands, before eventually easing into quasi-normal. I say quasi normal because since I was diagnosed with RA my feet have grown a full size and a half, two and into a wide when I am swollen.

It makes me wonder- because random tendrils of thought are the way my brain goes- I wonder if this is the way our skin stretches when we gain weight- only much, much, much more slowly. Having gained more weight in the last half dozen years than I would ever publicly admit and with little success in shedding it, I wonder- if that stretching of the skin were to happen as quickly as my random swelling- would it serve as a “warning” to watch what we put into our bodies? Or would we perhaps learning to ignore it like we do the proverbial “burrito baby”? I am sure that’s a question that will never be answered but in the meantime, perhaps it can roll around in the back of my head when I crave dessert.

Today’s moment of gratitude is for the awareness that we learn when we are diagnosed with a chronic illness. Before this I took aches and pains as a sign of the need to slow down but never took them seriously and rarely saw them coming. Now, I find that I can anticipate when a flare will start. More importantly I can feel when I am pushing too hard early enough to make a decision as to whether to push through or to back down. It’s a gift that I would never have been given had I not had to learn to slow down and take care of myself. I have to be thankful for that.

Prednisone Giveth, Prednisone Taketh Away…

A few weeks ago, I got my new diagnosis. The Dermatologist put me on long term antibiotics and a cream in hopes that the treatment would take. It just so happened that three days before that (on Friday) my Rheumy put me on a 12 day tapered pack of Prednisone for the flare I had been in for a few weeks. By Monday when I saw the Dermo, it was starting to take effect. I started the antibiotics and was truly hopeful! No new lesions, flare cleared up, and other than the usual munchies, all was going well. Then the prednisone tapered off

Slowly but surely over the last two weeks, everything is coming back. The flare is gradually overtaking everything again. It’s starting the same place as last time- my right middle finger. It’s SO weird. When I close my fists, whether just as reflex, sleeping or even holding something benign like a pencil, the middle finger gets “stuck” closed and trying to open it normally is painful. That means it takes either opening hard or using my other hand to open it. When it does come open, it’s feels like…..when you release a rubber band, but the release of pain is instantaneous. It’s much less painful when it’s straightened. But I digress.

In addition to the flare returning, the blisters are returning too. My back, my chest, my scalp and my face. I am not sure what to do. I am seeing the dermo again on Wednesday morning but the thing that I am not sure about is my scalp.

I seriously considered, before the medications when they told me that heat would exacerbate the blistering, shaving my hair off. If you know me at all, that’s a big, big thing. I have a serious love/hate relationship with my hair. I hate that it’s thin/I love that there’s so much of it. I hate that it’s stick straight/I love that I can do a lot with it. I hate that it takes forever and three days to grow/I love that I can put it up and go when needed. The only time I’ve ever thought about something so drastic as cutting it all off was when I was losing it to Methotrexate. At that time, I freaked out and had it cut really, really short. I had such instant buyer’s remorse that I was this|close to going back inside and having them put in extensions. Instead, I sucked it up and dealt with it for over 2 years while I waited for it to grow back out. For me to even consider it so that is pretty huge.

Now I am back to square 1. My everything itches like mad, especially my head. There are blisters in the same old areas and I am wondering if, with the coming summer, I should give up and shave it so that I can apply the topical cream to it without looking like I haven’t washed my hair is who knows how long. The topical cream seems to be effective in treating the blisters once open so it’s a Catch-22.

On the bright side- and of course there is one, I know that predisone helps a lot. I know that I can throw my hair up until I make my decision, and I know that I have a whopping 19 days I will get a week with my parents, my sisters, their spouses and kiddos and most importantly, my son. I also have hope that by then I can have something, even if it means prednisone long term again, that will put me on the path to feeling human again. And so it goes…..

Hoping this finds you well and with amazing plans for this summer.

And So We Have a Diagnosis

I am not going to bore you with the details but suffice it to say my immune system is on the move again. Now it’s begun attacking my skin. <sigh> This lovely disease is considered rare because less than 1 in 20,000 contract it and most who do are significantly older than I am. My dermo says that this means I have to be very vigilant about seeing my primary care and getting my routine screenings done because when it happens in my age bracket, somehow there are higher instances of cancers.

The good news is that I when I got the diagnosis I had already started a course of Prednisone for my RA flare and so the treatment is pretty simple: long term oral antibiotics and a steroid cream for flares. No-frills, very straightforward. I have to time out when I take my pills because they can negate my iron for the anemia and multivitamin but other than that, it’s pretty basic. Oh- and it can go into remission but can come back at any time. Also, I have already been screened for the BRCA genes as part of my 23 & Me kit and it found no mutations so that’s ~~some~~ slight peace of mind in terms of breast and ovarian cancer.

So- since this is yet another chronic illness and not something that we can just treat and go, I am giving myself a month to… I don’t know, mourn? To be sad, cranky, angry. To be sick and tired of adding more and more ways my body is betraying me. To wallow in the “It’s not fair” of it all. Then- it will be time to snap out of it and get on with my life.

After my month I have a good and busy summer to look forward to: I have our biennial family reunion vacation this summer. My parents, all of the siblings and their families and Josh will be together under one roof for a week. I cherish these weeks, more so each year because with most of the nieces and nephews being 18-31, we don’t know how many more we will have them all with us before life takes over and they are busy. Josh already missed the last one and this time his fiance and the kids will miss. I am also taking the summer off of classes so that I can take that vacation but I already have my fall books so I can start peeking ahead. I will also be a bit crazy busy with transitioning another store from our competitor to a BNEd store when we officially take the contract just after July 4th. The first conference call for that endeavor is today so it’s going to be a doozy of a project. That will flow straight through to back to school so I really don’t have time to wallow more than a month.

Today is Commencement for the university so it’s going to be a very, very long day. I have to open the store, then the conference call 10-12. After that I am packing up the car and heading to Freedom Hall over in Louisville to set up our pop-up shop and work there until the grads have walked and their guests are gone. The ceremony begins at 6:45 and runs about 3 hours so I should home (after dropping everything back off at the store) by 11pm. If I am not too wired I will get a little sleep and be back at it Tuesday morning for the first day of classes. I also need to open up a part time position because one of my students is leaving in two weeks. They graduate tonight and have found a full-time job.

There’s just no rest for the wicked.