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.

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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.

Hurry Up and Wait

It’s funny how we tend to look for simple answers and/or dismiss symptoms even when we know our bodies as well as chronic illness patients do. Either that, or we don’t tie together things that are seemingly random because really, how much more can pile on?

Looking back, I think the latest issues began around/over a year ago. I have had my hair colored fairly regularly since I was 13 years old but since 2017, when I decided to go a “fantasy” gray to embrace the natural gray coming in, it’s been multiple processes at a time. At the beginning of last year, we did a color and the next time I washed it, I felt blisters on my head. I thought maybe my scalp was rebelling against bleach then dye, then dye then tone and shrugged it off. Every once in a while after that, I would find more blisters. I changed shampoos, I stopped using different products, I tried psoriasis shampoos. It would go away for a while, then pop up again just as I would forget about it.

During the summer I thought I had been attacked by a swarm of mosquitoes. I woke up one morning and my back was itching like mad and when I looked in the mirror my back was covered in welts and there were a few on my breast area as well. That in itself is weird because as a general rule- the only time I am bitten by anything, it’s black flies in Maine. For the most part Mosquitoes leave me alone. We used Calamine spray and Vetricycline but they just didn’t go away.

By the Fall, I figured out that my trunk and my scalp were related when I had a flare of hives on the underside of my arms and they both flared too. I thought that perhaps it was an allergic reaction. The only big change was my RA drugs which we had changed over the summer. Since I have failed every drug with the exception of MTX- which failed me- we decided to do a reset and start all over again with Plaquenil. I talked to my doc and we decided to pull me off and she would research before my next appointment and find something else. Long story short, 3 months off of it and I started back up because nothing had changed. In between we had the whole GERD diagnosis and Ulcer to deal with so I put the rest out of my mind treated what I could.

Once the ulcer was sorted out, the itchy blisters came to the forefront again. When they started spreading to my face in early March- I gave up on OTC and home remedies and went to my primary care. She immediately sent me to a dermatologist. He couldn’t see me until April 1st which gave me plenty of time to mope about adding yet another doctor (that bring us to….7 or 8?) to my arsenal and more medical bills.

I finally got to see him and he took one look and ordered a biopsy. His first thought was Lupus and he wanted to test for it. The biopsy came back inconclusive. He is leaning away from Lupus and toward Pimphigus or a couple more things that I can’t pronounce, so when they took the stitches out on the 15th, they took another biopsy, this time of a site near one of the lesions rather than of the lesion. A week later they said they need blood work to narrow down even further so last Thursday I went and had that done. Today is the 29th. Today I get the stitches out from biopsy number 2 but since they had to send my blood to the University of Utah, I don’t anticipate having answers yet.

You all know how it goes- you find something wrong, you try to treat it, then you finally go to the doctor and it’s test after test, waiting in between. Growing up a military brat “hurry up and wait” is a way of life. I thought I had left that behind when my husband got out of the military in 1988. Who knew that in 2019 I would still be living it- just on a different path.

Have You Ever????

I’ve been playing a revolving game of “Have you ever” in my head for a week or more so I thought I would throw it out here.

Have you ever had one of those flares that when it hits you wonder “Is this the one that will take hold and not go away?”

Have you ever thought you should get a part-time job to pay for your medical co-pays?

Have you ever thought that the idea of adding a part time job might be the dumbest idea you ever had because, medical bills or no, you barely have the energy to get through a normal work week?

Have you ever sat there, with your brain fog swirling, trying oh-so-hard to figure out what day of the week it is, or worse, what year it is?

Have you ever, when you are having the hardest time getting up and out of the house, been incredibly thankful that you had a job to get up and go to?

Have you ever had your furry companion snuggle up tight against you and shadow you as if they just know you aren’t feeling well? {On this one- if the answer is no, I would highly recommend it!}

Have you ever felt like your body has betrayed, not just once but again and again and again?

Have you ever reached the point where you thought to yourself “If I get one more diagnosis, I am giving up!”

Have you ever learned to cope with the “Hurry Up and Wait” that comes with medical tests?

Have you ever just taken a deep breat and exhaled on a “thank you”?