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”?

The 2nd New Normal Is…

Finding workarounds for your limitations.

Some days I don’t think about my limitations at all because those I use are second nature. Some days it’s all I think about. Much of that depends on whether or not I am in flare or doing something different. One thing I know for sure is that I am not alone in this.

There are a few things that I rarely think about because they are now ingrained. For example, I have trained myself to get up at 4:30 am- 5am at the latest because it takes a couple of hours for my hands and feet to work well enough to get dressed and be able to function for work. I wear shoes and boots that either don’t need to be tied or that I can leave tied and slip on because manipulating laces is very difficult. In that same vein, I wear shoes that will stretch and socks that aren’t tight because by the end of my day standing and walking my feet and ankles are very swollen. Also, about 75% of my pleasure reading is on my Nook or iPad because I can use their stand and not have to hold them to read. I have been making these modifications to my life for so long that they are now automatic.

On the other hand, there are the things that I have to think about, and if I am being truly honest bother me more, when it comes to working around my limitations. This morning, for example, in order to transfer my laundry to the dryer from the washer I had to grab a pair of tongs because I can no longer reach in and grab those errant socks and such at the bottom of the washer. My tongs also come in handy when I need a glass or a spice from the cabinet at the moment because my hip is flaring and so I can’t get up and down off of my step-stool. I will concede that part of this is because I am short but it also is because I can’t bend and stretch the way I could even a year ago. Instead of my cute pocketbooks, I have to carry a backpack much of the time to distribute the weight across my back so that it doesn’t hurt more than usual. At work, I have to take 3-4 more trips from overstock to the shelves because I can’t carry as much as I used to and when it comes to getting in really heavy boxes I have to either ask someone to lift them to a table for me or open the box on the floor and transfer the product to a table before I can receive it. I miss being able to sling 50-75lb boxes and blowing through a pallet in an hour or two. This way takes significantly longer. For that fact- everything takes significantly longer!

In all of this I try to look at the positives. I am still independent- perhaps too much for my own good- and able to do those things that must be done. I am still able to work for now. I am not totally dependent on anyone for my day-to-day and I am still productive!

So now I ask you- what workarounds have you found for your limitations?

The New Normal Is…

Adaptability.

When you have a chronic illness, one thing that you learn is that what you’ve always considered to be your “normal” life is a thing of the past.

Before I was diagnosed my “normal” consisted of more than 80 hour work weeks while trying to be a good wife, a good mother and planning to go back so to school. I pushed myself so hard that it was beyond ridiculous. At one point I worked over 110 days in a row without a day off and didn’t blink an eye. It was no wonder my body rebelled against me.

In 2005, a month after I turned 38, I was diagnosed with Rheumatoid Arthritis. My first Rheumatologist told me that not only was I seropositive (you can have RA and be seronegative) but my “numbers” were through the roof. He said that if we did not treat it aggressively, I would be wheelchair-bound by the time I was 45. It scared the living hell out of me but being the stubborn mule that I am, I decided that I would not allow it to so much as slow me down. I also didn’t want pity so I only told those that needed to know and tried to keep doing everything I had done before my world was rocked. I tried to keep up my “normal” pace for about 18 months after my initial diagnosis, that didn’t work out so well. My only concession was that I would actually take a day off every week so that I could have some downtime- a new normal. That went on until May of 2007 when I transferred from Massachusetts to Indiana for a new job.

The move afforded me much more free time, more time with my parents and a much slower paced lifestyle, another new normal. I am eternally grateful that I was able to make the move because since then I have been diagnosed with Fibromyalgia, Degenerative Disc Disease and Rheumatoid Lung Disease. With each diagnosis, I would get to a place where I thought I had developed a new normal and another diagnosis would be dropped in my lap leading me to start all over again. I cannot imagine where I would be had I continued on with my New England lifestyle. Each and every new diagnosis takes me farther away from who I was before my journey with chronic pain and chronic illness.

What I have realized is that no matter how much I love a routine, finding our “new normal” isn’t actually about settling down into a new routine. For me at least, the New Normal is adapting each time something new is thrown at me. It’s learning to take a day or two to rest when I need it. It’s picking up 50lb boxes when I can and asking for help when I can’t. It’s going hard when I can and pushing through when needed. It’s all about riding the roller coaster of ups and downs that go with chronic pain and chronic illness and adapting to the good days and bad. It’s about getting out of the “this is what I can/can’t do now mindset” and going with the flow. It’s knowing that no matter how hard we try to keep a routine or make plans, something will pop up to change it without warning. It’s about not letting the unpredictability make you crazy. It’s about cultivating the ability to change plans without guilt, ask for help when needed and talk to the people that matter about what is going on. Right now, for me, it’s about going back to school to learn a new skill-set because I acknowledge that I will not be able to do my very physical job too much longer and hoping that I can power through until I graduate. It’s about adapting my life to my current abilities, whether that’s day to day, week to week or month to month. It’s saying “I’ve got this”, working with your limitations being grateful that you can find a way. Adaptability- the New Normal.