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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.

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.

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.