My “invisible” diseases
“What is that stuff there on your ankle?”
”What happened to your foot?”
Oh, and the stares. The stares are almost worse than the questions. Stares beget whispers. Pointing - the pointing is great.
“Does it hurt? It looks like it hurts.”
I’ve talked about my scoliosis that I have had since age 12. I have not talked about a disease (well, diseases) I have that are not always visible just like the scoliosis. The ‘invisible’ pain with visible deformity.
Just before the diagnosis of my scoliosis, something else started. I was 11 and in 5th grade. I remember being outside on the playground and someone pointed to my left knee and asked me ‘what IS that?” They were referencing a white patch of skin that was about the size of a dollar coin. I had no idea what to tell them, because well, I had no idea. At some point that same year, my physician told my Mom it was just eczema and gave me the steroid cream betamethasone (Clobetasol) to start using sparingly if it got worse. Eczema, that was a new term in our house. Get worse, it did. I spread to the other knee and both my elbows. White, semi-smooth, kind of flaky, white patches. Oh the itch, the ITCH was the worst, so intense. Clobetasol helped clear it up when it got bad. So from age 11 until about age 34, the two doctors I’ve seen regarding it told me it’s ‘just’ eczema and kept prescribing topical steroids to treat flares. The patches traveled all over my body; elbows, knees, arms, eyelids, back of my neck by my scalp, ear canals, and mostly on the outer aspect of both ankles. Some places would go into remission while it traveled somewhere new, then clear up, and travel again.
It wasn’t until 2015 when I worked in a specialty clinic, where I had close access to some great dermatologists, that I pulled one aside and pointed to my ankle that was extremely red, felt like it was burning from inside out, inflamed, scaling, and intensely itchy and asked the question….”is this really eczema or am I honestly looking at psoriasis?” My gut said this was much more than a bad case of eczema for 23 years. Between the previously mentioned symptoms, my recurring depression, and the extreme fatigue episodes, I had a hunch there was more going on.
”Wow, oh yeah. That’s psoriasis alright. I don’t even need a punch biopsy to confirm that.” Great, a truthful answer and so begins the journey to treatment of a life long auto-immune disease. I began seeing this dermatologist and eventually switched to a female derm in the same office as I also needed full skin mole checks every few years due to family history of skin cancer.
The psoriasis is itchy, SOOOOOO damn friggin itchy when it’s flaring. It compares none to a mosquito bite. The itch is DEEP and you can literally itch so hard that your skin comes right off and you’re left with a bloody plasmic mess that oozes for days. Secondary comes the risk for infection. I have been ever so lucky to have never faced that yet. It takes full self constraint to avoid the itch. One thing that many don’t know is that psoriasis burns. Your skin feels like it was stung by hundreds of fire ants during flares.
Now, not only do I have the most common form of Psoriasis—Plaque Psoriasis—covering about 18% of my total body surface area during an intense flare right now (35% of my arms affected and 27.5% of my legs), but now the early stages of Psoriatic Arthritis. Much like Rheumatoid Arthritis, this causes significant joint pain, swelling, and a host of other systemic body issues. It can affect cardiovascular health as well. How did I know this was present? I’m 38, rounding out the corner to 39 years of age. I’m not OLD, but not a teenager either.
This is coming off a flare…
Getting out of bed some mornings is HARD. Having inflammation in my spine along with scoliosis can be debilitating some days.
I’m stiff most mornings, everywhere. Most notably my feet, ankles, knees, entire length of my spine, and neck. My neck pain continues all day when that part of my spine is inflamed. Sometimes my hands, wrists and fingers are bothered too. Some days the pain and stiffness is not present, other days it takes a good hour or two to feel close to my ‘normal’. I will get random edema in my feet during an intense psoriatic flare or even in my hands. Right now, I’m battling 2+ pitting edema in my left leg shin area and 3+ pitting on the top of my left foot near the site of the flare. Sausage toes and fingers happen too.
How did I get so “lucky” to have the genetic mutation? No idea. There are worse things out there to have. I know that, however, this is my battle like millions of others. Psoriasis affects 2-3% of the general worldwide population. That’s about seven and a half million American’s. Psoriasis is also closely linked to depression and like I previously mentioned, cardiovascular disease. The systemic inflammation greatly places affected persons at risk of damaged blood vessels over time. The visual symptoms of the skin are only a small indication of the disease that lies deep within.
What am I doing to treat it?
As a nurse who worked in Rheumatology, I know all about biologics. I know they’re not horrible, but they definitely have their side effects. Biologics are powerful medications that help calm the immune system by suppressing certain proteins that cause your body’s own attack on itself. So as you see, they suppress your immune system and some have been linked to increased risk for cancers. I’ve been avoiding biologics, and systemic medications. I was told to stop with the steroid cream in 2015 as the skin over my ankle thinned out to a point that it has become much too dangerous to use steroid cream there again. Plus, the scarring that the psoriasis itself plus the steroid cream caused no longer warranted it. Instead I was proposed with other creams with different active properties, all to the tune of several hundred to almost a thousand dollars for a small tube that would maybe last 30 days if I was lucky. I declined and figured I would deal with it. I did, DEAL with it. I haven’t been able to successfully treat it into a long term remission for more than several weeks. Remissions are great and they occurred when I was pregnant, or when it’s spring or fall. Summer humidity and winter dryness are awful for my skin. As well as crazy stressors, sickness (head colds, etc), and many emollients or lotions with fragrance or alcohol in them. I’ve only found a few over the counter creams to help me, but they don’t make the scaly, red, inflamed skin go away. They just soothe and are basically a flimsy bandaid over a deep burning wound.
I have tried changing my diet. That does work, to an extent. It doesn’t fix it or cure it, but it can help. I’ve tried numerous direct sales approaches in terms of supplements with various results. I’ve tried eliminating gluten and diary which are huge known pro-inflammatory foods, which both do cause a response with the psoriasis flares when I consume much of either. I try to steer away from them as much as possible.
I’ve come to the realization that it’s time for either the extremely costly creams, or the very extremely costly (we’re talking thousands of dollars) biologics. The benefits now outweigh the risks. Thankfully, there are assistance programs out there for many of them to help reduce the cost depending on the insurance one carries.
How do you stay active?
I workout when my body allows me and I rest when it tells me. That simple, it really is. My weight battle is in part also due to the level of inflammation my body holds at that moment in time. I walk when my joints hurt, or add in an alternating jog when they’re good. Exercise helps to reduce overall inflammation, so I try to do what I can when I can. Even if it’s just strength training.
All I know is this is something I will have for the rest of my life. It may get worse, it may get better, but will never go away. It’s just another bump in the road that I am learning to incorporate into day to day life. I don’t talk about it much because really, no one cares to hear about it! So why am I writing this blog post? I’m ready to talk about it, ready to answer those questions I get frequently. Ready to show yet again, no one is alone in things they are facing or the path they may be walking.
We all have our “things” we are battling or dealing with. Let’s extend a hand to one another and an ear, and lift each other up when the days begin to test us.
We got this!