For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if you will, of seeing myself hiking again, or being able to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.
One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.
However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.
I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?
Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.
But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.
I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.
With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.
Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.
To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.
For fuck’s sake!
Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?
Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.
For fuck’s sake.
I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.
So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.
Well… I say NO.
I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.
Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.
On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.
Let me be okay, if only for awhile.
I read an article online this morning about how patients with RA never know if it’s going to be a good day or bad, and can’t help but agree how very true that is. I wish there was a way to know upon waking if my day is going to be fabulous or terrible; not in terms of mental health, but in joint inflammation and pain.
Two days ago I found out that the increasingly bad pain in my right foot over the course of the last three months was due to a torn tendon. Basically I’ve been continually aggravating it by ignoring the pain and walking on it without treating the issue. Of course a torn tendon doesn’t really have a treatment option. It’s really just wrapping my foot tightly with a bandage, and buying an expensive pair of shoes with better arch support. On the day I found out I ended up doing a little more waking than I should have, so I figured I’d be in a fair amount of pain the following day.
But yesterday I woke up feeling great. Sure, my foot was still sore from the tendon issue, and per usual I was having light flaring in my hands and elbows as a result of my RA. But it was manageable.
A few months ago I made the decision to be as active as possible on days that I felt good. If I woke up feeling less pain then usual I would make the most out of my mobility, I’d get the laundry done, or clean the house a little more thoroughly. That way if I had a cluster of bad days I wouldn’t feel annoyed that my house was dirty, or run out of clean underwear.
And so when I woke up feeling good yesterday, that’s exactly what I did. I washed a load of laundry, deep cleaned my cats litter box, and swept and mopped my floors. After that was done I even baked a batch of peanut butter and chocolate chip cookies for my friends whom I was seeing in the afternoon. I felt great.
When 1pm rolled around I hopped on a bus and headed into town to the good movie theatres, where I planned to see a $6 movie with friends at 4. I left early so I could stroll through Bed, Bath, & Beyond where I had a leftover Xmas gift card with a balance of $50 remaining. The store was about six blocks from the bus stop, so by the time I got there my RA had started to rear its head. My foot was aching and my hands had gotten a bit puffy. But my fitbit told me I’d already walked my goal of six thousand steps so I was feeling mentally fantastic.
After purchasing a milk frother that I’d had my eye on, I met up with my friends and we watched the new Leo DiCaprio movie, The Revenant. Man, talk about violence. I can’t believe how many parents took their small children in with them. Can you say “nightmares for life”?
My movie got out long after the sun had set, and I didn’t make it home til close to 8pm. On the bus ride home I convinced myself to get off the bus three stops before mine and pick up some chili since the night indeed felt chilly. By the time I sat down on my couch to enjoy my dinner both feet were swollen and discolored in an unappetizing shade of purple. Lucky for me I had picked up a brand new heated foot spa at the thrift store last week for the incredible price of $5.99, so a healing foot bubble bath was in my future.
Because I’d had such a hard day on my feet the day before, but had felt fine the following day, I had hoped that yesterday’s busy day would be followed with another pain free morning today. Alas, RA just doesn’t work that way….
So it seems what I really need in my life is a Magic 8 Ball, the Rheumatoid Arthritis version. I can shake it the night before to see what I’ll be dealing with the following morning. If I had one last night maybe I would have foreseen 3am’s brutal attack on my hands and wrists. Or maybe even the night sweats that visited around 5am, leaving me stranded by pain in bed amongst dripping wet sheets.
RA doesn’t have a warning system. We don’t know when the pain is coming. We don’t even know why. There’s no alarm that goes off, telling us to brace ourselves for an attack on our already tight muscles, our continually inflamed joints, the aches that never leave us. One day we are good, and one day we are not. Monday was a rough day, full of pain and suffering. Tuesday was filled with sunshine, long walks, and smiles. Here is Wednesday and I’m using dictation because my fingers can’t hold my stylus to write. We just don’t know what we are in for.
I really need to get a Magic 8 ball. Maybe it can prepare me for what comes tomorrow..
After careful consideration, involving a ton of research, I decided to do a nutritional lifestyle change. No one more than me is annoyed at the constant media push towards fad dieting. I get frustrated by family and friends on a daily basis when I hear about the great new diet that will cure me. It’s been a long, annoying process of sifting through rumors and facts surrounding nutrition and dieting. But no matter what is popular to do these days, every medical journal is stating that meat causes inflammation.
That’s a hard one for me to swallow. I love red meat. Steak is where it’s at. If I could eat it for breakfast, lunch, and dinner without any negative body impact, trust me I would. Steak, lamb, bacon, you name it, I’ll nom it. I love cooking it, and I love eating it. But facts are facts. Meat causes inflammation. I have a chronic pain disease dominated by inflammation around my joints. I have to think healthier. And if that means giving up meat for the chance to be in less pain… Well then of course I will try it.
So I researched the diets out there, because there are so so many. I wanted to choose what would be right for me. I gave up chicken a few months ago after all the meds changed my tastebuds. Spicy food became spicier, eggs started to taste moldy, and chicken began to taste metallic. At the same time I started to eat a lot more white fish. I’ve never been a big seafood person. I don’t like the fishy taste of most fish. But I found that fish that swim towards the surface are the ones that taste “fishy” while the bottom dwellers taste pretty yum. So I’m on a huge halibut & Ono kick, with some Atlantic Snapper thrown in for good measure.
With all that being said, I decided to be Pescetarian, which means I can basically still eat dairy, fish, and eggs. Excluding red meat, white meat, and poultry.
And to be honest, I was close to being that already, having given up the metallic tasting chicken, and hardly eating meat these last few months. I decided to make it a bit easier I would take on this task with my best friend who also wanted to get healthy for his own reasons. Just like quitting an addiction, we figured we could support each other in staying away from our common love: beef!
Things were going so well.. For four days anyways. And then Murphy’s Law happened… Turns out I have a special type of Anemia that only people with chronic medical conditions get. And here’s the kicker: I can’t take Iron supplements to make it better because they have a negative reaction with an important medication I’m already on. So, literally the only way I can help my body to be healthy is to EAT RED MEAT.
Are you kidding me? It’s always one step forward, and two steps back with this disease. I’m trying so hard to be well and healthy and I feel like my body is always trying to push me down.
I try to quit Prednisone and my body will shut down so the only way it will survive is to get more of the drug. I try to be healthy to lose the weight that prednisone causes, and I develop a disorder that forces me to eat meat that causes more pain. Can I never win?!
How about one step forward, and then another, and another, and then another til I win the race?
Amongst the myriad of painful issues I have alongside my Rheumatoid Disease, I’ve been dealing with a new beast, Osteoporosis. Annoyingly brought on by overuse of prescription steroids and chemotherapy, Osteoporosis is an evil bone depleting demon. According to my latest x-rays my bones look like lattice on the inside, more closely related to Swiss cheese than the solidity they should be.
A few weeks ago I slipped on the stairs, thinking that I’d sprained my ankle. As time went by and the swelling didn’t go down, Mom and I decided that an X-Ray might be a good idea. Last Friday our suspicions were confirmed with a stress fracture in my right ankle. Since a heavy cast would prove more painful than helpful, I was told to wrap it up, put ice on it periodically, and don’t do any jumping jacks. It was a bummer, especially since I already have stress fractures in my left foot.
This past weekend was exceptional. I was more active than I’ve been in a long time. Went to a movie night at a friend’s house, a 7 Deadly Sins themed costume party, and a relaxing afternoon chatting with a new friend. Unfortunately, on Sunday morning I woke up with a strange sharp pain on my right side. More than a pinched nerve, this pain felt like I’d broken a rib in my sleep.
As the day went on the pain increased, getting worse and worse, especially when I would bend to pick something up, or stand and sit. By Monday morning the pain was excruciating, so bad that I cancelled two medical procedures set for this week including another endoscopy and a mammogram to check my Lymphoma. I called my PCP and asked if I could come in for a chest X-Ray. Of course I was hoping for the best, a pinched nerve or maybe just a bruised bone.
By the end of the day the results were in and my suspicions were so much worse than anticipated. Not one fracture, but several. Several! And how? It’s not like I’d been hit by a bus, or trampled by the running of the bulls! But that’s the evil beast of Osteoporosis. Once your bones turn into Swiss, fractures start up. My doctors warned me I’d have to be very careful from now on, and to start osteoporosis medications as soon as possible.
But that’s another yuck factor. I spent all of last night reading up on Forteo, the drug my Rheumatologist recommended I start for Osteoporosis. It’s a daily injection with some of the most awful side effects I’ve ever heard. There is no chance in hell that I’m going to inject myself daily with a drug that not only makes my arthritis pain worse, but also increases my exhaustion and fatigue, causes severe nausea and vomiting, and turns me into a mindless drone. That’s right, one of the main side effects is loss of interest/pleasure, discouragement, and increased depression and suicidal thoughts. Are you f**king kidding me?! No. No. No. No. No. No. No. Did I mention no? And that’s just the worst ones, the side effect list is a lengthy one. It also seems that I’d be so dizzy and disoriented that I may have to stay in bed mostly.
That’s not a life. That’s not even half a life. I’d rather be in pain and rival Mr. Glass than give up who I am. I want to live through this, not just survive. Emphasis on the word “live”.
So if osteoporosis wants a fight, I guess I’m forced to go into battle. I just wish I didn’t have to be in excruciating pain during it.
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