Waterbed for My Head

My neck has been awful for about a week solid and one of the wonderful Facebook groups RA Chicks posted a question by a fellow RAer regarding pillow recommendations. Seriously, did someone read my mind? THANK YOU! I have been looking for months (okay probably years)! I even recently bought and tried out a pillow that seemed to be flat enough but, it wasn’t and instead felt like a torture device. My husband said he would wear it out and flatten it and let me try again.

I am sleeping on a seriously disgusting, ancient, and suuuuuuuper flat pillow because it’s that, a blanket rolled to the right height, or nothing at all. It’s bad. After looking at several of the suggestions, I decided this seems the best for me. I mean a waterbed for my head- rad! The runner up was the buckwheat husk pillow. Heck, I might get it too! Then perhaps I could… what do you call it… oh yeah sleep! Also, when my neck hurts it also makes me slightly nauseous. It’d sure be nice to wake up after a restful sleep without nausea! Fingers (figuratively) crossed!

I’m expecting my waterbed for my head tomorrow! I’m excited! I’ll keep you posted!

40 Yogurts a Day

I laid on the exam table with thin paper coverings and soft Gold Toe black socks stunned and horrified. Getting a physical is always mortifying/awful and this time it was particularly worse. “It seems you may have a very mild yeast infection” said the PA. A who, what, where, why, when, and how?

I had a friend who used to divulge her chronic yeast problems over lunch at our work. Yum? “The itching is so horrible today,” she would tell me. Thank you? Though I was unable to relate entirely because I had never had one, I would listen, feel sympathetic, and wince.

I stumbled around as I got dressed thinking… yeast infection? Ewww. No, but seriously ewww! How could I not know? Per my old friend’s persistent sharing of information it seems impossible to miss. There was a knock at the door and the PA came back in.

“I have a yeast infection?” I asked like a small child.
“Yes, it’s very mild,”she explained with ease and continued “you just have to to take a couple pills and that’s it. It’s no biggie! They’re very common.”
“But, how did I not know? I’m not even entirely sure what it is. I have never had one,” I whined.
“It’s very common that during a physical it is discovered because it can be asymptomatic for the patient,” she reassured.

After getting all my new prescriptions, I left the room like a zombie. How could I have made it 31 years and then all of a sudden bam- yeast! Like a good anxiety filled patient I could not let it go. I got home and immediately googled it and found a statement relating to those who had immune suppression because of automimmune or cancer treatments had a higher risk of yeast infections. After deeper investigation I found that TNF inhibitors (Humira) make you more prone to fungal infections, of which a yeast infection is one. The fun never ends with RA, right?

It may seem silly, but I was proud of not being able to relate to the Monistat commercials. Now, like the Humira ads, they seem to haunt me. My husband joked the other day that all I need now is a depression medication then I would be on all heavily advertised type medications. I’m surprised given how women are treated by many medical professionals that I don’t have anything to treat depression. Unless Xanax counts? I was prescribed Xanax to help me sleep when I was diagnosed and fired. I prefer to just lose sleep as I think losing sleep is a normal reaction to those things.

I’m going to head off to ingest my newly self allotted 40 soy yogurts a day. Let’s go probiotics! Only kidding of course, Ha!

Easy on the Yoga and Comparisons, Please.

I decided that I am lazy. Laundry was piled up, closet a mess, dust everywhere, dogs unbrushed and stinky, clumps of fur on the carpet, dishes stacked, yard- we won’t even go there, and what am I doing? Hibernating under the electric blanket. Television seemed to sense my sedentary ways pointing out that it lowers the number of years you have to live and increases probability of disease. Meanwhile, other people with RA compete in triathlons, marathons, and other physically strenuous activities. My cousin said she has a friend who has RA that is “the most fit person” she had ever met and even runs on the beach “every single day.” When seeking medical advice from Mayo Clinic and WebMD, I learn that exercise is not only beneficial but can also improve RA! I better get my ass on the move!

Though my knees and ankles ached and I did not feel well, I decided the blobby and inadequate feeling was winning. I found a light yoga video on YouTube and to got moving. I gently moved myself onto the floor and prepared for pose one. I completed the poses and dizzily made my way to the shower. My right knee hurt more than before and when I got out of the shower I noticed a bruise appeared. Oh, come on! Really? Really.

When I was working a million hours the house and yard work piled high. I never participated in a triathlon, marathon, or any related physical competition nor have I ever had the desire to do so. My cousin’s friend may have mild RA where the medications actually make her better- good for her! Let her run and be a super fit warrior! Meanwhile Mayo Clinic and WebMD can hang out in the dark thinking RA is another form of arthritis where exercise is the answer.

Comparisons are awful and for the most part I do not participate in them. However, I pushed when I shouldn’t have because I fell into the comparison trap and was scared to be viewed as lazy or unmotivated. More so I was scared of self judgement. If this person can do this with their ailment, if that person can do that with RA, if medical advice says this, and okay this is stupid. I’m not lazy. I have a serious disease that makes days, weeks, and months hard. Some days I need to celebrate moving from the bed to the couch. While other days I need to celebrate being able to dress, wash, clean the dishes, vacuum, do laundry, pull weeds, walk on the beach, and/or grocery shop. I know that when it is possible I will do what I need to do, exercise included. Before RA hit me like a ton of bricks, though I never did triathlons, I was super active. RA didn’t take away my joy of being busy and active, it made it impossible.

I had a few easier days since and I celebrated my ability walk on the beach, wash dishes, dust, clean the bathroom, grocery shop, cook, clean the closet, vacuum, and sweep the floor. Today, I am celebrating getting from the bed, to the couch, to the shower, and back to the couch under my warm electric blanket.

Opening an Attachment

This is the most relaxed I have ever been, perhaps even my whole life. Then Tuesday came and went taking my relaxed state with it. I received an email with a simple phrase, “Please open the attachment with your student teaching placement.”

I would imagine that for someone who has just completed their coursework for their teaching credential, this would be an exciting first step in the classroom. However, after 4 years of teaching on my own, this feels strange and frightening. Strange because after my fourth year I felt like I had reached a good level of comfort and had lots of exciting ideas for the following year. Frightening because I have post traumatic stress, from the abuse my husband and I endured at our previous job. I love teaching with my heart and soul but after the way we were treated, it hurt my vision of the profession. In our situation, the administration was completely incompetent, uneducated, catty, and unprofessional. Ironically, we were made to feel as though we were those things. The story continues at that school where at least nine more teachers have been terminated since the beginning of this school year. I am so thankful we were fired and no longer have to work in an environment based on bullying, abuse, and fear.

I’m also concerned about my physical abilities. Though, I am better than I was eight months ago I still suffer from fatigue, stiffness, pain, and emotional distress. While I am different now, I worry that my brain still has not fully acknowledged this fact and therefore being in a working environment will cause me to realize my limitations and disability.

On the flip side, I’m looking forward to moving beyond a difficult period of my life. It will be nice to look back with focus on a different and (hopefully) positive teaching experience. It will also help me to better decide new future goals with RA in mind. For now my focus will be to learn to find peace with the coming days and weeks.

More than Celebrity T&A

I think I have had my fair share of Jake Gyllenhaal’s rear and Anne Hathaway’s boobs. It was Sunday, typically my worst day of the week, and I laid under my soft light blue fleece electric blanket on the couch enduring the negative effects of methotrexate (which was taken the night before). The movie channels were all free which was a pleasant surprise. My husband was in the kitchen making us a fabulous tofu scramble breakfast when I discovered Love and Other Drugs, a movie I wanted to see years ago, was only 20 minutes in. Rad! I threw it on and became quickly annoyed with the cliché- he’s a successful drug rep. and she’s a screwed up artist- relationship. Why did I want to see this- I cannot even remember. After the millionth sex scene, it was just funny. “Anne Hathaway’s boobs again, and Jake’s butt, more boobs and butt,” I shouted to my husband to keep him informed of the important storyline developments as he made breakfast.

My husband plopped down next to me with hot bowls of scramble in hand. “We should find something else to watch,” he said in a serious tone. But, I was invested! I have a terrible habit of finishing movies because I have a genuine feeling that I might miss out on a moment which turns the whole movie around. I’ll call it the optimist in me. Most of the time it results in further disappointment but, I’m loyal. Halfway through the movie, there had been multiple references that Anne’s character not only being uncommitted but sick as well. It turns out they weren’t going for the mentally imbalanced artist cliché character, but rather stage one Parkinson’s disease. The foreshadowing took an unexpected turn.

My dad took my husband and me to lunch then visited for a couple hours on Monday. It was a chilly 36 degrees outside that day and my dad was in shorts. He also has rheumatoid arthritis. He has run the gamut of medications like methotrexate, enbrel, humira, remicade, and others that were unfamiliar to me. He’s now only on high doses of prednisone and pain medications as needed. His words were “I would rather live a short happy life than a long and painful one.” I can definitely understand his sentiment.

I have never been close to my dad and don’t see or talk much with him. He’s a very distant person seemingly to the world, which has provided me some solace- at least it’s not just me. Since I informed him of my diagnosis however, he has made a big effort to call more. I can hear the guilt in his voice when I tell him about my symptoms or explain my good or bad day. I try to reassure him that he did not intentionally pass this on.

This is the first time I have seen him since I was diagnosed and it was the least awkward visit we have ever had. I feel that I understand him for the first time in my life and, sad as it is, we also finally can relate to one another. In fact, he is the only live person who understands exactly what I am going through. It’s very comforting to have that- 5 minutes, 15 minutes, or a couple hours with someone who gets it. For some reason, it makes me feel less crazy. Perhaps, I still am suffering from denial but, sometimes I feel like it’s ridiculous and impossible that my body is attacking the lining of my joints. It’s just too absurd- that’s why most people cannot understand!

I looked at my dad differently that day. He showed me his knees, elbows, but said his shoulders are the worst. Though I was particularly saddened to hear that his legs are now unable to lay flat; his knees are that bad. This is all still so new to me and I felt astonished to see the reality of this disease on my own father. Though he didn’t complain and remains positive, I saw a glimpse that he is disheartened and ashamed of his nodules and damage. It’s hard to comprehend and even so many years in (he showed symptoms at 26) it seemed it was even difficult for him too. He told me that I would eventually get used to the pain. He said he’ll be limping and people will ask him what’s wrong and he doesn’t realize the pain until others mention it.

I look at my own body and think naively, this cannot happen to me. My hands, elbows, shoulders, knees, ankles, feet, and hips show no obvious signs of disease. Even on my worst days, I don’t have terribly obvious swelling. My dad described he had so much swelling that doctors had to drain fluid to relieve the pain. I try to imagine all that he has been through but, am really too baffled to comprehend it. How can your body do this to itself? How does my dad still smile?

He has been through numerous relationships/marriages, has five children of his own, and now resides mostly 7,000+ air miles away with a woman and her eight-year-old daughter. He mentioned that if his RA worsened that he would have to come back to the US leaving his new family behind. He said he has gone over this with his girlfriend. How could he do that?

I feel guilty occasionally for being sick and getting in the way of my husband’s life and joy. He’s so energetic, positive, and has so much to offer the world. Especially on my bad days, I feel like my disease- I interfere with that. Luckily, my husband sees caring for me as a privilege and does so with incredible kindness and entirely without complaint. Also, I am able to (mostly) receive his kindness without guilt and instead with great gratitude.

In Love and Other Drugs, Anne’s character runs from commitment as she sees herself as burdening someone with her progressive disease. If I had seen this movie prior to my diagnosis, I would have thought it was ridiculous but now I know; diseases are burdensome for all involved. Some people can handle illness while others cannot (the sick included). I can’t help but wonder if my father’s distance from me, my half siblings, significant others, and the world and his uncommitted ways stem from RA.

Though the writing wasn’t good and it had plenty to greatly dislike, I’m thankful I was loyal to Love and Other Drugs as it actually raised important questions and had a powerful message, one that is not usually discussed or acknowledged. I have read so many comments on RA related discussion boards about men and women who have unsupportive partners, family, and friends. Some issues arise from lack of discussion of the disease, stubborn independence, guilt, meanness stemming from pain, frustration, unfair workloads, lack of sympathy or compassion, and so on. With so much chronic illness and disease in our world, why are relationships and chronic disease not in public discussions. Why is Manti Te’o’s hoax a more important public discussion when more than 75% of marriages result in divorce when one partner is chronically ill?

It makes me think of John Edwards. Why and how did he leave his wife when she was dying? Why is the focus on his mistress and child rather than on the struggle of relationships when dealing with chronic or terminally ill? There are always dramatic soap-opera type distractions from real issues that we all could learn and grow from. It’s easy to judge a situation and condemn when we are given bits and pieces of information but, what good does that do? Focusing on the negative does nothing. In fact, it causes more damage by perpetuating and empowering fear rather than creating a discussion with the focus on problem solving and thus improving life.

We all empower our world to be what it is through our actions and as consumers. We are what we buy, read, and watch. When a movie with the premise of chronic illness is hidden in previews and gains viewers through celebrity, cliché writing, and lots of unnecessary nudity/sex, it’s a societal problem. When society is affixed on poking fun of a southern 8-year-old beauty pageant child, I scream- we have to be better! It’s time to have meaningful discussions without the soap-opera prequels.

Future Funk

This is Curascript the automated voice told me. It’s week six and time to refill Humira again. I also had to speak with an RN to discuss progress and if there were any issues.

“I am seeing you are taking Humira for the diagnosis of Rheumatoid Arthritis. Is that correct?” the RN asked with a loud matter of fact tone. Eight months into this, it seems I should not be in shock to hear her question and reply yes. Instead, I froze realizing I have Rheumatoid Arthritis and after an awkward pause replied yes. I honestly do not remember what else the RN asked me as I slipped into a daze.

After spending the week laid up on the couch, I’ve been in a “what will my future be?” funk again. Will Humira help? How much longer will it take to know? How will I work again? Can I successfully work from home? What will I do? How will I do it? Should I get a conventional job? How could I do a conventional job in my state? Will I have to drive long distance? Will I be successful? Will I fail? Will I disappoint loved ones? Will I disappoint myself?

I sketched for awhile until my hands screamed no!

The hardest part of having an ill body is having a busy mind that is eager to make a game plan, create, and get going! Meanwhile, my body says… sloooooow down. It always wins.

One day I will find peace for these hard days and ease disappointment for my active brain trapped inside this achy and painful body. The start is to remind myself that this is one day and each day is its own. I suppose it may take more than eight months to fully embrace and realize this concept.

The storm is passing through but, the sun still found a way to shine brightly on this cold day.

Something Old, Something New

2012:

My husband took in my sub plans.
I was very sick.
I worked a million hours anyway.

My feet, wrists, and neck ached.
I told myself I was a hypochondriac because this pain made no sense.
I worked a million hours.

My thumbs locked up.
I couldn’t put on my pants or wash my hair.
My awesome husband washed, dressed, and carried me to work.

My honorary father had a stroke- he is okay.
I was thousands of miles away.
I could hardly move.

My husband and I were fired without cause.
As I was being fired my former boss pointed out cobra benefits with joy.
I had no insurance- cobra paperwork was never filed.

Our world crumbled.
Our students were told that we quit.
Phone calls came pouring.

My rheumatologist said I have aggressive rheumatoid arthritis.
We paid for doctors visits and medication with credit.
I took four pills of methotrexate, then six, and finally eight.

My husband got a great job.
I felt rejuvenated with his positive experience.
Silver linings.

My family is amazing.
I am lucky.
I am full of love.

My doctor added Humira to my treatment.
People say I will get better.
I wait.

2013: I’ve never made resolutions, though this year definitely comes with questions, concerns, and hope that I have never had. However, I also have some answers. I have made a decision about my career and am very excited. My marriage is stronger than ever. My family is my awesome.

I had a couple weeks where my pain was low. Though I told myself not to get used to anything and take things one day at a time, I found myself thinking that maybe I would no longer have to endure ugly RA. Then the pain grew in intensity and has yet to lower again. It’s not horrific pain but the kind of pain that nags body wide making it difficult to easily move and sleep. I find myself wishing it was isolated pain that would just heal- like a broken bone (which I have never had). Could it be stress of the holidays? Weather? Certainly.

I will have my fourth Humira shot on Thursday. I will continue to wait. In the meantime, I have a lot of rad and exciting creative projects that are calling! One day at a time. Happy New Year!