Google Search Epidemic

My scalp really hurts on the crown of my head. Google search: ra and scalp pain. Find: tons of threads from folks with the same question and discussions.

My skin itches like crazy. Google search: ra and itchy skin. Find: tons of threads from folks with the same question and discussions. Realize how often Lupus and RA are confused.

Gosh my ears hurt! Google search: ra and ear pain. Find: tons of threads from folks with the same question and discussions. Baffled by talk of “ear joints.”

In April, I distinctively remember asking my husband if I should mention my terrible foot pain, as he drove me to the doctors when my thumbs locked up. Nah, how could that be related! Besides, my feet don’t always hurt and in fact didn’t at the time! I’m sure it’s those damn heels.

Because it would have been relevant to bring up my feet, it has made me over think everything and blame RA for everything. The funny thing is, I am obviously not alone as every time I google RA and anything I find a thread about it! It’s kind of absurd and comical.

It has taught me five things. First, RA is to blame for a lot but, not everything. Second, we don’t know enough about this crazy disease! Three, I can’t be concerned with ALWAYS knowing the cause of things. Four, sometimes it’s important to just take a note of it and let it go! Five, if it is RA what does it change?

Listen More, Compare and Apologize Less

I have been told, “At least you don’t have cancer.” While I am thankful that I do not have cancer and understand the sentiment behind the statement, I disagree with comparison. I disagree with all disease comparisons. My mom is a cancer survivor and my great-aunt died of cancer. It’s a horrific and terrifying disease but, not comparable to RA at all. I don’t believe there is a rating system for disease and hate the game would you rather die from this or that. I couldn’t imagine ever saying to a cancer patient, “at least you don’t have RA (or anything else for that matter).”

Initially, while in agonizing pain, I had a flood of frustrated thoughts: Good thing I don’t have cancer! What a relief! I feel so much better! I have no end date to the pain destruction of my body. I am not terminal and there will be no remission. I am told I will be on chemo for the rest of my life. Though I am slowing the progression with poison, my body will continue to attack itself and will get progressively worse as I get older. While death is possible, from a variety related causes, it seems more likely that I will just become crippled to some degree instead. Well, that all just sounded nasty and unhealthy! Comparisons can lead to ugly things!

This brings me to the point of this post, which is the strange responses we all have to illness. I don’t advertise that I have a disease but, certainly tell people if they ask why I am wearing braces or limping. I like to think of it as education and that maybe it will help people not judge those who are not visibly diseased. Despite my want to educate, it always inevitably becomes awkward. It seems that we live in a culture of people who have no idea what to say. I know I am guilty as well. Where there is the lack of words comes a flood of comparisons or apologies. The common responses are: Oh, my (insert grandma, dad, mom) has arthritis, have you tried (insert random joint infomercial), I’m sorry, I hope you get better, or a combo of the stated. On the other hand, for example my husband cuts his finger, he feels guilty complaining about his pain. That’s just silly! We all have pain, it’s not comparable, and that should be okay. I think the purpose is communicating. It is such a healing tool. When I stub my toe, I want to bitch and moan! I certainly don’t want to say- man, my RA hurts so much more than stubbing my toe!

On a related subject, with some friends, I notice complete avoidance of the subject. I’m not sure if it’s denial, fear, or avoidance because of not having the right words to say. The thing is, I can fear my illness but I can no longer deny it and be silent about it. I have hurt for years, not really talked about it, and it now feels therapeutic to talk about it. I absolutely do not want pity- that would make me pitiful and I am not. I am strong but, don’t want to pretend that this is not part of my life. I wish that it was not so awkward and uncomfortable to hear. I know it all stems from a feeling of helplessness or lack of words. Sometimes, shhhhhh and just listen.

Through this, I hope to take my own advice and be a better listener for my husband, family, and friends. I will be more conscious of comparisons and apologies and make every attempt to not do so. I think more than anything we all just want to be heard and sometimes response as simple as a nod of the head or simple verbal acknowledgement is the perfect sound. On a good day, a gentle hug does the trick too.

Picking Up the Pieces

It’s been awhile! Shortly after learning I would be starting a new treatment plan, I headed to my retreat, my bed, for the week. The stress of this disease has often made the symptoms more ugly. I often hear my doctor’s voice, “it is important that you not stress.” But, sometimes this disease is a lot to handle! I felt malaise and my joints were hot and angry. Thankfully, I received several awesome responses from folks expressing that a change in their treatment plan was just what they needed and suffer less as a result. Rad! I hope that will be me too! I have big plans for a life with a more tamed/cooperative immune system! My joints are eager too!

During my week down (and time away from the blog), I spent a lot of time thinking. I was diagnosed with RA and a month later I was fired from my job. Worse, my husband and I were fired at the same time, on the same day, and by the same employer. I have read about awful people, heard stories, but until this instance I could not have said that I have ever known cruel people. After this experience I struggled to understand and even read The No Asshole Rule, by Robert Sutton. Though it was a great read, I still I struggled to comprehend- How does one justify the termination of a husband and wife in this economy, who have never been reprimanded or written up, who have never done anything but work hard, pour their all into a job, and obviously love what they do? Not to mention, I was sick and would suddenly have no insurance! Obviously, it was a whirlwind of fears, tears, and a hell of a lot of additional terrible joint pain. But, don’t worry it gets really good!

I can say without any hesitation that our lives are infinitely better. My husband and I have always felt that we have a wonderful life. Therefore, it should not be surprising that getting away from abusive employers only has made things more awesome. As I try new doses/treatments, my husband goes to a positive, truly rewarding, and kind work atmosphere- the complete opposite of where we were. And we enjoy our time together more than ever.

If you had asked me a few months ago, I would have thought that being sick and at home would drive me to an insane asylum. I used to be such a super busy and social body. I thought that defined me. However, I have changed. I’ve done a new evaluation for my future based on the new me. Everyday, I am developing a plan for my new future and oh it is good! I have always wanted my own business and now I am piecing things together so that I can actually make it happen. It has brought me some of the greatest joy I have ever felt. Also, though I have stressful and painful days (sometimes weeks) I have never felt the sense of peace that I do today. I know I cannot control who people are and the decisions they make. However, I can deliberately choose my own path while staying focused on the moment, my surroundings, and making changes avoid the assholes who will try to bring me down. I know my life is rad and RA, assholes, or anything else cannot take that away.

Doctor to the Rescue!

Though I’m sure I’m being dramatic, gobs of my hair seemed to be coming out all day yesterday. It was even in my coffee. Eww! Hair in food really disgusts me. But, I decided coffee was more important than a little hair, plucked it out, and drank it.

A short time later I forced myself up, bathed, applied minimal make-up, brushed my hair, tossed on loose fitting clothes, and made my way to get my 150 foods blood panel on its way. It was 10:30am when I last looked at the clock. When I got to the lab it was 10:58. How did that happen? The lab is only 10 minutes away. I moved slower than I thought. There was some confusion for my blood panel, as I brought in a kit, with pretty glass vials and a UPS bag. Apparently this lab office doesn’t see this often.

40 minutes, several strands of hair, and 4 filled vials later the issue was resolved and I made my way out. Whew! My husband met up with me and we had lunch at Chipotle. We got the salty-lime chips with a veggie burrito bowl (we always share). I felt as though I couldn’t taste anything and soon felt disgusted and quit. In the back of my mind, I couldn’t wait to get home to blast some tunes and finish a painting I started two weeks ago. Painting and music are great healing tools.

I sat down at our round breakfast table with my painting and supplies, one of my fluffy kitties at my feet meowed and marked my legs, and suddenly felt extremely fatigued. I have trouble sleeping on a regular basis and am never able to nap but, I suddenly felt the need to sleep. I had my favorite brushes neatly arranged, mixed the colors I needed, and had my favorite new band (Efterklang) playing on Spotify. I’ll feel better soon I’m sure. With each brush stroke I felt more tired. Maybe it’s the blood work? Though, I felt okay immediately after. What’s going on?

I finally gave in, leaving all my supplies out, and headed to the couch. I was light-headed and sick feeling. I crashed for about an hour and woke up feeling flu-like. Over the years, I have felt this way off and on and have always attributed it to a virus. Day two, and I’m finally realizing I may be experiencing the strange word “malaise.” I also have heightened joint pain.

Though, I’m not feeling well, it is sure nice to have a possible explanation for my unwell feeling. I have gone to the doctors so many times when I have felt like this, just for them to simply say it’s probably just a virus. I think it might be time to accept this feeling and move on with a different doctor. The loss of Rose on Doctor Who was super sad and I have put off the next episode on Netflix. Doctor Who usually makes me happy but, gosh the last episode was sad! How can a show I made fun of for so many years be so awesome and cause me to be involved enough to shed tears?

Geronimo!

The Old or Something New?

“You’re at the highest dose,” my rheumatologist told my husband and me yesterday afternoon and continued, “but, I’m on the fence as to how to move forward. I’m not sure if we should wait and see the full effects of the methotrexate or to try something else.” I’ve been on 20mg of methotrexate for 6 weeks and have not seen the change I had hoped for. In fact, the major change has been that I am sick 2.5 days of 7 from the medication and feel it wear off, as my hands and feet (etc.) feel tight, and puffy on Friday afternoons. So that gives me about three days a week where things are potentially okay (depending on the day/week). My doctor repeated, “The goal is no stiffness and pain.”

As an ending note, my doctor decided biologics with a lower dose of methotrexate may be the next step. I have to have a chest x-ray and he will be contacting my insurance to see what they will cover. I can’t help but feel terrified all over again. There is something oddly comfortable about consistency. I know what to expect and, although it is not great or even good, I find comfort in the known.

The idea of giving myself shots, further poisoning my body, and adding new risks make me feel uneasy, actually terrified for now. But, on the other hand perhaps my body will respond better and I will get days back? The statistics aren’t awesome and I feel myself wallowing in sorrow at the loss of my health and poisoning of my body, again. It comes and goes. Thankfully, pity party ice cream was readily available. Chocolate covered peanut butter filled pretzels in vanilla ice cream swirled with peanut butter. Yummmmmmy. I owe you that recipe.

I find myself daydreaming about medical remission. It happens, right? Is it good to be hopeful? One day at a time. That’s all we can do. I do know I am not in absolute agony anymore and am thankful to come this far.

Making Sense with a New Approach

A book, Vaccine Epidemic, sat proudly on the reception counter. The seats in the waiting area were antique, slightly stained, and felt as if we could fall though the bottom at any moment. I filled out an enormous packet, with front and back pages, providing the entire history of my health. We sat for a hour and a half feeling unacknowledged and agitated. It also allowed time for suspicion and fleeting feelings to arise. Is this place even credible or a false beacon of hope? Maybe we should just leave.

My husband, mom, and stepdad were all there feeling a wave of emotions along with me. We were finally moved into a room where we sat longer. The room was large, had a massage table, sink, and small desk with children’s art under the glass. There were also numerous photos of two children, both gingers. One of the photos was a creepy hologram. The faucet in the room dripped heavily. My stepdad and husband sought to stop it without success. It quickly became a metronome for a impromptu rap for my husband and stepdad. Meanwhile, my mom thumbed through a basket full of magazines eventually picking up a Best Home magazine and quickly browsed through the gardening section. I sat anxiously, but amused by my family.

Time went on. My mom thumbed through the reading materials again, finding several children’s books. She settled on the giant eyed Powerpuff Girls. She read the story, A Little Monstrous Problem, aloud to us as if we were children in a kindergarten class. I was entertained and more importantly distracted. My husband and stepdad were still fidgety, not paying attention at first but quickly became involved. In the story, the Powerpuff Girls ran into a monster which, looked more like a dinosaur to us. They were rightfully scared but it turned out the monster was too, even crying a river. The Powerpuff Girls struggled with indecision. Was the monster and enemy to be destroyed or scared and harmless? The result is they spoke to him, found out he was sad and lost, and returned him to his family. It seems the Powerpuff Girls need to have a conversation with my immune system. My joints are not the enemy! They are also sad and harmless!

My step-dad began to read Thomas the Train when the doctor made his grand entrance. Perhaps arriving late is his way of getting our attention. He had it but, we were cranky and doubtful. He began wanting my life’s story, which I struggled to tell. My mom filled in the blanks. I provided head to toe health concerns and much of the same info that was in the packet. I was annoyed. It’s like calling your credit card company, typing in all of the damn numbers and then getting a rep who asks for it again. Ugh! At one point he said he had to figure out a diagnosis and I felt my body shutting down. Not again. It took months, actually even years, to learn what is wrong and now it’s in question again? I’m done. After a long dumbed down explanation of RA, I was feeling annoyed, hopeless, and disappointed.

The doctor expressed his feeling that I don’t cope well with stress. I strongly objected. I feel I have recently made significant progress in that area. Getting out of my abusive job has made an enormous difference! He then talked about stress with the analogy of seeing a lion and the fight or flight response. I quickly understood the point, realizing I have a long way to go in learning how to be calmer in morally challenging situations. He told me he cannot help me if I am so sensitive to my environment (feeling the flight/flight response). My health depends on my calm response to stressful situations. A doctor who is concerned with more than just my disease? About my whole self and how it effects other things? Well, that just makes sense. None of my other doctors are concerned with my mental well being- that just doesn’t fit into the 10 minute appointment timeframe nor has it seemed relevant. I tried to ask for help related to insomnia and anxiety a couple times and was told I will be better at handling it over time. Thanks for the vote of confidence! However, how do they know? Can you get to know someone in 10 minute increments a few times a year?

He then asked me what I thought of my immune system. “Is it weak or strong?” he asked. I confidently told him, it is weak. I am sick whenever a cold /flu comes around and developed RA. People in my life have referred to me as being a sick person- which I cannot stand. He then explained how the immune system worked coming to the conclusion that my immune system is strong and is doing its job. He said he worries most for those who never get sick. Well that just makes sense! Now, if only my immune system could stop being awesome at attacking me.

After the million question test my doctor believes I do have RA however, has to prove his hypothesis. My next steps are to bring in all my prior blood work, have a blood panel of 150 foods to learn which foods cause inflammation, and a full body physical (going as far as to even know how I move/walk/pressure points etc.).

I went to this homeopathic doctor with high recommendations as a skeptic and left feeling like this is the best doctors appointment I have ever had. He listened, cared, and spent over an hour and a half with us. He wasn’t the clichĂ© homeopathic doctor telling me to stop taking all medications. He actually told me to continue on methotrexate according to my rheumatologist until my RA is (hopefully) managed through homeopathic methods. His goal is to reset my immune system and said it will take a year to see the results from this route (which is to be determined). It is important to mention, the folks who recommended this to me manage their RA through traditional and homeopathic methods.

My family and I have decided that this all may or may not make a difference but, it’s better to know than to wonder. Like most, I would prefer to control my disease with food and natural remedies than with poison. I feel his methods make a lot of sense- you are what you eat, it is imperative to reduce stress (reactions specifically), and treating the whole person rather than just a disease. I have always thought about food as being very important. Each bite I take is an has always been an important and conscious decision and will be even more so soon.

I’m going to take things one day at a time full of gratitude for life and my fabulous family. I’ll keep you posted as I go through this new process!

Making Uncomfortable Decisions

A woman killed by her boyfriend/fiancé/husband. A child struck by a car in a hit and run incident. A woman is accused of killing her husband with a coffee cup. A terrible car accident results in multiple deaths. Cancer has taken more lives. A child dies in football practice. 50 animals, many deceased or starving, were recovered in a hoarder case. Local/national news stories are completely unbearable. It overwhelms me in a sense of hopelessness and therefore I try to avoid it.

Like most, my family has endured multiple terrible instances that would all fit seamlessly in the local news. But until this week I have never thought about the importance of having a living will. It’s an uncomfortable thing to think about.

When do I want medical care providers to stop treatment? How comfortable do I want to be? Who will make decisions when I cannot? Do I want to be buried or cremated? If I want to be buried, where? Will there be a funeral? If so, where? What will be said? Who will have the power of attorney? What would I want loved ones to know? It makes me feel uneasy to even type it out. However, I have recently experienced what can occur without having written answers when tragedy unexpectedly occurs.

Lifestyle choices and belief systems are important to each of us. Sometimes they align with our family while others conflict. Without a will an already horrific situation can turn into something even worse. When loved ones are suddenly put in situations to care for someone in need, it requires involvement of personal lifestyle choices and belief systems. Family can only do what they know to be best to protect and care for those they love.

It’s devastating to watch a large family experience a terrible loss. It’s worse that there is heavy disagreement and conflict over the final proceedings. It has been said that this loss and division of beliefs could tear a family apart.

If final arrangements are previously decided by each of us, it (hopefully) alleviates additional pain. Division of lifestyle choices and beliefs often involves hatred and intolerance which then shuts down all possibility of finding a middle ground or working to agree to disagree. Compromise is absolutely out of the question. This is exasperated when decisions have to be made quickly and when emotions are at an all time high. The consequence is additional pain and suffering during an already difficult time. At a time of tragedy, family should be focused on grieving and supporting one another instead of being at war. This is not a time for victory.

It’s difficult to know, even for those who I know best, how I would handle and make decisions during tragic circumstances. It’s even difficult for me to provide specific details of what I would want. Although uncomfortable to think and talk about, if we all make decisions in case of a tragic event, we have done our best to care for our loved ones, and leave behind only memories instead of conflict.

Whole Love

The public restroom was enormous, modern, and clean. My body was heavy as I juggled a bright red, square, microfiber pillow (for my rear/hips) and light blue denim jacket with jingly buttons. To avoid germs in the shiny stall I aimed to kick the toilet to flush. I should really be restricted to a small rubber room on Sundays and get occasional reminders of my lack of coordination for the day. Midway to the handle my middle toe slammed into the corner of the metal feminine napkin disposal box. I felt a sudden shock of pain and felt as if I had broken my toe. Seconds later, as I made my way to wash my hands, I experienced a wave of unconcern as if it never happened. I had to focus hard on my next task. After struggling with the automatic foam soap, water, and paper towel dispensers I peered down to see blood all over my toe and teal/brown sandal. What the? You have got to be kidding me.

After a small battle with the automatic paper towel dispenser again, I hobbled out of the fancy bathroom bewildered with a handful of rough wet and dry paper towels. Thankfully, a shiny, beautiful metal bench awaited me just outside the door. “What happened? Are you okay?” my husband startlingly hollered to me. Ugh! Blood continued to gush as if my toe had been amputated. We could subtlety hear Johanna Newsom strumming her harp and singing and conveniently there was also a flat screen television in plain sight for us to watch her. Finally, the blood was under control and I bandaged my tiny wound in the newspaper-like paper towel. Fancy!

My husband and I laughed as we made our way to our garden box seats to see the remaining portion of Johanna’s set, eat, drink (no alcohol, of course), and wait for the band we came to see- Wilco! This was a big adventure for a Sunday when my body is being hammered by methotrexate. I was determined to live life without limitations.

Wilco stepped out on the stage and a strong sense of peace and exhilaration hit me as the warm breeze swirled through the Bowl. People were eating snacks, drinking wine, and truly enjoying their lives all around us. I could almost taste the Merlots, Chiantis, Cabs, and Syrahs with the drafts. People danced, sang every lyric, and cheered like I haven’t seen in awhile. It’s my peeve that people get wasted on any given drug and talk through shows. I could think of better places to get wasted and socialize. It’s also frustrating when people sit idle, almost dead, as the artist(s) pours their heart into their performance. I vividly recall one show where my husband was scolded by an audience member for singing along. How dare he enjoy himself!

It was a whirlwind of a night with conflicting feelings- strong emotions, exhaustion, peace, and joy. It was hard to hold my head up. It was hard to experience the show the way everyone around me was. However, live music is very therapeutic and heals like no other.

It was after 10pm and we slowly made our way back to our car. The Bowl actually had escalators to the parking areas, which was completely rad! I got in, reclined my chair, let my head softly hit my flat and cold pillow, and pulled the purple blanket that was once my great-grandmother’s over me. I was ready for our trek home. I did it, I made it to the concert on a Sunday!