Monday, October 2, 2017

The first article I ever wrote and published was a review of a new show on NBC titled, Will & Grace. I had just began my freshman year in high school. High school was not a place I enjoyed. It was full of people who were less socially awkward, didn’t enjoy reading or listened to Sarah McLachlan like a hymnal from church.

My first writing assignment, for the school newspaper, was to write a review of the of a new show. I don’t fully remember what first drew me to Will & Grace.  I suspect that it had something to do with a looming deadline and it was the only new show airing on a stellar NBC Thursday night line up including, Friends, Seinfeld and Frasier (?). By the way, I gave the show a rave review!

Saturday morning, I watched the reboot of Will & Grace. It was smart, funny and absolutely Will & Grace. All of the same elements were there; Will was looking for love in all the wrong places, Grace was living with Will (after another failed relationship), Karen is still drunk and Jack is “Just Jack”.  The show brought much needed laughter and intended absurdity in an examination of how our lives intersect between politics, living life and finding love.  To be clear, I am smitten and over the moon that this show is back!

As much as I enjoyed Will & Grace, after the show ended, I realized I was feeling something. The feeling was a cross between sadness and a longing for something. I was confused by my feeling when I had enjoyed, laughed and looked forward to watching one of my favorite shows rebooted. I thought I would feel something else? Maybe a happy nostalgia? Maybe a sense of relief? As I watched a lovely couple get married in the building that I work, It became clear to me why I was so sad – nostalgia for all that could have been.

When I first enjoyed Will & Grace, I was in high school, writing a tiny review of a show that no one would read for my school paper and trying desperately to fit in and be in awe and fear of the life experiences I had in front of me. I was completely dependent on my parents, financially, for any mobility (i.e. a car) and for ensuring that I went to school and staying out of trouble. I had freedom but, I was bound to my family for so much of my existence.

The Will & Grace reboot made me realize how full circle I had come. I had been out on my own, I had a full-time job, I went on to university and obtained a Master’s, I lived on my own and was responsible for myself. Then, in the blink of an eye, I was diagnosed with psoriatic arthritis. The diagnosis forced me to make decisions that most people don’t make in the their early 30’s – I was dependent on others. For the first time, I couldn’t work to sustain living on my own, I would not be able to work full-time and I had to ask for assistance. I attended more doctor’s appointments, fulfilled lab work and was sicker than I have ever been. I was scared, confused and sad.

In the three and half years since my diagnosis with PsA, I have learned that I am so much more than my diagnosis. I still live with my parents, I work part-time and I still have a fear of my medical future. However, I have never been more content. I have the knowledge that I can overcome and be anything that I want. My future is not dedicated by PsA, it is shaped but not formed.  In so many ways, PsA saved me from myself. The constant anxiety and self-doubt, that plagued the high school me, is less noisy. I know that I am.

As I finish writing this blog post, I am proud that I was one of the first to recognize the potential in a little show titled, Will & Grace. I enjoyed writing about it then and it is again being written about during another important time in my life.  I will wait each week for the new episode, like I did then but, I will watch reruns on Hulu and record and watch later, new episodes. Not much has changed but yet everything has changed. As Sarah McLachlan sings (from Spotify), “Everyone is waiting”.

Lots of health and love.

~A

Friday, September 29, 2017

As we conclude the 2017 RA Blog Week, I want to send my heartfelt thanks to Rick Phillips for organizing this event! This has been a wonderful experience and I am grateful to be a participant! It has helped me grow as a writer and I’m very much enjoying my new found writing legs!

The last writing prompt asks participants to give a shout out to our fellow bloggers. What did we find helpful, useful or creatively interesting? My fellow participants did not disappoint!

One of the blogs that I found to resonate the most was an entry titled, Sexual Revolution by Autoimmunity Girl. Her discussion about how we perceive ourselves with an autoimmune disease was one of the best, I’ve ever read. I connected so much with her writing and want to thank her for her openness.

Your Life with RA, has one of the most helpful articles regarding interactions with your rheumatologist. If you are considering a new rheumatologist or need to find one, the six helpful steps will guide you to success. This is an especially important topic since anyone with a chronic illness needs to interact with physicians.

Two bloggers have great responses regarding partners. Rick Phillips wrote a letter to his wife, expressing his gratitude for her patience with his autoimmune disease. Their love is goals!  The other blogger is, As My Joints Turn: My Autoimmune Soap Opera. The author says that despite her lack of a human partner, she has Georgia. Georgia being her faithful dog!  I loved reading her letter to her four-legged partner! Too cute!

I’ve had the best time doing these writing prompts! I want to thank everyone for reading and sharing! I also want to acknowledge how amazing our community is!

Lots of health and love.

~A

Thursday, September 28, 2017

Hobbies! Everyone has something they are passionate about. But, when you have an autoimmune illness, hobbies can be tricky. Hence, I think my career as the next Ricky Bobby is probably not in the cards!

In college, I loved beading. I loved being so creative and making something beautiful and functional. But, when I was diagnosed with PsA, I couldn’t do beading as frequently due to its tedious nature. Now, I reserve beading until I know I will have time to recover. My hobbies are scheduled and I take it easy and don’t do as much detailed work.

Hobbies aren’t just limited to coloring, beading or something similar. I have a friend that is a health enthusiast. She loves going to the gym, reading about nutrition and cooking. Another friend likes to bake and distribute the yummy goodies to her friends (lucky me). Hobbies are wonderful because they can be tailored to anyone’s strengths. Beading, working out, cooking are just the beginning!

Hobbies are great for people with an autoimmune diseaese. Keep in mind, moderation is key, know your limits and I suggest not doing anything that would cause a major flare. Hobby with mindful aplomb, spoonies!

Lots of health and love.

~A

Wednesday, September 27, 2017

I have thought a lot about Wednesday’s writing prompt and would vacillate between participating or not. I don’t have a partner, and early in my diagnosis, I was incredibly sad I did not. The idea of being potentially disabled, as an older person without children or a partner, was a lot of worry and heartbreak. I worried that a potential partner would be scared off by my disease and an uncertain future. And while I am still sad that this life event hasn’t happened, I feel strong enough to know that whatever comes I will be financially and mentally functional.

This writing prompt is not about sadness, this is about strength and an understanding of each person’s individual situation. I’m very grateful for all the help my parents, friends and my medical team provide. While I am currently not in a relationship, I acknowledge the sacrifices those who love someone with an autoimmune disease provides. To all of you, I encourage you to take care of yourself. Please know that your sacrifices are greatly appreciated by your spoonie.

Lots of health and love.

~A

Tuesday, September 26, 2017

Today’s writing prompt is about sharing tips and tricks for getting around the physical difficulties and limitations that often accompany an autoimmune disease. While I acknowledge that what works for one person may not work as well for another, I think there is a lot we can learn from others. For instance, one of the earliest treatments that I tried was acupuncture. I had a family friend recommend their acupuncturist and I thought it would be great to try. I am not a needle person but, the benefits would far outweigh any misgivings I might have had. I went to several sessions with no discernable benefit. I also could never relax thinking of all of the needles. However, I completely understand how others are helped by it.

One of the more interesting things I have tried include floating, where you get in a bathtub full of salt that allows you to float on the water’s surface without using muscles or joints. It is glorious and I highly recommend! I think it has something to do with taking the pressure off of my joints and it just helps me to relax. In addition to floating, a regular massage has been beneficial therapy. I also like to use a sauna or steam in the winter.

In terms of working with a disability, I recommend a Pilot Dr. Grip Pen. This was actually recommended by the Arthritis Foundation and I have found it to be very helpful, especially when I absolutely need to write. I often type with a wrist guard or other device to help stabilize my wrist. I also invested in a kabooti chair pillow. It is an added cushion for my spine while I sit and type.

I was also fortunate enough to have a wonderful family that has helped support me financially by allowing me to live with my parents and work part time. My parents have been a huge blessing and I couldn’t do it without them. Not needing to travel, for work, has also been great for me since I can conduct business through Google Hang Out or Skype. I also wear a mask when appropriate and I have to be out in flu and cold season, for work.

My goal is to share this; anything is possible with an autoimmune disease. It may mean modifying or expanding your perceptions of work and life balance. Not everyone will have the same success with floating that I have but, if it helps one person that it was worth discussion. I would also like to encourage those with an autoimmune disease to know your body and your limitations and don’t get discouraged when you think you should be able to do something and can’t. I hope that everyone can find some relief and more importantly a cure!

Lots of health and love.

~A

 

 

Monday, September 25, 2017

I am participating in 2017 RA Blog Week at www.radiabetes.com/2017. Everyday for a week, the participants are given a prompt and are asked to blog their responses. Monday’s prompt is regarding mental health. This has been especially challenging for several reasons. My maternal grandfather passed from complications of RA and a maternal auntie that passed from lupus complications. My first memories of Papa were of him walking with a cane and always in pain. I understood that I had to be gentle, even giving him a goodbye kiss, because of the pain. His hands and limbs were deformed. My grandma, his wife, had dementia and diabetes. In the end, they could not take care of each other and spent their last decade together in a nursing home. My aunt was afraid of the medication that was given (corticosteroids) to manage her lupus and subsequently passed from kidney failure/heart issue.

When I was diagnosed with psoriatic arthritis, in 2014, I remember feeling relief and sadness. I spent the few months leading to my diagnosis, doing medical testing from lyme’s disease to histoplasmosis. When my rheumatologist came back with psoriatic arthritis, it was the culmination of months of uncertainty. It wasn’t until I was prescribed plaquenil (step therapy) that it hit me that I may suffer the same fate as my family members.

After plaquenil failed (I lost twenty pounds in a month), I was prescribed subcutaneous methotrexate. I can’t tell you how difficult it is for someone with vasovagal (sudden change in heart rate from a reaction due to a difficult or stressful event) to give themselves injections. I went through a year of emotional pain. I saw friends getting married, going on holidays, changing jobs and carrying out their lives, as normal progressing young adults. I had failed not only myself but my family for not being “normal”.

For a year, I wrestled with all of these regrets, sadness and the physical issues. I attended countless doctor appointments, lab visits and only worked part-time for my dad’s business. I tried to isolate myself from friends because I believed no one wanted to hear about my ailments. I was living with my parents, which was a blessing, because there were days I couldn’t move, let alone dress or fix food for myself. I didn’t want to be a burden on my parents but I needed their help financially, physically and emotionally.

After a year of mentally abusing myself, I decided I needed to get my mental health in check before I could get my body to a new “normal”. My first order of business was to change my workout routine; yoga, weights and running on a rebounder, four times a week. I started talking about my condition to friends and family. I got in touch with my local Arthritis Foundation office and began working on my local Jingle Bell Run. I let my other physicians know about my struggles and kept an open dialogue with them all.

Finally, I realized that this diagnosis meant more of modifying my life rather than it ending. So, I began educating myself on rheumatologic medications. Methotrexate alone was not working and I understood I needed additional medication. After much deliberation, I went to my rheumatologist armed with knowledge and questions and settled on Remicade with methotrexate. Remicade made a huge difference and I was able to start managing my condition rather than the condition managing me.

This year, I switched to Cimzia and was able to quit methotrexate. I am not the same person I was before my diagnosis – I am a stronger and more resilient me. I learned about myself and forged new lasting bonds with people. I am happier now than before my diagnosis. I still worry about my future but, I am confident that I will be okay. I am blessed with a wonderful, loving, supportive family and friends. In additon to my friends and family, I have the best physicians, nurses and staff that assist me. I couldnt do it without my medical family. I also want to recognize the Arthritis Foundation and Arthrits National Research Foundation for all that they do for the rheumatologic community, including myself.

Mental health was the first step to my physical well-being. This fight is for all of my fellow chronic illness patients and for the ones that have gone before me. Your stories continue to inspire me.

Lots of health and love.

~A

Welcome!

Thank you for visiting my blog and my first post! I am PsAMermaid. I was diagnosed with psoriatic arthritis in 2014. It has been a difficult road in finding solace with the diagnosis and I am still learning. My goal with this blog is to make my diagnosis helpful for others and to share my story – for better or for worse. I want to thank you in advance for reading my blog and I hope you find it useful. To all of my fellow chronic illness warriors, this is for you!

Be well and lots of love!

~A