November 4, 2017

When I was diagnosed with PsA in 2014, I had no idea what I was going to do. At this point, my first therapy, plaquenil, failed and I was looking at the possibility of subcutaneous methotrexate. I was so scared of giving myself injections and cried so much every time I had to do it. But, I learned and quickly fell into a routine with my medications.

By the summer, I wanted to help others go their journey and meet people that shared a similar story to mine. I got in contact with the local Arthritis Foundation and they put me in touch with a new hire in my area. We met about a month later and, I knew right away that this girl would be a good friend and so much fun to work with! I loved her energy and her knowledge of AF! My first task was working the Jingle Bell Run. It was a lot of work and so much fun. I was instantly hooked.
The following year, I chaired JBR and the next year, I chaired the Bone Bash. Both events were a LOT of work but it was rewarding work. I was not only having too much fun and working with a now very close friend but, I was helping to find a cure for arthritis. AF had given me a meaning at what was a very difficult and challenging time in my life.
The year I chaired the JBR, I meet our youth honoree. She is a beautiful girl with golden curls and a bright smile. She and I talked about her medication and how it hurts her tummy (metho). What struck me is that even though she was on medication that most adults couldn’t tolerate, she still wanted to be a kid and play with the dogs and other kids. I knew that no matter how tiring the events can be, I had to continue to fight. The fight wasn’t about me anymore, it was bigger than that.
Last year, I took a small part time job at a local art gallery. The building is beautiful and in a revitalized part of downtown. It is exciting and fun to work there. I took the job, in addition to helping my father’s company, to help supplement my health insurance. However, a few weeks ago, my friend at the Arthritis Foundation told me about a part-time job in the area. It would be talking to doctors and JIA families, about the mission of the organization and what services we offer. I interviewed with a lovely woman and found out that I had been selected for the job!
Today is my last day at the art gallery. I am forever grateful to the beautiful and wonderful people that I have worked with. I met so many amazing people and learned so much! This isn’t goodbye but, see you soon!  However, I am leaving to pursue a fire that has been burning for me since 2014. When I get tired, all I have to remember is the JBR youth honoree and I am renewed. The Arthritis Foundation has given me so much and now, it is my turn to help give back. I am grateful to everyone that has lead me to this path. There is so much excitement to enter into a new journey! To all of those that are struggling in their diagnosis, medications, disease management and daily struggles, know that there are those out there fighting to help.
Lots of health and love.
~A

Tuesday, October 17, 2017

Have you ever done something that you regretted? I’m not talking about eating a second cookie or wishing you had done more to prepare for a Monday. I’m talking about life changing choices that in hindsight you wish you could have redone or not done. I have been better about not examining to closely to regrets. As a trusted confidant once told me, regret is poison to the now. You don’t gain anything by regretting in the present. Besides, if you learn a valuable life lesson, you have made the best of a situation that you found to be difficult.

While I believe and mostly subscribe to that advice, there are times when I can’t help but be remiss about something. Have you ever awoken and just felt that cloud? You know the one. It feels like something is holding you back but, you realistically know that there is nothing but, your mind holding you hostage? I woke up that way today. I had had a dream about a friend of mine that I do not keep in touch with. I am sharing this so that I hope that others with autoimmune issues, understand that they are not alone.
Before I was diagnosed with PsA, I was diagnosed with PCOS (polycystic ovarian syndrome). It took about two years before I was diagnosed. Although I saw about a 50 lb weight gain in about a year. PCOS didn’t change my life in quite the same way that PsA did. I still was able to do all the things I wanted to without a physical restriction. I had a friend “X” that I had met while we were both in grad school. We did hiking trails, went to dinners, drank like fish and lived to tell the tale! In all, we had a great time and were living life.
In February 2014, I was diagnosed with PsA and was put on plaquenil or in other words, the spawn of Satan in pill form. I was so sick that it caused me to not keep food down for close to two months. I lost about 35-40 lbs. But, plaquenil was not going to be a long term solution for my medical treatment. At this point, I was put on subcutaneous methotrexate. This was fundamentally the hardest thing I have ever gone through. I had to inject myself weekly, with an auto injector. It was awful. I cried for about three hours prior to doing my treatments. I would lose about two days, every week, due to my crying and the side effects. It was not a pleasant time in my life.
As the weeks continued to pass, I was getting better about my injections and no longer crying as much. I had the support of my family, friends and physicians. But, anyone that has taken metho knows, it alters your life. In addition to the debilitation of my disease, metho curbed my social life and very obviously my relationships with my friends. X had family with a similar autoimmune disease, so she was not ignorant to my plight. However, when I couldn’t attend her destination wedding, I felt the relationship slipping. I had had a flare and I was feeling awful. I sent gifts and congratulated as soon as she arrived home. I wanted to go but, it was impossible with my flare.
It wasn’t until she came home and had a wedding reception that I knew our relationship had hit a roadblock. She had invited me to her local reception hosted by her brother and sister-in-law. I attended but, little did I know that I was the only friend to attend the only family event. I was ignored and was not introduced to anyone in her family. Her mother came up to me and asked who I was. Shortly after meeting her mother, I left. I was there about an hour. I cried all the way home. I received a thank you card about a month later and nothing more.
I understood that she was busy at her reception and I didn’t expect to be babysat. However, a short introduction would have been so helpful; I knew not one person there. She had made a passive comment, when she returned home from the wedding, about how I did not attend the destination wedding. I felt so bad about not being there for her on such an important day but, it was physically impossible.
This diagnosis meant that I was no longer the same person that I was when we met. I was this person battling a disease that consumed great energy, time and money. My acquirement of this disease was not intentional but, it is a part of my life. I had to bid farewell to a friendship that I enjoyed and was sad to see end. But, we had outgrown each other. She was married and on her way to the domestic bliss that she had always longed for. I was single and looking for a life’s purpose. I let go.
Last night, I dreamed of X. I dreamed that she was in trouble and I reached out to help someone that was a brick wall. I woke up before we connected. Maybe I miss her. Perhaps, I need to examine my contributions to the ending of our friendship. Likely, it was just a nice remembrance of a life that I haven’t lived in almost four years. I don’t know why I have PsA or why it had to alter my life in such dramatic and intense ways. However, I know that regretting I have PsA is not an option. While this disease has shut the door on so much for me, it has also given me some beautiful and amazing things. I am an activist for health rights, a voice for autoimmune issues and connected with amazing and inspirational people that I otherwise wouldn’t know.
I am grateful to have this moment. I no longer dwell on things I cannot change. It is my mission to make every person’s life, that I encounter, a little better. To my friend X, I wish you a beautiful, successful journey. I often think of you and wish it could have turned out different. I am thankful for the time we shared. Finally, good luck to all those friendships that have been changed, for better or for worse, because of autoimmune diseases.
Lots of health and love.
~A

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