Sunday, June 17, 2018

This week has been a long week both mentally and physically. I believe that my iron levels are low. I am having a difficult time staying awake; I sleep about 12 hours a night and a couple of naps during the day. I have a difficult time concentrating and therefore, my work has been super difficult to complete.

Metho and Cimzia allow me to function 70% of the time but, the side effects are sometimes tough to deal with. I am doubling my iron supplements and seeing if this helps. Weeks like this make me remember what we are fighting for and why it is imperative that we keep the ACA pre-existing clause in tact.

I hope everyone has a lovely week and I am proud of my chronic illness warriors!

Lots of love and health.

~A

Sunday, June 10, 2018

As soon as the movie was over, my friends and I got up to leave the theatre. We had just had an awesome girls night with the best Vietnamese food and watching Ocean’s 8. My five friends and I got up to leave. This is where our stories differ. They bounced out of their seats, happy and excited to chat about the movie. They got up and left without thinking twice about their movements.

I got up and had to stretch and prepare for the pain of walking down the stairs. As I did, not wanting to be left behind, I walked with as much vigor as my cohorts. But, they didn’t have to mentally prepare, they didn’t have to endure the pain or the stinging in their joints. The pain didn’t last long but, it was definitely there.

I wouldn’t wish this illness on anyone. But, I do hope that we can educate others and start a discussion about how this affects our every day lives. I’m so grateful for my wonderful group of friends! They love and support me and never make me feel less than because of my PsA. When I am taking handfuls of pills with dinner, they ask if I have enough water. When I leave my seat a little later than they do, they wait for me. Their love and compassion mean everything. We may be different in the way we exit the theatre but, we get up and leave together, not leaving anyone behind.

Lots of health and love.

~A

Sunday, June 3, 2018

When I woke on Friday the fog was so thick I couldn’t see my hand in front of me. No, I wasn’t outside, I was in a bright, airy room, waking up from a difficult night of sleep. This week is what I call the double whammy. I do a self injection on Sunday of metho and then I go to my doctor’s appointment to get 400 mg of Cimzia injected. It happens once a month and as much as you plan for it, you never really get to plan for it.

This month was exceptionally tough. The weather did not help my cause, with a strong summer thunderstorm overnight, that quickly turned to a soupy mess of humidity and strong heat. On Friday, I had not slept well for the majority of the night. Joints were painful, throbbing and swollen by the sudden shift in weather fronts. I finally managed to fall back asleep around 6 am.

When I woke around 9, I knew something was off. I was awake but, I felt like everything was still a dream. I couldn’t concentrate nor could I focus my gaze or hold a meaningful conversation. It is like trying to concentrate when you are so tired and in need of rest. You are living your surroundings, you just can’t manage yourself physically or even mentally. I remember eating breakfast and then going back to bed to lie down. I was back in bed for an hour before the fog started to lift.

There is no information regarding how many people will experience side effects on a TNF inhibitor and a DMard but, any anti-rheumatic message board will tell you that many people suffer side effects ranging from chronic infection to reactions from the injection site. Brain fog is a common discussion between patients on Twitter and elsewhere. However, with all of hardships that my disease and medication have on my life, I will continue to take it and be grateful that 75% of the time, my medication works for my symptoms.

It took most of the day to become functional again. Like the weather, I never know what I am going to wake up to each day. However, without the medications, my life would be so much worse. I saw what this disease can do to the human body untreated, and I refused to ever let that happen to me or anyone else. Education is paramount so please, do research and be an advocate for your own health! Remember, when the fog lifts, there will be plenty of sunshine.

Lots of health and love.

~A

Sunday, May 27, 2018

With chronic illness, it so easy to forget gratitude. Chronic illness can cause brain fog and forgetfulness as well as mood swings that are unpredictable. One thing that it cannot take away is our ability to serve gratitude.

Every other Sunday, I take methotrexate for my PsA. I don’t like doing self injections and today was particularly difficult because I bled some – I am not good with blood. However, I was thankful for the medication that may sustain me another year without damage to my organs, to keep my walking unaided by a wheel chair or walking device, like my Papa. This Tuesday, I go to my rheumatologist’s office and they administer two of the most painful injections, I’ve ever had in my life, Cimzia. But, I am grateful that I don’t have to give them to myself and for the medication that can give me some quality of life.

One thing that I am learning, is that gratitude and happiness are not interchangeable. My study in Buddhism is teaching me that the two are different. Gratitude you serve to the world; happiness you feel. Both are important and have their place in everyone’s life. But, when you can’t feel happiness, you can serve gratitude. And today, while I am not happy that I have to take medication for a disease not desired, I am grateful that I have the medication. I am grateful for my friends and family for supporting me when I don’t feel well after the administration. I am grateful for the doctor’s and researchers that provide this medication. I am grateful for all of you for taking time out of your day to read this.

Lots of health and love.

~A

May 20, 2018

I know that I have not written on this blog in a long time but, I want to make a more concerted effort to write. It has been a bit of a blur. Going into the holidays, I started a new job, my PsA was well managed and I was looking forward to a new year. By last month, I quit my job and I was back on methotrexate. PsA and PCOS have amended my life in ways that have been unexpected/terrible/fabulous but, what I have not yet dealt with is the frequency or rapidity.

With my health hurdles, I am always reminded that I have amazing an family and friends. I don’t know what direction my life will continue to take. My future is more uncertain than most people but, I am going to go forward with whatever comes my way. One thing is certain; circumstances change so quickly.

Lots of health and love.

~A

 

 

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