Grammie's Double Whammy

It's been awhile. Did you miss me, I wonder?  I've been drifting about on the clouds of memory fog and forgetfulness that accompany conditions like psoriatic arthritis and fibromyalgia. (My family gets a kick out of my loopiness.) The plethora of doctor appointments and hospital stays have kept me pretty occupied, as well. Since autoimmune dysfunction assaulted my life, I have come to accept most things as they appear with much less stress than before. Perhaps time heals. Now if I could just remember to schedule that massage... Having been diagnosed with psoriatic arthritis in 2014, I am much more invested in the reality of this disease now. I have read, asked questions, written, researched, traveled and cried. Knowing what I know now, I wish I wouldn't have been so hard on myself. A gift from my daughter, Alesha, may have been the the gentle nudge I needed to truly realize this. She gave me a rose bush for Mothers Day the same year I was diagnosed with psoriatic ar

*WEGO asks: Was starting your advocacy journey a hard  decision? Were you anxious and hesitant or were  you excited and ready to share your story? Tell us  how you chose to start advocating for your  condition. Advocacy in the realm of autoimmune disease was a fluid and natural process for me. My daughter, now 26 years old, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2. I had spent her young life learning about rh factors, ana tests, and a plethora of other acronyms and abbreviations pertaining to her disease.  When Alesha was diagnosed, I felt incredibly isolated. It was such a difficult place to be because I struggled with undiagnosed clinical depression. (It would be 8 more years before I realized that diagnosis), but my little girl needed me, so  I stepped out of that random and very dark place to tackle the beast called Arthritis(JRA).  Such a motivating factor gave me a feeling of power like I could divide and conquer anything!  The world wide w

As my husband facilitates ideas to make my life easier in the house , I have been adjusting and attempting to modify my attitude. May 5th marks one year since my Rhuematologist officially diagnosed me with PsA. The Fibromyalgia determination came just two months ago. Being pronounced with autoimmune diseases is kind of like running a race without a finish line. I spent a long time trying to find out what was causing the pain and fatigue, only to discover there would never be a means to an end.  Thus begins a process much like grief:   Denial - Much like when I was diagnosed with depression, I just shook my head when it began to soak in that I had an autoimmune disease. So much so, that I refused to take the meds and began reading everything I could get my hands on that would discredit the diagnosis. Methotrexate? No, thank you. A chemo medicine for arthritis? Are you crazy? The realization that my doctor might be correct in his conclusions just spiraled into a slow burn of fury.

I remember sitting with my counselor, Elaine, on a bitterly cold day, during the winter of 2014. I had been experiencing ankle and foot pain for almost a year at that point and I was not handling things very well. Since I had yet to be diagnosed with Psoriatic Arthritis, I was confused and frustrated by my physical limitations.  I was no longer working and I was completely exhausted all of the time. My big accomplishment of the day was getting out of bed,  getting dressed and making it into Elaine's cozy office that  morning.  Sitting on her couch with tears in my eyes, I described the daunting  task of housework, especially my struggles with laundry. Since the washer and dryer are in the basement, I had to gather everything from the main floor, bring it downstairs to be washed, dried and folded and then carry it back upstairs. Living in our home since 2003, this had never been a problem for me. Now, it was literally impossible. I felt guilty. My husband would get up at 3:45 am a

I am married to an incredible human being. I know. He's my husband and you would expect me to say that, right? Well,you have no idea...Steve has supported my hopes and dreams since before he married me. I am still in awe of his commitment to all that makes Ellie happy... Support is an extraordinary process. A living,breathing and consistent example of love and dedication. I certainly consider it as important as any therapy or remedy I may utilize to manage and live with Depression, Psoriasis and Psoriatic Arthritis. Perhaps even more important. When I was diagnosed with Clinical Depression at 30 years old, it was probably not a surprise for Steve. He had been living with my undiagnosed monster for eleven years. Thus began a journey of meds and therapy he did not sign up for. Still...he  loved me. As I drowned in sorrow after a miscarriage on the heels of this diagnosis, Steve stayed right next to me. He just knew it was him, not words,I needed. I was an emp

One week before my third Remicade infusion, I went to see my Rhuematoligist.I wanted to ask him some questions about my Psoriatic Arthritis,and the length of time I may have to wait until the infusions began to work. I explained that I was experiencing more pain in new places, including my left elbow, arm and shoulder. The pain was chronic and overwhelming and I couldn't understand why I was getting worse. After an extensive overview of all my symptoms, my doctor examined all of my joints, while asking about the specifics along the way. He touched certain points on my neck and back that just about sent me through the roof! This was a bit alarming to me. Although I had been experiencing overall pain and malaise, I was stunned to realize those certain points were so painful. Folding his arms, Dr. Patel stepped back and paused. His diagnosis saturated my being with a cloak of misunderstanding. Fibromyalga. What? How is that possible? I already have two autoimmune diseases that

Today is infusion day. Remicade. A biologic drug that is supposed to ultimately stop pain and joint damage. We shall see. Thus far I have used methotrexate and Humira injections to no avail. I began Remicade in December of 2014, however my therapy was stalled by viruses I had in January. So, now we begin again. Hopefully I will be able to maintain a schedule of Remicade infusions that will allow the drug to actually work. Here's why I want it to. It has been a difficult winter. December and January (even into February) are cold dark months. There is less sunshine. The cold envelops a body in such a way that people with normal joints, tendons, and ligaments can feel stiff and uncomfortable. Add psoriatic arthritis, or any autoimmune disease for that matter, sprinkle in clinical depression, and you have a mixture of ingredients that whip up an unsavory recipe. I have felt so isolated. Blogging and posting on Facebook is a constant reminder, however, that I am NOT alone. Feedback fr