Coming Down From The High

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The adrenaline rush I got as I stepped off the makeshift stage at Pier 95 after addressing the crowd of autoimmune disease sufferers made me forget about the cold coursing through my body. But, by the next day it had faded and life was back to normal. I was coughing, blowing my nose and hoarse. I was also without direction. That speech, that moment was the highlight of years of sharing my story of fighting to identify my autoimmune disease (igg4-rd) and live with the side effects of it.

I was planning on what to do next to reach others suffering from a chronic illness and chronic pain like me when my rheumatologist emailed me. She says tests confirmed her suspicions. I appear to be in remission.

“You do not seem to have any symptoms of IgG4 syndrome- just an elevated IgG4. Please let me know if any symptoms arise and I should see you in 4 months.”

4 months? That’s the longest gap since I’ve seen her in nearly seven years, I thought. I’ve spent the better part of my adult life waiting for the next medical crisis. I’m not sure I know who I am without one. I don’t know what my mission is if not to share my musings on my medical trials.

As the next two days passed, an overwhelming sadness hung over. I felt lost. The thought that my decades of agony may not have had a purpose at all made me cry myself to sleep.

For years all I wanted was to be symptom free, I thought. I wanted to enjoy my twenties, to have children, to have traveled the world rather than visiting hospitals and spending all of my money on drugs and procedures. Now that my body has left me in debt and damaged my condition wanes. Really?

I’ve cried and I’ve prayed both about my relief and disillusionment. I’ve been stumped by little decisions like wearing my hair curly or straight. The only thing that’s calmed my mind is the notion that I should be calm and be still and wait for a sign about my future.

#invisibleillness #chronicpain #chronicillness #autoimmunedisease #igg4 #disability #autoimmunewalk #tvnews #nyc #aarda #depression
#rheumatologist

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I’m Not Where I Used To Be

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Facebook reminded that four years ago today the chronic lymphadenopathy caused by my autoimmune disease led to my six surgical lymph node biopsies. This was my final one so far. It left me with a permanently crooked smile but I’m alive.

Three years ago (on the top left) I had my stomach rebuilt and my esophagus repaired for the second time. Chronic inflammation and the drugs I take to manage my chronic pain and illness destroyed them but saved my liver, my ovaries and prevent another stroke. I eat differently but I can swallow; that’s a gift.

Two years ago, my pain in my spine made it hard to walk and caused persistent headaches. Osteoarthritis in my knee from chronic inflammation hurt me too. So, I got radio frequency ablation to scar the nerves and kill the pain. I got a cane for stability and injections in my knees.

The bottom right is me now. Functioning is still sometimes a struggle but I’m not where I was and that’s a blessing. I don’t know what’s next but I know that with faith, friends, family and fortitude I will continue to move forward. And I will share what I’ve learned along the way to help others to keep fighting.I do it through my posts, blogs and memoir and now speaking in public too!

I raised $4,000 last Saturday for the Autoimmune Association for Related Diseases and delivered their keynote address at their NYC walk. I did it because no matter what name is given to your suffering everyone with one of these more than 10 conditions needs to lean on others like them so they don’t feel so alone and misunderstood.
#igg4 #disability #chronicpain #invisibleillness #chronicillness #biopsy #lymphoma #autoimmunedisease @autoimmunediseasesassociation @selenagomez @lenadunham @ladygaga @kimkardashian @halleberry @missymisdemeanorelliott

Autoimmune Walk NYC

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My praise for Alka-Seltzer cold and sinus and its ability to suppress my cold symptoms enough so I could speak at the Autoimmune Walk NYC 2017 wasn’t caught on camera but the majority of my speech is here:

I can only hope that as I continue to share what I’ve learned will motivate others to find a way to cope with whatever obstacles are in their path.

#invisibleillness #autoimmunedisease #chronicillness #chronicpain Autoimmune Walk #disability #spoonie

In The Limelight

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I’m used to being behind the camera not in front of it. I write the news but I infrequently make it. But, my memoir Misdiagnosed: The Search For Dr. House inspired organizers of Autoimmune Walk NYC to invite me to be the main speaker and lead walkers on a one mile trek.

Despite a terrible cold, I delivered an address which was captured on camera. This material was later turned into an anchor VO Sot Vo which was slated to air on WABC-TV, the station where I’ve worked for years. My co-worker Jay sent a text to let me know exactly what time I’d be able to view it. So, my friend Kiada and I fought sleep to see it. She set an alarm to make sure we’d be awake at 11:49.

Kiada’s alarm sounded a two minute warning. I sat up, turned to channel 7 then I braced myself to hear and see myself on my 42″ screen. Right on time, Sandra Bookman read the copy about the walk then paused for sound from my speech.

I was stunned by my appearance. My face appeared puffy, my waist seemed thick and my hair was wild. The tone of my voice was deeper than usual too. But, I was standing tall. I was smiling and I was confident. I spoke with authority and the message I wanted to share was delivered. I was able to step into the limelight to raise awareness for people struggling with the more than 100 autoimmune diseases; to explain the pain, challenges, frustration and triumphs of living with a chronic illness in a way anyone could understand. I was triumphant.

So I proudly shared this clip on my Instagram, Facebook and Twitter accounts. Here is a link:

 

#invisibleillness #chronicpain #chronicillness #autoimmunedisease #igg4 #disability #abc7ny #autoimmunewalk #eyewitnessnews #tvnews #nyc #RitaWilson

Speaking From The Heart

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I downed a bottle of Alka Seltzer severe cold medicine in a water bottle before I stepped on stage at the Autoimmune Walk NYC to speak. My chest was burning. My voice was fading and my nose was running but I was at Pier 95 and I was going to speak. I was going to make the friends, relatives and co-workers that supported me and came to hear me proud.

I stepped up to the microphone with my speech in my hand and I folded it in half. I decided not to read it. Rather, I chose to speak from my heart. I told them I got a triple a plan; a plan to accept, adapt and achieve.

I said, “William Shakespeare asked: “What’s in a name?” I submit to you that there is freedom and power in a name. Knowing what I had led me to Mass General Hospital to the Igg4 center; a place where hundreds of other people suffering like me receive treatment. Knowing what I had let me know that the procedures is endured were necessary; that my illness was not just in my head. The name of the sickness freed me to find the best doctors to treat me. It also released from the fear that there was no hope for me. Accepting I had an autoimmune disease, like most of you, meant understanding that I can’t be cured but I can be treated; I can have a better quality of life.

Once I came to that realization, I had to learn to live with my chronic illness; that has required adaptation. For better or worse, I’m not like everyone else or even the next person afflicted with the same autoimmune disease. I had adapt so I could continue to achieve all that I want in life.”

#autoimmunedisease #chronicillness #chronicpain #invisibleillness #autoimmunewalk #igg4 #nyc

Ten Dollar Gratitude Lesson

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I was rushing to catch the light rail home after working on Labor Day when I decided to buy a corn muffin. I figured I deserved a treat. I brought my lunch, ate fruit for dessert instead of a mountain of candy and I competed more parade stories than I care to remember. I was tired but focused on the things I have yet to do when a man approached me.

“Miss, can you please buy me a cup of coffee?”

His manners struck me because no one else on the way home seemed to have any. Families blocked the stairs at NY Penn and didn’t move when people walked up. The handicapped section on the train was taking so I had to search for a seat. People pushed on the stairs to catch a train on track five at Newark Penn Station. And, I had to give the side eye to a lady who pushed into me as I got to the exit door.

I turned around and a man, maybe my parents age was next to me. He too had a cane.

“Sure, I can do that.”

When I ordered my muffin, he said, “that sounds good.”

So, I asked, “are you hungry?”

“Yes, I am. I’m tired of being homeless and begging but I’m so hungry.”

“I’m sorry things are so hard.”

“I can’t work because I’m too weak.”

I thought, I’ve felt that way myself.

“Well, tonight let me get you something to eat.”

I happily spent the last ten dollars in my wallet. I was grateful I had it to spend. I don’t have much but I’m grateful for what I do have: a job, a home and food to eat. None of it may be perfect but I’m doing okay.
#autoimmunedisease #invisibleillness #chronicillness #chronicpain #homeless #nyc #newarkpennstation #gratitude

A Chance At Relief

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“How are your joints?” My rheumatologist asked as she bent each limb and stretched them to test my pain and flexibility.

“The osteoarthritis in my hips, knees and feet is still there. They still hurt but there’s nothing new,” I responded.

“Do the joints still swell?”

“No. I can walk up to three mikes a day with pain but not swelling. Running and biking are a problem so I don’t them. I do what I can without hurting myself. I’ve adjusted.”

“Good. We have to check your immunoglobulins but I think you can reduce your plaquenil. You may have entered a good phase. Well will also do an abdominal scan to check your organs; that’s important. But, you’re looking good.”

I could barely wrap my brain around what my doctor was saying. I hadn’t reduced a pill in nearly five years. I’d often added to my collection but cutting a dosage was something I never thought would happen. I never considered remission because I’ve been so sick for so long without a break. Even if get just a few months of relief, I’ll take it, I thought as I happily went to give blood and schedule my scan.

#remission #disability #chronicpain #chronicillness #autoimmunedisease #igg4