I’ve Become A Passenger

  "Now it is well known that when there are many of these flowers together their odor is so powerful that anyone who breathes it falls asleep, and if the sleeper is not carried away from the scent of the flowers, he sleeps on and on forever"

Exhaustion was now my constant companion. Deep, heavy, debilitating, complete, all encompassing, weak exhaustion. All I could do was get out of bed and get dressed. Sometimes, just getting out of bed was all that I could accomplish. I didn't need the sweet smell of poppies to put me to sleep. This was totally not the get out of bed and go to the swimming pool at 5:30 in the morning gal. My eyes were still blurry and I was trying to do my part as the Publicity Chairwoman of the Festival of Trees a charity to help children at Primary Children's Hospital. I felt very grateful for 2 good hours a day. See Three Ring Circus - Symptoms.

Help was on the Horizon The Internist

As with the other doctors he was great. Up until now everything was a mystery until he saw the ANCA blood test result - positive. He said he finally knew what was going on with me. He ordered a CT scan of my sinus and an x-ray of my lungs. He set me up with a Rheumatologist and told me I had Wegener’s (Granulomatosis with polyangiitis). 

We are now 5 months after the attack on my eyes. I was getting weaker and weaker. Always in pain, my chest, knees, hip, ears and face. My balance was all off. We had visited every doctor imaginable. My patient husband and I have probably spent enough money on doctors and tests that we could buy a small luxury car. (just kidding) But we are in the USA with the best medical treatments available. No complaints….Sigh…

Rheumatologist #1

The ANCA test and a referral from the internist finally got me into a rheumatologist.  He said it sounded like Wegener’s but not everything was in place for that. He started me on prednisone. Can I say here how much I hate that stuff? The weight gain is just not fair!!! He wanted to have whatever was attacking my eyes stop. As soon as I started the prednisone I came back alive somewhat. That was important, my responsibilities were massive and I had dead lines, meetings, phone calls, meetings with the press, printers, executive board meetings for the Festival of Trees. 

Then after a while on ‘the drug that shall not be named’ he put me on Methotrexate. Methotrexate is a chemotherapeutic drug that weakens the immune system to get the body to stop attacking itself. I researched it and decided I would rather give myself the shots over taking the oral medicine. The side effects weren’t as pronounced.  I really improved on the Methotrexate. The extreme exhaustion was lightened. I explain this exhaustion as the feeling you get after running a marathon, crossing the line and going into a joyous limp body. However, this exhaustion comes after no exertion and there is no joy in it at all.

Sometimes my husband would drive me places because my eyes were tired and blurry.  Sometimes my body would play an evil trick on me and just stop moving when I was in the middle of meetings or driving the 45 miles to do all my publicity errands. It is extremely hard for an independent woman that has run her own business for years to become a “passenger”.  One day, I exclaimed to my husband “I’ve become a passenger” like it was a black mark on my character. Caused him some chuckles, but I was serious.

I pushed myself very hard to get through our Festival, the first full week of December. I did my best to not let how I felt be seen and my friends were incredible supports. I love serving my community by helping with that Festival. It has been part of my life since 1998. 

My Rheumatologist watched me go excitedly through the process to help this charity event come to fruition. When it was over he kindly told me that my inflammation level was extremely high and he rarely if ever does this but, in my case, he needed to say it. "Under doctor’s orders".... I was to give up my charity work. Although it is something I love, and it didn’t feel like stress, but it was still stressing my body. I think that is the first time I truly felt somewhat broken, at least my heart was. He also told me to see an ENT (Ear Nose & Throat doctor.)

Being of service to others is what brings true happiness.
-:- Marie Osmond -:-