The party went so well at my house it was amazing, my Mother and Venus are absolutely amazing for putting together the party so damn quickly! I love both of them so much I cannot even explain it, how they got ready so quickly I have absolutely idea. We had beautiful decorations set up, a little tree for people to trite well wishes and place it on there, a big poster board about our lives, as well as all sorts of little accessories with both of our names on them that my Mother kindly ordered!
I tried literally the hardest I ever have yesterday to be active and did quite well. I sat outside with friends and family and spoke for I’d say about 2 hours which was strenuous, then came indoors to eat which again is hard due to my breathing and swallowing problems, and lastly I just plain felt like I was climbing everest greeting and sharing my story with so many guests I was dying of exhaustion. But seeing how much work Venus and my Mother put in I was stubborn and fought to stay and talk much longer than I truly should have. Sadly I ended the night nearly passing out on the couch in agonizing pain and in the weakest state I’ve ever felt. I truly should’ve been in a wheelchair all day but demanded my walker so that I would look presentable.
So the party went great I got to see about forty guests all friends and family both on my side and Venus’s which was quite a blessing. I truly feel blessed that so many people took the time out of their day to show me some love. I mean how many other patients get that sort of support? I bet not many unfortunately which is why I want to quickly mention http://www.churgychums.com/chat.html a new site I found today and chatted on briefly that’s to be used to chat wirh others who have Churg Strauss Syndrome or their caregivers/family. It’s ideal that I found it today as I want more people to talk to. I’ve been longing for more people to talk to throughout my struggle with this terribly rare form of vasculitis.
Today I just feel I failed everyone towards the end of the party, why you ask? I was very dazed, confused, and getting weaker by the moment I knew I couldn’t take anymore but how do you rest at a party being thrown in your honor? I felt so guilty going upstairs to smoke some medicinal marijuana and clear my head to relax, my beautiful and loving cousin Melissa accompanied me so that Venus could stay downstairs and entertain guests, besides my cousin wanted to talk to me alone for a little bit and explain why she hadn’t really been there for me lately. I really appreciated that and it motivated me to try once more to succeed downstairs but alas it didn’t work out. I was better but still very unsteady and unbalanced, clearly no in any condition to wheel myself around and converse with people. So I stubbornly was carried downstairs and lied down, immediately I could tell by the soothing sensation in my thighs that I needed to put on the nasal canules get some O2 and relax with a cold drink in hand!
Anyway I am glad I decided to go ahead with our plans for the part as now the Vasculitis Foundation and Migraine Research Foundation will recieve hefty donation sums from us as promised. Also I have a renewed commitment to write the local papers, political figures, and department of health about the little funding vasculitis gets compared to cancer research which is unfair since cancer is treatable and curable….you cannot rid a patient of vasculitis particularly Churg Strauss Syndrome. If anyone would like a copy of the Vasculitis Foundation’s brochure on EGPA or CSS I will gladly send it as long as you email me your info at: firstname.lastname@example.org I have tons left over as we were giving them out to guests as well as Axon Optics brochures and cards.
My week really has gone well I got a position with Axon Optics, interviewed well for the Vasculitis Foundations V-PPN or Vasculitis Patient-Powered Network in coordinating with the Vasculitis Clinical Research Consortium or VCRC! In fact my interviewer Kalen Young a fantastic woman said she can’t hire on the spot but took nothing but good notes about me as a candidate and will forward that to the steering committee who chooses each patient. Not only that but I got my engagement party done dressed well and my grandfather bought me a 14 carat gold mens ring which is nice and thick as a reward for all my efforts. what more can someone who just got out of the hospital 2 days ago ask for? I mean a miracle cure would be nice but that’s a little bit of a reach at this point haha. I’m just happy to feel just a little more like Michael again and less like a lab rat.