Thinking back now I must’ve woken up quite a few times last night screaming in pain, and once again finding my right hand paralyzed and in on fit of pain even my jaw didn’t want to open. Something serious is going on and these doctors at the Mayo Clinic must figure it out. I won’t take no for an answer. If I have to I’ll spam each one of these doctor’s emails with pleas for help until they physically sit down together and think hard about a course of action that doesn’t involve just “dealing” with the pain of 18 diagnoses and more to come. I just seem to be falling apart and after the worst spinal tap I’ve ever had. I am still experiencing minor pains from that compared to my herniated discs, chronic migraines, and this long vasculitis flare that wont let up.
I feel so broken and these nurses yesterday just added a lot more to my pain. They tried a spinal tap and missed but kept pushing into bone 6 times until one of the women finally got the needle in then my spinal fluid came gushing out like a volcano erupting because the pressure was over 320mm/H2O and standard I believe is 80-200mm/H20. They ended up taking 30 CC’s of fluid just to relieve my pressure yet I still had a migraine and not a spinal tap headache, I’ve had one before and I know to simply lay down for a spinal tap headache. After you’ve had the variety of headaches that I have you learn the individual attributes of each one.
Since the spinal tap I slept until my fiancé arrived around 11PM but awoke to severe back pain from the 6 plunges those nurses had taken into my back. Next time I am certainly demanding fluoroscopy, as this was really painful in addition to several herniated discs and lower spinal issues. I awoke to my Mother who is also my caregiver who often gives me Ativan to calm myself down, additionally at the time she gave me a small dose of Dilauded for the pain just to get me through the night. I also awoke Venus, my loving fiancé, who came to visit for the weekend. However I woke them up about 7 more times throughout the night with surges of leg pain, spinal pain, and severe migraines with shadows meaning a cluster headache may be right around the corner. I was scared of the cluster headache, in severe pain all over diffuse but mainly in my lower spine and neck areas, and once again my right hand didn’t want to move. It didn’t quite matter the beast showed up anyway to ruin my weekend and make my case even more complex because I will likely suffer an episode in on f my Monday or Tuesday appointments since I am a day & night cluster head. These people are going to think I’m mad and have me locked up!
I was sick of it waking everyone up making them even more grouchy and exhausted in the morning. I have been typing material for my blog and a few of my other obligations. I also have been working on a GoFundMe, yes I know you can get some medical equipment I need through insurance. However I’d rather buy the better well-built products and have insurance cover a portion and pay the rest with any money I’ve raised. I know it sounds greedy but would you rather be sleeping on a spring mattress you have tons of trouble getting out of and that to relative is clearly medical equipment whereas the one I choose has a wooden backboard and footboard so it looks like a normal bed, those can be removed and the bed can be extended too, not to mention taking my weight which has been impossible for us lately because I cannot bear my own weight at all my legs are like wet noodles. I also want a nice scooter it doesn’t cost much more than the one insurance gives out so I’d rather have one meant for going down steps and heavy inclines when it needs to rather than some standard scooter with just a basket on the front. Besides this one comes with all the accessories for free including a top enclosure for rain like a fancy golf cart. The point is I am really suffering, we are financially being slammed, and I need some relief from all this pain especially when I do intense physical therapy to try and get usage of my legs back. Maybe I will make rare disease or paraplegic wristbands for those who donate with a catchy phrase and launch the campaign right before Rare Disease Day February 28th.
My mom tells me not to worry but I want a scooter I can play with the dog in and that can handle steps. I want to zoom around at 10mph and play with my beautiful dog whom I miss so much Loca my wheaten Terrier, the best blood pressure medication known to man in my opinion. Since when does the government subsidize scooter lift handicap Vans. I’m looking into a Honda Odyssey that would easily fit my scooter. Hopefully we can find a nice low mileage used one because I don’t know that I can raise enough for a brand new car especially a van that starts at $30,000 and then the costs for them to install the lift, which costs another 2-3k. The lift itself it pricey not to mention a car to have it installed in. All in all with every new thing I need NOT including any Mayo Clinic medical bills I need approximately $55,000 USD worth of medical changes to my house which includes widening all the doors and such. Hopefully I can make most of that myself freelance writing eventually I really don’t want to tell my story for money that was never my intention. I just cannot ask someone or ever beg for such a large amount of money. I’ll take the crappy equipment insurance will lend me for this moment I suppose even if it does exacerbate my injuries I will just refuse the scooter since it’s crap and lift weight so I can push myself further in my wheelchair.
I have a lot on my plate so I don’t know how I am going to get used to freelance writing like 4-8 articles a day I hope. I am working on articles, an upcoming podcast, collaboration with several companies, trying to book public talks, trying to prepare for 3 conferences, one being the Vasculitis International Symposium where I will likely speak in Jacksonville, FL in front of hundreds of doctors, patients, caregivers, and nurses who all want to learn more about this horrible rare disease that is Vasculitis. I will be talking about why I joined the Vasculitis Patient Powered Research network, which is collaboration between the Vasculitis Clinical Research Coalition or VCRC and the Vasculitis Foundation or VF who support my illness by having a sub organization called the Churg Strauss Association. I represent the members of the Patient Advocacy Committee which helps make everything more patient friendly and addresses concerns other groups and the principal investigators might have about recruitment and how to do everything better. Essentially we are the idea people. I really enjoy giving back in this way and next week I’ll write an article about my newest endeavor.
Thank you for reading today I know this is a long article and it can be long and dreary sometimes. I am just trying to tell you what’s going on and why. These public talks and projects that I’ve been getting could launch my career as a well-respected information expert when it comes to chronic pain and all 18-10+ diagnoses that I have. It’s so damn frustrating the first few months, sometimes years of advocacy when it’s hard to guest post because nobody really knows you and they see that you have a small audience. I promise get on twitter and Facebook then focus on interacting and forming a family with your readers and viewers. Even if you reply late let them know you love them and you will in return receive the rewards one would expect. I certainly am at one of the worst points of my life I’ve been given the best opportunity I’ve ever received and I’m waiting for answers on several more. Again thank you for reading and don’t ever give up we can stay strong together and if you ever want exposure just email me I will post your story about chronic pain gladly as long as you write well enough and it’s 500-1000 words with “migraine discussions” in the first sentence. Now please enjoy a pain free week and if not I wish your pain dissipates as soon as possible, I love you guys and gals for all you’ve given me in terms of opportunities. As always please share this on social media and like/comment as much as possible.