Hi ladies and gentlemen,
This post is rather long so feel free to skim it and come back to peruse at your leisure! As you can see I haven’t written in a while, though it isn’t without reason as always. It seems at times now my illness gets the best of me for longer and longer spans of time but I will continue to fight back. You can see clearly I start out in the title as describing my life as “somewhat hellish”. This is true but before I can allow myself to continue I must say I use the word somewhat very deliberately someone always has it worse than you. So before I go on talking about myself I want to say god bless those without insurance, who’ve been orphaned, who are on the streets wanting to find work and so very many others I cannot even mention I’d go on for days. Anyways last week was a landmark in my life… I took my first two steps and I am very proud of that, I passed out immediately after due to the pain from the effort but it is a notable achievement at this point in my life so I figured I should mention that. Right at this moment I am fighting horrible chest congestion and wheezing that’s causing me to use my O2 constantly, take nebulizers, and2 or 3 inhalers daily 1 acute, 2 preventatives. I guess you can say all is well except I’m fighting to breathe and I’m in constant pain of one form or another. Word to the wise boys and gals painkillers in large amounts will make it harder to pass stool it’s a shitty but chillingly true fact and many on my dose of painkillers are on laxatives for it, I am not at that point yet glad to say. Anyways enough about stool lets talk about a bit of everything get it all summed up. That way if I don’t get another post out this week you have a long one with a few recent pictures to chew on while I continue to try and write more for you each week, month, and year that goes by. I want to chronicle the solving of my case and advocacy events by live tweeting and blogging for those who cannot go.
I don’t want to seem pessimistic but it does seem as if some of my CSS rashes are in their starting stages again on my right arm and I hope its just folliculitis instead. I am pressing on with my campaigning for migraines, cluster headache, and vasculitis primarily at the moment. I am attending both the International Vasculitis Symposium in Fort Lauderdale, Florida as a guest and Patient-Partner in the V-PPRN, which should surely be a blast so long as I’m not in the hospital for it! Even when I know I need fluids I try to save those hospital beds for people with broken limbs and stuff, I can go get hydrated at urgent care if it came to that. I am just dreading all the flying and the severe inconvenience of being handicapped in a public airplane nowadays. They claim it’s a “Full Body Lift” service but I usually end up moving my entire body like a damn trapeze artist with my arms and I must say my arms are regaining a lot of strength from it.
I like to balance my advocacy so I’m also attending the American Headache and Migraine Association conference in Washington D.C. which is again a first for me and I really look forward to it. We are flying directly from the last day of the Vasculitis Conference to the AHMA conference given my health is well enough to make the journey by then, it’s a tight schedule but it seems like a fun group over at AHMA and i’ve been a member before but never made it to the conventions because they were all 1 day and west coast. It’s kind of hard to explain to my grandparents I need to spend a bunch for a one day conference I am not speaking at nor am I volunteering with currently, though that doesn’t mean I wouldn’t gladly be depending on the task at hand. Heck Headache on the Hill was only 1 day and I was winded and vomiting even though I hadn’t eaten in days in anxiety and excitement combined with nausea and sheer pain. I just hope through intense physical therapy I can make it quite far in the next few weeks in order to conquer these two advocacy events. I shall see people dear to my heart at both and I most certainly look forward to the weeks ahead!
Today I find solace though in the fact that my beautiful Wheaten Terrier Loca is sleeping right beside me after a few good belly rubs and letting me hug her a whole lot (she really is like a teddy bear), she finally fell asleep and I can hear he blessed little heart snoring next to me. Lately she’s all that can make me smile. I love her snoring, her unique dog purrs as if to say “ahhhhh that’s the good spot” when I scratch her ear or belly, and I love her capacity for kindness, caring, and love for other dogs. She has boundaries no doubt she doesn’t want any dog she doesn’t know near me when I’m dreadfully sick. Heck she’s cautious about people that approach too my fiancé has had to yell at her for baring her teeth and growling when she was trying to sit next to me when I was feeling terrible. She takes care of all of us above is my mother right after gallbladder surgery she can tell who’s feeling sick and she gladly licks the pain away and cleans any open wounds gently.
Feeling terrible for me lately is what I’d describe as:
- Waking up soaked in sweat…every time from pain no matter what temperature and pillows or pajamas you use nothing helps significantly enough besides taking a shower which is quite difficult when you don’t have control of your legs yet.
- Having to “run” to the bathroom every 20 minutes due to pain meds
- New rashes and very slow healing of old ones
- Having to wake someone up every time I want to move
- Watching the same shows over and over that someone records on DVR (I typically don’t have the remote and if I do the TV is off and I’m squirming in pain)
- Nobody noticing when you cry anymore because you hold it all inside and only shed a few tears when you know it’s only a matter of time until you explode
- At times allowing cluster headaches because they’re my only reprieve from my other ailments which have no remedy
- I think about suicide on a daily basis for you psychologists out there no I do not have a plan and yes I am on depression meds but clearly not enough
- I can’t remember the last time I answered anyone through Facebook Messenger, LinkedIn, email, Twitter, text, or phone call it’s a cry for help to me is what it is because I can’t get on the laptop as much anymore I just can’t until I find a solution to this full body agony. I won’t live suffering every day of my life not knowing whether my fiancé will have to take off to drive me to the ER.
- I’m on probiotics now, hemp oil, CBD lotion, stronger lidocaine lotion, more steroids, more antibiotics (seems like I’m always on one), I have to smoke marijuana which doesn’t help my lungs and no vaping doesn’t help the coughing. I only smoke now because it helps me eat 1 damn meal a day, we can’t afford more, I hate actually having to do it in a state where we legalized it but the beauracracy slows down the distribution of medical cards to terminally ill patients like myself and the opening of medicinal dispensaries.
- I go to sleep every day with this disease wondering what will dysfunction tomorrow, what will pain me, what excuse will I have for not writing yet again.
- Itchy, bleeding, and then inflected vasculitis sores, I also tend to pick and my face when nervous and since my mom had surgery just over a week ago I have some nasty marks on my head but it should all heal up and we’ve covered it with bandages.
- Not being able to hold your head up with neck and spinal pain like your spinal column is going to collapse at any moment, that’s why you wear a neck brace and prefer support over comfort with them.
- Not sleeping every night, not some nights, and finally passing out due to exhaustion at some point during the day usually around 3PM or so unless I have physical therapy.
- Chronic Migraines 24/7 & “mild” cluster headaches 2-3 times a day that don’t disappear no matter what procedure, medication, or alternative therapy I try. The O2 works for the clusters as does alternative medication however I highly suggest you consult the CH.com and CB.Org boards for information on that type of relief.
- There’s a lot more I could list but I don’t want this to be a sob story this is a life update if you want to know my entire life then get in contact and get to know the real me.
Damn me sometimes I just cannot follow through and write like I damn well should sick or well I should be able to write at least a small blurb. I owe that to you readers at last a poem or have a guest post if I can’t write, perhaps link back to old, but successful posts for the newer audience. Again I apologize for my absence and I use this blog to vent so I hope to be on here often if not my life is probably not going so well so feel free to contact me I’d be happy to receive your emails, inquiries, and all questions replying to you in a timely fashion. Urgh I guess I spoke too soon once again the stomach is acting up fun times when you need to hope someone isn’t in the wheelchair accessible bathroom and need to be carted around in one of these uncomfortable modern chariots, heck wooden seats would likely be an improvement to the rough ride of my $450+ wheelchair I feel so ripped off I thought it’d be top of the line and solve the issues of the conventional wheelchair. It seems I need to get an old wheelchair and get working on solutions myself in the garage with my dad. I can do the electronics and he can cut and solder the aluminum framing.
One thing I’ve learned is you can’t rely on the medical industry for everything sometimes the best solution to a problem is literally right under your nose or right in front of you; that next idea can come from anywhere you just need to sort out what is logical to try and complete. Unfortunately complex projects aren’t always what gets you a patent or licensing deals so focus on one project at a time and if you hit a roadblock move on to the next project for a few days and come back to it with a fresh mind. I know this is a long blog entry so thanks to all who read it feel free to leave replies or email me. Lately I haven’t been on social media as much, I didn’t get in any trouble or arguments, I just prefer not to have all of that on my mind 24/7 now that I’m writing my book so I’ll be on social media at random, but when I am I will interact with everyone who wants to chat so long as I am not in too bad pain. Laughter is the best medicine so get a well trained pet(In my case preferably a dog) heck it’s free go adopt an animal that’s how we got our first dog and she was a sweetheart. I swear Loca brings me smiles each and every single day; she is my best medicine for blood pressure and heart rate I couldn’t ask for a better companion. Best wishes to you all and your families I hope you’re enjoying the spring! I sure am planning on a good summer I hope to finally graduate and claim my degree in politics so that I can pursue an MBA or Master’s in a Healthcare related field. Above is a picture of my mom and myself after re-matriculating after 3 years away!