I spent last week inpatient. After changes to medications and a respite of sorts, I came home Monday. Around 5pm, my neurologist sent me a message via their medical messaging system to tell me that we were out of options and would need to seek outside opinions from Case Western University Hospital and Cleveland Clinic; and also, we’ve already done this. This means we have finally arrived at immunosuppressive therapy to turn off my immune system and turn it back on; you know, like a computer. I start with steroids today and will start chemotherapy in the coming weeks which will last 4-6 weeks and then again at 6 months. (AND possibly also brain surgery to place a shunt.) Finally, I resigned from work on Friday.
I have so many things running through my mind. They’re screaming as they lap one another. On the surface, I feel … peace? (I think that’s what they call it. *shrugs*)
- it’s going to be weird to have so much time on my hands but really not being able to do much ‘going out’ going forward.
- It is strange to refer to someone as your “boyfriend” at the age of 39. He is neither a boy, nor JUST as friend. I like main man. EX: Maui is my main man.
- The new meds are making me hella sleepy, but the steroids will make me on edge. New meds proving to be very necessary: “God’s will be done.” Because *motions around to everything going on* FUCK. (Sometimes it’s the only word to capture the true fucked-upedness of the moment.)
- My brain needs to be numbed down to avoid burning out, but that’s all the drugs do.
The rest of it is really hard work, mindfulness, that only I can, have and will improve upon doing for myself.
Also, I have never felt better mentally and/or more sure of myself. I don’t know what’s going on now, or what will happen in the future, but there’s something delicious about ambiguity and I know whatever it is I can handle it. I’ve got nearly 20 years worth of blogging here to prove it, no matter what the ‘shitty-committee‘ that meets in my head likes to say. There is batshit crazy POWER in being fearless. This is next level. The proof is in the pudding, folks. I have a 100% survival rate this far after all. *smiling broadly*
HOW ITS GONNA BE:
- I’m not going to let fear drag me anywhere, nor reel me in. It may have a moment and I hope that is all.
- Being inpatient taught me that I’m not alone and couldn’t be even if I tried.
- People are hurting, ya;ll. People need connection with other people. Bottom line.
- I may spend the rest of my life not being able to work for a paycheck, but I promise I am going to be doing hard work.
- I will be spending the rest of my life making sure I take time to sit with the broken because that’s my character and, my biggest hope, leave a legacy of love for my children. There’s worth in that. As long as I know that to be true, nothing else matters.
Diva, while you may one day fear becoming just like your mother, just remember this, Im a strong, mutha, baby girl.
After 2MRIs, another spinal tap (STAT!) and providing enough blood to fake a crime scene, I’m beyond tired. I’m the kind of tired that sleep doesn’t fix.
I feel like a medical guinea pig. I’m always genuinely surprised when something does show up in a test because if you know anything about autoimmunity, it should be that there are many years of chasing symptoms to test. I feel like an immense burden to any and everyone that cares.
I retreat so as not to owe
My spinal tap showed increased cerebral spinal pressure, which we already knew from the vision loss. This accounts for the inter cranial hypertension diagnosis. The MRI was normal. My blood pressure is finally back to normal. This is attributed to a bad combination of dehydration from being sick all the time and lithium. Turns out lithium had been making me sick for quite some time. My doctor says we will need to keep monitoring symptoms and give it more time before we would move on to brain surgery and it shouldn’t surprise anyone that I don’t want my brain cut open.
This means giving it more time. My patience is wearing thin, but I am encouraged by other areas of my life coming together. Finances are just about straight. I’ve had more friends stop by in the past month than all of last year. Kids are back on track. My niece and nephews brighten everyday. There’s just something about raising kids that fulfills my soul. I have also had the sweet relief of knowing my kids would be watched out for and loved, genuinely, for the rest of their lives. I cannot tell you how heavily that has weighed on my heart and the enormous weight that has lifted from my shoulders. That, in and of itself, has been a major contribution to my stress relief. I am so incredibly grateful to my best friend, Tess, for being an unbelievable source of strength and comfort to me.
THIS is where I need to keep my focus.
i’m currently dealing with a somewhat life or death scenario. if you’re wondering how something can be somewhat of a life or death situation, you’re not alone. in summary, it’s because the doctor currently in charge of me medically has decided he’s some great all knowing wizard who is keen on assuming that the intercranial hypertension is being caused by a medication ( which ive been told I shouldn’t stop taking by the doctor prescribing) even in the face of lab results disproving the theory and sending you home, despite everybody you know and anything any us could find on the internet saying the condition requires immediate medical treatment.
it’s a fairly common thing for people with scleroderma to develop serious problems with their. Ital organs (heart, kidneys). i don’t know how much more patience i can extend here. all I know is that something is off and I want to get to the bottom of it. this is not conducive to my mental health.
facing mortality is tough, especially when it’s your own mortality and you’re a single mother. honestly, if im going to die, so be it. im not afraid to die. the thought of not knowing what might happen with my kids, well, i wouldn’t wish this on my worst enemy.
Ive been sick the last couple days.
Lots of sick after having the audacity to eat steak at a wedding Saturday and again Sunday while having Fathers Day dinner with my Dad. Bad move…
The being sick seems to have passed while the feeling sick hasnt OR I did not absorb enough anti-depressant during being sick. Sigh.
It’s usually hard to tell until you’re drowning … tumbling down the rabbit hole.
Kids have been quiet, doing the lazy, teenager summer schtick.
Dog is still low-key dying *sniff*
BOY friend is out of town. Family vacation. Which feels a little weird to type…
It’s strange to know so many intimate details of someone’s life and yet … not know them intimately, in that way.
See, it’s weird.
Wait … is this the rabbit hole?
I have not yet continued my last post because I, intially, needed a distraction from that hurtful ridiculousness and then all the things began happening all at once again.
I was gifted a pass to Cleveland’s LaureLive weekend musical festival from a dear friend through a local radio station.
About midway through Saturday I started losing feeling in my right thumb. Sunday morning it had spread across the palm and at one point Sunday evening I couldnt feel my pinky or any finger tips. When my entire ride side starting to lock up, I called into my doctor’s office and was reffered to the ER to rule out a stroke.
I was discharged with instructions to follow up with my neurologist for a repeat MRI, since it has been a few years, to rule MS, again. All week the numbness has spread. It’s now in my forearm and elbow, shoulder and shoulder blade. Bizarre!
If that wasnt enough, my littlest furbaby, PNut, started really struggling to breathe today.
He was so lathatrgic and just all around … well, pathetic it broke my heart. We’ve been making inappropriate jokes about him “low-key dying” for about two months now, due to his slowing down and hacking cough but I couldnt have imagined that when I walked into the vet’s office today, I would be hearing a “congestive heart failure” diagnosis. Although, I wasnt surprised to hear his heart is enlarged (the pup has a BIG heart!)
The prognosis is not good, but we will try a routine of cardiac medications over the next week and make the hardest decision from there.
Is it just me or does it seem like either everything happens all at once or there’s nothing going on at all?
Yesterday. 3:47pm. I made the following note on my iPhone:
Checking out at desk from son’s doctor appointment and I suddenly feel breathless. Im certain some sort of virus, likely the plague because I saw a woman who look like she had the plague, has just invaded my body.
Sure as shit, I woke up sick today.
Actually before I even went to bed I started feeling as if my cat had been toying with my tonsils and started this lame half cough. Then I woke up with the plague.
Now, Im lying here in a pseudo-benadryl like reality toying with the idea of creating a huge alliance of single mothers that will perform functions of the luxuries we provide to others during their illness but never have extended to us. Like making chicken noodle soup or a tuck in service. Single moms are a tough bunch so we dont need this pansy ass shit on the regular but we definitely could use some TLC when we’re sick. Being sick as a single Mom is the pits. Nobody cares that you’re dying of the plague. Theyre just like, “Where’s dinner?” or realize its the perfect time to neglect their chores because Mom is too sick to be taken seriously because you sound like a troll and cant hold your eyes open. (Thanks, Nyquil) Then, its double suckage because when you start feeling better you have to deal with all the extra bullshit nobody bothered to do because you were sick. It’s just not fair.
So Ive decided that when the cat finally actualizes her world domination plans and makes me the supreme leader of humans who provide food and defacation dispoal services, a branch of my power will be devoted to creating an alliance. We will boss kids around, dispense Lysol and chicken and dumpling soup and the world will be a better place because of it.
I went back to the gym today for the first time in almost a month. I had a lot of reasons why I could have let another day pass, but I went. I did it.
Even had that brief moment when the endorphins kicked in and I felt all euphoric. I smiled as I jogged on the dreadmill and looked out on a dreary day, thinking of what it would be like if my body would cooperate with me like this on a daily basis. How good would feel when the weather breaks and I can go for a jog outside. I imagined my hair piled up in a tight ponytail bobbing back and forth quaintly. The sun soaking my skin. The breeze hitting my bare skin as I galavant down a trail. I daydreamed of blue skies with puffy clouds, green grass, birds tweeting and little furry creatures scurrying about. Music blaring in my headphones. A good tune with good stride.
And then it all came to screeching halt as the pain my lower back shot through my right hip and down through my knee. This is what has caused me to stay out of the gym to begin with. It’s an old injury, a herniated disc that actually got flared up when I ended up in the hospital last month, which was followed by a flare up of my gastroparesis. This meant I spent a lot of time laying around and there is nothing worse for a herniated disc than being in one position for an extended period of time and once it gets flared up, any position becomes pretty much unbearable. I can’t sit too long. I can’t stand too long. It’s stupid.
Thankfully, the solution is usually pretty simple. Well, as simple as having an epidural injection in your spine as compared to say … surgery. Now, it’s just a matter of time. Waiting for the doctor to get approval from the insurance company and scheduling the procedure.
But Im frustrated. I have to listen to my body and it is screaming obscenities at me right now.
Dedicated to the 50 million people in the United States with autoimmune diseases.
If you guys only knew how often I actually sing “Part of Your World” from The Little Mermaid …