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.
if anything should happen please transfer custody of my beloved children and house to my best friends, Tess and Pat. although it wasn’t easy, we have discussed that these are my wishes.
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 …
“When the heart at last acknowledges how much pain there is in the mind, it turns like a mother toward a frightened child”
. —STEPHEN LEVINE, A YEAR TO LIVE