drapetomania

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

A gentleman caller

WHAT IT WAS:
A gentleman I thought had left the scene called this evening to ask me about my day.
(AND whatta a day it’s been.) Since I require immediate medical attention tomorrow morning, he told me he would pick me up, stay with me through aforementioned medical intervention, transport me to his house and provide a soft place for me to fall and recover for 24 hours per doctor’s orders.

WHAT IT FELT LIKE:

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Lyrics on my heart today: “Don’t mind if I fall apart; there’s more room in a broken heart.” Carly Simon, Coming Around Again

As Rafiki said: It Is Time

Sometimes, maybe destiny just slaps you right in the face.

I’ve been up all night with painsomnia and stomach junk. I was feeling depleted enough at sunrise to doze off. Then my alarm woke me up (1hr and 23mins of sleep according to my FitBit. This little electronic, sin against fashion that I wear in a rose gold color upon my wrist.) I awake to not being able to see out of my right eye. This is a fun, new-ish symptom from pseudo tumor cerebri. That’s right, folks. It is literally, all in my head. My body and brain believe that there is a tumor in my body (my cerebral area; see also spinal cord) that isn’t there. This means that I have all the symptoms of a brain or spinal cord tumor however, I do not. It is as much fun as it sounds to be. To be clear that would be none for anyone who might have missed it. And also; excruciating abdominal pain that left me in the fetal position. Clearly, an awesome way to start the day.

Luckily, my trusty productively distracting iPhone was within reach and I was able to silence the alarm and also message Ms. Teenager Diva to get up for school to no avail. I call out for Tessa to go audibly, or physically, wake her up. I text my Momma and ask if she can transport today. Normally, Tessa would be the one I would ask for this, but yesterday her truck broke down in process and it was a WHOLE thing. Momma stepped in this morning.

Continuing the juggle flow I have going, I dial my psychiatrist, Dr. Loris, to painstakingly explain the current predicament which will require me to cancel, last minute, an appointment I requested ASAP less than a week ago. Frankly everything I just said is self-explanatory. There are way too many things being juggled and I cannot keep up. If my medical history has taught me anything it is: the one thing I can consistently expect is that my physical body will break down under tremendous mental stress. I obviously am a glutton for punishment because I decided to soothe my soul by self-talking shit to myself.

Loser. Burden. Shameful. Worthless.

Again, the smartphone saves me. I open the Instagram application to access a folder of saved affirmations. Before I can even get to it, one of my favorite authors has sent this brief message out to our souls:

There it was again. Another tickle in my brain making my hair stand on end. It rings the bell of one of my first and purest passions: writing. The signs point and illuminate this path again; and I cannot resist the luster.

I shall start with editing current website content. After that I will finish the drafts I have. There may be an influx of notifications, all apologies; and also it is time.

Onward.

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.

All at once

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!)

(sigh)

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?

Just another manic Friday?

I am incredibly symptomatic following Wednesday’s epidural steroid injection. I’ve been agitated and pacing. Broke out into a hot, rash all over my face last night. Had the hardest time sleeping, constantly being roused from the edge of sleep with palpitations and chest pain. My body seems to be feeling the need to get up and run, which I guess is no surprise considering how much I’ve been laid up with the back pain prior, but it’s not allowing me to let my spine heal so that I can.

I swear, I feel like I’m caught in a perpetual Catch 22.

Trying to avoid pain medication and the potential fatal mix that can come with my other medications which all somehow fall into the central nervous system depression category, but still it. Trying to workout and lose weight without adding insult to injury. Trying to eat better but not being able to eat the fruits and veggies I crave while on a low residue, gastroparesis diet. Feeling as though I was doing much better at self-medicating with marijuana when I was younger, but not being able to do so because of my contract with pain management from which I need these epidural steroid injections, oh and that illegal thing. The same steroids that exacerbate my mental health issues and insomnia.

This is why Im a strong proponent for, at the VERY least, medical marijuana. Alcohol would be a better drug to scheduled illegally. If we can do better than Big Pharm, naturally, we should. Bottom line.

I am done with this vicious cycle and I just want off this nightmarish merry-go-round.

I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

Chris’ Healthy Heart Fund

Guys, this is my beloved cousin, Chris.

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On Sunday, February 8th Chris went to the ER with severe abdominal pain. The doctors at UNMH determined that he had a blood clot that was preventing blood flow to his kidneys.

Chris did not realize it at the time, but he was experiencing Heart-Failure.

Chris’ Heart-Failure is a side-effect from his pre-existing diagnosis of Atrial Fibrillation or “A-FIB.” If not treated properly, A-FIB causes blood clots that can result in stroke, heart-attack and other dangerous outcomes.

Chris’ heart has been determined to be at a 20% ejection fraction measurement, where a “normal” heart should be between 50-70%. (This is a measurement of how much blood the left ventricle pumps out with each contraction.)

…After 10 days of being closely monitored, Chris was released on Tuesday when medication began to stabilize his condition.

We hope to get Chris’ numbers up over time. His condition is not curable but it is manageable with medications and serious lifestyle changes.

Chris needs rest. He will rely on a number of medications for a while; some of them he will be taking for the rest of his life.

Chris still has a clot near his heart that is preventing him from getting a shock-treatment that would likely improve his situation.

Chris’ existing health insurance expires in March! His doctors have advised him not to go back to work until his overall health has improved considerably.

This fund will help assist Chris with medical bills and will help support a program of healthier eating.

Chris needs all the help he can get as he is transitioning to Medicaid (and whatever else he can apply for), during this financially stressful time.

http://www.youcaring.com/medical-fundraiser/chris-nelson-woods-healthy-heart-fund/308050#.VOoKe414m7s.facebook

You might have a chronic illness if …

*I refresh this list as they come to me*

Sometimes you wanna go where everybody know your name and they’re always glad you came but you wish it wasn’t your doctor’s office.

You watch House and discover more probable ideas than your real life doctors have come up with.

You see your doctors more than your family members.

You and the pharmacist are on a first name basis.

You have a medication and doctor for each of your symptoms and for each side effect caused by the treatments and medications. Repeat. Repeat.

You know exactly how long it takes for your medication to take effect.

When people say, “Hi. How are you?” you no longer instinctively answer “Fine.”

You bring printed answers to new doctor’s offices and write ‘See attached’ under medications, diagnosis, surgeries …

Walgreens is your favorite store.

You get really excited upon finding a new Morton’s Epsom Salt LOTION.