Tag Archives: scary shit

The C word again

Posted on by
10

I walked into the house, carrying a soda, a Gatorade, and a bag of new clothes, talking to Mike about school systems that suck and make parents of special needs children more stressed than they need to be. The bad news that I’d just heard weighed heavily on me, and all I could do was shake my head and rant about how ridiculous it was that a school does not understand special needs childrens’ problems.

We spent a few minutes saying hello to my mom and sister, and then my mom looked at me and motioned for me to sit down. In barely above a whisper, she said she had to tell me something. (She has a sinus infection too, which always means no voice for her.)

“Not more bad news,” I said, joking. Then I saw the look on her face, and I sat down.

“Noni found a lump on one of her lymph nodes, where she had the tumors removed from before,” Mom said. “She had a biopsy, and…”

I barely heard the rest, because I didn’t need to. “No,” I choked, and buried my face in my hands.

Not again, not again, not again.

My grandmother is a breast cancer survivor. Several years ago, when Popi was still healthy, was still working, she was diagnosed. She went into chemotherapy. It was hard, but she beat it. In fact, I barely remember the details of the day to day stuff, because I was so young, and they caught it so early. In my memory, it was over before it really began. I didn’t have time to be scared. I was too young to be scared.

Cancer has already taken away one of my grandparents. Even though there’s no reason to jump to conclusions here, I have already been fighting the fear that the people I love are slipping away. It’s been eight months since we lost Popi. In those eight months, the pain has not even slightly diminished. I have realized that it will never be any easier without him. Each event or holiday will always make me think, We’re doing this without Popi. (Hell, sometimes I even think, Oh cool, I’ll get to see Popi there. It’s like my brain is handicapped.)

Noni is going to have a scan to make sure the cancer isn’t anywhere else, so that they can get an idea of how far it has or hasn’t advanced. Then they will start treatment. All I can think of is that, in the beginning, things looked really optimistic for Popi. I’m trying not to think like that, but it’s nearly impossible not to. The fear of losing the remaining half of my NoniandPopi is crippling.

I hope my dad is okay. He’s never one to say much. He didn’t say much when we lost Popi, and he didn’t say much when we lost Brian (who was his best friend years ago). Then again, I haven’t said much (out loud) either.

I hope Biz Noni is okay, too. She’s eighty-seven. Noni is her daughter.

I can’t believe this is happening again.

I can has Crohn's Disease?

Posted on by
15

Seriously. I want Crohn’s Disease. Do you know why? Because it would be a diagnosis, finally, and it would make sense; my maternal aunt has Crohn’s Disease with rheumatoid arthritis.

Things are about to get icky. If you’re not down with the icky, I totally understand if you leave right now.

Let’s compare my symptoms to those of Crohn’s (and if Firefox knows what’s good for it, it will stop telling me that I am misspelling Crohn’s).

My Symptoms:
These occur during a flare-up* of whatever the fuck autoimmune disease I have.

  • Bubbles inside of mouth
  • Dull aching to sharp aching pain in arms, legs, hips, back
  • “Patches” on my hands and fingers that feel as if they have been scraped when touched but there is no visible injury. I’ve had these invisible patches since I was a little kid. I always thought it was normal.
  • Little “cysts” on my hands and fingers
  • Blood in and with my stools, very hard stools
  • Little “cysts” on my asshole (told ya it was about to get icky)
  • Styes on both eyes

*I say flare-up because the symptoms are not always present. I can go hours, days, weeks, sometimes months without any symptoms, and then BAM! A few of them or all of them pop up at once. Sometimes, they only last a few hours. Sometimes, they last days.

Symptoms of Crohn’s Disease:
Taken from MayoClinic

  • Diarrhea, though I have heard of some people with Crohn’s who have the opposite problem — my problem
  • Abdominal pain and cramping — When I looked up the symptom’s for Crohn’s last night, I suddenly thought of all of the times I had severe abdominal pain and cramping. I’d always thought it was normal, just my body’s way of saying, “Time to go!” but now I’m thinking it isn’t. Should I add it to the list?
  • Blood in your stool — Hi. I’ve filled a whole toilet with blood on several occasions. Talk about being on the verge of passing out. That is so not normal.
  • Ulcers — Meaning, ulcers in the intestine and in the mouth, similar to canker sores. My little “bubbles” don’t hurt, but they’re there. I have no way of knowing if I’ve got ulcers in my intestines without going for a colonoscopy. I’m not very keen on doing that.
  • Reduced appetite and weight loss
  • Fever
  • Fatigue — Fuck yes. I’ve had a lot of late nights lately, but sometimes even when I’m getting what I think is enough sleep, I’ll get hit with this “bone tired” feeling that I’ve never, ever felt before.
  • Arthritis — Even though all of my arthritis tests keep coming back normally, I’m pretty sure my pain is arthritic. I know I’m not crazy. Then again, crazy people don’t know they’re crazy. Oh fuck, I am screwed.
  • Eye inflammation
  • Skin disorders — You can file styes and eczema under “Skin Disorders.” I’ve had eczema for years but never attributed it to anything. More and more I am finding out that things I’ve always dealt with are probably related to my Mystery Autoimmune Disease.
  • Inflammation of the liver or bile ducts
  • Delayed growth or sexual development, in children

So is it Crohn’s? Maybe not. But I need a damn diagnosis, before I go crazy. It would make sense for it to be Crohn’s, since my aunt has Crohn’s.

I go back to see my PA on Friday. I haven’t seen her regarding all of this in a while. I was seeing a rheumatologist for a few months, but he is either very absentminded or crazy, because every time I see him he has a different plan or take on things, and he also seems to forget what I’m there for. I want to update Pam (my PA) with all of my symptoms and pick her brain on the Crohn’s. If I’m going to test the Crohn’s waters, I’m gonna have to get a colonoscopy, which is totally not cool but probably very necessary. Last time I mentioned my potty problems to her, she said if they persisted I would have to go get one. I became very careful not to mention it again because the thought of anything touching me there or going inside there sends me into tears. I have a good, very personal reason for not wanting to get the procedure done, but the symptoms have not gone away. They seem to be in sync with the rest of my symptoms, all popping up around the same time and then relaxing a little.

I think it’s time to take the next, very scary but very logical step and arrange for the colonoscopy so I can either check Crohn’s off the list or adopt it as my official autoimmune disease, and definitely so I can make sure none of my intestines are damaged.

Either way, it’s time to get back to sleuthing. My life is pretty much on hold until I solve my own episode of Mystery Diagnosis. I want my life back, and I’ll take whatever comes with the Mystery Autoimmune Disease if it means that I can have a diagnosis and treatment plan. I don’t care about a cure at this point. I just want to be able to have the future I’ve always wanted: marriage, a family, continuing with my career and other projects, continuing with my writing. I definitely can’t have any kids until I know what is going on.

So, to the doctor I go (again)!

PS (01/28/2010): Just fixed a bunch of typos. Sorry about that.

Now it is real

Posted on by
2

Would you stop playing the fucking DS? I screamed in my mind.

I stood with one arm on the top of the rocking chair Mike sat in. When he rocked, I reeled.

Stop fucking rocking.

I watched my grandfather put one hand over his chest while his left arm sat on the arm of his chair, tensed with pain and numbness.

Is he really still trying to watch TV?

Followed him with my eyes as he got up from his chair and sat down in the chair next to the dining room table.

Make it stop.

I watched my grandmother put the blood pressure cuff around my grandfather’s arm. Watched him fuss over the position of the wire from the blood pressure machine. Saw the pain in his eyes.

The blood pressure cuff tightened and the little machine measured. Even if I could see the numbers, I wouldn’t know what they meant. Had the doctors told Noni what good and bad blood pressure numbers are?

Mike shut off the DS. For a moment I wondered if his stony exterior was disguising the memories running through his head, memories of his little brother having a stroke.

She said something that meant, “You’re blood pressure is fine,” but the words themselves meant nothing to me. “I don’t think it’s your heart,” she said.

I didn’t relax. I was under water.

December 2009 Goals

Posted on by
4

I’m VERY goal-oriented, but I tend to take on HUGE things and pile myself with too much to do. Recently, I’ve tried to break that habit by setting smaller goals at smaller intervals. Every month I set a few small goals that are more achievable and less stressful.

Last month, I tried to:

  • Write a novel — and FINISH it, dammit!
  • Finish designing Freaking Bookworm.
  • Give Perpetual Smile a face lift with a customized design.

I managed to write about 60% of Secondhand Mom, my NaNoWriMo novel. I also started working on Freaking Bookworm. With a whole lot of life thrown at me all at once (chronic pain/disease getting worse, work, and finding out that my Popi has cancer), I got pretty slowed down on these goals. BUT — and I say “but” very loud and proud — I did accomplish a lot. I got very close to two of my three goals, so I can’t complain.

With everything that is going on, I need something to focus on, WITHOUT OVERWHELMING MYSELF EVEN MORE. I have a hard time not overloading myself. The last thing I need right now is to send myself to the ER for a nervous breakdown. BUT — and I say “but” very loud again — I need goals like a junkie needs heroin. I’m a goal junkie. An overachiever, if you will. So, how to get my fix without overdosing?

There is a LOT that I want to do right now, a LOT that I need to get done, and a LOT going on in my personal life. The wants I need because I need to try to stay as happy as possible. This means satisfying the muse (writing the novel, working on personal side projects, etc). The needs, well, they need to get done because my clients want their shit done, rain or shine, whether my fingers and toes are attached or not. Plus, I’m broke and I need some money. The chaotic, shittiness of my personal life needs to fuck off, but it’s there nonetheless. That part of my life cannot be changed. I’m having a hard time with that, too.

So, goals. Right. Getting back on track.

  • Go to my writers’ group, every week. This will encourage me to keep writing, be it THE NOVEL or other stuff. It’ll also keep me sane.
  • Spend lots of time with Popi. Make him laugh.
  • Buy a camera and start taking tons of pictures of the people I love, because for some reason there are no recent pictures of anyone.

There. Simple enough, right?

Because you know you want to know

Posted on by
2

Here’s an updated version of the symptoms list I posted in June 2009. Same deal: for my reference, hoping someone might say “Ah-ha!” and diagnose me. Warning: some of this is gross. Don’t read it if you think I’m sexy.

  • Dull and achy to very sharp, stabbing pain in fingers, hands, arms, legs, hips, knees, feet. Migratory and happens at random. Could last seconds or days.
  • Jello, rubbery feeling in arms and legs. Sometimes I can’t walk.
  • Weakness in arms and legs. Sometimes I collapse and can’t carry things.
  • Occasional swelling (once in right ankle, several times in base of left thumb)
  • Itchy, sometimes painful, clear bumps on hands (palms and fingers)
  • Multiple styes in both eyes. I can’t get rid of them no matter what I do. I’ve just learned to ignore them and seldom wear eyeliner now so that I don’t aggravate them.
  • Bumps on the inside of my mouth, usually on the inside of my cheeks. They’re not painful but they’re annoying and pop up all the time. They go away by themselves, but then end up coming back
  • Hemorrhoids. It doesn’t matter what I do or don’t eat. I’ve just learned to suck it up and use a lot of A&D.
  • UTI-like symptoms: trouble urinating, frequent urination, pain when urinating. This hasn’t happened in a while, thankfully, but it’s been so bad that I thought about going to the ER. Urinalyses always come up fine.
  • Hot flashes. This is new. I get overwhelmingly hot, sweat beads at my hairline, I feel like I can’t breathe, and then it’s over.

Hooray.

Also? I’d like to add that I only add symptoms to my list if they’ve been hanging around for about a week. Sometimes I’m stubborn and wait a month to say, “yep, let’s add it.” I’m far from a hypochondriac and just wanted to make that clear. Just sayin’.