Drama Mama

I admit it without hesitation.  I have become a Bad Blogger but with good reason.  I confess with relief that this summer is nothing like last summer.  Grace is stable! She is doing well.  She is enjoying her skills training.  She is looking forward to the start of school.  We have had no psychotic episodes.  She is not hallucinating.  Her mood ebbs and flows, but, in general, she is well on the spectrum of wellness for what is normal and healthy for her.  Taking sugar out of her diet has proven to be the key to maintaining her stability.

My daughter Eadaoin has very stubbornly submitted to putting up with in-home therapy.  I’m not sure why we are doing this.  The organization that visits our home weekly for Grace decided that they could also provide services for Eadaoin, and one of their therapists comes by weekly if not twice to see Eadaoin for therapy.  She hates it which is odd because she’s a pro-counseling sort of kid.  I really can’t blame her.  She’s not making a connection with this therapist, and she wants a new one.  Grace’s therapist is high affect and warm.  Eadaoin’s therapist is low affect and coolly flat.  She comes off as hard to get to know socially so that impression is spilling over into her professional demeanor.  She usually ends up finding me in the kitchen during her time with Eadaoin by saying, “Hey, Mom, would you join us?” I end up taking over the therapy session from there by asking my daughter pertinent questions.  Can I just say right now how much I loathe being called “Mom” by people who are not my children? I have a name.  I think we are going to have to be very direct and place Eadaoin with someone else.

These are not, however, the reasons I have fallen off the face of the blogosphere.  It goes back to last winter when I slipped on that patch of ice and hurt my elbow.  Apparently, I hurt my neck, too, and my neurologist sent me to physical therapy.  When I got to PT, the physical therapist was alarmed by the hypermobility in my neck and the general “weirdness” of it.  She decided to call her supervisor.  The supervisor began to treat me and she, too, was alarmed by the instability of my cervical spine.  I wasn’t sure what all the fuss was about.  My neck has been bugging me for years.  I was hit by a drunk driver a decade ago, and it’s never been the same.  My PT, however, told me that I needed to take drastic measures in my mobility because the muscles in my cervical spine weren’t “firing” properly anymore, thus, causing overcompensation in my shoulders and upper back.  I was, henceforth, no longer allowed to raise my arms above my head, lean over, twist, nod my head, look up in any way that would involve hyperextending my neck, lift anything weighing more than 10 pounds, and I had to make ergonomic adjustments to how I did my digital illustrations and typing as well as give up my purse in exchange for a backpack.  I didn’t really understand the point of these drastic measures, but I was told that it was vital to my healing.  I was also told repeatedly not to fall again lest it be catastrophic to me, whatever that might mean.  My PT told me that I didn’t look like I understood that serious nature of my problem.  I replied to her, “Are you trying to tell me that my head is going to fall off if I fall again? What’s really going on here?” She just looked at me sideways.

The problem with all of these mobility changes is that I couldn’t get a damn thing done.  The only thing I could reasonably do was walk around.  If I couldn’t lift anything, twist, lean over, lift my arms, look up, or the like, then I couldn’t do yoga, run, or even pull weeds in my garden! I was even told that I had to get a stool on which to sit in order to transfer wet clothes one at a time from the washer to the dryer.  What I used to accomplish in less than two minutes was taking me FOREVER.  I tried to disobey and reach for an object in my kitchen, and my husband was on top of me yelling, “Stop it! You can’t raise your arms above your head OR lift anything heavy.  Your head’s gonna fall off! Go sit down! Now! Do your PT exercises.  NOW!”

The PT exercises, of course, involved blinking and staring.  Moving my eyes from left to right and imagining myself turning my head but not actually doing it.  My PT told me that my cervical spine was so poorly supported that I was excessively blinking, unbeknownst to me, in an effort to support the weight of my head.  My neurologist ordered an MRI due to my PT’s concerns that my head might fall off.  Apparently, that crunching sound I heard when I fell last winter was the sound of the disc at C4 being squashed.  So, like so many other humans in the world, I have hypermobile joints and a bulging disc in my neck which sort of makes me like an owl with a pain in the neck.  I guess PTs don’t like this, and I was fully prepared to go back and discuss my MRI results with my PT and how to proceed but…

I was struck down.  You will recall my ode to that ambrosial potable known as coffee.  I love it.  Do you know what else I love? Chocolate.  I don’t eat very much  It’s a struggle for me due to stress and Topamax.  Topamax has zapped my appetite.  I can drink one cup of coffee with milk and cane sugar in the morning and feel quite sated.  I won’t feel the need to eat for hours.  It’s been this way for a few years now.  I’ve been paying the price for that with certain symptoms of malnutrition.  I’m really trying to get better.  Alas, I don’t think I’ve tried hard enough.

I awakened on August 10 feeling unwell.  I felt very unwell all day.  I thought I had a very weird bladder infection.  I drank cranberry juice all day long.  I woke up on Sunday still feeling sick.  On Monday, I still felt sick.  I was tempted to see the doctor.  My left kidney was starting to hurt.  Tuesday morning while taking a shower I was struck with an excruciating pain.  I fell to the bathtub floor.  It came on so quickly.  I thought it might pass.  It did not.  To make a ridiculous story palatable, I ended up in the OR in a matter of hours for the removal of a 5 mm kidney stone! Me! Apparently, it had been blocking my urinary tract, and my kidney was starting to have big problems.  My new best friend, the urologist, put in a stent and put me in the hospital.  I went home later that week with an Oxycontin prescription along with a few other weird pills and orders to go back to the urologist a week later for more x-rays and probable stent removal.

I saw Dr. Urologist today.  She removed the stent in her office which, to me, is a frightening idea.  The ureteric stent sits in your kidney and runs through the ureter into your bladder.  The doctor pulls it out through the urethra.

stent-diagram

I don’t know about you, but the idea of having someone pull that thing out of me in a conscious state when it was put into me in an unconscious state was utterly terrifying.  Alas, I had to “nut up” and just do it.  She didn’t even use lidocaine! She just used the cystocope, which really stung, and pulled that stent out.  I did not like it.

I thought the worst of it was over.  What they fail to tell you is that one can often feel the stent.  Not everyone does, but many do.  I was one of the many.  Having it gone was a relief.  So, as I sat in the office waiting for the burning sensation in my urinary tract to subside, I was told the really bad news:

“Your kidney stone was 100% calcium oxalate.  Topamax does cause kidney stones but not kidney stones composed of oxalates.  You have to change your diet.  Then, I want you to come back in three months for a renal ultrasound.  If we find more stones forming, then we need to do a metabolic study.”

What is high in oxalates? Coffee…and chocolate.  I essentially had a 5 mm kidney stone composed of coffee and chocolate.  What am I supposed to cut out of my diet from now on? Coffee…and chocolate.

I am very unhappy.  I don’t really care that I can drink oolong tea and eat carob.  It’s not the same.  :::sniff:::

Anyway, this is where I’ve been and what I’ve been doing.  I’ve been attempting to do laundry and run a household without twisting, leaning over, or lifting while recovering from emergency surgery involving a coffee and chocolate kidney stone.  I will say that I’m not sure what I think of Oxycontin.  I totally embarrassed myself on someone else’s blog, and I have little memory of it.  I also sandwiched Snowbell the Cat in between the front door and the storm door where she was trapped for about 15 minutes.  No one heard her cries for help.  My husband came home to find her squished and thoroughly pissed off but, thankfully, uninjured.  She is still mad at me, and she has a right to be.  I blame Oxycontin for that.  I was so stoned but so happily not in pain.  I will be putting that particular bottle of pills in the back of the closet next to the Xanax, the other prescription drug I don’t like.  I only took it once, and when I did there was talk of me on the couch slumped over, drooling, and snoring…on Thanksgiving.

Well, I am very hopeful that the summer drama is well behind us.  Now, I just have to keep my head on straight.

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17 thoughts on “Drama Mama

    • I was surprised. In goes the cystoscope! No lidocaine. And in went some odd wirey-graspy thingy. And then out was pulled the stent. STING! Yes, things were…irritated. I just can’t believe that I’m faced with MORE dietary changes. I’m grumpy.

  1. I hope you all feel better soon, and get that new therapist. You’ve got to be comfortable with those that are helping you.
    I totally agree with being called mum from those other than my kids. Yes I have a name, please use it. I get why they say it, but have they asked if its ok to do so. No, I didn’t think so.
    Hubby had a kidney stone least Christmas and I feel your pain. He was interstate, and rang me, and while I know he was being looked after it was frightening just not being able to be there. Haring the pain in a l over ones voice and to being able to help, hurts so much.

    • Thanks for reading and for your comment. Yes, I am so hoping to be on the mend now! Sometimes summer feels like a transition. I’m so sorry that your husband was away from home with a kidney stone! Now that I’ve had one, I cannot imagine being away and dealing with that. That’s frightening.

      • Getting that phone call was one of the hardest things, I know it’s ‘normal, everyday’ occurrence, but I just couldn’t function til it was over.

      • Well, it’s not really normal or everyday in YOUR normal or daily life! Kidneys aren’t actually supposed to “produce” stones. They can leave scars. My kidney was on its way to failing when I finally went to the ER. And, due to the composition of the stone, I can’t eat 8 specific foods going into the future now because stones are so hard on the kidney and surrounding tissue. So, yeah…I can totally understand your feelings and perhaps sense of helplessness. Did you ever find out from the treating physician what caused his stone? That can make a difference, I am learning, as to whether or not he ever gets one again.

      • I think I may have mis wrote my reply. No, thankfully it’s not normal in my life – and hopefully not in yours either – I just meant that as something that happens to lots of people, everyday.
        Hubby’s was caused by a build up of sodium, I think, and went on a trial medication to stop it recurring which seems to have worked. No real dietary changes were recommended. I hope you can sort through yours, that would be really hard to have to change so much.

      • I’m so glad he hasn’t had any more! That’s very good news! Yes…high oxalate foods. The things you learn. I grow rhubarb in my backyard, too, and it is apparently one of the highest vegetables/fruits oxalic acid producers. That’s why its leaves are poisonous–high oxalic acid content. I learned that yesterday when trying to figure out this diet change.

  2. I’m looking at my decaf right now…and thinking off the chocolate in my “treat” drawer…cutbacks are in the works, starting today!
    Oh the stent – cringe, cringe, CRINGE! I’m so so so sorry that happened. Dreadful! I feel everything, too, I found out last summer…
    And again, that was not embarrassing 😉

    • Well, you’re nice to me. I’m still embarrassed. I think maybe because I don’t remember it very well. And, I did research on the high oxalate foods and found that there are really only 8 forbidden ones. Chocolate happens to be one of them. ::pout:: No more Nutella toast on those cold, wintry mornings. ::trout pout::

  3. Even with everything else you do, I’m glad you’re taking care of yourself by seeing the doctors and taking the meds.
    Have you considered carob chocolate as a substitute? Not sure if it doesn’t have that stuff in it, but might be worth a look….

    • I may be forced to look at carob as much as it pains me. LE sigh…I was fortunate to find a list with the 8 Foods To Avoid, and coffee was NOT on the list. I am immensely pleased! 🙂

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