Space Mumps

So I've been meaning to write a good post sooner or later, but things are a little strange around here in my head. I also have about no energy and anywhere from 5-10/10 pain at any given time.
I've heard from 4 doctors, with varying types of sentiment, that I NEED to be tested for multiple sclerosis. NOW.
There was a urology test thing that I had to wait >8 weeks for that finally rolled around.  I failed miserably. I swear I could see steam coming out of the Urologist's eyes when he saw I had been living with a failing bladder and had not seen a Neurologist yet. He called my new PCP. (Dropped the old one because they were useless and put me on a medication combination that almost killed me. I have to start listening to my instincts if I'm going to survive this because I knew I had learned that  Drug A + Drug  B = seizures or worse. Although, that was years ago, and I thought maybe newer research had proven otherwise.)
I was then called immediately with a "red flag" on my chart and got in to see the new PCP, who seems incredible, and told me she had never had a urologist call her and she was very glad that he did. She came up with a plan to manage pain and keep me active until my upcoming appointments decide my fate. Unfortunately, the plan isn't really working and she is on vacation this week. It's not her fault; we really thought I'd be back in PT by now and I'm not. 
We've learned a few things.
Longitude and I noticed we weren't able to even say "multiple sclerosis" or even "MS". We aren't going to unless I have an official diagnosis. If we refer to it in speculation we named it "Space Mumps" (Red Dwarf fans out there? Anyone?)
Now that it's been several days, I realize that unless I limit my activity to practically nothing I'm in terrible pain. The medication helps sporadically, and it might be fairly effective if I took it round-the-clock but then I would be going through it at an alarming rate. I've never been on this much pain medication for more than a few days. I called the MD last Friday to see if this is safe, and if so, would they refill it that quickly? I also called yesterday and today and have gotten nurses to call back, but no actual answer.
So, I have been limiting my activity and medication intake but at a certain point I just can't take it anymore!
So, I then do something ridiculously stupid like make dinner or bathe my child and I pay for it for hours afterwards. The pain gets so bad I can't turn on the TV for distraction, the sound of my daughter's voice makes my blood boil, even if she's laughing. It takes every ounce of my energy to be "nice mommy" when she comes in my room and then Daddy or Grandpa can tell when time is up and she needs to be taken to another room.
I am endlessly grateful for the help that I have right now, and I feel like I am so close to the end of the marathon (a diagnosis). 
I don't have the assertiveness skills to get my point across to the person on the other end of the phone that I need help NOW. 
I HATE going to the ER for pain relief. They are generally nice but it takes hours and I feel like a drug-seeking criminal. A lot of this comes from working as a nurse in the ER and we would say "why can't this patient's primary just control her pain so we don't have to waste our time on something this stupid"? or worse: "this patient is surely just here seeking drugs; she's been here 10 times in the last 3 months".
(I've looked; the majority of those visits were me being concerned about urinary retention and I have only come specifically for pain medication and/or imaging twice. One visit was labeled "suicidal ideation" because Mike found me on my bed crying hysterically because the pain was so bad I had terrible thoughts that I could not get rid of. And a plan. And I knew that if it was that bad, I needed help.)




I decided to open up about all this to my friends and family via email updates because from my experience, when someone I know is sick or going through a bad time, I want to know how they are doing. Even the worst of it. Not for any other reason but because I care about them. Also, I want to know how I can help, even if it's just sending an email back saying, "that sucks, I'm sorry". I have had family members/friends/acquaintances handle things completely differently. Suffering in silence? Perhaps. Maybe actually not doing too bad considering the circumstances? But how does anyone know? And if that's the way the want it, I try my best to respect that. Most of the people I'm referring to have died. I do remember them as happy and vibrant, but Jeff, I also wish I knew how you really handled the worst. Did we help you? Were we there for you when you couldn't ask us to be? Did we give you space when you needed it? I hope so. Sometimes I stand at your grave and ask the wind.


I am not going to die. Even worst-case scenario is pretty darn good considering what some of my young friends have gone through. It's a common, well-researched disease with lots of treatment options. I've chosen to be open about how I'm doing and what's going on not because I want sympathy or praise or damnation, but because I know people care. Then can choose to read or not read my emails, they can ask me to take them off the list or just send me to spam. But this way, we all have a choice, and I hope you can respect mine. I'll keep you posted.

ALC (or, On Happiness, Revisited)

In the old blogging days, I would spend days and nights on end working on posts in my head consciously and otherwise until I knew the would come out just right. For an example: This Post about Happiness. I haven't done any of that, the thinking, that is, but it is my usual writing time, 4am, so here we go.


I miss Portland with all my heart sometimes. We have a magnet in the shape of the state of Oregon with a green heart in the middle. The company calls it, "I left my heart in Oregon". Weep. I spoke to a friend whom I've known since 3rd grade, who is currently a Portland resident along with her amazing fiance whom I've also had a long history with. She spoke the exact words I needed to hear. "This is just one of your homes. When you visit, it will just be coming home for awhile."
She would know, if anyone. She has had so many homes I'm not even sure she could count them, but Antarctica is included.


When I think of the core of our friendship I am transported back to an evening to early morning on a beach in the Bahamas, age 14?, 15?. We were so entranced by the waves, the darkness, the ships far in the distance, and that we were HERE! (Believe it or not, part of a Marching Band trip. How awesome is that?)


So I'm not sure I can remember a word of what we talked about, but the feeling comes back in an instant, in the quiet of the morning at times. Complete peace. Nirvana, if you'll allow me. I'm sure I have pictures of me with my entire head braided by a local woman who carried hair products on the beach, but I don't need them because the memory is so strong. We already loved each other, and had for a long time, but if anyone else would have been there the magic would have disappeared. Our friendship was cemented, again, as if that were necessary.


A few years later, a church trip to Paris. Heaven. We were partnered to stay in hotel rooms and host families and every night, exhaustion heavy on our eyelids, she would coax me to journal, just a bit. I can't thank her enough. I have half of a scrapbook from the trip that I can't finish because nothing would do it justice. I wouldn't have even been there, one of the most formative and amazing experiences of my life if it weren't for her. Kids with single Moms just don't sign up for trips that cost thousands of dollars, but she knew I could do it and with hard work and fundraising, I did.


Even though we had these unbelievable times away from home, I also think mostly of times at the house in Glenshire. Her parents never objected to me coming over, sometimes for more than one night, and her mom would stock the pantry with things she noticed I enjoyed. Her dad is one of those obnoxious morning people who sing (!) and throw pair after pair of rolled up tube socks to get us up just in time for school, usually just a few hours after we went to bed. Of course we moaned and complained, but that is a fond memory to this day. (We often slept together in a twin bed. How we managed that I can't imagine. Skinny teenagers, who I'm sure thought they were overweight at the time.) Often I had a paper due the next day or day after and her family would let me stay up all hours of the night, typing and fretting. I don't remember a single time when this friend went to bed before I finished, and her encouragement was (and still is) neverending.


Recently, I spent an entire day crying (Super Bowl Sunday). When I say an entire day, I'm not exaggerating. I'm always terrified of letting go because I'm afraid I'll never stop. I put on Angels in America to distract me from my physical therapy workout and just lost it. I'm sure she could barely understand me on the phone but even though I have been a horribly delinquent friend, (we're talking 6+ months) it didn't matter. I am a part of her family as much as they are of mine. Nothing can change that. Certainly not distance or time.

That's the way it's always been. We were inseparable at one time, for many years. We were the exact same height for a few years and although we don't look much alike, people called us by each others' name or just said "the twins". I was never offended when someone was blushing and apologizing profusely for calling me by her name. I honestly was heartbroken when I grew just a few inches while she stayed the same height.


I revered her and still do. She is the bravest person I know, spending literally years of her life moving from place to place, foreign countries included, to work a job with all new people. She makes friends instantly because it's impossible not to love her.
Right now she's planning a long-distance wedding which of course poses the problem of coordinating bachlorette party, shower, etc. because there's only so many places she can be at once. But when I think about it, she has friends all over the world. There is not a single place that could accommodate everyone. Unfortunately, we probably won't be having one of her showers in New Zealand, for example. Even her parents don't live exactly in her childhood hometown. But somehow, she goes on. Home is where she is right then.
For me, home is where she is right then, too. Even after all these years. I wrote This Post about another friend, who is still light-years away in Vermont.








The theme of this blog was meant to be essentially: Should I stay or should I go? And I feel I've come full circle, moving back to the motherland, but that doesn't change a thing. We chose "go", but might not ever have all of our closest friends nearby. I'm trying to be okay with that, but I think I'm going to have to hear a lot more wise words from the amazing ALC. (Soon to be ALB) :)

The Post After this is Sentimental and Nice. Really.

Now that “The Holidays” are over I can finally say it. Fuck Baby Jesus. My womb has felt gut-wrenchingly empty for about 34 weeks or so. I’ve been reading about other women who got pregnant over the summer at almost the same time as me on a chat room-type website that I used when I was pregnant with Ava. Why do I torture myself by doing that? It’s the only way I know it was real.

This morning I tried to log back in and it wouldn’t let me. Then I re signed up just so I could say hi to some of the women who are still trying to conceive after all this time or the ones that are about the same gestation as I would have been. Even still, the stupid website must have been down or just knew letting me in was a bad idea. Can’t post or blog on my profile without logging in.

I got rid of the positive pregnancy tests almost the moment the blood stopped flowing. I woke up early on the day of my daughter’s 3rd birthday miscarrying. Now, the due date looms just about a month away. It was a totally unplanned pregnancy. I had gotten Mirena just a few months before (99.9% protection for up to 5 years!). Right. The damn thing fell out. I went back to the doctor right before we left Oregon and swore something had to be wrong with it but he blew me off. Unfortunately, there’s nothing like getting pregnant that makes a woman wish she were having another baby.

Last time I lost a pregnancy, it was early on and we conceieved Ava 3-4 months later. (Hence, getting pregnant (accidentally) taught us we were ready. When the due date (which coincidentally was March as well) of the lost pregnancy came around, I remember just being frustrated. “I WOULD BE DONE BY NOW if that first one had stuck!” It’s hard to grieve the loss of a pregnancy when you can’t even see your shoes, round with a daughter who reminds you she’s okay with constant nudges.

The OB/GYN I saw a few weeks after my 2^nd miscarriage was so optimistic. I told him all the complications I had with my last pregnancy and he promised me that there were so many more options that just weren’t available or studied even just that many years ago and getting me through a pregnancy wouldn’t necessarily be easy, but possible. That kept me going for months. The possibility.

As an update to an earlier post, I am now doing self-catheterization (not nearly as bad as it sounds) when I need to so I’m not dragging a bag around. I really didn’t know how annoying it was until it was gone. I’m also awaiting some tests and hopefully explanation as to why I can’t pee. One explanation could come from an Ortho doctor who ordered an mri of my spine. Said doctor spent way too long looking at what he could see of my spine going back and forth on one frame from my hip mri whispering “right there”. I’m thinking “the possibility” is probably forever gone. Ava likely will never have a biological sibling and it doesn’t help that she asks all the time where are her brother and sister.

The Secret to Happiness

We have taken the plunge, moved back to Illinois, and of course have mixed feelings. So many posts, so little time.

Right now I have a catheter. (Me, Latitude, the wife & mom)  And at one point a friend asked if it was miserable, and I said for some reason I’m remarkably calm about the whole thing. She then suggested that perhaps a urinary catheter is the secret to happiness. As we explained to my now 3.5 year old daughter, a straw goes in my “butt” to get my pee out because I tried and tried and could not get my pee to come out.

Clearly the next few million blog posts are not going to be chronological because telling a story in the right order is overrated, right?

Anyway, I have been suffering from urinary retention since around Halloween. The doctors had several ideas as to the cause but at this point all those possible causes have been healed/removed so I have no idea why I can’t pee. Also, when someone says “suffering” from urinary retention, they mean it.

(Confidential to any family members, especially male: read at your own risk. TMI approaching. Or, we might already be there. Just remember-things can’t be unread.)

(Female family members and IRL friends: you’re probably okay, unless blood and/or medical issues make you squeamish.  Don’t say I didn’t warn you.)

I’m even giving you space to think about it…

Blood…

Pee…

Tubing…

Ready? Okay.

For the past three months, I have been literally forcing my pee out. I actually told one of the doctors that I feel like I have to push harder than when I had my baby (2.5hours of pushing and more than one doctor saying there was no way she would fit through my pelvis.)

First I feel the normal need to empty my bladder. Then basically, I would sit on the loo and wait. Wait. Wait. Strain just a little to see if a stream would start. Then strain harder and get a few drops. Then spend the next 10 minutes straining with all my might, drop by drop, taking breaks to catch my breath, until I felt like I had at least gotten enough out to relieve the feeling of having to go. (My “stream”: picture squeezing a citrus fruit without seeds, luckily.)

10-40 minutes later, repeat.

Some days, I was almost normal, but between October to the present this problem was gradually worsened; I mentioned it to every doctor, but all my other random issues could have explained it.

At one point I was blaming it on the height of the toilets in our house! Denial? Perhaps.

I have pain with this, sometimes debilitating. We think at this point it’s probably my right kidney. I can’t count how many times I’ve been to the ER during normal business hours because healthcare in America is so awesome. There’s so much more to this story but here’s the best part:

So a few days ago I thought I was developing a yeast infection from the antibiotics I was on for a UTI that I probably never even had. I have never had a yeast infection confirmed, and I the one I once treated as such turned out to be an unfortunate allergy to a silicone-based lube. Those of you who know me realize I have taken antibiotics before. Once or twice. Or “a jillion” as my mom would say. I am clearly NOT prone to yeast infections, unless I am breastfeeding an infant, apparently, and the yeast obviously grows far, far away from the area I’m currently concerned about. I call Longitude and ask him to go to Walgreen’s for the billionth time and he gets me the top-of-the-line one-day treatment because he’s amazing. (I knew I could not endure more than one day of anything leaking out of me AND a hose coming out of a similar area…more on that later.) Two days later, itching/burning is worse, but I notice that I have no unusual goop and the itching doesn’t go very far, um, let’s just say up.

So I call my PCP (Primary Care Provider, the BS term for regular doc) and say that the OTC treatment did nothing and to have the RN call me back because I probably need the strong prescription stuff. (None of this is making sense to me…usually only women who have had to treat multiple yeast infections over time need the Rx but whatever.)

I jump (as quickly as one can jump with a tube hanging out of their crotch) in the shower, switch legs for the tube because the left leg seems irritated. I SEE A HIVE THE SHAPE OF A TINY SNAKE. Exactly the shape of where the catheter was. I could even see the Y-shape at the end. A red, itchy, raised, hive the shape of a catheter DESIGNED TO PREVENT ALLERGIES! (It says clearly in black ink: made of 100% silicone.) I sure wish I had paid more attention to the fact that there is only one lube we ever buy because we know it won’t hurt me.

Okay, no this is the BESTEST part:

Urology does not return a call for 5 hours. I call them back and they say that since I haven’t had my initial appointment they cannot give me any advice about hives in my crotch. Could they not have just told me that when I called freaking out at 10am? So, I go to the ER to GET A CATHETER CHANGED. What a waste of resources…I can’t even talk about how stupid this is. Fortunately the RNs and MD are awesome and quickly get me into a lovely latex catheter that was SENT DOWN FROM UROLOGY.

I swear, if my life were on TV, it would be one of those ridiculous shows that adds any possible plot twist imaginable but it’s all so unbelievable it gets cancelled after 6 episodes.

I’m considering renaming this blog: You Just Can’t Make This S*@T Up!

Oh, and during this I have a disabled father-in-law going in for major surgery, a preschooler having her VERY FIRST experience with diarrhea, and, of course, my period starts unexpectedly with the heaviest flow I’ve had since my most recent miscarriage.

Things this experience has taught me:

-       any fluid, even blood, loves to follow the outside of tubing.

-       There is no way to keep yourself clean during a heavy flow with a catheter inside you.

-       Don’t EVER, I mean EVER try to use a tampon and catheter at the same time.

The only other thing I will say is I ended up getting the soft-ish waterproof towel thingy we used to put in the car in case the dog puked and had it on my bed. The end. Oh, and OxiClean works very well on bloodstains. The end end.