Tuesday, March 20, 2012
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.
Tuesday, February 7, 2012
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) :)
Sunday, February 5, 2012
Saturday, January 21, 2012
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.)
Monday, December 26, 2011
Monday, November 23, 2009
I am a delinquent blogger. It’s not that I don’t have the call to write, it’s that I haven’t felt like I have anything worthy of posting. All the time I have spent trying to think of the perfect post has kept me from writing what’s really on my mind. Sadly, my long-awaited debut was inspired by a mainstream teen movie. Guh.
I went to see New Moon the other day. A matinee with lots of other women my age sitting alone. The peace of only having to listen to my own thoughts was overwhelming. The joy of being alone doing something enjoyable carried me for so many days I’m even considering going again.
We have been in Tualatin for almost a year. Although our whole family is much, much happier here, almost six months of unemployment has definitely taken its toll. I am not cut out to be a full-time mom. Trying to keep a toddler entertained, enriched, and healthfully fed has come close to consuming me. As I write this I am waiting to hear about a potential job offer, and trying to figure out how I’m going to climb out of this hole and become a person again. She’s still in there; I know because I heard her while alone with thoughts of vampires and humans.
Years ago, I was introduced to vampires and werewolves and all other sorts of fairy-tale creatures. As much as my adult influences would try to stop it, I got closer and closer until I could touch them, these creatures from make-believe. They’re real. As real as you or I or anyone we know. The problem is, how to merge the outside pretend-real with what I know to be real? Who gets in on the secret? How do I find the others?
Sometimes I think I see one in the eyes of someone I’ve seen at both Portland PRIDE and the Portland Aids Walk. I toy with the idea that if I join this club or that I might find someone who wants to be in the same coven. The rest of my creatures are scattered about the country, centered in the Midwest, or buried in the earth. I have met new friends here, but it’s not the same. As I get older they seem harder to find.
I know we’re in the right place, and are lucky to have a few old friends nearby, but is there any place in the world that will feel like living in Urbana in 2002? I’m content for now, but still look to a future where many of us can gather close, circle the fire, and commune.