They can’t tell you what’s wrong with you

But they make a guess anyway.

 

Steroids. It’s steroids. The pain. The nausea. Everything is related to steroids. Funny, they always say that. I’m sorry but I really really disagree. The pain is localized. Last time I told a doc I was in terrible pain, it turned out that *wow* I had herniated 3 discs in my back.

It isn’t anything detectable in a blood test, so that’s kindasorta good news. At least I think so.

I got 11 prescriptions for $58 too. That was worth the visit as they usually cost about 3x that when I get them in the mail.

They are scheduling an appointment next month for me to see the Pain Management group. I’m assuming that they also try to find the cause of the pain, and if they don’t know, how to manage what you’ve got. I’ll try anything. My muscles feel like they are on fire – mostly shoulder and neck pain. It’s like whiplash.

The docs didn’t seem too concerned about:

The fevers
The painful lymph-nodes (said they weren’t swollen – uh, yeah. they are)
The nausea
The fainting (once)
The muscle cramps
The fingers freezing up and “sticking”
The night sweats
The chills
The vein that has become very prominent and spread across my chest
The difficulty in swallowing
The coughing at night and when I eat
The weird way I think I smell (Zoe says, “Like a robot.”)

I guess they see so many really really sick people that because I “look great” that I must feel great. I wish I looked as bad as I feel and then maybe someone would really do something.

20061214_pain.jpg

or

funny-pictures-sad-cat-blackandwhite.jpg

 

I don’t want to take pain meds, but since I haven’t for about 4 days now, I’m going to get my drug on like Donkey Kong tonight.

I won’t have internet access in New Braunfels, so I’ll be away at least until after Sunday.

Ok. Need to pack it all into my car. Thanks for the snappy answers to stoopid questions.

I can do this. I don’t know why but I just can.

Your assignment is to find someplace to go swimming and GO. It’s just too damn hot to do anything else!

Tim, I love you more than I love sushi. And Sixbucks. More than sushi with a Sixbucks.

For My Enginerds

“Must be nice to not have to work.”

Ok, I’m going to go off for a bit here and I might have to curse a little bit.

 

I hate when people say that to me. “Must be nice not to have to work” or “Why aren’t you working yet?”

Look, motherfucker. I didn’t win the lottery so yeah, I do *have* to work. But since I still feel like hammered dogshit most every day, I’m not working yet. I collect disability now and I don’t feel bad about it. Honestly, I think I kindasorta earned it.

Also, because when you work in an office, assholes come to work with 105 fevers because it’s better to be there than call in sick – or at least they think so. A 105 fever would put me down.

And gross, sick fucking people pick their noses, sneeze, snot rocket, don’t wash their hands and then touch things I might touch. Did you know that you have strep germs in your nose? A strep infection KILLED a friend of mine in 3 days. Staph could kill me. Pneumonia could kill me. Heck, a bad cold could kill me. Viruses, germs, fungal infections – no bueno. Welcome to my world of OCD-ness. It’s self preservation. It’s called immunosupressants. And if that makes me a freak of nature, so be it. I’m still fucking here!

I wish you could spend one day in my shoes to feel the pain that I’m feeling. Or the waves of nausea I get when I take all my meds every day. Or the inability to sleep because of pain, neuropathy, or just whathefuckever reason I can’t sleep. Or feel so tired that you sleep nearly all day and all night. The fear of relapse – I’m not even going to think about it, but it lurks in my brain.

I am fortunate that I was able to move in with my parents AT AGE 39 because I couldn’t afford to live on my own again, which I had been doing for OVER 20 YEARS when I got sick.

But you know what? I’m here. I’m still here.

I never say any of the stuff I’m thinking. I wish I had some cute, funny answer for those questions, but I don’t. I just can’t explain it all because I’m tired of talking about it. It makes me feel like I’m speaking whinese.

Mostly. The biggest thing. Is that I would trade it all back in .00025 seconds if I could. I’d go back to my boring job reading about toxic waste in a heartbeat if I could. Just to not have to go through what I did; to not have had to put my loved ones through all of this. My daughter was really tired the other night and was crying. She said she wishes we could go back to our old apartment and have things be the way they used to be. Try being strong through that.

I’m not working. It is what it is. I deal with it. I don’t like it, but it’s not like I really have much choice.

Ok. I have to go to the docs now. I don’t want to, but again. No choice.

I can do this. I have you.

For my enginerds. This was funneh!

engineer.jpg

Your assignment today is to tell me the clever answers I should give to these annoying questions.

P.S. I love you Goobertox!

Tense

Went out to dinner with friends tonight. It was great seeing them. I’m pretty nervous about tomorrow’s appointments.

Took some pictures in the car.

 

Mean face:
gno mean face.jpg

Non-mean face:
gno july.jpg

I want to know what’s wrong with me. My neck hurts like a mofo. I even bought this dorky neck massager that you wear around your neck. It’s not helping although the heat feels good. I miss Tim. Just the feeling of Tim’s hand on my neck made it feel better.

I’m craving fruit.

I don’t feel like writing tonight.

Yes, my loves, I really am great-ful

It must be get all sentimental review the archives week here in Debu_ville.

 

There are many lessons I learned these past five years I’ve been blogging. Yes, five plus years – started on March 30, 2003. But lately I seem to be falling back into some old patterns, and quite honestly, that is not ok.

It started with an email I sent today that reminded me of that post and about the lesson of being grateful and God’s grace:

You are awesome. You have great things in store for you in your life. Storms and sunny weather, but I know your strength. I know your character and integrity and I know that the clouds will eventually lift. I know your love for me.

I know that often I forget to be grateful for what I have. It’s so hard to remember God’s Grace on me when I am so down or feeling so much pain. But then you get a glimpse of God’s love – in your daughter’s snuggles, the smell of Zoe’s hair and her little hand in mine when she sleeps, a funny joke or a good time with a friend, your other daughter’s smile and bright future, a good blog post or a good day’s work. Sometimes they are few and far between, but God sends you what you need, or who you need, when you need them.

 

It’s uncanny, but there are at least ten or more people I know I could have sent that email to.

I think I could have written this just last week, yet I wrote it over two years ago; about a month after my transplant.

I’ve been wallowing. I’ve been focused on how crappy I have been feeling and the long road ahead of me. I’ve been sad and let that sadness overwhelm me. I am letting the pain and sleeplessness and frustration impede my goals.

 

This week I just pray that the doctors don’t tell me what I’ve been fearing – that I possibly have relapsed or have lymphoma or some other type of secondary cancer. I’m ready to finish what I started. Recovering, feeling better, spending time with Zoe, searching for inner peace, volunteering, writing, and trying to figure out which direction God wants me to go.

Worrying does not help anything. But praying for guidance does. It’s not like God just sends you an email or you hear some booming voice that tells you, “Debu, go be a teacher.” But in my experience it’s more of God opening doors for you or putting people or experiences in your life that will lead you in a certain direction. It’s more of some calm and resolve about what types of things you need to accomplish. The ability to have some clarity and to make a list, to set goals, and to see what things in your life you should cherish. And the people in your life you should cherish.

I remembered that last night when I got to see Zoe after being apart all summer. Her sleepy body curled up against mine. Feeling her soft little breaths on my arm. Waking up with my niece and nephew and their smiles and energy and hugs. Hearing Tim’s voice on the phone and hearing his laugh. And reading the many comments from so many cherished readers and family and friends from that difficult time in my life. I am so grateful for it all. For you all. For my life and my loves and my future.

I don’t want to worry about my health. I just pray that I am allowed to continue on. I pray for faith that this isn’t all there is to my story.

I can do this. Something great is going to happen.

Your assignment today is to read or re-read that post and the comments and to complete that assignment from those few years ago.

1:20 a to the m

Sleep eludes me.

 

As if this is something new.

My bird-talker is as sun-tanned as she can be. She was a swimmin’, Summer fool. I gave her the longest hugs and smooches when I finally got to her (I showed up earlier than expected to surprise her). Too sweet for words. Um, and I need to take pics – she’s HUGE! And gorgeous. Got her hair cut and she looks so grown up to me.

We are snug as a bug here at Sis #1′s house, as well it should be. Spent the day with awesome Sis #2 and her three kiddos. Zoe was in Heaven! Sis #2′s kids could not be any more adorable. They look like Disney babies. Sis #1′s two kiddos are gorgeous too… although they wake up at the crack of ass, which is why I wish I could sleep tonight.

Zoe asked me all about my summer. I told her about my brief visit to Canada (2 minutes), Montana (20 minutes) and driving through Washington and Idaho – seeing mountains and lakes and rivers and gorgeous greenery and flowers. There were so many places we saw that I wish she could have seen with us. I think I could write about it for weeks on end (as of today my NYC weekend adventures – including the Mark Wahlberg story – have still not be finished, though mostly written). I think I was too busy enjoying my precious time with Tim and soaking in the beauty that is Washington to want to spend hours online writing.

I hope that Tim can help me fill in the brain lapse that I get sometime; either it’s chemo brain, being 40-something, or remnants of my bout with encephalitis. There were so many cool things that we did. I took notes, but not enough. It’s like how I don’t like to spend that much time taking photos at events and sightseeing. I’d rather enjoy the view and buy postcards as those photographers are much better at capturing what I see than I am.

I think I was too busy enjoying my visit to think about writing it all down. But I miss my real blogging. I read some archives and I remember how much writing it all down meant to me. I felt more clarity in my life than I do now even when I was going through all the treatment and recovery. It was more gutsy, real writing than anything I’ve done in a long while. I know I need to practice my craft again (because, yeah, grammar goofs and all, I actually have a B.S. in Humanities – in English Writing & Composition – Go Saint Edward’s University!)

I still be skeered about my appointments. I am having a bad feeling for some reason and I just wish it would go away. Too bad I’m out of ativan. It is my temporary Eternal Sunshine of the Spotless Mind wonder drug. I’m hoping my docs won’t object to a refill.

Ok. Going to count backwards from 100. Generally it takes me about 7 to 8 times of doing that before I fall asleep. Sucketh.

I can do this. Zoe the Incredible is here.

Your assignment today is to tell me a joke. Preferably a groaner. Tim is the best at these. I want to think about them all when I can’t sleep. Please send your many friends this way to leave me jokes as well. Obviously I have a hard time with my sleeps, peeps and I dig the commentage. Gracias. Or as ZoeElvis would say thankyouthankyouverymuch.

Home Safe

After a thoroughly hork-o-riffic, turbulent flight home from Seattle, I made it safely here Friday. I’m headed to Houston today to see my bird-talker and to visit my transplant doctor on Wednesday. I wish I didn’t have to go to MD Anderson because we are going on this fun trip for a week in New Braunfels with Sis #1 and everyone else is leaving on Tuesday. Zoe will have to go without me and I pray that I’m ok and won’t have to be admitted to the Big House or have to stay extra days for tests or something.

Missing Tim and Seattle like bonkers.

Trying to focus on positive things. I still have this awful neck/lymphnode pain. I snoozed like Sleeping Beauty about 5 or 6 extra hours yesterday. Woke up, honey nut cheerio’d up and then went back to sleep until about 3pm. I’d probably still be sleeping, but I want to get on the road and my neighbor’s dogs barked like madmen at about 5:30. On a SUNDAY. *sigh* Thanks.

Last night I went in to get some water and got a great warm Texas welcome from:

 

perched on the kitchen sink, a solitary giant Texas cockroach.

GiantCockroach.jpg

La cucaracha
You are so damn disgusting
My flip flop killed you

Did I say I’m missing my Tim like bonkers?

I can do this. I am the killer of giant, disgusting bugs.

Your assignment today is to send me some well wishes and good health reports. No lie. I’m kindasortalotsascared.

Coffee and Chuckles

All is well in Seattle.

 

All is well with Tim and me.
He is truly my adorkable soulmate.
A few heartfelt emails.
A lot of talking.
Quite a bit of kissing.

All I know is that the end result is that *we* can do this.

Sometimes when the clouds seem like they will never go away, knowing that someone else is here for you to understand and still love you is enough. Through sunny days and storms. And whipped cream. And coffee.

I was going to link to my post, Love Big or Go Home, but then I started reading from my archive of December 2005. A month of life lessons. A good month if you are feeling blue and need a priority check, in my opinion.

I fly home tomorrow. So my time today is going to be enjoying my days with my debu_sweetie.

This made my laugh. From my Sis in Law #1 – “If my love for you were nickels and dimes,” a guy I dated in college once told me, “you would be able to buy a mound of cocaine the size of Greenland.”

George

Mildred, the church gossip, and self-appointed monitor of the church’s morals, kept sticking her nose in to other people’s business. Several members did not approve of her extra-curricular activities, but feared her enough to maintain their silence.

She made a mistake, however, when she accused George, a new member, of being an alcoholic after she saw his old pickup parked in front of the towns only bar one afternoon. She emphatically told George (and several others) that everyone seeing it there would know what he was doing.

George, a man of few words, stared at her for a moment and just turned and walked away. He didn’t explain, defend, or deny … He said nothing.

That evening, George quietly parked his pickup in front of Mildred’s house, walked home. and left it there all night.

 

Worst. Birthday. Ever.

You know your birthday is for crap when you get a call at 4:30am and it was because your ex-husband’s telephone accidentally redialed …. twice.

That was the highlight of my day.

I go to MD Anderson (that call clocked in at 6:30am yesterday) on July 30th. I’m broken. I need a’fixin. And a brain transplant. I hope I don’t get admitted because I am too exhausted to go inpatient in the Big House.

Tim and I broke up. My fault. I’m so not surprised.

I need Zoe. And someone to come help me pack. I can barely move.

I can do this. Regardless.

(comments are shut off on this one, btw. They are jacked up and have been needing moderation.)

Hey!

It’s my 41st birthday, but because I now have a transplant birthday (this year I was 2 years) I will forever subtract one from another and I’ll always be 39 – woo!

I can do this! I’m still here.

Birthday BBQ

We had our birthday BBQ this afternoon. What FUN!! It was kind of neat to throw a party since I don’t really have my own place anymore to host one.

Tim’s family came out. They are just so cool and fun. I know it’s kind of uncomfortable to meet the “new” girlfriend (not the first time, but you know what I mean) but they always make me feel very welcome. Tim has the cutest nephew, Ayden, age 2. He’s so adorable I just wanted to squeeze him. Tim’s best friend brought his wife and their gaggle of kids as well. It was great to be around all the chirrins. Makes me miss my Zoester big time, but I know I’ll be seeing her in a week.

Tim gave me this cute pink t-shirt from the Kitsap Bluejackets. That’s the team he umpired twice. I had such a great time at the games. He had the entire team sign it for me. It’s so awesome!!

Zoe’s been having a great time, but every summer, towards the end of her visit, she starts to get sad. I think it’s a combination of knowing she will be leaving her dad and his family and missing me. She always makes me sing our bedtime songs to her and she tells me over and over that she misses me so much. It’s terribly hard to sing to her without wanting to bawl my head off. But I know she adores her dad and has such a great summer in NY (upstate). I just can’t wait to see her. She said she’s ready to come home and see her cousins. I hope that I feel ok and that I can spend some time with Sis #2 and her family since they aren’t going with us to New Braunfels. We’re headed there with Sis #1 and her family when Zoe gets back for a week-long trip with about 13 other families. It’s now an annual thing and it’s just fun as heck!

I’m not sure what they are going to do at MD Anderson. I mostly just hope they don’t blow me off and tell me it’s just a medication issue or GVH and to deal with it. The pain is often just completely unbearable. Generally I manage through it during the day, but I’ve had to basically dope myself up to get to sleep. Usually it’s some combination of ativan, vicodin, sleeping pills or darvon. BTW, I know which ones not to mix together, but there are times where I wake up just completely lethargic. This is absolutely unacceptable. I can’t go through my life doped up.

Ok. I smell like an Elk. Or maybe a robot (as Zoe used to say) so I’m off to shower. I bet I will be posting more once I get home, so no worries. I am having a great time, so I’d rather not spend all of it online.

I can do this. Today was a great great day.

Your assignment today is to tell me about one of your favorite birthday memories.