debutaunt.com

Hawktober

Yuck. It's October and the stores are all vomiting pink again. The awesome Jeanne at Assertive Patient has made up a bunch of stickers. I wonder if they would arrest you if you posted these stickers on the pink displays of doo dads. She's also having a 2nd annual contest for How Low Will Komen Go? So submit your entries if you see or know of something "pink" that horrifies you. (e.g. last year's winner Jingle Juggs)

The stickers say:

BREAST CANCER: It's a disease,

www.assertivepatient.com

I started this new med for the fibromyalgia and it makes me wake up drunk off my butt. I'm not digging it, but my doc said to give it a few more days. It makes me feel horrible, but I hate it because I can't drive Zoe to school and my mom has to wake up early.

No test results back on the blood clot. I was having some breathing problems last night and felt like I was having hallucinations about riding in an ambulance and lizards crawling on my legs.

Not much else is going on other than lots of doctor's visits, watching tv and homework. Zoe is now one of the goalies for her team. I love to go to her practices and games because it's nice to visit with the other moms.

One of them gave me a website to help Zoester with her spelling words. She keeps getting 70's on her tests. The site lets you input the weekly spelling list and then you can test them, teach them or let the child play games with the words. It's really pretty cool.

I can do this. Zoe's home and it's time to check the homework for tonight.

I don't have any assignments, but I'm feeling kind of lonely. Call a friend. They might need to hear from you.

Does Not Equate

Fibromyalgia + possible blood clot in neck/chest = latest guess at diagnosis.

Although I just love to hear from the receptionist that, "Fibromyalgia is the bullshit diagnosis that they give you when they don't know what the hell is wrong with you."

Although within a few minutes on the Googlizzle, I found there are links between low magnesium (which I have a constant state of) and the Frogomyalgia.

The endoscopy biopsies were all benign. Yay for little things. No graft vs. host there. But they think I may have some gut infection and have to have this really gross sounding test next week. Something about gastric evacuating. I don't even want to look it up.

Today they did a "doppler" ultrasound on my "armpins" neck and chest to look at the blood clots that showed up on my CAT scans last week. I asked the tech if she thought it looked ok, and she said she had to show it to the doctor. Afterwards, she said, well I can't say one way or another, but I think it's a good sign that after reviewing your ultrasound, he didn't check you immediately into the ER.

Who knows. I'm ready to get high, watch some TV and go to sleep. After I watch "JETMAN" on National Geographic channel.

I can do this. I'm going to have my gastric guts evacuated and further gross myself out.

Your assignment today is to tell me your funniest political joke you've heard so far. I don't care if it's PC or not, or liberal or conservative, I just want to laugh after these past two weeks.

Oh. Speaking of two weeks, I've actually lost 17 lbs in 2 weeks. Yay. Not.

Always for my baby

For Zoe and her new (old) found appreciation for the Beatles. We used to listen to them all the time when she was a baby. Now she likes the soundtrack to Across the Universe.

Sure Thing

I swear that hell is a never ending cycle of paperwork.

High Risk Pool Insurance Application - 32 pages. Confusing. No wonder people hire attorneys to help with all of this stuff.

MD Anderson lost my financial aid application for the third year in a row. I even hand delivered it this year in June before I went to Seattle. Now I have to re-do it. It originally took me two weeks to fill it out.

My sweet mom delivered a request to the Social Security office to make an exception for me to have a special application period to apply for Medicaid. There were affidavits in there written by Sis #1 (an attorney, btw) She also wrote up a great case (as I was giving mis-information that lead to a mistake in my enrollment). Instead of keeping my Medicare card when I got it (Jan), I returned it because the SS office told me that it would be ok to reapply when my Cobra insurance runs out (October 10). Apparently that's not the case. I can apply on Jan 1 for it to be effective July 1st. So what's up with that if I get sick? No insurance?

I'm trying not to stress, but it's clearly making me feel ill. I can barely stay awake when I take my meds, how on early am I supposed to stay up and fill all this crap out? I mean I can fall right asleep after finishing a 4 shot Sixbucks Iced Latte.

I think this week, I'm going to make it my job to get all this crap done quickly. I'm feeling so lousy and now I have weekly doctor's appointments. Some times 2-3 a week. I'm going to have more referrals to immunologists and rhumatologists. I also need a new endocrinologist. But since I'm about to lose my insurance, it would be dumb to start with one doctor and then have to switch because of stupid medical issues.

I know I'm now officially depressed. I'm still taking the meds they gave me, but it's getting so overwhelming. I think it's the constant pain and frustration of dealing with all these doctors. I have an appt with a psych doc on the 25th, although in the past all she wants to ask about is my stupid love life - or lack thereof.

I have to say, I miss Tim fiercely. We rarely talk and when we do, it's just "cordial." He has just completely lost any kind of romantic feelings. I mean not just for me, but he says he can't even imagine having any kind of relationship with anyone. He's so stressed, that he can't even remember what that was like before. It just feels so awful to not have him love me anymore. He was the most romantic, awesome boyfriend. So thoughtful and sweet and funny. It breaks my heart to know that he has lost a big part of who he is. To know that he doesn't think about me as I do him. I can barely bring myself to talk to him. I have friends and family here, but it's just not the same. I feel really alone even though I know I'm not.

I think back about how much fun we had. And how I used to not have pain all the time. That I enjoyed going outside and doing things. I love Tim and I love Seattle. I felt hopeful there. Perhaps it is just the heat here in San Antonio. I think I get the kind of depression during the summer like those up North get during the winter. Except we've had hot weather since February and it will surely last until October or November.

I can do this. I just wish my life were different right now. I'm glad to be alive, but I wish I weren't as miserable. I can't ever remember feeling this ... well sad... before. To feel so lonely and isolated. I can't even walk 12 feet without losing my breath. I can't bend over to pick stuff off the ground. I can barely sit up enough to get out of bed. And I can't get to sleep at night because of the pain. I feel 100 years old. I'm so sick of this being in my life. I know there are people way worse off than I am, but I hate feeling so awful. I hate that this is how my life is right now.

Can you take a vacation from your life? Like "Wondertwin Powers - ACTIVATE?"

Your assignment today is to go for a walk. A simple walk is unbearable to my right now. I want to live vicariously through others today. To encourage you to move. I get so much joy from watching my daughter play soccer. She played 3 quarters yesterday - two as goalie. She was AWESOME. I think she stopped about 6 goals. Never played goalie before. So much energy. It nearly made me cry that I can't be that anymore.

Ok. Enough whinese for now. Move it!

The scoper part 2

Yesterday I got up at the crack of ass to be at the clinic at 6:30. I had even confirmed the appointment the day before. So Dad drives me over and they have no record of it. I was super grouchy!

I then call the office and they rescheduled me for today at 7:30. I show up at the office and again, they have no record of an appointment for me. Turns out they have the wrong area code for my phone. She swore she tried to call me three times. But, thank goodness, they worked me in.

Looks like there is a possibility that I have graft-vs-host in my throat. He did 4 biopsies and I should get results in a few weeks.

Got other test results from MD Anderson yesterday. I have gvh of my skin, but not of my muscles. There is a possibility that I now have arthritis from some strange reaction of all the infections I had on my immune system. Lovely. Back on steroids. Bumped up to 16mg a day. Swollen face, here I come. So not cute.

Still in great amounts of pain and all I feel like doing is sleeping. In an ok mood, but am tired of feeling craptastic. It really gets me discouraged to not be able to move. I'm at the point where I can't roll over in bed because it hurts too much.

Zoe is doing great. Way too much homework though. It's hard to get it all done some days. But her little cousin is here and they are just cute as heck - like sisters!

I can do this. I need to eat, but can't swallow. Soup, here I come.

Your assignment today is to pray and send good vibes to the folks of Houston and the Gulf Coast. It is just a terrible mess.

I miss Seattle and my Seattle people!

The scoper

I have yet another endoscopy tomorrow. At 6:30 A. FREAKING M.

Not too freaked about the scope because I've had like 5 or so, but dread getting up that early!!!

I am not doing very well. I don't even want to talk about it because it's pretty boring to me. And I'm sure it's boring to you all as well.

I miss Houston, but am glad I'm not there rightaboutnow. It is really sad to see all the pictures. Many of my friends have damage to their homes, but at least they are safe. The power outages are just frightening.

I can do this. Just because I can.

I don't care who you are for, this was funneh!

My Houston Peeps

Sis #1 and Sis #2 both live in Houston. All their family members are safe and sound. Power out for both, and if on, it's kind of sketchy. There's no water pressure, but they have bottled water.

It was sad to see some of the images of Galveston and downtown Houston. A building that I used to work in had a bunch of windows blown out.

Waiting to hear on my H-girls, Meerkat, D1, Paige and Julie.

Hope everyone is safe. Check in if you can, por favor. Hope they restore power and water soon. But with nearly 2 million people without power... it may be a while.

This Day has Sucked

Dr. Appt in San Antonio with my transplant doc, Dr. B.

He seems to think that I need back on the steroids (16mg), another catscan of my neck and one of my chest, an endoscopy, two psychiatric visits, aracept, cell cept and a weekly follow up.

So glad my insurance runs out in a month and that my current insurer won't pay all of these events; so I'm going to have a major out of pocket expense for part of these.

If I don't accept his recommendations, I can a) move to Houston or b) find another doctor in SA (which he says there aren't any.) I'm sorry, but I just feel totally fucked.

Everything has been attributed to steroids for over two years now. I had this neck pain *while* on steroids. I've been off of them for over a month, and it's all the same. Dr. Q at MD Anderson said he would try a few other things before putting me back on steroids.

I just don't even want to talk about this anymore. Nearly 9 hours at the hospital. I am frustrated and defeated. He says I'm depressed. Probably. But I can tell you right now that I'm depressed from being in constant pain. The rest of my life has been fairly cool.

I can do this. Even though I feel near death.

Your assignment today is to pray or send good vibes to the people of the Gulf Coast. It's looking kind of eerie. I hope that our power doesn't go out because apparently we are going to get rain and winds.

Tim's now too busy to be my sweetie anymore (don't want to talk about it). But I do miss Seattle. I wish there was a way to figure out how to move there for good. I adore that part of the country. So does Zoester.

Is it Wednesday

Just when I think I can't be in any more pain.

I am.

I can barely walk. I'm miserable even with painkillers. Sleep is the only thing that makes it go away. I feel like my body is shutting down.

I hate this. I want to enjoy life. Not whinese my way through it.

Sluggy Bear

I'm too tired to write much.

I'm back in San Antonio. But here is a recap from my Houston visit.

No diagnosis on the neck swelling/pain. Cat scan was normal reading. They mostly concentrated on getting rid of the bronchitis and why I keep having fevers. Had a chest x-ray - all clear (yay)

Had some blood work done. All good, low magnesium, low immunosuppressant level (no bueno)

Met with Dr. Q, my MDA transplant doctor. Tells me that I need to up my magnesium and my tacro (immunosuppressant). I got a rash the day before my appointment. They did a skin biopsy (results not ready yet) to see if it is graft vs. host disease. I got a few stitches, but it wasn't really painful.

Dr. Q thinks that because I stopped the steroids while my tacro level was so low (since Feb, but hey... they didn't tell me to take more) that my body may be overwhelmed with graft vs. host issues.

He also got some blood tests to check some muscle level to see if perhaps I have gvh in my muscles, which would explain the extreme shortness of breath and the muscle pain. He also said that I really do need to find an oncologist in San Antonio, and a primary care physician. These might be tricky as I'm about to lose my insurance and have some issues with Medicare (missed some dang deadline - long story). He also told me that Dr. B at the transplant clinic should be my primary transplant doctor and that I should only go to MDA for checkups. This is not sitting well with me as every time I see Dr. B or anyone else at Methodist I end up with some big out of pocket expenses.

I'm pretty frustrated with all of this. I still feel terrible and am living on vicodin. I'm try to be more positive about this and move more, but I feel like my muscles are on fire. I'm just a mess. Truly.

Zoe is great. She's been so sweet to me. I missed her so much and am trying so hard to feel better so that I can do more things with her. Lots of school, soccer, and girl scout activities coming up that I need to do.

Oh well. I can do this. I have my family and their love.

Your assignment today is to start eating healthy. Be good to yourself. Get a massage. Take a bath. Hug someone.

P.S. Happy belated birthday to my cousin Rebecca. She's my godmother and is super cool and awesome!!

Yup, She's a Badass

I think the chicas in my family are just a bunch of badasses!

Sis #2 got her blackbelt - woo!

(her arm)

She says,

"two years training

25 lbs lighter

BLACK BELT BABY!!!!"

She's awesome. I'm so proud of her. We had a sort-of surprise party dinner for her Friday night. She had no idea we'd be there, but Mom, Dad, Zoe, Sis #1 and my niece and I were all there. The look of surprise on her face was priceless. She kicked butt - I never doubted she could do it. Sis #2 ROCKS IT!!

A Call From the Bird Talker

For Zoe:

Zoe called me up and was like, "Mom! Listen to this." Then she proceeded to Arm Pit Fart for about 30 seconds. She found it entirely hilarious.

She's totally my child.

I remember she was little when she saw something on tv that said if you put spaghetti in your armpit (although then she called them armpins) that you could make a farting noise. She totally tried it too one night. What a mess.

I have 3 doctor appointments tomorrow. Nine, 9:30 and 1:30. I emailed them today and said that I'm still having low grade fevers. I am just losing faith that they can figure out what's wrong with me.

I don't even want to think about the insurance mess I'm fixin to be in. Sis #1 is trying to help me figure it all out, so I'm not going to worry about it.

I can do this. It's been a long week of missing my Zoester.

Your assignment today is to try to do something immature and childish - like armpit fart. Or do a cartwheel. Play with Play Doh or squirt a water gun. Zoe just made me crack up tonight. I want to see that squeezer so bad.

Well Hell

My fever is back. I'm still hacking. The antibiotics are making me nauseated. Zoe is missing me like crazy and vice versa.

For Zoe - one of our favorite songs that I'd love if Allison S could sing a video (pretty please):

Will this ever end? Which way? Dying or getting better?

I feel like flipping a fucking coin or checking with my magic 8 ball. It probably would tell me more than the doctors can.

I can do this. Even though I don't feel like I can anymore.

Your assignment today is to wish Sis #2 some good mojo. Saturday she is going for her blackbelt in Tae Quan Do. She's a badass and I love her!!

I really miss Zoe. It hurts.

For someone else. You know who you are.