In Houston Hopefully Gustav Won’t Be!

I’m still in Houston at Sis #1′s casa. I’m still coughing and it looks infected when I cough it up (can you say hairball?)

I have to stay here at least until Thursday or Friday, but am hoping we don’t get rainfall or any big time wind from the storm that is headed in the Gulf.

I just feel really overwhelmed and exhausted.

I am now on 3 antibiotics. Yay for superbugs. The prelim catscan of my head & neck look ok. Dr. Q, my MDA transplant doc, says so far it looks clear, but they will need to get the official reading. I was hoping for just some inflammation or sprained neck or something because the pain is just awful. I am pretty much living on one Vicodin a day. I try to skip as often as I can as I don’t want them to lose their effectiveness.

I watched Across the Universe, which is a movie that has Beatles music in it. I thought it was pretty amazing.

Again, too tired to write much.

I can do this. But I’m needing some Zzzzzz’s.

Your assignment today is to prepare a disaster readiness plan. Have a meetup location for your family. Have a working flashlight and set aside some new batteries that will make it work. Get all the gear you would need in case of an emergency and put it all in one place.

I’ve been attacked by vampires

Went to the MD Anderson ER yesterday.

More bloodwork
Another chest x-ray (clear)
More antibiotics
An order of a catscan of my head and neck
An order to follow up with my transplant clinic.

I woke up coughing my head off. Trying to figure out how to make my ct appointment.

Missing Zoe like nutso!!!

ok. i can do this if i don’t die of frustration first. Love love

Send it in a Certified Letter

Dear Ms. Debutaunt,

 

We have been unable to establish and maintain a satisfactory physician-patient relationship for your medical care. Therefore, we find it necessary to inform you that we will no longer be providing professional care to you.

If you are in need of emergency services in the next 30 days, we will be available*. During this time, we urge you to call your local medical society or your insurance company and select a doctor of your choice for your medical needs. We will make your records available to your new physician upon receiving a written request, which I am enclosing for your convenience. Thank you.

Sincerely,

Lawrence A. Alder, M.D.


DEBU_TRANSLATION:

Dear Deb,

Because I dated you and dumped you for this crazy bitch, she had a shit fit and said that I couldn’t come be one of your assistant’s patients anymore. It doesn’t matter that you are desperately sick, I am such a fuckwad that I don’t have the balls to stand up to this bitch girlfriend of mine. I don’t have the integrity to do my job as a physician and help you when you are truly in need.

Insincerely,

Dr. Larry Asshole

Well you know what? Fuck you, dude! You and that crazy chick deserve each other.

My San Antonio transplant doc also contacted me today. I understand where he is coming from, but what he is asking isn’t always feasible. He told me that I need to have all of my care at MD Anderson. Ok. So what if I’m incredibly sick and need to go to the ER? I’ll take my invisible jet to Houston and go to the docs there Wonder Woman style. He recommended that I go to the MD Anderson ER ASAP. I phoned my Houston clinic and they agreed. They said that if I continue to feel bad and still have fever that I should come in. I’m going to try to go tomorrow. Today is over.

Today I feel lethargic and really really sore. My neck is killing me. I’m just very dejected and feel like no one will ever figure out what is wrong. I feel worse than I did before when I had cancer. I have no life because I am so tired and in pain, it makes doing the most simple things so difficult. I’m missing Seattle and Tim way way alot. I read through some old blog posts and saw that the first two times we were together (in SA and my first trip to WA with Zoe) I felt healthy and great. How did that go so wrong?

I can do this. I just am reaching out for some help.

Your assignment today is to do something nice for someone. Love love.

Um. Hate the ER

Sorry, a bit TMI. I have a Urinary Tract Infection. 101.5 fever. Bronchitis. No diagnosis on the painful, swollen neck. I hate the ER.

 

Ok. So my friend, the doc I dated a little, acted like an asshole. I forgot my phone in the car otherwise I would have posted his text message here.

A week ago I phoned him to see if it would be ok to set an appointment with one of his Physician Assistants. He said, “Sure, no problem. Call the office and set one up. If they can’t get you in early enough, call me back.” Cool. Thursday doctor’s appointment and then labs and the script for a chest x-ray and a catscan of my neck.

So Sunday I sent him a text asking when their labs are usually ready. I couldn’t do the catscan until I had the results. I get this shitty shitty text back that basically says, “I am in love with my girlfriend (name left out) and we live together and are going to get married. Because of our past, I think it would be best if you found another practice. Lab results in a.m.”

Jiggafuckwhat???

Who the hell does he think he is??????

a) we barely dated. We had a friendship and not a relationship!! He dumped me for his crazy, loony girlfriend and I was all good with that. He’s still not divorced from his crazy first wife. Can you say, run Forrest, run from that relationship.

b) I adore adore adore my debu_sweetie Tim. Nuff said.

c) HE was the one who told me to come in – very casual and didn’t sound like he was concerned or that it was a big deal.

d) He has issues. Major major issues. More than Brittney Spears issues, no lie. He’s a good doctor, but a wackadoodle.

e) He’s not Brad Pitt. He’s not even Brad Pitt’s limo driver’s ugly second cousin. He’s not hideous, but he’s ordinary. Tim is adorable! No comparison.

So. So. I basically reply and say I’m soooooo not interested and that I’m in love with Tim. That I need a doctor, not a boyfriend.

No answer.

Then I text that I really really need my test results. No answer. Call his office. Closed for 2 hours for lunch. Finally get through at 2:15 and she says they are in, and she will give the nurse a message.

Ok. So I’m already really pissed and I feel like caca. I swoop up my girl, Zoe, at school and drive to his office. I come in and the receptionist tells me that my labs are not in my file. I told her that they were in apparently and that I’ll wait to get them.

She makes it sound like it’s Grand Central Station and that they hadn’t even reviewed the results… “Um… We DO have other patients.” No shit, Sherlock. I’m standing in front of her, wheezing and gasping for breath, sweating with fever. Finally after about 25 minutes, I get the results. No report or notes. Whatever. Fuck them. I notice a few weird things on some thyroid tests, but I don’t understand them. Whatever. Later.

I then call my San Antonio transplant clinic. I tell the nurse the situation and that I feel pretty awful. She says she will find out what I should do. She calls back and tells me that I haven’t been in their office since April and that I need to come in when I’m well and also when I’m sick. That I can’t just call them up when I’m “desperate.” She tells me that my doctor said for me to “Go to Houston and see my MDA doctor.”

How does this make sense? I don’t go in for checkups that often. I think I’m every six months or so. Why would I go to TWO hospitals to get checkups and tests??? Not to mention, I don’t go to my SA doctor here in town that often because I always end up with an out of pocket bill that seems like bullshit. I don’t have financial aid there, they don’t offer financial aid here in San Antonio, but my out of pocket costs at MD Anderson are minimal and my meds are affordable there.

So I call my awesome friend, Michelle, who is a doctor at MD Anderson. She also advises me to go to Houston if I can. I know I’ll get the best treatment. They know me. They know my history and they also know how dangerous a long fever and congestion can be. Bonus – competency and knowledge.

I talk to my sister and mom. They both agree that I’m in no shape to travel right now. You know, since I don’t have a private jet or chauffeur at my disposal. Sis #1 recommends that I just get to the ER at my local hospital – at least they have some records on me and they have a transplant department.

Six hours. $100 copay. Possible post-visit costs. Four chest x-rays. An IV and 2 blood draws (one that gushed onto the floor). An EKG. At least I know I don’t have pneumonia, found the UTI and I got a script for Levaquin (antibiotic). The only good thing I have to say for the visit is that the staff is remarkably nice. And they seemed really thorough and competent. Thanks for that. It was crowded and busy. They could have been a-holes.

They also tell me that the transplant doctor on call said for me to follow up with them within 48 hours. Um. I tried to make an appointment for this week and was told to go to Houston. I should make them reimburse me the $100.

I’m frustrated. I need my Houston doctors. I can’t afford to live in Houston. All I could think of on the way home is that I’m grateful that so far they haven’t found anything serious. But for a minute, when they told me they needed additional x-rays, I started getting scared and had flashes of something being serious and then getting the worst treatment ever when my insurance runs out and I have to go on Medicare in October.

I can do this. I just want to start feeling less pain.

No assignment tonight. It’s after 3am and I’m just plum out of steam.

P.S. Zoe needs me. I love that little girl like no tomorrow. She was fast asleep, but as soon as I walked into our hallway at 2:30 a.m. she said, “Mommy?” I went in her room and squeezed her up a little and re-tucked her back in. She’s precious. Magic. Sometimes I think it is her love for me that keeps my heart beating. That keeps me from giving up. I think that’s how kids are supposed to make you feel; when they aren’t driving you bonkers. Love love.

Slow News Day

You just won the lottery …. What would you do?

 

Stolen from Sandy (hiya!!!)

1. What would be the very first thing you would do? Pay off debts. Fly to Seattle to see my sweetie and Jeanne. Get some great insurance.

2. Where would you choose to live? Most likely Seattle. With a view of Puget Sound or Lake Washington

3. What kind of house would you live in? Something big enough for me and a bunch of visitors. Nice views. Big kitchen with fancy appliances.

4. What kind of car would you buy? I’d buy a few people cars first – like my Bro #1. I like my car but I would get the body repair work done (new bumper and new door handle, misc scratches.) Then I will buy a small, four door Mercedes.

5. Where would you vacation? Europe. All over the US. But only when it’s cooler.

6. Would you have anything on your body fixed? Maybe some skin lightening procedures on all the freckles that I got from radiation. I’m too scared to do plastic surgery.

7. What kind of hobbies would you engage in? Cycling and maybe buy a boat.

8. What charities would you donate to? The Leukemia Society and The Bone Marrow Donor Program. MD Anderson too. And whatever school Zoe would go to. And I’d research autism charities.

9. Would you give money to your relatives? If they needed it

10.Would you run away from your current life? Nah. It’s pretty good. I’d spend more time seeing doctors to see if I could figure out why I feel so craptastic. Then I would keep on keepin’ on.

11. Would you continue to work? Only volunteering when I wanted to.

12. Would the money change you in any way? Yes…make things a little less complicated.

No Whammies!

That’s not a radio station, but what my temperature has been.

One minute I’m burning up and the next, I’m freezing.

I’m just a hot mess! Although I have to say it’s kind of cool to have hair long enough to put in a ponytail. Albeit my pony is only about 2.5 inches long.

One bright spot is that the doc’s office said that since the last time I was there in Feb, I’ve lost 13lbs.

I wish I could figure out how to get to Houston. I’d go in a minute, but then my mom and dad would have to take care of Zoe. Zoe gets really anxious when they do. I am thinking about maybe asking one of her friends to drive her to school or set up playdates so that she is not as upset about the prospect of me leaving town.

This is what my neck looks like sans the fat on the sides of his face. And the line that says “Here” is more where it is located. Although I have to say I have a much longer neck than Jon L does, so it’s maybe a little higher. And my doc did say it’s higher than a normal thyroid issue would be, but that’s kindasorta what it looks like.

lovitz 2.jpg

I just can’t imagine that all of my symptoms are related to steroid tapering.

Natalie Dee always knows just what to say:

self-diagnosis-is-easy.jpg

I also like this one since they say one in three children born in the year 2000 will get diabetes:

start-your-day-off-right.jpg

I can do this. I may be down, but I won’t ever be out. (and what the hell does that really mean?)

Your assignment today is to tell me your favorite breakfast foods.

P.S. I’m missing my debu_sweetie. I can’t really talk on the phone so it’s been some pretty short convos lately.

Meouchouch Part Dos

Had a bunch of blood tests done. Now I have to wait. Never fun. Ranks up there with the no-diagnosis issues.

 

Most likely *not* thyroid, lymphoma or goiter as the swelling is “too high” to be one of those and it isn’t hard (it is a little to me) although it is noticeable. She said there could be some steroid-related issue. I have now been off steroids for two weeks.

I may have allergies, but my Zertec didn’t do squat. I have a really hacky cough and now have totally lost my voice. I also have a low grade fever and a rash again. And I don’t feel like eating anything as it’s so hard to swallow. The painkillers I took haven’t helped. I feel like I’m having a hard time breathing. My collar bone hurts and is swollen. One of the meds that the pain management group gave me is an anti-inflammatory, the other is a pain killer. But I am pretty sure if I want to sleep, it’s going to take a vicodin to do it.

When my labs are done (next week) I will get a catscan of my neck and a chest x-ray. They need to check my kidney function in order to give me the contrast meds if I need them. She said a catscan is probably over cautious but she said an x-ray or ultrasound wouldn’t catch some of the things they need to check.

The PA will be sending my labs/catscan to my docs at MD Anderson also. She’s worried and wants me to see my docs there sooner than later. I also will have a doctor appointment with my friend since he’s more experienced with oncology than my doctor today is.

I really am hoping that they figure out what is going on instead of yet another round of steroid-related causes. I totally want to stay off of them, but if it’s steroid-related, they may recommend that I start taking them again.

I’m still trying not to worry, but I really feel pretty awful. I’m trying to stay positive and in a good mood, but it is really hard when you feel so punk. I feel like I just want a big hug. Sometimes when you feel this terrible, going to sleep is the easiest thing to make the pain go away.

My Zoe is still awesome. We are now reading The Great Brain which was a family favorite. All seven kids read that series and the book we are reading from is stained, yellowed, and the spine is taped together.

I can do this. My kiddo makes me smile.

Your assignment today is to work on organizing your paperwork. It’s back to school time. I used to love to buy new school supplies and get everything organized. Not that it would necessarily last, but it was always kind of fun to start off like that.

Meyouchouch

I have a doctor’s appointment tomorrow. I am now two weeks off of steroids, but I feel absolutely horrible and have for about a week.

 

Something is just wrong with me. I wish someone could figure it out. Now my neck started swelling this week. I’m going to see my friend, the internist, here in San Antonio. Kind of strange because we dated a little before I met Tim. But I’ll be seeing his PA, and that’s fine. He’s going to check my files, etc. Regardless of our past, he’s a great doctor.

I’m not hungry whatsoever, I am hoarse and it hurts to swallow. I’m hoping this is just swollen glands or a minor infection or something, but it’s certainly creepy. And definitely painful.

I sleep all the time. Even major amounts of coffee aren’t helping.

I’m just not going to worry. It doesn’t help anyway. Although I have to say that Googling swollen neck presents some really disgusting results. And some pretty serious diagnosis’s. I’m not sure if I spelled that right, but I’m too lazy to look right now.

Zoe’s great. I’m in a good mood, but just lethargic and in pain.

I’m going to go eat some soup.

I can do this. No matter what.

Your assignment today is to send good thoughts, pray, or whatever for a good outcome tomorrow and that it’s not something serious.

Pencils, Notebooks, Teachers – GO!

My squeezer started 3rd grade this morning. She said she had a great day and likes her new teacher. Last night we prayed for our friends, Tim and his family, our family, her teacher – pretty much everyone. We also prayed that this will be a great school year. Two of her bestest good girlfriends are in her class, so she was very excited.

No time to write as it’s dinner time.

3rd grade.jpg

 

I had to take a vicodin today as the pain was unusually bad. My neck is swollen and it hurts to swallow. I am frustrated. So I slept most of the day away. It felt good. So far, I’ve gone 12 days without any steroids. If I can stay off them (and bear the side effects), my transplant doc said I could start getting off of alot of my other meds. This makes me happy.

School is a’startin’

Home in San Antonio. I still have a ton to unpack, but we’ve been running errands and just relaxing and reading books.

My long summer seemed way too short.

I can do this. I love school supplies.

 

I forgot just how much I love Whitney Houston. I think some of her stuff will have to find its way onto my iPod.