Memories of MySpace

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1. What was the highlight of your week?  My husband came home from the hospital today!

2. Whose car were you in last? My father-in-law’s. We came home to a koi health crisis in the pond, and my FIL helped us out.

3. When is the next time you will kiss someone? As soon as my husband wakes up, I’ll give him a kiss. Just for you.

4. What color shirt are you wearing? A light blue Doctor Who shirt

5. How long is your hair? Really long right now. Past my shoulder blades. I’ve been thinking of doing something drastic about it, but I’m kind of a wuss.

6. Are you good looking? Depends on if I’m crying or not.

7. Last movie you watched? LOTR: The Two Towers

8. Who was you with? My husband. He chose the movie, but I kept switching it back to watch the World Series. Go Cardinals!

9. Last thing you ate? A granola bar and pita chips.

10. Last thing you drank? Hot chocolate.

11. January and it’s been broken ever since. I think most people assume that hearts are only broken from romance.

12. Who came over last? My father-in-law.

13. Are you happy right now? No. My husband is still very sick, disability doesn’t cover what we need it to, I’m infertile, terminated my only pregnancy to save my daughter from pain, and am facing a childfree future.

14. What did you say last? It was me. Something about my husband’s eye not closing while he’s sleeping. Half of his face is paralyzed and I wasn’t sure if he was asleep.

15. Where is your phone? In the bedroom charging. I was going to take a picture of my sleeping husband with a sleeping cat on his chest. 🙂

16. What color are your eyes? Blue.

17. Are you left-handed? Right.

18. Spell your name without vowels: I don’t trust the people who stumble across my blog. The anti-choicers are crazy. I am not about to risk it.

19. Do you have any pets? The cats, 9 koi (I sure hope my sick one makes it!), and two budgies.

20. Favorite Vacation? I think my favorite was last year when I went to Sinya. I was newly pregnant and still naive about what my future held. It may be my favorite, but it’s still too painful to think about.

21. What do you dislike currently? Guillain-Barre Syndrome. Infertility. Spina Bifida. Disability insurance. Cigna. Dropsy in koi. My luck.

22. What are you listening to? The refrigerator and the chirping of budgies.

23. If you could have one thing right now what would it be? Happiness.

24. What is your favorite scent? Grapefruit? Lemon? Maybe eucalyptus.

25. Who makes you happiest? My family. ♥

26. What were you doing at midnight last night? Waking up from the nurses and the IV machine. That thing is LOUD!

27. When is your birthday? I’m a Virgo.

28. Who has the same phone as you? My husband.

29. Last time you went swimming in a pool? Sometime in the summer.

30. Do you read your horoscope? Not really.

31. Where was the last place you bought something? Antibiotics at the koi store and rock salt at the grocery store.

32. How do you feel about your hair right now? It’s hair. How am I supposed to feel about it?

33. Do you bite your nails? Sometimes I bite the cuticles.

34. Do you have any expensive jewelry? Maybe. I have some nice pieces, but I don’t really care that much about expense.

35. Do you have any expensive jewelery?  …

36. Myspace or facebook? This really must be an old survey. I prefer Pinterest.

37. How fast have you driven a car? 70? Uh. Maybe between 100-110. I was trying to get to Austin to testify, so I spend the entire way there.

38. Have you ever smoked? I think I can count the number of times that I have attempted to smoke on my hands.

39. What was or is your favorite subject in school? High school: English and Theatre. College: English and Philosopy.

40. Do you have Verizon? No.

41. What type of boy or girl do you usually fall for? A smart one who is nice. I like nerds. Or artists.

42. Do you have any hidden talents? I don’t really hide much.

43. Favorite Song? Imagine by John Lennon. I have lots of favorites, but that one is pretty damn powerful.

44. Do you like to sing at all? I love to sing! Bystanders, however, are not so thrilled.

45. Dream Job? I don’t know anymore.

46. Where does most of your family live? Missouri. Or Scotland.

47. Are you an only child or do you have siblings? Only child. I had a step-brother at one point, but I try to forget that time of my life.

48. Would you consider yourself to be spoiled? My husband and I spoil each other. It’s a benefit of being a DINK.

49. What was the first thing you thought when you woke up? We get to go HOME today!

50. Do you drink? Socially.

51. Know any other languages? I know a little Doric.

52. Ever write a coded message? Only if you consider the IPA a code…

53. Have you ever been IN a wedding? I’m 35. Been married twice. Yes. I have lost count.

54. Do you have any children? Why don’t you read the About Me section if you don’t know the answer to that question.

55. Did you take a nap today? Yes. At the hospital while waiting for release.

56. Who has the same birthday as you? Lots of people. I can think of five off of the top of my head. One being an ex-boyfriend.

57. Ever met anyone famous before?  I waved to Billy Ray Cyrus before…and I met the lead singer of CAVO @ a family members wedding….

58. Do you want to be famous one day? Photography wise, Yes.

59. Any Pet Peeves? When my mom snap/pops her gum in her mouth…

60. Are you multitasking right now? Nope

61. Do you like Brittney Spears? Yes (:

62. What is your least favorite chore? Cleaning the bathroom….ew.

63. Last place you drove your car? WalMart

64. Ever been out of the country? Yep. Mexico, New Zealand, Scotland, Northern Ireland, England, Grand Cayman Island… I think that’s it. I’m not counting layovers.

65. Where were you born? A hospital.

66. Could you handle being in the military? Nope. I’m not a fan of the military to begin with, but I certainly don’t have it in me to do basic training.

WHAT HAPPENED TO 67?

68. Who are you thinking about right now? My koi fish. 😦

69. When was the last time you laughed REALLY hard? I laugh all the time, so it’s hard to remember.

70. How many pairs of shoes do you own? More than ten pair.

71. Are your toes always painted? Eh. They usually have some paint on them.

72. How many piercings do you have? Just my ears.

73. What are you doing today? Watching my sick fish. Getting ready for work tomorrow. Taking care of my husband.

74. Have you ever been gambling? I gambled with IUI’s, but I don’t think that it what this question is about. Yes, I have gambled, but I don’t like it.

75. When is the last time you updated your page? I don’t think this is relevant because I don’t use MySpace anymore. I guess a few eyars ago? I don’t know.

76. Do you like rollercoasters? I like woodies.

77. Have you ever been to disneyland or world? Whichever one is in Florida. I’m not a Disney girl.

78. Do you have a favorite cartoon character? I like cartoons. The Monarch is cool. So is Master Shake. I also like Lowly Worm. I’m sure there are more.

79. Last thing you cooked? I think it might have been stroganoff.

80. How’s the weather? Humid and post-rainy.

81. Do you e-mail? Eh. Not really.

82. What’s the stupidest thing you ever did with your cell phone? Drop it on my head? Called an ex?

83. Last time you were sick? I don’t know. I’ve been a little preoccupied, but I don’t get sick that often.

84. What states have you lived in? Only states that I am not proud to hail from.

85. Do you wish you could move? Yes. YES. YES!

86. Do you take all the *advert deleted* quizzes? Yeah. I take them all. Sure.

87. What is your dream car? Sting-ray Vette.

88. Have you ever wanted someone you cant have? Just my daughter.

89. If you could be anywhere right now where would it be? As long as I’m with my hubby, I’m ok. I’m happy here at home.

90. Are you happy with your life? Which part? The TFMR? Infertility? Caretaker of a sick husband? Or the fairytale romance? I like parts of it.

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Whatever.

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DH went to counseling with me yesterday. We focused on incongruent grieving. He seems to think that my blogging and TFMR message board is just wallowing in grief and pain, and is self-inflicted triggers. He said other things that were true, but I think that his eyes might have been opened after the counselor read a few snippets from my blog posts that I shared with her. I don’t think he really understood the lingering affect that all of this has had on me.

Apparently my word choice is quite “vivid” – I think that’s a polite way of saying melodramatic. At one points yesterday, I described myself as a decaying tooth, broken and gray. The counselor asked if I could stop using metaphors and use specific adjectives instead. I can’t really remember why she said that, but I know there was a reason. I may have to ask her about that next week.

While I was there, a current student was also in the office. Awkward. I mean, I’m not embarrassed about getting therapy, but it did trigger reminders of when I kept seeing students in the OBGYN’s office when I was pregnant. Let’s just hope I don’t see any tomorrow when I’m there for my Well Woman’s Exam and birth control. Double ugh.

So tonight, we got ANOTHER blow. It looks like we might have to replace both air conditioner units. REALLY? This couldn’t have waited until DH is at least back at work getting a full paycheck?

I really am trying to stay positive about things. Really. But every time I start to perk up, something comes along and knocks me back down.

Today is October 15th, and it’s Pregnancy and Infant Loss Awareness Day. I had planned on writing a post focusing on this, but I don’t think I can emotionally handle dragging myself through that tonight. Another day, but I just have too much else going on right now.

I’m Angry

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I started to post this on the co-blog that DH and I have started over his medical conditions, but decided that it was going to turn into a rant and want to keep a more positive attitude on that page.

But I find keeping a positive attitude harder and harder with each passing day. I think DH is starting to relapse. His pain isn’t getting any better. I know that people with this syndrome recovery slowly, but I’m terrified that this is going to affect his heart and lungs again.

I’m scared that people think I’m exaggerating or making shit up. It’s embarrassing when people recognize that I’ve had a “bad year.” I’m horrified that I’ve missed so much work. Honestly, I don’t like to miss work. That’s why I had almost 40 days saved up before all of this started happening. I think I’ve taken more time off of work in the past year than I have in my teaching career. I joke that I’m a part-time teacher.

DH is worried that I’m starting to resent him. I’m not. Honestly. I’m just tired. I find that I’m snapping at him more than usual, but that’s probably just PMS. Oh, yeah. Let’s add that in. I’m starting my period (we haven’t DTD since before he got sick) and I’m going to the OBGYN Wednesday to get back on birth control.

I don’t feel like I’m losing it just yet, but I just feel very drained and pulled, like pizza dough that’s been rolled out too thin. I know people say that I need to take time for myself, but I don’t think I can afford it. DH isn’t worried about finances right now, but I am. We got his first disability check in the mail ($550) and I flipped out, thinking that was what we were getting for the entire month. Thankfully, I was wrong and we’re getting $1100 a month, but I’m still concerned.

Last night, we watched The Mothman Prophecies and there was a line that resonated with me regarding the death of the main character’s wife: Two weeks ago, we were house hunting. One day you’re just driving along in your car, and the universe just points at you and says, “Ah, there you are, a happy couple. I’ve been looking for you. I’ve been looking for you.”

I feel like instead of pointing at me, the universe has had its thumb down on me.

I think I even made a post about being positive a few weeks ago regarding being positive – something like “No matter what, at least we’ve got our health!” and how thoughts like that just made me more depressed because it reminds me of what all can go wrong. Kinda like when the counselor asked me if I used affirmations, and I told her not since my last one, the one I used when I was pregnant, the one that went so horribly awry. The affirmation? “I’m ok, the baby’s ok, everything is going to be all right.”

My husband is worried that I’m going to resent him, but I really feel like he’s resenting me because I’m still mourning. Anytime I mention being angry or jealous, he gets upset. He is still very sensitive to triggers though, like when I freaked out on Friday in the waiting room while he was getting a blood test. He’s gotten over it and I haven’t.

I’m just going to hit post without editing or adding tags. We’re going to watch a movie and then I’m off to bed.

Realizations

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So, DH is home and is in a wheelchair. He can walk short distances with a cane, but it wears him out quickly. He has more medication than I’ve ever seen before, and he still has bouts of excruciating pain. But this entry isn’t about him. It’s about me dealing with his illness and the possible future that my daughter might have faced.

First of all, I have no idea how I could have physically, emotionally, or financially handled having a disabled daughter and a disabled husband at the same time. How could I split my time between ICU and NICU?

DH is dealing with many things that my daughter would have faced, had she survived. Nerve pain, so I’m told, is a totally different beast than regular pain. The ataxia is frustrating and embarrassing for him. The wheelchair is a giant pain in the ass – lifting it in and out of the trunk is doable, but I am exhausted after every outing, and he’s only been home two days.

I have to clean, cook, work, do laundry, take him to his appointments, go to my appointments, and help keep track of his medical issues. I’m not resenting him at this point, but I’m just tired. Tired to point that I feel sick, like I’m going to throw up.

Is it horrible that feel relieved that I don’t have two disabled people to care for? That I feel like I have gotten confirmation that I made the right decision to prevent all this pain for her. what my husband feels is just a fraction of what she would have to put up with.

I’m still terrified. We saw a new neurologist yesterday, and she is worried about a relapse or that he has a long-term version of this syndrome. We think his heart and lungs are stable now, but she told us that people with this syndrome and his symptoms have a 50% mortality rate.

50%Long-time readers will remember that I have an obsession with statistics. My baby had a 1:1000 chance of myelomeningocele. DH had a 1:100,000 chance of GBS. He had a 1:50 chance of dying.

I don’t know what to think of all this, but it’s been running around in my head for the past few days.

Cut Me a Break

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Waiting on DH to get blood work done. Does there really have to be a pregnancy/baby show on in this freaking waiting room?

I know it sounds insensitive,  but I don’t care if she had her baby while her husband was serving overseas, at least she has a baby.

I’m really tempted to ask if I can change the station. 

And,  I did.  I broke the TV. The nurse had DH come out and they let me come back with him.

I feel like a giant baby. A loser. A drama queen.

I hate triggers.