I finally (after joining online 2 years ago) went to a meeting of FMS/CFIDS support group here in NYC. It was held in a large public restaurant/coffee shop and there were about 9 people, all women except for one very quiet man who disappeared quickly.
Unfortunately, it was a very hot day and I walked from the train not realizing how far it was, duh. It was hot, crowded and noisy in the place and it was really hard to hear anyone across the table. We kept changing seats in order to talk to everyone.There was sensory overload and it was kind of chaotic but it was quite an eye-opener for me: all of us were unable to work, some were more mobile than others. Some of us had symptoms since childhood, or puberty, some since accident or illness, some since menopause.
Some could take no meds because of side-effects, some were heavily medicated.
If one med worked for one didn't work for another.
We had different kinds of pain: muscle, nerve, skin; dull, sharp, electric-shock.
But all of us had pain and fatigue.
And we all felt like our lives were stolen away.
It was amazing to discuss all this stuff with real-live humans but also rather exhausting. I hope next month's meeting is in a quieter place.
Sgt Pepper is 40 years old? How can that be? I vividly remember hearing it for the first time (a bunch of us gathering at Mary Rock's house, reading along with the lyrics!) and being blown away. It seems like it was just the other day!
Caramel dog is doing OK so far with her heartworm treatment. She needs to avoid exertion but has been pretty lethargic anyway. Me too. The hot weather and pollen and allergens floating around does not agree with either of us- she sneezes, my nose runs.
Steve got me Michael Chabon's new book " The Yiddish Policeman's Union" a noir-ish tale about a Jewish State, not in Israel but Sitka Alaska. I love his writing and this one lives up to expectations. Happy, happy!
Wednesday, May 30, 2007
Tuesday, May 15, 2007
Caramel and I get good test results
Caramel is in the hospital, she had her heart sonogram yesterday and they found fewer heartworms then they expected which very encouraging. She had her first treatment, an chemo-like arsenic-derivative injection. Hopefully, things went well and she will return home tonight. She will need a month of restricted activity then another overnight treatment followed by another quiet month. The poison will kill the heartworms but until they are eliminated from her system they can form lethal clots in her heart and lungs which is why she needs to avoid any exertion. Oi, I'm very nervous! Every time we, or anyone enters the house she gets very excited which leads to coughing which can be dangerous.
I'm wondering how I will keep her calm (she's so enthusiastic!) and stop her from following me around the house and up and down the stairs. For 2 months!
Well, I had my colonoscopy last Wed and apparently, they liked what they saw.(!) It wasn't bad at all although like the last one, I had gas for 5 days afterwards. Quite possibly because of the twistiness of my kishkes. Also, my chest Pet scan looks good. And, I finally got my CPAP machine last Thursday. It will take a while to get used to the nasal-pillow thing but the moist, cool air is already helping my breathing.
I'm glad I'm not a judge on DWTS- I'd have a hard choice between Laila and Joey. Apolo is adorable and talented but, not enough. And poor Ian has to go.
Dr Moorehead, the Vet just called and said that Carrie did well and can come home tonight!
I'm wondering how I will keep her calm (she's so enthusiastic!) and stop her from following me around the house and up and down the stairs. For 2 months!
Well, I had my colonoscopy last Wed and apparently, they liked what they saw.(!) It wasn't bad at all although like the last one, I had gas for 5 days afterwards. Quite possibly because of the twistiness of my kishkes. Also, my chest Pet scan looks good. And, I finally got my CPAP machine last Thursday. It will take a while to get used to the nasal-pillow thing but the moist, cool air is already helping my breathing.
I'm glad I'm not a judge on DWTS- I'd have a hard choice between Laila and Joey. Apolo is adorable and talented but, not enough. And poor Ian has to go.
Dr Moorehead, the Vet just called and said that Carrie did well and can come home tonight!
Thursday, May 03, 2007
Sick puppy, sealed house
That's what the Vet called Caramel. He called Wed with the results of her bloods. He wants to do more blood tests because her urine shows high protein which could mean her kidneys are involved. Then we have to do a heart sonogram to see how many worms she has. Then, he suggested a new angioplasty-type procedure to remove the some of the heartworms before they start medicating her which would increase her chances which, he says, are better than 50-50. This procedure is only done in Philadelphia, 2 1/2 hours away.( She doesn't travel well.) She has been OK on the hydrocodone (which, I found out is Vicodin) - no more coughing blood. But the roofers are here today, banging away and using acetylene torches, and are disturbing her. Me too - I can't take a shower either, cause we have a skylights in the bathroom. As long as I'm by her side she's calm. But I am crazed today and when I'm crazed I can't stay still so she keeps following me up and down the stairs. We can't go walking, I'm one-armed and I can't do yoga so the remedy is cleaning. Or cutting my hair, which is already too short. Believe me, I'd rather have a glass of scotch. Or a entire strawberry shortcake, but that would just add insult to injury. At least I cleared out the bottom of 2 closets and some cabinets and drawers- how satisfying! In the process I hurt my bad arm (of course) so I now will collapse. Also, the cleaning lady just came and I need to get out of her way. She is helping me with my Spanish and I her with her English. Desempolvar means, to dust. How encantado is espanol?
Thursday I go for a Pet scan so Caramel will have to be alone. I hope she doesn't bark at the workers, I'm nervous it will make her cough. I'm stressed that she'll be stressed. There are 4 people in, on and around my house, all making lots of noise. I'm watching a guy right outside the 2nd floor window and there's another guy above me. Roofing is a dangerous and filthy job isn't it? It's no Dancing with the stars, for sure. I love Joey and Laila both. She's too gorgeous for words but Joey's got the musicality and that professional look. I'm sooo loving this show, it's a great distraction. We need more dance on TV! And less crap.
Thursday:
Well, when I went to post Wednesday I got an error warning. After much trial and error, ( log-off, check modem, piss and moan) I discovered that the phone was dead too. Remembering the worker outside the window I surmised that he accidentally cut the phone lines. Luckily the mf was here yesterday to let the phone guy in cause I was out. I got home just as phone guy was leaving. "Come through the house", I said graciously not realizing his shoes were full of tar from the roof. He left footprints in the kitchen, dining room hall and the pink area rug in the foyer. What it is with these phone people? I had to go on my hands and knees to remove it with cooking oil (a trick I learned from a lifeguard when I lived at the beach) then rewash the floors to get the oil off. Did I mention the cleaning lady was just here Wed?
I'm tired and a little slap-happy. Current events and the full moon have resulted in little sleep. It's been 3 weeks and still no CPAP machine. I keep calling about it and they give me the run-around. People really suck, most of 'em.
Not the roofer/mason guys tho. Despite torching the telephone lines, they are very sweet, efficient, very neat and most importantly, expeditious. The roofs (this tiny house has 4 of them) and the leader and gutters are done.The steel hatch door to the basement has been replaced. They have dug a mad big hole in the basement for our new dry well which should help keep the rain out. We had the outside wall patches and stucco-ed and it looks clean and creamy and no bricks are showing. They will re-point the stoops and when they are done, we put will in a wood fence and enclose the backyard. The garden is blooming lilacs, tulips, ajuga, azaleas, violets and bleedingheart, all pinks and purples awesome!
Carrie's okay, the workers still make her bark sometimes so we can't sit tin the yard but she's not coughing. Still no word fron the Vet. I really hate waiting for test results. It's so beautiful outside and she wants to go walking but she can't have too much exertion or excitement. I am going to Fairway with Char and the kids ( a 3yr and a 7 month). I don't really want to shop, I just want to play with the girls, they are way cute. I could actually, I cold use some delicacies- Morgana is coming to visit next month! A benefit from Jet Blue for having messed up her Valentine's day flight. Thank Goddess! I could really use some Morgana right now. I can't wait to see you!
Thursday I go for a Pet scan so Caramel will have to be alone. I hope she doesn't bark at the workers, I'm nervous it will make her cough. I'm stressed that she'll be stressed. There are 4 people in, on and around my house, all making lots of noise. I'm watching a guy right outside the 2nd floor window and there's another guy above me. Roofing is a dangerous and filthy job isn't it? It's no Dancing with the stars, for sure. I love Joey and Laila both. She's too gorgeous for words but Joey's got the musicality and that professional look. I'm sooo loving this show, it's a great distraction. We need more dance on TV! And less crap.
Thursday:
Well, when I went to post Wednesday I got an error warning. After much trial and error, ( log-off, check modem, piss and moan) I discovered that the phone was dead too. Remembering the worker outside the window I surmised that he accidentally cut the phone lines. Luckily the mf was here yesterday to let the phone guy in cause I was out. I got home just as phone guy was leaving. "Come through the house", I said graciously not realizing his shoes were full of tar from the roof. He left footprints in the kitchen, dining room hall and the pink area rug in the foyer. What it is with these phone people? I had to go on my hands and knees to remove it with cooking oil (a trick I learned from a lifeguard when I lived at the beach) then rewash the floors to get the oil off. Did I mention the cleaning lady was just here Wed?
I'm tired and a little slap-happy. Current events and the full moon have resulted in little sleep. It's been 3 weeks and still no CPAP machine. I keep calling about it and they give me the run-around. People really suck, most of 'em.
Not the roofer/mason guys tho. Despite torching the telephone lines, they are very sweet, efficient, very neat and most importantly, expeditious. The roofs (this tiny house has 4 of them) and the leader and gutters are done.The steel hatch door to the basement has been replaced. They have dug a mad big hole in the basement for our new dry well which should help keep the rain out. We had the outside wall patches and stucco-ed and it looks clean and creamy and no bricks are showing. They will re-point the stoops and when they are done, we put will in a wood fence and enclose the backyard. The garden is blooming lilacs, tulips, ajuga, azaleas, violets and bleedingheart, all pinks and purples awesome!
Carrie's okay, the workers still make her bark sometimes so we can't sit tin the yard but she's not coughing. Still no word fron the Vet. I really hate waiting for test results. It's so beautiful outside and she wants to go walking but she can't have too much exertion or excitement. I am going to Fairway with Char and the kids ( a 3yr and a 7 month). I don't really want to shop, I just want to play with the girls, they are way cute. I could actually, I cold use some delicacies- Morgana is coming to visit next month! A benefit from Jet Blue for having messed up her Valentine's day flight. Thank Goddess! I could really use some Morgana right now. I can't wait to see you!
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