Patient Diary -- Marcia Beverly
smesbevs@yahoo.com
Tuesday, November 18 2008
Blogging for Awareness Day
Today all our friends who have blogs are supposed to talk about the subject of PH. We're all aware of it, and if you're here you already know about it. So the other day I revised my story and wrote an informative email to all my family and friends. I mentioned it in another diary entry. Well, it's interesting... One niece wrote back, another nephew asked for a link to the newspaper article and one friend of my sis-in-law mentioned it at the wedding the other night. Other than that, nothing. So we'll see if anyone says anything at Thanksgiving. I kinda thought I'd get more of a response. Oh well. I did get three people at church to learn about it. So small progress is being made. And I know they know something about it, like symptoms and how hard it is to diagnose. That's the important thing. Late Friday nite I was in the PHA chat room and Colleen finally got through to young Mason Hoffman's mom in Calif. He had been MIA for a couple of days after treatment for his chronic rejection on Monday and Tuesday. To our horror, we found out that he had been in the hospital since Wed and was intubated and sedated! They hadn't thought he would make it through Thursday nite. Sat morning they had to give him 2 L of blood and didn't know where he was bleeding. They don't know what is causing all this. They don't think it's from the rejection. He's held on now and yesterday opened his eyes for a few seconds. Everyone is praying hard for him and hoping he'll pull through this. He's a fighter and so sweet. He shouldn't have to go through all this. The hospital and doctors there don't do second transplants and his mom is collecting information about a possible second transplant if he gets over this. Please keep him in your thoughts.
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Friday, November 14 2008
New Passion, New Friends
Yesterday I wrapped up my PH Awareness doings with a letter to my family and friends. I told them what I'd been up to lately and my goals for PH Awareness. I included websites and attached my story (which I revised) and a copy of the proclamation from my city. I encouraged them to ask questions, find out more and spread the word. Our family has about 70 members and at gatherings we chit chat, but I wanted something meaningful to pass between us. They all know I'm sick, and some know details. But I didn't know exactly how much they knew, or who might not feel comfortable asking. This cleared the air. Now they know some specifics. If they don't want to talk about it, fine. But if they do, I officially gave them my blessing to ask all the questions they want. They are family and can help me by sharing their knowledge and awareness with others. I asked that they share with just one person and the word will spread. At church the other day, I had my display going in the narthex and I visited with an old friend who I hadn't seen in a while. She's had some major health problems and seems to be better now. She invited me to a gathering today of her sorority that helps women's causes. They are having a bake sale, a luncheon and a silent auction. It might be just a bunch of white haired old ladies, but I see it as an opportunity to meet some new people. Ruth Gene is one of my favorite people and if there are others like her, I want to meet them! I'm looking forward to it. Then we also have a FAMILY (all of them) wedding tomorrow night. Our babysitter (my neice) is sister to the groom. That means tonight is rehearsal dinner and wedding tomorrow, and she's in both. Which means I need to pick the boys up early so she can make it to both functions. Looking at a busy day ahead. Hope I feel good all day. I upped my remodulin on Tuesday morning. I had two train wreckes that day, but none since. hooray! yippee!! Hope it lasts today. But I've noticed when I get any stress, the train comes to town. We'll see. Hope everyone has a great weekend. It's finally supposed to turn cold here, but it is 65 and gorgeous so far. Hard to be sad on glorious days like this.
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Monday, November 10 2008
Cleeming up
It's almost 10 in the morning and I can hear the little darlings playing and jumping in their cribs over my head. They are making growling noises too. I'm sure Erin would love it if I went and got them up. She had a date last night and today is her day off. Oh well. I had them the week Baby Daddy was here and then last Tues, when the babysitter got sick, and then everday at 4:30-6:30 until Sat. So I think I've done my share of caring for the wee ones lately. She can do it herself. I've paid my dues. Both boys like to help "cleem up" their toys and throw trash away. Awesome, since their mom and dad are pretty slobby. If they keep going like this they might have a tidy house. Anyway, I've set a goal for this weekend to have a garage/yard sale. I know it's too much work so I'm doing it as simply as possible. Until now I've just given things to whoever calls and comes to take it away, but I have some things that might sell and I'm ready to cleem up! I went through the linen closet yesterday and in about 15 minutes had a huge bag of old sheets and pillow cases to go. We don't have any queen size beds so cleem up the sheets. If we get one, I'll get new sheets. Out with the old! I'm sick of knowing I own something and having no clue where to find it. Or of finding things I forgot I had! After living here 16 years, there's too much accumulation. It would be nice to have to move every ten years just to clean out and start over. So I'm being brutal. I must attack my two closets of clothes. I don't work anymore and it is just so hard to get rid of favorite clothes that you know you'll probably never wear again. So, I'm going thru every closet until I can get into them again. Erin's crap doesn't help. It's in two of my best closets. One is my craft closet and I can't get in there. I've cleaned it out about three times since she moved here. Her closet in her room in now half empty, so we can put stuff there. But she won't put anything in there she might need after the boys are asleep because she doesn't want to wake them up. But I be we can find some things to put in there. I feel good, too, that I've done my part for PH Awareness. We had our Funwalk Saturday. It was great! For our second effort we raised close to $12,000!!! and had a lot more people, and better food. I got my picture and an article in the paper, so now I'm famous! lol And Sunday I set up my display at church again. I walked away so people would feel comfortable going up and reading or taking a brochure. And I mentioned our Houston transplant phriend in the prayer requests. If I keep at it, maybe some people will take notice. I still plan on sending a letter out to family and friends and attaching my story if they want to read it. I don't think many of them know of any details, so I want them all to be well informed. The blogging is great, but I don't blog (love to read them, though, Nancy) and so I can reach a lot of people this way. I want to word it so that they might forward it and educate others. OK, I'm off to battle the STUFF. Have a great day.
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Friday, November 7 2008
PH Awareness
I can't believe I lost a whole entry. I was trying to attach pics and it wasn't working, so I went to HELP. Then Poof! all was lost. to recap: Tired after a week home with Baby Daddy and the boys. He left Monday morning. Babysitter got sick and I had to sit for them on Tuesday. Now the old sitter has them for the last three days, but I still have to go get them at 4:30. Just in time for my head or body aches. Been busy with PH Awareness. Got my proclamation Tues nite. and tomorrow is our Funwalk. I've raised over $1100 for it. WOO HOO! Taking it easy today. BTW, has anyone else lost their ability to type? This is driving me crazy! Wrong letters and do overs constantly. My brain is going. mb
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Thursday, October 30 2008
Busy Week
Well, it's busy week here. Baby Daddy came in Monday nite from Nashville. He walked in and Caleb took in a breath, smiled and yelled "DADDY!!!" Cute. So he still remembers him from July. We took them to the FW zoo yesterday. I hadn't been there in a few years and it is as beautiful as ever. It was a gorgeous day and you could see the animals very well. They were near the edge. That is one of the nicest zoos in the country. Always has been. BD cooked stuffed manicotti night before last and made a scrumptious sweet potato casserole last night. I'm glad he likes to cook. As soon as we got home from the zoo, around 5:30, I felt my freight train a commin'. I was sick for two hours with it, hurting all over. So I make Chris cook. About 7:30 it eased up and i was ok the rest of the night. I took my tramadol and everything. So today I'm taking it easy. I'm gearing up for the City Council meeting on Tuesday. I get that Proclamation from the city declaring November PH Awareness month. And I have a table display for Sundays at church. I'm going to get the word out! I'll think a little larger next year. Oh! and Nathan Barker, at PHA, is doing an article on me getting the proclamation! So I'll be PH famous! haha. I thought it interesting that Nancy got her picture in the Pathlight and they cropped me out of the pic! No fair! So I'll have to get one of my own.
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Thursday, October 23 2008
Life at the Beach
Gosh, I almost feel guilty for writing about this, since you all seem to be having a difficult time with life right now. I've been there and this is my week in the sun. I'm at South Padre Island in a 4th floor gorgeous condo overlooking the beach. The weather has been fabulous. Yesterday it even got up to 90 and I got in the water. I can see the sunset from the balcony this time of year. Until today there were no clouds, so I've been soaking up the atmosphere as much as possible. I wish I could bottle it and take it home. It occured to me today that all PHers should be able to breathe fall ocean air. It is so easy to breathe and relax. You can almost forget that you are sick. The only hitch has been lack of access to a wireless network. We usually have the Radisson next door, but it is barely open since Hurricane Dolly. Tonight is the first night I've been able to get on and it probably won't last. Yesterday I went down the street to an internet cafe. So I won't rub it in. We leave tomorrow. But I've tried to keep my eye on what's going on and the depression issue buzzing. I have two cents to put in, but don't know how long my internet will hold out. I've been taking a tramadol at noon and again at 6 if I feel symptoms coming. It seems to help so I went up again on the remodulin at night and I can breathe easier. Well, I'll talk to ya'll next week. Gotta go eat cold boiled shrimp (right from the boat!) I cooked them earlier so we'd have a feast tonight. Love ya'll.
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