Coping
Patient and Caregiver Diaries
Patient Diary -- Marcia Beverly
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We're all in the same boat
Well, I don't know where the menu went to change my font and color, but I guess this boring black typing fits my mood. I hear what all of you are saying and feel the same way. Except for my fantastic doctors, who take great care of me, I agree with most of what you say.
I'm stable. I can do a lot of things. I've been on this remodulin trial since Oct of last year. It made me feel fantastic for about a year. Last Tuesday I finally cut back to 5 mg in the morning because I had gone 4 weeks (except for 2 days) having horrible afternoon Side Effects. I just couldn't take it any more. So finally since Friday I have not had the bad afternoon. It got so depressing because I only had a half day each day in which to LIVE. I still don't have energy. I'm very disappointed in yesterday. Here it is Easter, but there was toooo much on the plate. I've been singing in the small choir, which means I show up early on Sunday morning, rehearse and we sing a song for the 10:15 service. EZ Then all of a sudden it was Maundy Thursday service, with 6 pm rehearsal. And 8 AM on Easter morning, and singing in both 9 and 11 o'clock services. Then somehow eat lunch, which I wanted to be nice because it was Easter. And then be at Grammy's house at 2 with dessert in hand for the little kid Easter egg hunt. I crumbled...I didn't do any of it. The boys weren't feeling good, which gave me an excuse. But I didn't even make it to church, whether I sang in the choir or not. I'm just bummed because I knew I couldn't do it all and so I did none of it. I did fix the boys eggs and baskets and hid them in the house for them to find Easter morning. The weather was stormy too, which didn't help. ANd where was their mother, you might ask? Well, her 25th birthday was Friday and she's been celebrating since Wed nite and was out at her birthday party Sat nite. I had something to do every nite last week and that takes it's toll too. Instead of looking forward to getting out to see other people, I was trying to survive going out after a horrible bout with the Side Effects and zombie like state I get afterwards.
All of this adds up to not socializing like I want to. I would love to be able to drink with my friends and visit too. I've gotten where I don't even know what to talk about. I don't even care any more. I'm tired of looking fine, not feeling bad, but not feeling great (or even good). And when the side effects hit I just feel like crap and it's not the PH, it's the medicine. I don't know if it's mental or I just need a kick in the butt to go get some exercise and build my stamina. I do wish I could find something to stimulate my mind so I'd have something to talk about and be a little more interesting and fun to be around. Right now all I know is toddlers and PH. UGH. Nobody wants to discuss that stuff. I'm boring and I used to be a helper in being the life of the party. I don't like the hat I'm wearing these days. Even my husband brings a book to the table when we do sit down and eat once in a while that I feel like cooking. And I have no imagination for cooking. If I feel bad, forget it and that happens a lot. Sorry to ramble. I'm definately feeling depressed and fighting it. I really haven't felt this way since dx. I've always been able to find something worthwhile and now all I find is apathy.
I've Reached my Limit
Again, I've lost my menu for the fonts and color. What's up with that?
It's almost 3 AM on Saturday morning and I can't sleep. for the first time I'm having one of my "attacks" at night. I felt it come on about midnight (which is early if this were daytime) and I took a tramadol and layed in bed for over an hour before giving up to watch TV and take another tramadol. Then hubby came to bed and I don't want to disturb him so I got up. I can't describe the pain right now except to say I'm up around 9 all over my body. I go in for a tuneup on Tuesday and this will be the main topic of conversation.
I hurt too much to write anymore. I'm just trying to stay occupied until this pain subsides. ugh
I'm Still Here!
Well, it's time for me to check in. It's been a while. BTW, what happened to our font and color choices? This black and white doesn't fit my mood.<br><br>I was having a really rough time of it with the oral remodulin side effects. For about 2 months straight it was EVERY afternoon and I was also sick of my daughter arguing and yelling at me when I provide a free place to live. So I didn't do much of anything and was really getting into a funk. I went to the doc three weeks ago and we went down on the remodulin and doubled the pain med. A week went by with no change, so we downed it again last Tuesday. Saturday I didn't get a reaction and Sunday was mild. Yesterday was another three tramadol day, so we'll see how it goes. <br><br>Also, my chat buddies were going to get together in Houston and we managed to have 5 of us there. I knew I needed a spirit boost and I love roadtrips, so I hopped in the car and went. Our phriend, Cathy, flew in from Calif. She had gotten sick last year during conference and still had her plane ticket to use. I'm so proud of her because she uses this big honkin' wheelie chair that even has a ramp to use with a pickup! It's the size of a small VW and can go as fast. She just needs headlights and a horn! AND she came by herself! She's on IV remodulin, cooks authentic Mexican food from scratch and loves to bead jewelry. Jen, our other phriend from Seabrook, picked her up at the airport (God bless her husband!). She uses a wheelchair too, but we couldn't take Cathy's chair anywhere so any car trips had to be not far to walk. Jeannie, whose house we stayed at, had a walker with a seat, so that worked out fine. But it was a hoot going to the grocery store with them in two scooters and me following with the basket. Jen had O2 also, so we made quite a sight. We even went shopping to Sam Moon, which is a big store with purses, jewelry, tiaras, hair accessories, etc, cheap, cheap. We had fun and Cathy could manage with just the walker. They cooked too and that was fun to see her zipping around the kitchen in the wheelie and trying to find enough cooking utensils since Jeannie doesn't cook! Anyway, Edna came from Ft Worth and we laughed and ate and laughed and napped and laughed and ate some more. VERY good for my frame of mind. And I was the most mobile one there, which about wore me out!<br><br>Erin got a big tax return and decided to use some of it to buy big boy beds for the boys. We got a bunk with a double bed on bottom. Instead of a ladder it has stairs with drawers and the other end has a dresser. It's cool but HUGE! Almost didn't make it up our stairs and I don't know how we'll ever move it. I'll try to include pics of all of the above. They are on FaceBook too.<br><br>Next phriend on my list to meet is Miss Bailey at the end of May. So Bailey I'll be emailing you with details so we can rondevous. That ought to perk you up! Plan on lots of laughs and symbolically all our diary phriends will be there. I love you! Alex, you move a year too early!
With our SOB shirts, Me, Cathy and Jen
Jeannie and Edna
Weekend fun and medical issues
Well, first of all I had another fun weekend away. This time at Lake Granbury. It's a beautiful lake with cliffs where homes are perched. My ChristCare group had it's annual retreat. Lots of relaxation, laughter, drinking and boat rides.
I was still having bad afternoons up until Wed. I asked the pharmacist about taking more tramadol and got the OK, so I took a fourth one that day. Then my study nurse called while I was still at the grocery store. Even my shins were hurting. Stupid, huh? So she said if more tramadol didn't help to go ahead and decrease the morning dose AGAIN. So, Thursday morning I went down again, but put that little pill into the night dose box. So I'm now at 4.5 mg in the morning and 5 mg at night. I haven't had a bad afternoon since Thursday, so Hooray! maybe we hit on a solution!
Wed nite I had a scare. I was trying to get the boys to settle down in the new big boys beds. It was dark and I kept seeing a flasher. That's a very bright spot of light and usually means trouble with the retina. It was in my good eye. My right retina tore and detached 13 years ago, so I only have partial vision in it and I knew this flasher meant trouble. So Thursday I get an appt with the opthomologist at 1:30. With the resident. He dialates and looks and looks, then the big main doc comes in. I had seen him two years ago about the cataract in the bad eye and got the impression he wouldn't touch it. My vision just keeps deteriorating, which is depressing. So, anyway, he talks about laser zapping this spot (commonly done to strengthen the retina, if needed) and calling in a retina specialist. Now, the whole time I'm thinking, I should have gone to see Dr S. (my original retinal specialist and my hero). When this other retina dr is stuck in traffic and I'd been sitting in that chair over two hours, I called my hero. He said come on over. So in 20 minutes I was in his office with his awesome staff. He took a quick look,(as opposed to the llooonnnggg looks at the other DR), declared it to be a bit of vitreous that had broken off and come back in a week. He also said he had a cataract guy for me, that uses local anesthetic and in and out fast. But have to wait 3-6 months for this other issue to resolve. So again, I'm in good hands, confident with my doc, and have hope of getting this cataract fixed and getting rid of the thick, heavy glasses. Hooray! I'll never go back to that other doc again.
Hope all the mother's out there had a great Mother's Day. My youngest took me to a cool patio restaurant and we visited for three hours. It was so nice.
A New Battle Plan
Every time I come here I look for my menu to change color and font. It has been missing in action for several weeks. Does anyone else have this problem?
Well, yesterday I went back to the doctor for another assessment of where we are in this side effect mess. Taking more tramadol and/or hydrocodone didn't really help, because even if the pain went away I wasn't good for much after that. I finally had to back down on my dosage. I also checked with the opthamologist about taking revatio and got the A-OK.
Sooooo, in 3 weeks, after I get back from the beach I will start revatio. I didn't want to risk the headache that comes with starting it while on vacation. I can back down to a lower dose of remodulin, helping the side effects reaction and the revatio will pick up the slack on the PH symptoms. Sounds like a plan to me....hope it works...
Bailey and I have a date for 6ish next Wed evening. I'll take lots of pics for all of us to share. She's a very special lady to allow virtual strangers come to her special home and then we'll go out to eat and celebrate everybody! You will all be in the Hill Country in our hearts. It's so strange to think about being virtual strangers when we've "known" each other for over three years...But thank goodness our computer has brought us all together. Can you imagine how lonely it would be without all of you to visit with? Ya'll are a very important part of my life and I thank God we found each other. (((hugs)))
SGWW 09
All is quiet here on the Dallas front. A gentle thunderstorm just passed through and awoke me in my own bed. Love my own bed after a week elsewhere. Home from the beach. Company gone. Children gone. Everyone gone except the dog and cat. And a nice, dark day to read a book. So nice from yesterday when it was in the 90's, sunny and oh so hot.<br><br>As you know, last Wed Bailey and I got togethter and had some fun bonding time. Dinner was fabulous and since the next day was her birthday, we toasted to her too! I didn't realize she was so nervous about meeting us, but all went well and I'm not finished with her little town. There's too many good shops and "stuff" to look at! So I'll be back. It's only about 4 hours away and an easy drive if traffic doesn't get in the way. Since we go to Austin so much in the fall for football I'm sure we can squeeze in some visits. We couldn't get my camera to focus in the dim light, so our fuzzy pic is the best we could do. And I got to meet the donks and snap their pics. Short, sweet visit. <br><br>Then off to South Padre....Fabulous. all I can say. We've been going for 30 years and it feels like home. I just wish we could go more often. All the sisters flew but I didn't like the way I felt last year in the plane and my ankles were swollen all weekend. I'd rather make a 9 hour drive than worry about ankles, swelling and chest pain and oxygen. I've changed the times I take my medicine and still had a couple of bad attacks at night instead of afternoon. I'm working on that. We still may start revatio next week. We'll see.<br><br>I'm going to try to include a group picture of all the siblings at a pizza/piano place we ate at on Friday. They sure had fun singing to every song. I was having a attack and just kept popping pain pills, but it was pretty darn funny. One sis had purple t-shirts made up with Beverly-SGWW over the left breast. Sisters Gone Wild Weekend. I guess Steve was one of the girls....lol<br><br>The Tennessee folks seemed to have a nice weekend. They had plenty of room and did some fun stuff with the boys. Their 6 month old half brother think they are the greatest! And BD got lots of quality time with them and his mom and wife. We got home Sunday nite and just went next door to sleep. They are our best friends and it was much easier than trying to play musical beds and stumble over all the suitcases. We slept in a nice quiet place and just rolled our suitcases home next day. Kinda weird, but it worked. So, all is well, and I have my house back to myself to relax and read and relax some more. <br><br>I wish all of us could get together at one time, but for now we just piece it together to make our own quilt of memories. Cheryl, SF is definitely on my list and Steve wants to come too! That is our favorite city so far...Next planned trip is late August to Seattle, via Vancouver. Jas James (from PHA) lives on Vancouver Island and we plan to get together with her. My brother and family live in Seattle. It's been SEVERAL years since we were up there, so it ought to be fun and get out of this Texas heat.
Fuzzy Bailey and me. Wish we had one in focus!
Bailey's donks. Her chickens were cute too!
The siblings. Aren't we a beautiful bunch? Guess which one is my husband!!lol
New Angels
Wow, what a week. Last weekend was a vigil for Mason, who lost his battle with PH on Sunday afternoon. I could feel it coming. I did't think he had much fight left in him. He'd had to wait tooo long for the lungs and his body was just worn out. He was so brave and was very subtle in letting us know the end seemed to be near. Fortunately, Cathy, a phriend in LA, was able to get up to the hospital and tell him we all loved him. He was unconscious, but I know her message got through. He let go 10 minutes later. This has rocked our world. He was such a special guy.
Yesterday I decided to drive out to AZ attend his funeral. Cathy will be there and needs support, Ellen is flying from DC and is a rock for all of us. So many of us want to go, especially Colleen and Merle, but they can't fly or take a long trip like that. This year I made a mental bucket list and told myself if I had the strength and felt good, I would live life to the fullest, go places and visit phriends while I still could. Seeing my cousin in Phoenix was also on that list. SO, I made the plunge and I'm going to AZ. Ellen and I will share a room. We'll be there to comfort Cathy and other PHriends, his family and loved ones who couldn't travel or take the heat. I so wish we could all be together to comfort one another, but it's not possible. So I want to be there for those who cannot.
Then, we lost Ellie Neville last night! Oh my gosh, this is getting to be too much! At times I think if I did not attend the posts and check the boards, I wouldn't have to deal with this, but there's no way. The only way I feel useful is to try to do my best to educate and comfort those around me. And Lord knows, they comfort me when I need it. So it's a mutual sharing and pain, but I wouldn't give it up.
An old friend, who I haven't seen for a long time was talking to me the other day. She told me not to spend too much time around the PH community and keep active in other ways. It was hard to answer her. Between IM, chat, FB and email, I am surrounded. So I do think I need to do more "other things" to not focus on this illness. I'm making a mental note to find more other things to do. Actually, although this trip is focused on Mason on Saturday, I get to make an adventurous road trip to see my cousin, in my new car, and meet new phriends, plus visit a place I'm never been to-Lake Havasu. Colleen, Merle, Jen and all the other phriends will be right along side me. I may never get to do something like this again, so while I feel good, I'm going for the gusto. If I'm crazy, so be it. What's 1200 miles between friends? Of course, this means you may be next on my list of pholks to visit! So watch out and be nice! lol
BTW, my dosage of remodulin has settled into a groove. I've had four days with no pain or headache and feel good. So maybe we've found the magic combination here, at least for a while. I'll take it.
PS. There's a lot of nothing between Dallas and Phoenix, so if you get a phone call Wed afternoon, I'm calling to have some company. Got a book on CD and the IPOD charged...lol
The Trip
Yay, my color and font is back! hoooray!
Arrived in Phoenix yesterday with much time to spare. I felt like it was 4, but it was only 2 here. Had a great visit with the cousins and I'll head out today for Lake Havasu. London Bridge and all that. We were concerned about the temp, but both Dallas and here are predicted to get up to 104 today. Phoenix is MUCH better to have 104 than Dallas with all the humidity. Here I can breathe, although I'm fighting dryness-lips, skin, nose. Bring on the lotion.
I'll check back in after Mason's funeral and let you know how it went. There will be four of us PHers there representing all of us. His mom will be pleased. If anyone has any pics of Mason, his mom wants us to do a collage.
BTW, I had a cardio visit just before I took off and he said I looked and sounded better than he's ever seen me. woo hoo! So I'm going for the gusto while I have a window of opportunity. Still no attacks. yay!
Still in Arizona
I'm still in Phoenix. The cousins talked me into resting a day and going home tomorrow. It's good to relax after the turmoil of the last few days. So I'm resting and ipoding and pool later. Only drawback is that it is 109 outside! But I'm taking it easy and have my O2 with me for nights. It helps. I'll update when I get home.
I'm Home
I got home safe and sound about 8 pm Central time. I got so confuse with Az being on Pacific time! that last 500 miles was a tough one. I still have no feeling in my rear end, but I'm so glad I made the trip. There is something purging and theraputic about road trips. And you appreciate home so much more. I just wish it weren't a holiday weekend coming up. I really want to do nothing and I don't think that is an option. And Erin has 4 days off, so they'll all be home or she'll wants me to go do stuff, like go to the pool. I can't think about that right now.
I know Mason was smiling when I was speeding down the road and he especially liked the 80 mph speed limit in West Texas...
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