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Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.
@peggy1944, thank you for responding to @bflattenor. Did you also know that you can check your discussions, posts and notifications on the website as well? If your email is now working, click on VIEW & REPLY at the bottom of this notification and you will be brought to the discussion on the website. This way, if your email is deactivated again, you can still check your messages and discussions. It is also a bit easier to see the conversation and everyone's posts a bit easier on a webpage as well.
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Hi Justin, and thank you for responding! Yes, I have already been a member on other sites on my computer. But not recently. I've been sick for almost 2 weeks with upper respiratory infection, ear infection. Always wanted to start a conversation about how older cleft palate/cleft lip craniofacial deformities survivors have coped many years after their initial surgeries. Like surgery in the dark ages. I did not fare well. Thanks again Justin, and have a great holiday! Peggy
Dearest Peggy, I'm sorry to hear you are having so much pain.Most of my pain is only when I am trying to walk,and since the B-PLL is making me want to sleep most of the day that's not so much.Your reference to a boat "hit me where I live" ; since I am almost a life long sailboater…..anything from 8ft.to 36ft.I've owned and sailed them all. Living on a lake makes up for that loss.
Dear Barbara, thank you for all your kindness in responding to my post! I understand just what it is to need sleep, it is my middle name. OMG, I am scared to death of anything pertaining to boats and water!! Terrified, not brave like you. I can't even drive over a bridge with water under it! Get panic attacks at the thought of being forced off the road into the drink. Oh well, Barbara, I am so happy you lived your life with what you truly love! Gotta go, and Happy 4th!
I was not always brave when it came to water. When I was 8 yrs old I lived in Petaluma for a short time. My 10 yr old sister had a friend who lived on the other side of the river.One day we were going to her house which meant crossing the draw bridge. They walked across and turned around to find me still on the other side.My sister was not very happy with me; so I tried to get a little braver. I looked each way up and down the river and saw no boats,and the cars were still driving across;so I ran like a thief ! I have no recollection of how I got home. I've had to call on that bravado a lot in the last 6 yrs.
Barbara, I'm so sorry to read you were let to go down to Hgb 5.4. Truly you are brave to have to go through this, and I'm so glad you got the transfusion in the nick of time. I hope you are able to enjoy going for walks again without so much pain and that you have energy to enjoy things in life. I wish you a Happy 4th of July !
I went to the lab for my scheduled appointment. I expected it to be low, but it was 6.3—it's not that easy to guess. Now I have to arrange either a Tues. appointment,and someone to meet the Meals on Wheels, or try to get a Monday appointment; so I can be home.Nobody said it was going to be easy.The 4th was beautiful,thanks to my neighbors who ignored the law and shot fireworks over the lake.
I was given 1 bag of blood since the reading was so high(?). I read mostly the hgb,but the Dr.may be relying on the whole picture.Now I will need to go in every other Sunday for LAB work. I'm starting to feel like a burden on my friends.
Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to reply, been laid up but now back to the usual. Haven't looked through the posts yet, hope you are coping OK with your journey. What a courageous person you are! Your experience with crossing the bridge is a great parable. Just tie another knot and hang on. I was not quite as successful facing a scary water problem when I was also 8; my father wanted me to cross a lake with him in a canoe! Was so terrified I almost passed out cold. No bravado there. Well, that's water under the bridge! Let me check my posts later, and Barbara, you really give me hope for the future! Peggy
Did't you mean WATER UNDER THE CANOE????
Don't mind my sense of humor; it is extremely warped now. Another test next Sunday.
Oh Barbara–I am absolutely sure you are never a burden on your friends!! They help you because they WANT to. Real friends stick with you more than family, this I found out the hard way. True friendship is a gift from God. Sorry I took so long to respond, and hang in there. Regards, Peggy
OMG, water under the canoe, just thinking about that incident scares me to death! And I never did cross the lake, ugh.
Dear Peggy, How are you doing? We haven't heard from you for 3 wks. Are you doing the guinia pig thing for them again? I had my usual 2 bags yesterday, and found out what was meant by not being able to handle it when I was given only one bag. I was retaining fluids and too much would be dangerous.After my driver friend left at 8:30 i must have just thrown myself on my bed;only to awake 14 hrs later. I found doors open and lights on all over the house.After setting things right,I slept another 12 hrs. Years ago I did the same thing when I was exhausted moving into this house only to wake up to find the neighbors cat sitting by my bed watching me sleep.
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