Weary Wednesday
Good Morning OFF Family,
I have been up most of the night. First, I had trouble winding down from being at the zoo last night till almost 9:30. Class ended at 9:00, but I had stuff to take care of with one of the instructors. Now, Utley is starting to wind down from some sort of anxiety attack. At first I thought it might be a thunderstorm coming. Then, I thought it was my smoke alarm chirping. I finally got the battery out, and gave him some Benadryl, and took some myself, and he is just starting to try to sleep, though he is still breathing heavy, and his heart is pounding. He isn't panting or trembling though.
Pray I have the strength to get through today. First, I have babysitting to do at church in the morning, for Colleen's Bible study. Hopefully, the hour and half go fast. Then, a quick bank run, and to the IGA, to cash in my soda cans and bottles. For those who don't know, Michigan has a 10 cent deposit on soda. I am sorely addicted to Diet Coke and Diet Squirt. After that, I'll come home and take a quick nap. Then, I have an appointment at the YMCA. My last one had to be rescheduled, for babysitting duty at the last minute. After that, I have to go to the church for the children's program.
I won't know till later in the day about Baby Natalia. I'll let you know when I do. Thanks for praying.
Vickie, I'm praying your surgery goes smoothly. No time like the present as far as the timing.
Connie, we miss you, but know you are in good hands in Oregon. Hope you're not experiencing much pain, if at all.
Mary Gee, starting therapy is a great idea. As far as your SO, stand your ground.
Eileen, enjoy your warm temps, and day off, if it's still your weekend.
Judy, I'm sorry you're having trouble finding someone with a strong work ethic. I agree with the suggestions about high school work study programs.
Francine/Twinkles, hope I remembered your name right, I am proud of your exercise regimen. Friend me on Facebook, Patricia Anne Reill
Debbie, I miss Carmel/Monterey. Haven't been back in California since 1977. Not sure I'll get back that way again, as my travel budget has been devoted to visiting kids and family now.
Maui Karen, I miss your posts. I hope all is going well with getting your belongings shipped to you from the island. I also hope that the health issue is resolved soon, if it hasn't already. If you're on Facebook, I'd love to Friend you too. Patricia Anne Reilly.
Jennifer, I'm praying your treatments are going well, and that you are able to rest. Please tell us how we can pray specifically for you, if you're up to a brief post. If you're on Facebook, Friend me.
I'm sure I'm missing people. Forgive me.
Hugs,
Trish
Albert Schweitzer
Good morning Trish!
I thought I was the only early bird this morning, but I see we are both up. I am praying that you can not only get through your day, but sail through it with flying colors!
So, I am NOT having surgery today. I had a hella day yesterday. It's all because of this stupid Von Willebrand's disease. I'll just call it VW from here on out. I was on the surgery schedule. Dr. F (the plastic surgeon) did such a great job of pushing it through BCBS (insurance) and I squeezed in all the necessary hospital pre-admit stuff, the EKG, etc. yesterday before my 2 o'clock appointment with her. But then I had to tell her about the VW.
I explained that I only found out about it on Monday, and she understood, but she called and talked with the hematologist and they both decided it was too risky to do the surgery until I have this "trial run" with the special clotting medicine on Thursday. So we cancelled everything at the hospital for today's surgery (which I gather is a big deal and something that surgeons do NOT like to have to do, but she was quite gracious about it). I do go to the hospital tomorrow morning at 10 a.m. to have this infusion of medicine and then more blood work to see if it raises my clotting factor to normal. If all goes as hoped for, perhaps I can have my surgery next week.
Okay, so as far as this testing goes, I understand the need to be prudent and cautious and make sure they have a viable treatment plan for the VW. What got me upset was the PS's attitude towards VW disease. She told me point blank that I could "bleed out and die" from it. Yikes. She also said that VW is quite rare. Well, hell. The hematologist told me that VW is "not uncommon". I realize that in her field, the hematologist is likely to see more blood disorders than the plastic surgeon, but it's a lot to deal with. For me, anyway. I've never had a chronic health issue before. I've never had any kind of disease. I'm having a little trouble processing the fact that I do have one now.
Also, VW is primarily a genetic disorder, which means I could have passed it onto my girls. They all keep asking me if my parents had it, which as far as I know, they did not. It's possible to have the markers for it and not actually have VW, but you can still pass it down to your offspring. So Carrie and Chris need to be tested for it. Wow, talk about a burden of guilt there.
Well, so, Butch and I had quite a discussion about it yesterday evening driving home, and I got upset with him for his flippant attitude about it. His whole idea is that it's no big deal as long as I can get the medicine before I have surgery. To me, it IS a big deal. It means that I can never go without health insurance again, which worries me as it is going to be such a major expense for the next 8 years until I can go on Medicare. And it means that I do not want to move off to a 3rd world country like Belize with some kind of rare blood disorder.
Butch said (idiotically, in my opinion), "I have diabetes. That's a disease." To which I said, "Yes, but diabetes is known world wide and the medicines for it are readily available world wide."
I think this is the area we disagree on the most. To me, I feel I am relatively safe as long as I am in the U.S. with hospitals and doctors who are familiar with VW and have access to this specific medicine. If I have a car accident and need emergency surgery, I think it can be handled here. But if we move off to Belize, who knows what could happen to me there. Right? Butch said (yesterday) that if I need surgery again, we'll just fly home to the states and have it done. I think that's a totally stupid attitude. I mean, nobody plans to need surgery, but **** happens.
Well, no doubt I am over-reacting some right now, but I need to fully understand this disease and how rare it really is and if the medicine is available world-wide, etc., etc., etc. (But he did hurt my feelings a bit yesterday and I told him so!)
Let's see, on other news, I did go for my annual WLS check-up first thing yesterday morning and the doctor said I had the best labs he'd seen in the past 3 months. So hurray for that! I am taking all my pills daily and I'm in good health, as least as far as WLS goes.
Nothing on my agenda today, which is a good thing. I'm behind on the laundry (oh, how I am waiting for the day when Chris and the boys move out, and I don't have to do all their laundry too!), and I want to play in the dirt. I need some gardening therapy. And I just need a day to decompress a bit and process all this crap that is happening. I've been up for over an hour already because I just could not sleep for thinking about everything. I know it does no good to worry about things that cannot be changed. "Sufficient unto the day is the evil thereof", which I believe. I also know that God is in control. I mean, look at how I got the results of my bloodwork before I had another surgery. I know things are working out for the best. But I still need to think things through and get it all right in my mind. And my damn mind won't shut it off right now. Grrrr. I may have to vent about here more than just this once before I get it processed.
Sorry to go on and on about it this morning. It helps to write it all out. And I will get a medic alert bracelet, as y'all have suggested. Trish, I will look up that company you suggested.
I would like to respond to each one individually as Trish did, but my head hurts and I can't think right now. Ditto what Trish said to each of you!
Love you all!
Vickie
Vickie,
VW is a big deal; however, you should still be able to move to Belize. They have very modern hospitals with hematologists there too and once they do your clotting test after the infusion of DDAVP, they will know exactly what dose works with you and, more than likely, they will give you a DDAVP inhaler such as the one my daughter has. It is genetic, but I was only a carrier so it is possible one of your parents, probably your mother, is the carrier and you have the disease. And if it is recessive, your daughters may luck out. None of my daughter's kids have the disease but that doesn't mean their kids won't have it. Of the three types of VW, it sounds like you have the least aggressive, which is good. But you are right to scale your disease a little more complicated than diabetes. Once you are tested after the infusion, you will know more about it and the seriousness of it. Chances are your girls are fine so stop beating yourself up. I passed my immune disease down to my daughter and two of my grandkids and I hate knowing that they have rheumatoid arthritis through my genetic contribution. But in the end, we did nothing wrong to get the disease so it is not our fault. Good luck with the tests.
Thank you Jeanne. I read both your responses with interest. I've been doing research on-line for the past couple of hours, reading about VWD. The hematologist did mention the inhaler, so I will check with her at my next visit. I have a lot to learn before I feel comfortable dealing with VWD. I'm the type of person who has to read everything there is to read about something before I can finish processing it. But first hand accounts also help a great deal. I appreciate you writing me about your daughter. I'm sorry she has it! And I will make sure my daughters are tested for it.
Vickie
You are welcome. My daughter is 37 years old and has learned to live with this disease. For her, excessive bleeding during her periods and frequent and excessive nose bleeds are where she has to have the medication. In fact, she was diagnosed when she was 11 and had her first period. She bled and bled and bled. Her pediatrician put her on hormones and that didn't stop the bleeding and after two weeks of menstrual bleeding, her nose started gushing; we flew her via helicopter to children's hospital and they were pumping blood in as fast as they could and finally a hematologist came in and ordered the IV DDAVP and it slowed it down. She was in the hospital for a week and they were able to give her treatments there enough to stop her menstrual bleeding and over the course of the next two years, we learned what worked, the dose, and even how to stop prevent the bleeding episodes from starting. She had bleeding problems after each of her children's births but it was easy to control with the medication. The more you read, the better you will be able to handle all of the new information that will be coming your way. It's rare for boys to get VWB disease but it does happen, so your daughter will probably need to get the boys tested. If they have been circumcised it is likely they don't have it or if they do have it, they have a mild form because they probably would have bled a little too long after the circumcision. As my mother used to say, if it ain't one thing, it's another. You are strong so I don't doubt you will handle this like a pro. The one thing we all now is that knowledge is power.
Good morning Trish and everyone......
I am on my phone so just checking in. I have been reading everybody posts but haven't been able to reply. I hope to get to the library in the next day or so. I haven't been able to do much. I just hate typing on my phone.
I am having a great time with my granddaughter, Amanda and Tyler too. They are so sweet.
My pain is out of the roof. It is so damp here. It does rain some almost every day. Cold at night and warm during the day. Too much fluctuation for my body.
However we are having so much fun!!
Prayers for you Vickie, Trish prayers for your family too. Judy sorry about the new kid, prayers for Jennifer and Maui Karen and all you amazing OFF family!!
Much love and bunches of hugs......Connie d
Hello my OFF friends.
I have read all the posts. Great info on VW for you to consider, especially from a real experience perspective.
Ever have one of those day when you realize halfway through you should have just stayed in bed. Well, i am having one of those. I didn't go to the gym today and that was a huge mistake. I got up late and decided to take a long shower and wash my hair. I know that doesn't sound like much, but it is still a one hour endeavor for me. Especially get my hair fixed up, but it is good for the week now.
Anyway my nerves have been on edge most of the afternoon and my roommate is driving me nuts. She gets all weired out by things like my working out or being on my phone/computer. Some days i realize i should just go to my room i am so cranky. What you have to know is my roommate is and information junkie. She ask a million questions about everything and she gets stuck nd sometimes a little obsessive about it. And sometimes she thinks i should be able to read her mind... Ok it is enough b****ing.
I can't remember if i said, but yesterday when i went to the gym, i did 54 mins and over 4000 steps on the nu step. Also my weight is down another half pound today.
I think i am going to go to my room early so i can have some private time.
You are each in my prayers.
Blessings,
Francine
