I'm going away for a week

Hey All:

I'm going to go on a small vacation. This coming Sunday I'll be flying to Florida. I'm going to go my dear friends house. Debbie and I have been friends for over 20 yrs. She and her hubby, Jay, want me to come to their home and allow me to be pampered and waited on. I'm not really feeling up to flying but she's got time off from work and my doctor said it may do me some good, to have different sites to see.

Speaking of my doctor I saw her yesterday. She's feeling that I'm just hanging in there status quo. She realizes that I feel terrible everyday and that I'm frustrated beyond my limits. I'm anxious to get things moving along so that we can begin looking for a donor for me. This waiting game is enough already, if you know what I mean. I'll be getting another CT scan on the 5th of Nov and if my blood clot is gone, my internist will contact my rheumy and see if he'll agree to the humira to treat my RA. We changed my blood thinners from coumadin to lovenox shots. So I'm giving myself a shot twice a day instead of having my INR all over the place. I may need some blood before I head out to Florida on Sunday. I'm expecting to hear from the doctor tomorrow, if I need to come in and get a couple more units.

Anyway, I just wanted you to know that things are basically status quo and I'm just sitting around waiting for my MDS to worsen. I'll think of you all while I'm gone. I'll be back home on the 3rd of Nov. I'll miss you all and I hope you all have a good week next week.

Love ya,
Barbara

Oh Barb, this is great!  I hope you have a lovely time and can just relax and breath in that fresh Florida air!  Take care my friend and we'll chat when you get back!

 

Ginny

Hi, Barb. This sounds like such a great opportunity for you to just relax and be pampered. You deserve it! Take full advantage and ENJOY! We'll be waiting to hear all about it. Definitely take Carol's advice about informing the airline of your need for a wheelchair. Give them the heads up so they'll be ready to help you. I used that service when I went on a trip with my mom a couple of years ago, and now with all the crap they put you through there's NO way I'd do it any other way! Take care and be ready to share all the fun when you return!

Barb, How wonderful to have friends like yours who want to pamper you and take care of you. Hopefully the trip will be great and that you'll have a good time and not get too worn out. Sometimes a change of scenery can be good medicine.

I've been out of touch lately and have thought of you so much and have wondered how you are doing. Hope things are going well with you.

Love,

Pat

Evening Everyone:

UGH, I'm feeling sick and I've yet to even leave my house. I'm cold, with a lot of joint stiffness. I'm super super fatigued and I just want to sleep. I don't know why I thought I could do this.

Of course I'll go on Sunday, we're not in a position where I can through away airline ticket money. Plus my friend Debbie only has time off this coming week. I've talked with her several times, and I've expressed to her several times that I'm not up to doing to much. It's likes she's a duck and she just lets my statements roll off her back. I hate the thought that I'm going to disappoint her.

She's been to my home 3 times in a row and I've yet to visit her home. I understand that she wants me to see what she's done with the house and that she wants to see me. I guess I let my feelings run my life at times. I feel obligated to go down to Florida now. I'm not sure how much time I really have left and I want to see my friend. I'm just dreading making this trip, I hate to go anywhere when I feel yucky. Please send me well wishes and prayers that I get through the next 8 days. I'll let you know how the trip goes when I get back.

Yes, I've told the airlines I'll need a wheelchair to move me from gate to gate and to baggage claim. I hope you all are feeling better than me. Have a good weekend and I love you all.

Love,
Barb

Barb, my prayers and thoughts are with you. I know how much I dread traveling when I feel really sick and I am nowhere as sick as you are, so I can't imagine how much you must be dreading the traveling. Just please don't overdo it when you get to your friend's house. Let her take care of you and try not to feel guilty about anything. I'll be thinking of you and hoping your trip goes well. LOve, hippi

Barb,

You are in my thoughts and prayers.  I know just the thought of the traveling seems overwhelming but am hoping once you get to Florida that you will be able to just relax and forget about things for a while and just allow yourself to be pampered by what sounds like to be some great people.  A change of scenery and the love of friends may be just enough to boost your energy and spirits.  Don't worry about "disappointing" your friend if you aren't able to do much.  I'm sure she will understand and want to just do what is best for you.  I hope you have a nice trip.

Hi Barbara,
If you are really feeling lousy, please don't feel obligated to go. It might be bad if you got down there and got really sick and ended up in the hospital down there and that could cause more disharmony with your friend than just not being able to go down. I'm sure she would understand, though she may miss you so much she isn't picking up on your hints. My parents do the same thing with me and there have been times I really regretted going down to visit them and letting them kind of guilt me into it even though I wasn't well enough to go. They don't mean to, they just love you and want to see you. But healthcare in Florida is catch as catch can depending where you are at and I've not good things to say about many of the large medical centers here, not so much from the doctors and complete failure of the support staff (like nurses) to follow a doctors orders and take proper care. Like most places Florida has a real shortage of nurses. Of course, maybe the right thing to do is to force yourself to, maybe you will regret not going and maybe the weariness of travelling will be the only problem you have and it will wear off once you rest after you arrive. But if in your heart you know you shouldn't go, and you can talk with your family about it, price of the ticket shouldn't be too big a deal because they will refund some and its better than you ending up stuck in Florida, in the hospital away from your friends and doctors, which could happen if you aren't feeling well. And the airlines won't let you fly if you are too ill. I know how you feel to some degree and I just want to say that I support you in whatever you feel is right in your heart for you to do. Only you know your body and its not like you planned to make plans and get sick, it just happened. I'm sure your family will understand and perhaps could help you in explaining if you don't feel you should go. But if you are going to try to go and feel like you can make it there and back, then that is good too and I send good thoughts and prayers for a safe and fun and healthy trip for you. I just feel your doubt and that little voice is often right and then we regret when we don't listen, but it could just be some fear too. When I was on heavy narcotics, I had this problem frequently because I felt good enough I would make all these plans forgetting how stressful it really was and how sick I really was and then I ended up having to be rescued and stuff because something would happen and I couldn't drive home or whatever. I also had a friend who I believed was a very close friend get mad when I came to visit and was on chemotherapy and had so many problems. I had trouble doing anything and I wasn't mentally up to snuff and my hair was falling out in gobs and I was on really strong narcotics and this friend just flipped out at me, like how dare I come to visit being so sick and it was really weird because they felt so bad about how sick I was they were totally frustrated they could do nothing for me and it came out as anger at me and it was a very uncomfortable situation and I haven't spokend to this ex-friend again. Some people can't really handle seeing their friends sick. Also, if you are afraid your friend is not going to understand if you can't come down because you are ill and you go down there anyway, she's may not understand when you can't keep up with her pace or do the things she wants to do. If she understands that possibly you cant' make it down due to illness, she will likely understand that you may not be able to do alot once you get there. I don't mean to discourage you, I just want to be on your side in thiss and not have something bad happen away from home, but I also want you to do the things you want to do for fun too. Only you really know inside if you are really up to it and forcing yourself to get through it may not help keep your body from screwing you over. If only you had your own leerjet so you could be wherever you wanted to be at a drop of a hat, and your own personal doctor and treatment room. Just a thought, but maybe travelling in a large camper where you have a bed and a toilet might be a more comfortable way for you to travel, though expensive. Just a thought, that's what my stepmom and her ninety year old mother do and her mother could never handle traveling any other way. Well take care, Barbara and know I will pray for you to whatever you do and I do hope you are well enough to travel, because your head and heart want to. Let's hope God listens and lets you have a wonderful trip.

Hi Everyone:

Just wanted to check in.  I made it to Florida and Debbie had to work on Monday.  So I slept most of the day on Monday.  Yesterday, she took me around and showed me the area and took me to the gulf of mexico.  I put my feet in the water and enjoyed the white sand.  We had lunch at the hard rock cafe, and she pushed me around an outdoor mall in a wheelchair.  Both she and her hubby are pampering me and caring for me.  After our outing we came home and I was bundled onto the couch with a blanket and pillow for a nice nap.  I'm going to bed by 10pm each night.  Debbie starts her day at 4am, so she's not an night owl.

I slept until 8am this morning, while I was sleeping Debbie did her 3 mile morning run.  In a bit we're going to go to the movies.  We're also going to go go JoAnn's Fabrics, I'm going to pick out a pattern for a quilted handbag and the material and she's going to make me one over the next month or so and mail it to me.  After that I'm sure she'll bring me home for a nap again.  I'll be leaving Saturday afternoon and be home Saturday even at 5:30pm.  Just wanted you all to know I'm doing alright  and I made it safely.  Thanks for thinking of me and I love you all.

Hugs,Barb

Oh Barb, that sounds wonderful. putting your toes in the ocean! Sounds like you got some pretty great friends there. Thanks for letting us know how it's going. Enjoy the pampering!

love ya
carol

Hi Barb.  It's good to hear that you're able to rest and enjoy yourself.  Florida is a good place to relax.  Take care Sweetie.  I'm sending you love and prayers. 

Hey Barb . . . *big smile* thanks for the great update . . . sounds like you are having a great time with your friend. What a bright spot in a difficult journey . . . enjoy the rest of your week!!! See you back here in a few days!! Blessings!

Barb,
I'm so happy your friend understands the kind of pampering you need. You deserve a friend like that. Drink in this week--it's the best kind of medicine. It's good for the soul. We love you too!
xoxo emmie