Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Friends, I felt the need to post to everyone together today, because I feel now is a time we all really have to pull together with a very strong amount of group prayers and warm wishes for all those in need right now from our online family. We have been having so much pain through loss of life, anxiety, worry, doubt, fear and uncertainty that it has been hard to find the positives that we all so desperately cling to through each day. I have come to realize that anyone who takes the wellness of life for granted is being cheated of knowing it's fullness through having friends and loved ones to support and be supported by in times that have less than that feeling of wellness. Maybe it is fitting that through this Easter week we focus on what we've been given, each in our own way, through our religion or another positive force, that gives us the strength and hope for a fulfilling future. This will be my prayer throughout each of the coming days and weeks. I wish that there was a certain time in the week that we could choose, that for just a few minutes, or even one, that we could designate as our group time to stop what we are doing, and all be thinking of each other and our needs en force, at the same time. To know we are all thinking of each other at that exact time each week might give us more fortification for endurance. This group is so close that if we could touch each other that way, it could feel like we're all holding hands for one minute each week and infusing our strength into the whole group. If you think that is something we could try to do, or maybe it has been tried before, let me know. I personally had a difficult visit with my rheumy yesterday. It wasn't dramatic or terrible, and I still think he is knowledgeable and has my best interests at heart. I was just struck by the timing of the process, from the disease's first symptoms, which in my case was almost 5 years ago, to diagnosis, which was 2 1/2 months ago for me, to yesterday, when I felt like I was being helped, but feeling frustrated that the disease control wasn't better and I wasn't able to move forward with my life as quickly as I would like. I am being taught another lesson in patience, which I have several times over these past 5 years, and I wish this time I could feel more positive about it all. For a quick explanation, I had to be put back up to 45 mgs of pred 2 weeks ago for possible disease related symptoms. Thinking that could be reduced now because the symptoms are starting to lessen, I was told no by my Dr. Furthermore, he wants me to increase the Dapsone to 150 from 100, and stay at these levels for 3 weeks till I see him again. Now three weeks isn't a long time in the grand scheme of things, and I understand his reasoning, but right now it feels like forever. I guess I have been focusing on this timing issue since seeing him, and wondered how the timing of it worked out for any of you. I know each person's circumstances dictated much of this, especially if there was airway or other serious involvement, but I'm still curious to know. Was your Dr more aggressive, and did you feel justified by how that was handled? Should I feel like I should be trying different meds by now, I don't know if it's too soon or not? I just don't know, and I hate that feeling. I am feeling inspired, in part by Susiecue and Sharon, who are ready to head to Mayo and figure it out head on. I was even thinking about finding out if we could get a group rate and all go together - wouldn't that blow them away! I am just very confused by the best road to take, as we all are time and again. I don't even think Mayo would be good for me right now in the timing of the rest of my life, but I'm not even sure how to look at that. We each have our own circumstances, and our own ways of dealing with things, but we are all bound together by a common goal - to live our lives as best we can for ourselves and those we care about. I hope we can all come to better peace of mind this week and find answers to our questions and information, if not solutions for our problems. I am praying for each of you for those things, and I know somehow we'll all find the strength to get us through. I hope you all have a calm and comfortable day, it's cold and raining here, I'm sure part of the reason it's hard to feel good. Let's look toward warmth, sunshine and happiness in the days ahead. With Love, Carol G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 What a Wonderful Letter Carol!!!!! You made me cry. I dont know what the other people in the groups think but I think it would be great to pick a day, time to stop what we are doing and just Pray for everyone in our Group......... If anyone is interested in doing this lets set a date and time. Carol Applin Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.