Well, I definitely have to acknowledge I am flaring. I cannot walk at all without the cane and am using the walker also. I was going to go to doctor with Kelsey this morning on one of those disabled persons van. She said she could go herself and I hurt so bad - I was like hooooooooooray. I wrote down every one of her meds and how much we have left, a note to the doctor with my phone number and I got the driver to drop her off and pick her up in the waiting room. She has been amazing. I am the worse in the morning. I can hardly move - very hard to get out of bed. Kelsey now every morning feeds ALL the animals and empties the dishwasher for me. What would I do without her. We need each other and it feels good to have each other. I feel so close to her right now. I told her I thought I would be in the hospital if she were not here and how grateful I am and she just melted. I think she likes taking care of mom.
I took my pred., relafin, painkillers and the Enbrel does not seem to be kicking in. I am not doing anything today. That is tough because I have so much to do. I have not heard from Brett in a couple days.
Big step for this family. Kelsey is going to doctor's appt on her own and I am STOPPING. I have to, I feel so crippled it is scaring me.
Excited about new dog. I am asking my sis in law if she will take me down to pick her up. I may need someone strong to handle her at first. She is housetrained and knows basic commands. She does not know stay but will learn it quick as my dogs stay at the turn of a dime. (Is that the saying
One day at a time, going to get better, everything is going to work out that is my saying today.
Yay on your daughter going to the doctor all by herself! Its wonderful you have eachother and I bet she does like taking care of mom! Rest and feel better soon! Hugs and loveThanks Michele. Brett just called. He was really nice. I told him the condition I am in and said "Are you going to take care of me?" God that was hard to say. He didn't come back with Oh Baby I love you, of course I am going to take care of you he just said "yes". I guess that will have to do. I said is it freaking you out I am getting so much worse and he said "yes, but we gotta do what we gotta do". Not too comforting but I don't feel abandoned. I feel so bad, I think he feels stuck.
He is very happy about the new dog. He loves Tyler to bits and he has been wanting a partner for him. He will take them to the park everyday. I have gone twice since I have been here. Brett goes everyday. I pray someday I can go on the dog walks with him again.
I am supposed to go to the rehab for a weekend family session next weekend. I don't know if I can go. Maybe take the train but who will take care of Kelsey and the animals. Also, there is the motel room. I don't think I am going to be able to go.
I told Brett when he comes back I want to go to marriage counseling. He agreed and wants to go too.
Who knows what will happen but if Brett stays with me in this situation and does not drink - he is the amazing guy I always thought him to be.
And Kelsey going all by herself? Roxy that is one giant step in the right direction. Bless her heart.
Ok now, let's stay on this path because it leads to a huge rainbow
where you can make any wish you want and it will be granted. So,
we can dream can't we? It doesn't even hurt.
Let us all know how Kelsey made out.
Roxy try to take it one day at a time. It is too hard to live your life all at once when you are so sick. Visualise yourself feeling better, and getting well.
This stupid disease is not just all down hill....in my early thrities I was sure I would be in a wheel chair before forty. l am 52 and still walking. I got better! (yeah ok I am worse than when I was really good at 39, but I'm not near as miserable as I was when I was 33.)
I need to hear that Marion over and over again. Thanks.
N & T - My wish would be that my marriage stays together and I can just appreciate what a wonderful family I have. That is my wish at the end of the rainbow. Can I throw in a dog walk once in awhile
Of course, everyone is entitled to a "moment" now & then. I know we all have them. Especially when we can no longer make ourselves carry on like everything is ok. This disease is so dreadful! Just know we are all here for you as you have been for everyone else for so long.
Kelsey sounds like she is thriving in her new role as helper to Mom! That may be just what she needs; someone to take care of. God Bless you both.
I sure hope Brett comes home as the man you love; the strong, sober man who can bring back all the good traits you fell in love with.
My heart is with you. Gentle hugs and many blessings,
Nini
Roxy, about two and half years ago I was homebound because I couldn't walk due to RA and PA. None of the combo of meds seemed to work except for large daily doses of steroids. I finally was able to walk out of the house. The next day I'd walk out of the house and take 5 steps and the next day 6 steps. It was literally "one step at a time" and it took about 6 months for me to be able to walk from the parking lot to my RD's office. I was told not to be surprised if I weren't wheelchair bound for the rest of my life. Each day I was able to force myself to go farther and farther. I used 2 canes at first, then 1 cane, and then none. I started on Enbrel and stayed on 35 mg. of Prednisone and within 3 months I had retired and we were on our way to Mexico for the winter. I continued to improve on 35 mg. of Pred. but it took it's toll. I'm now down to 9mg.
I just wanted to relate my story once again so that you'll realize, that yes, you can get better. This time next year you could be in some form of remission. One never knows. I've since been put on Remicade infusions and I'm as good as I'll ever get. I can walk for 5-8 blocks on most days. In your post I haven't read anything about you returning sooner to the RD. If you're progressing this rapidly please call and get an appointment. Your RD needs to know about this current flare and what you're going through emotionally. Am really happy to hear that Kelsey is helping you. This may be the role she needs right now...the caregiver.
Roxy you're amazing. Look at how far you've come and all that you've done on your own!!!!!! And look at how far Kelsey has come! Honestly, it didn't suprise me that Brett didn't say what you wanted him to. I'm sure he's got A LOT on his mind right now, he's probably more than a little distracted. It's understandable. I hope everything keeps on this path! You seem so much more relaxed, and you need to be. I'm only repeating what everyone else has said...take care of ROXY! :) We love you!
Roxy!!! How awesome for Kelsey!! This is gonna be a weird way of looking at this situation but maybe you are going through a rough time to help Kelsey learn to do the things she needs to do herself. Just remember what ive always said....Things happen for reasons. Just take care of yourself and everything else will fall into place. Have fun with the new "baby" my husbands uncle has 2 of those dogs * cant spell it sorry* and they are BIG babies lol Take care hun! XOXOThanks to all of you. Kelsey DID GREAT!!!! I was concerned because she came home and she said she didn't think she did very well. I was too nervous. I called doctor and they did not understand about her meds. She needed all her meds called in and they were not refills as we just moved here. Got that straightened out. They said she was very sweet and did well. I am so proud of her
Now I am trying not to be nervous. She has been gone over an hour. She walked down to Starbucks for coffee, to rent us a couple movies and to buy us some hamburgers. She sounds like the MOM !!!! As I was writing this the phone rang. It was her on the cell phone asking if she could stay a half hour more
Meals on Wheels might not work out. We might go for TV dinners. Today's dinner, neither Kelsey nor I wanted to eat. It was overdone hospital like food. YUK. So Kelsey is getting us burgers - lol. We are going to try one more night of meals on wheels and if it is yukky again I will cancel and stock up on tv dinners
You all would be proud. I did some paperwork. Worked on details to get our new family member, Abby, our new weimeraner. Talked for an hour with her present owner and made her feel at ease that she would get a good home here. My Tyler is taking all the room up on my chair with me right now - guess I will be on the floor with two of them
Pain still there but coping much better. That is because of all of you and Kelsey. Much more optimistic. Thanks all of you and thanks Linda. I just get scared when it gets bad and those doctors love to "prepare you for the worse". I am still mad that he was right that I could not continue my ranger job
Love and HUGZ to all.
Roxy, im glad Kelsey did great with the drs. Remember you have my phone number if you ever need someone to talk to.....Hey Roxy, that's great news all around! Sounds like Kelsey is enjoying being the "mom"!
Hi Roxy,
The only thing I remember you mentioning after your last RD visit was that they wanted you to get a wheelchair! But what about pain management? It seems to me that there are an awful lot of good ways to treat pain these days and I can't see why anyone should be in as must discomfort as you apparently are. I mean Percocet is sort of like chasing the problem all of the time. There are so many other choices. Have you discussed pain management specifically with your RD? Seems like it might be time. Not that you are giving up but I think it would give you a better quality of life. Just a thought.
Jeanne
I feel now that Kelsey has some part in helping out it makes her feel more confident and that gives her the ability to do more and more things on her own. She is doing great (like we talked about she would) and I am willing to bet she continues to do great.
Congrats on the new weim! I bet that she will make a wonderful companion for Tyler and a great addition to the family.
Seems like those baby steps are working out well and you are gaining back a lot of confidence in yourself and your ability to remain as independant as possible. I am glad you are using the services available out there. That way you are not so run down and can concentrate on one step at a time to get better.
You sound so much better. Julie went through having to learn to go to her own doctors and get her meds. It was the most important thing for her to learn. If Kelsey can get comfortable doing this, she will be able to get help for herself even when you are not doing so well. That will make you feel so much better.Jeanne, Frankly I am not psychologically ready for the morphiates. I want to get into hot water therapy again. I am going to try to go to the pool today but that pool is not warm enough. It is not like the 94degree pool I used to exercise in. I would get out feeling limber and full of endorphins, like a good hike. This pool helps my body move and getting in the jacuzzi feels good but no long term effects. I really miss my old gym.
This doctor here was in too much of a hurry. She said "you have too many issues, you will have to come back" so I am asking for a pain specialist referral and she was supposed to get me a referral to an RD. Hope she did !!!!! I miss my old doc- she was so thorough and wonderful. She discussed morphiates with me but I refused. I was doing better than and I liked the control of only taking pain pills when I need them. Well unless things get better, I might consider something else. I am in pain all the time lately.
The one thing I am doing is taking Kelsey swimming with me today. Then more R and R. I didn't realize next week was Thanksgiving and I have to be able to drive and cook something
OH Jeannie, That sounds so wonderful to be active again. But - can you get off morphiates once you are on them? I feel like I could get off percocett easily if the pain was not so intense. There is no high that I enjoy. It just makes me spacey.
I am going to doctor Nov. 29. I hope she takes more time with me. I want to see a pain specialist and investigate my options. Right now, the copay at the PT is more than I can afford so I just set up an exercise program with her. I wish my disability would come in and I am just having faith Brett will come back with his chit together. When his property sells, this financial stress is gone. I pray every day. Things have to get better. I can't lose hope. Thank God I have my Kelsey. She makes me happy as I am so proud of her !!!!!!