Yesterday it really set in. My doctor wants me to go to Stanford, six hour drive. She believes I have another auto immune disease that I need "experts" to help identify. The Enbrel and stress is giving me infection after infection. I have difficulty standing AND sitting. It SUX.
My Kelsey has been an angel but I admit, her incontinence is getting on my nerves. Tough when you don't feel good. I don't blame her or say anything to her, but it gets me down.
My husband not working right now has me worried as we need the money moving and having difficulty finding a lender as I am not working, the house has a buried oil tank, two kitchens - all things they don't like to lend on. We put Brett's place on the market which would solve most of our problems but market is slow.
The house is crowded. My poor girl is sleeping on the floor in the office. With her incontinence, I don't want her on the couches. The entire house is only 900 Sq. ft. so it is crowded.
THERE. Now I vented. That is why I have not been posting much. Tough week. I am sure it will get better. This week has just been a tough one
So sorry to hear about the things going on and that you may have another disease. It's a lot of work driving there and going through more tests, but it will be really good if they can get things figured out before you move.
I can't remember, but do you take anything for depression? Do you get any time to yourself during the day? Hang in there-I will be praying for you and that the doctor's at stanford will be led to find the exact problem and the exact treatment for you.
I am between rheumy's now and by the time I get to see the new one, I will be 5 weeks overdue for remicade, so should be interesting! But I mention this because I am bummed to have to change doctors and hope the new one is good. You must have a good rd for her to be proactive enough to send you for more testing. When do you go? Also, did you ever try Remicade? Really works well for me.
Blessings to you today-Tara
I'm sorry Sweetie. Try to kep you chin up.
Can't Kelsey wear something like depends or something? You really can't even notice a person is wearing them. Surely she would feel more comfortable in something like that as well.
I know this is all a temporary situation. Just venting. I have been trying to talk Kelsey into wearing depends but she says SHE IS NOT WEARING A DIAPER. She gets up at night, and sleep walks, drops her panties and pees on the floor - anywhere. She is not even awake !!! I have watched her do it and cannot wake her or get her to toilet on time.
I am not going to Stanford until things settle down. Until this house falls through or we get it. Kelsey is on Medicare and I want to take her to doctor for incontinence but the only clinic that takes medicare has like a four hour wait in a waiting room full of sick people. I just can't drag myself down there. I know I should.
I am sorry Tara you are going to have to go off Remicade. I see my rd on Monday to decide if I am to be taken off Enbrel. The concern is I am getting so many infections. My lymph glands have been swollen for months, constant sore throat, constant muscle aches, I have a vaginal infection that won't go away and I have a nasty stye in my eye. BUT - my joints are fine - lmao
I think the hardest thing for me is being in limbo. Just to sick and tired to get anything done. Brett has his hands full, between paperwork, Kelsey, and keeping us fed. I just have not been contributing much at all and it really depresses me. Kelsey and Brett go out for dog walks or errands and I envy them. Problem is when I go - they have to take me home. I am just no fun at all
I know a lot of this can be attributed to stress. Brett not working, Kelsey sharing such a small space with us, my dream house that I have my heart set on (I shouldn't do that), selling Brett's property when we were going to keep it. Just a lot of STUFF. Brett has been getting boils, he has a stye - I am wondering if it is Kelsey's bad habits. We caught her the other day wiping her mouth on our bedspread while she was eating. YUK. She has not had to have manners in so long that she needs so much direction that I feel too tired to do right now. Brett is working with her.
Tara, Good luck with your new rd. I hope your Remicade break does not throw you off too much. How is work going?
All of this is temporary - I KNOW THAT - just for now I am stressed. Sorry guys - I just needed to vent. Roxy, I'm soooo sorry that you're going through this.
I'll say extra prayers for you.
Yes, it gets to be a handful when Kelsy is sleepwalking. I don't blame her for not wanting to wear a diaper. Will she wear Poise panty liners? They are thin and will help protect when there's a accident.
Roxy, hang in there. The real estate market is slow now but it will pick up.
MarisaRoxy, I'm so sorry you are going through all this trouble. Stanford is a great place. We took our son there years ago when they thought he had cystic fibrosis. Turns out he didn't but I was very impressed with the care and expertise there. Another friend with RA went there for testing too. They turned up some complications that her regular RA had not diagnosed. Hang in there. My prayers are with you.
Roxy~All this is new to you. You are not use to having Kelsey home full time.....or Brett for that matter. You guys will all get into a groove soon.
You need to consentrate on your health though. As you begin to feel better; you'll be more able to deal with the challenages of this new life.
It's only temporary; just as you said. This too shall pass. Hang in there.
Well some good news. We got a loan for the house - high interest but when Brett sells his no early pay off penalty. Kelsey agreed to where Depends at night. I packed four boxes and cleaned out aquarium and I AM DONE. We were supposed to go to a concert in the park. They don't know it yet, but I am going to flake. Just showering sounds exhausting. So little by little. Things will get better. Moving is stressful !!!!! Rox Linda, I look forward to going to Stanford to figure out what is wrong with my muscles. BUT - I am just not taking on any new responsibilities until we get settled in to new house. I am always on the edge of flaring bad and that is a six hour drive.Roxy, it all sounds very frustrating. Since you can't get Kelsey into see a doc right away, could you call your own GP and ask what they suggest you do in the meantime. There are both children and older adults that have these problems. And solutions have to be worked out.
You know when my son went to live with his dad when he was about 15, he came back with some horrible habits and attitudes. But I just out stubborned him. It's really hard when you don't feel good, because it takes energy. I blew up at him a few times.
It worked though. He is a wonderfu, well-mannered son now. Kelsey will get the hang of it. She's being living in a hell hole and you know that they didn't truly care for her.
It worries me about how you are feeling. But it has to be aggravated even more by all the changes in your life. I figure that my moving into this place, set everything off. Or, maybe it was that I could just feel it coming.
Right now, I would welcome another doctor looking at my situation.
I still think everything is going to fall in place for you. Since I've met you, you have really moved far in your life.
Remember, you have the right to be exhausted and tired. You have an illness that despite how much you would want it to go away, it just won't. But you're tough, Roxy. And, you will get through this.
It also sounds like Brett and Kelsey are dedicated to making things work. It would be horrible if you were not all trying, even if you butt heads once and awhile.
It's called being a family. That's what you've made. Tremendous achievement if you ask me. What a wonderful thing to go and build, even if you have RA and another disease.
I know you are worried about that. You know how crazy I go over tests and doctors. But the upside is that they might find something that's really going to make a difference in how you feel. I wish my doctor was as caring as yours. (I'm still mad at him.)
Take care my dear friend,
Deanna
I'm sorry, but who is Kelsey?Roxy's young Adult daughter. She suffers from mental illness and has just recently come to live with Roxy and her husband Brett full time.Thank you all for your support. A new day
The social worker came by to check on Kelsey yesterday. Every two weeks we have to bring her in. MY GOD - the way they treated her for the last five years and they CHECK ON ME
My biggest stressor right now is my short term disability runs out in three weeks. I have never been without my own income. Scary.
Feel a bit better this morning. Packed five boxes yesterday. Going to try for five more today. Amazing how much stuff I have collected but I am packing all my favorites and then maybe a big thrift store run. I dream every night of that house.
My doctor said it does not make sense that I want to keep her after we move but I do. The train is a four hour ride but I love her so much.
She changed my pain meds to percocet. I have not gotten the script yet as I know they knock you out. They are just for the really really hard times.
So here we go again. Wishing you all a great day and wishing my family a good one too.
Best to you,
Trisha
Roxy, are you going to refinance when you sell Brett's house? You want to make sure that your payments go down, instead of making the mortgage shorter. I'm sure you know that, but I know that if the mortgage company can find a way to screw you, they will - if they make money from it.