Called Medco and my rd and they say they got that straightened out and now waiting for pre-authorization for United Health Care. Told me I could call back tomorrow. Called and made appt. with rd for my hip pain. Also said I needed to work on disability papers. They made appt. and I was so relieved. Then they called me back and said the rd could not do anything for me until I got the Enbrel and to just drop by disability papers. I went in and almost started crying and said "what am I supposed to do"? I am taking pain killers constantly and I can hardly walk. Nurse said we have done all we can and I will just have to wait for Enbrel to get approved.
Do you guys get the shakes? My hands have been shaking pretty consistently. After I left the rd office I didn't want to come home. I have been home way too much. I decided I would go up to "string bead" and relax and make me some earrings or a necklace. Not too physical. I got me some beads but could not do it. My hands are shaking so bad. My little finger seems to be permanently crooked now. Hip pain is worse so I am home again.
I know it is just the waiting game. I have to be patient. Once I get on the Enbrel I will get better. So I am in my recliner - here with you. It is too frustrating to try to do anything else. I will try to walk the dogs later. The thing is Roxy, it doesn't matter if there are other people that are
worse off than you, there are other people who are better off too, it's
all relative and when affects your life it's shattering. I went
for my bone scan today, it took 5 hours and I was desperate to get home
to see Austin but when I got back I was so sore I couldn't bear to
chase him around the floor (he loves that) or kneel down with him, pick
him up, scared I'm damaging my wrists etc - I know this sounds silly
but I thought to myself - GOD, is this my life now, trying to make sure
i get through to the end of my life without doing to much damage to my
joints - what a way to live, its like waiting to see if you can make it
to the end alive - which is obviously impossible - its horrible -
people tell you to cheer up and that you'll be ok and you're like - but
right now - right this minute I am NOT OK and when you are telling me
to be positive I AM IN PAIN so it is hard. It must be very very
hard for you Roxy because I know you are a real outdoors girl and it
sucks when your body starts attacking itself. Brett will not
leave you - you are a catch, and I really am not just saying that, you
are smart and witty and caring and you seen to have a real depth about
you and a very interesting character Roxy and there is no way he would
walk away from that. Its hard to wait because you know that the
sooner you are on something to better but it is so close now. I
know what you mean about concentrating - the only thing I can
consentrate on is researching this bloody RA which I do a lot. I
would just really like a diagnosis and then for someone to tell me how
bad i have it and what the best meds to take are, it's so hard because
on one hand they say - get treated the quicker the better and on the
other its wait wait wait . You are in a really hard place just
now Roxy so don't be hard on yourself for being upset. Its hard
not to feel bad for yourself - lets face it, there aint much out there
telling us that RA is a walk in the Park and you have a lot of pain
just now which is stopping you doing all the things you love - as
someone said, RA may not be life threatening but it is lifestyle
threatening but the good thing is that you will feel such a huge
benefit when you get on the meds that it will feel like you've been
given a whole new shot at things and I just know that it's going to be
a whole lot sweeter for you this time round - It really wont be long
now and it'll hopefully kick in quick too. Make the most of that
recliner because I doubt you'll be in it long once you're on your feet
again. Take care - hugs from me.
Ugggh...did they even consider giving you a medrol shot to help with
pain all over? That would take some of the pain away, if not all.
Before I was MTX the only thing that helped me feel better was a good
shot in the rear. Don't know if you or the RD had considered
that.
Hopefully your enbrel will come thru for you soon.
Hi Roxy,
I know you will hang in there girl, I have such faith in you. It's no wonder that you are shaking hun, Chronic pain is so debilitating and just fatigues us so. In the beginning I felt like I was trembling all over, just from the fatigue. The fatigue will pass, you will start to feel better and you will once again do all of the things you love because you see, your will is strong, your desire to live surpasses all, you will get there even if it is one..step..at..a..time! God bless you and just let some more time pass.
Jackie
I'm wondering about the shaking thing because so far, you are the only person here I think that has ever said anything about it. However, I used to have the shakes a lot, especially at night when I was sleeping. When it first start happening, I thought we were having an earthquake but we weren't. I talked to the rheumy about it but to be honest, I'm not sure what he thought. On that rare occasion, I still wake up shaking but not as often. The mtx, which I know was bad for you, did wonders for me so I am in a different place than I used to be. Hopefully you will get your enbrel and also move on to a better place. I believe it can happen and I hope it happens soon.
Like I told you personally, which I announce here, I volunteered for a psych eval because of everything I had gone through. I believed as I was told by the docs that I was pyschosympatic which has been disproved. Unfortunately, when you encounter this obstacle day in and day out, you start to question your own sanity. It isn't your fault. You have a problem and you need help! I will pray that you get it soon because if much longer, you may end up like me - a nut case.
I'm embarrassed now to bring up issues because I now have a problem with feeling validated and it can it in your way of getting help. My Mother is always telling me that is what I pay these people for but I can't get over feeling embarrassed. What can I say, I'm screwed up! Hugs and help to you soon!!!
Roxy...I'm sorry for all that you are going through. I am just learning to make beaded jewelry. Did you learn on your own???? What was the cause of the shaking fingers???? I hope things improve for you soon! love and gentle hugs, JuliahYou all are so wonderful to sit down in my recliner and feel all this support and love. You won't believe what I did.
After the darvocet kicked in, I took the dogs for a "shuffle". I am using a walking stick which helps a lot and the dogs just run around me and I don't go too far. On the way home I thought to myself, I cannot sit in that house one minute longer. I stopped at Walmart and bought EIGHT outdoor plants. I have spent the last two hours digging a hole, sitting on my step staring at the hole, planting a plant, sitting on my step, staring at the plant, watering the plant, sitting on my step staring at the watered plant. I DID THAT SIX TIMES
Julie, I really think I would have lost it if I did not get a diagnosis - even if I was in denial about my diagnosis
Cristene, I am always so proud of you. I don't know why you don't feel validated because you have made us all so proud of you. I see how hard you try to do all you can do with what you have to deal with. That motivates me to push myself. I know many of us would love to hold your hand when you do your marathon and say "hey, we knew her when she was training "
Juliah, There is a store that has all kinds of different beads and they will teach you how to string them. I had some necklaces I was tired of, so just brought them in and took them apart and rearranged beads. It was fun except I couldn't string them and after awhile, I couldn't pick them up. I got my blood taken today because I am worried about my sugar levels. I think I am having muscle spasms in my hands that are making my fingers do these contorted movements. I think the shaking may be all the medicine I am on. I have always had a very low tolerance to meds. I have a high metabolism. The shaking sucks. Everything about ra SUCKS ! I think I am going to take up mosaics. BIGGER PIECES
Your right Jackie. I am willful and stubborn and I won't give up
Brett loves me I know. I would not want him to stay with me if I cannot do the things he loves. He is such a giving person, he deserves having a partner he can play with. That said, I have no intention of giving him up - I can't wait for my Enbrel
Yesterday was my first marathon ever - 10 miles. Do you know that a woman who had to be in her 70s was faster than I was. It was depressing for a little bit but then I told myself to let it go; however, I didn't totally since I told people at work today that this 70+ woman whopped my butt! Oh well, more power to her. I hope I can do the same at her age.
YOu keep it up Cristene and you will be able to do it at 90+. I didn't know yesterday was your marathon. I have been wallowing in self pity Christine, don't feel bad! You're doing something good...be proud Wish I had the want to do something like that. Me too! I cannot even talk myself into getting up to making myself something to eat sometimes, so I wait until hubby gets home and ask him to make me something to eat. I think I am getting spoiled and that it is not so much my RA...lol...I think I am taking advantage of hubby...but maybe I will stop soon...lol...NOT!!The frustration of waiting for medical people to get your life organized is beyond belief. I just want to shake them until their tongue falls out but that would hurt my hands too bad.
I am amazed you can get down towards the ground to plant a flower (let alone dig a hole). I tried to separate some daffodils the other day and had to give that up - the ground was way too far away from me. I did get down on the ground once but had to get the neighbor to help me up. I can't put any pressure on my wrists because they feel like they will break and I couldn't bend my fingers to put the weight on my knuckles. So I did the next best thing. I called my grandson over and paid him to do my yard work. At least now I can enjoy the look without feeling guilty for the mess. Just so you can have a fun image to think about, during the worst of my last 'siege' I couldn't walk and crawled to the bathroom. That would have been cute enough but I couldn't put any weight on my wrists or fingers so crawled on my knees and forearms. What a picture that must have made. Guess its a good thing I live alone!!!!
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