So I take my first Enbrel injection and stay on the 20mg MTX that I have been on for almost 5 months, spend the following day in bed all day with extreme fatigue, Thursday the fatigue is somewhat better, Friday and Saturday I had 2 only moderately painful days and this morning I can't walk, severe pain in my knees and ankles.
The one thing that I so want to do each week is attend church and I can't get up long enough to dress or do my hair. I don't understand at all. I know that I need to stay positive but this is too much. The one way that I gather strength was taken away from me this morning. I think I will make an appt. with my Psycologist tomorrow.
Then I also read on a link here that part of SS's criteria for inflammatory arthrits disability is a lab conformation. Gee what about being sero-negative? I just might do better trying for a "head" or depression check and if that is what it takes, oh well.
I am grateful for a place to vent as hubby got all of the crying this morning and I hate to mess up his day as well.
Bonny~
Even if you can't get up and make it to Church you can still spend time with the Lord at home from bed if you have to.
My Sunday routine includes coffee in bed and Joel Osteen on TV. His message is always up lifting to me and encourages me to remember; Tomorrow's a new day. Just because today is bad does not mean all is lost.
I'm sorry you're having a rough time with things. Don't give up.....things will improve. Just keep the faith.
Bonny, so sorry that you cannot do the one thing that you really want to do, hope this is a temporary setback. Also hope that others who have taken Enbrel will join in to let you know how long it took for them to get results. As for lab confirmation in seronegative RA, have the had the CCP or anti-CCP test? Sometimes this is positive when the RF is negative. If you have a psychologist, seeing him/her would be really helpful, I think. With them we can pour out all the fears, frustrations, anxieties and anger that we try to keep from our families.
Pat
Bonny-I'm sorry to hear you are having such a rough time o things. I understand about being able to go to church, I really hate when I miss (like today!) But Lovie is right. You can still spend time with the Lord. I know ithat it is not the same as the fellowship with other, but it is important. Many times I get discouraged because I can't make church and have to go a whole week 'on my own' (no close christian friends at this time) but at these times it is even more important to 'fight back' and not let the enemy defeat you in this area.
I really hope you are feeling better soon, You have lots of friends here, and can always feel free to vent. Lots of hugs to you!!
I know missing church really is hard.. there are times I dont get there but I am not sure what your faith is but if you
can get to your puter and you have a good connection ie dsl or cable then
calvary chapel of ft laurderdale has a awesome web stream of their live sunday service and the sat night service.
pastor bob coy is also a great speaker. I live in NY but if I miss church I will tune in to the service from ft laurderdale its not the same as being there but they really doa great job broadcasting over the web.
other churches do as well but noone i have seen does a great a job as ft laurderdale.
they have the worship , everything and the sound is clear it's almost like being there.
Hey Bonny---Sorry you are feeling down; but it's not time to give up hope on the Enbrel. The typical time for it to work is at least 2 full weeks; with full effect not definite for 3 months. This is probably unrelated and a " flare' you would have had anyway.
I am a bit down myself. i did my second injection today. Nothing good yet--as a matter of fact i have had headaches for the last 4 days( I do not routinely get them). I know it is listed as a ' common' side-effect; just hoping it is one that lessens with adjusting to the drug. Who knows though. Lou
Bonny- I hope you are feeling better. I take Enbrel and I think it has helped, although it did take 2-3 months before I really felt the effects. My mornings are much easier and my energy level has been given a large boost. I know it may seem like a long time for Enbrel to work, especially given the price, but I'm sure you will feel much better. Also, I agree with Felines4ever - have your doc test for Anti-CCP. Although this test is somewhat new, it is much more specific for RA. Best wishes.Hang in there Bonny - hope you feel better soon.Bonny, I agree.Having someone who will listen and help is sometimes a really good idea. I am sure alot of us know what it's like to have the one thing we really look forward to, be the one thing we can't do on a certain day or week. I know I understand exactly what that feels like. Been living that one for a few months. A counselor can be a lifesaver when it all looks pretty bleak. It's just hard to feel so bad. I really hope your doing alot better soon. Hugs Bonnie, I am so sorry you are feeling so rotten. Its hard to stay positive when you feel so bad for so long but we must hang in there. Take it one day at a time.... My sister is sero-negative, and was granted SS disability on her first try at age 48. All anybody has to do is look at her to tell that she's seriously impaired by arthritis. The most important thing is to have a good doctor who keeps good records of the progress of your disease and the medications you've taken, and who will take the time to write a convincing narrative to attach to the stuff you submit to Social Security. Don't give up hope because of somebody else's experience, your's may very well be different. Hang in there!! HI Bonnie, Sorry to hear you are not doing very well. I hope you feel better soon. You are always welcome to vent here. We understand. Hugs I thank everyone for the replies. I really needed them while the family was at church and then the fellowship dinner after. You all have some great ideas and yes I will be patient and give the Enbrel a chance. You are right that it was probably coming with or without Enbrel. I had a 4 day one two weeks ago and this one is in it's second day and in between is bad but these flares that put us to bed, wow.
I am emotionally better today since telling people that understand helps somehow. I hate to always tell hubby and son. They are so good to me and I hate the painful look in their eyes when I talk to them but they do need to know what is going on sometimes.
Thanks to all again.
Bonny- I hope you feel better soon! my grandfather had both his knees replaced so him and my grandmother couldn't go to church, they would watch one of the services on tv, but it wasn't the same. she was so upset, and i told her as long as she prayed she could be anywhere and god would listen. anyhow, feel better.
-Jessica
HI Bonny, get better soon!
I don't know if your church has communion but I know at ours we do and we have people bring to the people that can't get to church> or maybe ask your pastor/rev/ whatever to come out and visit you. I work as a secretary at our church (when I can) and our Rev goes and visits people and lifts them up. You will never know ifyou don't ask.
CinDee