Frustrated
I need to vent somewhere, so here goes.
I was diagnosed in April 2011 after my PCP did bloodwork for continous joint and muscle pain since March, (actually earlier, but I thought there was an explanation).
I had a cold/URI since the end of December that I just couldn't seem to get rid of. Everytime it cleared up, it would come back within a few weeks. We had started gutting and redoing a Condo in January. I thought that all the fumes and such were to blame. When the joint pain started, I just assumed that it was from all of the painting, scraping, hanging, etc that I was doing. When we were finished with the Condo in February and the pain didn't go away, I guess I took more notice to it.
I finally went in to go back to the doctor for antibiotics to clear up whatever it was and decided to talk to him about the pain. The PCP gave me allergy medicine (couldn't find anything that caused the cough/hoarseness) a steroid shot and Naproxen.
My bloodwork came back RF negative, but Anti-CCP positive. He scheduled me with a Rheumy and gave me a steroid dose pack. He also gave me Tramadol since the Naproxen didn't touch the pain.
I went to see the Rheumy in April. My Significant Other went with me to the appointment. The Rheumy diagnosed OA and RA. He did a knee xray, told me I had tendonitis in both elbows, to wear braces on both knees and elbows, to continue the pain meds and to come see him when I had a "real" flare.
I have good days and horrible days. I actually went for about 3 weeks in June/July without having to take the pain meds. Then it started up slowly. The Naproxen would help, then I needed the Tramadol. There are days that the Tramadol doesn't even touch the pain.
My week consists of work M-F, coming home and finding the couch, Sat. is usually my worst, so that is my day of rest and Sunday i have to move to get things ready for the week.
My SO doesn't get it and that frustrates me to no end. We used to do all kinds of things, we were always on the go. Now, I just can't. He is frustrated, but doesn't seem to understand.
I was talking to him the other night, about a conversation that I had at work and that I was frustrated that sometimes people don't understand. A lady that I work with has OA, she told me that something else must be wrong with me because she has arthritis and she isn't as tired as I am and that she can take her Celebrex and it helps, it should help me too. When I told him how upset that I was that I tried to explain that RA is a lifelong disease that does more to your body than the OA, he actually asked me, "You have a disease?"
If I could have reached across the table and smacked him I would have!
I was dumbfounded. Really? We've been together for 2 1/2 years, this is not how we have ever been. We were always out doing something. I would love to get out of the house and do something. On good days, we still get out, unfortunately, I know that I cannot be out all day. If we want to go to something that is happening all weekend, it is impossible to set a definate date. We have to play it by ear. I always pray that I feel good enough on Saturday to go, so we get the opportunity. If Saturdays are bad, there are no guarantees that it will happen on Sunday.
I have tried to talk to him about different meds, but he gets glossy eyed and thinks that I am being dramatic. Thats how I feel at least.
I have an appointment with the Rheumy on Tuesday to discuss DMARDs. Something has to help. The more I research, the madder I get that he didn't treat this aggressively from the beginning. That it has been almost 6 months now and the joint pain has moved into my wrists, hands, feet and ankles. I do not present with visual swelling just the aches and pain.
Maybe that is part of the problem. My partner can't see that I am swollen, so it just doesn't exist in his eyes.
I'm just frustrated. I know that it will never go away, but I would like it to be bearable.
I want my partner to understand. I want him to "get" that I need help around the house without me having to ask. I've told him, "I can't do that, it hurts", but it doesn't seem to sink in. So, I do it myself, slowly and not so frequently...I do it myself when I have a good day, and then I pay the price. And then I get angry and resentful.
I resent that something that would take him 5 minutes to do takes me 10 or more and that he just watches.
A week or so ago, I had a good day, and needed to clean the bathrooms. We had spent Sunday doing our running around so I started on them in the evening when we got home. He asked if I was really going to start that that late at night. I told him that someone had to do it, when was the last time he cleaned the bathrooms? He just said "never". UUUGGGGHHHHH...exactly!
He has said that he wants to go with me to my appointment on Tuesday. I'm not sure why. He won't get it anyway. He just wants it to go away so we can go back to how everything was.
I did make an appointment with another Rheumy but can't get in until November. I figure if this one won't listen to me maybe the new one will.
I am hoping that something changes. Something has to. I can't do this forever, not like it is now. I resolve to get past this. I'm just frustrated and tired and needed to vent.
Love,
Me
I was diagnosed in April 2011 after my PCP did bloodwork for continous joint and muscle pain since March, (actually earlier, but I thought there was an explanation).
I had a cold/URI since the end of December that I just couldn't seem to get rid of. Everytime it cleared up, it would come back within a few weeks. We had started gutting and redoing a Condo in January. I thought that all the fumes and such were to blame. When the joint pain started, I just assumed that it was from all of the painting, scraping, hanging, etc that I was doing. When we were finished with the Condo in February and the pain didn't go away, I guess I took more notice to it.
I finally went in to go back to the doctor for antibiotics to clear up whatever it was and decided to talk to him about the pain. The PCP gave me allergy medicine (couldn't find anything that caused the cough/hoarseness) a steroid shot and Naproxen.
My bloodwork came back RF negative, but Anti-CCP positive. He scheduled me with a Rheumy and gave me a steroid dose pack. He also gave me Tramadol since the Naproxen didn't touch the pain.
I went to see the Rheumy in April. My Significant Other went with me to the appointment. The Rheumy diagnosed OA and RA. He did a knee xray, told me I had tendonitis in both elbows, to wear braces on both knees and elbows, to continue the pain meds and to come see him when I had a "real" flare.
I have good days and horrible days. I actually went for about 3 weeks in June/July without having to take the pain meds. Then it started up slowly. The Naproxen would help, then I needed the Tramadol. There are days that the Tramadol doesn't even touch the pain.
My week consists of work M-F, coming home and finding the couch, Sat. is usually my worst, so that is my day of rest and Sunday i have to move to get things ready for the week.
My SO doesn't get it and that frustrates me to no end. We used to do all kinds of things, we were always on the go. Now, I just can't. He is frustrated, but doesn't seem to understand.
I was talking to him the other night, about a conversation that I had at work and that I was frustrated that sometimes people don't understand. A lady that I work with has OA, she told me that something else must be wrong with me because she has arthritis and she isn't as tired as I am and that she can take her Celebrex and it helps, it should help me too. When I told him how upset that I was that I tried to explain that RA is a lifelong disease that does more to your body than the OA, he actually asked me, "You have a disease?"
If I could have reached across the table and smacked him I would have!
I was dumbfounded. Really? We've been together for 2 1/2 years, this is not how we have ever been. We were always out doing something. I would love to get out of the house and do something. On good days, we still get out, unfortunately, I know that I cannot be out all day. If we want to go to something that is happening all weekend, it is impossible to set a definate date. We have to play it by ear. I always pray that I feel good enough on Saturday to go, so we get the opportunity. If Saturdays are bad, there are no guarantees that it will happen on Sunday.
I have tried to talk to him about different meds, but he gets glossy eyed and thinks that I am being dramatic. Thats how I feel at least.
I have an appointment with the Rheumy on Tuesday to discuss DMARDs. Something has to help. The more I research, the madder I get that he didn't treat this aggressively from the beginning. That it has been almost 6 months now and the joint pain has moved into my wrists, hands, feet and ankles. I do not present with visual swelling just the aches and pain.
Maybe that is part of the problem. My partner can't see that I am swollen, so it just doesn't exist in his eyes.
I'm just frustrated. I know that it will never go away, but I would like it to be bearable.
I want my partner to understand. I want him to "get" that I need help around the house without me having to ask. I've told him, "I can't do that, it hurts", but it doesn't seem to sink in. So, I do it myself, slowly and not so frequently...I do it myself when I have a good day, and then I pay the price. And then I get angry and resentful.
I resent that something that would take him 5 minutes to do takes me 10 or more and that he just watches.
A week or so ago, I had a good day, and needed to clean the bathrooms. We had spent Sunday doing our running around so I started on them in the evening when we got home. He asked if I was really going to start that that late at night. I told him that someone had to do it, when was the last time he cleaned the bathrooms? He just said "never". UUUGGGGHHHHH...exactly!
He has said that he wants to go with me to my appointment on Tuesday. I'm not sure why. He won't get it anyway. He just wants it to go away so we can go back to how everything was.
I did make an appointment with another Rheumy but can't get in until November. I figure if this one won't listen to me maybe the new one will.
I am hoping that something changes. Something has to. I can't do this forever, not like it is now. I resolve to get past this. I'm just frustrated and tired and needed to vent.
Love,
Me
Replies
I also have no visible swelling or damage, just severe pain and ohhh the fatigue. That does make it harder for others to understand. My hubby didn\'t get it in the beginning. Then he was diagnosed with asthma and started having allergies to a million things. We had to put a lot of effort into research just to know what was safe for him to eat. I think somehow that made something click for him and he\'s been very loving and understanding with me since (other family, not so much). I hope that things have gotten better for you since your wrote this.