I ended up in the hospital agian for 2 weeks due to issues related to my knee pain. I was put on Lyrica, but when I got to a higher dose, I experiened significant swelling in my feet and legs. So, they put me in the hospital to try and get my medications under control and give my husband some respite care. They took me off the Lyrica and tried Gabapentin. It started out fine, but again when it got to a higher does, the swelling reoccured and I was taking a diurectic at the same time! So, they sent me home that way and I'll just have to live with it. The swollen feet are much easier to bear then the nerve pain in my knees! However, I'm not sure this gives my husband a break because I still can't walk; only a short ways with the walker. We're going to see if we can increase home care to help him out. Not much else we can do.
I also had an appointment with my rheumy yesterday and he is SO good! I am so lucky to have him. He was asking me questions about my knees and he was describing exactly what was happening to me. He said "does it feel like bands around your knee?" And I said wow; I just told my husband yesterday that "it feels like I was wearing knee pads." I was floored. He actually believed my problems with my knees and understood what was going on. Locally (the hospital nurses and doctors) think I'm either a drug addict or a hypochondriac! It was such a relief. However, I think I have a long road ahead of me. He said it can happen when you increase or decrease prednisone. Mine was increased from 8 mg to 80mg when I had the pericarditis. I went down to 40 mg and the knee pain started. They had me back up to 60 mg, but are decreasing it again. I am at 45 mg. So, he wants me to reduce it ASAp; 5 mg a week. We'll see what happens. When I decreased my prednisone before (35 mg to 8 mg) I could only decrease it by 1 mg a month or I would have inflammation issues. So, I am keeping my fingers crossed. And I hope my knees heal quickly.
I was told by work that my best option is to apply for medical retirement. I sent him the forms to complete, but I wasn't sure what he would think about it because if I go in remission, I could probably work as I have a desk job. So, I asked him about it and he said "you will never work again". He was so strong about it, it shocked me. I have had Lupus for 2 1/2 years and have not been in remission yet, so logically it looks like I may never be able to work, but in my head, I always hoped I would go back to work. So, I guess that is a good thing and a bad thing as I did love my job and was the bread winner of the family. I'll lose about $25,000 a year. So, my husband will have to find a better job or we'll just have to readjust.
I also saw my Respirologist (Pulumonolgist in the US I think) on Tuesday. He confirmed the damage in my lungs from the blood clots and chest tube that I had before I was diagnosed with Lupus. The damage is permanent, but it shouldn't get worse unless I have another trauma in my lung. However, the pain from the nerve endings will not go away and I'll have chronic pain forever. He is going to ask my family doctor to refer me to the pain clinic. There is a long waiting list, but I heard it is worth the wait.
I guess that's enough for now LOL. I hope everyone is have a great day!
Nutty
I also had an appointment with my rheumy yesterday and he is SO good! I am so lucky to have him. He was asking me questions about my knees and he was describing exactly what was happening to me. He said "does it feel like bands around your knee?" And I said wow; I just told my husband yesterday that "it feels like I was wearing knee pads." I was floored. He actually believed my problems with my knees and understood what was going on. Locally (the hospital nurses and doctors) think I'm either a drug addict or a hypochondriac! It was such a relief. However, I think I have a long road ahead of me. He said it can happen when you increase or decrease prednisone. Mine was increased from 8 mg to 80mg when I had the pericarditis. I went down to 40 mg and the knee pain started. They had me back up to 60 mg, but are decreasing it again. I am at 45 mg. So, he wants me to reduce it ASAp; 5 mg a week. We'll see what happens. When I decreased my prednisone before (35 mg to 8 mg) I could only decrease it by 1 mg a month or I would have inflammation issues. So, I am keeping my fingers crossed. And I hope my knees heal quickly.
I was told by work that my best option is to apply for medical retirement. I sent him the forms to complete, but I wasn't sure what he would think about it because if I go in remission, I could probably work as I have a desk job. So, I asked him about it and he said "you will never work again". He was so strong about it, it shocked me. I have had Lupus for 2 1/2 years and have not been in remission yet, so logically it looks like I may never be able to work, but in my head, I always hoped I would go back to work. So, I guess that is a good thing and a bad thing as I did love my job and was the bread winner of the family. I'll lose about $25,000 a year. So, my husband will have to find a better job or we'll just have to readjust.
I also saw my Respirologist (Pulumonolgist in the US I think) on Tuesday. He confirmed the damage in my lungs from the blood clots and chest tube that I had before I was diagnosed with Lupus. The damage is permanent, but it shouldn't get worse unless I have another trauma in my lung. However, the pain from the nerve endings will not go away and I'll have chronic pain forever. He is going to ask my family doctor to refer me to the pain clinic. There is a long waiting list, but I heard it is worth the wait.
I guess that's enough for now LOL. I hope everyone is have a great day!
Nutty
