Steph, I struggle every day with the same feelings you have right now. I just want to be normal. I feel like I've been on prednisone and Imuran for eternity too. Then I shake myself out of the funk and realize that without these meds, I'd be dead.
This disease really challenges our patience. We're forced to endure flare after flare, issue after issue, doctor appointment after doctor appointment, blood test after blood test. It's an awful lot to manage. Ever feel like lupus has become a very serious full time job? I laugh at myself now and say, "I have two full time jobs. My photography, and my lupus." It's so true.
I think over these last 7 almost 8 years, my patience has been tested the most. It's also been strengthened to a point that amazes my family and friends. When you can just give up the need to be in control of all this, it is incredibly freeing. You do your best to follow your doctor's advice, and you do your best to take your meds on time, every day. You eat well, and exercise when you can. You do everything possible to maintain a possitive attitude, and you do your best to help others in greater need - you will find peace and joy. You will be able to get through the hard days, even if you still need to have a good cry. You get through it. You find a way to cope and to stay encouraged. The only way to do that, is to be patient, and do your best. You will be rewarded.
Don't forget how HUGE a baby step is with our meds. Coming down one whole pill is a big deal! Coming down 1mg of prednisone is a big deal. These are powerful drugs. Take it slow and steady. That's what I've done, and it's paid off! I was in remission for 4 years, but only because I did what I was told!
It's okay to have these feelings Steph. It's healthy to go through the grieving. You're angry right now, and sad. Those are steps in grieving. Go through it. Do it, feel it. Be mad. Get it all out. Then get determined to get well. Fight this. Don't let lupus win. Be a warrior!!! LOL. Be a fighter who is positive and encouraged and lifted up! We can all be that way. It's a choice. We can't change our reality. We have lupus and it blows. It blows really bad. But let's be victors in this! I hope this is encouraging for you.
I'm having a GOOD day today. I found out that I do not have diabetes and I don't have hypoglycemia! My low blood sugar symptoms are completely harmless! I was at the blood sugar testing unit all day today. Everything turned out perfect. My pancreas works perfeclty. I just have to manage my anxiety to avoid making these symptoms so bad. Finally, something in my body is working correctly, LOL! Halleluia! I'm doing pretty well after that drug allergy in June. My hair has stopped falling out and is growing back in now. Inch and a half long pieces of hair that stick straight up. PRETTY!!! My blood coagulation (APS) is back to normal levels now too. So my blood thinners are nice and steady. No more 3 times a week to the lab! So things are making a positive comeback. I'm feeling really good today . yes, I had a very nice Canadian Thanksgiving back in October! Now we're all ready for Christmas. Including the blasted cold weather! Did you have a nice Thanksgiving? I'm glad you let us know how you are doing. It's important to support each other. yeah, we are bonded girlfriend!!! Love ya!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus