I'm reposting this, sorry it came out in such a small font the first time. Dont know what happened.
Hi Commonsns1, (Bruce)
I'm a newbie here too. I've had Lupus for 26 years, diagnosed at 18 years old, right out of high school.
I read your post and my heart aches for you. You are so right, the emotional price of this 'distaster of a disease' is huge. It is overwhelming with the ups and downs and the loneliness, and the anger, and the frustration. The feelings that no one is listening to what you're really saying, no one cares that you're hurting. The emotional part of this disease is just as draining as the physical things we go thru.
I have to agree wholeheartedly with your statement that "the worst thing is the road to diagnosis, and a close second is everything that comes after". Boy, you hit it on the head with that one. That sums it up perfectly.
Thru the course of my Lupus, there have been times I've had to be on narcotics for the pain. Like when my hips were deteriorating and I needed to have them replaced. I was only 22 or 23 years old, so my Orthopedist wanted me to try to put it off as long as I could, cuz they were having some complications with the early hip replacements and the glue they were using. He told me that they were making great strides in new technologies and if I could hold off, he felt it would be better for me. Of course, he told me that we would do it at anytime if my pain was too much. I was young and very scared of having my hips replaced and going thru such a major surgery, so I eagerly agreed to hold off. Then a few more years down the road the pain got so bad I had to start taking strong pain meds to get thru my day. Then a few more years go by, and I had to take 2 strong narcotics, round the clock, to stay on top of the pain. When I finally worked up the courage to schedule my first surgery, I was surprised with a pregnancy. In order to make it thru the pregnancy with bad hips, I was weaned off the oral narcotics and put on a continuous epidural that delivered low dose morphine directly to my spine and hips, so baby wouldn't be born with withdrawals. Long story short, after the delivery, I went back on oral meds. It took me 4 years to build up my strength and gain weight before I could actually do the first hip replacement. The next year, I did the second one. Thru all of this, I experienced, with every new Doctor that got involved, the humility of being accused of abusing pain drugs. I was labeled a drug seeker. Even though I assured all my Docs that I wanted nothing more than to get off these drugs and have my life back, they did not trust me. That hurt me so much!! I finally found a Primary Care Doc that was wonderful. He listened to my whole story, took "all" my history into account, and helped me to recover from my surgeries and slowly, very slowly, wean me down off the pain meds. I told him how afraid I was of suffering withdrawals when it was actually time to completlely get off them, and he totally understood. He allowed me to cut back on one pill at a time, very slowly over six months, and made the taper so slow that I barely noticed it. It made a world of difference in my recovery to have a compassionate, caring, Doctor that listened to me.
I understand completely how awful it feels to have Docs, nurses, pharmacists, etc. think you are an addict. How humiliating. It hurts so very much. It's an awful feeling when you know that's not what you are at all. I am so very very sorry that you have to endure this.
I'll try to finish this up. I also understand the part about "not fighting anymore". I also reached that point. Not that I gave up the fight against Lupus, I just ran out of energy to have any "fight" left in me. I was so very tired and frustrated and sick of battling the flares, that I just sort of went into survival mode. I just tried to maintain. I totally understand the feeling of no "fight" left.
One last thing. It always amazes me that Docs are so reluctant to diagnose Lupus in someone, even when other family members (esp. Mom) has been diagnosed. It seems like a no brainer to me. What's the big fear with diagnosing someone? It puts a name to your problem and then you can move forward treating it. We know (Docs included) that you may never test "positive' with their diagnostic tests, yet you have this history of symptoms and problems. Why not assume it's Lupus and work out a course of treatment. If only Docs new how much added stress they put on us, by holding back with the diagnosis.
I hope that you will find some relief from your many symptoms. And, again, I'm sorry for all you're going thru. I'll send a cyberhug your way and some smiles to cheer you up. :lol: :lol: :lol:
Hang in there, and take care. I hope today is a better day for you!!