Hey, I have been away for quite awhile now.
My last post to this board was in mid April and so much has happened since then. It has been a little crazy. On April 16th I was at work and had a grand mal seizure. Somehow during that seizure I destroyed my hip joint. After they transported me to Baylor University Hospital I woke up in ICU and had to have my hip joint rebuilt with 12 pins and 2 brackets but they did it! The seizure was a really a scary thing. I had never had them before. I had been having a really hard time sleeping (only 2-4 hours a night) and then having alot of drowsiness accompanied with alot of dizziness.
I was out of the hospital 9 days later and completely unable to get around at all. It took 6 weeks before they dr would agree to let me drive or return to work at all and only on a part time basis. My employer had been very supportive and understanding for the last 5 years of my 7 year employment with them. They watched my decline and tried very hard to keep me on. However, you can imagine that last episode shook them up pretty bad and they sat me down and told me that I could not return to work. They felt that my working was literally killing me. My doctor actually agreed and strongly recommended that I stop working and file for disability. This was not by far the first time this recommendation had been made to me by my dr. but I really wanted to continue working and frankly I needed the money and insurance. But, considering what had just taken place I had to give in and quit. I had been pushing myself for so long that I missed seeing that line where I needed to stop. I just felt like if I had made it through the other day where I felt so horrible, I could make it through this one too. This went on and on with that bar being set at a worse and worse level. Till I was killing myself.
I have gone through bouts of frustration, depression, relief, fear and loneliness. I am sure I will go through all of those over and over. But it is what it is, right? I'm sure that there are many others on this board that know exactly the array of emotions we feel going through this.
The long term use of steriods had finally done the damage to my bones. It really must have gotten bad fast because I had actually had a bone density test about a year before and I was diagnosed with osteopina (sp?). I had been having multiple rib fractures for years. But the kind of damage I did to my hip was unbelievable. My femur had busted through my hip socket about three inches. They had to rebuild my hip joint and a few bones in that area as well. (the ortho surgeons were so proud of their work, they were breaking their own arms to pat themselves on their backs)
Talk about irony, my sister also has lupus but our symptoms are very different. I had my own issues with my organs and CNS problems and she had hip joint problems and seizures. Well... you see the irony here I am sure!
I am still on prednisone but we are trying to lower it down. My rheumi needs to get some "clean" blood work from me. He said with the chemo and all of the prednisone, in really high doses for an extended period of time, this is very difficult. He said it is blocking the antibodies and he needs to know what they are so he can address my disease in a correct manor. I am down to 6 mg a day now. My pain is worse by far ofcourse and that fatigue is unbelievable. But I am not working. Before, I had that additional worry and it is actually a huge load off my shoulders. I have applied for ss disability. Ofcourse denied on my first request so I am getting an attorney to appeal it. The sad thing is they had me sign a release for them to get my medical record to make their decision. My dr had them all ready for them and they never even requested them. They just out and out denied me!
I am back on the neurontin. It helps alot with the fibro pain and it is suppose to help prevent future seizures. I begged them to do this so I wouldnt have a seizure disorder on my medical record. You see, if you get that on slapped on your record, your driver's license is suspended for atleast 6 months. I am now also on some really strong pain medication to keep me "comfortable" and keep my bp from sky rocketing any more that it already does. Now I am on methadone (the long acting) and narco (short acting). Which is better I guess than what they had me on for the first few months. I was taking Oxy for the long acting and dilaudid as the short acting. But to be honest, I was still pegging a 7 on the pain scale! Now it actually comes down to a 3 on good days.
I'm not really sure what comes next. My CRP and ESR are rising so we are holding our breath. Hopefully he will be able to get some answers very soon.
I hope you are all doing well and it is good to be back online and posting. I now have a laptop so I don't have to sit at a desk to be online. That was the reason I was off for so long. We had a computer but first I couldnt get around much and then sitting at the desk for any length of time was just not something I could do. Now, I have a little laptop table for me to be able to use in my bedroom and I can prop up some pillows and be comfortable while online.
Take care and as I said, glad to be back! Vee and Goldenwings, I hope you are both doing well. Thank you for the years of giving me a shoulder to cry on and an outlet for my frustrations at times.