I had such high hopes this month to get my blog back to where is wanted it.... However my body had other plans for me. I have been in the hospital for 15 days now! I am awaiting a transfer to Duke hospital. On the 12th of March I woke up feeling really bad and very labored breathing. My primary care doctor couldn’t get me in till Thursday. I knew deep down I was in trouble and that was not an option. I needed to be seen. I was taken to the local ER and transported to a larger hospital from there. We have learned at this point there is some constriction in the pericardium of my heart. The doctors here are not sure if that is the problem. They want me somewhere a rheumatologist and a cardiac team can set down together and decide what is Lupus and what is from a different source. I think this is a wonderful plan. I have been waiting to be transferred since Friday! I miss so many aspects of my old life. I was almost excited when I thought the heart was for a moment there is a procedure that could fix that. The doctors where I am now are scared to touch me because of all of past history. These past few days have been topsy turvy with emotion. Pain levels don’t help that all nor does their favorite drug of choice prednisone.
All though I know it is needed, I really hate taking large amounts of medicine. I dislike even more being stuck in a hospital bed.
We need answers to the source, I don’t want to just treat and manage the pain. That was the last suggestion from the cardiologist. I have made it very clear I am interested in quality of life not quantity. It’s not a life if your barley existing... I feel like that what I have been doing for some time now existing.....
I have tried to find something to be thankful for and joy in each day I am here.... I think that has helped keep me sane lol if there is such a thing.
We celebrated our youngest daughter 19th Birthday in my hospital room on a Sunday. We had a nice dinner brought in and French macaroons brought in for her instead of a cake!
She loved them.... Even though this was not the ideal way to celebrate a Birthday I am very thankful we were all still here to celebrate with her! My oldest daughter has been awesome making sure anything that needs to be taken care of at home is done. So my hubby can be by my side during all of this. He’s my rock and really don’t know what I would do with out him! I am very blessed to call him mine!
She loved them.... Even though this was not the ideal way to celebrate a Birthday I am very thankful we were all still here to celebrate with her! My oldest daughter has been awesome making sure anything that needs to be taken care of at home is done. So my hubby can be by my side during all of this. He’s my rock and really don’t know what I would do with out him! I am very blessed to call him mine!
It is our prayer that by the end of the day tomorrow we are heading to Duke and that will lead to answers and more quality of life!
I want when people here my story they can see Jesus’s all over every aspect of my life. That will make others want to draw closer to Him!
Thank you for stopping by today!
It is my prayer you have a blessed week filled with joy! ~Shellie
I have been unwell for about 20 years, 15 of which have been trying to get a proper diagnosis for SLE lupus. I have most of the markers and my identical twin has it as does my cousin and one of her granddaughters. I have had another 10 vials of blood taken and X-rays of my hands as they are deformed now with arthritis. I should know in a week. I know I have it, I just need closure. I will pray for your lupus and for your daughter's as well. Blessings, Glenys
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