Rhupus . . . not as much fun as it sounds

I haven't blogged in some time . . . there is no real reason I haven't blogged. Many days I have said that I need to but haven't had the time or energy. It's been over a month since I blogged and so much happened in that month that I'm not even sure where to start. I have a new specialist and she is PHENOMENAL! I completely trust her and her expertise. She told me I have been misdiagonsised basically because my family doctor just didn't diagnose me, even though a simple batter of test would have told him what was wrong with me, and because my previous rheumatologist just didn't have enough expertise to understand what was happening with my body. I have completely left Pinnacle Health Systems and moved to Hershey Medical Center. The difference is staggering. My family doctor has never truly believed that there was anything wrong with me beyond my weight. I tried to explain that I gave up all dairy products and all soda for over 6 months and gained weight - that I can hardly walk down the steps much less do exercise. And he was convinced I had diabetes, he also was convinced I'd die of a stroke because I'm black, a woman and overweight. Well, it turns out that I don't need blood pressure medicine because now that I am being properly treated and cared for, it has turned out that my blood pressure was that high because of the stress I was under and the pain my body endured everyday. Amazing! And it turns out that my body not dropping weight when I dropped all dairy out of diet was an indicator that my organs were not functioning correctly. So what exactly do I have ? Well, I have to say that I apologize if you've been reading my blog or following me on FB and I haven't been clear. I won't recap in detail but I'll try to make it clear. A spot was found on left kidney. I began seeing an oncologist(I will not say that word, and I think some people were looking for or waiting for me to say that word but I refuse to even consider that it was or could still be in my body). Part of that treatment was chemo. In October, my body functions seem to start breaking down - so they wanted to stop the chemo and allow my immune system to try to work. Before they stopped the chemo they ran a set of test and found that the spot was gone - not even a shadow or mark. The oncologist was happy but has informed me not to go crazy. He believes in miracles but it could return so we should be ever vigilant. In the meantime, I was still in so much pain and I couldn't walk to bathroom from my bedroom without crying. My family doctor was not responding but I got an appointment and saw the physician's assitant. She saved my life because she realized that something was extremely wrong and called personally to Hershey Medical Center and got me into their Rheumatology dept as an emergency. I went through a batter of test and went in to see the doctor who identified my condition as Rhupus. I have rheumatorid arthritis and lupus at the same time - it is sometimes called Rhupus Syndrome. Apparently, it is rare although they are discovering more people who have this condition in this way. I also experience Raynaud's - chiefly it means I get cold but not chilly cold, cold to my bones where it hurts and I cry from just being cold. The cold cause me so much pain that I can't move. But there are ways to cope with the Raynaud's - basically don't let yourself get cold :) But this Rhupus thing - it is a mindblower. O.k. so if I never explained clearly before, hopefully you understand now all my conditions. So during November I began an aggressive regimine of medicines to treat a very aggressive disease that was basically causing my organs to shut down. ALL OF MY MAJOR ORGANS, EXCEPT MY HEART, ARE INFLAMED. And it hurts . . . a lot. My lungs have slight inflammation but no worse than my basic asthma in winter. My liver causes some pain and concern. My intestines aren't really fond of the rhupus and like to tell me . . . EVERYDAY! My left kidney is almost double it's normal size and my right kidney has a cyst on it. My kidneys are drawing the most concern. I have a procedure on my bladder in November but it seems to be just fine. Everyday is different and some days are great but I am definitely learning to live within my limitations not to them . . . going to them is to end up in extreme pain. I stopped my steriod earlier than I should have because I wasn't clear about when to stop . . . that almost cost me my life. I have definitely learned the severity of my condition. I have to be aware that if for some reason my organs don't respond to the daily cocktail and Friday chemo by February, I will have to go to Johns Hopkins to be admitted. Oh, yeah, chemo was resumed 3 weeks ago . . . often chemo is used to treat extreme cases of lupus (didn't know that before). For the record chemo is a frenemy . . . it helps greatly as a friend would but it is cruel and unyielding like an enemy. I am in many ways relieved that I finally have a correct diagnosis and treatment by an expert who calls me herself once a week to check in on my condition, sends me for tests every two weeks and sees me as often I feel necessary to try to ensure that I live and live with a higher than expected quality of life. So many times in the last few months I thought that I had the right doctors and the right diagnosis and the right treatment. In some instances I did but now with a specialist I feel like I am in a much better place. And since switching to this doctor I have been able to walk more and farther. I am in much less pain and not in pain 24 hours a day. But wait . . . there's more. I finally met my nephew Jones and he is so incredibly beautiful and happy and full of the lovin'. His mom taught him how to eskimo-kiss and she calls them doodles so when you ask him for a doodle he holds your face and gives the eskimo-kiss - so gosh darn cute. The first time I held him I just cried. He is magnificent. He's 10 months old and just a manifestation of God. A man I know, who was previously in a long term relationship with a family member, murdered his wife this week. I would have never thought him capable of harming a woman - much less kill a woman. It has thrown so many of us for a loop. So a lot of prayers for everyone involved. And boy does this sort of thing make you re-assess your life and the people in it. But then I recently found out that a female family member is extremely ill and has to have lifesaving surgery. I love this family member with every fiber of my being and am devastated at the news - devastated. A lot of prayer for her and her health. But then I am getting to go to Alabama for Christmas. I get to go to the place I was born and see my family members including my paternal grandmother who is 89. And I am making a pilgrimage to the plantation where my maternal grandmother's grandmother was born. I have not had a vacation since 1999 so I am so due ! Oh but I forgot about Breakfast With Santa ! I was Santa ! My nieces and nephews, dad, brothers and best friend came to breakfast and we had an amazing time. We had french toast, pancakes, grits, eggs, bacon, 3 kinds of sausage, toast and creamed chipped dried beef. We had some majorly happy bellies. I gave a few gifts to my nieces and nephews - and they were estatic. I didn't give anything big or expensive and they didn't care - they just wanted to be together and have fun. They brought me to tears . . . so blessed to have a family like mine. So close to me and caring so deeply for me. But then I found out that one of my best friends, from 11 years of age, woke up to find that her oldest son passed away in his sleep. They have no idea of the cause of death. He is a 16 year old athlete so he seemed in good health but obviosly something was awry. I am hurting and I think most of my pain comes from knowing she is in an inconsolable state of grief and I can not help her at all. I can not help her or her sons . . . and I love her so much and want to somehow help her through this process. Unfortunately, the airline won't refund or transfer my ticket so I have to go to Alabama as scheduled - can't delay the trip. But part of me knows that I will probably serve her best later when other people have finished bringing over covered dishes and calling. But Tim was an amazing young man . . . he was twice the man that most grown men are - he cooked, cleaned, got amazing grades, well-rounded athlete, loving brother, wonderful son - and humble. I am most comforted because I know my friend is a woman of faith and raised her children in the knowledge and love of God. She is one of the best moms I've ever seen - to watch her interact with her children is to see love - they love her and she loves them and it is an active, visible, tangible love. So all of this has caused a crazy emotional rollercoaster. November into December has been sickeness, trife, pain, devastation, horror, love, happiness, family, caring, support and encouragement . . . through it all it has also meant a lot of prayer. Thank God for being raised on a firm foundation of faith, trust in God and belief that God will see you through any trial. My grandmother put it best "Faith is something you use not something you have."