November 2011: Hernia surgery was a success! I have the least amount of hip pain I have had in 7 years and I'm getting stronger! Struggling with joint pain in my hand and feet right now; I am planning to go ahead with surgery to clean up joints in foot in a few weeks. I have a medication that helps with my fatigue- very very expensive but worth it if it continues to help. Everything else is stable with the exception that my white blood cell count is too low so I am waiting to hear if I will have to stop the immune suppression drugs, especially before surgery. This month I have made more strides in listening to my body and establishing habits and routines to help reduce stress for better wellness in coping with illness.
October 2011: Mid-September I found out that I needed a hernia repair and then foot surgery because the joints in my big toes don't bend up anymore (hallux rigidus). So that's 3 more surgeries needed in addition to needing ear surgery if I want to improve my hearing. Whoa- not that put me first into laughing denial and then shocking depression that I've now worked my way out of :-) So I had the hernia repair 9/23/2011. I did not take enough time off work and have struggled with some lymphedema and nerve pain. My sjogren's syndrome, which causes fatigue, dry eyes, and dry mouth has flared up as well. My stomach is working okay so I haven't lost weight lately, thanks to Ensure! I've also been on a few different antibiotics now for various infections but all is headed in the right direction. So right now I'm taking time off of working to take a second shot at healing and trying some different medications to help with my fatigue and also working to identify different mechanism to decrease stress. My next surgery, the right foot first, will be December 19th, if I heal okay from this past surgery.
November 2011 / December 2011: I healed really well from the hernia surgery! It was a success. These months brought many trials related to a new onset of arthritis symptoms in my hands like I have never had before with swelling in my joints as well as a drop in my white blood cells to below normal, which is common with autoimmunity. I had foot surgery December 19th and I am on the mend. I always have a lot of inflammation and more pain in my joints but I am very blessed to be doing quite well. I anxiously await to know if it will help! I am also waiting to see the rheumatologist to know what is going on with my hands as I worry it is the onset of rheumatoid arthritis or lupus type arthritis. It is very different than anything I have had before. On a good note, the holidays have helped me maintain my weight with much less effort, which is good!
April-June 2012: This spring has been a struggle and now we head into summer. It's July already. I had a great spring with a busy American Cleft Palate Craniofacial Conference with 8 papers and board meetings for the Cleft Palate Foundation. However, before I went I could tell I was struggling with inflammation, which is the crux of my autoimmune disease. I did quite well at the ACPA meeting it sent me into a downward spiral of more inflammation, less rest and by the beginning of May I was in the hospital for what they thought was early sepsis or a lung infection. I was discharged 3 days later and since then I have been on prednisone to help control my joint inflammation and chronic cough. I have also since then struggled with a return of pelvic pain and currently wait surgery on July 19th for possible return of endometriosis and/or fibrosis. They suspect it may involve my colon and have prepared me for a removal of my ovary and part of my colon but they do not know what will be involved until they get in there. Bottom line- faith and prayers is needed. I have been able to work but it has been difficult due to pain. My stomach paralysis (gastroparesis) has been bad but it is improving as I went on a liquid diet and increased medications. Prednisone certainly has helped me keep my weight stable. Please pray for quick healing from surgery with pain relief. Pray that I would return to work when it is BEST for healing. Please pray for good stomach function and energy to keep modifying my diet to less inflammatory foods. GOD IS ANSWERING PRAYERS. I will keep persevering- please keep praying!! He has blessed me with great doctors, who need more wisdom and skilled hands and if it is God's will I will be healed fully!!
July 27, 2012: I am 1 week post-op today and it is a good thing! This surgery has brought relief to the pelvic pain I have been suffering with for the past 3 months. I had a laparoscopy done (#4 plus hysterectomy). My pelvic pain is less than it was before surgery- I think- at least at times! My gastroparesis has been very difficult so I am still trying to stick to a lot of liquids and pureed foods. I do not know why it is worse but I have not had a day of meals with all solid foods in 3 months now. My mom has been helping me learn how to cook with a new diet (Paleo diet) and I got a new blender (Vitamix) so I can puree and liquify things magically. I am hoping that this will improve things as well as just the surgery but it could be that my autoimmune disease has attacked my stomach more. I am not sure what is going on but will keep trying all I can and praying! Here is what they found in surgery: my abdominal wall by the umbilicus was adhered to my pelvis with multiple bands that had to be cut down. My left ovary was in bad shape with severe adhesions to the pelvic wall and retroperitoneal. He had to dissect my ureter in order to take out my ovary. I'm glad this ovary is gone because it has caused a lot of pain. I still have the right one! It was lightly adhered to the pelvic wall so he cut those adhesions. This is all very consistent with my history of endometriosis and the good news is there was no endometriosis found, which is really good news for disease treatment. The other thing have in my pelvis is peritoneal fibrosis thought to be from my autoimmune disease. They removed more of this anteriorly that was covering surfaces near my bladder (anterior cul-de-sac). The good news for prognosis is that this time there was no fibrosis in the posterior cul-de-sac or retroperitoneal fibrosis. This is very good! I wish this would all stop and they understood why I create fibrosis but I am always just glad they can treat it and my pain improves! Now I am hoping my stomach will improve! My joints are doing well and I am otherwise very stable on all of my immune suppressant medications. I am hoping to taper off prednisone soon but enjoying pain free joints!!
