Have me thinking that a change is necessary in my life. I long to be a better mother, a better wife, a better daughter, a better sister and a better friend.
In July of 2010 I started experiencing weird symptoms. A rash that was extremely itchy accompanied with a terrible sore throat and muscle and joint pain. It was weird to say the least and after going back to my doctor and having all kinds of tests and blood work the only thing that ever came back abnormal was my SED rate which measures inflammation in your body.
Finally my primary doctor who was probably sick and tired of me sent me to a Rheumatologist and Immunologist. These doctors did further testing which again showed increased SED rate. They both dismissed me and stated that I would not need to return to their care. The rheumatologist did recommend I follow up with a dermatologistfor my rash.
So on to the dermatologist I go who takes one look at me and says "you have PUPPS!" and started writing out a prescription on her pad of paper. I stopped her and said "okay, with pupps would I have a sore throat and really bad joint/muscle pain?" She said "no." She then did a biopsy of the rash and I finally received a diagnosis.....Urticarial Vasculitis. Urticarial is a hive based rash and vasculitis is inflammation in the blood vessels. I was put on steroids at this time. I was seeing the dermatologist weekly as I was very uncomfortable and swollen. She increased my steroids time and time again....though I knew this wasn't good for my bones it was the only relief I was getting. There were other meds I could be put on however since I was breastfeeding Wyatt I opted not to start anything new since he was only 2 months old.
I continued on not knowing the cause of the vasculitis for a few more months with only the help of the dermatologist who continued to tell me that I have been tested for everything, lupus, lymes disease, hepatitis, etc, etc, etc. She told me that what I have is likely idiopathic meaning there is no known cause and that an infection was the source. An infection that someone else in my family had and when I got it my body went into hyperactive mode and didn't know how to fight the infection so started fighting my own body.......very common to an auto-immune disorder.
I was referred to a rheumatologist at UofM since my symptoms were not only specific to the rash and caused me a great deal of discomfort. However UofM could not see me until mid-December 2010. We decided that it would be good to get a second opinion with a vasculitis specialist at the Cleveland Clinic, so in November we made the 3 hour drive to Cleveland to hopefully get some more answers.
After a very thorough appointment I was again sent for some more testing, this time specific to HIV, Parvo virus and some other interesting yet scary ones......again thankfully all came back negative.....and I was reassured at this time that it is likely idiopathic however the Cleveland Clinic doctor also encouraged me to follow up at UofM rheumatology as he stated I needed further care to manage my symptoms and recommended some new medications. He also recommended a PET scan to rule out any underlying malignancy. So I set up a PET scan and to my surprise a spot came back in my pelvic region......a biopsy was recommended to confirm/rule out lymphoma. This was early December. I was scared and anxious to say the least though trying to stay focused on positive things such as my family and faith knowing that whatever was going on was in the hands of God.
My biopsy was set for Dec. 29th. However the week of Christmas I started to feel horrible. Had fevers and some blood in my stool and my knees along with my wrists were very sore. Over the course of the next several days I was hardly able to move since my knees were so swollen. I had a difficult time on Christmas Eve and Christmas morning since I wasn't able to play with the boys. I was not able to move around much and was in a lot of pain.
I actually went to the ER on Christmas Eve morning and had a CT scan done which revealed that I had inflammation in my recto sigmoid and recommended a colonoscopy for further answers. The CT scan on Christmas Eve also showed that the spot in my pelvis had grown from just a few weeks earlier. Not very encouraging. But again I tried to remain as calm and collected as I could, knowing that being worked up over the unknown would do more damage to my body since I don't seem to handle stress well.
Fast forward to Dec 27th, my mother-in-laws birthday. I woke up and couldn't move. I knew that I needed something to manage both my pain and the swelling. I called my rheumatologist at UofM who agreed to meet me at the office late that morning. I was wheelchair bound at this point and still running the fever. When she met me at the office she was shocked at what bad shape I was in. She had an attending doctor come and look at me as well who also was in shock since my body was so swollen and I was only "30" years old. They both agreed to admit me to have the colonoscopy done asap and also because of the fever, swelling and I was slightly tachycardic.
Monday night I prepped for my colonoscopy and my brother stayed the night with me. The "juice" I was lucky enough to drink tasted like salty pineapple water. I SO enjoyed my brothers company that night. We laughed and talked and he truly now has seen me at my worst. Anyone who has had to prep for a colonoscopy knows what I'm referring to!
Tuesday I had the colonoscopy- went well, loved the drugs! Slept like a baby and apparently was a little goofy after! Kris and my brother thought I was pretty funny! Result was Colitis....better then what the initial thought was which was Inflammatory Bowel Disease.
Tuesday afternoon I had both of my knees drained. Actually I only had the right one drained. They got 35cc's of fluid out of it. They couldn't get anything out of the left knee at this time. I also had leg scans since my legs were swollen and red to rule out blood clot. Thankfully no blood clot but I did have Baker's cysts behind my knees, part of the reason for my pain.
Wednesday I was all alone and my heart started beating faster and faster. It was beyond scary. I called for the nurse who came and hooked me up and it was just climbing. 100,110,120, 130, 140, 150, 160, 170, 180. She left me to go get help. I kept hitting my nurses call light because I was terrified and didn't want to be alone. I was praying and trying to stay calm and I texted Kris that I needed him. NOW!! Thankfully he was in the hospital already and when he came to my room I about lost it. They had the crash cart in there (thankfully didn't need the paddles). They had me all hooked up at that time and were about to transfer me to the cardiac floor. I was monitored for the next two days and had frequent beeping episodes when I made even the shortest walks into the bathroom. We don't know why this happened but I was diagnosed with SVT. They did a bunch of blood after the initial episode which revealed that my phosphorus level was almost zero. I was very weak after this episode and had to drink phosphorus drinks til my levels were normal.
Thursday I had my knees drained again and had steroid injections in both knees. FINALLY I WAS ABLE TO WALK. Though they were still sore I could MOVE....what a great feeling.
They talked about doing the biopsy of the lymph node in my pelvic region however since it was in between Christmas and New Year's they had a skeleton crew so weren't able to do it. It needed to be set up as an outpatient procedure. More waiting!
I was discharged home Friday night....New Year's Eve.....in bed and sound asleep by 10pm. Poor Kris!! Celebrated New Year's Eve 2010 ringing in 2011 all by himself!
My biopsy was scheduled for January 12. Went to the hospital and got prepped for the CT guided biopsy. Taken back with IV ready for the meds when things got a bit delayed. Next thing I know the doctor comes out and tells me that the lymph node had shrunk in size by half and at this time they didn't feel it was necessary to do the biopsy. PTL!!! We will rescan my body in a few months to find out what is going on with that spot.
So to make a really LONG story short about all that has been going on with me I just wanted to write about my experience and how this experience is working or rather GOD is working in my life for a reason.....I haven't quite figured it out just yet WHY He is putting me through all of these trials and pain and discomfort...but maybe just maybe it is to make me a better wife, mom, sister, daughter and friend....MAYBE it's so that I can help other people and realize that if this is the worst I have to deal with then that is okay! MAYBE I will eventually know the reason I am going through all of this, but for now I need to trust in my Lord God and know that he is ultimately in control and that HIS plans for me may never be understood by me. Trusting is all that I can do until we get to the bottom of all of this. Trusting is all that I have to do.....and that in itself can be trying and scary....but it is something I must do for my sanity, my peace of mind and my family. After all GOD IS GOOD ALL THE TIME....ALL THE TIME GOD IS GOOD!
Thanks for listening....I don't think I have really blogged about what has been going on with me and I know there are a few concerned people out there, so as of now this is all I know. It is hoped that the vasculitis will only last for a year at the most and then the goal is that my body will fully recover. For now though I am monitored closely and will try some stronger medications soon as even with the increased dose of steroids I still have symptoms which means that whatever is going on is an aggressive form per my doctor. She says that the closer we monitor my symptoms the better we will be at finding the root of the cause and hopefully stop it from becoming chronic or turning into something more serious that affects my other organs, kidney, liver, etc. Thanks to all of you who have been praying for me as well! Prayers are so appreciated and all we can ask for!
