Sorry I have not been able to post in such a long time. I was hoping that my life would hold no medical surprises for me after the new year, but unfortunately several things popped up...
In January I saw a rheumatologist who did a very thorough workup looking to see if she had any ideas as to where all my bone pain and fatigue originated from. After almost 20 tubes of blood were drawn, I was found to be borderline lupus and everything else came back negative. She wanted to watch my labs for lupus and was not convinced that was correct, yet I have nearly every symptom of this condition. Until my level goes up, she chose to diagnose me as having fibromyalgia and/or signs of clinical depression. Ha ha ha. As much as I like this physician, Steve and I as well as many of my friends do not feel that her final diagnosis is right. Fibromyalgia seems to be diagnosed on anyone they can't find a real diagnosis for and I have no symptoms of it -- no trigger points of pain. In addition, I tried the medication that treats this and was absolutely no better. I'm sure there is some depression in there as I have some SAD (seasonal) issues as well as a much changed lifestyle over these last few years. The dark dreary days don't help anyone's mood, but when you don't get light in your eyes it makes things even drearier. She looked at my skin and felt it warranted another trip to the dermatologist as she had never seen skin conditions like mine before, and wondered if it was some sort of pain-related syndrome.
After seeing the skin doctor in February, he knows of no syndrome related to pain and skin, yet found an area on my hand (an unhealed scab). After a biopsy, it came back positive for squamous cell skin cancer. So, I was scheduled for Mohs surgery later in the month.
While waiting for that, I saw my eye doctor who noticed some changes on the tumors of the retina and performed laser surgery to treat that area. Unfortunately, this is going to cause more blind spots.
Mohs surgery was simple. (For those of you not familiar with Mohs, it's an outpatient procedure where multiple layers of skin are removed, one at a time, until there are no inflammatory or cancer cells present. The reason it's so lengthy is because you have to wait an hour between each removal for the lab results.) After eight hours of Mohs surgery, the only disappointing part was ending up with a 2.5 inch incision on my hand and it went very deep, all the way to the tendon. A biopsy was taken of a suspicious area on my left shoulder. This biopsy came back as basal cell.
Things were going well until Day 10 after Mohs surgery when I woke up and found my hand red, swollen, painful, and double in size. It was a Sunday and I therefore called my doctor at home. He phoned in an RX as he felt it was an infection and said if things worsened or stayed the same, to come to the office in the morning. As my luck would have it, the next day I woke up and my arm was 3-4 times its normal size, all the way up to my forearm. After taking a look at it, the doctor recommended a direct admission to Northwestern Memorial for further treatment. My lovely friend Darlene took me to the hospital. Steve was leaving for the airport for business but the doctor told him to cancel his flight/trip. In the meantime, Darlene drove me straight to Northwestern and stayed with me until 10pm that night, and Steve came home and got the kids situated. Needless to say, this was Valentine's day. So Darlene and I both sent heart-shaped pizzas to our families to celebrate without us.
While they were home enjoying, Darlene and I literally had nothing to eat as doctors were running in and out from every specialty. After 12 needle sticks they finally got my IV started and labs drawn. I was told I had a staph infection as well as several other bacterial infections which required IV antibiotics. It looked like I'd be camping out for at least 3-4 nights at the hospital again. Waah... This time, they put a picc line in on the following day, rather than waiting until discharge. Luckily, I did not have what they all feared, compartment syndrome, as it would have caused me to have permanent loss of a part of my arm. They made me a mobilizing cast which totally made it less painful. After two days the swelling significantly went down. It took at least an additional month before returning to almost normal.
Wishful thinking, is it almost spring yet?
In March, I remained on antibiotics for the staph and other infections for another two weeks at home. I had a relatively normal month yet still continued with bone pain and still had fatigue. I spoke with the rheumatologist who put me on an antidepressant, which I took myself off of one week later as it made me shaky and I had difficulty sleeping. So I just figured I may as well get used to the pain and fatigue and try to move on with my life. I schedule little outings with days in between, and do projects around the house with frequent breaks until they can figure out a better diagnosis.
My kids were very excited for spring break the end of March, yet I overdid it and started getting sick again. The whole week I had a fever, bladder infection, headaches, and increased fatigue. After a week feeling like this and my antibiotics not helping, I took a trip to the E.R. where they said I was on my way to being septic again like last August, as I was not on enough antibiotics. Again, thank you Darlene for coming to my rescue and taking me to the hospital and again spending the evening with me. Steve cut his trip short and came back the following morning.
I hurt my ankle April 8th while walking my dog on our first nice spring day. I twisted it and thought it was just sprained. After several weeks of limping and swelling of my ankle and calf area, I decided to call my favorite foot doctor, Dr. Weil. I just saw him on May 6 and he diagnosed me with a torn achilles tendon. I'm scheduled for an MRI Monday morning to determine if it's a full or partial tear and to determine the treatment. As for now I'm back in my lovely boot.
In addition, in April, I revisited the eye doctor, Dr. Cohen, who had wanted me to return several times for recurrent laser surgery, yet I was unable to go due to being in the hospital. Thankfully, this was a good thing and the retinal tumor area appeared to have responded well to the initial laser and was unchanged. Unfortunately, though, the tumor on the optic nerve is again somewhat larger and there is no treatment still for this. He said he was going to do a search and had some upcoming conferences to see if there was anything in the works for a systemic drug that may stop vascular tumors and hopefully even shrink them.
Then I had Mohs surgery on my left shoulder. Ten days later I had my sutures removed and I'm happy to report I had no issues with infection this time around. The recent MRI of my ankle showed a split tear of my tendon, which is a very rare condition that does not require surgery. I started physical therapy and will continue to wear the boot for at least another six weeks. I see the eye doctor tomorrow and get a tooth crowned on Tuesday.
On a happier note, during the month of March, we decided as a family it's been way too long since we've taken a trip together (three years in June). So, we are all headed to Disney World in Orlando for a week of sun and fun and hopefully no limping. The kids are looking forward to school getting out June 2.
Alyssa made her First Communion on Saturday, May 14. Aunt Jan and Uncle Jim from Texas flew up to attend a wake and funeral and while they were in town we ended up throwing a last-minute Communion party. Alyssa was so excited; she got to carry the gifts up at the church and looked like a little bride. I will post pictures on this site when I get them back.
The following day we spent with family. Unfortuately, Tyler was unable to attend due to a travel soccer game. On a positive note he scored a goal and got an assist, but he broke his toe in the process. It was great to see the family again since I have not seen everyone since Christmas. Thank you Stacy for going that extra 40+ miles to pick me up, and Winnie and Lou for bringing me home. Next, we look forward to Alyssa's tap and hip hop recitals June 4 and 5. We bon voyage June 6 for Orlando. And, having both kids heavily involved in soccer keeps us busy. In addition to Tyler playing for the travel team, the Magic, Alyssa plays rec soccer.
I have learned my lesson on waiting so long between posts, as more than five months have elapsed since my last one. I promise you all this won't happen again. Please keep in touch and I hope to see you all this summer. Hope you enjoy the end of the school year and are looking forward to summer.
