The last few weeks have been pretty uneventful health-wise. I've been feeling really well, all things considered, minus the ever present exhaustion. Thursday and Friday of this week laid me pretty low, with nausea & headaches but I seem to have rallied this morning which is a good thing. I start chemo on Monday and since I am not sure how I will react to it, I'd like to get the house cleaned, laundry done, food prepped, etc. in case it knocks me out like the pill form did. Other than that, I saw my neurologist this week and after looking at my MRI/MRA he gave me the all clear. My brain looks great, especially for all that it has been through in the last 14 months.
Beyond the medical stuff, life has been busy and good. My oldest became a teenager on the 6th. Where did the time go?
He went from this:
To this:
He's grown into such a wonderful young man, I am so proud of him! There are times when I catch myself wondering how their birth father & grandparents could walk away from them. How could you even want to miss out on all these glorious childhood & teenage years? What could ever possess you to think that not watching your kids/grandkids grow into their own personalities would be a good idea? **sigh** I just have to let it go and be thankful that I am not the one missing out.
Other happy moments in the last few weeks included the beginning of a volunteer stint at church in our Refugee Ministry department and a sweet Valentine's Day dinner with my family. I'm very excited about the volunteer opportunity. I can already tell it's going to be fun and very fulfilling.
I'm looking forward to a quiet weekend with my family. Girls night with my littlest tonight and church with the family tomorrow. God is so good!
A year ago yesterday was the anniversary of my first hospitalization for meningitis. What at first seemed like an out of the blue case of bacterial meningitis soon turned into a medical odyssey. As stressful, scary, frustrating and tiring as the journey has been I can't bring myself to regret it at all. Without this medical drama, I may never have realized how truly blessed I am. God has continually shown me how He provides. He is indeed great!
Last week my best friend & I took a little road trip to Ann Arbor to meet a new Rheumatologist for a second opinion. It was comforting to meet a doctor who showed some urgency about the situation and seemed to grasp that a laid back approach just wasn't going to work. She doesn't seem to think that the Sjogren's Syndrome is the cause of this and she ordered lots of testing to look for a possible Lupus diagnosis. She also didn't think that the Methotrexate chemo treatment was going to make a difference. She is leaning towards Cytoxan possibly in addition to Rituxan. She wants to find a way to get me off of the steroids as it is obviously not ideal to spend this much time on them, especially at these high doses. In the meantime, she placed me on Fosamax to assist in any possible steroid induced osteoporosis. She has referred me on to a neurologist in Ann Arbor and also requested a new MRI/MRA.
I am no longer content to wait patiently for another opinion though, and have a few other options brewing. My neurologist in town here has ordered a special blood panel that tests for encephalitis. The lab is scheduled to come to my house in early January to test me for Anti-NMDA Receptor Autoimmune Encephalitis. I also have an appointment with my GP to get a referral to an Immunologist. I have a fourth cousin who also happens to have SJS. She recently saw both her Rheumatologist & Immunologist and brought my bizarre case up. They were both stumped by the meningitis and highly recommended that I get a full immunologic work up to see if I have any issues on that front. I'm also on the hunt for a new ophthalmologist....someone who will agree to permanently close up my tear ducts instead of placing punctal plugs. My eyes are more dry than ever and the plugs are just a stop-gap measure in my opinion.
Meanwhile....Christmas preparations proceed in the Chase house.
A picture of my food prep/baking list that needs to be completed before Christmas. I suppose it's a good thing that the steroids are seriously cutting into my sleep time. It gives me the time to bake. My kitchen looks like a war zone....all the baking supplies and goodie bags stockpiled on every available counter space.
In addition to food prep and baking, it's been a week of volunteering, holiday concerts and doctor appointments. On Tuesday I volunteered at the Angel Tree gift distribution at the Salvation Army. Last year was the first time I had done it and I love it. I hope that I am always able to serve in the capacity. From there, I went to my baby girl's last holiday concert in her elementary school career which was pretty bittersweet.
I may be biased, but isn't she adorable??
Yesterday was a doctor appointment for my little man and today is one for me. Tomorrow is Aidan's holiday concert at school and I may have heard a rumor that he's appearing as Santa Claus. I don't mind all the busyness....I'm hoping it brings Saturday here sooner. We get our daughters on Saturday and then our family will be complete once more. Saturday we'll be spending the evening with our chosen family and Sunday we will celebrate a Christmas Eve candlelight service at church. I am so blessed to be alive and healthy enough to enjoy all of the bounty God has provided!
