Has it really been 2.5 months since I've last blogged? JHC, life these days has been...complicated, to say the least. I transferred jobs, my mom's cancer came back and she's now in hospice and I've had some other personal issues that I've been contending with. Some things like the job, involved making the big, scary decision to switch to another state agency and although the work is unfamiliar and it's a constant learning process, my new coworkers are wonderful and the fast pace of the work makes the day go by faster. Other things, like my mom's health, that are out of my control...I've had to make my peace with. I went out to Kansas City a few weeks ago, spent some time with her and said my goodbyes. I strongly believe that it doesn't matter what age you are, you're never prepared to lose a parent. It's one of those wounds in life that cuts really deep...luckily, I have a great father, boyfriend and friends to lean on during those times. Especially on weeks that I have IVIg treatment...I guess I should explain what I mean....
About 6.5 years ago, I became very ill. It's not something I talk much about on the blog (or possibly ever have?) but it's something I deal with every day. I was diagnosed with an autoimmune condition called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. I was lucky to be diagnosed relatively quickly by a terrific doctor at Kaiser. It was a terrifying few months of CTs, MRIs and endless rounds of blood work. Finally after a spinal tap came back with elevated proteins they were able to properly diagnose me and start me on the correct course of treatment. They're pretty sure that the flu shot I got a few months prior triggered it. Now CIDP is usually treated in one of three ways: IVIg (immunoglobulin infusions), plasmapharesis, or corticosteroids. I was fortunate that the IVIg worked for me, for some people none of these treatments work. By the time I started treatment, I was using a walker, couldn't drive and if I fell I couldn't get up. It was a sad, frustrating and confusing time for me and there were days that I was angry. There was no definitive prognosis. My dad came out and stayed with me for 6 months. To this day, I'm so grateful that he was able to help me in my time of need.
When I first started the treatments, I was going to the Infusion Center at Kaiser every two weeks, four days in a row but as time passed, gradually my treatments were reduced to two full days back-to-back. Then they were slowly moved out to every four weeks, then six weeks and currently I'm at every eight weeks (2 days back-to-back, 7 hours each day). The treatment slowly brought back my mobility. It didn't come back fast or easily however. The IVIg infusion give me these horrific migraines and often cause nausea and vomiting, this doesn't occur with everyone just with people who are sensitive to these sorts of things...like those who are migraine prone. In the beginning, I was visiting the ER after every treatment and pumped full of Duiladid and Phenergan. They barely made a dent. Aseptic meningitis "migraines" are 10x worse than the worst migraine of your life...and this comes from someone who has a pretty high tolerance for pain. Over the years my body acclimated to the treatment and I no longer have to go to the ER. Usually I can medicate at home with Dilaudid, Butorphanol, and T4's. Phenergan and Zofran are also my best friends on those days. Not to mention strong black coffee, it helps ease the extreme pulsating pain in my noggin. I still get "flu-like" symptoms from the treatment- achy body, fever, and all I want to do is sleep. My treatments are usually scheduled for Thursdays and Fridays so that I can sleep and take it easy over the weekend. Mr.S. is great about cooking on those days, rubbing my shoulders and feet and tiptoeing around- usually I'm pretty cranky. :)
The IVIg treatments are pretty painless. They jam a needle into my hand or arm and run the infusion for about 7 hours. I have to have it run at a slow rate or the migraines come on quickly. It gets pretty boring sitting in the chair but the staff there is very kind and they give you a warm blanket and soda/juice/coffee. I usually bring my lunch, some reading material and my iPad. A few years ago they moved me to the infusion center at Kaiser Roseville where they have free Wi-Fi. The Wi-Fi is pretty spotty but it usually runs well enough that I can catch up on some Hulu or Netflix streaming. The second day is always the worst, I'm usually feeling pretty cruddy and antsy. (Have you ever tried sitting in a chair for 7 hours?) One of the suckiest things is that every time you need to go to the restroom you have to take the whole IV rack with you, what a PIA, and when they're pumping that much fluid in you, you have to go a lot! Oh and I forgot, the IVIg treatments are crazy expensive! 10-20k each treatment. I have to call in before each appointment to confirm that I'm coming in, otherwise, they won't mix it up.
These are the recliner chairs I get to hang out in while getting my IVIg.
This is the handy-dandy IV rack that I get hooked up to.
The stuff is working it's magic though. Looking at me today you'd have no idea that I ever had mobility issues. I know, of course, because I still have issues with walking long distances, walking on uneven ground and trying to go down steps that don't have railings. Down escalators still freak me out a little but it's all getting better slowly. I've learned not to push things...especially when it's really hot out. The heat really seems to trigger nerve issues in my feet and legs, so I have to be careful not to overdo it. Also, I've learned to speak up to friends and family and tell them when I need to take it easy. It's taken me awhile but these days I "listen" to what my body tells me.
Anyhow, I had IVIg treatment last week and was feeling pretty craptacular all weekend; however, on Monday I ventured out of the bedroom for a bit. I had a few Meyer lemons leftover from a giant batch that a friend gave me so I decided to bake some Meyer lemon blueberry bread for a friend (and one loaf for us as well). It came out great, was easy to double and the cheery citrus taste of the bread was like a little bright ray of light on a cloudy day. You know one of those moments when you set down the baggage you're carrying and just soak in the moment and smile. So not to be cheesy or anything but I guess when life gives you lemons, make some Meyer lemon blueberry bread. ;)
Meyer Lemon-Blueberry Bread (adapted from allrecipes.com)