One-year Anniversary with Imuran

July 19 marked the one-year anniversary of my relationship with Imuran (aka, azathioprine). It’s been one hell of a time. The first two days were fab. The next several weeks were pure hell as Imuran was not going to allow me to keep anything down. MG was being its typical asshole self the whole time. Hair started coming out in a major way after four months or so on it. It was around that time that I started noticing that I was better able to make it through a few extra hours each day, but when I crashed, I crashed hard. Today, thanks to letting go of a major stressor (my former employer), and having a little more time to rest when I need to, things have become a bit more stable. I still crash, but it isn’t as difficult to recover. My hair no longer comes out in clumps, just cycles of major shedding then new growth (all gray ). I still occasionally experience bouts of nausea but all in all, Imuran and I are getting along to fight the MG demon. Perhaps this time next year I’ll be able to walk one or two miles of my former four-mile route around the lake.

Happy Anniversary, Imuran!

Autoimmune diseases: A conversation between my brain and body

The following conversation occurs frequently in this autoimmune-disease-riddled body.


Brain: We should work on these two little projects right now.
Body: No. Let’s go back to sleep.
Brain: We slept for 10 hours last night! You’re just being lazy. Come on. It’s just two things that will take no more than a couple of hours.
Body: No. We’re here on the couch. Let’s sleep.
Brain: I’m not liking you right now.
Body: You’ll get over it after a nap.
Brain: You tend to take epic naps. A nap is only an hour. Next thing you know, it’ll be 6 p.m. and we’ve accomplished nothing.
Body: Yes, we would’ve accomplished resting some more.
Brain: Grrrr!
Body: (Stoic silence)

I’m really tired of these two fighting so much.

 

 

For a fellow myasthenic in need

Since I’m not in a financial position to help, I thought I’d post a link to a fellow myasthenic’s page to extend the call out to others who might be in a better position. Autoimmune diseases really bite and when you have to battle more than one and have them treated by multiple doctors thanks to no one doctor being trained to treat them all, it becomes VERY EXPENSIVE!

Check it out and pass it on to others in your network.

http://www.gofundme.com/arwmvk

 

Mother’s Day … A mixed bag of emotions

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Wishing all the mothers a wonderful Mother’s Day. Will spend time with my mum tomorrow. Making some chocolate-covered strawberries for her. 🙂 Dad hates chocolate so she’ll have them all to herself. 😀

As I get older I find that I’m more and more appreciative that my mother is still around and that I could never have asked for a better mother. I’ve also been blessed with awesome mother figures, including one kick-ass godmother who is no longer here. At the same time, I become very bummed that the title “mother” hasn’t been bestowed upon me. I knew in my 20s that biological kids would not be a part of my agenda thanks to various health issues. I’ve always wanted to adopt a couple of kids—and would still love that opportunity. Adopting children in this country comes with so many obstacles. Plus, finding the right mate who wants to be a father or go through the adoption process is overwhelmingly challenging (no, that’s not the first question I’ve asked guys I’ve dated since my nightmare of a marriage all those years ago). Over time, the “children” question comes up and the response is, “Children are so much work” or “I’m not interested if they’re not ‘mine.’” I’d never consider adopting kids, even older ones, on my own. Living with chronic illnesses, I NEED someone else to help care for them.

I see friends posting the most adorable stories and pics of their young and not-so-young children and it warms my heart, yet, also saddens me.

Despite the cynical, sarcastic side I present to most people, there is that warm, mother-ish side that lurks and comes out at appropriate times. It’s probably the core of my career and volunteering activities—I care and I want to help and nurture others to the best of my ability. Many people tell me to get a pet. Well, for me, a pet is not the same. Sure, they don’t talk back and they love unconditionally but it would not fill the void for me. Plus, the only pet I’ve truly ever wanted is a miniature horse. Whenever I have the space and money, that miniature horse will be mine! Hopefully, by some miracle, kids—even older kids (i.e., pre-teens or teens)—will also be a part of the picture — someone else to help care for the horse!

Okay, that’s out of my system now. I’ll get back to what I should be working on.

Have a fabulous Mother’s Day!

 

Sometimes you have to just let it go and take a leap of faith

It’s been nearly three months since I posted anything here. Being freed from prednisone in January has been a most awesome experience. Imuran seems to be bringing a bit more stability to the MG symptoms. The harsh, multiple-personality Texas winter we just went through nearly did me in thanks to it stirring up lupus-related pain. There were many days I seriously thought I was going to be pained to death! I missed multiple days of work (thankful for FMLA protection). The icing on the cake was the evening my 73-year-old father came over to bring me one of his walking canes! I told him there was something seriously wrong with him bringing a walking aide to his 41-year-old daughter. He chuckled and said we all need help sometimes. To make myself feel a bit better about having to use the cane for a bit, I pictured it being both a support and a handy weapon if I were to need one. 🙂

February rolled around and I was up and down a bit more. One evening after leaving work, I sat down on the sofa at home and realized my whole body was trembling from fighting the elements all day. It had been a very stressful day (surprise). I couldn’t shake my anger and frustration from that day. All the frustration from the many days, weeks, months, years of not really having a full say in projects, scheduling, etc. came to a head that evening. Sure, they told me I could control my projects and have a lot of leeway in how they turn out, but it wasn’t true. I’m always open to constructive criticism and gentle guidance if it appears I’m veering off course, but I realized every time I did something, I was having to redo it over and over again because it wasn’t the way someone else higher than me wanted it to be. If you give me a clear vision of what you’re looking for in the end product, you will receive the end product you desire. If you don’t, well, you won’t.

After an hour of sitting quietly on my beloved sofa, I said to myself that if I do not leave this job ASAP, I’m literally going to die. I will not have an opportunity to go into remission. I had to leave. Period.

I suddenly found myself writing my letter of resignation. Short, sweet, simple. I had to leave to focus on improving my health and well-being.

I slept on it. Woke up the next morning, read it, was happy with it, felt not one ounce of guilt or concern. I printed it, signed it, and carried it to work with me. The person I needed to give it to was going to be out of the office until the following week. Fine. I kept the letter in my locked drawer at the office. I turned it in the following Monday. Supervisor was visibly shocked and insisted I sleep on it that night. She and her supervisor tried to come up with other options for me, including the possibility of part-time work. I commented to them that part-time wouldn’t be less stressful for me since I knew I would be expected to complete 8+ hours of work in 4 hours each day. There was a pause and a silent, non-verbal “you’re right” response. My mind was totally made up but I promised I’d sleep on it one more night. The next day, it was official.

I felt as if a thousand pounds had been lifted from my shoulders. I also got word that another coworker was resigning as well! Turnover has been very high over the last year or so. They’re short staffed and scrambling to refill positions and fill other positions that already needed filling.

Mind you, I had nothing lined up to replace this job. People kept asking me where I was going. My response was, “To take care of me for a change.” Most of the time I received a blank stare in response. Other times I got a high-five or a hearty congratulations for taking the leap to put myself first. Within a few days of turning in my resignation I genuinely started feeling better physically. It was easier to get up in the mornings. My muscles lasted a bit longer each day. I still had my weak MG moments, but they were manageable. I received a lot of compliments from peers that I was beginning to look a lot better. I even received compliments from people I would’ve had to seriously bribe for a simple nice word prior to announcing my leaving! I welcomed the well wishes and accepted them as confirmation I made the right decision.

During this time Lent started. Every year I give up something for Lent. Those things have always been superficial things to me like giving up chocolate or sugar or swearing, etc. This time around, in an attempt to do something that would truly be good for my soul, I gave up something that has been my biggest life obstacle — self-doubt.

Lent started before I made the decision to leave my job. Giving up self-doubt helped me move forward with declaring freedom from the job that was slowly killing me. Any other time, self-doubt would’ve told me that there was no way I could leave a pretty much guaranteed monthly check with benefits. Self-doubt would’ve told me that I would fail at anything I’d try to do to become self-employed again. Self-doubt would’ve told me that friends, family, peers would think ill of me if I did something so radical. I have to admit that the day before the start of Lent when I made up my mind what I would give up, I had a moment of self-doubt — doubt that I’d be able to make it through the Lenten season without doubting myself! Oh, the silly irony!!

Well, we’re a few days away from Easter and I’ve made it through the season without doubting myself and the decisions I’ve made. I left my job on March 31. Pharrell’s song “Happy” was blaring in my head! I was free! I could’ve done a Happy dance but MG was having none of that that day! Ha! I promised myself I’d take two weeks off to spend time decompressing and working to reset my body, mind, and soul. On April 1, I rolled over early that morning at my normal time of waking for the day and out of habit I reached for the Crackberry on the nightstand. I reached over and only felt my personal mobile. Oh the joy! It was a glorious moment realizing I’m untethered from the place that tried its best to kill me. I rolled over and slept a couple more hours.

I got up, excited about my new life, and decided I would go register a business name for a venture I’ve thought about for some time but really had not had the time and energy to put into while being held in captivity.

It’s been two weeks now. I’m feeling better emotionally and physically. I had a visit with my hematologist yesterday. He had not seen me since November. I did not look so great then. Surprisingly, he remembered how not-so-great I looked at the time and commented to me yesterday that I looked great and that he felt I was on my way to a brighter future. I smiled, thanked him, gave a bunch of blood for my usual lab workups, and left. Happy! Now, to see my beloved MG doctor next month. Let’s see what he has to say. He’s the one who told me last summer that I needed to seriously consider making some changes in my life if I wanted to make it. My affectionate name for him is Grumpy Santa. He looks like the stereotypical Santa Claus and was quite grumpy when I first met him. Here’s hoping he likes my gift of feeling and looking better after the grief my body/system has given him as he’s tried treating me.

I’m in super planning mode for my next venture. It’s  A LOT of work but I’m enjoying it. I’m grateful to be surrounded by cheerleading friends and family. It helps keep me from veering off course. I have managed to not push myself to the point of feeling stressed about it — that is something new for me. I was self-employed many years ago for several years and I burned myself out. It’s how I ended up working for others again, letting them run the show. I’m back. I’m ready. I’m doing this myself and I will gladly accept the helping hands that have been offered to get this thing together and moving forward.

It’s amazing how much better one can feel after letting go and taking a leap of faith.

Take THAT MG!