Trying to make peace

I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.

After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.

On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses  who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.

I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.

With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.

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That’s a lot of hair!

ImageThis is the first of several clumps of hair that have decided the Azathioprine, a brand of chemotherapy, is too much for them to handle. I’ve had mixed feelings about the idea that I could lose some or all of my hair thanks to having to take this medicine for myasthenia gravis. I’ve always had very thick hair. In the past, I’ve grown it halfway down my back. I also ventured into a very short cut once–that was a bit extreme and not accepted by myself or anyone around me! Even my dear godmother told me I needed to grow it back out-STAT! Ha! I let it grow back out. These days I opt for a shoulder-length bob. Perfect length. You can still have different hair styles. It’s very rare that I do anything with it other than wear it down or occasionally pull it up into a pony tail.

I’m not a hat wearer. I love admiring hats on other people, but I’m not a fan of wearing one myself. I love scarves and I have a gazillion scarves in my collection. If all my hair goes, those scarves may become my best friends. I have no $$ for a nice wig and my bloody insurance doesn’t cover them. Go figure. I’m set to be on Azathioprine every day for the foreseeable future.

I’ve been battling self-esteem issues of late and the idea of perhaps being stared at due to lack of hair will just contribute to my growing discomfort with everything that has been going on.

I know it’s all superficial, and there are so many worse things I could be dealing with, but it’s the little things that can break you down over time. If I were a guy, short or no hair would be just fine. But, alas, I’m a girl and most of us like our hair–even the bad hair days are better than having no hair.

MG, if only I could punch you in the face right now! My stupid hand muscles are too weak today to form proper fists!

Of Azathioprine (aka Imuran), Nausea, Ayurveda, and My Fragile Nerves

I’m now five days into my latest treatment for myasthenia gravis. It’s azathioprine (Imuran). I take it at night a few hours before bedtime. Well, I woke up Saturday morning feeling ok and thought, “Hmm, this isn’t bad. I think we’re going to get along just fine.” Sunday rolled around and a few gentle waves of nausea kicked me around. Nothing a little bit of ginger couldn’t help me overcome. Precious Ginger didn’t ease the issues I started having on the lower end of my GI tract.

Monday morning comes around and I’m preparing to go to Houston to see an Ayurvedic doctor. A tidal wave of nausea hit and another round of runs from the lower tract hit. Panic sets in and I start thinking there’s no way I’m going to make it to Houston!

I was delayed in leaving home by nearly an hour. Things started calming down and I said a Hail Mary and an Om Namaha Shivaya and proceeded with the original plan to see the Ayurvedic doctor.

Miraculously, I was only 15 minutes late! I called her 15 minutes before my appointment time to let her know I was running late. It wasn’t a problem. Another wave of nausea hit just before I arrived at her office. I munched on more ginger and got the system to calm down again. They provided some tea when I arrived, which also helped.

The consultation lasted for nearly 1.5 hours. She did an assessment of me and asked me questions about my health over the years, my parents’ and siblings’ health and my current life in general. It was funny when she started asking me about work. She noted that my demeanor completely changed. That obvious, huh? Oh well, I’m trying desperately to make changes in that area so that I can become my own boss again. Five levels, six if you count the federal people, of bureaucracy above me and each of them changing their mind every 10 minutes affecting everything I work on is just more than I can and am willing to tolerate these days—on top of this evilness named Myasthenia gravis.

Anyway, at the end of my consultation, the doctor gave me a month-long prescription of sorts to help strengthen my constitution so that I can be prepared—perhaps, in a month—to go through a cleansing process called panchakarma. I’ll let you google panchakarma instead of attempting to explain it here. I’ve read about it over the years and know a few people who’ve done it. It was a very life-changing process for them. They both felt much, much better overall afterward. They were not dealing with autoimmune issues like me, but had other issues.

My prescription includes continuing my morning meditations, belly breathing once a day, three cups of non-caffeinated herbal teas, massaging with sesame oil (I prefer mustard oil), and eating yoga. Yes, eating yoga. In other words, being completely mindful of your food while eating it. Zero distractions. Only focus on the food: the texture, where it possibly came from, the taste, how it’s healing/helping each cell in your body. It takes some time to adjust to this eating technique, but so far I like it.

Something like this could really help reboot my poor, rundown system but we have to be careful to not throw me into a myasthenic crisis. She seemed very knowledgeable of my  situation so I do not fear she’ll offer me anything that could harm me. I have to keep a daily record of everything I do and feel. I had already been keeping a daily medical journal for my neurologist. I just have to add the emotional feelings part to it for the Ayurvedic side. I also have to write down 10 incidents or events from the day and note whatever emotion I associate with them. This is challenging. When I finish with the list, I turn the paper over and only write down those that evoked a positive reaction from me. Then I have to shred the paper and throw it away. Yesterday’s list was mostly negative. The day before was more positive. Not sure what tonight’s list will look like so far.

I’m really, really hoping that this new weapon against myasthenia will work for me. I’m quickly running out of options. Even with this realization, I’m trying to remain optimistic, but must admit it’s become more difficult every day that I miss work because of excessive weakness and now severe nausea. I often feel helpless and lost, and of course depressed. A lot of my coworkers are stressed by the monstrous volume of work these days and the lack of pay for it. Stress leads to edginess and mean words and actions. It’s not an environment conducive to productivity. I’ve personally given up on happiness there. I smile, but there’s no happiness behind the smile at all.

My new Myasthenia Gravis Weapon — Azathioprine, aka Imuran, aka low-dose chemo

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MG, meet Aza. Aza is going to punch you in the face!

 

So, as of the time I’m typing this, it has been two hours since I took my first dose of this little pill named Azathioprine. We’ll call it Aza. I’ve been told it will likely take 3 to 6 months before I notice any improvement in my muscle strength. Hmmm, that’s a long time. If it were to show signs of working in three months, it would be a nice birthday gift to me. 🙂

I’m praying none of the hellish side effects hit me at any point. I’ve spoken to many people who’ve been on it or who are currently on this and it has been 50/50 with the most common side effects (nausea, vomiting, hair loss, development of cancers). I can deal with hair loss, just not the other things.

I’m being cautiously optimistic about this new weapon. I was over optimistic about IV immunoglobulin treatment earlier this year. That process landed me in the hospital for three days and led to a blood transfusion thanks to the development of acute hemolytic anemia. This new med also has the possibility of causing a rare form of anemia. I’ll have to go in for blood work every two weeks to monitor liver function and red and white blood cell counts. Fortunately, I have no issues with blood draws. I like vampires! There is a cute vampire at one of the labs I frequent. 🙂

So MG, I’m punching you in the face with Aza and stabbing you with needles every two weeks. Take that!