To Kneel or To Sit—That is the Question

Most of us have been there at some point. You’re sick and going at both ends. That is how some of my time has been spent since my last post on the 24th. I don’t have a virus or anything. It’s just my poor body reacting to the Imuran (Azathioprine), a pill form of chemotherapy, I’m taking to combat myasthenia gravis.

My neurologist’s new office staff is on my s#!t list. I called them a few times to see if they could let him know I’m having a lot of GI distress with this stuff and really need something to calm my tummy that, preferably, would not make me sleepy like promethazine. I have promethazine on hand that I use for migraine-related nausea. It knocks out nausea and it knocks me out for 10 to 12 hours! I got really desperate and took one Tuesday night just to be able to sleep in peace. Ginger has been consumed by me in all forms–it just wasn’t cutting it anymore. I even tried taking Tagamet as recommended by others who’ve been on various chemo meds. It helped a little, but not enough to help me keep food down/in for a decent amount of time.

After not getting a response, I called my primary doctor to see what he could offer. He responded within two hours and I had my Zofran prescription in hand.  It helps a lot and doesn’t knock me out!

I’m still having difficulty eating much. I have zero appetite and certain strong-smelling foods that I used to love smelling, set off rounds of nausea. Not cool, man! On the upside, I’ve lost 7 of the x-number of pounds I put on since starting prednisone last year. The blouse I wore today fit much better than it did two weeks ago. 🙂

It’s really not the way I desire to lose weight. I’ll be happy with the seven pounds lost. Since I’m going to be on this medicine for the foreseeable future, I’m happy to hand over several more pounds. Take my appetite but please spare me the quandary of whether to kneel or sit.

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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!

 

Of food and dieting

Food. It’s something we all need to live. It’s sad that a lot of people are emotional eaters—they eat when they’re depressed, angry, bored, etc. Some are addicted to taste. Then there are those of us who have to be forced to eat when we’re upset. Personally, I’ve never been one to eat when upset. Food quickly makes a u-turn if I eat while upset. I like my food to travel one way—south.

I’m one of those people who has always had a sensitive digestive system. Food constantly made u-turns as a child. No, it wasn’t my mother’s cooking. She’s an amazing cook. I’m just über sensitive to a lot of things.

Given my many food issues, you’d think I’d be as thin as a rail. I was…until my late 20s when Celiac disease and a wheat allergy were uncovered. My poor immune system went from being kind of ok to being a war zone and I’m apparently the enemy!

I see so many people around me on various diets. Good luck to them. I’ve never been one to follow the herd. I’ve gone through all sorts of eliminating this and eliminating that over the years. I’ve tried low-carb, higher protein (I’m a vegetarian so this is challenging), no processed/refined sugar, no this, that, and the other. I’m done giving up stuff.  I will eat whatever does not upset my stomach. It’s the Don’t-Upset-My-Stomach diet. If it makes tummy unhappy, it will no longer be consumed. Period.

I have been on high doses of prednisone since October of last year to help with myasthenia gravis symptoms. This little necessary evil pill has added a lot of extra weight to my 5’5” frame. A lot of it has actually been water weight. Regardless, it has been very uncomfortable. I swear I slosh when I walk! My neurologist, seeing that it has not helped me and has only caused more suffering, started weaning me off of it in May. I’m finally seeing some of the weight come off! I’m one of the fortunate prednisone consumers who did not develop the insatiable food cravings. In fact, I think I’ve eaten less since I’ve been on it because my appetite has gone by the wayside. I haven’t even wanted chocolate in a couple of weeks!!! That’s just wrong!

I had one very brief chocolate craving. It went away in about five minutes without me eating any. A miracle, a sign I’m really sick, or just the Universe doing me a favor? I guess I’ll just go with it.

Here’s hoping the weight continues to drop off despite me not being able to exercise the way I used to.

Just punch fear in the face!

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Helping hand

Not sure if I’ve mentioned this in previous posts but I’ve spent the last several months undergoing EMDR therapy to deal with post traumatic stress disorder. One of the things I’ve worked on lately is attempting to make peace with and not have such a strong reaction to memories of nearly drowning 31 years ago. I still occasionally have nightmares of being under water. I love, love, love being around water and on it, but not in it…or even the threat of being in it!

Last week I had to go to the city where this happened. I was on a work trip. I braved a trip to the beach with one of my coworkers to test my reaction to the water. I had to step into the water. I had to allow the water to get up to my calves, if not higher. Well, after much firm but gentle coaxing by my coworker, I managed to make it calf-deep. I hung out there for a minute with my heart pounding and my stomach in my mouth. The water was very choppy. I think I would have felt better had the water been a bit calmer and if there had not been jellyfish hanging out.

I was determined to not have a panic attack. Of all the PTSD issues I’ve worked through, this one has freaked me out the most…even more than my skydiving adventure last year! Submerged in water on terra firma vs. leaping out of a plane at 10,500 feet. You figure that one out.

After the calves-deep-in-water saga, I stepped back far enough to where only my ankles were submerged. I was still having minor internal panic nonsense going on.

One cool thing happened when the water receded the first time — a shell fragment landed neatly on my right foot. I’ve always loved collecting shells, but typically only whole ones. I mindlessly picked up the fragment and placed it in my pocket. It wasn’t until I made it back to the hotel and emptied my pockets, placing the fragment on the table that I realized it looked like a hand. A sign of help? Support? Blessing? Well, it felt positive and I brought my helping hand home. It has a place on my altar. 🙂

Am I ready to go diving? Hell no! Not yet. I’m not even ready to go swimming. Perhaps, I’ll make it to the point of being able to sit in a calm swimming pool…with rails I can hold onto until the panic subsides. 🙂

Oh, and I placed a few drops of water from the Ganges along with some water blessed by the Dalai Lama into the water as a “gift” to the beach.

Sleep and mashed potatoes

I’ve slept and slept and slept over the last few days. I managed a couple of hours at my parents’ house for the 4th of July. Came back home and slept. Went to work Friday. Slept and slept Friday night. Managed to run two small errands on Saturday afternoon. Came home and slept. Woke up and read for a short bit and went to bed for 12 more hours of sleep.  Over the same few days, I’ve noticed my heart rhythm has been out of whack for the first time in a couple of years. Not sure if it’s the prednisone beast causing more chaos or something else.

Some say excessive sleeping is a sign of depression. I don’t feel sad or anything. Actually, emotionally I feel rather neutral. Physically, I feel like crud.  My mouth has been crooked all afternoon. My muscles feel like mashed potatoes today. Muscles are not supposed to feel like mashed potatoes.

MG, I need to punch you and your friend prednisone in the face.

 

I’m so weak, my weak is weak

Haven’t been able to do anything today. Extra weak all day. Slept most of the day, alternating from bedroom to the living room. Can barely lift arms. Haven’t been very motivated to think there’s a possibility of my body ever feeling better. On a whim, I scheduled a consultation with an Ayurvedic practitioner in a couple of weeks. Perhaps the whim is intuition guiding me because my brain is sure not up to the task lately. I got a good vibe from her. We’ll see what treatment options she’ll offer based on my entire health history (she’ll have her work cut out for her!).

Things have to improve soon before I just give up on this battle.