Simply put … depression

The blanket of depression is just getting heavier and heavier. @$$#^!&

I dream of a day of having the luxury of being able to travel whenever and wherever I want again.

I dream of having reliable help/assistance when I need it.

I dream of someone willing to occasionally cook, clean, and pick up things at the store.

I dream of not having people around who promise to help and then disappear.

I dream of people saying what they really mean and not what they think I want to hear.

I dream of being around people who truly accept me for who I am.

I dream of having friends who don’t call me only when they need a favor or want to be nosy.

I dream of having people around who truly appreciate the help I provide them when they ask for it.

I’ve heard countless times from people who say I’m one of the strongest people they know. Inside I laugh. They don’t witness the meltdowns. They don’t feel the heartache and frustration. They don’t experience the inner struggles with worthiness. The don’t hear the daily dialogue between my mind and body of chronic ailments.

I look fine so I must be so?

If I had the energy, I’d just punch the next annoying, nosy, fair-weather friend in the face.

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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.

Freedom from the cube

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The view from outside the cube.

It has been six months since being liberated from a cube in an office setting that I often found limiting and, at times, downright painful.

I left the comfort of a steady paycheck and 100% insurance coverage to save my life—literally. I knew if I tried to stay there I would not survive mentally or physically. Living with myasthenia gravis and a few other autoimmune issues has made me realize that I have to be my own caretaker, advocate, personal attendant, nap enforcer, chef, and employer.

Yes, it has been challenging financially and mentally, but the payoff has been a lot less stress of the office/bureaucratic kind and the freedom to work from my sofa, a café, a picnic table in the park, and wherever else my heart desires. I was determined to remain in the same line of work I’ve been in, but do it on my terms. It’s working! It’s been a slow start but a slow start is better than no start. Yes, I’m playing catchup with a few bills that fell behind during the income lapse, but I’ll eventually be back on schedule.

I have not experienced an ounce of guilt about having to lie down due to sudden weakness or fatigue while in the middle of a project. I don’t have to ask my supervisor if it’s okay for me to leave for the afternoon because I’m not feeling well. I now simply set my laptop aside, grab a pillow and lie on the couch  or walk to my bed and fall into a slumber for however long. As long as I meet a deadline for a project, it doesn’t matter if it’s done in one- or two-hour+ chunks. It will be completed.

I was sitting and working for a couple of hours in a café last week when an elderly man came in and ordered a mocha. He sat across from me. We ended up chatting. He told me that he thought it was really neat how so many people could work in different locations now. He said back in his day you were tied to your desk in an office. I commented that it’s nice actually being able to choose your “coworkers” with this type of setup. In an office, you’re stuck next to the annoying coworker who talks too loud or who interrupts you from a deep concentration for no real reason. In a café, you can plug in your headphones and ignore the people around you and not be concerned with being interrupted. At home, unless you have unruly family members or other housemates, it’s a pleasant environment free from distractions.

Working from home is not for everyone. Some people MUST have social interaction. I have plenty of interaction with the people for whom I’m contracting/consulting as well as my break periods when I text, email, and wander the hallways of social media. I’m not lonely nor bored. It’s PERFECT!

Here’s to freedom from a cube and continuing a forward march.

PS: MG seems to be liking this lifestyle. I haven’t had to punch it in the face lately. 🙂

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