It was a dark and stormy night, day, week, month, year …

20150525_132400_2I haven’t written much lately. There are lots of behind-the-scenes things going on, including the start of the disability-filing process. It has been extremely depressing filling out the papers and answering questions about my health and worth—like I don’t battle with these questions everyday all by myself. Writing out the details on an official document is a painful smack in the face. It’s a reminder of all the chaos I’ve gone through since being diagnosed with myasthenia gravis (MG) three years ago.

Today has been a battle against a nasty MG flare. The day started out okay. The weather isn’t even too bad (humidity ~47%, temperature in the 80s). I had to go to the grocery store for a couple of items earlier today. As I walked through the store for the second item, the dreaded heavy, lead-filled legs took over. I was struck with fear that I was going to end up falling. I had an immediate flashback to May 2013 when I fell and ended up breaking two toes! I had no choice but to walk slowly like I was trying to sneak up on someone. I made it to the checkout lane and leaned on the counter. I was grateful, for once, that the person in front of me was taking forever with checking out. It gave me time to rest before attempting to walk to my car, which seemed to be five miles away.

I made it to my car and sat for quite a while to catch my breath and collect myself for the drive home. I made it home and immediately crawled into bed. I slept for three hours! I felt better when I woke up until I started moving around and then I started going downhill again. Many myasthenics in this situation would check in with their neurologist to share their flares or see if there’s anything more that can be done to help minimize the number of episodes—I’ve been having more than my fair share of flares for several weeks now. Unfortunately, I haven’t been able to see my neurologist since October/November last year. I was scheduled for a six-month followup in April but I’ve had to keep postponing my appointment due to lack of funds to pay for a doctor visit. I’m supposed to have labs done every four to six weeks since I’m on Imuran (azathioprine) and I have one of the world’s most sensitive systems. I’ve not been able to have any labs done since January of this year due to lack of funds. I had to drop my so-called “affordable insurance” because I can’t pay for it. I don’t have 10 kids from as many different men and I’m a legal citizen so I have to pay more for my insurance and receive zero help from The System. Oh, and let’s not forget that I’ll be punished by said System for not being covered.

I’m still trying to make a go at building a business that would allow me to control my hours, allowing me the flexibility to stop and rest when I need to. It’s taking way longer than I hoped it would take thanks to unpredictable flares and not having the help I need when I need it. I’m trying my best to not let it all get to me, but I have to admit I’ve had some mighty meltdowns over the last few months—the latest one yesterday morning.

I’ve been doing some small contract work in my career field. I enjoy it but it isn’t paying nearly enough to help me pay all the bills. Yes, I’ve cut out all miscellaneous expenses. I don’t have cable. I don’t have a subscription to Netflix or any other such services. I have the cheapest Internet plan. I don’t go out. I buy only what is actually needed in groceries. I took myself off of my anti-arrhythmia meds since they were too expensive even on insurance to maintain (no, my heart doctor doesn’t know this). I have a prescription discount card, which cut the price of my Imuran in ~ half, but it doesn’t cut the other medicine enough for me to be able to pay for it at this time.

I must keep some sort of roof over my head. I’m in a “cheap” apartment—well, cheap for my city. I’m still paying on my car. I’ve fallen way behind on several bills and I have zero ability to negotiate with the collectors since I’m not bringing in enough to pay them and maintain the absolute necessities.

With all of that said, I’m mentally gearing up for being denied disability since it seems to be the norm that people are turned down the first time. Also, since I’m still doing some work, they will not see me as disabled. It’s quite the challenge having a disability that, if you work, requires an extremely flexible schedule and limited tasks that aggravate my muscles. That type of job, as far as I know, doesn’t exist under any known employers, which is why I’m trying to create the setting for myself. My mind is too active to allow me to curl up in a ball and live in someone’s spare bedroom until I die. I have to make this work one way or another. I’m willing to die trying to set up the most ideal conditions for myself. What can I say? I’m stubborn.

Myasthenia Gravis Deserves a Flamenco Heel to the Throat

I rarely watch movies, but on a whim I decided to watch Shall We Dance starring Jennifer Lopez and Richard Gere. People who know me well would be a bit surprised that I had any desire to watch such a movie. I’m more of a documentary, adventure, and mystery-theme person.

Surprise! I happen to also be a fan of dance and choreography and I like JLo’s dancing. The real reason I watched it, though, was because I really miss dancing.

Yes, that’s a joy that myasthenia gravis (MG) has taken from me. I used to study Flamenco, Salsa, and ballroom dancing. Dance is not only great exercise, but it always gave me a feeling of grace and freedom. Sliding across a dance floor with or without a partner (often the case in Flamenco dance) is like a moving meditation. My mind could not be on anything else while dancing. I had to focus on not landing on my arse!

I’ve tried a few old routines at home since the evil MG came on the scene and my legs wouldn’t work with me for even two minutes of it. I can only kick back and mentally dance now. As angry as MG makes me, it would be AWESOME to be able to do a five-minute, floor-stomping Flamenco routine! I still have my Flamenco shoes and skirt with the hope that one day I’ll meet up with this elusive character known as Remission. Perhaps, my shoes and skirt will join me to grace a dance floor again someday.

See this heel, MG? I’d like to kick you in the throat with it!


Illness on top of illness on top of feeling forgotten and frustrated

I was one of those lucky saps who managed to pick up the flu this season. I had my annual flu shot in October last year. This evil creature has managed to make my myasthenia gravis symptoms worse over the course of the last few days. The worst part of it has been the fever. I hate fever. I know it’s the body’s way of “burning up” the loveliness attacking the system, but I feel awful. Aches and pains and the occasional clothes-and-linen-drenching sweats are just icky! Today is the first day since Wednesday last week that my body temp has been in the more sane range of 98-99F. It hovered at 102 for a few days. My normal temp is 97.6F. I went through three large boxes of Kleenex (I’ve been sporting a nice Rudolph the Red-Nosed Reindeer nose) and I’ve practically worn out welcome with my bed and sofa. I swear I can hear a low groan from them when they see me dragging my limbs toward one or the other.

This kind of sickness is considerably easier to handle without the daily battle with a chronic illness that alone can make you feel like @$%#. I swear the MG demon has been 50x larger than normal this week. I’ve had the foot drag, the drooping mouth and eyes, the challenge of lifting a simple tea cup to my mouth, the having to hold on to something to be able to rise up from a chair, the effort of trying to brush my teeth and shower, and let’s not forget trying to cook something to eat.

On the topic of health, my so-called “affordable healthcare” is NOT affordable. I’m not a single mother of ten kids from as many different men so I’m not eligible for assistance. I’m simply an entrepreneur who has paid into the system for more than half of her life and has been dealt the challenge of health issues that have drained my savings, retirement, etc. I’m officially out of funds. Actual goose eggs in my accounts. I’m now facing having to find temp or part-time work outside of  home again to keep my very humble roof over my head. It scares me knowing that I’m going to have to dive—hopefully temporarily—back into the chaos of someone’s office to make money until I complete a key part of my business and I’m ready to roll it out to potential clients. Things could have been finished by now but as many with chronic illnesses know, it’s challenging to balance everything in a way that allows for the most productive management of time — time for working/creating and time for resting/recovering.

I know several people battling some of the same chronic health issues but they have the fortune of having someone to assist them, especially at home. I’m not in that category. I’ve let go of having a spotless space. I used to practically detail my car once a month and my apartment every Saturday. I’m lucky if my car gets washed every other month and my apartment gets a cleaning every three weeks. Since it’s just me, it doesn’t get too out of hand. Laundry might pile up for a couple of weeks and the shower gets cleaned once a week instead of after every shower. I have to turn a blind eye to the chaos that is on my living room table. People who know me well would really know I’m not well upon seeing how messy it is. No one has been over to my place since, oh, sometime last summer. One person was going to stop by for a visit, but didn’t. I even summoned some energy and strength to vacuum and tidy up a bit just from the sheer joy of a friend stopping by. I heard from them a couple of weeks later. Just a note saying hi. No explanation. I didn’t even bother to ask. I know I’m not on anyone’s priority list these days. I have to accept that and keep moving on.

I’ve taken periodic breaks from the social media realm, namely that place with the initials F and B. I find myself feeling envious of those with more stability in their lives and tons of people around who at least appear to care. That used to be me. I miss that part of my past. I’ll probably hide until after Valentine’s Day. I will not be tormented by all the beautiful bouquets and candies being gifted. Christmas was bad enough.

Now that all of that is off my chest, I’ll get back to trudging through business work, looking for temp work, and blowing my bloody nose.

I sorely want to punch the flu in the face right now but the bastard MG has my arms.

New Again

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The year 2014 was full of all sorts of emotional and physical roller coaster rides thanks to myasthenia gravis and the myriad autoimmune issues I have. Everything challenged me to determine what my real priorities in life are. I made several life-changing decisions this year that seem to be exactly what was needed to move forward. I’m saying buh-bye to many things to make room for an awesome 2015. Throughout the year, no matter how crazy things got, I kept looking up, as illustrated in the multiple sky pics: Sunrises, sunsets, moon rises, lightning storms, and all the pretty —and sometimes ominous looking—clouds. They kept reminding me that nothing lasts forever.

Happy New Year to All!

Trip #42 Around the Sun

I celebrated another trip around the sun last Thursday. It was an odd day. I‘ve been battling a nasty bout of depression for a while but was determined to at least get out of my apartment and experience the open air and day. I intentionally worked my butt off earlier in the week to have this day off just for me.

I treated myself to a slice of gluten-free carrot cake (my absolute favorite cake). If you’re wondering, I have Celiac disease so everything has to be gluten free.

Anyway, I bought my carrot cake and went to one of my favorite coffee/tea cafés that sits on Lake Austin to enjoy it.

The café is a very popular place with limited up-close parking. There are rarely parking spaces available in their lot. You have to park up a steep hill where there’s ample parking. Regardless, every time I go to this place I cruise the close lot just in case something is open—it’s always in vain. As I pulled into the lot this time, I said, “Please let there be a spot for me in this lot.” I really wasn’t feeling all that physically strong after having walked up the “easy” side of Mount Bonnell that morning to view my birthday sunrise.


I entered the lot, and as I was coming to the end of the lot before I would have to turn around and park up Mt. Kilimanjaro, one little space was waiting for me! It wasn’t on the far side of the lot; it was right up against the sidewalk leading to the café! Score!!

The next request was that one of my two favorite seats be open in the lower half of their outdoor seating area. I snagged a tea and wandered downstairs. Yep, both seats were open. I opted for the covered one since no one was sitting near it.

I sat and wrote for a while. I’ve returned to random personal writing just to clear my head of crap most people around me do not want to hear. Some of you dear readers get to see some of it. Heh!

So I sat for a while then left to run a few errands. Received a handful of text-message birthday greetings. What happened to people picking up the phone to call? Whatever. Well, at least mom, dad, and my sister called me.

The evening ended with me doing laundry and troubleshooting Internet issues at home. Exciting, huh?

I drifted in and out of my bummed state all day. It was one of the first birthdays in a long time that I didn’t have any kind of gathering with friends/family. Illness has taken a lot from me including many people I considered close friends for years. One of those friends has invited me for dinner next week to celebrate. We go way back to high school, 10th grade to be exact. She is one of the remaining diehard friends still around and I love her and her family to bits!

A lot of people just don’t know what to do with me. I no longer drink alcohol (I still crave it like a mad woman at times), I’m a lot slower than I used to be thanks to myasthenia gravis and lupus so I can’t keep up with people who want to do a lot of walking or hanging out that involves a lot of standing around. I also tire easily so it’s difficult to stay up until the wee hours chit chatting about whatever like I used to.

I started reminiscing about some of my favorite birthdays. Birthday #18, I went with a friend to what would become one of my favorite music hangouts — the world-famous home of the blues, Antone’s. I found out that evening the founder Clifford Antone, may he rest in peace, had a birthday a few days before me. As the years rolled by, he would address me with “Hello my Scorpio sister” and give me a big bear hug at the front door of the venue when I would drop in.

Birthday #29 I partied like a goddess rock star in Brussels, Belgium with friends. What happens in Brussels stays in Brussels.

Birthday #38 I had a large gathering at my place. I was living in a much larger space at the time. I threw a birthday/Halloween party and invited 50 people. Only four or five couldn’t attend. We partied until the wee hours. I still had a few guests left over for breakfast the next morning. No, I didn’t eat them. I did cook for them, though.

Birthday #40 I went skydiving for the first time. Mind. Blown. Awesomeness! I had a very small gathering of family/friends at my much smaller space (the place where I currently live). A couple of months prior to this birthday I was diagnosed with myasthenia gravis. I was quite weak, and never should’ve attempted skydiving, but at the time, I really didn’t care. I was only going to turn 40 once and I really didn’t know at the time if I’d see another birthday given how my health was going downhill. My neurologist didn’t know I did it until after the fact. Poor man’s eyes nearly popped out of his head! Obviously, I broke a skydiving rule by not telling the instructor about my illness. I knew they would never let me go up even though it was a tandem jump. I felt okay that morning when I got to the place. No one knows it except yours truly and you all reading this that my leg muscles didn’t want to engage when it came to the landing. The instructor on my back and the guy filming on the ground kept yelling at me to raise my legs for landing. They just didn’t want to work. I truly didn’t know that I had three seconds to impact to get my legs up. That almighty unseen force lifted my legs and held them in the nick of time. The instructor and the film guy hugged me so hard after that I could barely breathe! When they told me how close I was at the moment my legs went up, I couldn’t believe it either. I think that realization gave me the same adrenaline rush experienced once the cold air hit my face upon leaving the plane.

I’m a bit more stable now and, God willing, I’ll be in remission if I’m still around for my 50th birthday, which is when I plan to jump out of another perfectly good plane.

Those memories made me happy for a bit then I went back into that dark place of isolation wondering what will happen during this next year of life. New friends? New love? New healthy body? Who knows? At least I was able to have some carrot cake. It’s not a birthday without it!

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.

Out of Darkness, Into Light

Happy Diwali

Today is Diwali, the Hindu celebration with many stories behind it. In short, it celebrates moving out of darkness into light. I created a very simple rangoli for it this year.

Odd thing though, I woke up this morning not feeling so light, bright, and cheery. I’ve been fighting all sorts of emotions this week. I’m happy to be doing what I enjoy doing, but at the same time I’m still struggling with having to do so much just to make my humble ends meet. I’m really hoping for that big break one day before I collapse from sheer exhaustion.

Regardless how cruddy I feel, I must keep making forward progress … somehow … some way.

My 42nd birthday is next week. I’m excited at the prospect of having survived another year of good and bad chaos without having been locked away in a cell, mental ward, or urn/casket. A lot has been accomplished since this time last year. I am grateful for it all, but man, I just need some real, high-quality rest without a care in the world and the chance to wake up full of life and light!

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


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. 🙂