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.



Myasthenia gravis awareness month 2014: My Daily Awareness


June is Myasthenia Gravis awareness month. For those of us with MG, our awareness is every single day. Below is a summary of my journey so far.

Warning: This is a looooooong post. You should probably order a pizza or pop some popcorn and read this in segments.


MG has been more than a little challenging to deal with on top of all the other autoimmune things I deal with and life in general. Lupus also jumped in recently to join the fun. It brings with it pain that can’t be described. I already had celiac disease, asthma, and hypersomnolence (a nicer way of saying narcolepsy). At this moment, I’m battling a nasty autoimmune-related rash on my right hand and around my right eye. The fun never ends!

Back to this MG character. In 2009/2010, I started having some mild changes in my vision. No one could figure out what was going on. I finally just dismissed it as something brought on by stress. I was back in school after 12 years of being out and while working full time. This crazy feat is not recommended.

Time moved along and in 2011 I started experiencing unusual fatigue. Fatigue that was so bad some days I really couldn’t do much of anything. I just forced my stubborn body to finish homework and go to work every day. Various blood tests to check vitamin, mineral, iron levels, thyroid, kidney, and liver functions, etc. were done repeatedly. Nothing unusual outside of rather high platelets, which have still yet to be figured out. My vision was still being squirrelly. The only thing that finally appeared was a Vitamin D deficiency in early 2012. I was placed on 50,000 IU of D3 for a few weeks. Things improved a bit and I was able to last a bit longer each day without collapsing into bed every evening.

Highlight at this point: I graduated with my Master’s degree at the end of 2011!

To add to my fun, I have a growth on my pineal gland that was discovered in 2006. They say it’s benign. We only watch it to see how it’s doing. Changes in my vision and one really insane headache with numbness on the right side of my face back then led the doctor to do an MRI, which is how the growth was discovered. It was pressing slightly on the optic nerve. Things stabilized over time.

Back to January 2012. My doctor (he wasn’t my doctor back in 2006) ordered an MRI to see if the growth could be affecting my vision again. MRI didn’t reveal anything that would indicate it was the reason behind my vision changes this time.

Fast forward a few weeks and I’m barely able to do my regular 4-mile walks around the lake. I was barely making it one or two miles some days. I was still blaming it on stress.

Fast forward four months to April. While at my agency’s annual conference in San Antonio, I woke up that morning unable to move my arms and legs. I could only turn my head. This episode lasted ~15 minutes. My whole body felt very heavy. No numbness or tingling or anything. I could feel my clothes on my skin and the bed underneath me. I just could not move. I finally regained movement to be able to roll over and sit on the side of the bed. I felt a bit queasy and dizzy and terrified about what I had just experienced. I wanted to blame it on stress and not having eaten much the night before. I had a salad at a restaurant the night before. I remembered having difficulty chewing but managed to finish it. I also found it difficult walking the two blocks back to the hotel. My feet kept dragging and my legs felt so heavy.

I drove (yes, I drove myself) back to Austin that morning thinking I would pop into my primary doctor’s office. I was so tired that I decided to stop at a clinic on the way to my home. They did lab work and examined me. They told me I had mono and that I should have my primary doctor test me for myasthenia gravis. I went home and slept the remainder of the day. The next day I contacted my doctor to tell him what had happened. I saw him the following week. We decided to just let the mono run its course for a few weeks and then see how I felt.

I was set to go to India for a few weeks at the end of May to visit friends and was concerned about traveling since I was still not feeling all that great. I ultimately decided to go anyway. I felt I really just needed rest. If I stayed here, I would not rest. I had to travel to the other side of the world to get a break. I still ended up doing some work for the office while in India! Simply sad.

It was a very challenging trip. I was very weak and struggled through most days, but managed to survive. The last lap before catching my connecting flight in Houston back to Austin could’ve landed me in the ER given how stressed, jet-lagged, and weak I was. I was determined to make it back home. I was only a 45-minute flight away from home!


I saw my primary doctor again who ran follow-up blood work. Platelets were the only things out of whack again. I was then referred to a neurologist to be checked for MG.

It would still be another month before the MG diagnosis arrived. During that month, I thought to myself, “Please don’t let it be ALS, MS, or MG” in that order. The results were read off, “You don’t have ALS or MS, but you do have MG.” Hmm, the slightly lesser evil of the three sisters. I was also checked for Lupus at the time since I had an aunt pass away from it the previous year. No signs of it at the time.


The treatment regimen started with Mestinon. It helped my eyes, but nothing else. Prednisone, aka Evil P, was then added and so were 65 pounds in 1.5 years. I know people who’ve gained much more. I can only thank the divine for not giving me the insatiable appetite and constant eating that others on prednisone endure. I would’ve gained even more weight!

Prednisone was not kind to me in so many ways. Setting aside the weight issue, it wrecked my bones. I ended up having my first bone break several months after starting it. I fell one day, thanks to MG legs, and broke two toes! Evil P also landed me in the hospital for my first-ever hospital stay since being born 40+ years ago. I had a respiratory infection that wasn’t responding to anything. My diaphragm muscles decided they didn’t want to cooperate AND my asthma was being a queen bitch. It was an awful hospital stay thanks to cluelessness among the staff treating me. I complained so much about it, the hospital ended up comping the $15,000 stay. Oh but wait, I ended up hospitalized again a month later thanks to IVIG treatment for MG that nearly killed me.

Most people get headaches no matter how much water they drink and how many pain meds and allergy meds they take before treatment. I thought it was just a typical post-IVIG headache that most people speak of. No. The pain was so awful and when I say awful, I’m speaking as someone who has dealt with migraines since the age of 15. This headache was the equivalent of 20 migraines rolled into one. My migraine meds didn’t even touch it! This was the hospital stay that has ended my desire to EVER be voluntarily hospitalized again. I will have to be found unconscious or practically dead by someone who will drag me into another hospital! I had a failed spinal tap thanks to incompetent idiots in the ER who kept me in the ER for 8 hours without fluids. The catheter was in my arm all that time. They gave me pain meds to calm the pain and nausea. Nothing given by mouth AND no IV drip. Why? I still don’t know. They finally admitted me just before midnight. When carted to my room I begged the nurse for anything to drink. She was shocked that I wasn’t given liquids in the ER. The doctor’s notes indicated that I could not have anything by mouth after midnight. It was 11:50 p.m. when I begged for liquids. She snuck me some juice and gave me an IV of morphine. Off to lala land I went.

I woke up the next morning after sensing various blood draws throughout the night. Doctor came in and told me I needed a blood transfusion STAT. I’m still waking up and my first thought is WTF? He said my hemoglobin had been steadily dropping since I was first checked in the ER the day before. It was at a critical level and they were concerned I would soon go into shock. Hell, I was in shock at that moment! I signed the consent form and waited for my blood.

As the blood was transfused, my headache started melting away. I told the nurse what was happening. She looked puzzled, but wrote my comment down. A few hours later the doctor came in and I was still headache free. I thought that would be my ticket out of there. No. I had to stay for at least another day. They wanted to figure out if I was bleeding out somewhere. Over the next 24 hours, no blood was found anywhere. They wanted to attempt another spinal tap but I wasn’t having any more of that. I was in a lot of pain from the first failed attempt and I was afraid I’d attempt to stab the doctor with that damn needle if she tried poking me again.

I was released late the next day. I had to see a hematologist to figure out if the IVIG had anything to do with the severely low hemoglobin.



Two weeks later I’m in the hematologist’s office having 16 vials—not those small ones either—of blood drawn. I asked the phlebotomist what the doctor was looking for. Her response, “Everything.” My response, “I hope he finds something.”

His verdict was acute hemolytic anemia caused by the IVIG treatment, the one treatment I was so looking forward to that could possibly give me back my life nearly took it from me. The hematologist walked into the room with my lab results and commented, “No wonder you feel so shitty! I’ve never seen red blood cells look like yours after an IVIG treatment.” He explained that the reaction is rare. There was some sort of antibody reaction. He said that I had very few healthy cells. Most were blistered and had chunks missing from them. He told me there’s no way I should ever have the treatment again. My neurologist agreed. So now what? Continue increasing prednisone or start tapering it and start on low-dose chemo. I ended up having an iron infusion some time later.

Prednisone was obviously not helping me. The neuro decided to start tapering after I was sent for a second opinion of the MG diagnosis. He started thinking maybe there was something he missed. I went to an MG specialist in San Antonio, had another painful EMG and was told the original diagnosis was correct. She also agreed with tapering off prednisone and starting Imuran or Cellcept. My primary neuro and I agreed on Imuran. The first couple of months on Imuran were simply awful! I couldn’t keep anything down. I was still weak (it can take up to a year for it to show signs of working—if it’s going to work). My neuro started me at 50mg a day. Seeing how I responded so negatively, he dropped me to 12.5 mg a day for a while, then 25mg, then finally up to 50mg. The goal is 100mg/day. I’m at 50mg now and tolerating it.


I’m leaving out all the other things that were going on behind the scenes of all this activity like the battle with my employer’s human resources department to be granted FMLA and to use our sick leave pool. I had exhausted all of my vacation time, all of my sick leave, and all comp time earned! My neurologist and supervisor helped me fight that battle. It was won! I had to sneak work home to attempt to stay on schedule. The agency had a no-work-at-home policy. Long story about that and it’s not what you think. That’s another topic for another time.

A relationship ended during this spell. I was having to deal with friends and family who just couldn’t grasp this crazy illness that left me looking relatively okay most of the time, but was so bloody debilitating. The only time people can see the effects of this disease is when my eyes and mouth start drooping or my speech slows down or my feet start dragging. I have no idea how many times people have said things like, “Oh, you just need to rest. I get ‘that way’ when I’m tired then I’m good to go after a good night’s sleep.’” Then there’s the you-need-to-strengthen-your-immune-system comments. If another person says that to me I will most definitely have my first assault charge! My immune system is already too strong. It works too well! It’s killing all the crap it’s supposed to AND it’s trying to kill me! It needs to chill out, not be revved up. That’s where immune suppressants like prednisone, Imuran, Cellcept, and other immune suppressants come into play.


I have very little patience these days for a lot of things. In February of this year I made up my mind to give up one of my battles—the one with my employer. I reached a point where I knew that if I stayed there any longer, I would not improve and would continue my downward spiral. The place had taken its emotional toll on me. (Check out many of my previous posts about the work B.S.) I felt guilty every day that I wasn’t there. I grew weary of whispers and odd looks from certain coworkers who obviously thought I was faking all this drama. I’m very likely the least dramatic person you all could ever meet. Many of them will never know how much I actually did for the agency because a lot of the work was behind the scenes. I truly don’t care anymore what any of them think. I have zero regrets about leaving the place to save my life.

Although I left with only $10K in my retirement to withdraw and absolutely nothing left in savings thanks to all the medical nonsense, I have felt liberated. Yes, it was a leap of faith. I’ve refused to live with anyone else. I’m still surviving on my own. I’m making a go at starting a business in my career field. Things are slowly falling into place. Divine guidance has been placing certain people in my path to encourage my wild endeavor. I have one client lined up, another one pending, and another one who might come into play in a few months.


Many MGers have to leave their jobs/careers behind due to the unpredictable nature of this disease. One minute we look and feel ok, and out of the blue, we’re floored by extreme, sometimes completely debilitating weakness. Stress, heat, humidity, certain medicines, etc. can bring on a terrible flare in minutes. Sometimes we can recover quickly, as in a couple of hours. Other times we’re laid out for a few days, or, even worse, we can end up on a ventilator in the hospital. Sadly, this disease has taken many lives. It’s not a mind over matter deal. It all depends on the meds we’re on, how our muscles decide their recovery speed, and how much stress we continue or not continue to add to our weakened muscles.

Some MGers are fortunate and have in-home help from family, friends, or hired caretakers. Many of us do not. Chores still have to get done inside and outside the home. If you’re on a limited income, you can’t just hire someone to come in and do the dirty work for you. You have to pace yourself to get everything done. Things that used to take a few hours on a Saturday now take a few hours throughout the week to accomplish. Frustrating? Yes, very! I’ve had to get used to things not being as tidy as they used to be. I’m very OCD. Seeing things pile up and seeing things placed where they wouldn’t normally be placed just hurts my soul! I’m slowly accepting it. Slooooowly.

It’s difficult to explain to friends and family that it’s nigh impossible to make advanced plans for get-togethers and such. There’s so much guilt many of us feel when we make plans and have to bail out at the last minute simply because our muscles are being difficult. We’re not making excuses. I for one do not want to push myself anymore these days to please others. If people think ill of me, they’ll think ill of me. They can kiss my weak-muscled arse! I have zero time for dealing with such non-understanding people.

So many people are dealing with all sorts of crazy issues —health and otherwise. I respect that and will never try to out-issue anyone. We all deal with things differently. Some of us can spend hours talking about our problems with others. Some of us would rather not talk about them. Then there are those of us who don’t mind talking about them for a little bit, but then want to talk about other things or just sit quietly in a meditative state. MG loves meditation. It tends to act out more when it’s over-stimulated.


I have zero idea what my future holds for me regarding my super-charged immune system and its bag of goodies, my career and new business, my social and love life. I can’t say I’m thinking too much about it. I’m determined to do what I can right now for me. I’m weak on the outside and strong as steel on the inside. If the world can’t handle it, I’ll just have to punch it in the face!


A lot of what I’ve written here will find its way into a book that I’ve been very slooooowly putting together on MG. It’ll be finished some 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.




Late October brought terrible flooding to my fair city. Many, many people from the low end of the economic spectrum to the higher end lost most, if not all of their belongings. I work in the world of planning for disasters and volunteer in the world of responding to them. I joined multiple volunteers to conduct damage assessments of houses and duplexes. It was truly mind blowing to turn onto street after street seeing nothing but front yards full of people’s personal belongings—all of them wet and dirty. Clothes, musical instruments, children’s toys, books, furniture, carpet, drywall, flooring, computers and other electronics, …the list goes on.

Person after person was found sifting through these things attempting to salvage whatever they could. Tossing things onto the beds of trucks to haul off, taking frequent breaks to sit in the midst of the rubble, wiping tears and sweat away from their faces. There were occasional smiles and random words of encouragement exchanged between friends, family members, and neighbors. Many of these people stopped to share their stories with us. Some showing us videos they took on their cell phones of the floodwater racing through their streets and into their homes at the height of the flooding. They literally had a handful of minutes to seek higher ground (a second storey if they had one or the attic, and ultimately the roof for some). I talked to one family who said they and several other neighbors in one-storey homes ran and knocked on the door of the closest neighbor with a two-storey house. They all hung out upstairs in her bedroom and the balcony off her room watching the raging waters slam into their homes and sweep up their vehicles and whatever else. Most of them had no time to grab anything.

Many people had lived there for years. They’ve seen the creek flood many times, but never to this extent. Some homes had up to 6 feet of water in them at one point. Most people went to bed the night before with the sound of the rain lulling them to sleep. Many became aware of the flooding when they got up for their normal daily routine. Several people stepped out of bed into several inches of water. Others made it all the way to their bathroom to suddenly find themselves standing in a few inches of water, not thinking it was water coming into the house, but a plumbing leak or something to that effect.

Seeing the devastating results in the front yards was depressing but walking into the scene of the crime— inside the houses—was beyond depressing. A few houses had recently been remodeled. One house had just been put on the market for sale. The sign was bowing humbly under the weight of mud out front. The house itself was a loss.

Nearly a month later, many people are still living in their front yards in borrowed or rented RVs. Some people are braving the moldy insides of their homes as they await insurance or disaster assistance. It’s been rather cold lately. Many are relying on space heaters in their uninsulated homes. Hopefully, carbon monoxide poisoning issues will not be the next disaster.

I’m really hoping they will all be resettled by Christmas.

On my way home from work today, I was sitting at an infamously long light and a panhandler was holding up a sign that simply read, “Smile. God bless you.” He appeared to be late 60s maybe early 70s. Had a prosthetic leg and signs of arthritis in his hands. Normally, I pass these people without a glance. I saw this guy a few cars up from me, making his way my way. Just out of the blue, the face of one of my dearly departed grand-uncles flashed in my mind. This man looked nothing like my uncle, but there was something in his smile and general vibe. I had two dollars to my name (literally) in my wallet. I opted to give the man one of the dollars. My uncle smiled in my mind’s eye. Perhaps he knew the man at some point when he was still around? The man was very happy and wished me a happy Thanksgiving. I did the same.

So what is all this rambling about? Thanksgiving.

I’m thankful I’m not living in my yard in an RV or in a mold-filled home with little to no insulation on these cold nights. I’m thankful that my belongings are not ruined from raging floodwaters and that my only car wasn’t swept away into the neighbor’s yard 10 houses away. I’m thankful that I do not have to figure out how to retrieve data from my computer that was under water. I’m thankful I’m not homeless and that I have both of my legs. I’m thankful I was able to show a few people that there are people, complete strangers even, who do care about their well-being and comfort. I’m thankful I had a dollar to share with someone who needed it.

When I was called by one of the volunteer coordinators to help out, I was given the option of doing assessments or helping in one of the shelters that had been set up. I’m used to working in shelters but had never done assessments outside of training. I opted to do this praying that my leg muscles—and the rest of me—would hold up.

I’m really thankful that my wobbly muscles held up during the day-long assessments and that I didn’t end up doing a face plant in someone’s muddy, debris-filled yard because my muscles gave out. I wasn’t worried about embarrassment. I was more concerned about breaking more bones! (My broken toes from May finally stopped hurting last week!)


Two weeks ago I celebrated my 41st year on Earth. A lot of people tend to see their birthdays as just another day. I personally see the day as a sign of having survived another year of chaos and mayhem and not ending up locked away in some facility (prison or a mental ward). Year 40 was full of all sorts of “fun.”

Here’s a brief recap:

Myasthenia gravis (MG) diagnosis, all sorts of painful tests, two luxurious hospital stays—one of which involved a horrible spinal tap failure and a blood transfusion—iron infusions, IVIG treatment failure, depression, enduring prednisone hell (gained 60 pounds on it), breaking toes (thank you prednisone for making my bones so fragile), fighting with doctors, finding myself on chemotherapy (don’t let anyone tell you that low-dose chemo is any better than regular chemo—it isn’t), the depletion of my entire savings account (I still have 91 cents), the maxing out of my only two credit cards and loans taken out to help cover medical and general living expenses (thank you Mr. Bossman who makes five times as much as I make for not seeing any of us fit for a raise unless we are promoted—there’s nothing to be promoted to at my fair place of employment and I’m $10K in medical debt on top of other debts, Mr. Bossman!@#$@) …the list goes on.

My 41st birthday celebration lasted a full week. Birthday lunches and dinners and a few sweet gifts including a gift card from a few “angels” who have no idea that it provided funding for groceries this month since my entire paycheck went to other expenses. I’m still $500 in the hole this month thanks to medical fun.

My 41st birthday also brought more medical news I really don’t need or want. I tested positive for lupus and found out I have three large fibroids. Hoping the lupus is drug induced and not systemic. Systemic lupus took one of my aunts out two years ago. I’m waiting to have follow-up blood work in a few weeks to see where it stands. If it’s drug induced, it’s likely from darling prednisone. I’m still tapering off of it. Once it’s out of my system, things should return to a pre-lupus state leaving me to continue the battle against MG. If it is systemic, it will likely be treated by what I’m currently taking for MG—Imuran (aka Azathioprine). Not sure if the dose will change or not. I’ll be on Imuran for life it seems. It’s sad seeing so many strands of hair still leaving my head every day.

With the rocky start to 41, I’ve made a decision to get back into the game of looking for another job while still working on plans to be my own boss again someday. I have to improve my finances by some means.

I forgot to mention that I wore my favorite necklace on my birthday. It’s a cool marble that my brother gave me for my birthday in 1996 the year before he died. I smile when I see it. He knew I was slowly losing my marbles while he was still around. He gave me one to hold on to when all the others have rolled away. My last remaining marble—I must guard it with my life.


Let’s see what else 41 is going to bring. 42 is my next goal.


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!


I haven’t posted in a while because I’ve been more than a little caught up in the craziness that is my daily life. Between the MG battle and the daily emotional battle I’ve been having with my job, I’ve been in a very strange headspace.

I think this is the first time in my life I can truly say that I’m stuck and I can’t seem to find the ability to overcome the inertia of being stuck. I’ve even been struggling with my little idea seeds I’ve spoken of before. It’s almost as if all of my abilities to sort and process things are stuck in neutral.

I’ve been meditating and doing self-Reiki to try to get things moving again but I’ve been failing. I’ve been having all sorts of anxiety-themed dreams lately. I can’t get away from the weirdness at work because I find myself dreaming about a lot of it at night or whenever I take a nap. I’m mentally and emotionally exhausted every morning. This stuff is not helping the myasthenia symptoms thus, more missed days of work.

I had an iron infusion nearly three weeks ago and it has finally started kicking in. I’m not as physically tired, but I still deal with the up and down weakness from MG. My neurologist told me that the improvement in my iron levels may help with the treatment of MG. We’ll see how it goes. The azathioprine is removing more strands of my hair every day.

In the meantime, how do I deal with all of this? I have tried all sorts of Jedi mind tricks to deal with the ickiness of my place of employment. The tricks have helped a few times but lately they’ve done nothing for me. I go through most of the motions at work. With every email requesting something from me at work, I feel another piece of my soul being taken away from me to please people I have no desire to please. I go back and forth between feeling absolute angst to disgust to sadness to questioning why I chose to work where I work. Well, I do know that I love being in the business of helping people but in my current role, I can’t really say I’m helping anyone but my agency’s higher powers that be. I have no desire to do this work at another agency. Many of them have the same issues and it would be like walking from the middle of one fire into another one. I want to be out of the fire. I still desire to help people and make a living doing it.

I will soon be going to sleep for the night. I can only hope for a dreamless sleep unless it’s a dream telling me how to become unstuck.