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.

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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!

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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

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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.

THE MYSTERY

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!

THE PATH TO DIAGNOSIS

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.

TREATMENT AND MISTREATMENT

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.

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THE VAMPIRES

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.

BEHIND THE SCENES

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.

LEAP OF FAITH

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.

THE COST OF THE DISEASE

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.

THE FUTURE

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!

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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.

41

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.

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