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!

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All was calm, all was bright, and I’m tired

A cure for autoimmune diseases

My Christmas wish: A cure for autoimmune diseases

Wow! I can’t believe how busy I’ve been since I last posted. I’ve had lots of ideas that I’ve jotted down on scraps of paper and my many notebooks, but I’ve yet to write out any of them. One idea I will write up is for new year’s eve/day.

So much has transpired since my last post. I finally made it up to the maximum (for me) dose of Imuran to control myasthenia gravis (MG) and deal with whatever other crazy autoimmune crap is going on (some doctors are leaning toward lupus, others say it isn’t). I say if it walks, quacks, and looks like a duck, it’s a duck. The increase in Imuran has actually helped the joint pain and has eased the gland swelling and random fevers. Plus, MG has been relatively calm. Raynaud’s is being suspected now with the crazy cold, blue/purple, and aching hands and feet when they become even slightly chilled. Whatever … I now LOVE wearing thick socks. I never, ever thought I’d say that being the queen of bare feet around here. Good thing I received more socks for Christmas!

In other news, I’m wrapping up a four-month project as part of my new business venture. I now have to seriously work on bringing in new clients. I’m being faced with balancing rest and quiet time with time of action and work. It’s quite the challenge but MG has a way of reminding me how to do it. Hmpf, who am I kidding? MG ambushes me and knocks me flat on my arse the second I overdo it!

I spent 12 hours with family yesterday for Christmas. It was a wonderful day spent laughing, eating wonderful food, exchanging gifts, and generally enjoying each others company. We had to bury one of my cousins earlier in the week so it was a much needed emotional break for everyone. Despite the fun time, I am paying for it today. It’s nearly 6 p.m. and I’m still in my pajamas. I’m T-I-R-E-D! I’ve not showered or anything today. Two hours after I woke up,  I curled up on the couch for a nap, which was interrupted by breathing issues out of the blue. So, back up I am. What better way to use my time than writing?

Those of us who battle chronic illnesses often struggle with family and friends who just don’t understand the challenges we face every day. I can say that the family side of my world—well, at least my immediate family—has been cool with my situation. I’m grateful! Many of them still don’t fully understand my illnesses, but they’re supportive. Only one gripe, there are still no gluten-free options for me on the dessert table unless I make something. That isn’t a problem normally for me, but MG tests my strength and energy. I managed to make a soup that was requested of me during Thanksgiving. The soup is relatively simple, but I still didn’t have any spare energy to pull together a dessert. Perhaps, I’ll make a treat for new year’s eve/day to go with my popular spiced black-eye peas.

I’ve been invited to a meditation and potluck for New Year’s Eve. The weather might be a bit icy so I’ll have to wait until the last minute to know if I’ll actually attend. I’ll be content either way. If I stay home, I can put on my pajamas early, get my burning bowl together, have my sparkling cider, and be safe in bed by 12:01 on New Year’s day to prepare to go to my favorite place for sunrise (if the weather plays nice) later that morning.

Well, looky here, it’s 6:20 p.m. now. As I mentioned earlier, I’m still in my pajamas, which means I don’t have to prepare for bed. There are serious advantages to remaining in your PJs all day. 😀

It’s 4 A.M. and my body is trying to kill me

I went to bed last night feeling dead tired and was very much ready for sleep. I had been in pain all day thanks to weather changes waking up old back injuries.

Nestled in, three ibuprofen tablets in my system, perfect temperature in the room, gentle music playing to lull me to sleep. I fall asleep. Four hours later, I’m wide awake. My back is killing me again. I can barely turn over due to the pain. I’m still sleepy and tired. I need to sleep. I can’t get comfortable. I’m in the most comfortable bed I’ve ever owned (a tempurpedic) and it isn’t working for me. I’ve had pain meds, I’ve stretched my back muscles, I’ve used heat, I’ve used cold, I even let the shower water pulse on my back. No relief.

My poor body has been through way too much in this life. It needs a break. No more autoimmune crap, no more weird injuries, especially no more little old ladies running red lights slamming into me (I think of her fondly every time my back hurts; I just passed the 18th anniversary of that lovely day).

I gave up on trying to sleep. I slowly crawled out of bed at 4:45 and wandered into the living room. I opened up the curtain to look out over the dark night. I can’t sit, stand, or lie down long. What to do? What to do? I just kept pleading with the universe to ease the discomfort enough for me to take a nap. It didn’t happen. I decided to ease down onto the dark floor of the still dark living room to stretch. Tears and more tears flowed. I just want relief. I can’t take a lot of the strong prescription meds–they either do not work or they bring on other problems. If I take three ibuprofen tablets the pain eases a little, not enough for me to sleep, but at least I’m no longer homicidal.

Just like so many other things, I have to just bloody grin and bear it and wait for another horrible flare of whatever my body throws at me to pass.

After a while, the morning sky brightens, my mood is still quite dark. I try to focus on finishing up another project. I sit with my laptop, I lie on the couch with my laptop, I stand briefly with it. My myasthenic muscles are not very happy this morning because I haven’t rested enough so I can’t stand long. Something has to give. Soon!

Finally, the sun decides to peer in on me in my sad state. Another beautiful morning and day, but I’ll be stuck inside all … day … long fighting with my body.

I hope you have a better day, Sun.

Aural bliss!

I received the latest lovely piece of work from Daniel Lanois today — Flesh and Machine.

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First of all, my ears are extremely happy. Second, this album has lifted my mood. Third, since I have synesthesia, this album is a double joy to listen to and experience. It’s difficult to put into words the colorful images, patterns, and shapes I see when listening to music (and all other sounds) in general. My experience with this album is no different.

All the reviews I’ve read regarding this album pretty much say it all so I’ll not repeat. I’ll just add — go buy it!

Who gave me my nose?

I wrote this a few days ago and didn’t get around to posting it. This blog entry is going to sound like I was smoking, eating, or injecting something I shouldn’t but I swear I wasn’t on anything…well, I was sitting on a bench outside the music building of the university I attended for my undergrad studies. Just sitting there brought back fond memories of music classes.

I’d like to add that while I was writing this, I kept hearing a helicopter overhead but was so focused on writing I didn’t look up until I was nearly finished. The helicopter started sounding as if it was flying lower. I looked up, the helicopter went on its way, and my eyes ended up focusing on part of a sun halo! I think the people who are the subject of this writing sent it as a sign of acknowledgment!

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Anyway, the purpose of this entry is to talk about my ancestors, the people who emerged from many parts of the world and “hooked up” in various manners leading to my existence. It’s been a weekend of All Saints and All Souls honoring. I’ve thought about the people who came before me a lot since last week’s birthday. In fact, two passed-on family members have weighed heavily on my mind since my birthday — two sisters I didn’t get to meet. One of them was stillborn a few years before me and the second one died a short while after being born. I came along a little more than a year after her and barely made it. I knew nothing about either of them until I had to obtain another copy of my birth certificate a few years ago. I never really paid attention to all the writing on my birth certificate except my name, date, and place of birth. In the middle of the certificate was information regarding previous births from my mother. I was stunned to see the info.

I’ve often wondered what it would’ve been like growing up with them or if I would be here had either of them survived. Lately, I’ve been thinking that maybe they teamed up to pass their chi—life force— on to me to help me in those early days on up to the here and now. I was born two months early on the eve of Halloween in All Saints Hospital and weighed all of 2 pounds 12 ounces. My dad said he could hold me in one of his hands! I really wasn’t expected to make it, but the doctor and nurses seemed to take a special interest in my survival—I’m guessing they had dealt with my parents’ previous losses.

I definitely believe in guardian angels. I’m convinced those two sisters are among my guardians. I think my only brother who passed on several years ago is among them, along with a host of others. It takes more than one guardian to manage this bundle of one mess after another. I’m beginning to think I should leave bottles of wine, tequila, and vodka around to reward them for their endless work! I wonder if they’d like Belgian chocolates?

. . .

I’m often awed when I think of the generations of people before me. Their myriad personalities and quirks, skills, talents, likes, dislikes, etc. Hearing my parents talk about their parents and grandparents and commenting on certain personality traits they’ve seen in me and my brother always gives me chills. Some things about us are learned, while others seem to be handed down on the DNA platter.

I was “accidentally” named after my mother’s paternal grandmother. My mother didn’t know her and only knew her nickname for years until she named me. One of her family members commented that it was the same name of her father’s mother — same rare spelling and all! I expressed an interest in writing and journalism at a very young age and was a journalist for 12 years. The great-grandmother I was named after was a writer! I’ve unfortunately not found any of her writings but they do exist with a distant cousin who has yet to cough them up for me.

Here are some of the other gifts I’ve received from those before me:

  • Paternal great-grandmother passed on her nose. My nose looks nothing like my mom’s or dad’s.
  • Paternal great-grandfather passed on his warped sense of humor, desire to help people, and gardening/farming skills.
  • Maternal grandfather passed on his house-designing skills — I’ve drawn house plans, but have yet to build anything — and his love of classic cars.
  • Maternal grandmother passed on her craftiness — and temper!
  • Paternal grandfather passed on his curious and suspicious nature to me. Now I know why I don’t trust many people.

Since childhood, I’ve had an interest in studying certain countries and languages. No real reason known to me why I was interested. They just appealed to me. It seems from DNA tests conducted over the last three years, I have ancestral ties to all of the places/languages I’ve been drawn to. Hmm, interesting. It’s too bad I have no kids to pass all this on to. My niece and nephew will have to carry the torch.

Now, who passed on all this autoimmune crap I deal with???

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!

Songs of Memories and Memories of Songs

Between projects today, I took a mental break by taking an hour-long drive in somewhat quieter areas of my fair city. I plugged in my phone to load up the music library, placed it on shuffle, and cruised.

The lineup was interesting. Four songs in a row brought back memories of certain people and places in my life.

1) “Overcome” by Live took me back to sitting on the couch in a friend’s living room in Brussels as the sun was rising on a cold morning. That song was on the radio at that moment.

2) “Here Comes the Sun” by George Harrison brought back memories of my godmother singing that song to me as she swayed around her living room and I sat on the floor as a little girl.

3) “Crosses” by José González reminded me of a very dear friend who died in a motorcycle accident four years ago. I always feel he’s speaking to me through that song.

4) “Ave Maria” – Aaron Neville’s version, reminded me of my paternal grandfather. It was the first song I heard on the radio right after my father called to tell me he had died. I didn’t get to know my grandfather well, but I feel this song is “our” song.

If I had kept driving, I wonder what other memories would’ve wafted out of the stereo.