DEVO as seen from some make-shift handicap seats at the Fox in Oakland
You may have noticed that there were no posts this whole summer. My sickness has been very difficult to manage lately so all I have been able to do physically is....well....nothing. I applied for Social Security Disability and am in the process of that still now. I had to fill out many, many forms. One of those forms asked me what I do on a typical day then they provided two and a half lines to do so. Luckily (yeah right, lucky me) I was able to get my whole average day down in the provided space. It went something like this. I wake up around noon, I use the restroom and take my medicine. I lay down, use the restroom again, take more pills and go to bed at about midnight.
Going into some sort of machine after they injected glowing stuff into my veins. Ending up in the hospital is not uncommon for me after attending a concert.
That is pretty much exactly an average day for me. Sure, I do things like go to concerts and walk my dog but these things are not the same for me as they are for every other person on the planet. Walking my dog, for example, means opening the front door, he walks himself around, then I call him, he comes in and I close the door. So really, all I am doing is shuffling to the front door, opening it, sitting in the doorway for 5 minutes, using all the energy I have to raise my voice so my dog can hear me, closing the door. Then I use borrowed energy to make it back to my couch. Concerts are a whole different animal as well. I do all that is in my power to make it to concerts because it is a release for me. The music in my ears lifts my soul and spirits. The feel of the bass and the vibrations of the sounds pulse through my body. Those vibrations turn me into a human tuning fork which sometimes can totally transform how my body feels if only for a little while.
Watching the Dandy Warhols from a position ON the stage.
Before I was this sick, I was a crazy concert goer. I went at least once a week. I would go early, get a spot against the stage. If I was late, I would weasel and push my way to front and center. Once the music began I danced and pumped my fists until I could not feel my limbs. I would pour sweat. I never cared, and still don't to this day, how I looked. Yeah, I'm that girl. Music moves me and without it I would be in a much worse place than I am today.
We were at a massive venue for James Taylor. Look how blurry he is way down there!
Now that I am sick, too sick to dance, too sick to even STAND, I have had to find other ways to enjoy concerts. I have found a way to do just that, and this summer I was able to attend some 15 concerts thanks to my boyfriend, my friends and family's help and LOTS and LOTS of pain killers. What I do is this:
First I take a good look at the venue. Most of the music I like is underground so the venues are too small to have seats. This summer we saw some major bands like QUEEN, Ringo Starr and Paul McCartney. Those were in massive venues which are more likely to provide seating. Depending on how much I like the band, I made decisions about purchasing either assigned seating or General Admission. If you are very sick like me, choosing assigned seating is an obvious choice. I have studied all the venues in my area and know them very well. I have seen them online and I have, in my less sick days, seen concerts at pretty much all music venues in the San Francisco Bay Area and San Jose. For the larger venues like where I saw Queen, Ringo Starr and James Taylor the decision was made for me. There was no choice beyond sitting in an arena chair. For those concerts I took advantage of their handicap facilities. The same can be done for sporting events as they offer the same amenities. This year we attended a couple Sharks games at the San Jose Shark Tank. I just made sure we bought seats near the entrances so I did not have to climb stairs. We attended a Giants game in San Francisco where we were able to use a provided wheelchair on the ferry AND at the game so it was GREAT. I also got to use a special elevator just for handicapped people. I had to climb a couple stairs to attend the playoffs of the Warriors in Oakland but the attendants and ushers there were super helpful in getting me into my seat. I was even allowed to move down to a closer seat that was being unused. Well, it was more that they looked the other way when I went closer. I could not get up to my real seat so we sort of sat wherever we were at the point I realized I could go no further. So, for sporting events, I learned that the employees are not only used to helping handicap folks like myself but they are good at it and go beyond the necessary to make it enjoyable and not embarrassing for me. It helps to call ahead too.
We saw Queen and Adam Lambert at the San Jose Shark Tank, the same venue as our beloved hockey games.
Back to music concerts. I found that once that same venue is set up for music, I got a little less help. It may not have been the people who worked there so much as my attitude. I don't particularly like being waited on or helped like I am totally useless and unable to do something as simple as get to my own seat but I am often that helpless. For the concerts the first thing I do is buy a ticket close to stairs or entrances. That is the first step. Now, to get to that seat, the next step (for me) is to take extra medication. In order to stand up and walk long enough to get from the car to my assigned seat, I have to take about 4-6 times the prescribed amount of pain killers. I also take a little less of my healing medications so I am not feeling the effect of the disease being fought which gives me a bit more energy and a bit less pain. If you get a seat near the entrance or stairs you are at least ensuring you have the least amount of walking or scooching past others which can be quite painful and difficult.
One of the best bands in the world, Trust, and I was confusing the poor singer by sitting way far back on the stage. Can you see from this photo that I am actually behind the lead singer?
That feeling of the disease being fought is called a Herxheimer Reaction and is a very real issue with my disease. If you have Lyme Disease or any of it's coinfections you know that treating the disease is more painful than the actual disease. Fun, right? So, a combination of less treatment and more pain killers is the second step in getting to your assigned seat so you can enjoy a concert.
If you are not at a large arena you sometimes have a choice of General Admission which means the floor and/or against the stage, or you have the option to buy balcony or assigned seats. When we saw The Knife, I bought balcony seats because I knew I was too sick to even stand or walk to the floor or stage area. I got seats that were right next to the aisle so if either of us wanted to dance, we could get up and dance in the walkway and then sit back down. I assessed the type of music and decided that because this band put on such a great visual show, I would not miss out by sitting in my seat.
The Knife as seen from waay far away in the balcony.
Some bands I just love so much that I MUST be closer to the music and the band. When we saw Morrissey, The Faint, DEVO and others, I had to be there with the musicians and fans, feeling the music. For these situations, I still do the medicine things but I adjust my location in the theater. I purchase General Admission tickets and arrive as early as possible. This often causes a conflict with how long my medication lasts so for this I have to take extra medicine with me because I am out of bed for a long period of time. I arrive early and stake out a spot against the stage. Not a spot in the center but about 1/3 from either side. I talk to the bouncers and photographers as they arrive to let them know about my condition. They will pretty much always let me sit on the stage or on the railing until the concert begins. Once the music starts, I am usually no longer allowed to be on stage so I position my body flat against the stage from my waist down. Then, I flop the upper half of my body onto the stage and lay there splayed out. This way I am not really standing up at all but rather lying on the stage but because my feet are on the ground I don't get in trouble with the bouncers. From that position I am not only able to be up close to the performers and the speakers but my body can feel the music pulsing from the stage into my bones and head, giving me an extra connection to the music. An huge perk to this method is I get trinkets and gifts to take home like guitar picks, drum sticks and play lists. I also get handshakes and acknowledgement from the musicians so that is a win-win.
I got the play list off the stage when we saw Gary Numan because I was basically already on the stage.
On the occasions where my boyfriend likes the band more than I do, like when we saw the PIXIES or Filter last month, I buy General Admission tickets and then go lay on the stage way to the side. That way we are pretty close to one another yet he gets to dance and be in the front and I get to lay down and be out of the way. There are also some really cool times when it is a band I love so I get the GA tickets, I get there early and then I find out there is no security at all, I get to just climb up on stage and sit there for the duration of the show. I did this for Trust, one of my all time favorite bands and as a bonus, the singer, Robert Alfons, noticed me and acknowledged me multiple times during the show which made me feel quite special. He may have been staring at me and walking over to me because he was confused and perhaps scared but he is so gorgeous I just didn't and don't care. When we saw the Dandy Warhols a couple months ago, I was sitting on the stage and the band assumed I was supposed to be there so they passed me a joint! I can't smoke marijuana, so I passed it along but being passed a fatty by such an iconic and amazing band made my bf's whole year.
Sitting on the stage at Filter got us numerous handshakes from the band and the set list. The bf's head was spinning because he loves Richard Patrick.
So there you have my summer. The only reason I made it out of my house was to go to concerts. I know for many people who suffer from Chronic Illness can't even do that much. But if you are ailing or disabled like me, and there is something out there that means the world to you, there ARE ways to get out there and do it. For me, getting there is arduous and challenging, not to mention painful, and I pay for it in the days following, it is worth it to me to cleanse my spirit with the vibrations of meaningful, stirring music.
This is the angle the bf got. I had to sit almost behind the stage to make it through this PIXIES show.
I will try to post more but I am working on two major projects. I am writing a book and planing my 40th birthday. The latter is coming up on us fast, less than two months from the posting of this blog! eeeep. Super excited. I hope I can stand up and walk around for that. Fingers crossed!!
We were close enough to Morrissey to touch him. I had to sit on the stairs you can see on the bottom right of this photo.
Again??
It is funny how life is cyclical. I made so many changes in my life yet here I am with little change. I picked up my whole life and moved it to the beach. Do you think anything has changed at my HMO? No. I have been re-diagnosed with Fibromyalgia and ordered to take the Chronic Pain Clinic courses all over again...same garbage, just a different setting.
The weather is wonderful these past few days. My social anxiety keeps me from heading to the beach and reading my book like the rest of my being wants to do. The good weather brings me a bit of energy and coherence so I am hoping to use it to catch up on my good intentions of blogging that I had before my health and life went to hell in a hand basket. I thought I would start by revisiting my resolutions. What were they? Reading more books, keeping up my plants, and trying to whiten my teeth.
Well, moving killed several of my plants so I guess I will have to try to replant them. I also tried whitening my teeth but after one application to my upper and lower rows with Crest Whitestrips I was in agonizing nerve pain in my mouth for a week. So that's out for now at least. Finally, I have little excuse not to read. That is where I will pick up then, reading and replacing/watering my plants.
Doing one of my favorite things: Reading a book on a beach.
I am a big fan of the following authors: Lincoln Child & Douglas Preston, James Rollins, J.K. Rowling, Dan Brown. I have books by many other authors like Ted Bell, Daniel Silva and Michael Crichton. Those books I get from my brother after he reads them. I can take or leave them but apparently have have taken them all and now it is a question of whether or not I will read them. I did read a couple books recently and I am in the middle of one now. I would like to talk to you about those now.
Also, I will throw in a couple 'before' photos of my plants so I can keep a record of their progress. As it stands, I am sure it will just be photos of dirt for a bit but fingers crossed it will change as time progresses. I am not sure how well my mostly tropical plants will fare in this foggy, coastal location so my hopes are not too high. Ok...time to talk books....
It is a common question between my brother and myself: What are you reading? I have so many books on my bookshelf I can barely keep up with naming them let alone reading them. Shopping for and buying books is a great deal of fun for me. I buy many and the rest I get from my brother. So far this year I have read the following two books:
JK Rowling's The Casual Vacancy and Vincent Van Gogh's The Letters Of Vincent Van Gogh. I am currently reading a compilation of short stories put together Neil Gaiman called Unnatural Creatures.
First off, The Casual Vacancy. I have to begin by saying that I just adore JK Rowling's writing style. Her descriptions are intelligent and innate. That makes for good reading all by itself but add to that her prodigious imagination and you are talking about a real reading experience that immerses you into a detailed world you feel familiar and comfortable in because you are there. I have read all seven of the Harry Potter books. I just loved all of them. I had seen a couple of the movies by the time I had read the first of the books so I went into it with a biased mind. I assumed it was 'dumbed' down for a child's mind but I could not be more wrong. The content, the words chosen and the grammar are all sharp and can entertain the most sophisticated mind. There are some authors, like Dean Koontz, for example, that make me feel it was written for a partially illiterate person. I like Koontz' stories so I read a book of his every now and again but his simple use of words, his need for redundancy and explanation really make me feel embarrassed to be reading it, how above him I feel. Not to mention how insulted I feel.
When I read the first of the Potter series, Harry Potter and the Philosopher's Stone, passion ignited in me. You know, that feeling you get when you know you have a good book in your hand....and that even better feeling you get when you know there are SIX MORE in the series yet to be read! The content surprised me. She did not dance around the darker subjects. Spoiler Alert: That boy was abused. There are many other heavy, mature, real world topics that JK Rowling introduced in that series, to name just a few, bullying, death, murder, threats and violence. She adds wonderful imagination and creativity, wonderment and (I hate the term but....) whimsy as well. They are balanced books. There is no hint of Are You There, God? It's Me Margaret. I, in no means, am bashing that book, I read it when I was a little girl but what I mean is that the Harry Potter book series should not be used as a pre-teen handbook. But at the same time it could be. I read the series in my late 30's. The magic of JK's writing is that it spoke to me. I could relate to it. At the very same time a 12 year old boy....pretty much the opposite of me in every way... can sit there reading the same words and they are speaking to him.
Why am I going on about Harry Potter when I am supposed to be talking about JK's newest book? Well, I may have gotten carried away because I love those Potter books so much. That, and I need to put down a backstory of my feelings for JK Rowling. See, The Casual Vacancy was released dubbed as the author's first book "for adults". I know we are all supposed to try not to compare this book to the HP series but it is difficult and it would be plain wrong to not mention both books because it is the same author after all. When I read TCV I went in knowing it was not meant to be anything like the HP series and it was for adults. This may have biased me a bit but I don't think anyone can fully detach themselves from such an epic series and from being utterly curious what JK Rowling's definition of a "book for adults" would be. My take: A book for adults just mentions horniness and boobs more. That's it. Other than that, I really have NO CLUE why she even bothers to mention one book is for one age group and another is for someone else. It ruined a bit of my reading experience as I read her awkward, forced adult themes/issues. There were more adult issues in HP if you ask me. I don't need to hear if someone gave someone else a boner to feel adult.
The main concept of the book is a third person view, actually several third person views, of a death in a small village and the reactions of each walk of life influenced by it. The book was well written which kept me reading steadily. I read the book in a month's time. It was not hard to put down but I did look forward to picking it back up before bed every night. The characters are well developed, which is saying a lot if you consider how many characters are highlighted in the book. The story is an age old one, politics, social class separation, greed, pride, jealousy, lust... This creates a sort of timeless feel. A timeless feel can be good and it can be bad though. It is old, played, predictable all of which this book is, but it can also be classic, familiar and relatable which this book is as well. Sure, every single person in this little town is a miserable, horrible person, but that is no reason to not like a book. I am a JD Salinger fan, after all. I am used to wishing I could pick the characters up out of the book with my fingers and wash them in my sink then shake them into making the right decisions before sticking them back in so I can continue reading about Holden or Seymore. It is similar with the folks in The Casual Vacancy.
In the end I would not recommend this book to my brother. I would recommend it to Harry Potter adult fans, not the young ones. I would also recommend it to anyone who is just curious because that is enough to get through the book. It does read well, it reads intelligent...if you ignore the hard-on and tit mentions...and if you are looking for something to kill some time, it will not let you down. It is a small adventure that takes you not very far from home. Were I to give ratings I would say three out of five....things.
The next book I read this year is written by Vincent Van Gogh. It is translated by someone else but the bulk of the book is completely comprised of the letters that Vincent famously wrote to his younger brother, Theo. The reading is a bit heavy, the wording is a little rough but that does not stop this book from being anything less than fascinating. I am a huge Van Gogh fan and Impressionist art fan. look at a painting. I try to put the brush in my hand and my mind into their head.
A favorite Van Gogh of mine.
When I went to the Musee D'Orsay in Paris for the first time, I broke down and cried in the Van Gogh room, and again in the Monet room. I find the work of those artists and their colleagues incredibly moving, intelligent, fascinating and pleasing....more but I just don't have the words to describe the feelings I get from spending time with those paintings. For me, the painters are to their paintings as musicians are to their music. A week ago I went to see Morrissey live. We saw him live less than a year ago. This time we were against the stage. It was the closest I have ever been to him...the man, the legend, the hero, the genius, the sexy, sexy, sexy beast...And I cried. I cried like a teenage girl seeing The Beatles for the first time. That is what I did when I "saw" Van Gogh at the D'Orsay. Sure, I have seen a few of his paintings before. I have a membership to two museums in San Francisco and I frequent them often. I frequent the Monets, the Van Goghs, the Cezannes. What made me cry this time is seeing so many in one place. I don't ever just
What could get a person closer to the artist than reading his personal diary? That is what The Letters of Vincent Van Gogh does. That is why I like this book. There is so much I learned about what this man, this beautiful, gifted, amazing artist, went through. What influenced him, how he felt about himself, his art, God, his family, women, woman, where he lived, his influences and friends. He is a descriptive writer, not that surprising, who wrote to his brother with complete honesty. He was always trying to be a better person.
An example of one of the pages. They included photos of the actual letters and some of the sketches he enclosed with his letters to Theo. I also earmarked dozens of pages to remind myself to look up the actual art he was referencing in the letters.
Reading his book after knowing his paintings so well as I do makes me want to go right back and see all his artwork in this new light. Even if you are not familiar with most of his work, reading this book makes you want to search out and see as much as you can. What is also fascinating is reading the words from the mind of a madman. Van Gogh is famously a manic depressive who suffered from bi-polar disease. Reading about the world through his eyes is captivating as well as educational. I recommend this book to anyone who is interested in Van Gogh, Impressionist Art, Paintings, Museums, Struggling Artists, social and mental illnesses and old country Europe. I know I plan on visiting many of the places he lived or visited because of this book. I give it four out of five....things.
Finally, I want to mention the book I am currently reading, put together by Neil Gaiman, Unnatural Creatures is a fun compilation of short stories that range in publication dates of 1885 to 2013.
The part I like most about this book is that there are 17 different stories so I get to read a whole new story every night before bed, in it's entirety. Some nights I am reading a few pages and other nights I am reading several. It is satisfying to begin and complete a story every evening. That way I have a little time before I fall asleep to contemplate it. Part of the proceeds of purchasing this book go to support creative thinking and writing in youths. It is the creativeness that comes inherent with a book featuring unnatural creatures to begin with. I thrive off of the imagination of other authors. That is what reading is all about for me, taking images and words given to me by the author and using my own imagination and mind to take it just that much further. The reading is pretty simple in the book. I imagine it is written for a younger audience.
Example of one of the stories.
Keeping that in mind, I give this book four out of five....things. I have 8 more stories to go though. If I continue reading a story a night, I should be finished with this book by next weekend. I then get the fun of choosing a new book altogether. Weee!
I promised a couple photos of my plants so here they are, in all their patheticness....
I just planted some more Morning Glories in this pot. You can see the miserable stick left over from the move is not doing well.
I made a ridiculous attempt to hang a tomato plant. Not enough soil for this guy to survive I am sure.
Actually, BOTH my Hibiscus plants are very happy so there are some good things out on my patio.
Another happy plant is my Nasturtium. I learned recently that it prefers to be in half shade so I moved it to this corner of my deck. It is producing nice colors.
Remember me? I began the year with such hope and so many great new year's resolutions and then my life got turned on it's ear...again. Ever since I was diagnosed with Lyme Disease I have been in what feels like a tornado. I'm still sick, VERY sick, but now I have new problems, not solved problems. I have been doing loads of research on the good old internet to find out if I am alone in this or if there are others like me. Turns out there ARE others like me...hundreds of thousands of people like me. So I want to share my story to have it added to all the others. I hope newly diagnosed or even self diagnosed people out there can maybe read this and find a sliver of comfort knowing this: It isn't you, it's them. But....who is 'them'?
I grew up playing outside. Most people probably did. I lived in the suburbs and had access to some of the best hiking and camping the USA has to offer. I lived in the shadow of Mt. Tamalpias, where mountain biking was invented. I have an old newspaper clip celebrating Mother's Day. On the cover is me, as a baby with my mother and toddler brother. We are sitting in the sun in a tall grass field on Mt. Tam. After my mom and dad married when I was about age 7 we were camping several times a year. My love of the outdoors did not stop when I went away to college. In fact, I would say it increased. I got a degree and later, a Masters degree in Geology. I was camping and hiking for a living. I am pushing 40 now. I still love to hike and camp although now it is not so often because I am too sick and tired to move that much. I don't blame the outdoors for my being sick. The outdoors are still great in my book. Just the other day....no, actually it was about four years ago, but to me it was the other day, I went on a picnic/hike with my boyfriend. We had a blanket spread out on the ground. We ate all kinds of wonderful salady things, had some wine and laid down to stare at the clouds. I looked down as I stood up to leave and saw four or five ticks had decided to join us on the blanket. I shook them off.
Mt. Tamalpias, Marin
That was not the first time I was around ticks though. I was bitten by one when I was really young. I want to say 8 years old. Mom had to call people to figure out how to get the tick off because it was really lodged into my skin. In my pre-teens I spent a lot of time up at the family cabin where I would sometimes sit and watch in disgust as my aunt laboriously pulled tick after tick off of her furry dog. In my 20's I was on a week long geologic road trip through Nevada when I ripped what I thought was a knot of unwashed hair out of the back of my head. I looked down at my fingers to find I had just dislodged a tick from my scalp. The car full of men I was in came to a screaming, dusty stop on a dirt road in the middle of nowhere-desert so everyone could get out and check their bodies for the same. I was the only lucky tick transporter. The thing is, at that point, I had not been outside of the car for 8 hours. That means that tick had a full day to bore his little way into my skin. I still don't know if I ever really got him all out. I hear they can detach their heads.
All this contact with a known vector for Lyme Disease and I never paid any bother to the issue or illness. I have always trusted my doctors. I have never had a reason to distrust them. At least, I never knew that I could have a reason.
At age 10 I was having such terrible pain in my knees I finally had to go to the hospital for it. I was dismissed immediately because I am a tall girl so it was presumed to be growing pains. I am fortunate enough to have a mother who was truly in tune with her daughter because she knew in her heart that the pain I was displaying was not 'normal' pain that tall little girls go through. It took a couple years of fighting with doctors...oddly enough this fighting with doctors theme would continue my entire life on through this very day...The doctors agreed, reluctantly, to run a Rheumatoid Arthritis test. I tested positive for the RA serum. I had Juvenile Rheumatoid Arthritis. I began taking pain medications at the age of ten. At the age of 12 I was taking medications to treat Arthritis.
I'm the tall one with the knocky knees. This is one of the few times I was able to do this much walking. And yes, that WAS our troop number.
I missed out on a lot having JRA. Sometimes I used it in my favor, like when I didn't want to do P.E. in the mornings, I would say that the cold air exacerbated the pain. The coach would let me sleep on the port-a-pits meant for high jumpers to land on for the period. Most of the time, heck, even the times I was using it as an excuse, it was actually painful and excluded me from normal childhood experiences. I never learned how to be on a team. I never learned how to play sports. My nickname in High School was "Wimpy".
By High School I was taking 800mg prescription Motrin. I had tried Asprin, Naprosyn, Disalcid, Ecotrin, and other things whose endings rhymed with "sin". Motrin worked best for my pain but I had to take it constantly. This burned a hole into the lining of my young, teenage stomach. I had ulcers by the age of 16. I missed out on eating burgers or drinking cokes with friends. I couldn't order coffee at the cafe I practically lived at for my whole High School social life. I had to treat the ulcers for two years. By the time I was back on the Motrin I was 17 years old and in college.
A normal day's worth of meds for a teenager, right?
Once I was in college I was in total control of my medication. In order to keep the pain at bay I was taking 800mg Motrin every four hours when the pain was at it's worst. This dosage would last for days at a time. When I would run out, my knees would swell up and I would be left unable to walk. It was the worst kind of party foul. I had understanding friends who would help walk me home from a party I didn't even get to have a drink at. If my prescription ran out, I would buy the 200mg pills and just take four of them a pop.
Pain was not my only symptom. I suffered from terrible fevers. When I was 10 years old I had a fever of 107. I was on vacation in another country. No one knew what to do. The mercury on the thermometer was maxed out at the end of the stick. I thought I could hear my brain frying. But that was not uncommon for me. Whenever I get a fever, I get a high one.
Not too uncommon for me growing up.
Along with fevers I have always suffered from insomnia. I had to go to therapist after therapist all trying to find out why poor little Stephie was screaming in her sleep all night and sleeping in class all day. Must be depression. Must be drugs. Must be.
Along with RA I had other "old person" ailments. I got Shingles when I was in Middle School. I got it again in college. I recall doctors being quite surprised I had contracted Shingles, an inflammation of the nerve endings, at such a young age. It was unheard of to have it twice before age 20. I like to break rules though.
Fast forward to 2008. I am 33 years old. I am the manager of a laboratory in a winery. I have a great boyfriend. I have a fantastic job that I love and am real good at. I'm making great money. I love where I live. I am a happy, happy girl. But I start getting tired. Really, really tired. I start to decline managerial meetings I am required to attend because I no longer am able to stay awake in them. I ended up in the emergency room. I just couldn't lift my own head anymore. The doctors didn't know what to do. They told me I could no longer drive for fear I might fall asleep on my way to work and sent me home with some Trazodone. The Trazodone did help. I was able to get back to work after a week or so. But things did not get better. In fact, they got worse...a lot worse.
I was still not sleeping at night and not staying awake during the day. People thought it was just stress. I have suffered from anxiety my whole life. The earliest I can recall having bad anxiety was when I was 10 years old. I was in France with my family. We were waiting for a restaurant to open. We had lunch reservations and we had arrived early. The restaurant is a super fancy, three Michelin Star, famous establishment along the L'Ille river. I started freaking out. I was overwhelmed with feelings that I needed to get out of there right away. It was a sick feeling in my stomach. I could not run away. I could see the staff walking back and forth getting ready for the lunch reservations. I knew they were laughing at me. I could see them laughing at me. I could hear them. They were laughing because we were early. What was that stupid American girl doing in that stupid striped beige dress. She is a fool standing out there waiting for lunch so early, doesn't she know when to show up for lunch reservations? I wanted to will myself out of there. It became a family joke after that. I would not want to go somewhere and we would joke "they are laughing at me". I didn't realize that is a condition. It is called Social Anxiety Disorder. I had it then and I have it now. I can't do a lot of things because of it: shopping on my own, driving to new places, ordering food in certain situations, and taking public transportation, to name a few.
Source: http://p-h-o-t-o-g-r-a-p-h-i-a-s.tumblr.com/post/30928337853
So, yes, I do suffer from stress but this problem with sleeping/staying awake was new and the anxiety was nothing new so we still could not put our finger on the source. It was in 2010 that I started to feel more pain than usual. I was finding myself in the emergency room again and again with what I thought was Meningitis. The pain in my neck was searing and unrelenting. Between bouts of pain in my shoulders and neck I noticed my Arthritis get worse. My knees were hurting, my toes, my hands, my knuckles, all ached a low, dull ache. I started seeing a Rheumatologist.
The Rheumatologist began me on some Plaquenil. The pain did not lessen. It didn't take long to add the Sulfasalizine to the regiment of pills. I was not getting better. I had planned on going to Europe for vacation in 2010 but I was in too much pain. I was concerned the pain would ruin my trip. The doctor gave me Prednisone and Vicodin. That got me through the trip quite well.
Even though I made it through my European vacation, you can still see there is pain in my eyes in a photo like this one. (ignore my mom's finger in the shot ha)
All the medications were starting to work but I started throwing up a lot. The Rheumatologist decided I was on too many medications and replaced the two Arthritis meds with Methotrexate. I then had to begin monitoring my liver weekly. My job centered on alcohol. I MADE wine for a living. There was no way around consuming alcohol for my job. The medications I was on can combine with alcohol to do serious damage to internal organs, namely the liver. Once again, I was visiting the hospital on an at least once a week basis.
The Prednisone helped but it is famous for changing the user of the drug's body. It can give you a hunchback. I did not get that, I DID get the moon face. Prednisone made me gain 40 pounds. I ate healthy, VERY healthy, but it did not matter. The drug adds water to your face and your stomach. I no longer recognized the person I saw in the mirror. I didn't like what I saw so I stopped looking. My pain was still there so to try to get myself into work every day I took more Vicodin.
By 2012 I was taking, what was in my opinion, way too much Vicodin. I felt like my symptoms were being treated with all these pills but no one was working towards a diagnosis. Towards the end of 2012 I was back in the emergency room. I went in without taking any pain medications so I could really explain how I was feeling. I was admitted to the hospital.
My week spent in the hospital was fruitless
In the hospital, for the first time in years I was finally without pain. It took 2 ml Dilaudid to finally "get on top of the pain". The doctors said I should have been passed out from the drugs but I was taking a shower. Taking a shower, for me, is a huge ordeal. I call the shower the Torture Chamber. Think about it. If you are in all over body pain, which is what had by that time been what was happening to me, standing up for several minutes at a time with your arms over your head or scraping a razor over your tender skin is a nightmare to say the least. So, I took a shower. That was the last time I recall having a pain-free shower. I should have taken ten showers. Oh well.
The view I had for over a week. I didn't mind because I was relatively pain-free for that whole time.
I spent over a week in the hospital. They ran every test under the sun. The Neurologist came in and spent hours with me. He could not find anything wrong with me neurologically. Therapists came in, I had EKG's MRI's, consultations and more. I was pretty comfortable during that week. It took 1mL Dilaudid every 4 hours to keep me pain free. But I WAS pain free. If only for a little while. My Rheumatologist came in, looked at my knuckles with his bare eyes and told me my Arthritis is fine, he has cured it and any pain I have now is not related to that. I went off the Methotrexate.
I left the hospital with Prednisone, Methadone, Dilauded and Norco pills. They told me I have Peripheral Neuropathy and gave me Gabapentin. They told me have have Fibromyalgia and gave me Cymbalta. They told me I have Chronic Pain and they signed me up with the Chronic Pain Program, Level Three. I was sent home.
Me and my walker had some adventures together.
The medicine they put me on took away my ability to drive. They did much worse than that. They took away my ability to work, to feed myself, to walk....everything. I would never go back to work after that stay in the hospital.
Ah the Chronic Pain Program. It was 11 weeks long, 4 hours a day and 2 hours away. Being unable to drive, I had to sign up with a disabled persons transportation service. "Wait", you might be saying, "I thought you said you have issues with public transportation because of your anxiety". Yes, you are right. How did I get around that? I had to go with someone. So my mom came with me. She had to donate her time to come around in the morning, I had to pay for two people to go up on the bus, she sat there in the waiting room for 4 hours EVERY day just so I could go to this class.
The main way I got around for several months...wheelchair.
I tried to blog the class on this blog but as I got further and further into the program I found less and less help from them. We did little exercises, we walked, we meditated, we talked and supported. The last day of the class we watched a video of us on the first day and the last day, doing reaches and movements that were meant to show our progress. The whole class wept when they saw that mine was the ONLY one that showed NO CHANGE. The exercises I would do in tears because the pain was so bad. Moving is very, very painful for me. It was not helping me at all. The doctors insisted I exercise because that is how you cure Fibromyalgia. It was not and did not help me. It may have made things worse.
Meanwhile, I had to go off some of the drugs they put me on. I could not live a life of using a walker to get around, having my mom feed me, my boyfriend having to clean the house and walk the dog around me as I lay on the couch day in and day out in utter agony. The pain of going off the drugs they put me on was worse than anything I could have imagined. I tried to use the therapists and doctors offered to me from the Pain Clinic but even they admitted I "fell through the cracks". I had to threaten suicide just so I could see a doctor. By then end of the class I was on 12 Norco a day. I was not better, I was WORSE.
In attempts to make a change or get a new diagnosis, I changed doctors. I did this maybe 6 times. I found a doctor I liked somewhat but then he got in a terrible accident and became unavailable. At that time I began to really flail. I had no Primary Care Physician and a LOT of needs. I spent at least every 10 days fighting, screaming, threatening and crying at the doctor's offices just to get my prescriptions filled....the prescriptions THEY gave me, THEY hooked my body on.
I finally lost my job. With my job I lost my insurance. Now what? Someone I was friends with on Facebook, the mother of the boy I was in love with in High School, actually, recommended I see a Naturopath. I didn't think much about it because I had already tried so many things including Acupuncture, Homeopathy, Massage, Juicing, Mindfulness, Guided Imagery...and so, so much more. But when I lost my insurance I had nothing, and everything, to lose. I went to see the Natropath. He is what is called a "Lyme Literate" doctor. He listened to my massive list of ailments that included everything I have mentioned so far and among many, many other things, cold sweats, heart palpitations, vertigo, confusion, and horrible, horrible tinnitus. He suspected Lyme and sent my blood to the only Lyme testing establishment in the Western US.
It was VERY costly to run the tests and you will recall I have no insurance. The results took a month to come back. I tested positive for the Western Blot Test. This was the first time in thirty years of my life that I had a diagnosis that was testable, besides the Arthritis when I was 10. It was a relief, in a way, because it is treatable but it was not the great ending to a terrible journey I was hoping for.
I found out that most doctors in the main HMO of California do not accept the testing at that lab and do not even believe there is such thing as Chronic Lyme Disease. I began a regiment of antibiotics that have been costing my just under $2000 every month. I was able to get insurance again through my boyfriend's work. I took my test results to the HMO only to be laughed at, ridiculed, belittled and denied treatment.
It is now 2014. I have insurance but I am still having to spend money out of my pocket for the antibiotic treatment. I also have to lie about it to the doctors whom I am insured with. I am still unable to work. I am still in incredible pain. I had to move away from my family and friends to be closer to the boyfriend's work in order to keep the insurance. I still needed the insurance because I find myself in the emergency room frequently still. Most recently I was in the emergency room with a kidney stone. While there they told me I have Hepatitis. They said that and then released me. I asked them before I left why they are telling me I have Hepatitis. They said that they could not find a kidney stone and some preliminary tests showed I had some elevated liver enzyme levels. That tells me that they could not figure out why I had that terrible pain (which I still think was a kidney stone that I passed the moment I arrived at the hospital as I have had them before and remember what that feels like) and they could not figure out why but they wanted me out of there so they told me Hepatitis and sent me on my way. Well, I DON'T have Hepatitis. I DIDN'T have Hepatitis. They are just blindly throwing these diagnoses at me with NO regard to my well being. It is too hard for a healthy person to have to fight for healthcare like this but for a very sick person, this is almost too much to take.
Since that visit, I met with a new doctor closer to where I now live. She has decided there is NO WAY I have Lyme and I must have Fibromyalgia. She prescribed me Norco and Cymbalta and has sent me to the local Chronic Pain Clinic. It is almost comical. Really, it is. If it wasn't so terrible for me to live every single minute of every single day of my life, I would be laughing.
But I am not laughing. No one I know is laughing, except maybe my doctors. Or perhaps the CDC. It is the CDC that made the silly guidelines that "ties the hands" of my HMO to a certain testing sequence, a sequence that RARELY, if EVER, shows a positive result on the first screening test. See, the way the CDC has the tests go, doctors in the US must first run a screening test which happens to be the test that when Lyme was discovered in the 1970's showed the most true postitives and least false negatives and positives. It just happens to be that the strain of Lyme that fit this bill is a GERMAN strain found in....you guessed it, GERMANY. So how the hell am I supposed to test positive for that? And after someone tests positive for that test, only THEN will they run the Western Blot Test, the test I show positive on.
I could go on explaining how the people in the CDC who created the testing guidelines all had a strong financial and personal interest in Lyme not being well diagnosed or contained. I could mention how Lyme Disease is named after the town of Lyme in Connecticut which is 9 miles in a B-line from Plum Island where they had scientists studying bio-warfare tests on ticks, of all animals. I won't though. I won't go into how there could be all kinds of reasons the government would like to sweep Lyme under the carpet, keep it quietly infecting the public, secretly studying us patients. I won't go into that because we are getting into conspiracy theories and I don't want to do that. What I want is to be properly tested, diagnosed, treated, cared for and CURED for a condition that I have had for 30 years. I just want to be better. I would like to be acknowledged as being sick. I have been told it is "all in my head" so many times, it could break the strongest of spirits.
So, that is where I am right now. I am seeing my new Rheumatologist tomorrow and the Chronic Pain Clinic folks next week. I am still on antibiotics and will continue those for the next year or so until I am cured.
If you would like to help contribute to my final treatment so I can hopefully live a normal life for the first time in my life please go to this link: http://www.gofundme.com/xxfyz45w
