And I thought that
Adderall was going to be a problem in that people would misconstrue why I was taking this particular stimulant and they would think I was using it as a diet drug. But oh, it is so not working like that.
Yes, it is an Amphetamine. And yes, Amphetamines are known for making people not want to eat. I do admit that since starting them, the crazy binges that I was going on seem to have stopped although I also state for the record that I still want sweets and even, covertly, bought 8 (eight) malted milk balls from Henry's Market out of their bulk bin last Saturday night and secretly ate them before joining my family and loved ones at Warner Center Movies In the Park. I also bought a package of Bavarian Pretzels which I brought to the park and shared, and I also shared in the popcorn that Adele - aka goodsis2 - brought for the group. The desire to eat has not left me.
I don't know why this is. On the first day of taking them, I didn't want to eat much, but that sensation was short lived. Now I feel like I did before this brain issue started... like I have a choice in the matter of foods, but I hold the key to making the decision what I am going to eat. I can and would eat junk if I thought there would not be a consequence.
Additionally, I get hungry while taking the pills. Really hungry. The sad fact is that I take the first one very early in the morning. That chemical reaction allows me to get out of bed and function after a fashion in the morning. But I have found that if I eat anything after consuming the first pill, it renders it ineffective and I wind back up in the semi-catatonic state for the rest of the day that I was living in before starting the series. That's just not acceptable, so I choose not to eat breakfast. And I suffer.
Around mid morning, I usually break down and take a small snack. I've found that an ounce or two of pretzels don't seem to interfere with the medication, so that has become my standard. But I do pause for thought as I eat them. This is not the healthy option that Richard taught me to incorporate into my lifestyle. Rather, it's simply empty carbohydrates. The trouble is that real food inhibits the action of the meds, I'm ravenous at this point and feeling it in my body as well as my psyche, and this particular food in small quantity gets me through. So I plan to continue eating them between 10:30 and 11 am for the time being, but I'm not happy about it. In fact, I'm out of them this morning and will need to run to Henry's Market to buy them out of their bulk barrel (the have salt less Bavarian ones there), pointedly ignoring the Malted Milk Ball dispenser all the while.
I take my second pill at noon. I watch the clock closely as the first pill, although it gets me moving, does not act in a strong enough manner to bring my brain into focus. I can get things like e-mail done, and get myself dressed, and minimally clean house, but I am not myself. It isn't until about an hour after the 2nd pill that I am as fully functional as I can expect. Somewhere between 65 and 75% of my normal self.
At this point, I'm starving. I dare not eat before the second pill is fully in force, and that's about 60 to 90 minutes after taking it. Then I eat a lunch - so far very healthy - that ranges in the 400 to 600 calorie range. It's enough to fill my calorie needs for the afternoon and keep my body functioning normally. Then, I am ready to work on jewelry or other creative pastimes, make serious dents in the organization and cleanliness of my condo, and do other tasks essential for daily living.
I do profess that again, I am relieved of the binging urge, for it was the afternoon that I was at my worst before starting this med. The doctors are theorizing that my body was hitting such a level of fatigue that it was triggering me to eat anything to give it short bursts of rapid energy. The issue, of course, that the bursts were very short lived and I'd have to dip into the simple carb pool again and again, and suffer the rapid weight gain that such action would promote.
The pills drop off very rapidly in the evening. Come around 9 pm, I'm ravenous. I've been trying to leave leftovers from lunch in my refrigerator so that there is something easy to grab, and then I'm trying to get to bed early. There seems to be a residual effect to the stimulants in that although I still do not sleep enough hours, the qualtiy of my sleep is better. I'm not waking up several times in the night, and having to eat every one of them.
Why doesn't this pill work like it's reputation as an appetite suppressant for me? I'm not sure, but I have a theory. Most people who take it as a diet pill are functioning at normal capacity. That means that the chemicals can put more emphasis into side effects and prohibit eating. For me, the pills are expending most of their energy just in opening up the pathway to my brain. There isn't much left for other ulterior actions.
Any way I look at it, I'm still worried that I am setting a bad example by taking these pills, but I'm going to have to live with that. They are making my life bearable for the moment. Until we know what is really wrong with me, I will use anything and everything available to come to center ground.
But the guilt about getting a free ride to weight loss? I think I'm over it. For I can state without a doubt that this is no free ride for me. I'm working the program, and working it hard.
Tuesday, July 28, 2009
Monday, July 27, 2009
Outside of the Box
Staying within your box is safe but predictable. Going outside of the box is scary but where the opportunity lies. I've done both, and both have their attributes and both have their pitfalls.
But before a few days ago, it never occurred to me to make a box of my own design.
This box is a new development for me. I did not take a class; I did not see anything like it. It came straight out of my head.
It began with a "Zales" Gift Box that I decided was high quality enough to be recycled. I cut a piece of gold foil leather to fit the lid and, using the techniques I've developed while making my leather cuffs, bead embroidered it. I also tried something new. Removing the shanks from buttons that I really loved and gluing them directly into the design.
Before adhering the leather to the top of the box, I lined it in silk which I hand painted myself many years ago in response to a commission order that fell through just as I was about to deliver the goods. Although upset that the silk was not sold, I put it into my stash, always knowing that someday, somehow, I would find a use for it.
I learned about cold fabric fusion during this project. "The sticky stuff," as Eric & I grew to refer to it as it adhered to everything it touched including my tools and myself, turned out to be a wonderful item. Where I used it to adhere the fabric to the box, the fit is tight and smooth. The lining in the bottom of the box - the lining on which I learned to use the cold fusion - is much nicer than the lining in the top of the box.
I look forward to using cold fusion again in future projects.
I'm also a little bit pleased about the pictures in this post. Notice that I have, for the first time, used a little bit of background staging for added interest. I'm not going to tell you what it is, or where it came from. It just makes me happy to have taken my pictures to another level. Of course that means that I now have set my own bar to a place that will require more work in an ongoing basis. Sigh.
This box is committed and not available. I am thinking about the implications of adding something like this into my inventory. My intuition is telling me that it is a good idea although the first one, at least, was quite labor intensive. But it may be that, as with all things, practice will make me both faster and better at turning them out, and they might be something that somebody will treasure.
As it is, I am very happy with the outcome. Inside the box or out, I like what I have produced.
But before a few days ago, it never occurred to me to make a box of my own design.
This box is a new development for me. I did not take a class; I did not see anything like it. It came straight out of my head.
It began with a "Zales" Gift Box that I decided was high quality enough to be recycled. I cut a piece of gold foil leather to fit the lid and, using the techniques I've developed while making my leather cuffs, bead embroidered it. I also tried something new. Removing the shanks from buttons that I really loved and gluing them directly into the design.
Before adhering the leather to the top of the box, I lined it in silk which I hand painted myself many years ago in response to a commission order that fell through just as I was about to deliver the goods. Although upset that the silk was not sold, I put it into my stash, always knowing that someday, somehow, I would find a use for it.
I learned about cold fabric fusion during this project. "The sticky stuff," as Eric & I grew to refer to it as it adhered to everything it touched including my tools and myself, turned out to be a wonderful item. Where I used it to adhere the fabric to the box, the fit is tight and smooth. The lining in the bottom of the box - the lining on which I learned to use the cold fusion - is much nicer than the lining in the top of the box.I look forward to using cold fusion again in future projects.
I'm also a little bit pleased about the pictures in this post. Notice that I have, for the first time, used a little bit of background staging for added interest. I'm not going to tell you what it is, or where it came from. It just makes me happy to have taken my pictures to another level. Of course that means that I now have set my own bar to a place that will require more work in an ongoing basis. Sigh.This box is committed and not available. I am thinking about the implications of adding something like this into my inventory. My intuition is telling me that it is a good idea although the first one, at least, was quite labor intensive. But it may be that, as with all things, practice will make me both faster and better at turning them out, and they might be something that somebody will treasure.
As it is, I am very happy with the outcome. Inside the box or out, I like what I have produced.
Sunday, July 26, 2009
101 Simple Summer Salads
For those of you who don't read
Crazy Aunt Purl's Blog, she printed a link to a NY Times article featuring 101 Ideas for Summer Salads. They look amazing.
Complete with a video on the basics of making your own homemade salad dressings.
Bon Appetit! And Thank you Crazy Aunt Purl!!!!!
Crazy Aunt Purl's Blog, she printed a link to a NY Times article featuring 101 Ideas for Summer Salads. They look amazing.
Complete with a video on the basics of making your own homemade salad dressings.
Bon Appetit! And Thank you Crazy Aunt Purl!!!!!
Tuesday, July 21, 2009
Prolific Production
Even as my brain has been misfiring, I've been productive as far as making jewelry. That's been part of the quandary. Convincing everyone that I had lost focus when I can still produce. But making jewelry to me is like breathing. It is what I am.
Here is part of what I have made in the past few weeks:
This is a wire-wrap pendant of gold fill wire, adorned with Swarovski Crystals. The porcelain is actually a rare Satsuma Button from Japan. I bought a number of these buttons at a garage sale many years ago because they were pretty. I had no idea that they were rare and valuable and retailed for around $65 each.
This is a gold fill wire wrapped button, about 2" in diameter. This button is antique, manufactured around 1880 in France, and is even signed on the back! I learned at the Button Store where I bought it not to cut the shank off of the button when making jewelry out of it. It decreases the value of the piece.
This is my very first sterling silver wire-wrap pendant made in class of Abalone with various semi-precious stones and glass beads. Although I really like the pendant, I'm not sure I'm that crazy about the chain with it, and may change it out for something a little lighter.
This is sterling silver wire-wrapped striped agate with semi precious stones on both the pendant and wrapped into the sterling chain. Eric says it's his favorite piece made by me so far.
Faces. Wire wrapped using both sterling silver and gold fill with semi-precious stone adornments. The faces are polymer clay made by a famous artist who's name escapes me right now, but I will update this blog with credit to her when I remember it.
Leather Cuff with a Fused Glass Bead Bezel Cabochon. All of my cuffs are fully lined with lambskin.
Another Bead Embroidery Leather Cuff with extraordinary cut seed beads and European Glass Buttons used as accents.
This cuff features coin pearls and amethyst, and you are able to see the lining. I always use dark leather to line my cuffs because it does not show dirt and oils. Additionally, I have learned to use the smooth side of the leather instead of the suede for the same reason.
I particularly like this piece. It's very feminine, yet avaunt guard.
Deco Modern.
This is an unusual turn for me to take in jewelry. The accent bead is porcelain. The chain woven in a spiral stitch and made of fresh water pearls, Delica beads, and gold lined seed beads.
A line-up of some of my leather cuffs. You've seen most of these already, but I just liked how this picture came out. My newest camera - only a week old - takes some pretty sharp pictures.
Bohemian Cuff.
Copper Foil Leather.
Eric was very surprised to see these sterling silver earrings, as they are a bit more traditional work than I usually do. But I kind of like them as the colors of the stones I chose are different.
Semi Precious Stones, Bali Silver Beads, Swarovski Crystals, and Sterling Wire (wrap) along with my own twisted sterling silver ear hooks make these long earrings a dramatic departure from what I have worked in the past.
I am working out prices on all of these pieces now. If you are interested in any of them, please contact me and we can discuss the particulars.
And finally, a view of my 'new and improved' and definitely cleaned up patio garden. From the chaotic look I love, to clean and neat and spacious. I think I like this look even better. It's certainly more functional. And you should know that every potted plant, large and small, is an herb which I am using daily in my cooking.
No and apology. Sorry. Especially to to the Fabbies. You're still going to have to wait for a picture of my not-so-new-anymore hair. I still haven't taken a good picture of it.
Here is part of what I have made in the past few weeks:
This is a wire-wrap pendant of gold fill wire, adorned with Swarovski Crystals. The porcelain is actually a rare Satsuma Button from Japan. I bought a number of these buttons at a garage sale many years ago because they were pretty. I had no idea that they were rare and valuable and retailed for around $65 each.
This is a gold fill wire wrapped button, about 2" in diameter. This button is antique, manufactured around 1880 in France, and is even signed on the back! I learned at the Button Store where I bought it not to cut the shank off of the button when making jewelry out of it. It decreases the value of the piece.
This is my very first sterling silver wire-wrap pendant made in class of Abalone with various semi-precious stones and glass beads. Although I really like the pendant, I'm not sure I'm that crazy about the chain with it, and may change it out for something a little lighter.
This is sterling silver wire-wrapped striped agate with semi precious stones on both the pendant and wrapped into the sterling chain. Eric says it's his favorite piece made by me so far.
Faces. Wire wrapped using both sterling silver and gold fill with semi-precious stone adornments. The faces are polymer clay made by a famous artist who's name escapes me right now, but I will update this blog with credit to her when I remember it.
Leather Cuff with a Fused Glass Bead Bezel Cabochon. All of my cuffs are fully lined with lambskin.
Another Bead Embroidery Leather Cuff with extraordinary cut seed beads and European Glass Buttons used as accents. 
This cuff features coin pearls and amethyst, and you are able to see the lining. I always use dark leather to line my cuffs because it does not show dirt and oils. Additionally, I have learned to use the smooth side of the leather instead of the suede for the same reason.
I particularly like this piece. It's very feminine, yet avaunt guard.
Deco Modern. 
This is an unusual turn for me to take in jewelry. The accent bead is porcelain. The chain woven in a spiral stitch and made of fresh water pearls, Delica beads, and gold lined seed beads.
A line-up of some of my leather cuffs. You've seen most of these already, but I just liked how this picture came out. My newest camera - only a week old - takes some pretty sharp pictures.
Bohemian Cuff.
Copper Foil Leather.
Eric was very surprised to see these sterling silver earrings, as they are a bit more traditional work than I usually do. But I kind of like them as the colors of the stones I chose are different.
Semi Precious Stones, Bali Silver Beads, Swarovski Crystals, and Sterling Wire (wrap) along with my own twisted sterling silver ear hooks make these long earrings a dramatic departure from what I have worked in the past.
I am working out prices on all of these pieces now. If you are interested in any of them, please contact me and we can discuss the particulars.
And finally, a view of my 'new and improved' and definitely cleaned up patio garden. From the chaotic look I love, to clean and neat and spacious. I think I like this look even better. It's certainly more functional. And you should know that every potted plant, large and small, is an herb which I am using daily in my cooking.
No and apology. Sorry. Especially to to the Fabbies. You're still going to have to wait for a picture of my not-so-new-anymore hair. I still haven't taken a good picture of it.
Sunday, July 19, 2009
The Wrong Impression?
Most of this year has been a roller coaster for me for where weight maintenance is concerned. At the end of last year, I was finally diagnosed with a couple of rare bacterial infections that had eluded the doctor's queries for months and months. I had mostly given up exercise due to the illness, but was very careful about what I ate. Over six months time, eating mostly frozen meals (I was too weak to cook), I was only up a couple of pounds.
I came back to Slimmons early this year, very concerned about my appearance and what it said about me. In fact, I saw a larger me in the mirror, despite my peer's insistence that I hadn't gained any weight. The couple of pounds up were located directly in my waist - nowhere else - and I could see it and feel it in my clothing. But I diligently went about increasing my exercise and watching my food, and a little bit came off.
Then the Ambien Troubles came on. Something changed in me, and I was apparently sleep walking and sleep eating on Ambien. I kept this issue a secret for quite a number of months. I was unaware that this was not unusual on that particular medication and was afraid of being judged for being nuts. I was finally forced to admit what was going on when I apparently went out driving - unconscious - in the pursuit of food, and in the same night, did quite a bit of internet shopping. Oy. I was willing to hide sleep eating, but sleep driving was where I drew the line. I admitted what was happening in a number of forums, saw my Internist, and my medication was immediately changed. By this time, I was up around 5 pounds. I really felt it.
When we changed my nighttime medication, I thought my troubles were going to be over. But that was far from what happened. My eating frenzies switched to the daytime, and I couldn't believe what I was consuming! Loaves of bread. Bags of sugar products. Sometimes straight sugar. There was no rhyme or reason to what I was craving and couldn't resist, and the weight came on me in a big way. I ended up, over a few short weeks, a full 20 pounds over my desired goal weight.
I was panicked about the situation, amazingly not so much for the judgment that others might make (although I'm sure they're saying things behind my back), but for what it might do to my attitude and outlook. I have not forgotten the kind of lifestyle that I lived when I was fully obese and what kinds of interactions I had with the world, and the misconceptions I had about people and life and the misconceptions that people and life had about me. The fact remains that my weight, although not optimum, is still currently well within a normal range for a woman in her 50's, and there is still time to do something about it. But that seemed to be outside of my ability for the first time in years.
I started reporting to doctors and my Therapist that there was something wrong with my brain. I was losing focus, not just with eating which was getting crazier and crazier, but in general. I was losing the ability to organize. I was getting stuck on things like e-mail... I'd read and re-read the same messages over and over again rather than get on with other tasks. My condo was a squalor, my food supplies were running low. I was barely able to cope with medicating (IV'ing) Cosmos, and would cry at the drop of a hat. And my doctors started doing their typical shuffle, nobody wanting to take responsibility for finding out what was wrong.
And I gained weight. And I failed to get important things done like balancing my checkbook or doing the laundry even when I was running out of clothing and underwear and day-to-day cash. And I started thinking about death. My death.
Then the week where Ed McMahon and Farrah Fawcett and Michael Jackson all died came on and Richard, in his Project Me class, had us do an exercise on our Bucket List. Something snapped in me. My list was simple.
1. Outlive my dogs. (They're old and sick and certainly at this point will be put down if I die before them.)
2.) Complete my will. I really need to get it done and it only needs to be a boilerplate form from Office Depot. With no children and limited assets, my directions are simple and easy and very unlikely to be challenged.
3. Write letters to my friends.
As I listened to others Bucket List items in that class, I realized how they didn't really "get" the assignment. That they should be thinking big, and chasing grand schemes and dreams while they can. My list would include some really amazing items if I thought that they were at all achievable, but in my ongoing state of health, my expectations are low. With my brain misfiring more than ever, I left Richards class before it was even over, and went home and acted on my list. I wrote and sent my good-bye letter to my closest friends. I was done. With out a fully functioning brain, and something clearly going wrong, it was time to disassociate myself. And wait for things to get to the point where it was time to say goodbye to family and loved ones too.
My Therapist started to get really concerned at this point. We both determined that this was not depression; that there really was something wrong with me. And unlike former appointments, he actually sat there with a pad taking notes (like the stereotype except I wasn't laying down on the couch). I was in a personal hell. My speech was becoming affected by this point, and I was (and am) on-and-off having a hard time communicating verbally without stuttering. Surprisingly, I am still coherent with the written word. I insisted that I was losing my mind and that the family insanity had finally caught up with me. He insisted that there had to be a physical cause for this - it came on really fast and I could pinpoint the day and hours for him. I officially declared him the newest member of my doctor "It's not my department" team. But i was fortunate in that although he was clearly upset at that statement, he did not give up on me.
I ended up starting a stimulant. There was reason to believe that my Central Nervous System was being suppressed per both my Therapist and several of my doctors. At Dr. M's insistence, I followed up in making appointments with other doctors such as my Infectious Disease Specialist and my Neurologist. (I had decided to stop seeing everyone and it was only because of a long-term trust that has been built up between me and Dr. M- that I went along with it.) I knew that I was going to be incapable of asking for what I needed in these forums, so he even made phone calls to them for me before the appointments so that they not only had an idea of what was coming on, but took me seriously.
The first stimulant I took - Concerta - was done on my own and not under a physician's supervision. I have my connections. But I was quite forthright with Dr. M- about it, letting him know the next day that I had gotten it and had started it. And that there was a difference. It certainly wasn't perfect, but my energy and focus came up, and the eating binges stopped dead in their track. The reputation of stimulants is that you lose your appetite all together. That was not my Concerta experience. My eating stabilized. I got hungry, but went back to eating how I did before all these other troubles came on. And I regained some level of focus - although it didn't come back to normal - and lost a few pounds immediately.
I saw my Neurologist this last Friday, and he believes that something significant really is happening in my brain. He also did not think that Concerta was necessarily the best medicine for me, and changed it to Adderall, a more powerful stimulant with a stronger appetite suppressant. And I ate much less than normal yesterday (the first day on it) and was down another two pounds today. A total of 4 pounds down in a week.
This still leaves my weight significantly up, but now I'm back at closer to fighting weight. And I expect that I will be on this stimulant until they figure out what is wrong with me. I got to the point that I could not function in my life at all without it, and with it, although it's harder than normal to do things, I am more directed and am accomplishing tasks. To whit, I am going to straighten out my condo this morning. It's horrible, but I couldn't cope with dealing with it before. I think I have the energy and drive now to make a significant dent.
I'm also going to calculate out the true costs of the jewelry that I've produced in the last couple of weeks (I really need to take pictures and post them) so that I can respond when people ask what I want for it. That's been another ironic part of this roller coaster ride. I was making higher-quality jewelry than ever, but was unable to do the bookwork behind it to be able to sell it when people were expressing interest. I was even suspected of faking the rest of my symptoms because my jewelry output was still significant and becoming very high quality. But my accusers are not in my brain and don't know.
But now there is the quandary that I am really worried about, and the point of this whole missive. I can cope with the judgments made about my weight gain. In my world, and indeed in the world in general, weight gain is common. It's not so far gone yet that I am ostracized over it, and the only part that I feel at all bad about (other than personal worries about my state of health and mind) is that Richard has been using my pictures in his QVC promotions, and I adore him and don't want to let him down by not being what he is portraying. On the other hand, if this brain thing is fixed, I have no doubt that I can lose what I gained again in the same manner that I did before - naturally, and in the end, all will be well.
No, that's not what the worry is. In fact, I'm terrified at the judgments that might be made about me and the example that I am setting if I end up taking these stimulants for any length of time. That is a completely possible scenario. I have to admit that on the Adderall which I took yesterday for the first time, I felt so much more like myself except that I really didn't want to eat at all. My body told me when it could not go on any more without food, and I reacted appropriately when it did, and when the Adderall wore off (around 4 pm), then I was back to eating more than I should although I should note that I made pretty healthy choices. But the dosage did not hold me (my brain function) for the day, and the plan is for me to increase the Adderall to twice a day starting Tuesday. That should be enough to kill off my appetite completely.
That's the heart of the issue. I consider the appetite suppressant nature of this drug a very happy coincidental side effect, and certainly, I am no different than anyone else. I want the weight I gained off as quickly as possible. But it's the "how" that has me disturbed.
I am quite willing, given a normal brain function, to take my time and lose it slowly as I did when I was working on large numbers of pounds. I am very proud of the fact that I lost my weight naturally a la Richard's Food Program, and that I did not use diet pills or surgery or any unnatural means to spur me on. But my brain function is not normal right now, and the pills that they are giving me to hold me over until they figure out what is really wrong with me are going to make me lose weight quickly. And I like that too.
But a lot of people watch me. A LOT of people. People that I don't even know. And I worry about what kind of judgment they are making now. Whether they believe that I am taking these pills because of other issues, or just because of the weight. And whether they are going to go out and try to get some for themselves because of my example.
I like being a good example. I also like being at optimum weight. It took a long time for me to get used to the way that the world responded to me with a reasonable figure and make-up and hair (Richard pushed me in to doing all of these things and I bless him for opening my eyes up about it)and I like what the image that I project gets me. Call me conceited, but the better I look, the better service and treatment I get, and the more seriously I am taken. And I get a lot of free stuff too (or discounts). I can't resist a discount.
But back to the example. One of my best and also worst personality traits is that I am very forthright and honest. I just can't lie as a rule, and I'm not good at coloring stories either. When I am on these pills for a few weeks (for I'm sure it's going to be that long before they figure out and correct what my root issue is), and people comment on my weight loss, how am I going to respond? What kind of impression are they going to get? And am I going to inspire anyone into pursuing unsafe behavior?
I'm scared. I'm scared because I like feeling more normal. I'm scared because I like being at normal weight. I'm scared because I cannot and will not keep what is happening to me a secret, and am afraid that somebody else will be hurt because of my health struggles and the example that the stimulants are going to set.
And I'm scared that they will not figure out what is wrong with me and that the stimulants may, as the other mind-altering drugs that I am forced to take because of other health issues, become a permanent feature of my life.
My dream is to be normal. Not normal as society dictates because I have grown to accept and even enjoy my eccentricities. But normal in that I live a healthy lifestyle, that I am actually healthy, and that I am somebody that others want to emulate because what I do is good and fine.
I'm scared that taking the stimulants are going to give an incorrect impression of what the right thing to do is, even as they are currently the right thing for me. I only hope that if anybody is considering diet pills and is also watching what I am doing, they read this post and understand that I am NOT endorsing this mode of weight loss. I may even end up enjoying the rapid decrease that my doctors are looking for and expect, but I am not and never will be in favor of taking stimulants for this reason alone. All I really want to do is be able to function as I should. When I am able to do that, I will drop the Amphetamines like a hot potato and continue my second weight loss journey the right way. And I will happily accept the fact that it will take time and understand that the time that it takes is an opportunity for self exploration and personal growth.
That is both a promise and a guarantee.
I came back to Slimmons early this year, very concerned about my appearance and what it said about me. In fact, I saw a larger me in the mirror, despite my peer's insistence that I hadn't gained any weight. The couple of pounds up were located directly in my waist - nowhere else - and I could see it and feel it in my clothing. But I diligently went about increasing my exercise and watching my food, and a little bit came off.
Then the Ambien Troubles came on. Something changed in me, and I was apparently sleep walking and sleep eating on Ambien. I kept this issue a secret for quite a number of months. I was unaware that this was not unusual on that particular medication and was afraid of being judged for being nuts. I was finally forced to admit what was going on when I apparently went out driving - unconscious - in the pursuit of food, and in the same night, did quite a bit of internet shopping. Oy. I was willing to hide sleep eating, but sleep driving was where I drew the line. I admitted what was happening in a number of forums, saw my Internist, and my medication was immediately changed. By this time, I was up around 5 pounds. I really felt it.
When we changed my nighttime medication, I thought my troubles were going to be over. But that was far from what happened. My eating frenzies switched to the daytime, and I couldn't believe what I was consuming! Loaves of bread. Bags of sugar products. Sometimes straight sugar. There was no rhyme or reason to what I was craving and couldn't resist, and the weight came on me in a big way. I ended up, over a few short weeks, a full 20 pounds over my desired goal weight.
I was panicked about the situation, amazingly not so much for the judgment that others might make (although I'm sure they're saying things behind my back), but for what it might do to my attitude and outlook. I have not forgotten the kind of lifestyle that I lived when I was fully obese and what kinds of interactions I had with the world, and the misconceptions I had about people and life and the misconceptions that people and life had about me. The fact remains that my weight, although not optimum, is still currently well within a normal range for a woman in her 50's, and there is still time to do something about it. But that seemed to be outside of my ability for the first time in years.
I started reporting to doctors and my Therapist that there was something wrong with my brain. I was losing focus, not just with eating which was getting crazier and crazier, but in general. I was losing the ability to organize. I was getting stuck on things like e-mail... I'd read and re-read the same messages over and over again rather than get on with other tasks. My condo was a squalor, my food supplies were running low. I was barely able to cope with medicating (IV'ing) Cosmos, and would cry at the drop of a hat. And my doctors started doing their typical shuffle, nobody wanting to take responsibility for finding out what was wrong.
And I gained weight. And I failed to get important things done like balancing my checkbook or doing the laundry even when I was running out of clothing and underwear and day-to-day cash. And I started thinking about death. My death.
Then the week where Ed McMahon and Farrah Fawcett and Michael Jackson all died came on and Richard, in his Project Me class, had us do an exercise on our Bucket List. Something snapped in me. My list was simple.
1. Outlive my dogs. (They're old and sick and certainly at this point will be put down if I die before them.)
2.) Complete my will. I really need to get it done and it only needs to be a boilerplate form from Office Depot. With no children and limited assets, my directions are simple and easy and very unlikely to be challenged.
3. Write letters to my friends.
As I listened to others Bucket List items in that class, I realized how they didn't really "get" the assignment. That they should be thinking big, and chasing grand schemes and dreams while they can. My list would include some really amazing items if I thought that they were at all achievable, but in my ongoing state of health, my expectations are low. With my brain misfiring more than ever, I left Richards class before it was even over, and went home and acted on my list. I wrote and sent my good-bye letter to my closest friends. I was done. With out a fully functioning brain, and something clearly going wrong, it was time to disassociate myself. And wait for things to get to the point where it was time to say goodbye to family and loved ones too.
My Therapist started to get really concerned at this point. We both determined that this was not depression; that there really was something wrong with me. And unlike former appointments, he actually sat there with a pad taking notes (like the stereotype except I wasn't laying down on the couch). I was in a personal hell. My speech was becoming affected by this point, and I was (and am) on-and-off having a hard time communicating verbally without stuttering. Surprisingly, I am still coherent with the written word. I insisted that I was losing my mind and that the family insanity had finally caught up with me. He insisted that there had to be a physical cause for this - it came on really fast and I could pinpoint the day and hours for him. I officially declared him the newest member of my doctor "It's not my department" team. But i was fortunate in that although he was clearly upset at that statement, he did not give up on me.
I ended up starting a stimulant. There was reason to believe that my Central Nervous System was being suppressed per both my Therapist and several of my doctors. At Dr. M's insistence, I followed up in making appointments with other doctors such as my Infectious Disease Specialist and my Neurologist. (I had decided to stop seeing everyone and it was only because of a long-term trust that has been built up between me and Dr. M- that I went along with it.) I knew that I was going to be incapable of asking for what I needed in these forums, so he even made phone calls to them for me before the appointments so that they not only had an idea of what was coming on, but took me seriously.
The first stimulant I took - Concerta - was done on my own and not under a physician's supervision. I have my connections. But I was quite forthright with Dr. M- about it, letting him know the next day that I had gotten it and had started it. And that there was a difference. It certainly wasn't perfect, but my energy and focus came up, and the eating binges stopped dead in their track. The reputation of stimulants is that you lose your appetite all together. That was not my Concerta experience. My eating stabilized. I got hungry, but went back to eating how I did before all these other troubles came on. And I regained some level of focus - although it didn't come back to normal - and lost a few pounds immediately.
I saw my Neurologist this last Friday, and he believes that something significant really is happening in my brain. He also did not think that Concerta was necessarily the best medicine for me, and changed it to Adderall, a more powerful stimulant with a stronger appetite suppressant. And I ate much less than normal yesterday (the first day on it) and was down another two pounds today. A total of 4 pounds down in a week.
This still leaves my weight significantly up, but now I'm back at closer to fighting weight. And I expect that I will be on this stimulant until they figure out what is wrong with me. I got to the point that I could not function in my life at all without it, and with it, although it's harder than normal to do things, I am more directed and am accomplishing tasks. To whit, I am going to straighten out my condo this morning. It's horrible, but I couldn't cope with dealing with it before. I think I have the energy and drive now to make a significant dent.
I'm also going to calculate out the true costs of the jewelry that I've produced in the last couple of weeks (I really need to take pictures and post them) so that I can respond when people ask what I want for it. That's been another ironic part of this roller coaster ride. I was making higher-quality jewelry than ever, but was unable to do the bookwork behind it to be able to sell it when people were expressing interest. I was even suspected of faking the rest of my symptoms because my jewelry output was still significant and becoming very high quality. But my accusers are not in my brain and don't know.
But now there is the quandary that I am really worried about, and the point of this whole missive. I can cope with the judgments made about my weight gain. In my world, and indeed in the world in general, weight gain is common. It's not so far gone yet that I am ostracized over it, and the only part that I feel at all bad about (other than personal worries about my state of health and mind) is that Richard has been using my pictures in his QVC promotions, and I adore him and don't want to let him down by not being what he is portraying. On the other hand, if this brain thing is fixed, I have no doubt that I can lose what I gained again in the same manner that I did before - naturally, and in the end, all will be well.
No, that's not what the worry is. In fact, I'm terrified at the judgments that might be made about me and the example that I am setting if I end up taking these stimulants for any length of time. That is a completely possible scenario. I have to admit that on the Adderall which I took yesterday for the first time, I felt so much more like myself except that I really didn't want to eat at all. My body told me when it could not go on any more without food, and I reacted appropriately when it did, and when the Adderall wore off (around 4 pm), then I was back to eating more than I should although I should note that I made pretty healthy choices. But the dosage did not hold me (my brain function) for the day, and the plan is for me to increase the Adderall to twice a day starting Tuesday. That should be enough to kill off my appetite completely.
That's the heart of the issue. I consider the appetite suppressant nature of this drug a very happy coincidental side effect, and certainly, I am no different than anyone else. I want the weight I gained off as quickly as possible. But it's the "how" that has me disturbed.
I am quite willing, given a normal brain function, to take my time and lose it slowly as I did when I was working on large numbers of pounds. I am very proud of the fact that I lost my weight naturally a la Richard's Food Program, and that I did not use diet pills or surgery or any unnatural means to spur me on. But my brain function is not normal right now, and the pills that they are giving me to hold me over until they figure out what is really wrong with me are going to make me lose weight quickly. And I like that too.
But a lot of people watch me. A LOT of people. People that I don't even know. And I worry about what kind of judgment they are making now. Whether they believe that I am taking these pills because of other issues, or just because of the weight. And whether they are going to go out and try to get some for themselves because of my example.
I like being a good example. I also like being at optimum weight. It took a long time for me to get used to the way that the world responded to me with a reasonable figure and make-up and hair (Richard pushed me in to doing all of these things and I bless him for opening my eyes up about it)and I like what the image that I project gets me. Call me conceited, but the better I look, the better service and treatment I get, and the more seriously I am taken. And I get a lot of free stuff too (or discounts). I can't resist a discount.
But back to the example. One of my best and also worst personality traits is that I am very forthright and honest. I just can't lie as a rule, and I'm not good at coloring stories either. When I am on these pills for a few weeks (for I'm sure it's going to be that long before they figure out and correct what my root issue is), and people comment on my weight loss, how am I going to respond? What kind of impression are they going to get? And am I going to inspire anyone into pursuing unsafe behavior?
I'm scared. I'm scared because I like feeling more normal. I'm scared because I like being at normal weight. I'm scared because I cannot and will not keep what is happening to me a secret, and am afraid that somebody else will be hurt because of my health struggles and the example that the stimulants are going to set.
And I'm scared that they will not figure out what is wrong with me and that the stimulants may, as the other mind-altering drugs that I am forced to take because of other health issues, become a permanent feature of my life.
My dream is to be normal. Not normal as society dictates because I have grown to accept and even enjoy my eccentricities. But normal in that I live a healthy lifestyle, that I am actually healthy, and that I am somebody that others want to emulate because what I do is good and fine.
I'm scared that taking the stimulants are going to give an incorrect impression of what the right thing to do is, even as they are currently the right thing for me. I only hope that if anybody is considering diet pills and is also watching what I am doing, they read this post and understand that I am NOT endorsing this mode of weight loss. I may even end up enjoying the rapid decrease that my doctors are looking for and expect, but I am not and never will be in favor of taking stimulants for this reason alone. All I really want to do is be able to function as I should. When I am able to do that, I will drop the Amphetamines like a hot potato and continue my second weight loss journey the right way. And I will happily accept the fact that it will take time and understand that the time that it takes is an opportunity for self exploration and personal growth.
That is both a promise and a guarantee.
Wednesday, July 15, 2009
Speed
There is still something in my brain which is inhibiting life. However, in the past week, I started an experiment with Concerta. That's an ADHD medication, a stimulant, and it appears that I may be on the right track. While I am not back to normal, before I started it, my brain was like a hamster trying to run on a wheel, but somebody stuck their hand into the cage and wouldn't let the wheel spin. Since starting the Concerta, the hand is still there slowing the wheel down, but if the hamster works really hard, he can make the wheel go round.
I have to admit a great deal of concern about starting this kind of medication. Amphetamines. They have a terrible rap. They are one of the highest abused drugs around. I'm already taking so many medications (under doctor's orders) that influence my mind that it was a tough one to take on another.
My experience has been different, though, than what I would have expected. I thought I would be full of energy - out-of-control type energy like on a bipolar high. It's nothing like that at all.
When I first take it in the morning, I feel a little bit buzzed and rushed. But within an hour, I seem to settle down to a slow and low end normal for me. I can get projects done. I made it to all of my appointments today on time... a first in many weeks. I seem to be able to move from task to task instead of getting bogged down in whatever I am working on, unable to make the switch even though I know that the switch is critical. I've even, for the most part, stopped crying.
I had heard that the drug would completely kill my appetite. That would have been one of the happy side effects for me if it happened. Unfortunately, it's not true. On the other hand, the crazy binge eating which I absolutely felt compelled to do (my doctors theorize that it was my body trying to get energized any way it could) has stopped. I get hungry, but am able to slow down and prepare normal meals, and even eat at a normal pace. The urge to consume sugar, sugar, more sugar, and more sugar has left me. I also appear to be back to eating normal quantities of bread. My food habits have returned to what they were before I first started crying that something was wrong with my brain, and nobody was listening.
I saw my Infectious Disease Specialist today. He took blood and is testing for all sorts of things that could be contributing to my altered state of mind. Last fall when he found the Brucellosis and the C-Diff, I got initial positive readings on a number of other issues too. Follow up tests came up negative, though, so we moved forward assuming that they weren't there. However, with my immune system being suppressed at the level that it is (can we all say extreme suppression), it's possible that those issues were there and just brewing, and have come to a level of operation now that is making me go crazy. The results of those tests will be back in a few days.
In the meantime, Dr. F- joined the chorus of all of my other doctors who are insisting that I need to see a Neurologist and NOW. I finally gave up when my Therapist joined the chorus last week. My appointment is this Friday. I expect that I will be scheduled for a Head MRI post haste. Dr. F- pointed out that with the immune suppressants that I'm taking, it's possible that a mass is forming in my brain. It's imperative that it either be determined or ruled out. Ok then.
Between several of the appointments that I had today, I stopped by Slimmons. Anne's class was just wrapping up, and it was so wonderful to see her. She brought me up to date on a number of happenings, especially the auditions for Richard's next Video that are scheduled to take place this Saturday. I do not feel like it's a good idea to try and go back to class yet. I have a gut feeling that if I try, something terrible will happen and the Paramedics will be called. And you all know how I feel about those fucking bastards. So I am not going to class tomorrow, and Saturday will be a very bad idea because normally Saturdays are a zoo there anyway, and with the audition, it's sure to be packed to a point that nobody will be able to move.
In addition, I'm afraid that Richard might try to talk to me about what's been going on during Project Me. While I don't mind discussing it, and I don't mind discussing it in a group setting if that's what he would prefer, I don't think that this Saturday will be an appropriate day for it. Everyone needs to be up and cheerful for the auditions. If I start talking about it (assuming I am able to talk and am not in one of my stuttering phases), it will bring the mood of the class down. I really would like to talk to Richard about the whole situation, but not there and then. Later.
But Anne made a suggestion to me that I would really like to take her up on. She invited me to come to the Audition, park myself in a corner, and just watch the proceedings. Honestly, I would love to do it. It would be an opportunity to dip my toes back into Slimmons without the risk of actual exercise and physical disaster. I told her as much too. I told her I really wanted to come, but I did not want to be a distraction. So I've asked her to run the idea by Richard and if he's ok with it, I'm going to do it.
Of course, this is another landmine for me. My brain has been so off that I was unable to organize myself enough to work on his birthday present. His birthday was last Sunday, for those of you who don't know. I got it started this week, but it's not done, and it's likely not going to be done on Saturday. That's going to be embarrassing. Hopefully, the quality will be good enough when I finish that itwill make up for the delay. But it's hard to know. My brain isn't quite right when working on projects either. We'll see.
So now i'm waiting to hear back from Anne that it's ok to go on Saturday. I would dearly love to watch. I guess we'll see.
In the meantime, I have a feeling that this post is not all that organized and that I should probably sign off and go to bed. See. It's progress. I'm recognizing when it's time to quit the computer and do something else.
good night all.
I have to admit a great deal of concern about starting this kind of medication. Amphetamines. They have a terrible rap. They are one of the highest abused drugs around. I'm already taking so many medications (under doctor's orders) that influence my mind that it was a tough one to take on another.
My experience has been different, though, than what I would have expected. I thought I would be full of energy - out-of-control type energy like on a bipolar high. It's nothing like that at all.
When I first take it in the morning, I feel a little bit buzzed and rushed. But within an hour, I seem to settle down to a slow and low end normal for me. I can get projects done. I made it to all of my appointments today on time... a first in many weeks. I seem to be able to move from task to task instead of getting bogged down in whatever I am working on, unable to make the switch even though I know that the switch is critical. I've even, for the most part, stopped crying.
I had heard that the drug would completely kill my appetite. That would have been one of the happy side effects for me if it happened. Unfortunately, it's not true. On the other hand, the crazy binge eating which I absolutely felt compelled to do (my doctors theorize that it was my body trying to get energized any way it could) has stopped. I get hungry, but am able to slow down and prepare normal meals, and even eat at a normal pace. The urge to consume sugar, sugar, more sugar, and more sugar has left me. I also appear to be back to eating normal quantities of bread. My food habits have returned to what they were before I first started crying that something was wrong with my brain, and nobody was listening.
I saw my Infectious Disease Specialist today. He took blood and is testing for all sorts of things that could be contributing to my altered state of mind. Last fall when he found the Brucellosis and the C-Diff, I got initial positive readings on a number of other issues too. Follow up tests came up negative, though, so we moved forward assuming that they weren't there. However, with my immune system being suppressed at the level that it is (can we all say extreme suppression), it's possible that those issues were there and just brewing, and have come to a level of operation now that is making me go crazy. The results of those tests will be back in a few days.
In the meantime, Dr. F- joined the chorus of all of my other doctors who are insisting that I need to see a Neurologist and NOW. I finally gave up when my Therapist joined the chorus last week. My appointment is this Friday. I expect that I will be scheduled for a Head MRI post haste. Dr. F- pointed out that with the immune suppressants that I'm taking, it's possible that a mass is forming in my brain. It's imperative that it either be determined or ruled out. Ok then.
Between several of the appointments that I had today, I stopped by Slimmons. Anne's class was just wrapping up, and it was so wonderful to see her. She brought me up to date on a number of happenings, especially the auditions for Richard's next Video that are scheduled to take place this Saturday. I do not feel like it's a good idea to try and go back to class yet. I have a gut feeling that if I try, something terrible will happen and the Paramedics will be called. And you all know how I feel about those fucking bastards. So I am not going to class tomorrow, and Saturday will be a very bad idea because normally Saturdays are a zoo there anyway, and with the audition, it's sure to be packed to a point that nobody will be able to move.
In addition, I'm afraid that Richard might try to talk to me about what's been going on during Project Me. While I don't mind discussing it, and I don't mind discussing it in a group setting if that's what he would prefer, I don't think that this Saturday will be an appropriate day for it. Everyone needs to be up and cheerful for the auditions. If I start talking about it (assuming I am able to talk and am not in one of my stuttering phases), it will bring the mood of the class down. I really would like to talk to Richard about the whole situation, but not there and then. Later.
But Anne made a suggestion to me that I would really like to take her up on. She invited me to come to the Audition, park myself in a corner, and just watch the proceedings. Honestly, I would love to do it. It would be an opportunity to dip my toes back into Slimmons without the risk of actual exercise and physical disaster. I told her as much too. I told her I really wanted to come, but I did not want to be a distraction. So I've asked her to run the idea by Richard and if he's ok with it, I'm going to do it.
Of course, this is another landmine for me. My brain has been so off that I was unable to organize myself enough to work on his birthday present. His birthday was last Sunday, for those of you who don't know. I got it started this week, but it's not done, and it's likely not going to be done on Saturday. That's going to be embarrassing. Hopefully, the quality will be good enough when I finish that itwill make up for the delay. But it's hard to know. My brain isn't quite right when working on projects either. We'll see.
So now i'm waiting to hear back from Anne that it's ok to go on Saturday. I would dearly love to watch. I guess we'll see.
In the meantime, I have a feeling that this post is not all that organized and that I should probably sign off and go to bed. See. It's progress. I'm recognizing when it's time to quit the computer and do something else.
good night all.
Saturday, July 4, 2009
Michael Jackson, Prescription Medications, and Me
A week since Michael Jackson passed, and I have to admit that I'm way more disturbed by it than I was initially. My immediate reaction upon hearing the news, albeit it makes me sound really cold, was "good riddance." I'm quite familiar how "inappropriate behavior" can influence a lifetime of choices and decisions. I'm also quite aware of how he has influenced Pop music and Pop Culture. He was a force somewhat akin to the Beatles and Elvis... more than just the music that he produced. But to my mind, that does not mitigate using individual power and influence to take advantage of innocents.
In the week of incessant press that followed his death, I've read some of it; watched some of it. Most of it is the news agencies creating their own news by engaging in rumor, speculation, and innuendo to drive their own needs, and few facts have actually come forth. But there was one report in the Huffington Post that caught my eye and has tortured me since reading it. In it, they disclosed that MJ had Lupus.
I know a little bit about Lupus. I know a little bit about Auto Immune diseases in general. They have ruined my life as I had planned it in my youth; I'm unable to sustain enough energy or health to work at a regular job; medically I'm un-insurable without outside help, so I'm not able to pursue more unorthodox methods of bringing in income in any significant way. But what I talk about very little is the pain. And there is a lot of it. Continuous, unremitting pain at various decibels over time. Sometimes at a level that I can work through and even appear perfectly normal, while at other times, I'm incapacitated. Even those who see me a lot (like at Slimmons) don't generally understand the depth of what is happening, and frankly, it's not something that I care to discuss. The only people who really understand the implications of Auto Immune Disease are other afflicted people.
A lot of the speculation as to the cause of his death was drug abuse. There is ongoing discussion of excessive pain medications housed in his home, reports of him being so affected by it at times that he was unable to function, countered by others that he was obsessed by healthy living and choices. I can't help but personalize this topic. If you were to go through my medicine chest (well, actually, all over my home), you'd find a cornucopia of medications that would make your heart beat faster. Pain meds... Darvocet, Percocet, Neurontin, Ultram, Celebrex, Vicodin, and many many others. Sleep meds and mood stablizers... Ambien, Klonipin, Xanax, Valium, Prozac, Zoloft, Lyrica, and many others. Asthma/Restrictive lung Disease meds... Advair, Spriva, Albuterol, Singular, and others... Hormone replacement meds, Steroids, BP medications. Antibiotics of all sorts. Massive quantities of syringes and accompanying injectables in my refrigerator as well as my cabinets. I will give you that all of the prescriptions are written under my name so I am not and have never tried to hide any of this. But does the possession of this quantity and assortment of drugs make me a drug addict?
I can imagine what, if I were famous and the press were following my death, what would be said about me. You'd see officials carrying out medications in big bags, just like they are filmed doing at MJ's Holmby Hills home. "How could she have built up such a supply and assortment of drugs? Who would prescribe all of that to her? She must be an evil drug abuser!"
Nothing could be farther from the truth. I hate the medications that I am forced to keep in my home. I hate that I have to take them. I hate that there is such a build-up, and many of them have not been opened in a year or more, but I'm afraid to throw them out for fear that I will need them and not have immediate access when I do.
The nasty truth about autoimmune disease is that you never know where it is going to strike you next, or how it is going to manifest. Pain Meds that are effective when I am suffering from Fibromyalgia are not when I am having severe Crohns cramps. Lupus and arthritis pains require something else. Sometimes I'm not sure which of my conditions are causing what, so I may have two or three on my nightstand at any given time.
Auto Immune suppressants rotate in my home too. Sometimes one thing is effective for a while, and then it stops working, so I move on to something else. Then something else and something else and something else and eventually usually come back to the old medication again. All under doctor's instructions.
My sleep is effected by my disease process along with my mood. Those closest to me know that I've been complaining for weeks about something "being in my brain." I can't focus, I can't organize, and I'm certainly not getting a lot of sleep. Rest is critical for Auto Immune patients, and my doctors have not only been cooperative, but have encouraged the use of certain sleep agents to allow me the maximum amount possible (maybe 3 to 5 hours a night as of late).
Am I a drug addict? Or am I responding to an unremitting and unbearable medical situation that there is no cure for? My friends and doctors, knowing me and my attitudes and habits, would strongly endorse the latter. I know the latter to be true. But that doesn't mean that I am not, on occasion, stoned out of my mind in an attempt to get some relief. How would unfamiliars view me? I fear I know.
So now we come back to Michael Jackson. The man had Lupus. I didn't know this until I read the report. What formerly seemed eccentricities all of a sudden make perfect sense. The umbrella and the hats? That's about Lupus. Sunlight makes the flares much worse. The mask? Probably about autoimmune vulnerabilities. The glove? He turned it into a fashion statement. Now that I think about it, though, how much do you want to bet that there was some kind of support going on under it that he had the right to keep private?
The massive amounts of prescription medications in his home? Of all the unfavorable reports we've heard about MJ over the years, drug abuse was one that was not one that was circulated. His inner circle clearly knew that he was imbibing excessive amounts, but they also likely knew the extent of his medical issues and, as things got worse, they understood what he was doing and why.
Certainly I do. Lupus shuts down organs; it burns muscle, it swells veins, it immobilizes joints, and it messes with your mind.
I do not have nor do I have the access to the kind of medications that MJ purportedly held in his home. I don't have the financial wherewithal to get them, nor do I have the influence. On the other hand, I do not have the same kind of commitments that the man had either. He was about to launch a very public come-back. (Stress makes auto immune issues flare so much worse.) He, unlike me, did not have the option of backing down if issues of body became unbearable. He absolutely had to move on no matter how his body was revolting; no matter how much pain that was not visible to the uninitiated-to-lupus-crowd might notice. He certainly needed his meds in a much more immediate way than I, and I understand unbearable pain. I understand trying to keep face when my body is failing me. (I was recently told by somebody close to me to get over the pity party because I was no longer able to put on the show... I suppose that person was not used to me not being able to cope with the ramifications of my illness.)
So where does that leave me regarding MJ? I do personalize the situation. I can't help it. I, to some extent, know the hell of not being able to depend on anything, not even one's own body.
Do I endorse the hospital-quality meds that he was purportedly taking? I'm keeping an open mind. I do not think he was suicidal at all; rather, I think he was trying to get relief from unremitting pain. Pain that nobody recognized or understood. The kind of symptoms that they think you're crazy for having, and nobody will do business with you if they do understand.
Do I forgive him for 'inappropriate behavior' if it was true? And I do believe it.
No. I can never forgive that kind of thing. But I'm starting to think he paid his penance for it. Auto Immune is the kind of hell that nobody, and I mean NOBODY deserves, no matter what they may or may not have done.
And, for the record, there have been times that if I had been able to lay my hands on the kind of meds that MJ purportedly took, I'd grab them up in a minute. I am not a drug addict. I get no pleasure from any of my prescription medications. But I do understand what it is to hurt.
In the week of incessant press that followed his death, I've read some of it; watched some of it. Most of it is the news agencies creating their own news by engaging in rumor, speculation, and innuendo to drive their own needs, and few facts have actually come forth. But there was one report in the Huffington Post that caught my eye and has tortured me since reading it. In it, they disclosed that MJ had Lupus.
I know a little bit about Lupus. I know a little bit about Auto Immune diseases in general. They have ruined my life as I had planned it in my youth; I'm unable to sustain enough energy or health to work at a regular job; medically I'm un-insurable without outside help, so I'm not able to pursue more unorthodox methods of bringing in income in any significant way. But what I talk about very little is the pain. And there is a lot of it. Continuous, unremitting pain at various decibels over time. Sometimes at a level that I can work through and even appear perfectly normal, while at other times, I'm incapacitated. Even those who see me a lot (like at Slimmons) don't generally understand the depth of what is happening, and frankly, it's not something that I care to discuss. The only people who really understand the implications of Auto Immune Disease are other afflicted people.
A lot of the speculation as to the cause of his death was drug abuse. There is ongoing discussion of excessive pain medications housed in his home, reports of him being so affected by it at times that he was unable to function, countered by others that he was obsessed by healthy living and choices. I can't help but personalize this topic. If you were to go through my medicine chest (well, actually, all over my home), you'd find a cornucopia of medications that would make your heart beat faster. Pain meds... Darvocet, Percocet, Neurontin, Ultram, Celebrex, Vicodin, and many many others. Sleep meds and mood stablizers... Ambien, Klonipin, Xanax, Valium, Prozac, Zoloft, Lyrica, and many others. Asthma/Restrictive lung Disease meds... Advair, Spriva, Albuterol, Singular, and others... Hormone replacement meds, Steroids, BP medications. Antibiotics of all sorts. Massive quantities of syringes and accompanying injectables in my refrigerator as well as my cabinets. I will give you that all of the prescriptions are written under my name so I am not and have never tried to hide any of this. But does the possession of this quantity and assortment of drugs make me a drug addict?
I can imagine what, if I were famous and the press were following my death, what would be said about me. You'd see officials carrying out medications in big bags, just like they are filmed doing at MJ's Holmby Hills home. "How could she have built up such a supply and assortment of drugs? Who would prescribe all of that to her? She must be an evil drug abuser!"
Nothing could be farther from the truth. I hate the medications that I am forced to keep in my home. I hate that I have to take them. I hate that there is such a build-up, and many of them have not been opened in a year or more, but I'm afraid to throw them out for fear that I will need them and not have immediate access when I do.
The nasty truth about autoimmune disease is that you never know where it is going to strike you next, or how it is going to manifest. Pain Meds that are effective when I am suffering from Fibromyalgia are not when I am having severe Crohns cramps. Lupus and arthritis pains require something else. Sometimes I'm not sure which of my conditions are causing what, so I may have two or three on my nightstand at any given time.
Auto Immune suppressants rotate in my home too. Sometimes one thing is effective for a while, and then it stops working, so I move on to something else. Then something else and something else and something else and eventually usually come back to the old medication again. All under doctor's instructions.
My sleep is effected by my disease process along with my mood. Those closest to me know that I've been complaining for weeks about something "being in my brain." I can't focus, I can't organize, and I'm certainly not getting a lot of sleep. Rest is critical for Auto Immune patients, and my doctors have not only been cooperative, but have encouraged the use of certain sleep agents to allow me the maximum amount possible (maybe 3 to 5 hours a night as of late).
Am I a drug addict? Or am I responding to an unremitting and unbearable medical situation that there is no cure for? My friends and doctors, knowing me and my attitudes and habits, would strongly endorse the latter. I know the latter to be true. But that doesn't mean that I am not, on occasion, stoned out of my mind in an attempt to get some relief. How would unfamiliars view me? I fear I know.
So now we come back to Michael Jackson. The man had Lupus. I didn't know this until I read the report. What formerly seemed eccentricities all of a sudden make perfect sense. The umbrella and the hats? That's about Lupus. Sunlight makes the flares much worse. The mask? Probably about autoimmune vulnerabilities. The glove? He turned it into a fashion statement. Now that I think about it, though, how much do you want to bet that there was some kind of support going on under it that he had the right to keep private?
The massive amounts of prescription medications in his home? Of all the unfavorable reports we've heard about MJ over the years, drug abuse was one that was not one that was circulated. His inner circle clearly knew that he was imbibing excessive amounts, but they also likely knew the extent of his medical issues and, as things got worse, they understood what he was doing and why.
Certainly I do. Lupus shuts down organs; it burns muscle, it swells veins, it immobilizes joints, and it messes with your mind.
I do not have nor do I have the access to the kind of medications that MJ purportedly held in his home. I don't have the financial wherewithal to get them, nor do I have the influence. On the other hand, I do not have the same kind of commitments that the man had either. He was about to launch a very public come-back. (Stress makes auto immune issues flare so much worse.) He, unlike me, did not have the option of backing down if issues of body became unbearable. He absolutely had to move on no matter how his body was revolting; no matter how much pain that was not visible to the uninitiated-to-lupus-crowd might notice. He certainly needed his meds in a much more immediate way than I, and I understand unbearable pain. I understand trying to keep face when my body is failing me. (I was recently told by somebody close to me to get over the pity party because I was no longer able to put on the show... I suppose that person was not used to me not being able to cope with the ramifications of my illness.)
So where does that leave me regarding MJ? I do personalize the situation. I can't help it. I, to some extent, know the hell of not being able to depend on anything, not even one's own body.
Do I endorse the hospital-quality meds that he was purportedly taking? I'm keeping an open mind. I do not think he was suicidal at all; rather, I think he was trying to get relief from unremitting pain. Pain that nobody recognized or understood. The kind of symptoms that they think you're crazy for having, and nobody will do business with you if they do understand.
Do I forgive him for 'inappropriate behavior' if it was true? And I do believe it.
No. I can never forgive that kind of thing. But I'm starting to think he paid his penance for it. Auto Immune is the kind of hell that nobody, and I mean NOBODY deserves, no matter what they may or may not have done.
And, for the record, there have been times that if I had been able to lay my hands on the kind of meds that MJ purportedly took, I'd grab them up in a minute. I am not a drug addict. I get no pleasure from any of my prescription medications. But I do understand what it is to hurt.
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