Back to the blog! I noticed that the last entry was on August 12, 2011. Hmmm, maybe there is something about August that makes me want to write. My birthday? It does make me a bit introspective. One of the problems with my birthday, is it is one of those fixed points on my life's time line. I can look back and remember where I was and what I was doing on that same date over the years. I am feeling pretty darn good that I can still look back and remember what I was doing. My memory seems to be growing much weaker than the one I was proud to have. Maybe the bragging fairies are at work here? Whatever, the long term memory is still intact.
I have had some really wonderful birthdays. For a number of years, I would seek out adventures. I road class 5 rapids on the Ocoee River in N GA. One year I participated in a fire walk, and ended up with only a tiny blister on the bottom of my foot. (others were not so lucky). I have gone camping, mooned the moon, hiked, and drank myself sober on my birthday. All good memories. I have spent most birthdays with friends, very few alone....and for that I am grateful. On my 30th birthday, I was in school getting my master's degree. My class mates had the cafeteria make blueberry shortcake and bring it to our classroom.....that was special.
People say that getting older is hard to accept. Thirtieth birthdays seem to be the one when most people experience some anxiety. I did not. Getting older has never been something that I cared much about. I always wanted to get older. I hung out with older kids, so I wanted to be their age. I believe I spent most of my childhood and youth wanting to be older for various reasons. That seemed to stop once I could get into the bars at age 18. (legally....LOL). I spent my early child hood wanting to get old enough to go to school. Then I wanted to get old enough to...write cursive, walk to the store with friends, use a pen, have homework (that one changed fast), go to middle school, get my driver's permit, go to high school, get my driver's license, graduate, become legal....and drink. (hey I am from Montana, where every other building is a bar, and drinking and driving was a sport).
The other milestones in life were not so much around age, as accomplishments. Going to college, graduating from college, getting that first job in your chosen career, getting raises....etc. Mostly when I look back over my life, what stands out most is friends. Maybe because I am an only child, but friends were always the most important part of my life. It makes me a bit sad to have lost touch with many friends. But I suppose that is part of life.
Looking back over the years, I would say I had both a very hard life, and a really good life. I once did a pastel drawing of my life. It was abstract, and actually came out as 2 separate pieces. My friend looked at them and said that no one's life was that diametrically opposed. Mine was/is. And for that reason, I am trying to find some balance.
That brings me to my current age. Not that age has anything to do with this. I recently wrote on my Face Book time-line, that I was having a hard time reading people's posts about all the good things going on in their lives. I am having this reaction because Dercum's Disease is taking away the ability to do what I once was capable of doing. Birthdays are hard. I am now coming to terms with all this illness is taking away from me. I look back and realize that I can no longer walk as far, or sit as long, or talk as long.....and I get scared... and sad.
One response left on my time-line is one that I want to respond to in another blog. (I am not able to sit here long enough to write much more). The response was basically about finding the positive in the negative. The comment was about a friend of the writers who is bedridden, and her illness has brought her closer to her Lord, and how she is using that to reach out and inspire others. She suggests I go to this woman's website. In many ways I can relate to this. However, I will not be using references to religion, I will be talking about spirituality. Having an illness that decreases or stops the ability to move easily on this Earth, does give one the time for introspection. As I said to someone recently, I am now much more a human being, than a human doing.
If I can commit to writing regularly in this blog, I hope to help readers sit for awhile in my P.J.s...yeah, that sounds bad.....but I was going to write...walk a mile in my shoes....but that doesn't work. LOL I am hoping to bring more awareness to Dercum's Disease, and what it is like to live with a rare illness in a rural setting. But, I also hope to grow through this writing. I am trying to figure out who I am. I can tell you easily who I am not, or who I am no longer.....but who I am, well that is in the infancy stage. And there you have it....back to birth. I hope I can keep this interesting enough to not completely bore you. But then again, if that is the case.....read it before bed!!! LOL Good night....
Showing posts with label Dercum's Disease. Show all posts
Showing posts with label Dercum's Disease. Show all posts
Sunday, August 4, 2013
Sunday, May 1, 2011
Into the LIght of the Day...
Dear Dercum's Disease, or should I call you by your other name? Adiposis Dolorosa....
For a number of years now, you have taken up residence in my body. I don't know why. Why did you choose me? What makes me a good host for you? You must have some way of overcoming my desires, hopes, thoughts. Because I did not invite you (at least on this plane of existence), nor am I wanting you to continue to stay. But you do...you bastard.
Because of you, I have lost my ability to go out and make a living. Although having enough money to live on would be a nice thing..it really isn't even about the money that makes me want to choke you. It is that you stole the way I had a reason to live. I felt good about myself when I was working with people. Both my clients and my co-workers. I felt like I was making a difference, or at least attempting to. I worked with adolescents and their families. I used to say jokingly, when my job got a little hard..."Well, off to change the world, one kid at a time".....but in my heart and soul, I hoped that this was true. I hoped that by working with any of the people I have worked with over the years, that this was my way to make a positive mark on our world. It was my way of hopefully working toward a kinder and gentler nation. But, then you came into my life, and I began to watch that slowly go away. In fact, it was slowly...so much so that in the beginning, I didn't realize it was you. You were there, silently taking over. My brain was not able to comprehend the way that you came unbidden and started killing me slowly. But there you were, you won.
At first, I tried to hide you. I tried to work and not pay attention to the pain. I tried to cover up that I was not able to concentrate, to make decisions. Partly you accomplished through the pain levels that were starting to make moving through this life difficult, but you also started messing with my mind. Subtly, but I noticed. It caused your friend fear to circle me constantly. My shiny aura was turning dark, and people were noticing. I don't think they understood that it was you that was changing me. Heck, I am not sure I was was aware that it was you....but nevertheless, you won. My coworkers, who were my friends, all started leaving me, as you....you are like an abusive lover...you want me all to yourself. So you made me say things, and do things that were not my personality, but people didn't understand that. They just said..."what is wrong with you" mostly to themselves....they thought I was changing. I was, into what you wanted.
Then, after you accomplished having me to yourself, you decide that you will also take away everything that I like to do. You are very mean. You have these ways of making me seem like I am a bad person, or non compliant. The doctors tell me that exercise is good for me....well, aren't you the cheeky one to make exercise be part of what makes me worse. So, my walks in the woods, my goals to hike the Appalachian Trail evaporated into a distant desire. I like to play music, you make that hurt too much. I like to paint, to draw, to do pottery, weave beads, make jewelry....I have lots of things I like to do, I am lucky that way....I used to say "I never get bored"...well, you have certainly seen to it that I can't do any of that anymore. I try to adapt, to get around your ways to shut me down.....but you seem to find ways to end everything I hold dear. (But, I don't give up, I keep finding ways....but I am not going to say that out loud, as I know you are just waiting to see what you can do to me next!)
So, my friends are gone, my hobbies are gone, my ability to take care of myself financially are gone, my ability to take care of myself in many ways are gone.....and it is all your fault. I hate you.
The other really amazing thing you do, is make people think that all this is my fault. You figured out how to take all this away from me, but what you kept intact......the way I look. In fact, you don't make me gaunt and sickly looking, you make me fat. No one believes that you can become fat without overeating, so everyone thinks that I am just lazy and don't know good nutrition. So this also makes me a liar in other's eyes. You have set it up so that no one sees you, they only see what you have manipulated.
I have learned how to work with you. I no longer cry tears of anger, and sadness that you have entered my life. I try to let people know that you are responsible for my current condition...I am outing you! I know others who don't want to let people know that you are trying to ruin their lives, and that is ok, but I have decided that I am telling as many people as I can about you. You have hidden far too many years. So long in fact that people think you are rare.
Here is what I want. I am telling people about you so that you can no longer hide. I am hoping that people will realize that you are just as bad as AIDS, heart disease, or Diabetes. People think I am just wanting to take pain killers to become non-functional and watch TV all day....really? Have I ever done that in my life???? I have worked, sometimes 2 and 3 jobs at a time. I have worked hard, and I have played hard. I enjoyed so many things, I had many interests and dreams....I had places to go, and people to meet. I was a kind of gypsy, I have always enjoyed travel and learning new cultures. You have taken that away, and I want people to know it is you...it is not me being lazy. And then the ultimate that people, including me, don't want to know or think about......you are a killer. You don't just stop at giving your victims pain, and fatigue, and weakness, and weight gain, and a host of other symptoms...nope...you kill. So, I am confused why people do not take you more seriously.
I am hoping that people read this, and realize that to end your grasp over me, to make you go away, there has to be research into how to do this. Because, as I have already said, you are good at hiding. But, we have at least one person who has dedicated her life to finding a way to eradicate you off the face of this Earth! She is hero to many of us. She is Doctor Karen Herbst. We are hoping that people will understand that I want this pain to end. I want all the medication that I am on, including the narcotics, to be a thing I can talk about in the past. That is now where my dreams go. I dream that one day, people will take you seriously, they will help Dr Herbst by sending her money to continue her research.
Please, those of you who may read this, I am asking for your help. I hope this doesn't make you mad. But those of us with this illness, this intruder into our lives, need your help. We are weak, in pain, fatigued beyond comprehension. We do what we can, but we would like you to help us get our dreams back. You can do this by sending money into the Fat Disorders Research Society (google them for info on how to donate), you can offer to help us out around the house, or by doing errands. You can also help by listening to us without judgment. If we tell you we use narcotics for pain, please....we don't need lectures about addiction, or your hand held out because you want us to share. If we tell you we can't come over to your party, please don't take that personal, we really want to be there and it makes us mad that we can no longer do things that are fun and to others are relaxing. Please also realize that this illness is real, and it is serious. It is progressing and prognosis can be death if a lipoma affects the lungs or heart. Your support to help us become warriors not worriers against this illness is what we want.
I began this blog writing to the illness that has invaded my body, and ended it with an appeal to readers of this blog (hopefully there may be a few! LOL) I am hoping that both of you are listening. And, if you could do me a big favor.....I would love if you could ask your friends, colleagues, family members to read this. I want awareness of this illness to come into the light of day. Namaste my readers.....I hope your dreams come true!
Sunday, August 15, 2010
Never Heard Of That?
Ok, another blog that is basically a rant, as I have to write about this or I will just wallow in it, so may as well get it out.....I can't sleep. I have had sleep problems for many years, but this is a little bit different. Yes, no sleep can make for some interesting thoughts and behaviors. Sometimes it is even funny....like when you fall asleep while writing to someone in chat.....but it isn't all funny.
I have these lipomas all over my body. The ones that hurt the worst are on my upper thighs/hip region, my rib cage, and my abdomen. These things cause excrutiating pain. They burn, sting, feel like a deep bruise, and basically don't let up. They are worse when they are first forming. Then, they seem to come and go, or more realistically, they swell and hurt and then go down and don't hurt as badly. But, they are a literal pain!
The worst, and what is causing me to come here and cry, is trying to sleep. I can not find a comfortable position to save my life! I have always been a side sleeper, almost all my life....I can no longer do this. When I am so totally exhausted that I do fall asleep, I tend to roll onto my side and then YOWZA....I am wide awake because it feels like I have been stabbed. The lipomas in my upper/outter thighs (hip area), are very painful to the touch.
I also have these little pockets of fat filled pain on and around my lower spine. (where arthritis is also present). So, laying on my back is also one exercise in futility. I can sometimes find a partial sitting up position to be somewhat comfortable. This is the way I can usually fall asleep, and why I tend to fall asleep while I am on the computer, or watching TV. But, and maybe I should say butt.....there is also tailbone pain. When this strikes, it absolutely takes my breath away. It feels like vice grips are squeezing my tail bone. I don't know if this is caused by lipomas or if it is something else, but this pain would have me running to the ER if it lasts much more than an hour....luckily, it hasn't, or has responded to pain killers.
Ok, so I can't sleep on my side, or back...well......the lipomas around my rib cage, and lower (mostly) and upper abdomen area are also screaming their little fatty tumor heads off. The other day I was visiting yet another specialist, this one the gastroenterologist....and he was doing his exam and said "Oh, it feels like you have a hernia, has any one told you that?" I told him I thought it was a lipoma, as they are everywhere if he continues to feel around....he did, while I bit my tongue and winced. He just looked as me with a strange kind of puzzled look on his face. I told him what I think these are, and he said "Never heard of that". Well, whatever, but these are what keeps me from sleeping on my stomach.
The other day, I went to a PT. I thought maybe a combination of pool therapy, and a walker may get me able to walk more, get a little more exercise. So, in order to do that, I was subjected to more poking and prodding. He feels all these lumps, and says "Hmmm, what are these?" I tell him and he says...."Never heard of that". I tell him that I know that strengthening muscles are usually the answer to help with pain, and that may be the case here....but what really hurts are the lipomas in my thigh area that seem to be pulled downward by gravity when I am upright and walking. He agreed that the pool is the best place, and wants me to hold off on the walker. I am ok with holding off on the walker, and I LOVE pool therapy.....but, will it make the pain of the lipomas go away? Not sure, and of course, since he had "never heard of that"...how can he answer that.
To make a long story short, since I have been in the hospital, I now have 3 rare illnesses. One may have cleared up following knee surgery a few years ago.....that would be great, as apparently PVNS is difficult to get rid of. My diagnosis after being in the hospital are some kind of myositis, and rhabdomyolysis. I don't know that much about the latter, but the former is....you guessed it...rare! But, most of these specialists have heard about this diagnosis.....
Ok, now here comes the diagnosis that no one knows about...Dercum's Disease. It is the fatty tumors, the lipomas, and possibly inflammation in the fat cells. I wish it would be easy to lose weight and make it go away, but it doesn't work that way.....so, since no one really knows what it is, no one knows how to treat it.....no one is coming up with any way to help me with it....
There is one doctor in the US who researches and understands this disease. She is in San Diego. I am trying to figure out how to get to San Diego to see her. It isn't easy with no money. But, where there is a will, there is a way.
But until then, I guess I will continue to toss and turn trying to find a comfortable way to exist in this world....yes, I didn't say sleep, as it is not just trying to sleep, it is trying to live.....I toss and turn even when standing up! I will continue to have to toss away and turn down invitations to parties, get togethers, movies, etc.......I will continue to have a social life that is mostly on the computer and phone. (thank God for those friends who have stuck by me, and who call and keep in touch with me. I am an extrovert, I like to be around most people, this forced isolation makes it difficult to remain positive and content in my world. The adventure of never knowing how I am going to feel each day, makes planning anything in advance almost impossible).
Until then I will continue to try to forget about those comments, those experiences like the one at the pharmacy...because the only thing I have found that makes my life a little more tolerable is narcotic pain meds. There are two kind of responses when people find out I am on narcotics....either they hold out their hand, or they become judgmental. That makes me want to cry. (Again, I thank God for those friends who understand, and do not challenge me, or suggest a better way to deal with pain, as in the many years I have been dealing with this, there really isn't much I have not already tried. The odd thing about this illness I have, different approaches work, for awhile, then seem to quit. I have tried naturopathic, chiropractic, homeopathic, energy healing, many many different kinds of medications, meditation, physical therapy, prayer, art therapy, talk therapy including CBT, EMDR, narrative, and other approaches, and massage.....whew....and I am not sure that exhausted that list).
So, I will continue to try to educate, to explain, to ignore, those who can't possibly understand what it is I am going through, because they have "never heard of that".
I have these lipomas all over my body. The ones that hurt the worst are on my upper thighs/hip region, my rib cage, and my abdomen. These things cause excrutiating pain. They burn, sting, feel like a deep bruise, and basically don't let up. They are worse when they are first forming. Then, they seem to come and go, or more realistically, they swell and hurt and then go down and don't hurt as badly. But, they are a literal pain!
The worst, and what is causing me to come here and cry, is trying to sleep. I can not find a comfortable position to save my life! I have always been a side sleeper, almost all my life....I can no longer do this. When I am so totally exhausted that I do fall asleep, I tend to roll onto my side and then YOWZA....I am wide awake because it feels like I have been stabbed. The lipomas in my upper/outter thighs (hip area), are very painful to the touch.
I also have these little pockets of fat filled pain on and around my lower spine. (where arthritis is also present). So, laying on my back is also one exercise in futility. I can sometimes find a partial sitting up position to be somewhat comfortable. This is the way I can usually fall asleep, and why I tend to fall asleep while I am on the computer, or watching TV. But, and maybe I should say butt.....there is also tailbone pain. When this strikes, it absolutely takes my breath away. It feels like vice grips are squeezing my tail bone. I don't know if this is caused by lipomas or if it is something else, but this pain would have me running to the ER if it lasts much more than an hour....luckily, it hasn't, or has responded to pain killers.
Ok, so I can't sleep on my side, or back...well......the lipomas around my rib cage, and lower (mostly) and upper abdomen area are also screaming their little fatty tumor heads off. The other day I was visiting yet another specialist, this one the gastroenterologist....and he was doing his exam and said "Oh, it feels like you have a hernia, has any one told you that?" I told him I thought it was a lipoma, as they are everywhere if he continues to feel around....he did, while I bit my tongue and winced. He just looked as me with a strange kind of puzzled look on his face. I told him what I think these are, and he said "Never heard of that". Well, whatever, but these are what keeps me from sleeping on my stomach.
The other day, I went to a PT. I thought maybe a combination of pool therapy, and a walker may get me able to walk more, get a little more exercise. So, in order to do that, I was subjected to more poking and prodding. He feels all these lumps, and says "Hmmm, what are these?" I tell him and he says...."Never heard of that". I tell him that I know that strengthening muscles are usually the answer to help with pain, and that may be the case here....but what really hurts are the lipomas in my thigh area that seem to be pulled downward by gravity when I am upright and walking. He agreed that the pool is the best place, and wants me to hold off on the walker. I am ok with holding off on the walker, and I LOVE pool therapy.....but, will it make the pain of the lipomas go away? Not sure, and of course, since he had "never heard of that"...how can he answer that.
To make a long story short, since I have been in the hospital, I now have 3 rare illnesses. One may have cleared up following knee surgery a few years ago.....that would be great, as apparently PVNS is difficult to get rid of. My diagnosis after being in the hospital are some kind of myositis, and rhabdomyolysis. I don't know that much about the latter, but the former is....you guessed it...rare! But, most of these specialists have heard about this diagnosis.....
Ok, now here comes the diagnosis that no one knows about...Dercum's Disease. It is the fatty tumors, the lipomas, and possibly inflammation in the fat cells. I wish it would be easy to lose weight and make it go away, but it doesn't work that way.....so, since no one really knows what it is, no one knows how to treat it.....no one is coming up with any way to help me with it....
There is one doctor in the US who researches and understands this disease. She is in San Diego. I am trying to figure out how to get to San Diego to see her. It isn't easy with no money. But, where there is a will, there is a way.
But until then, I guess I will continue to toss and turn trying to find a comfortable way to exist in this world....yes, I didn't say sleep, as it is not just trying to sleep, it is trying to live.....I toss and turn even when standing up! I will continue to have to toss away and turn down invitations to parties, get togethers, movies, etc.......I will continue to have a social life that is mostly on the computer and phone. (thank God for those friends who have stuck by me, and who call and keep in touch with me. I am an extrovert, I like to be around most people, this forced isolation makes it difficult to remain positive and content in my world. The adventure of never knowing how I am going to feel each day, makes planning anything in advance almost impossible).
Until then I will continue to try to forget about those comments, those experiences like the one at the pharmacy...because the only thing I have found that makes my life a little more tolerable is narcotic pain meds. There are two kind of responses when people find out I am on narcotics....either they hold out their hand, or they become judgmental. That makes me want to cry. (Again, I thank God for those friends who understand, and do not challenge me, or suggest a better way to deal with pain, as in the many years I have been dealing with this, there really isn't much I have not already tried. The odd thing about this illness I have, different approaches work, for awhile, then seem to quit. I have tried naturopathic, chiropractic, homeopathic, energy healing, many many different kinds of medications, meditation, physical therapy, prayer, art therapy, talk therapy including CBT, EMDR, narrative, and other approaches, and massage.....whew....and I am not sure that exhausted that list).
So, I will continue to try to educate, to explain, to ignore, those who can't possibly understand what it is I am going through, because they have "never heard of that".
Tuesday, July 20, 2010
now what?
Hello again. Well, I guess it is back to the drawing board once again. I went to the rheumatologist (I can't ever spell that right), today, and she was really nice, but yet again, I am coming away sans diagnosis. Well, I have a little one, possible metabolic myositis, which is very rare. She thinks, and I hope, that this last episode that landed me in the hosptial twice, may have been some funky reaction to meds that I have been on for years, but just "turned against me". Basically, these are statins for high cholesterol levels. She is going to suggest to my doctor, (but said that if it were her, she may just wait to see if I have another episode), that there is an expert in this at Dartmouth that I could go see. I think I will wait. I really don't care anymore.
I continue to think that what I am having is a combination of ehlers daniels syndrom (EDS), fibromyalgia, and dercums, with a smattering of osteoarthritis thrown in for fun. At first she said that my knees showed no signs of arthritis, (from her physical exam), but then I told her my MRI and orthopedic surgeon say differently. She pulled up the MRI, and said...."well look at that, you do". However, because I am sooooo flexible, it just doesn't look like I have stiffness like you would find in typical arthritis knees. Yep, that would be the EDS, which she agreed. So, I am relieved and also kind of mad. It is that strange place of wanting it to be something that can be treated, so it will go away, and glad it is nothing that is serious and can be treated but means more meds, more tests, etc.
Because she was so nice, I decided to ask her some other questions, like....can this just be some strange genetic mutation that is just me? She shrugged. I am beginning to think this. This happens all the times, and I drive doctors crazy. I get these whacked out lab results, or test results, then months, weeks, days, hours later....they are back to normal. Amazing healing abilities? Maybe. Ok, here is where it is going to get either very informative, strange, or entertaining.....but, I think I am the liver of the world!
Really! Sometimes, I think that everything just passes through me, and I heal it...but in the meantime, I pick it up. Is that really any crazier than dercum's, or fibromyalgia, or the common cold? My whole life has been about suffering. I won't bore all of you with why I say that, I am sure some of you who have known me would agree, and others are scratching your heads and wondering WTH is she talking about. The fact, that I think my whole life has been about suffering, yet here I am, fairly intact. Fairly able to laugh with the best of them, and avoid crying with most of them....well, I think that says something. Does it say I am strong? maybe Does it say I am just nuts? maybe Does it say that I am just focusing on the bad, and maybe everyone has this, I just pay more attention to it....(believe me, I have heard this).....well, that I don't think so.
So, now we go back to the narcotic pain killers. Do I need them? Well, I think so, but then again, how would I know, as apparently they trick you into thinking you need them. That is the "current thinking", so says many of the docs. Well, I am about at the point of saying, "OK, lets give that a try". God bless me for even thinking this! I know what my life is like without these evil little pills. It SUCKS. But, ok, maybe THEY have a point, and I do not know what I am doing. If I can pull up any amount of bravery, the next time I see my PCP.....I just may explore this, and do an experiment. If he will agree to detox me in the most unpainful way possible (I have been on these things for years, I don't think detox will be pretty) even if that means some rehab (and hopefully one that can work with chronic pain, not just chronic abusers of meds), then I might, just might agree to do a little experiment. If I do this, I don't think you can expect me to be very "around", but who knows....maybe it will be the answer. I don't know. I am just as confused as everyone else.
In my heart of hearts, I don't think that what I have is your common garden variety fibromyalgia. I just don't. I do think it explains some of my symptoms. I think that Dercum's explains many of my symptoms too. But, I just want my life back. Ok, so if it is the narcotics that are robbing me from my life....then lets get rid of them (she, the nice new doc suggested this may be the case, but did say that with, well, that is what is in the literature currently) hmmmm, I wonder, how much influence does the DEA have with that literature? But, who am i to question those who "know"?
I certainly have well meaning friends and family who think I should get off those "horrible" things. I don't know, who are they listening to? They are what makes me functional. But, right now I am barely functional with them, so why not go whole hog non-functional and see what happens? Well, fear for one answer. Pain is not easy to live with my friends (as many of you know), I fear that I will just "go away". I can leave my body pretty fast, and my fear is that I may choose to leave it, and just not return. No, I am not talking suicide or anything like that, I am just talking the ability to disassociate. I learned that as a child. Nice tool to have if you don't mind sitting and staring into space with a blank look on your face.
This is such an ever lasting, on going, time consuming battle in my head. And people think we like to take these meds! I don't know. This is yet again, one of those posts that I should probably chalk up to, getting my ya ya's out, and not for public consumption....but then again, I know not just me struggles with these issues. I bet, there are many of us out there who would just like to have a life that is filled with love, laughter, joy, happiness, contentment.....isn't that what everyone wants. Ok, now I am crying.....for I just don't see that in my future. Not to the degree that I want it. I see me coping with this pain, I see me having moments of joy and happiness, and of course laughter (cuz I love me some laughter), but I don't see it as sustainable. That is what scares me. NO, THIS IS NOT DEPRESSION SPEAKING....I think it is reality speaking. I so want to work again, to be out amongst the public, as most of you know, I am pretty darned extroverted (except when the pain and fatigue make me very darned introverted, but that is more like a forced state of being). But, I don't see that happening. I used to. I used to think that there was something i could do......but, that hope has slipped away. Well wait, not that it has totally slipped, I mean, I don't ever seeing me doing the kinds of jobs that I want to do. There is probably something I can do, if it is very flexible and accomodating????
Ok, I can't take up anymore of your, or my time with this......one of these days, there will be someone who will come up with an answer. Patience, is something that I have. In fact maybe to a fault....but right now, there are Monks in Tibet praying for me, who don't even know me, there are people who are working to figure out what is going on with our bodies/psyches/souls and how they all connect.....I think they will figure it out one day. Until then, I will continue to pray, to be a "liver" if that is my job, and to hopefully keep laughing.....cuz that really is the only medicine I like to take!
I continue to think that what I am having is a combination of ehlers daniels syndrom (EDS), fibromyalgia, and dercums, with a smattering of osteoarthritis thrown in for fun. At first she said that my knees showed no signs of arthritis, (from her physical exam), but then I told her my MRI and orthopedic surgeon say differently. She pulled up the MRI, and said...."well look at that, you do". However, because I am sooooo flexible, it just doesn't look like I have stiffness like you would find in typical arthritis knees. Yep, that would be the EDS, which she agreed. So, I am relieved and also kind of mad. It is that strange place of wanting it to be something that can be treated, so it will go away, and glad it is nothing that is serious and can be treated but means more meds, more tests, etc.
Because she was so nice, I decided to ask her some other questions, like....can this just be some strange genetic mutation that is just me? She shrugged. I am beginning to think this. This happens all the times, and I drive doctors crazy. I get these whacked out lab results, or test results, then months, weeks, days, hours later....they are back to normal. Amazing healing abilities? Maybe. Ok, here is where it is going to get either very informative, strange, or entertaining.....but, I think I am the liver of the world!
Really! Sometimes, I think that everything just passes through me, and I heal it...but in the meantime, I pick it up. Is that really any crazier than dercum's, or fibromyalgia, or the common cold? My whole life has been about suffering. I won't bore all of you with why I say that, I am sure some of you who have known me would agree, and others are scratching your heads and wondering WTH is she talking about. The fact, that I think my whole life has been about suffering, yet here I am, fairly intact. Fairly able to laugh with the best of them, and avoid crying with most of them....well, I think that says something. Does it say I am strong? maybe Does it say I am just nuts? maybe Does it say that I am just focusing on the bad, and maybe everyone has this, I just pay more attention to it....(believe me, I have heard this).....well, that I don't think so.
So, now we go back to the narcotic pain killers. Do I need them? Well, I think so, but then again, how would I know, as apparently they trick you into thinking you need them. That is the "current thinking", so says many of the docs. Well, I am about at the point of saying, "OK, lets give that a try". God bless me for even thinking this! I know what my life is like without these evil little pills. It SUCKS. But, ok, maybe THEY have a point, and I do not know what I am doing. If I can pull up any amount of bravery, the next time I see my PCP.....I just may explore this, and do an experiment. If he will agree to detox me in the most unpainful way possible (I have been on these things for years, I don't think detox will be pretty) even if that means some rehab (and hopefully one that can work with chronic pain, not just chronic abusers of meds), then I might, just might agree to do a little experiment. If I do this, I don't think you can expect me to be very "around", but who knows....maybe it will be the answer. I don't know. I am just as confused as everyone else.
In my heart of hearts, I don't think that what I have is your common garden variety fibromyalgia. I just don't. I do think it explains some of my symptoms. I think that Dercum's explains many of my symptoms too. But, I just want my life back. Ok, so if it is the narcotics that are robbing me from my life....then lets get rid of them (she, the nice new doc suggested this may be the case, but did say that with, well, that is what is in the literature currently) hmmmm, I wonder, how much influence does the DEA have with that literature? But, who am i to question those who "know"?
I certainly have well meaning friends and family who think I should get off those "horrible" things. I don't know, who are they listening to? They are what makes me functional. But, right now I am barely functional with them, so why not go whole hog non-functional and see what happens? Well, fear for one answer. Pain is not easy to live with my friends (as many of you know), I fear that I will just "go away". I can leave my body pretty fast, and my fear is that I may choose to leave it, and just not return. No, I am not talking suicide or anything like that, I am just talking the ability to disassociate. I learned that as a child. Nice tool to have if you don't mind sitting and staring into space with a blank look on your face.
This is such an ever lasting, on going, time consuming battle in my head. And people think we like to take these meds! I don't know. This is yet again, one of those posts that I should probably chalk up to, getting my ya ya's out, and not for public consumption....but then again, I know not just me struggles with these issues. I bet, there are many of us out there who would just like to have a life that is filled with love, laughter, joy, happiness, contentment.....isn't that what everyone wants. Ok, now I am crying.....for I just don't see that in my future. Not to the degree that I want it. I see me coping with this pain, I see me having moments of joy and happiness, and of course laughter (cuz I love me some laughter), but I don't see it as sustainable. That is what scares me. NO, THIS IS NOT DEPRESSION SPEAKING....I think it is reality speaking. I so want to work again, to be out amongst the public, as most of you know, I am pretty darned extroverted (except when the pain and fatigue make me very darned introverted, but that is more like a forced state of being). But, I don't see that happening. I used to. I used to think that there was something i could do......but, that hope has slipped away. Well wait, not that it has totally slipped, I mean, I don't ever seeing me doing the kinds of jobs that I want to do. There is probably something I can do, if it is very flexible and accomodating????
Ok, I can't take up anymore of your, or my time with this......one of these days, there will be someone who will come up with an answer. Patience, is something that I have. In fact maybe to a fault....but right now, there are Monks in Tibet praying for me, who don't even know me, there are people who are working to figure out what is going on with our bodies/psyches/souls and how they all connect.....I think they will figure it out one day. Until then, I will continue to pray, to be a "liver" if that is my job, and to hopefully keep laughing.....cuz that really is the only medicine I like to take!
Saturday, July 17, 2010
New Day, New Emotions...or I love my friends!!!
Well, I got through yesterday. It wasn't easy. However, with some loving responses and phone calls from from my new kindred, and my cousin.....life got better. Well, I can't lie, the visit to the doctor to get additional pain killers to help with the pain was also a big factor. At least today I can walk without cringing and crying.
So my dear readers, what is on my mind today? Today is filled with possibilities! Quite different from yesterday, huh? Yes, my life has had to take a very different turn. Those possibilities, at least for now, are not what they used to be. There is no way I am driving very far, or taking a walk on my favorite trail, or doing anything that requires much physical exertion. I am afraid those days are over. I am not sure that my doctors would say the same thing, but I know. I can feel how far my body has declined in the past months. I know it is not purely deconditioning, as I try to do things (as you have read), even simple enjoyable things.....and I can no longer participate in them. So, it isn't for lack of trying. And, as I have now realized, that trying can put me down now for days......so, I have to realize, at least for now, and maybe forever.....what I used to think of as fun and socialization....may be over.
So, today.....today is a new day, with a new attitude. And, I was just sitting here wondering what I was going to do today. Planning my day, as it were. The thing that surprised me, is I don't think the day is long enough to get in all the things I want to do....and I mean things that I CAN do. This is exciting and wonderous to me, especially after the crash of yesterday.
So, what is it I can do? Well, I am in the middle of a book that I have been reading, and that is nice as for a few months there, I could not even read. So, that feels like something I would like to do. Of course there is my art work. I am working on a new yarn painting that I am very much enjoying. And, for those of you who have read the first chapter, and have encouraged me to continue....I have a book to write. I also have a number of movies that I have recorded onto my DVR that I need to watch soon, or they will POOF! LOL....
I am also hoping to start a new painting. Well actually, two. One of an image a friend took while visiting the US from Australia. It is an amazing photo she took at the San Diego Zoo of a wolf that she got to howl. She used photoshop to place the wolf into a very cool setting. She sent it to me to see her photoshop work, and gave me permission to paint it. I am very excited about this!!! The other, is a line from a poem another friend wrote. The line blew me away with it's imagery, so again, I asked permission to attempt to put it into a visual image, and she gave me her blessing.
AND THEN...he he...see!!!!! Of course, after taking that encaustics class (that I still can not believe what a generous and beautiful gift that was) I want to set up a studio to continue to do this work. I really should not spend the money (although, I am half way there because of my batik background), but one of these days, when I believe I can drive that far....I will go into Montpelier and get the needed supplies. I am VERY excited about that! Hmmm, maybe that is something I can get my social worker to do with me...hmmm??? LOL.
I do know though, that after taking that class, and the crash and pain that followed....I will have to work very slowly. But, that is the beauty of that medium...it allows for that.
So my friends.....if you see me heading down that path of feeling like because my life has changed so much, I am a different person, with nothing I can do any more.....remind me. Remind me that life is good, and needs to be documented...hence this blog! I know that many of you out there reading this have similar issues. I know your body has changed, has become something that seems so out of control, so foreign that you don't know what to do with yourself, well.....just sit, allow....know that the answer will come. The hopes and dreams that you had may not be within reach any longer, but there will be new ones that come into our lives. Be patient, they will come. (yah, I know, that is kind of odd for me to say, since yesterday, I thought my life would never have joy in it again, but see, see how fast it can turn around) he he he he!!!
Of course there are going to be bad days. That, I think, is unfortunate and inevitable. There will be days when the pain, the fatigue, the weakness will take over (as one friend who has Dercum's Disease calls it "the monster"), but it is temporary. Remember to hang on, to reach out (especially to those who love to laugh....muchas gracias to my late night friend and cousin calls last night)....and to remember, that even when you don't think anyone does or can.....you are loved. If you can't think of anyone....please remember this, and think of me!!! OK? Is that a deal?
Now, off to make my day one of creative fun, creative expression, along with the required rest!!! which even that at times can be a little more creative than I want (dreams).....LOL
I love you all, nameste!!!
So my dear readers, what is on my mind today? Today is filled with possibilities! Quite different from yesterday, huh? Yes, my life has had to take a very different turn. Those possibilities, at least for now, are not what they used to be. There is no way I am driving very far, or taking a walk on my favorite trail, or doing anything that requires much physical exertion. I am afraid those days are over. I am not sure that my doctors would say the same thing, but I know. I can feel how far my body has declined in the past months. I know it is not purely deconditioning, as I try to do things (as you have read), even simple enjoyable things.....and I can no longer participate in them. So, it isn't for lack of trying. And, as I have now realized, that trying can put me down now for days......so, I have to realize, at least for now, and maybe forever.....what I used to think of as fun and socialization....may be over.
So, today.....today is a new day, with a new attitude. And, I was just sitting here wondering what I was going to do today. Planning my day, as it were. The thing that surprised me, is I don't think the day is long enough to get in all the things I want to do....and I mean things that I CAN do. This is exciting and wonderous to me, especially after the crash of yesterday.
So, what is it I can do? Well, I am in the middle of a book that I have been reading, and that is nice as for a few months there, I could not even read. So, that feels like something I would like to do. Of course there is my art work. I am working on a new yarn painting that I am very much enjoying. And, for those of you who have read the first chapter, and have encouraged me to continue....I have a book to write. I also have a number of movies that I have recorded onto my DVR that I need to watch soon, or they will POOF! LOL....
I am also hoping to start a new painting. Well actually, two. One of an image a friend took while visiting the US from Australia. It is an amazing photo she took at the San Diego Zoo of a wolf that she got to howl. She used photoshop to place the wolf into a very cool setting. She sent it to me to see her photoshop work, and gave me permission to paint it. I am very excited about this!!! The other, is a line from a poem another friend wrote. The line blew me away with it's imagery, so again, I asked permission to attempt to put it into a visual image, and she gave me her blessing.
AND THEN...he he...see!!!!! Of course, after taking that encaustics class (that I still can not believe what a generous and beautiful gift that was) I want to set up a studio to continue to do this work. I really should not spend the money (although, I am half way there because of my batik background), but one of these days, when I believe I can drive that far....I will go into Montpelier and get the needed supplies. I am VERY excited about that! Hmmm, maybe that is something I can get my social worker to do with me...hmmm??? LOL.
I do know though, that after taking that class, and the crash and pain that followed....I will have to work very slowly. But, that is the beauty of that medium...it allows for that.
So my friends.....if you see me heading down that path of feeling like because my life has changed so much, I am a different person, with nothing I can do any more.....remind me. Remind me that life is good, and needs to be documented...hence this blog! I know that many of you out there reading this have similar issues. I know your body has changed, has become something that seems so out of control, so foreign that you don't know what to do with yourself, well.....just sit, allow....know that the answer will come. The hopes and dreams that you had may not be within reach any longer, but there will be new ones that come into our lives. Be patient, they will come. (yah, I know, that is kind of odd for me to say, since yesterday, I thought my life would never have joy in it again, but see, see how fast it can turn around) he he he he!!!
Of course there are going to be bad days. That, I think, is unfortunate and inevitable. There will be days when the pain, the fatigue, the weakness will take over (as one friend who has Dercum's Disease calls it "the monster"), but it is temporary. Remember to hang on, to reach out (especially to those who love to laugh....muchas gracias to my late night friend and cousin calls last night)....and to remember, that even when you don't think anyone does or can.....you are loved. If you can't think of anyone....please remember this, and think of me!!! OK? Is that a deal?
Now, off to make my day one of creative fun, creative expression, along with the required rest!!! which even that at times can be a little more creative than I want (dreams).....LOL
I love you all, nameste!!!
Friday, July 2, 2010
Wasted days...or how to live with an invisable disability
I just woke up. It is 1:25 in the freaking afternoon! Of course, I think when I fell asleep it was around 9am, but still. I do not like wasting these days of summer. It isn't like I live in a place where we can take these days for granted!
It also isn't like I can say, oh well, I have the rest of the day to go do what I want to do.....it just isn't like that in my world. I just woke up, but it is going to take me at least, and I mean at least, an hour to move easily. My muscles/joints/fat...whatever....is all screaming at me. So, now, I wait for the pain killers to kick in. I should have taken one around 8am, but I missed that one....so now I am paying for it. Maybe you reader, maybe you are too going to pay for it, as I don't think this is going to be a cheery, kind of positive look at how to live with chronic illness/pain kind of post.
I don't think I have explained what it is that is making me feel this way. Partially, that is because no one really knows. I have a plethora of diagnosis, of ideas of well intended friends and family, and of internet based ah ha's. But, lets just go with the current "working" diagnosis (or whatever the plural of diagnose is)....
For many years, I have been going on the diagnosis of Chronic Fatigue, and Fibromyalgia. And before that, it was called fibocitis (but that was just one doctor many years ago who I thought was a quack, mainly because I didn't like that diagnoses, which turned out he was probably right). But, I have been getting worse. I have been telling my doctors that i believe I was getting worse, but...fibromalgia does not get worse, there is no progression to it.....so someone was not correct. (although I love my current doctor, there have been times..........) And of course that someone had to be me....as I don't know my own body, and apparently lab work doesn't lie.
But, I was getting worse. I could feel it. I was not wanting more pain killers so I could get high, that is ridiculous to me, as I don't even get high from the stupid things......but because there are apparently more people out there who do take them to get high,than who actually take them for medical reasons, I must be wrong. I must be wanting more, because those people out there who do get high ask for more, so they can get higher.......no, I JUST WANTED THIS FREAKING PAIN TO STOP. Now, if he were going to write his opinion of this, my doc may see things differently...but here is my take on it: he wanted to believe me, he did believe me.....but then, there are those other medical professionals who are saying look at those drug seekers, beware of those drug seekers.....and then there is the DEA saying....watch out, all those people are drug seekers, all they want is either to get high, or sell those drugs to people getting high......they are bad people all those people on pain killers....watch out.
" But but, this woman is nice, and she seems to be in sooo much pain, but wait, didn't I just give her a prescription the other day, and here she is asking for more...hmmmm, maybe those DEA/drug seeking believing docs are for real............" anyway, that is kind of what I imagine is going on in his head....but I know, the pain/fatigue/weakness was getting worse.
So, it did. It got so worse (I know that is not correct grammar), it landed me in the hospital two times within a 2 week time span.
The first time, they figured it was the narcotics. After all, it looked like an OD, or at the very least, it looked like my kidney's failed because I was so gorked out on the narcotics that I must have forgotten to drink fluids.....(my doctor was on vacation during this episode of my life), so get the kidney's functioning, take her off of her pain killers (well most of them, we don't want any nasty withdrawals going on), and send her home. (oh, how I got to the hospital in the first place, my friend came over the night before and I was not making much sense. So being worried about me, she came over the next day, and found me unresponsive, eyes rolled back in head, doing something that looked like seizing.....she called 911). I didn't believe them, I didn't think I had taken too many pain killers....but I had just been prescribed a more potent, and different kind, so maybe???, but it still just didn't seem right to me, but as we already have established....who am I in this story. anyway? I had read however, that kidney failure can make you delusional, so....I wondered???
Ok, round two: I am not going into the details....but two weeks later, I was feeling so sick, I didn't know if I was dying, or just wanted to....and I really didn't care. I was praying that God would just take me.....but, instead my prayers were answered by putting me in the hospital when my doc, the one who knows and seems to care about me....was on call. And low and behold, he did some sleuthing, and it was not anywhere close to me being on pain killers that was the culprit....but he also had no idea what was. What we do know: my immune system appears to be attacking my muscles, which then makes some kind of enzyme get into my blood stream and when it gets to the kidneys, they say "I can't handle that, I think I will just shut down". (ok, this is my version of the story.....again, I am sure my doc would have a few more words to use, those big doctory words that keep us from understanding what is really going on with our own bodies). But anyway, now I have a new diagnosis, but only a working one, as some of the tests suggest it is, and some say no way.....but for now, lets call it myositis. Oh, and by the way....yes, there is a reason for your pain! And, guess what, the pain killers had nothing to do with this problem, and well looky there.....you are taking them as prescribed. (that is not my doc's voice, again I think he is somewhere close to God at this point (although he doesn't think that, and that is why I like him). But, I have lots of other medical professionals in my head who deserve a good talkin' to! LOL....
Now, just for fun....lets throw in another diagnosis.....this is one I have come up with, and I think my doc believes, but I am not totally sure. I have had these wickedly painful lumps in my body for years. In fact, about 15 years ago, a rather large one formed and was so painful that at times I thought I would pass out. But, yet again, "this person has no idea how her body works, silly little thing, must just be wanting narcotics".......but OMG this thing hurt. They all told me, that it was nothing, it was just a lipoma, a fatty tumor (but of course I would have those, as I was [at the time] more than 100 lbs over weight) and, those don't hurt.....so, go way, and leave us to do some doctorin on those that really have problems. (please know, that my current doc was not in the picture at this time). But a few years later, he was, and by that time, I had named this thing "louis" Louis the Lump. The good doc would ask ever so often about louis, but, he could not figure out exactly what louis was, as lipomas don't hurt. well, yes they do....according to the internet and a diagnosis called "dercum's disease". It is listed as #3 on the NORD list. Which NORD stands for National Organization of Rare Diseases. (There are quite a few of us who have this, and we are banding together...so watch out you disbelievers!!!).
Ok, so there is my entirely too long explanation of why you will be reading (I hope) this blog of what do to when your body gives up on you (funny, that song to the show "COPS" was just being sung to what I just wrote: bad bod, bad bod, what ya going to do? what you going to do when it gives up on you, bad bod..." he he...
So, I am still going through tests, and being referred to other docs who have other opinions, but "at least it is something". Yep, at least it is something......and now that I have written this, maybe if someone is actually reading this, is maybe reading this and saying "wow, that sounds like me, maybe I should look into Dercum's..or Myositis".....then, maybe my day is also not so wasted!
It also isn't like I can say, oh well, I have the rest of the day to go do what I want to do.....it just isn't like that in my world. I just woke up, but it is going to take me at least, and I mean at least, an hour to move easily. My muscles/joints/fat...whatever....is all screaming at me. So, now, I wait for the pain killers to kick in. I should have taken one around 8am, but I missed that one....so now I am paying for it. Maybe you reader, maybe you are too going to pay for it, as I don't think this is going to be a cheery, kind of positive look at how to live with chronic illness/pain kind of post.
I don't think I have explained what it is that is making me feel this way. Partially, that is because no one really knows. I have a plethora of diagnosis, of ideas of well intended friends and family, and of internet based ah ha's. But, lets just go with the current "working" diagnosis (or whatever the plural of diagnose is)....
For many years, I have been going on the diagnosis of Chronic Fatigue, and Fibromyalgia. And before that, it was called fibocitis (but that was just one doctor many years ago who I thought was a quack, mainly because I didn't like that diagnoses, which turned out he was probably right). But, I have been getting worse. I have been telling my doctors that i believe I was getting worse, but...fibromalgia does not get worse, there is no progression to it.....so someone was not correct. (although I love my current doctor, there have been times..........) And of course that someone had to be me....as I don't know my own body, and apparently lab work doesn't lie.
But, I was getting worse. I could feel it. I was not wanting more pain killers so I could get high, that is ridiculous to me, as I don't even get high from the stupid things......but because there are apparently more people out there who do take them to get high,than who actually take them for medical reasons, I must be wrong. I must be wanting more, because those people out there who do get high ask for more, so they can get higher.......no, I JUST WANTED THIS FREAKING PAIN TO STOP. Now, if he were going to write his opinion of this, my doc may see things differently...but here is my take on it: he wanted to believe me, he did believe me.....but then, there are those other medical professionals who are saying look at those drug seekers, beware of those drug seekers.....and then there is the DEA saying....watch out, all those people are drug seekers, all they want is either to get high, or sell those drugs to people getting high......they are bad people all those people on pain killers....watch out.
" But but, this woman is nice, and she seems to be in sooo much pain, but wait, didn't I just give her a prescription the other day, and here she is asking for more...hmmmm, maybe those DEA/drug seeking believing docs are for real............" anyway, that is kind of what I imagine is going on in his head....but I know, the pain/fatigue/weakness was getting worse.
So, it did. It got so worse (I know that is not correct grammar), it landed me in the hospital two times within a 2 week time span.
The first time, they figured it was the narcotics. After all, it looked like an OD, or at the very least, it looked like my kidney's failed because I was so gorked out on the narcotics that I must have forgotten to drink fluids.....(my doctor was on vacation during this episode of my life), so get the kidney's functioning, take her off of her pain killers (well most of them, we don't want any nasty withdrawals going on), and send her home. (oh, how I got to the hospital in the first place, my friend came over the night before and I was not making much sense. So being worried about me, she came over the next day, and found me unresponsive, eyes rolled back in head, doing something that looked like seizing.....she called 911). I didn't believe them, I didn't think I had taken too many pain killers....but I had just been prescribed a more potent, and different kind, so maybe???, but it still just didn't seem right to me, but as we already have established....who am I in this story. anyway? I had read however, that kidney failure can make you delusional, so....I wondered???
Ok, round two: I am not going into the details....but two weeks later, I was feeling so sick, I didn't know if I was dying, or just wanted to....and I really didn't care. I was praying that God would just take me.....but, instead my prayers were answered by putting me in the hospital when my doc, the one who knows and seems to care about me....was on call. And low and behold, he did some sleuthing, and it was not anywhere close to me being on pain killers that was the culprit....but he also had no idea what was. What we do know: my immune system appears to be attacking my muscles, which then makes some kind of enzyme get into my blood stream and when it gets to the kidneys, they say "I can't handle that, I think I will just shut down". (ok, this is my version of the story.....again, I am sure my doc would have a few more words to use, those big doctory words that keep us from understanding what is really going on with our own bodies). But anyway, now I have a new diagnosis, but only a working one, as some of the tests suggest it is, and some say no way.....but for now, lets call it myositis. Oh, and by the way....yes, there is a reason for your pain! And, guess what, the pain killers had nothing to do with this problem, and well looky there.....you are taking them as prescribed. (that is not my doc's voice, again I think he is somewhere close to God at this point (although he doesn't think that, and that is why I like him). But, I have lots of other medical professionals in my head who deserve a good talkin' to! LOL....
Now, just for fun....lets throw in another diagnosis.....this is one I have come up with, and I think my doc believes, but I am not totally sure. I have had these wickedly painful lumps in my body for years. In fact, about 15 years ago, a rather large one formed and was so painful that at times I thought I would pass out. But, yet again, "this person has no idea how her body works, silly little thing, must just be wanting narcotics".......but OMG this thing hurt. They all told me, that it was nothing, it was just a lipoma, a fatty tumor (but of course I would have those, as I was [at the time] more than 100 lbs over weight) and, those don't hurt.....so, go way, and leave us to do some doctorin on those that really have problems. (please know, that my current doc was not in the picture at this time). But a few years later, he was, and by that time, I had named this thing "louis" Louis the Lump. The good doc would ask ever so often about louis, but, he could not figure out exactly what louis was, as lipomas don't hurt. well, yes they do....according to the internet and a diagnosis called "dercum's disease". It is listed as #3 on the NORD list. Which NORD stands for National Organization of Rare Diseases. (There are quite a few of us who have this, and we are banding together...so watch out you disbelievers!!!).
Ok, so there is my entirely too long explanation of why you will be reading (I hope) this blog of what do to when your body gives up on you (funny, that song to the show "COPS" was just being sung to what I just wrote: bad bod, bad bod, what ya going to do? what you going to do when it gives up on you, bad bod..." he he...
So, I am still going through tests, and being referred to other docs who have other opinions, but "at least it is something". Yep, at least it is something......and now that I have written this, maybe if someone is actually reading this, is maybe reading this and saying "wow, that sounds like me, maybe I should look into Dercum's..or Myositis".....then, maybe my day is also not so wasted!
Subscribe to:
Posts (Atom)