Am I Lying?

May 8, 2013 at 7:14 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , , , , , )

It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.

It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.

I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”

But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.

This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)

I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.

I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.

When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.

And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.

In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.

In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.

Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.

How does any of this have to do with whether or not I’m a liar?

I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.

I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.

I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.

I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.

I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.

That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.

I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.

I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.

I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.

When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals  and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.

It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.

Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.

But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.

So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.

 

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This is a Sacred Space

April 20, 2013 at 8:21 am (Spiritual) (, , , , , , , , , , , )

I’ve been doing this balancing act for a few days now. I don’t feel comfortable sharing all the details of my medical situation on the Internet any more, not even here. That feeling defeats the purpose of having the blog to begin with. It’s all garbled up in my head and I am trying to tease it out into a long, single strand that makes sense all around.

When the Regretsians first found my blog and started making fun of me and the stuff I write (and the stuff I believe in), I was a little hurt. Eventually, I put on my big boy pants and fucking dealt with it. I posted to the forum and I addressed them here as well. The story ended very well; even though I don’t really read or post there anymore, I still go back and can always find some person I knew (oh so many years months ago).  It’s worth noting that Loki was proud of me, proud enough that He had me mark the occasion permanently.

There will always be people who will take whatever I write on my blog and use it for their personal enjoyment. I think it’s despicable and low to mine a blog about my medical condition and chronic illness for such things, but my opinion doesn’t count and I’m okay with that.

But there is real harm happening. There are people who subscribed to this blog because they really do want to know what’s going on with me, and I find myself hesitant to write about anything at all.

I prayed about it, and this is what I was Told: This blog is a sacred act. It was, is, and will be a sacrifice on Baphomet’s altar. She wants me to delve deep into the places that hurt, that are vulnerable and scary, and bring them to the fore. He thinks that my journey is important to others, not just because they care about me and want to know I’m okay, but many people read these words because it gives them comfort and insight into their own journey with chronic illness, disability, pain, and death. They need to know that their suffering matters, that their tiny prayers whispered from inside the MRI tube are being heard, that when they awake in the middle of the night because their pain is so bad they can’t move Someone is still there for them. It may not be Baphy, but it will be someone.

Baphomet also said that the sacrifice is only more blessed, bigger and better and more holy, when part of the sacrifice is continuing to post in the face of ridicule and humiliation.

This is a sacred place. This is a sacred place not because I say so, but because the Gods do. So this is the last time I will be addressing my fear of posting. This is a sacred place because the people who come here say it is so. If you wish to defile my sacred space, you act against the Gods and people who have worked to make it what it is today, and what it will be tomorrow.
SMIB.

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Breathing in, Breathing Out: Tonglen

April 18, 2012 at 1:32 pm (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health, Tuberculosis (Inactive)) (, , , , , , , , , , , , , )

There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.

First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?

Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?

So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.

I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.

Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.

And then I let go.

My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.

I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.

It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.

When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.

You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.

I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.

I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”

Kinda like this.

For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.

Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).

But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.

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Advanced Directives

February 8, 2012 at 4:24 pm (Death and Dying, When I Die) (, , , , , , , , )

A lot of people ask me about my advanced directives. These are legal documents that allow for someone else to make medical decisions for you in a situation where you are no longer capable of making them for yourself.

To state it publicly here so everyone knows, my medical proxy is Sara Laughlin, who I refer to as “Blue”. She is my sister. Ninja has her contact information, and I’m assuming if I’m ever in a situation where I can’t make my own medical decisions, Ninja will be around.

Ninja (whose real name is Mike Schlosser), is my secondary medical proxy. That means that if Blue is not available to decide and it needs to be made sooner than she can be reached, he is authorized to do so.

People ask me why my spouse is not my primary medical proxy. The short and true answer is, he chose not to. He feels that in a moment of grief, faced with losing his spouse, he would not be able to carry out my wishes as I have outlined them. My sister is sort of the “family medical proxy”, as she holds my mother’s proxy as well. She’s a rational, even-keeled person who knows me pretty damn well and knows what I would and would not want.

I am going to fill out new forms in the next few weeks. I am going to file them in the box with all my medical information. Currently, that box lives underneath the seat of my piano. If for any reason there is an emergency, that box should have all of my pertinent information in it, and all my legal paperwork including my will, my directives, and that sort of thing.

Whether or not you suffer from chronic illness, or think you’re going to die soon, it’s important for you to have Advanced Directives if you want any say in what happens to you and your stuff if you lose the ability to consent. If you go to this website:AARP’s Advanced Directives Site, it gives you a state by state choice, so you can download the paperwork necessary to create your documents, including what steps you need to take to make it legal. (I need to figure out who can witness mine who has no interest in having anything of mine after I die, because a witness can’t have any financial interest in your estate. So not one lunchbox, not one key. Any takers?)

Furthermore, if you have other nifty things like a checking account or stocks or a kickass vinyl collection, this Wall Street Journal article outlines other documents you should have in place so that you, and not the state (or your estranged family’s lawyers) dictates who gets what and how things are handled. This includes funeral preparations; for those of you Pagans who don’t want your family to mourn you in a Church, this may be important to you. (But keep in mind that funerals are more about comforting the living than uplifting the dead, so if the majority of the people you know are of a certain faith, it might be useful to let them mourn you in a familiar way. Luckily, most of my close friends and family are Pagan…)

Even though this is not a “When I Die” post, I’m going to categorize it as such anyway, since if someone is poking through my blog looking for my last wishes, knowing where my important documents are kept should be among those things. And yes, you too should tell more than just your spouse/parents/roommates where your medical proxy information is; you never know who will be alive and functional to help in times of crisis.

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Friends in need of help

November 28, 2011 at 2:41 pm (Uncategorized) (, )

you may remember that I have talked about my “medical advocates”: their names are Jamie and Jesse. They have been an unmeasurable help in managing my health care (driving me to doctors appointments, talking to doctors, taking notes, offering suggestions, making appointments, and general medical advice) and I truly believe that without them, I would not be in as good a position as I am.

 

Right now, Jamie is in the hospital; she is having her own “dying for a diagnosis” moment. Her original complaint was severe migraines; it has turned out that she has leaks in her CNS as well as a possible tumor. What was supposed to be a short hospital stay has become an indefinite one. She was determined to be home by Thanksgiving; they are not sure at this point if she will be home by Christmas.

 

This has come an incredibly inopportune time for Jamie and Jesse. They were in the middle of moving from one location to another, and their plan was to rely on their own manpower to clean out the old place and bring everything to a new place. At first, it seemed like it was perhaps possible for Jesse to attack this problem on her own; but between time spent with her partner in the hospital trying to calm her and make her feel comfortable, time spent trying to hold down her job, and other demands; the going has been much slower where than they had originally anticipated. There is a soft deadline of December 1; as that is when the old place will lose power. (There has been some discussion of extending that; but that is an expense that they may not be able to absorb)

 

I am asking my readers who live in the MD/VA/DC area to consider finding a few hours between now and December 1 to assist these people who have been instrumental in my health care. The three things that have been requested are A.) people who can lift heavy things; B.) people who can assist in throwing trash away and general organizing; and C.) people with vehicles that carry heavy things (pickup trucks SUVs etc.) who are willing to transport things from old place to place. They live in northern Maryland, not far from Ramblewood. If you are willing to assist them, drop me an e-mail and I will forward it to them so that you both can arrange good time to meet up.

 

I am also asking for readers who feel so moved to pray for Jamie and Jesse. Both of them could use a good turn, and not just in the immediate crisis. If you know Jamie personally, and are friends with her on Facebook, dropping her an encouraging comment on a daily basis goes a long way to make her feel as though her community has her back. If you know them (and you would  if you attend Beltane, FSG, Fires of Venus, or any Jeff Mach event), but you do not know how to reach them and wish to send them words of encouragement, you can e-mail messages to me at awesome.Del@Gmail.com and I will forward it to them.

 

Please feel free (and I actually encourage you to) to forward this message to people who may be able to help. If we can get people to help them with their move, I will consider it a debt that I owe, and I’m willing to pay back in barter or trade. This means if you are willing to give them some of your time, I will offer you readings, counseling, ritual planning, or whatever else you can think of that you might want from me. Of course,I will also appreciate those who do it as a goodwill offering from their heart.

 

Thank you for your indulgence; I know this is only tangentially related to what this blog is about; I hope you see this means a great deal to me that I am willing to reach out to my support system in hopes of strengthening Jamie and Jesse.

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Rant: How Not To Be Helpful

November 15, 2011 at 12:37 am (Living With Chronic Illness, Medical) (, , , )

So it’s late at night; not the best time for a well thought out blog entry. However, after several comments on my Facebook today from well-meaning people suggesting diagnoses and treatments, I feel like I need to put my feelings out there once and for all.

I understand that I’m medically interesting. Four years of various symptoms and different medical problems that don’t quite add up to one Big Diagnosis puzzles people. They feel compelled to help, but don’t really know or understand how to manifest their feelings in a positive and helpful manner. 98% of the people who read or hear about my medical problems are laymen; that is, they are not medical professionals and do not have any academic standing behind their conjecture. The only way they can relate to what they see here is to compare it to people they know or experiences that they personally have had.

So I get a lot of “my uncle had…” stories. More than I can count. Usually use these manifest when someone reads about one or two different symptoms, so the person gloms onto those symptoms and tries to force a diagnosis. Most of the time these people do not know the whole story, or know what doctors I’ve seen, or what diseases have already been ruled out. (Clue: it’s a big list) At this point, if you are a medical layman and you hear about some of what I’m going through and a diagnosis comes to mind; chances are very high I have already heard it. Chances are pretty good that it has already been explored by the medical professionals in my life.

I’ve listed these before, but I feel like this rant would be incomplete without them. So far, I have seen: four neurologists, a rheumatologist, a pulmonologist, a sleep study specialist, a cardiologist, two primary care physicians, two infectious disease doctors, one pain management specialist, two OB/GYN’s, an endocrinologist, two massage therapists, one chiropractor, one acupuncturist, two shamanic healers,one hematologist/oncologist, one gastroenterologist, a bariatric surgeon, a general surgeon, and probably other doctors that I can’t think of off the top of my head. Let’s call this the most comprehensive list I have made public so far. I post this list not to brag, but to illustrate that I have had quite a bit of  professionals take a whack at what is causing all of my symptoms (or in the case of some of the specialists, some of my symptoms). If they haven’t thought of it, chances are someone with no medical training isn’t going to think of it either.

I highly resent the idea that if I am not open to random suggestions for medical laymen, that somehow I am not taking my health care seriously. I believe I have the right to draw boundaries around random Internet interactions (and even in person interactions) when it comes to discussing my health situation. I understand that by making a lot of my health journey public, and by titling my blog Dying for a Diagnosis, that one might infer that I would welcome such comments. The truth is, I’m literally sick of them. It only serves to further frustrate me and complicate the medical process.

I have an actual team of medical advocates, most of which have some medical training, who go to doctors appointments with me; they take notes, ask questions on my behalf, keep track of information from Dr. to Dr., and help facilitate intra-Dr. communications. They are allowed to suggest diagnoses. This is because they know the whole story, have heard what other doctors have said, know what diagnoses have already been suggested (and discarded), and understand that even though they’re on my side, I’m so sick and tired of suggestions that there is a very specific way to bring one up that doesn’t immediately trigger my gag reflex.

I want to be clear: I understand that these suggestions, from a place of love and concern for my general health. I understand that they spring from a feeling of wanting to help and not knowing what to do. I have a post that I’m still composing in my mind, called Strengths and Weaknesses, that will help clarify how people who feel compelled to help can do so in a way that is conducive toward making me happy and making my life a better place to be. I’m a little busy with some teaching stuff right now, but I promise that post is on its way.

I know that the Facebook thing is beyond repair, but I want to remind readers of my blog that comments that suggest diagnoses will be summarily deleted; and if you bug me about it, I will ban you from commenting on my journal. I think what I have learned from today’s situation, is that I am no longer going to post medical updates to Facebook.

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