Blogging About Blogging

My sum­mer has been so full of den­tal drama and school stuff that I just haven’t had the moti­va­tion or energy to write.

Well, that’s not the whole story. To be per­fectly hon­est, I used to write all the time to relieve stress. When I first started blog­ging back in 2001, I loved it because I felt like I could rid myself of my bur­dens by shar­ing them with my read­ers. I still feel that shar­ing my suc­cesses and fail­ures with the world through my blog is pre­dom­i­nantly a good thing, but as time has passed and my opin­ions, life cir­cum­stances, and health has changed, I have found myself becom­ing more and more afraid of being judged neg­a­tively based on what I choose to blog about.

Part of me wor­ries about what peo­ple will think of me if I blog about cer­tain aspects of my life, but another part of me doesn’t really care.

Some of my favorite blog­gers seem to write what’s in their heart and hit Pub­lish with­out wor­ry­ing too much about what peo­ple might think. In real­ity, how­ever, I know that this isn’t entirely true. I know that other blog­gers write entire para­graphs or posts only to reword or delete them in an effort to pre­serve pri­vacy and to say some­thing, or not say some­thing, in just the right way.

I want to let my audi­ence in, but I still want to have secrets. Hav­ing secrets feels as vital to me as hav­ing air to breathe and water to drink.

I need some of my old 2001 blog­ging spirit back. I can’t not blog. Every time I try to stop, I crave it and go back to it, but I need to be excited about it again. I can be excited about it again. I AM excited about it again.

Most impor­tantly, I need to silence the voice inside of me that says, “Your life is too bor­ing to be worth blog­ging about. Nobody is inter­ested in what you have to say. And you’re a ter­ri­ble writer.” My life is what it is and, unfor­tu­nately, being chron­i­cally ill is pretty bor­ing busi­ness. I don’t really know how to change that. As for being a ter­ri­ble writer, I’m back in school, so maybe that will help. And maybe I’m not that terrible.

So, here’s where you come in, dear reader. How do you find things to blog about when you’re chron­i­cally ill, bed­bound or house­bound, and have a social life that con­sists of vis­its to the doc­tor and occa­sion­ally the gro­cery store and your brother’s school? Blog­ging about my health and school sta­tus is all fine and good, but I don’t want that to be the only thing that my blog is about. What do I do? Do I deserve to blog?

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The Bear

It starts out and I’m run­ning, run­ning, being pur­sued by some unknown and threat­en­ing thing. A per­son? An ani­mal? An entity? I can’t tell, but what­ever it is, it’s huge and it’s going to kill me — scoop me up and con­sume me in my liv­ing, breath­ing entirety.

But not just me. I’m still run­ning, hold­ing a lit­tle boy in my arms. He’s tiny and he’s sickly. He can’t eat and there’s some­thing wrong with him on the inside, yet pro­tect­ing him is infi­nitely more impor­tant than pre­serv­ing myself, like guard­ing some­thing truly price­less and irreplaceable.

Still run­ning, car­ry­ing a sickly lit­tle boy, toward a house that’s cov­ered in huge ici­cles that are block­ing our way in, still with this unknown mas­sive thing that’s com­ing up fast behind us. The ici­cles fall away some­how and I fran­ti­cally dive over them and into a house that’s lit up with warmth while hid­ing a sin­is­ter, unac­knowl­edged secret about the poi­son that made the child I’m pro­tect­ing so sick. I close and lock the door just in time to catch a glimpse of what was chas­ing us — an enor­mous brown bear.

Silence. Safety? I laughed at myself for lock­ing the door on a bear, imag­in­ing it try­ing to use the door­knob. The lit­tle boy began to laugh with me, reluctantly.

The win­dow over the kitchen sink exploded as the bear thrust its arm inside the house. But the window’s too small. The bear can’t get in that way. We could still be ok.

The bear burst through the door, oblit­er­at­ing it with its mas­sive body.

Run­ning again, des­per­ate to save this pre­cious child, I sud­denly real­ize that the bear is no longer behind us. It is stand­ing in the front yard, star­ing me down, chal­leng­ing me with its eyes. I put the child down and I take off fly­ing. Fly­ing and shriek­ing with all my might. No words, just pri­mal, pow­er­ful screams. With­out mass, trans­par­ent, I fly through the win­dow, scream­ing, through the yard, straight for the bear, still scream­ing, closer and closer, in the bear’s face, and then, pen­e­trat­ing the bear’s head and shoul­ders with my own ghostly form, I scream into its giant head and then…

Awake. Heart pound­ing out of con­trol. No bear. Dream-screams ring­ing in my ears.

To dream about being attacked by a bear, accord­ing to the almighty Inter­net, denotes over­whelm­ing obsta­cles or being involved in a threat­en­ing sit­u­a­tion, as well as going through a time of think­ing and intro­spec­tion. There is only one sit­u­a­tion in my life right now that fits this description.

I’ve been doing a lot of research, ask­ing a lot of ques­tions, and doing a lot of think­ing about this sit­u­a­tion. I thought I had come to the deci­sion that I would just suck it up and deal with it qui­etly. Some pain man­age­ment is bet­ter than none at all, and I cer­tainly don’t want to be dis­charged for stand­ing up for myself.

But now…now that I am sure I’m being mis­in­formed, either inten­tion­ally or oth­er­wise, I feel less able to just keep my mouth shut. And that was before I had that dream this morning.

My research has also shown me that I do have other options for pain man­age­ment. I do not have to put up with this non­sense. I just don’t know if or when to make other plans. And then there’s the ques­tion of whether or not to bring any­thing about my research up at my cur­rent doctor’s office and, if so, how to do it. Should I just suck it up and stick it out, or move on? Will they throw me out, dis­hon­or­ably, for speak­ing up? Or will they sim­ply advise me to seek care else­where because they can’t give me what I need, while acknowl­edg­ing my intel­li­gence for doing research?

Obsta­cles, threat­en­ing sit­u­a­tions, introspection…oh my!

My future hangs in the bal­ance, and I’m still no closer to know­ing what to do or how to han­dle it. The dream seems to be telling me to speak up (I would never, ever actu­ally scream at my doc­tor, rest assured), but speak­ing up could get me into trou­ble, pos­si­bly dis­charged and left with­out any help.

Think­ing. Oh yes, think­ing! And more think­ing. Every time I think I’ve decided how to han­dle this, I change my mind again and start think­ing about some other aspect of the sit­u­a­tion that I’ve been think­ing about repeat­edly since the appoint­ment. I’m sure I’ll be think­ing right up until my next appoint­ment, as well.

At the end of the dream, I was ter­ri­fied but exhil­a­rated and pow­er­ful, the child was safe, and I stood up to the bear…and won.

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From now on, I’ll just go to the vet!

I should know by now to never feel com­fort­able or secure. It always blows up in my face.

After 2–1/2 years of doing pretty well with my pain man­age­ment doc­tor, my last appoint­ment has left me feel­ing like my pain man­age­ment future is up in the air. I’ve fol­lowed the rules, been hon­est, and done what I’m sup­posed to do, but all those things don’t guar­an­tee that some­one won’t come along and upset the apple­cart. Some­one who has never met me, lived with me, taken the time to under­stand me could ruin my life.

The worst part about it is that I may be being lied to, and there’s not much I can do about it.

What should have been a rou­tine pain man­age­ment appoint­ment turned into a night­mare. I’m still a lit­tle con­vinced that it never really hap­pened. To make a long story short, the PA came out with, “We have a new policy…we’re no longer pre­scrib­ing break­through [short-acting, for sud­den increases in pain] med­ica­tion to any of our chronic pain patients.” As a patient who takes up to three doses of break­through med­ica­tion a day, this news left me floored and scared. She quickly negated this state­ment, say­ing that it wasn’t actu­ally their pol­icy, but had to do with infor­ma­tion from the FDA about break­through medication.

She claimed that the FDA released infor­ma­tion say­ing that break­through med­ica­tion stopped long-acting med­ica­tion from work­ing, and that the FDA would even­tu­ally ban break­through med­ica­tion entirely, “We should never have been pre­scrib­ing it in the first place.” All of the research I’ve been doing and the peo­ple I’ve been ask­ing all say the same thing: A long-acting med­ica­tion plus break­through med­ica­tion is still the gold stan­dard across the globe for ade­quate pain man­age­ment. In fact, the break­through med­ica­tion helps the long-acting med­ica­tion work bet­ter for a short time. Also, if the FDA was going to ban all break­through med­ica­tion, there would be riots in the streets…and I would have heard some­thing about it by now.

She also brought up a con­cern about the aceta­minophen (Tylenol) con­tained in break­through med­ica­tion. When I first started see­ing this doc­tor, I expressed that this was a con­cern of my mom’s (and mine, of course), and he called her a worry wart. In addi­tion, break­through med­ica­tion can be pre­scribed with­out acetaminophen.

So, my break­through med­ica­tion has been dras­ti­cally reduced, with the com­ment, “Try not to take any at all.” Great! There’s some nice guilt I absolutely do not need, thank you very much. At my June appoint­ment, they intend to stop the break­through med­ica­tion entirely, although, “If you absolutely need the break­through med­ica­tion, we can try to work with you.” Awe­some. That makes me feel super-secure.

But the stu­pid­est part of all? If you’re a Med­ic­aid patient, like I am, in order to increase your long-acting med­ica­tion dose, you must be tak­ing a cer­tain daily dosage of break­through med­ica­tion! Essen­tially, they’re tak­ing away my break­through med­ica­tion and, as far as I can tell, my abil­ity to increase the strength of my long-acting med­ica­tion. There may be a loop­hole that I don’t know about (I hope there’s a loop­hole that I don’t know about), but as far as I can see, I’m screwed.

All of the infor­ma­tion I’m find­ing con­tra­dicts what my doctor’s office is telling me: Break­through med­ica­tion is not of the Devil, and daily aceta­minophen is rel­a­tively safe over a life­time (and my dose is nowhere even remotely near the dan­ger zone). So, my doctor’s office has either been mis­in­formed, or they are lying to me.

And I was so dumb­founded that all I could say was, “Okay.” Just like my pre­vi­ous doc­tor, they are tak­ing away my med­ica­tion and try­ing to make me feel like it’s a good thing. It is not a good thing.

I doubt they’ve been mis­in­formed. If I’m being lied to, it could mean sev­eral things, all of them bad. It could mean that the doc­tor has got­ten into some trou­ble or just become hes­i­tant about pre­scrib­ing, the prac­tice could even­tu­ally get rid of all chronic pain patients, or it could mean that I did do some­thing wrong, even though the PA said this was not the case (and I tend to believe her, because I know I never did any­thing expressly for­bid­den by my contract).

The sick part of this whole sit­u­a­tion is that if I bring this (any of this) to their atten­tion, I could still see myself dis­missed to an unaided detox. With reg­u­lar doc­tors, one must use a del­i­cate touch, but with most pain doc­tors, it is best to keep one’s mouth shut or pre­pare to suf­fer the consequences.

My options are to stay and deal with it and hope things change, find another place to go, or bring their inac­cu­ra­cies to their atten­tion and take a mas­sive risk with my future. If I had another doc­tor to fall back on, I’d bring up their errors (or lies?), poten­tial dis­missal be damned. I don’t have another doc­tor to fall back on, and I know when a bat­tle is not worth fight­ing because the risk of los­ing is far too great. I would rather have some pain relief than none at all.

Is it strange that I have an over­all feel­ing of calm about this? I have occa­sional feel­ings of blind panic, fear, betrayal, and the need to take imme­di­ate action (but not really know­ing what that action even is), but I feel calm. Deep inside, I feel like this will all work out, even to the point where I feel as if some­thing is in the works already, and the feel­ing is for­eign to me because I never, ever feel like this about anything.

I also feel like I’m going to end up some­where else. Where? I have no idea. I cer­tainly haven’t taken any action to find some­where else yet and, as far as I know, no other place exists for me.

If there is another place for me, it is a place filled with com­pas­sion­ate peo­ple who don’t make patients feel guilty about tak­ing med­ica­tion, any med­ica­tion, and who don’t pull the rug out from under their patients.

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Bullies. Or assholes. Yeah, definitely assholes.

Just when I think I’ve got­ten too old for some­thing, that some­thing comes back and slaps me right in the mouth. I’m talk­ing, of course, about bullies.

Grow­ing up with an obvi­ous phys­i­cal dis­abil­ity, as well as attend­ing school with an enor­mous amount of “nor­mal” class­mates, pro­vided me with tons of expe­ri­ence deal­ing with bul­lies. A bully will say or do any­thing to get a reac­tion out of his tar­get, and any­thing the tar­get says or does winds up back­fir­ing hor­ri­bly. Try­ing to defend one­self is futile. Even walk­ing away or ask­ing some­one else for help is largely useless.

When I was in school, most of the author­ity fig­ures who might have been able to make a dif­fer­ence pre­ferred instead to either ignore the bul­ly­ing or blame the bul­ly­ing on me (“If you didn’t dress/look/act like that, you wouldn’t be get­ting bul­lied.”). When­ever I was on the receiv­ing end of bul­ly­ing, which was often, I would go into myself, let­ting my sur­round­ings fall away. I reas­sured myself that, once I was an adult, I wouldn’t have to deal with bul­ly­ing any­more. For the most part, I was right…until this past Friday.

The phone rang as I was set­tling down to go to sleep. I let the call go to voice­mail, but I checked the caller ID just to see if I rec­og­nized who it was and if it was impor­tant. The caller ID said, “TENNESSEE CALL” and, because I’m expect­ing a call about get­ting a hos­pi­tal bed for home, I decided to lis­ten to the voice­mail right away. To my sur­prise and annoy­ance, it was a mes­sage from the med­ical sup­ply com­pany that I got my TENS unit from way back in July. The mes­sage indi­cated that Blue­Care, my for­mer insur­ance com­pany, had denied the TENS unit because I was not cov­ered under them at the time the claim was made. The man also stated that I needed to call him back imme­di­ately to make arrange­ments to either pay for the unit or return it. He was quite adamant about me get­ting back to him RIGHT AWAY.

I got the TENS unit right around the time I had to switch from Blue­Care to Ameri­choice, so it was obvi­ous to me that the prob­lem was sim­ply that the med­ical sup­ply com­pany did not have my cur­rent, cor­rect insur­ance infor­ma­tion. This still baf­fles me. I have no idea how they could have got­ten my old infor­ma­tion when every one of my doc­tors had the new infor­ma­tion. Black hole? Sure, why not. Let’s go with that. I called the man back, think­ing that all I had to do was give him my cur­rent insur­ance infor­ma­tion and every­thing would be fine. *laughs maniacally*

He seemed nice enough when we first started talk­ing. I explained that I knew I wasn’t insured under Blue­Care at the time and that the TENS unit should never have been billed to Blue­Care. I told him that I had no idea how they got the wrong insur­ance infor­ma­tion when the pre­scrib­ing doc­tor had the right infor­ma­tion. I offered to give him my Ameri­choice infor­ma­tion, which is where they should have billed the unit in the first place. This is where things turned nasty.

By this point in the story, you can tell that this sit­u­a­tion is not my fault, right? Good. That’s not how the man on the phone, or the billing lady he trans­ferred me to, saw it.

He informed me that too much time had gone by since get­ting the unit to bill it to Ameri­choice. He insisted that he tried to call me numer­ous times in the past to resolve this prob­lem. Well, either he was lying or I was on another planet when he called, because this was the first phone call I ever received from him. He also stated that they attempted to bill Blue­Care mul­ti­ple times, but the claim was denied every time because I was no longer cov­ered under them. So, instead of try­ing to fix the sit­u­a­tion after the first denial, they con­tin­ued to bill Blue­Care over and over again. What did they think would hap­pen? I won­der if he real­izes that to take the same action over and over again with the expec­ta­tion of a dif­fer­ent result is the very def­i­n­i­tion of insanity.

After going around in cir­cles with him as well as their billing lady, he offered to sell me the unit for $75. I can’t afford that right now, and I shouldn’t have to pay for it because I was never unin­sured; they just had the wrong insur­ance infor­ma­tion (which is not my fault). As soon as I told him I would not be able to afford the unit, he hastily asked me how soon I could bring it back to them in John­son City. My answer of Decem­ber 3rd was unac­cept­able, “That’s…really, REALLY not good.” He asked why I couldn’t get in any sooner, and I explained that I was not well enough to travel that much.

This is when he started to get loud. In between my try­ing to tell him that I would con­tact Ameri­choice about this sit­u­a­tion, he raised his voice and talked over me, telling me to just ship the unit back to him, or he’d get some­one to come to my home to get it back, “WE REALLY NEED THE UNIT BACK IMMEDIATELY!”

I flailed, exas­per­at­edly telling him how this wasn’t my fault and I had no idea how or why they didn’t get the right insur­ance infor­ma­tion so I shouldn’t have to pay or have my unit taken away and this is ridicu­lous and I’m broke so I can’t afford to pay $75 or even really to ship it back and why won’t you under­stand or just leave me alone and I was just about to go to sleep and STOP TALKING OVER ME! and I have an autism spec­trum dis­or­der so the phone really freaks me out and I’m going to call Ameri­choice and tell on you! All the while, he’s shout­ing over me, “JUST PUT THE UNIT IN THE MAIL AND SEND IT BACK TO US. OR I’LL SEE IF I HAVE ANYONE COMING NEAR WHERE YOU LIVE SO THEY CAN PICK IT UP FROM YOU AT HOME. WE NEED TO GET THIS TAKEN CARE OF AS SOON AS POSSIBLE!”

I ended the con­ver­sa­tion, telling him that I would con­tact Ameri­choice and have this straight­ened out imme­di­ately. He said, mildly threat­en­ingly and with the hint of a smirk, “Oh, I hope you do, sweetie.”

I called Ameri­choice and spoke with a very polite woman who was appalled by how I was treated. It turns out that the med­ical sup­ply com­pany was actu­ally breach­ing the terms of their con­tract by con­tact­ing me per­son­ally. She told me not to return or pay for the unit; since I was insured at the time, I will not have to pay for it or return it. She assured me that this whole thing wasn’t my fault. She thought it was not only stu­pid, but also sus­pi­cious that they would keep try­ing to bill Blue­Care repeat­edly with­out check­ing to see what was wrong after fail­ing the first time. She said that it sounded as if I was being bul­lied, and she was going to put a stop to it immediately.

The thing that scared me the most about this whole fiasco was not the threat of hav­ing my TENS unit taken away, but how eas­ily the man at the med­ical sup­ply com­pany got me to crum­ble, believ­ing that this was all my fault. Part of it was his con­tin­u­ously insist­ing, “We’re only try­ing to help you.” Yeah, right! If he ever calls me again or, God for­bid, has some­one show up at my house, I think I’m going to have to “help” him.

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Alive

Behold! I am still alive.

I have not been feel­ing well for a while, so I have had to use most of my “feel­ing ok” time to keep up with a class I’m tak­ing online.

My June appoint­ment did not go very well. I described my episodes and, big sur­prise, he had no idea where to even begin. We have now deter­mined that the doc­tors in this area are not equipped to han­dle me, but we don’t have nearly enough money to travel to go see spe­cial­ists, and I pre­dict that we may never be able to afford it.

I con­tacted sev­eral spe­cial­ists in the hope of work­ing with some­one long-distance (my doc­tor encour­aged me to do so). I have only heard back from one so far. He said that my symp­toms were far more severe and exten­sive than what is usu­ally seen with EDS, and there is really no way that any­one could help me long-distance. If I want help, my only option is to travel out-of-state to see spe­cial­ists. How do we do that when we don’t have the money for a car repair, which is keep­ing me from even see­ing my local doc­tor an hour away?

Part of the rea­son I haven’t wanted to write here is because I have noth­ing good to say. It’s all, “I’m poor! I’m sick! Life sucks!” Nobody likes a com­plainer, and I’m usu­ally the first per­son to crack a joke in a bad sit­u­a­tion, or try to see the good side of things. I’m feel­ing self-conscious about being hon­est with­out being too negative.

So, it hasn’t been easy, and I can’t fore­see if or when it will be easy, but I still have hope that help is out there for me and good things are on the way.

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The Latest Episode

No, I haven’t for­got­ten about Rx for Dis­tress. It’s just that stuff has been hap­pen­ing and I’ve been feel­ing and doing worse than usual.

Way back in Feb­ru­ary, a few days after my birth­day, I had this episode. The episode didn’t last very long, but it made me feel so hor­ri­ble phys­i­cally that I still lack the abil­ity to spell the words to describe exactly how I felt. I was shak­ing vio­lently (not like a seizure; more like shak­ing chills), unable to reg­u­late my body tem­per­a­ture, felt ice-cold inter­nally but was burn­ing to the touch, had an ele­vated heart rate that would go through the roof if I so much as lifted my head off of the pil­low, and spent sev­eral hours puk­ing despite my anti-puke med­ica­tion. I made the mis­take of try­ing to walk to the bath­room dur­ing the episode. This resulted in my head feel­ing like it might actu­ally explode and my heart rate going so high that I couldn’t feel it to cal­cu­late it. I had to crawl back to my bed­room so I wouldn’t pass out.

Thanks so much for the won­der­ful belated birth­day present, body. It’s the thought that counts.

I didn’t men­tion this episode dur­ing my March doctor’s appoint­ment because I fig­ured it was just a one-time thing.

Unfor­tu­nately, I was wrong. I had another one at the end of May, about 10 days before my every-three-months appoint­ment with my pain guy. This time, I called mom down­stairs to help me; I just couldn’t risk get­ting up. I might not have been phys­i­cally able to get up.

I didn’t bounce back from that episode like I did from the one in Feb­ru­ary. For about a week, I couldn’t sit up for more than 15–30 min­utes with­out my heart rate going up and my body tem­per­a­ture going crazy.

I’ve had two more episodes: One after my appoint­ment with my pain guy and another after going to the ani­mal shel­ter to vol­un­teer and play with the kit­tens I had to put off see­ing because my crappy body crapped out on me.

The episodes seem to be related to exer­tion – they come on after I’ve been out and about. I still have to limit how long I sit up to keep the symp­toms from com­ing back.

I am truly bed­bound now, spend­ing most of my time in my bed or on the couch. I have had to miss fam­ily func­tions that I really wanted to go to. When mom and Isa­iah get home, they down­play their enjoy­ment, telling me that I really didn’t miss much at all. That’s beside the point; I should be able to go. And it’s not just about me, it’s about Isa­iah. I hate what my ill­ness is doing to his mem­o­ries of me. I never could have imag­ined my life would turn out like this.

I try to be both pos­i­tive and real­is­tic, but I’m find­ing it harder and harder to be pos­i­tive. All of my friends are far away geo­graph­i­cally, so I’ve been feel­ing very alone. I don’t know how I’d make it if I didn’t have the Internet.

I have an appoint­ment with my fam­ily doc­tor on the 24th, which will most likely result in yet another refer­ral to a spe­cial­ist. I’m not hope­ful that any­one around here will be able to help me. There is a lit­tle voice inside of me that says there is some­one out there who can help me, and that until we find each other, I just have to keep hang­ing on.

Just keep hang­ing on.

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EDS: How You Can Help">EDS: How You Can Help

Ehlers-Danlos syn­drome threat­ens the lifestyles and lives of many peo­ple all over the world, some with­out even know­ing they have it. In fact, the vas­cu­lar form of EDS is often diag­nosed upon autopsy.

EDS Net­work C.A.R.E.S. and EDS Today have teamed up to enter Chase Com­mu­nity Giving’s con­test for a chance to win $250k. They are in the #1 spot as I type, but we still need all the help we can get.

Please vote for EDS Today. It takes less than a minute of your time and costs you nothing.

EDSers like myself expe­ri­ence dis­lo­ca­tions of mul­ti­ple joints on a daily basis, relent­less and excru­ci­at­ing pain, dete­ri­o­rat­ing phys­i­cal con­di­tion, and the con­stant threat of death by organ or blood ves­sel rup­ture, as well as many sec­ondary med­ical problems.

And that’s just the tip of the iceberg.

EDS research is seri­ously under­funded. The money from this con­test will go toward fund­ing EDS research. More EDS research increases the pos­si­bil­ity of find­ing a cure. I have hope that a cure will be found in my lifetime.

So, please, click that link and vote for EDS Today. Post the link to your Face­book wall, tweet it, blog about it, pass it along to every­one you know. Please help us to help them find a cure.

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