Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: November 2008

I went to a pain management guy, and he put my one Ultram ER 200mg (whoot extended release super tylenol) and then Ultracet (ooooh, more super tylenol, with… wait for it…. TYLENOL). What the hell is that going to fix. I understand that it works for some, but for other, like me… it doesn’t. Then I am on Cymbalta (from my psychiatrist), which I really do need because I do suffer from depression and severe anxiety since I was a child, but it needs to be raised (a whole other story, not bad, just a different story). Then Pain Dr decided to through in Lyrica, which practically made me blind. I called them, they say stop and I go back and decide to put me on Neurontin. So… what do I do for the acute pain??? Halloween weekend I displaced my collarbone, the ER didn’t want to try to manipulate it for fear of making it worse. Last weekend (still feeling the effects) I subluxed my right shoulder and now my muscle, ligaments/tendons, and soft tissues are all impinged. I didn’t go to the ER, I was just there… and they wouldn’t have been able to do anything anyway. I started with a new PT yesterday and he said the my shoulder is rolled too far forward causing the impingements. Fantastic. The my spin is twisted, which I know, and is causing constant vertabral sprains. OH yea, and my L5 vertebra is stuck out of place causing most of the twisting, pelvic issues, a lot of nerve stuff, etc etc. My ribs are shifting… so much fun.

Now, at 10pm at night, after trying multiple things.  I can NOT get comfortable no matter what I try to do. I’ve tried multiple positions, bracing, pain killers (ultracet, heh, glorified tylenol if you ask me), valium, lying on the floor, sitting up straight, a few of the PT exercises… I am so unbelievably uncomfortable. The meds I am on aren’t doing a damn thing. I’m on Cymbalta 60mg, Neurontin 300mg, ultram er 200mg, valium 10mg prn, and ultracet 37.5/325mg (2pills 4x daily). What’s next? Increasing the drugs, because they don’t want to go to opiates? 


Ok, So I have this problem…  I’m a pack rat when it comes to yarn.  I see pretty, soft, funky, etc yarn, I HAVE TO HAVE IT!!!!  It’s gotten bad.  I’ve started to organize my stash and it really put into perspective how much yarn I actually have.  So, after going through about 3 bags and 1 giant tupperware tote I’ve nearly filled up the 2 hanging shelf things I bought for the closet and I still have another big tupperware tote, a basket, and a few more bags to go.  Sigh…  I need to buy a few more of those hanging things.  Then…  no more buying yarn.  I am following Presents Knits method of destashing and not buying until your stash is gone. It’s kind of like a 12 step program.  Seriously read her blog.  If you have the same impulse yarn buying issues I do, this will help!

….and I have a mild form of trichotillomania (complusive hair pulling hair) and a skin picker. So ya, I’m sick of everything. All my life it’s been one thing or another. Medical crap aside, I’ve never had a chance to deal with just one thing at a time. All over lapping. No idea what the crap is wrong with me mentally. Sure, depression, anxiety, social phobia…. etc etc etc. I don’t really care what the label is… just that the treatment is right. Part of me wants the label, give me a validation, a sense that I’m “not just crazy.” I sure feel crazy. I’ve locked myself in the bathroom nearly hyperventilating and crying. BF was upstairs in the shower and I didnt want to chance him seeing me like that. I came home from my psych appts (Pdoc and Tdoc) still crying. Pdoc thinks I’m being over medicated which can be causing some of the “crazy” feelings. She also doesn’t like that I am on but Ultram ER and Ultracet. One or the other would be fine, but bother bothers her. My blood pressure has been all over the place ranging from 73/40 to 105/80. She said that if the systolic goes under 90 I should go to the ER ASAP. I shouldn’t be driving, yada. That was kind of a blow. Tdoc and I are still trying to figure out the best way to help me. So, time to start actually “talking.” I need to get my impulsivity under control. Spending 3000 in about a month and a half on random crap is NOT healthy. I have no control over my body, I can’t keep it together, I can’t go under a certain weight limit, I’ve stopped cutting, so now I’m randomly spending. All of which I’ve told my therapist. Now just have to figure things out…. What things. I have no Frickin’ clue!!!!! There’s so much sh*t in my head and I can’t figure it out. After I see my primary and find out the results of the Holter Moniter; my Pdoc has no problem increasing my Cymbalta as long as things with my heart are ok. What really gets to me sometimes is that sure, I’m on 200mg Ultram ER in the morning, then 75mg/650mg of Ultracet every 4 hrs. Sure that may help the general achiness, but what about the acute pain of a dislocation or subluxation. I’ve had two really bad ones in a week and a half. Still recovering from one. I can’t go to the ER each time because of the EDS they won’t try to manipulate for fear of throwing something else out of balance, take a few exrays, and give me extra stregth motrin (which I can’t take anyway). I guess this is more stuff to talk to Primary about, and have her call the Pain Dr about what to do. When I called them, the nurse said she couldn’t do anything the dr wasn’t there and to make a follow up. Well, the follow up isn’t until dec 10th. Fantablous. My head is getting spinny and I’m afraid of just babbling about all the same stuff again, so I’m goign to go. I just need to let some of this out before I explode.

I know, it’s been forever since I’ve posted anything of substance.  A dear friend of mine actually told me to write more.  It will help me deal with this shit.  Or at least get it out of my head for a while.  Otherwise, I become this pessimistic, miserable, bitch.  No wonder I don’t have friends who “have no time” to hang out.  Well…  I’m working on it.  I’m bitter.  I’ll admit it.  I’m very bitter.  This was not in my plans.  Being disabled at 26, having a hard time walking, having joints dislocate or sublux with every movement, and the chronic pain.  Not in my plans.  I don’t know whose plans those things would be in, but certainly not in mine.  I had dreams, aspirations, I was working towards applying to Brown University’s Neuroscience program before this hit me really hard.  I was even considering taking the MCATs.  I can’t be a dr when I need my own CPA with me at all times for when I injure myself examining a patient.  I’m trying to get back into art, try to channel all this bitterness and make something good with it.  Trying to find the good in whatever I can.  It’s hard, but not impossible.

I’m seeing a new pain clinic, and they are FANTASTIC.  If any of you are in the Providence, RI or southern MA area, I highly recommend this place.  They are very compassionate and will try everything they can.  Unfortunately, I am in the stages of trying to find the right combo of meds to help keep the pain tolerable and keep me sane at the same time.  I was on Lyrica for about a week and started having horrible visual side effects.  Go off that.  Now we are trying Neurontin as well as Cymbalta, Ultram ER, and Ultracet.  Then the topicals, Volteran Gel, and Lidoderm Patches.  I want to stay away from opiates as long as possible.  So if that means months of trial and error of different types of med treatment, then so be it.  I’m getting in contact with a dr that does something called Prolotherapy.  It sounds super scary, some people have had good results, some hasn’t helped.  What they do is take a syringe filled with dextrose and inject it into the problem tendon/ligament to irritate it so it will contract and form scar tissue.  The idea is that enough scar tissue will form to keep the joint from falling out of place.  Like I said…. scary.  I was told he also does other things, so I am going to call, and talk to him and see if I would be a candidate.
The Pain Dr also put me in contact with a local woman with EDS and we’ve been talking a lot.  She is amazing, so caring, and willing to help anyway she can.  She suggested a bunch of places to go to.  Convinced me to contact the Chiari Institute (have to mail out that paperwork).  It’s so nice to have someone close by to be able to talk to.  

Being able to run, for one.  I actually have dreams of taking a jog around the city, I’m not even kidding.  Actual dreams.  Other things, being able to take a leisurely walk with my expensive camera and working on photography, riding my bike, etc etc etc.  I’m learning to do new things.  My OT is “re-teaching” me how to knit with my myriad of splints on so that I don’t hurt myself.  My aunt and mom are helping me learn to bead.  My mom has almost no use of her right arm due to a brain/neck/shoulder injury, so if she can figure out a way, I sure as hell can.  So I’m learning new things to do.  One of the main things  I miss is musical theater and singing.  I can actually sing and am decent at it, but with the EDS My ribs will do something funky and I choke in the middle of a phrase….  not the most melodic.  haha…  anyway, so in tribute here’s is some ear and eye (Antonio Banderas) candy  for your enjoyment.