nonnasnonsense

nonnas nonsense

wednesday woes

Posted by nonnasnonsense on June 10, 2009

hi everybody! yes, it’s actually me and i’m actually posting something. i know, i know, don’t die from the shock. besides the 50 million other excuses i could give for not posting, i have been kinda waiting for my social security hearing (monday) and my surgery consultation (tuesday) to pass so i could update everybody about them. because, let’s face it, there isn’t much else going on in my life right now to talk about other than my health (or lack there of). so, that being said….here is my update:

i still don’t know shit! my hearing went well enough, but the judge decided that since all of my medical care has been through the VA (heaven forbid he trust the GOVERNMENT provided doctors’ opinions) he wants me to go to a doctor of his choice. oh, and a shrink of his choice too. he admitted that he didn’t know anything about Ehlers-Danlos Syndrome and would have to research that and then see what these other dr.s report. my lawyer actually seemed a little more positive after the hearing which is an improvement.

oh, wait. y’all don’t know about that new diagnosis do you?? man, i’m such a slacker. ok, so back in mid-may i went to the rheumatologist at the nashville VA. after listening to my symptoms and my theories (what?? a dr. actually LISTENED to his patient?!!? wtF?) and after he checked several things he came up with a diagnosis. AND it wasn’t “quit smoking and you’ll miraculously be cured” like his fellow rheumatologist told me a few years ago. i have Ehlers-Danlos Syndrome (EDS from now on, cuz, you guessed it, i’m lazy like that 🙂 EDS is a genetic disorder that effects my tendons and ligaments so they don’t support my joints which means my muscles have to go into overdrive and stay tensed all the time to compensate. hmmm, sounds a lot like what i’ve been trying to tell my primary care dr. for the last 5+ years. go figure. oh, here is a great website if you’re interested in reading more about EDS. i don’t/won’t know for sure which type i have because you need genetic testing for that and the VA is too cheap to spring for that. the dr. thinks i have type I, II, or III and he is leaning towards III. i’m a little worried that i might have the vascular type which is (of course) the most dangerous and has an expected lifespan of around 48 y/o. i have several of the symptoms of this one, but not any of the major criteria. so, unless i actually get approved for disability and can get medicare/medicaid (whatever) to pay for genetic testing i guess i will never know for sure which type i have. c’est la vie.

on to the surgery clinic yesterday…after waiting for TWO and a half HOURS to be seen, they finally call me in. i go over all the ultrasound and mri findings with the little student-wanna-be-dr. then the real dr. comes in and i get to listen to the student repeat everything to him. then I get to repeat everything to him. *sigh* it would be sooo nice to be able to walk into the dr.’s office and have HIM read my freaking file. you know like maybe during the 2 1/2 freaking hour wait. it gets really old having to repeat this stuff over and over again. anyways, enough ranting about that cuz there are way more fun things to rant about coming up.

so this dr. decides that my ovarian cyst is not an ovarian cyst but some type of mass/tumor/they have no idea what that is associated more with my colon (that’s your poop chute for those not in the know 🙂 than my ovary. now, he wants me to make an appt to talk to this dr. growl (i swear that’s what he called her!) who i believe is an oncologist type surgeon or something. i decided that enough was enough. this would have meant another wait for another appt and then still another wait for a surgery to be scheduled. i, as nicely as my frayed nerves would allow, explained that i have put my life on hold ( ie: no sex, no horseback riding, no anything strenuous, for the last 4 MONTHS) and i was done with this. my ca125 test was negative, which means in all likelihood, whatever this cyst/mass/tumor/B.S is, it’s not cancerous, so just freaking schedule an appointment and take it out already!! he decided that maybe he could page this dr. growl and see if she was available to come talk to me. AMAZING!! you mean that was an option?? then why didn’t you just do that instead of making me beg/plead/demand it??

dr. grau (ok, damnit i guess he wasn’t calling her growl) comes in and we get to go through the whole spiel again. *double sigh* she decides that she would really like to have a look at my colon. oh joy! at least she is nice and says she can use the flexible scope instead of the rigid one, because the rigid one is, well, rigid and it hurts…more. i informed her at this point i didn’t really care what she stuck up where, but i refuse to even try to drink that nasty salt water tasting stuff to “clear a path” for her flexible-so not quite as painful as the rigid-scope. she says she thinks an enema will do the job. double joy.

now, as i once again explain that i’m gonna go postal and kill somebody if they don’t get this done with soon so i can have some sex again (yeah, i said that. you try going this long and not seeing an end in sight. i’m still looking at 4-6 weeks recovery time after the stupid surgery ya know.) she tells me that just in case it is ovarian cancer that she would really like to have a gynecologist there during the surgery too. she makes some calls. are you ready for this one? murfreesboro VA only does gyn type open surgeries so there is no general surgeon there on stand-by. this is why i’m at the nashville VA in the first place. well, it seems that the nashville VA has general surgeons with NO gyn’s! she makes more calls. there are NO gyn’s with privileges to operate there. now why my gyn in murf. can’t come to nash. and be there during the surgery i don’t know. OH, and she also wants an oncologist there too. so now, i guess i’m gonna have to wait until the VA agrees to ship me out on fee basis to a regular hospital AND find a gyn, general surgeon, and an oncologist to all be there at the same time. i guess i might have surgery by oh, maybe the end of the year….if i’m lucky. 

on other news fronts: i caught a humongous snapper turtle while fishing for catfish in the in-law’s pond and then i almost caught a huuuugggge catfish. well, if a) we had remembered to put the net in the boat and b) it didn’t take hubby so long to snap a pic that the hook ripped outta the lip of the catfish, i would have landed that sucker! it was funny, i got it up to the boat and was trying to lift it up out of the water and it was so heavy i could only get it’s head up. i looked down into this giant, gaping, maw and said “what the heck do i do with that??” it’s mouth was so big i could have easily stuck my arm down in there and never touched the sides of it. next time, i’ll have my net ready and instruct hubby to video it on his cell 🙂 here’s my snapper pic and i must say, it was much bigger than this pic looks! i would say the shell was at least a good foot across:

snapper

the g-kid is doing good, although he’s figuring out how to lie to try to avoid trouble. he really sucks at it though lol. he’ll sit there and think and umm, and wellll, and screw his face up like he’s trying to remember something lol. total give-a-way. oh, and he has started making up for missing out on the terrible two temper tamtrums that he skipped at that age. homey (nonna) don’t play that though. he starts the whining, crying stuff and i just ship him off to his room. i’m such a hard ass his mom has started threatening him with “i’m gonna call nonna and tell her how ugly you’re acting”. hey, if it works, i’ll play the mean cop. better than having a spoiled brat for a g-kid in my book. oh, and he went fishing the other day with his mom and her bf. he caught a nice sized blue gill and was holding it up for his mom to take a pic until it started thrashing around. he went from smiles to this, appropriately named “fish fright” lol:

fish fright

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9 Responses to “wednesday woes”

  1. Rock Chef said

    Wow, that is a real pain about the hospital messing around like that! And no sex to top it all off!

    That turtle does look big compared with the feet in the pic!

    “Homey don’t play that!” I used to love that show! Can’t remember what it was called now, but it had some great stuff on it.

    yeah and unfortunately patience is not one of my virtues. those were my feet! lol that thing scared me to death. i tried to be nice and get the hook out of its tongue and it tried to eat my pliers! i don’t remember which show that was from either. maybe In Living Color??

  2. It really is you!!!!! So glad to see you back! I’m sorry to hear that you are still having health problems and fighting the system. I hope you get everything straightened out soon and feel better to boot.

    yeah it really is me! dang it! i just realized i shoulda had some of yall guest posting to fill in for my lazy self! sheesh what a goof i am! i hope they get it taken care of soon too. i’m ready for summer time fun not laying in bed convelescing!

  3. seashore said

    Sorry that there is yet more waiting on your horizon. Love the pic of fish fright.

    i know. that pic is the best. oh, and he acted that way about the worms, the leaf jamie caught, falling down and getting his knees dirty, the bugs flying around. what can i say, the kid is a chicken at this age.

  4. momma said

    Thank you, thank you, thank you..I’m so glad you are back..I love the picture of James with the fish..We are going to get to the bottom of this health issue. Love, momma

    you’re welcome, you’re welcome, you’re welcome. but still don’t be expecting me to write everyday. remember, think magazine not newspaper 🙂

  5. achelois said

    I stumbled across your blog from the UK. I have EDS Hypermobility Type (formerly K/A type III) as does my daughter. I understand the frustration that years of misdiagnosis and labelling can cause. I wish you every success in your fight with social security. Although I will say the systems are so different in the US to UK that its hard to for me to understand the system. Over here only a few specialists are familiar with the condition, the best being Professor Rodney Grahame University College Hospital London. I hope that appointmented doctor has some clue for your sake. I must say my opinion of a Judge who has not even bothered to take a few moments to look the condition up to appraise himself a little of the condition is poor! I will put your blog in my google reader and look forward to the next edition. Seems like you need the gyne stuff sorted out sooner than 4 months, I know I am a relative stranger but my heart goes out to you. Stay Strong and kindest regards.

    thanks so much for your comments. do you have a blog or website? i must say in the judge’s defense, since the diagnosis was right after my lawyer had updated my medical records to submit, he wasn’t informed about the EDS until the day of the hearing. i too am hoping that the dr. they send me to at least is informed about EDS but if not, i am planning on bringing some info with me. well, if i can actually remember to bring it with me that is. i had printed out and underlined all of the symptoms and complications that pertain to me for the judge and completely spaced and forgot to take it with me to the hearing. i would love to hear how you are handling the symptoms and what has worked for you. my biggest problems right now are severly tight and painful muscles in my neck/shoulder area and my hips. thanks again for commenting and i hope to hear more from you soon 🙂

  6. de-I said

    I was so glad that you were back on line again. Then I read about all the pain and trauma and I remembered again how lucky we are when we have our health. I really hope that they can figure out something that will actually help.

    That’s a freakin’ big turtle! We don’t see any thing that big in the desert…unless its a tarantula 🙂

    lol i don’t want to see a spider that big…ever! lol thanks for the good wishes and i’m pretty sure that these latest dr.s i met with understand my impatience and seem to want to get this issue resolved quickly. i called the scheduling gods/demons to see if i had an appointment yet and they said that the dr. had put a “within less than 2 weeks” notation on the g.i. procedure. now whether or not the g.i. ppl in murfreesboro listen to those instructions….well..we’ll just have to see 🙂

  7. Norene said

    OMG!!! I almost fell outta my chair at that picture of James!!!! Wheewwww that was GREAT!!! Sis, I didnt know ALL of that about the Dr stuff. You didnt fill me in on all of that, but I’m optimistic that you/they are gonna get it figured out and get your disability too!! Love you with all my heart! Oh and how cool about the person who has EDS from the UK finding you!!

    isn’t that pic just the funniest? i can never remember who i tell what to and it’s boring enough having to listen to it once so i’ve been trying not to tell it over and over. guess you must of got missed on the latest, sorry 🙂
    i know i thought the UK thing was cool too. i’m hoping that she(?) replies to my reply 🙂

  8. territerri said

    ‘Bout time you got your butt back on the blog! 😉 We missed you! So sorry to hear about the medical troubles and hope you don’t have to wait half a year to get things figured out.

    i missed you too! 😉 oh…still waiting too 😦

  9. Karen said

    Have they figured things out yet? It sucks that while they pussy foot around you are in pain and deprived! I am glad they have a diagnosis for you, as I told you before, just wish it were something with a cure. Never know though, just because there is not one at the moment does not mean that there will never be one. Miss chit chatting with you on skype, hopefully you feel better and have more time to play with the sibling and myself =).

    well, i went to see the cancer surgeon the other day. finally figured out why they sent me to her too. it’s because she can do all kinds of surgeries so it won’t really matter what she finds, she should be able to take care of it. she agrees with me and thinks it’s just an ovarian cyst and that my ovary has just dropped down between my bladder and colon. that’s very common after a hysterectomy unless they suture the ovary in place. can’t really use being too busy as an excuse for not chatting. it’s more like too many good books to read 🙂

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