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just about at my wits end. very depressed, very deep hole these last few weeks, just can't get out. finally had to tell hubby what is really happening, he was angry at me for pushing to hard and getting goofed up.

have had a headach for 48 days :D as well as neck and middle back pain. very dizzy and weak, still trying to swim every day, but i think i will have to give up and stop for a few days. lightheaded is a major understatement, not quite hitting the floor but ssooo close. near constant naseau too, my normal drug of choice, compazine, isn't helping. trying some new meds over last few days, not really helping, but i have to try. will be giving in to internal med doc (i like her) and see if she can help. even considering trip to er, just for a few hours relief, sad isn't it.

i'm sorry to be whiny when everyone else is so much worse off, but i have to do it here. i can't whine to hubby, he is having his own pain(ruptured discs at c4-5 inflammed again) and i can't say anything to my mom, she is stretched to thin also.

i guess i just needed to cry myslef out and b_ _ ch and whine and moan and groan.

the end, off to my nest on the couch

nina, if you read this, thanks for the info(i got 6/9)

blessings to all,

blackwolf :)

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I hope you get some relief soon. Everyone needs support and a place they can vent so don't feel bad about that or apologize....that's what we are here for.

I don't have any great words to offer but just wanted you to know you aren't alone and I do care. Try to keep in mind that you will have better days ahead and just hang in there inbetween now and then!

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Blackwolf,

hang in there! You might want to see a pain management doctor--they specialize in dealing with chronic pain. Mine is well aware of the fact that I have EDS and that there is pain associated witht that diagnosis. He has me on a long term course of pain medication, at a low dose, to keep my pain level tolerable. Also, he can treat migraines.

Pain management is a subspeciality of anesthesia in case you're hunting for a listing in your health plan (if you have a health plan!).

Nina

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Hey Blackwolf! You sound exhausted! Sorry things are so rough for you! Seems like you've been pushing pretty hard. Maybe you could change up your routine a bit... try swimming every other day (once you start to pick up again) so you give yourself a chance to recover? Don't give up! We are here for you, please vent all that you need! I hope you can see your internal med doc about that headache! How horrible! You can't do everything alone, so be sure to ask for help when you need it. Take care. Laura

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Guest Julia59

Blackwolf,

You come here and vent anytime you need to. I just noticed your post as I was shoving a tablespoon of nestles chocolate chips into my mouth---my usual routine when I go to check on my POTS buddies. Only 4 grams of fat---and it gets the job done----gotta have that fix.............

It does sound like you need to go see the Doc. I hope she can fix things for you.

Those headaches you deal with have got to get in more control. I would go nuts -:) ---I would not handle it as well as you. You have tried your best to lick it , but now you need halp as your medication of choice is not working anymore.

Sending you a hug and prayers to feel better soon.

Julie :0)

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I'm so sorry you down. Your not alone. I think it's great when someone comes to us to give them strengh and reassurance that is deeply needed. Because unfortunately the people on this site are the only ones who seem to TRULEY understand. I'm sorry your in so much pain. Hang in there and I hope you get relief soon.

Sending my caring thoughts to you

Dayna

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blackwolf-

just wanted to send a virtual ((((hug)))) your way. i agree that it's time to try a new resource for some headache relief but can't imagine how tough it must be to pursue the help when you're still fighting the pain 24/7. hang in there. i hope that you (& your hubby) are feeling better soon.

:-)melissa

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thank you everyone,

poohbear, ernie, laura, julie, dayna and melissa- thanks, i needed that hug.

roselover, i'll take the flower but pass on the food, not settling so well.

mightymouse-i reciently started with a smart, kind and very understanding pain mgt. doc. i really like him and see him today at 2 pm.

i'm sorry it took so long for me to get back to you, but things have been really bad. i ended up in the er monday, i got a mega dose of compazine and toradol(sp?) and morphine(huge dose). a cat scan of my brain was "normal", but my spine was "depressed" both in my neck and middle back. they had wanted a mri with contrast and a spinal tap( yuck!!!) i opted to go home and rest here, to follow up with my pain doc today. thou in a way i wish i had given in and stayed. i can hardly move without tons of pain and now it is begining to effect my walking even more, not to mention my breathing. i know, "would i like a little cheese with that whine". i am hoping for a major breakthrough today or it is back to the er. just not dealing so well.

again, thank you everyone. i will write if i can, otherwise i might be "other wise occupied for a few days" if you get my drift.

{{{hugs}}}}} back

blackwolf

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pain doc has me back on pt now land based and water workouts.

i have last 14 pounds in 3 1/2 weeks, he was floored and unhappy that i was losing weight because of pain issues. we have decided to opt out of narcotic use for now and are hoping that the pt(ultra sound, moist heat and the new excersises will help. if not we are looking at something to stabilize my ribs(there about 6 different ways to stabilize them, mild to down right not moving, mostly done with wire to stabilize the ribs, but there is one procedure that uses heavy metal flat rods :) )

physically, things are getting worse, i have had to start working with my internal med doc to see about getting a walker. i have been using two canes, but took a tumble when one slipped away and the other just didn't hold me up. kinda scared about the walking thing, but what can i do. i am often nauseated, stiff and in pain. i have been back to the pool yesterday and today, thou i am regretting today, very tired and weak feeling. i get winded easy and dizzy and lightheaded so fast, it is scary also. talking and swallowing too.

down to the wire now, i'm scared. what will happen next and how will i deal with it.

just to make things more fun i have a wedding at the end of the month(my daughter is the flower girl and we made a dress for her) and i am so afraind of something happening, i'm scared to go. but can't stay home alone, my parents are going to the Black Hills and i will have no one in town that i trust enough to stay with. the 29th is the rehearsal and dinner and the wedding is on Saturday with a sit down supper and dance to follow. not sure what to do or say to anyone?

thanks again every one for listening to me rant and rave. cyber hugs all around!!

blackwolf

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sorry that you've had to be at the ER but glad that you feel good about your pain doc & that you at least have a plan going forward. i'd meant to mention it earlier but i'm glad that you're also backing off of the swimming a bit. i'm the last one to discourage activity & especially swimming, but when your body's struggling so there is definitely such thing as doing too much. one of my autonomic docs tells me that he has to push most patients to do more activity but that for me & some others he has to tell us to cut back. doing too much can do me more harm than good, and especially if you're having a lot of trouble eating & maintaining your weight your body simply is struggling just to have the energy for day-to-day nevermind exercise. i hope your new regimen goes as well as it can.

and as far as the wedding, it sounds like a tough decision that ultimately is yours to make but won't be easy either way. in terms of going, would you perhaps be able to use a wheelchair? i'm not saying this is ideal, but perhaps it would make it a bit more doable? or if you stay home would you need someone with you 24/7 or just to check on you every few hours? this can make a big difference in terms of options...

good luck & keep on keepin on,

:-)melissa

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dear melissa, sorry it took so long to reply, but i have had to just crash on the couch between getting things done.

i still say i am in the poor to sh_tty catagory tonite, but i just had to see what was going on here.

pt is ok, but not going the greatest, the pools we have been going to you can walk right into, it goes from 0" to 5' 8" at the very deepest. there is a railing you can hang onto to walk down in. with these last few days going from hot to nice to down right nasty-hot, i have limited my trips to just the basics, store(using a cart) and pt, even skipped church. my hubby leaves tomorrow for his trip with his dad, i'm happy and scared at the same time, all those what if's... i'll just pray and go with the flow. i will miss having a driver, but i know i can drive in an emergency.

sorry, rambling alot, rather depressed. new troubles to add to the old. bladder just not working right, and now i have little "needle pricks" that are startling and painful. does it ever end?

sinking deeper, but still lurking(sometimes)

cyber hugs all,

blackwolf

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blackwolf,

i am so sorry that you are going through so much incredible pain. have you found out anything more about the MRI?? i hope that might shed some light...

i hear you on the 'fear' thing...it is very hard to take it one day at a time and not be scared about what is going to happen next...

i wish i had more words of wisdom...mostly i wanted to let you know that i was thinking about you and missing you on the board and sending you a hug down there in the canyon!

please update us when you are able, k?

so many 'oldies' are away a lot these days and i don't know whether to worry or hope they are off enjoying their summer! for me, it's a mixture of both health crises in between some summer visitors...

hugs, em

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hi blackwolf -

it's good to "see" you checking in. i'm sorry things are still so rough. obviously i can't know exactly how you're feeling but i can relate to feeling like it never ends. i've had a rough week - a crash health wise & unbelievable craziness dealing with health-related stuff on the phone (wheelchair order, insurance issues, med records, docs, etc.), so i know how overwhelming things can feel.

i'm glad you're getting on with the water PT...i know it can be slow going but it's still great that you're keeping going with it as every little bit helps. try not to be hard on yourself about limiting activities, missing church & the like...you need to do what you need to do to best take care of yourself right now. i know that doesn't make it easier but try to remind yourself that you're doing the best you can be for where you are right now.

i hope things go well while your hubby is out of town. that you are able to enjoy the time to yourself & that no pressing problems arise while he's away.

i don't know what variety of bladder trouble you're having but hope it gets better or that you're able to get some help in dealing with that soon. it's something that was added to my bag of fun this past year but i will say that, while not fun, it has been one of the easier of my symptoms to treat in the big scheme of things. i hope the same will be true for you.

it's always good to hear from you.

hang in there,

:-)melissa

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dear em- thanks for the kind thoughts, i could use them right now. things are falling apart faster and faster. now i will start the process of getting a walker B) i can only hope that things go better than the trouble sunfish is having.

dear melissa-i was sorry to read about the wheelchair troubles, i will be starting on the walker next week and then, if things get much worse, a wheelchair also.

i feel like everything is frezzing up in my legs, like the signals just aren't getting thru, unfortunately, i can't weem to get thru to the docs about it either :angry:

hubby is now on his trip and i really hope he has a good time, he needs it so bad.

thanks for letting me whine and have a pity party

blackwolf

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