tired of doctors, pills, etc., (a little venting)

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PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/6/2008 5:30 PM (GMT -7)   
I just need to vent a bit. I'm so tired and I know that I'm at least fighting an infection, and probably should go see my PCP. But sometimes I can't stand to see one more doctor. To have one more prescription filled. I had some blood work done a couple of weeks ago and I have to have it re-done because of some abnormalities. I suppose it's my version of Ruth's "kevorkian moments" but sometimes I just don't want to know.

Does anyone understand that - not wanting to know, especially if there is something seriously wrong (in addition to our CP issues and diagnoses)? I've not had a colonoscopy and my PCP always reminds me, but I've got enough problems from the waist down to my toes; I don't want anybody else messing with that part of my body, and if I did have cancer I'm not sure I'd have the energy to care. Sort of would feel like fine, just give me some good pain drugs and leave me be. I just wouldn't have it in me to tackle one more major problem. Anyone feel like this?

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/7/2008 1:57 AM (GMT -7)   
The very reason I schedule a "pity party" every few months! Those tend to make my "Kevorkian moments" farther apart.
 
I think we all get there at some point and then like to revisit them from time to time.
 
Most of us have had to be put thru the ringer to even get a diagnosis and then hung out to dry to get treatment and by that time we just want to be left alone.
 
I like you put off and put off those things which I can and I think with me it is my way of taking back some kind of control over my life. Since becoming a CP I lost all that control which we all like to retain in our lives,always jumping thru hoops for someone whether it is family,friends,Docs,therapist, you know what I mean. I can and do utilize my refusal to do some things they request of me and sad to say it usually comes in the form of other health issues since my CP wont allow me to refuse to do anything for then I suffer greatly and lets face who wants to be faced yet again with another diagnosis to add to the list?
 
My Doc has been on me for years to have a mammogram,simple enough and It has been a number of years since the last and I am on meds for menopause that increase my risks and I know all that,am well aware of the fact but does it make me schedule the thing? Nope!
 
Like you said even if they found something I know to what extent I would allow treatment so I dont think it would make any difference one way or the other as to the diagnosis of that test.
 
I feel the same way about colonoscopies really and unless I was in dire dire pain or hemorraging nonstop I probably wont ever have one.
 
I know this isnt the acceptable thing to do really I worked healthcare for years and years but I am tired now and just want to be left alone as much as possible.
 
I also know that one day I will get out of bed and feel different even if it is just for that moment in time and make those appointments but for today? I think not.
 
Its all Ok in the end and and on those days I just crawl back into bed and pull the covers up over my head and refuse to deal with the world today? I think I have deserved that right and so have you!
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


kara487
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Date Joined Mar 2008
Total Posts : 637
   Posted 3/7/2008 6:32 AM (GMT -7)   
Hi PA, I am sorry to hear you have an infection. I know what you mean I am sick of having to take medications and seeing Dr's. I think we all  experience that . I agree with Ruth I have a pity party sometimes too. I think we need to sometimes. I hope you have a LPD and weekend.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 11:00 AM (GMT -7)   
Thanks to all of you for your support. Ruth, I think you hit the nail on the head about wanting some little slice of control, even if that means saying "no" to certain things. I don't think what I've got now is any more than a sinus infection, and I know eventually I 'll get that blood work redone, but when I feel like it! I do have my mammograms, probably because most of my problems aren't in the upper half of my body except for cervical spine stuff, but I think i'm with Ruth about a colonoscopy.

Gramps I'm not suicidal, I'm just tired. And I'm looking outside at approaching blizzard conditions here in PA, so now I've got to get the neighborhood kids' schedules to help shovel me out sometime over the weekend, and I've got to pay them to do it. But at least I don't have to go anywhere. Just hunker down some silly tv today!

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 11:15 AM (GMT -7)   
Thanks. Gramps, I will. I do have some old meds here to help try to keep sinuses from getting worse, and I'm not running a fever. Going to up my VIt C. though.

I hope you you get through to your PCP, too, and feel at least a little better.

Joan M
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Date Joined Jan 2006
Total Posts : 1973
   Posted 3/7/2008 1:27 PM (GMT -7)   
for a totally different point of view, here i am. i see doctors as sort of the high priests of our society...they have the power to "cure" us as the old priests had the power to transport us to heaven. they both have special languages, special books and of course the scripts...almost biblical, eh?

it is all baloney in my opinoin. i consider that i live in health care hell for three reasons...one is that i don't have a lot of money (this is definately the most important one), two is that i am a female and three is that i am older. unfortunately we have to do the best we can for ourselves, check stuff out on the internet, etc.

i have gotten to the point that i am quite insistence with some of the "support" staff...because i don't think they want to help me but that is what they are being paid to do.

so long everybody and hope you feel better palady and gramps

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 2:36 PM (GMT -7)   
Joan - pass the oar. I think we're in the same boat. LOL I'm an older female, and alone and I agree the worst part of everything is the financial hell. That creates so much more anxiety and therefore more pain - but that anxiety is real. Like where am I going to live in a couple of months when my resources dry up, considering it will take forever to get some SSDI. Yes, I can get a little help from SSI, probably, but it's such a pittance I don't know if I'll be able to pay the most basic of bills to keep my small, "rustic" (meaning in need of much repair!) house. And of course there's paying for all the health care coverage, co-pays, etc. Health care hell. A good description.

By the way, I posted more info on Radical Acceptance under Ruth's thread about where this road leads.
Thanks!

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 3:52 PM (GMT -7)   
Gramps - grab an oar and move into the boat!

Reading your post makes me so angry! GRRRRRR!!!!!! I'd better watch what I type or it'll be deleted. It's March 7th and you're supposed to let an infection fester and bloom until the 18th??? This is so, so sick. And yes the costs of going to the ER - enormous. Do you have any other doctors you could like (of course, I know how much you feel like doing that!).

I wish I could do more than just empathize and send hugs, but unfortunately it's all I can offer. Just know I understand and am thinking about you and wishing another option opens up. Still, if you have no choice but the ER, at least it's treatment and some more documentation at the pathetic state of our health care system.

Hugs,
PaLady

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 5:15 PM (GMT -7)   
Do you think if you explained how ill your mother is, and that you don't want to transmit any illness to her but want to be able to spend time with her, that would help with your PCP's office?

I, too, have dragged my feet on finding a new PCP for a variety of reasons. She is fairly well known in the area, but made me beg for a couple of vicoden for so long I hate the thought of going back - which is probably why I resist in terms of even a sinus infection. I haven't returned to my PCP since my back surgery last Sept., and I know they won't like the amount of meds I'm on, which are still being prescribed by my surgeon. I just don't want to deal with her if I don't have to. Trouble is as you well know finding a new PCP doesn't guarantee one won't go from the frying pan into the fire.

Raven67
Regular Member


Date Joined Sep 2007
Total Posts : 155
   Posted 3/7/2008 10:00 PM (GMT -7)   

Hi PAlady,

I just posted about this last night, on another thread (arthritis).  I am so fed up of being in pain every single minute of every single day.  I tired of life going on around me and for the most part, I'm unable to participate the way I used to.  I'm tired of doctor's and MRI's and meds and x-rays and more meds.  Meds that don't work a lot of times.  I need a glimmer of hope from somewhere. 

I'm thinking of taking a break from posting because of the negative way I'm thinking and don't want to bring anyone down with me. I know a lot of people are worse off and things can be worse but I also know that personally, I can take much more.  I called my PCP today and will see him on Monday in hopes of getting into some counselling.

Hang in there

Raven


When you get to the end of your rope, tie a knot and hang on!!!!
 
Current Diagnosis-Rheumatoid Arthritis, Insulin Dependent Diabetes, Osteoarthritis right knee, Osteoporosis. Stress!!!!!!
Current Meds-Methotrexate 20mg s/c weekly, Plaquenil 200 mg BID, Celebrex, Folic Acid daily, Cesamet, Oxycontin 20 mg BID, Lorazepam 2 mg dly Actonel weekly, Insulin-Humalog 35 units TID and Lantus 40 units BID, Calcium, Vitamin D


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/7/2008 10:43 PM (GMT -7)   
Raven,
Don't worry about bringing any of us down. I think the responses on this forum really indicate how we all have down times - sometimes often, but I know at least for me posting here has been a godsend. So continue your plan to go to your doctor, get a referral to a counselor who understands pain if at all possible, and maybe discuss with your doc that your meds aren't working. Maybe something needs to be reajusted. But I know from personal experience the frustration of trying yet one more med or procedure with hope of improvement, and then being disappointed. But don't be afraid of bringing us down; we take care of eachother!
PaLady

Joan M
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Date Joined Jan 2006
Total Posts : 1973
   Posted 3/8/2008 2:19 PM (GMT -7)   
raven...that is what this site is for ... we need to communicate with each other about our problems.
you do not make me feel down, you make me feel sane.

gramps...you are so right...they cover for each other and there is a book I read called Wall of Silence which talks about this stuff. too bad it is an us versus them situation without us they wouldn't have a job but nobody thinks in these really basic terms.

gramps...you are my friend too (even though you are male...we both have suffered at the hands of the fabulous medical profession).

palady...thanks so much for this thread and I will check out the radical acceptance theory...got to keep trying.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/8/2008 3:05 PM (GMT -7)   
Gramps,
can you go to something like the cvs minute clinic and just tell them your current symptoms-they don't ask for much history and I have sometimes left stuff out-(I "forgot" to tell them I was on pred when I needed an antibiotic on a friday night and could not go to my gp). I also tell them which antibiotic I want. I did tell my gp exactly what I did when I went for a refill of the antibiotics ten days later-including telling her that I did tell the clinic what meds I was on. (THe clinics will not treat you if you tell them you are imuno compromised.
Sj

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/8/2008 4:01 PM (GMT -7)   
HOLD THAT BOAT!
 
I am coming!
 
To top it all off my internet has been off since last night after that storm up north dumped 8 inches of snow on us down south,the first of that magnitude since 98. I finally got it back up but it is still really slow.
 
Gramps there is no doubt that I suffer depression and untreated at that since the meds to treat have caused me much more trouble then the depresiion itself. I either sufffer horrific hallucinations and have been hospitalized for those they have been so bad of I suffer extreme lethargy and sleep 24 hours without even going to the bathroom,and we have tried many many over the years. So I spend whatever energy is left over from the CP fighting off the dark hole.
 
So my pity parties and Kevorkian moments are used as my unanny witty treatment of depression cuased from CPP that can not be treated with uniform measures.
 
I dont deny I prefer NOT to know if I have a terminal illness as IMO folks tend to give up the fight and spend whatever time they have left withering away to nothing,if I dont know it doesnt cause me undo worry as I would not use conventional med to treat those diseases anyway. I have not seen enough success from high dosed of chemo and radiation to date to make me change my mind on that one but I have seen alot of folks who died from the effects of those treatments long before the disease run its course.
 
I think the Docs general attitude is that we are on enough meds that we should not be bothered by anything so they shake off most of complaints. I have even had Docs over the years tell CPPs that if they took that much narcotic they would never complain of anything or feel anything,what that statement tells me is they have never been in pain,achy maybe,acute pain that is here today gone tomorrow and forgotten next week altogether.Dont I wish!
 
 
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/8/2008 6:05 PM (GMT -7)   
Gramps,
There are only two things left that I can say (you already know more about self advocacy than I will ever know).
I am so sorry that this is happening to you.
I will keep you and your mother in my thoughts and prayers.
I wish there was more I can do.
Sj

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/9/2008 3:26 AM (GMT -7)   

I am awed at times how inefficient some of these ERs are and how any Doctor,PA,NP or whatever the title can release a patient from their care and not have covered their proverbial a**! Pardon my french here but this irks me far more then any other one thing these days.

When I was doing my time in the ER I would have been terrified not to mention mortified had I let a person go out of there without at least covering the basics. Especially when it is related to systems that have NO room for error!

Sounds as though the NP you saw had far more sense then the entire ER staff gramps.

I think I know why this is too and in my opinion they have not and do not ever reach the moment in time when they think they are God like! ARRRRGH!

They know too that once they have seen you your insurance wont cover another visit for the same thing!

I worked several different ERs over the years and I use to think I would steal their little "black box" one day when I retired and turn into the nearest trial lawyer i could find.

In case you dont know about that little black box I am going to enlighten you so bear with me and dont get me wrong I cant say whether all ERs keep one but I worked two out of three that did.

They keep a little file box with index cards for FF"s,these are the folks like you and me that have tramped their behinds time and again to the ER seeking some relief before we turned "Kevorkian Moments" into relaity prior to getting adequate pain relief.

Yep your name and info got recorded on one of those litle cards and inserted into one of those boxes and then you were never to get narcotic meds again from that ER.

Either they knew you were a pain contract,addict,or at the very least you had far too many trips to the ER complaining of non=specific pain in a given amount of time.

Dont tell anyone but I use to remove cards randomly from those boxes. hehe! Serves them right,I needed scratch paper and that seemed to be the only stuff that counted as trash to me around.

That in itself is an absurdity isnt it? Now most of them put some type of little flag on your chart,sticker or something so my little removals wouldnt do much today

I know the folks that had earned a place in those little boxes did NOT get the normal consideration as others since they were known to be drug seeking or or chronic complainers and these are their titles not mine.

So in saying that Gramps I wonder if you have somehow earned one of those little stickers at that ER? Believe me when the Attorney gets your records THAT wont be in.

 


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/9/2008 6:30 AM (GMT -7)   
One of the things that bugs me is how unequal care is. No ER or doctor would dare treat me that way-or at least none ever has. Even when I was twenty two (I was a grad student at the time) and chronically ill-undiagnosed-all that labs kept coming back normal-on medicaid.
Not one doctor treated me with disrespect (well one did but his boss took him off my case in the middle of my visit). I was never told I wasn't really sick or sent home without proper tests. At the same time a friend of my mother's who was not educated and older had a hard time getting anyone to treat her for a diagnosed-backed up with x-rays medical problem.
It really makes me angry.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/9/2008 12:29 PM (GMT -7)   
Gramps,
The world and the health care system needs more people like you. It would keep everyone a little straighter.
Sj

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/9/2008 1:10 PM (GMT -7)   
Wow - when I started this thread I figured it would trail off into oblivion rather quickly - just me needing to do a little venting. Guess not!

Ruth- first I have to thank you for the laughs. Your boat comment had me ROFL!

But I also want to say I don't think all doctors are bad or uncaring, and that's evident by the variety of posts. I think the health care system, however, is so broken that it burns the caring out of many people, and remember I say that as both a CPP and a health care provider. Insurance companies and legalities - CYA mentality - dominates over care for patients in most settings these days, and doctors and others who try to fight that have an uphill battle.

Add to that another little piece - computerization of health care records. Now I know this is happening, and it has some good aspects to it, but Ruth's little black box has probably now been replaced by an automatic "flag" that only takes a keystroke to add to a chart. And once it's added by even ONE person, well, it's pretty darned hard to get rid of. Plus when I got medical records from my PCP for a worker's comp case (which she in part ruined because of the records mess) I found their office had recently switched to a new computerized system which "fills in the blanks" so to speak, so that any specific item (body system, organ, etc.) that was specifically talked about or checked gets noted as "WNL" (within normal limits). I found notes from different sessions which indicated I had no pain in areas that I had continuiing chronic pain, but because I didn't mention it, or only mentioned it briefly, it was noted as being ok!! Complicate all of this with being a CPP and you have a recipe for disaster. Oh, add to that recipe insurance company requirements which drive me CRAZY and have for the past couple of decades taken medical care out of the hands of doctors and people like me and you really have a mess.

I still believe there are caring people in health care, and I try to be one of them, but I can only work a handful (literally) of hours a week at a small solo practice I struggle to keep going. And a good part of why it's so difficult is the two foot stack of insurance paperwork, regulations, etc. that sit on my desk and make my head spin. This is why we have extremely few single practice doctors anymore; insurances have added a layer of bureacracy that forces health care providers to hire staff just for those purposes, and even then it takes away from your time and attention to patient care because by the time you fight with them you're exhausted - and has totally refocused the system. I don't think we'll ever go back to having docs like Ruths, but I can only hope that ALL of us as health care consumers - whether CPP's or other illnesses - have a strong say in how any changes to health care happen. Otherwise the only people left will be those who have thrown in the towel (despite their having once cared) in the fight for patient care over regulatory concerns, or those who never cared in the beginning.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/9/2008 3:43 PM (GMT -7)   
By the way, Ruth, that will likely have to be an ice boat at the moment. I got 23.4 inches of snow since Friday night! This morning I couldn't even open my door - not from snow, but from ice; I was frozen inside!!!! Thankfully my cousin has a plow on his truck and came over and shoveld and chiseled me out.

Eight inches of snow? For wimps!! LOL

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/10/2008 1:06 AM (GMT -7)   

PAlady, 8 inches of snow to folks who dont own snow shovels and havent for years and stores that only carry  5 per store in mid November is about the equal of 23 with people who have plows on their trucks right?

I am going to share another bit of laughter for you and show how our brains have not yet caught up with our CP. On Saturday after the last snow feel I borrowed my neighbors shovel(they moved here from New York) and went to work on my front walkway. Now this is a law in my city that has to be dated back centuries since like I said we dont have "snow storms per say anymore, that you must shovel your walk no more then 12 hours after the last snow falls and I wanted to be a good citizen.

I am out there about 20 minutes making very little progress anyway since my knee's are killing me from the cold temps in the teens when all of the sudden I proceeded to slide and kept sliding down my drive and I probably look like something out of a comic book now,flailing arms,horror clearly etched on my facr and still holding onto the shovel all to no avail and end up on my behind in the middle of the street!

Now remember teh last time we had significant snowfall I was NOT a CPP so my mind had played tricks on me and convinced my body I could still shovel snow! Luckily I did not get hurt ended up a littl esore and looking like a fool lying out there waiting for the neighbor to help me up and into the house! I havent had the nerve to stick my head out the door since and probably will wait until mid summer to do so!

Now back to the topic at hand, your right about the computerization of everything and how they use software that allows no room for remarks or explainations as most of these simply have q and a lines or boxes and if anyoen has filled out a CDR for SS then you know of what I speak. That is exactly how things we have reported end up being omitted from our records.

The last time I requested my record from the Ortho it was also on disk and had to be printed out by me before I could forward it to SS as I had no idea whether they accepted records on disk,also the med center went to records on disk late last year and that is everything,x-ray reports,Cts,Mri's the entire kit and kaboddle!

You hit the nail on the head when you spoke of all the extra stuff that Docs are required to spit out these days and just because we are more computerized doesnt make it any less of a hassle. My Doc prefers that he doesnt have to file any private insurance claims and he does however accepts mostly medicaid medicare and will file the supplemental programs for those. He no longer takes new patients and he has virtually stop doing hospital rounds as he doesnt have time the time he has he spends on office patients. It may take days or weeks sometimes to get pre-auths taken care of and any paperwork that needs to be filled out for W/C or SS may be a while as well. It has gotten better with the addition of a PA as well as a NP but there for awhile he could still be foundint he office in the middle of the night trying to take care of paperwork.

He is not young and as I have said previously he has had some very touch and go problems with his heart in the last years but he marches on and I worry each day he pushes himself beyond his limits healthwise. The schools are spitting out a few good Docs and PAs as he certainly found one in the new and young PA he has hired as sheis about the most caring and compassionate young lady I have met in a while.

He went months and months after the last one left and even went thru a few before he found her. A couple he hired was giving him a hard time over the policy of his office of treating pain patients and they did not feel comfortable with the amount of those he saw and they parted ways. This one has no qualms whatsoever with his number of CPP's and she is an avid listner and seems geniunely concerned. I really likeher and hope she takes whatever she learns from him onto the next level when she leaves.

Too bad she is only a PA and didnt go onto to be a Doc! She will only have so much influence on other Docs she works for.

At this point let me say that the restrictions set forth by insurance companies as well as medicaid in some states is a restriction that breeds nontreatment for alot of olks.

Here in this state medicaid does not pay for more then 90 days worth of narcotics in a given year(partof the drug wars( numbers of medicaid recipients that divert drugs) and that is only with a pre-auth. It also does not pay for PM with the exception of a consult without pre-auth and then if they authorize visits it doesnt pay for the monthly labs required for most contracts for PM. R.E. Tox screening and if you are a medicaid patient in PM you must be able to pay out of pocket for this to the tune of about $80 a  month, the reason most CPPs in this stae are treated by PCP's if they get treated at all.

I lived out west for awhile while a CPP and had medicaid in that state and it paid for my oxy that I was on at that time as well as PM so we are ages behind here.

All or most of this again can trace back to part of this states war on drugs and the number of poor folks they say divert or abuse pain meds and they try to offset the tax payers from footing the bill? In the meantime legit people dont get adequate care from teh state programs. They also do NOT pay for any med used to treat anxiety and again these are meds we use everyday to help relieve tension of back muscles and lower pain levels so we might get a little sleep,no benzo's paid by medicaid no matter what the reason your on it!

One RPH told me it was a federal regulation that insurances could not pay for these and I am meaning to look that up but I think I already know that was false.

I guess Gramps is right all along that before we can hope to obtain the proper care and treatment we have to change the way the laws work against us.


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1973
   Posted 3/10/2008 8:02 AM (GMT -7)   
well, i am trying help myself but i am really worried about some of these doctors. i have to see a pain management specialist and i am worried he is going to want to do something too drastic.

glad you are getting some help gramps and strangely enough it does come from some unusual sources

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2008 10:26 AM (GMT -7)   
Ruth - it took me awhile to realize you had changed your screen name, but I finally caught on! You're right about 8 inches of snow - actually that's a fair amount even for those of us who have shovels posted outside our door for half the year. Your fall, though, sent shivers through me as that's how I got my worst injuries - a bad fall, although not on ice or during the winter. But I live in fear now of more falls, and during the winter it is harrowing. I bought those special grips you put on the bottom of your shoes that help you walk on ice, and wear them nearly everywhere. Parking lots are especially hazardous. I sure hope you didn't hurt anything more from the fall. Stay inside until it thaws! Unfortunately, I opened my outside door this morning to see if I was again "iced in", and I wasn't only because I'd put a ton of ice melt right outside the door before going to bed, but a small icecicle (sp?!) fell and hit me on the wrist. Geesh! No major damage, though, just a small cut in need of a band aid.

Gramps, I'm glad you found someone with medical credentials who could review what the ER did to you. I sure hope they somehow get back to that hospital, but mostly I hope you can get some decent treatment for your infection.

My gosh, I just realized there's a section right below this that details who's online with me! Takes me forever to notice stuff.
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