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emeraldkimmy
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/23/2011 12:21 AM (GMT -6)   
Hello,

I have just found this forum after searching for advice online for what continues to be struggling with care providers on several levels. This is my first post, and I apologize in advance for its lengthiness but I am desperate for advice. I promise that future posts will be nowhere near this long.

I am a 35 year old woman who struggles with chronic back and neck pain due to injuries sustained in a car accident in 2008. I have also suffered from chronic kidney stones since age 26.

I've had pretty much everything that can be done short of surgery for my back and neck from a variety of providers: PCP, pain management, neurosurgeon, physical therapy, massage, acupuncture, and even Chinese cups that use heat to suction and treat the injuries. I've done stretches, cervical traction, epidural and caudal injections of cortisone, facet joint injection, trigger point injection, and been on a variety of medications both OTC and prescribed. Flexeril, Soma, Zanaflex, Mobic, Voltaren, Lodine, Neurontin, Codeine, Vicodin, Percocet, and even Vicoprofen which trashed my kidneys. I NEVER took all of these at the same time; it was a matter of finding out which meds worked best to control my pain. Now it's down to Neurontin, Lodine, Vicodin and Flexeril (the last two are as needed, and they are needed at times when my pain is so unmanageable that I cannot sleep or do anything).

My problem, though, is with PCPs. Besides the PIP claim on the accident, I am otherwise uninsured and cannot afford private health insurance. I do not qualify for Medicaid and my employers at the time did not provide insurance. Anyway, I'll get to the problem that has now caused a great deal of heartache in addition to the pain.

My first PCP was one of those doctors who didn't like prescribing narcotic pain killers, which I assume has to do with fears about the DEA. My ruptured discs and degenerative disc disease had already been found in MRIs by the neurosurgeon and my PCP was the one who referred me to him after six months of my PCP acting as if my pain was just minor muscle spasms. I called one day because I was in so much pain I could not concentrate on work and got my PCP's assistant. I was nearly in tears as I tried to convey that I was truly hurting (neurosurgeon rules say they do not prescribe unless I had surgery which I did not but was a candidate for). The assistant argued with me, and wouldn't transfer me to the front desk to schedule an appointment, saying my doctor did not think I needed to be seen let alone needed something for the intense pain in my neck and back. The next thing I knew, after seven years with this doctor, I got a letter saying I was dismissed from her practice and no other doctor in the group would see me either because I was "rude."

My pain management specialist dismissed me because I could not pay the bill (I ended up filing for bankruptcy under Chapter 7 recently due to all these medical bills), so my next PCP in a different practice was about to take over my pain management when a case of kidney stones suddenly hit me. Between my back, neck and kidneys, I felt like I was dying. I missed a lot of work. During the tests the new PCP was running, I had brought in a 24-hour urine sample to see what my kidneys were doing (or not) to cause the stones. My kidneys were full of little stones per the CT scan and they were on the move. I struggled to drive across town with the sample (which I had in my refrigerator with FOOD in there), sick and in pain, and delivered it to the lab. When I told the lab that I had kept the sample in my refrigerator for five days straight, the lab tech snapped at me that the sample couldn't be used. I was practically hanging on the counter to stay standing I was so miserable and this woman just snapped at me. I couldn't believe her rudeness and I refused to submit another sample, saying I had collected and stored it exactly as instructed. The tech did some dip test of the sample and had to take it (it was totally usable by the way) but she was testy about it.

Note that in both PCP practices I had always been courteous and polite, and even joked with a lot of the staff at times. I felt I got along fine with everyone, though during appointments, I would always ask the nurse what my b/p, temp and pulse were. She'd just say "normal," but I have always insisted on having the numbers as I was a CNA once and I do know what is normal for me. She always seemed to be annoyed that I asked even though I always asked and she knew this.

Next thing I knew after this lab thing, I get a dismissal letter from THAT PCP! I was accused of being "rude and antagonistic" to "several" staff members, but the doctor had always said into his dictaphone at the end of the visit that I was "cooperative" and "pleasant." Always.

I apologize for this long post, and I know that posts are not supposed to be long (all subsequent posts from me will be the proper length). I just wanted to explain the situation with some detail. I understand a doctor dismissing me for not being able to pay him. But to suddenly be accused of "rudeness" and "antagonistic" behavior without benefit of asking me first, especially after all these people had largely viewed me as "cooperative" and "pleasant" is a rude shock, and very hurtful.

Does this happen to people a lot if they ask for specific information about their basic health and a nurse or doctor doesn't want to say? Or people who are snapped at rudely for no reason when they followed the instructions carefully and did their best despite a severe illness coupled with chronic pain and acute pain at the same time? Especially people who are miserably sick and in pain and are treated rudely? Can one blame a patient in that position for immediately taking offense to such treatment? Does it have to do with my meds? I just don't understand. I want to rise up in my own defense but am unsure how to go about it. Please advise, someone. I just feel heartsick over the whole thing.

Thank you in advance. Your advice and support will be deeply appreciated.

KBH
Chronic back and neck pain - car accident, degenerative disc disease, chronic kidney stones, uninsured.

Testosterone
Regular Member


Date Joined Jan 2011
Total Posts : 52
   Posted 1/23/2011 2:36 AM (GMT -6)   
I hope you contacted a lawyer in regards to your car accident. At to the toehr stuff...there is emergency medicaid etc that you should qualify for.

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 1/23/2011 5:03 AM (GMT -6)   
 I am sorry this happened to you but can relate. Would you feel comfortable to call the office and ask to speak to the doctor? If not I would write a letter. I know it is stressful to start with someone new but sometimes it is just better. Do you have a doctor in any of the specialties you have seen that you could get a referal from? Do you have a major teaching hospital near you that you could call and get a referal? I hope you get some relief and a caring doctor

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 1/23/2011 10:27 AM (GMT -6)   
Dear Kimmy,
 
          Good morning. My name is Dani and it is very nice to meet you. As you can see we have many kind, caring and compassionate members. I do hope you find The Healing Well Community to be a fun and relaxing place to be.
 
          I am terribly sorry you have been treated so badly by so many medical professionals. It sounds just awful. I went through a period last year where I was unable to pay many of my medical bills. It never occurred to me that I could be dropped from their practice for being unable to pay. I just cannot imagine how hard your life is right now.
 
          I have only been "sick" or a chronic pain patient for about 4 years now. I have however run into quite a few cold and callus medical professionals. I don't get upset when one is rude or abusive. I try to get through those interactions as quickly as possible. Short, quick answers. I had one rude about my pain.. so I stood up, took off my jacket so my deformity could be seen. Another one, a specialist treated me badly and too this day is very sorry. I even see him casually while seeing my other doctors. He is always concerned and polite. I just wont be one of his patients after the way he brushed be off when we first met before even taking a simple x-ray (a simply x ray could have told him all he needed to know). I forgive, sure, but I refuse to put myself in situations where someone treats me badly. I just don't go back to see that person again. It is just that I am too tired and too sick to have anyone like that in my life. Not from friends or family. Definably not from anyone I pay to provide a service for me. I must say that if I were in your shoes I would try to be seen in a teaching hospital a university hospital.
 
          Unfortunately I have no advise to give with regards to being dismissed from a doctors care.  From your descriptions it sounds terrible and sudden. With no alternatives other than starting all over. Do you even get a copy of your medical records to take to a new doctor? My only suggestion would be to get in with a teaching hospital for your pain management and urology problems.
 
 
            It was very nice to meet you and I look forward to knowing you better as time goes by.
*hugg*
  dani
 

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 1/23/2011 12:24 PM (GMT -6)   
Some times you have to wonder who really runs some of these doctor's offices. Is it the doctors or is it the head nurse or even worse the receptionist.

You can try to contact this latest doctor who kicked you to the curb either on the phone, in person, or via a letter but if this was done behind this doctor's back by the his staff the odds are pretty good that the doctor will never get your messages, letters, etc as they will be intercepted by the staff.

I was kicked to the curb myself by my last PCP for missing too many appointments. The reason I was missing appointments was a medication I was on was causing memory problems. After getting the letter telling me adios I wrote one in return explaining why and never heard anything back and I never ran into that doctor out some where to ask him face to face if it was his doing or his staff's.

I personally do not know anyone who is sick and/or in pain that does not get at least a little edgy and testy simply because they feel like crap and since this has happened more than once for the same reason I would strongly suggest that when you find a new PCP that you talk to him about it. Tell him your story and explain that as far as you know you were not being mean or rude to anyone but because you were sick and hurting maybe you were unintentionally gruff and you don't want this to happen again and go from there.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16788
   Posted 1/23/2011 1:44 PM (GMT -6)   
Hello and welcome to Healing Well's chronic pain forum. Wow, I am just floored after reading how things went with these two PCP's offices. I think in every office we always are going to have our favorite nurses and ones that we would just as soon not bother coming to our room. But, even in the situation I have never encountered what you have. One thing I firmly believe in is they all work for me, I am hiring them, and as a patient I do expect to be treated with courtesy. I am another reason they have a paycheck.I really do not have anything to offer as to how to conduct yourself at a drs office, I think you already know how to that.

One thing I would do is sit down and write this last PCP a letter and on the outside of the envelope write personal & confidential. I would explain just as you did here what happened with the lab person. I would also state at no time was I rude, although the lab person was and was giving you a hard time over the urine specimen. If you want to continue with this clinic you could put that in there too. It may or may not help you but at least you got something off of you chest by writing the letter. I would not want to continue treatment there simply because of how this situation was handled. I see a dr that is going to back his staff not matter who is in the wrong.

I think Dani came up with an excellent idea of trying to find a teaching hospital in your area. A lot of people end up at one and get very good care. You don't have all of the big ego problems in a teaching hospital like you do at other places.

Anyway, I wanted to pop on and tell you welcome aboard. Keep us posted on how you are doing.
Moderator Chronic Pain Forum

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9250
   Posted 1/23/2011 7:07 PM (GMT -6)   
Hi and welcome!

Just a quick not to put in another vote for getting into a teaching/university hospital. They see and help many people who have been pushed off as with a "sorry, there's nothing else we can do for you" type of comment. These are the people doing the research so the PCP's and specialists can do their jobs. Unfortunately not all doctors nor their medical staff will agree.

Don't let office personal or nurses walk on you. You and your time are just as important as theirs!

Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein

emeraldkimmy
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/24/2011 8:47 PM (GMT -6)   
Wow! Thank you all for the comments! I feel a lot better now.

We do have a teaching hospital in Oregon but it is in Portland. I have considered writing a letter to the last PCP who dismissed me. Even if I do, I don't think I would go back there because of this. I'm now looking at different doctors in the area so I'm ready when and if I do get health insurance. And I will address what's happened with the new doctor.

Thanks again, everyone! I feel so relieved.

KBH
Chronic back and neck pain - car accident, degenerative disc disease, chronic kidney stones, uninsured.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 1/24/2011 10:46 PM (GMT -6)   
I just wanted to jump in and say welcome! I am very sorry you have suffered like you have!! I see that you have received a lot of advice and I really do not have anything to add but I wanted to welcome you to our family! I look forward to getting to know you! Take care of you!!

Hugs,
Beckey
Rheumatoid Arthritis, Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus

Medications - MS-Contin, Plaquenil, Cymbalta, Famotidine and currently Prednisone

SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 1/26/2011 3:20 AM (GMT -6)   
Hey Kimmy!
People can be jerks! And just because it says "MD" or "RN" or some other equally great suffix doesn't give them free reign to be jacka**es to people who are already in a bad way. I got my first kidney stone on my 26th birthday- and have had at least one every year since (I'm 37). They suck! And health professionals should know enough to tell you when they send you to the lab that it needs to be a fresh "sample"- so not your fault at all! And I live in Illinois and I can tell you that lab people all over can be snippy. Normally its because they are understaffed and overworked- again not your fault. But I will give you a secret that has helped me with the lab techs- I find something that I can sincerely compliment them on (usually their nails are impeccable by trade or they have unique scrubs). If you treat them like they matter they will warm up to you. But there will always be those people that no matter what will be sour pusses! Doctors and their staff really have no idea how their demeanor and rhetoric effect us. And they are stressed, but last time I checked so are we and we are in pain; so that trumps it. I have found that if you act calmly but firmly its a respect thing. Now I have my days- just the other day my pain mgt doc made me feel like a drug seeking junkie! My Mom has begun to accompany me to my appts- having another person their is good for you as well as the doctor. They don't tend to push me around with Mom there! But he handed me a script of a new pain killer (I am on a monthly allowance of Vicodin from my GP but it wasn't working so well so I went to a pain doc when my GP wasn't comfortable giving me more Vicodin- 4 5/500 a day-). The pain doc has done one set of 3 cortisone epidural/spine injections which did nothing and was now recommending another injection procedure. My Mom stepped up and asked for a better pain med in the meantime. The doc handed me a paper script for Percocet to be filled with no refills. He then told me to flush my Vicodin down the toilet. I told him that I was out of Vicodin but had a refill waiting for me in case he wouldn't give me another type of pain medicine. He told me not to have it filled. Then he asked me what pharmacy I used! Since he had written the script he wasn't calling the pharmacy to get one filled so I can only suppose that he was calling to see if I picked up my script that was waiting. I felt dirty and ashamed and I have no idea why- I will eventually need that refill for my chronic pain since the percocet is for only one month until the procedure. Guess what? The Vicodin will be used for the foreseeable future after the procedure for my fibromyalgia pain. And I also had blood pressure medicine and my birth control pill on that order. I was so freaked out that I didn't pick up any of them! Eventually I will have to, and I guess I could cancel the Vicodin but in 2 weeks I will be back in there picking it up! So why can't I pick it up and throw it in the cabinet? Because this Dr. made me feel like a junkie! So just know that you are not alone! Be tough and come here as much as you need to! We are here for you! Good luck and hugs!
Dx'd: TMJ-1997; High Blood Pressure- 2007; Fibromyalgia- 2009; Raynaud's- 2009; Arthritis- 2010

Medications- Who can keep up? If its out there for what I have or might work to prevent pain for what I have then I have tried it. But actual pain relievers- not so easy to get in the Land of the Free.

emeraldkimmy
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/26/2011 4:02 AM (GMT -6)   
Hey, thanks, SadSickTired!

I know how you feel. Being made to feel like a junkie is the worst feeling in the world, especially when we have real pain that responds to no other treatment.

I do know this about Vicodin and Percocet: they are on different schedules of the controlled substance list. When I had Vicodin as my pain med, I could have a refill once a month but when it was Percocet (before I developed an allergic reaction), I had to have a written script every time because of the DEA regulations on it. The doctor is required to write a prescription for each and every time Percocet is filled. Anytime a new prescription for Vicodin is filled, it has to be a written prescription handed to the pharmacy (no call-ins on narcotic pain meds - that's how regulated things have gotten) but it can have one or two refills on it. Knowing that helped relieve some of the feeling as if I was being treated like a drug seeking junkie.

I would say have the Vicodin script filled anyway. There is no reason why you should not. You may very well need it.

The down side is, doctors don't always explain the Controlled Substance schedules to us and instead use what we don't know to make us feel bad for no good reason. Personally, I think it's cruel to play that kind of game with patients in genuine pain who need this treatment. I hope that with more research, more understanding comes to care providers.
Chronic back and neck pain - car accident, degenerative disc disease, chronic kidney stones, uninsured.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 1/28/2011 8:06 PM (GMT -6)   
SadSickTired
I read your post and I sympathize with you, I also reside in Illinois, and I do understand how you feel, but I think some of your feeling might be from lack of understanding, I know mine was. Every time I go to my Pain Doctor the first thing you do upon checking in, is grab the small brown paper bag with the cup in it, and head for the restroom. When I first started going there, and read and signed there agreement forms, I was rather insulted, I felt that they were treating me like a drug addict, having to pee in a bottle every time I come in for my monthly refill, and then when I give them the bag with the urine sample, I have to tell them my weight, and when I took my last scheduled pain med, and my last pain med for break through, and any other meds, that I might have taken. and when. Then I have to initial the form in several places and sign at the bottom of the paper, and then go back to the waiting room and wait to see the doctor.   I found that there is a reason for all this, not just to check to see if you are abusing your medications, but also to see if you are even taking them! Which I had never even thought about!  Shortly after I started going there, there was an older gentleman  that was just livid and raising a big fuss,  I mean he was just raising cane, and making a scene in front of everyone in the waiting room, none of the nurses, or staff could calm him down. It was because the doctor would not renew his prescription for his pain meds. Finally the Doctor had to come out, and he was really getting loud,  and started  bad mouthing the doctor, and  he would not go back into the  exam room and talk to the doctor in private. So the doctor finally said to him. that he did not need the pain medication any more, that in the last two months, his urine showed that he had not been taking the medication and there was not a trace of the med in his system, and if he wasn't taking the medication, what was he doing with it? and why did he need it? As soon as he said that, the patient immediately shut up, and left the office in a big hurry! These Doctors are putting their professional lively hood on the line when they prescribe these medications, and especially now,since  they are constantly being checked. Your Doctor doesn't know what you are doing with your prescriptions! He doesn't know if your taking them or what??? Sure they want to trust their patients, you and I both know, that not everyone is trust worthy! Just like that patient I described to you. I am not making excuses for your doctor, but I do think, that allot of us that are being treated for chronic pain, need to take a more objective look,  and realize that what we might think and believe, might not be, what it actually is!  You also assumed that he was calling your pharmacy for a reason that may, or may not, be true. You have heard what the word "assume " means? when you assume you make an " a**" of "u"  and "me" .   To keep from having those feelings m that you had, (that might or might not have been justified,) maybe you should have asked him why he wanted your to know what pharmacy you used?   Please know I am not taking sides, and I do understand how you feel, but only you can make that person ( doctor) make you feel the way you do!  Just make sure that the reason you feel that way is valid!    I personally learned a very important lesson that morning in my Pain Doctors waiting room! Things are not always the way they seem, and I had "" assumed" something that was not a valid ""assumption""! . And since that time I have found that I really do have the best Doctor that I have ever had! He honestly cares about not only treating my pain,  but also my entire  health and well being as one of  his patients!  I feel very, very  luckily and blessed to have such a Doctor!  Maybe your Doctor is not like mine, but I just wanted to present you with possibly  a different way of looking at your situation.
 
I do wish you well and good luck to you!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Post Edited (White Beard) : 1/28/2011 6:19:42 PM (GMT-7)


SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 1/31/2011 7:31 AM (GMT -6)   
Thanks Whitebeard for the alt thoughts and cconsiderations. The doctor did call the pharmacy to see if I had the Vicodin refilled- I know the pharmacy employee from high school so I just asked. I would totally agree with controls and precautions any doctor would put in place for a long term program. But I got one months supply and was told without hesitation it would be my last. And that it was only because I agreed to undergo the next procedure he recommended. That's why I thought it was overkill. And here's the hoot of it all- I've been taking these now for a week (Percocet) and they don't even work! And I guess it's a strong version (10 mg). But they don't even work as well as the 5/500 Vicodin. So i did go ahead and get the Vicodin refilled. Not surprising to me- I'm a weirdo! The stuff that works for most doesn't do so hot for me. Like when I get a kidney stone. If it doesn't pass by day 2 or 3 I go in to the hospital where they put me on a saline bag which is great because I can't drink or keep down water as quickly as the fluid IV. And they also hook me up to Demerol. One time they switched me to morphine and it felt like nothing- but the Demerol which is similar works well. So I wasn't all that upset about the Percocet. However, the normal side effects of the Percocet- those I got. Nausea, dizziness and constipation. I never got those with the Vicodin.
And I would be more than happy to go along with any rules the doc had (drug screens whatever they asked). But no one has offered me any long term pain meds except for the low dose Vicodin my GP gives me. I would suck up the feelings of being treated as suspect as they want if I could get something that works. But no one has and until they do- they don't have the right to make me feel dirty and ashamed. But you are right I do have some control over how people make me feel ordinarily - but as a lot of people can relate to- I'm so worn down from pain and lack of sleep from the pain I cant even keep myself from crying daily let alone at an appt. I can't control how I feel about myself let alone from a doc. I'm a disaster. So I probably was really sensitive. That's why I come here and appreciate friends that offer any thoughts or insight. I so so appreciate the help Whitebeard- it will make it easier to see other sides. Right now I just want the pain to go away. And I will keep trying to find a doc not afraid of narcotics- and I will have every procedure along the way if it will help to prevent the pain. And I will not stop seeing new doctors until I find one that wants to help me. The only problem is where do I look now? I've been to every pain doctor in a 120 mile radius and I don't know where to look. Any ideas guys? I'll take whatever I can get :)
Dx'd: TMJ-1997; High Blood Pressure- 2007; Fibromyalgia- 2009; Raynaud's- 2009; Arthritis- 2010

Medications- Who can keep up? If its out there for what I have or might work to prevent pain for what I have then I have tried it. But actual pain relievers- not so easy to get in the Land of the Free.
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