Rare neurodegenerative disease called “Multiple System Atrophy”. Wheelchair, O2, & Bipap, intrathecal pump, neurostimulator, dystonia, neuropathic pain, spasticity...etc..etc.
I read your post and you are right "life is not fair" I think one of the things that upsets me, is that here in the United States where we are supposedly so advanced in the field of medicine, but yet in so many areas we are so behind compared to allot of other countries! Adequately diagnosing and treating pain, and Sleep Apnea, just to name a few. Everybody is so specialized now, and having a Primary Care Physician is not like having a Doctor that can take care of you, they are little more than building contractor, if you have a problem or ailment, you go to them first, and then they refer you to the appropriate specialist, and in most cases you can't just go to the apecialist without going to your PCP first! But the problem with that is, Pain for example, if you experiencing severe pain for some reason, and you can't get into your Pain Clinic or Pain Specialist, going to your PCP is useless they usually don't know how to adquately deal with your pain, and because your under the care of a specialist they usually don't want to treat you anyway. I know my PCP alway recommends going to the ER for everything, I did that once, I called my PCP, expained my problem and was told to go to the ER, I sat in the ER for 5 1/2 hours before I was even seen, and then finally got my BP and Temp taken and was put in a room, I sat for another 3 hours, and then was told it would be another 3 to 4 hours before the Doctor would see me. It wasn't because I left! I had told them that I was 3 hours past my sheduled meds, and they said that was alright, because the Doctor doesn't want you to have the meds till after he has seen and evaluated you anyway! They acted like it was no big deal, but for them it wasn't!
People with CP are not taken seriously or treated properly by most in the medical community. And I resent that! It is not fair that people with CP are treated like Criminal Addicts! I have seen and heard nurses say and I quote " that patient isn't in pain, he/she just wants to get high!" One particular patient had CP because she was misdiagnosed previously and ended up having terminal cancer! Her pain was not taken seriously, they thought she just wanted drugs! Because since she had a previous history,.......she was unfairly labeled, and thus did not get adequate treatment, when she was finally properly diagnosed it was to late, and even then she still did not get adequately treated for her pain! It aggravates and frustrates me, because this goes on all the time! fatherjohn you shouldn't have to suffer like that, I know and understand why you do, but it's not right!
I do wish you well!
I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!
Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, 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
Bluejet2, Thanks for your reply. You state that I am good at hitting the nerve. I guess that is because mine are so well exposed due to CP. I try and bring up topics that I deal with on a regular basis. I constantly look at what demands my attention and uses up my energy on an ongoing basis. It sounds like you know very well that addiction to prescription drugs is a major problem in our society. Becasue there are no clear tests for a doctor or pharmacist to use to separate those who really need the meds and those who neglect and abuse them. Time will help differentiate but like you said, they just more on to a new doctor and get what they want. There also are those who sell their prescription drugs and there are plenty on the streets for people to feed their habit.
PALady, I believe this is one of the ways that I deal with the anger issues of countertranference. I do inventories on a regular basis and if I find that I harbor feelings that are unhealthy I deal with them. At times, I have several men that I trust and they help hold me accountable. They don't understand the complication of CP but they keep me on my toes. I also have my wife who knows me very well and is not afraid to carefront me. I say carefront because one thing I teach is we should care enought to confront others in a loving way. That does not mean I have it all worked out. The work issue is also complexed. I am supposed to hire but the money is not there. My superiors know that I am stretched but I do everything I can to hold this place together. They also know that if I were to leave, they probably would not find someone who will come in and do what I do. Working with those who have come out of Drug and alcohol abuse is not easy, very demanding. I have thought about changing jobs but with the CP issue, it is difficult to look at a change. Boundaries, yes that is an area that I neglect. I am not a workaholic but a ministryaholic. The difference, how I try and justify why I do what I do. I understand that my work schedule probably is not helping my CP. I also know that I am not going to be able to keep this pace up for much longer. By the way, it is Sunday and I only worked in the office for 5 hours today. I am planning on running away for a few days with my wife. I think later this week we are going to the Oregon Coast for a little solitude and personal time. Anyone want to hold me accountable?
Char, Maybe I will look for a job selling those little umbrellas for drinks. I know on our virtual thread we seem to go through alot of them. I know that I work in a controversial field. When you add to it that it is a faith based program that is based on donations, it can take on a whole different view. When I go out and speak about what we do, people are amazed because almost everyperson knows of someone who is either directly or indirectly effected by addiction. If our staffing level was where it needed to be it would be better, But in order for the staffing level to change the income needs to change. Looking at financial issues in this economy is overwhelming. What a vicious cycle.
Kello~Kitty, You are so right about trying to open clinicks or treatment centers. People know we need them but the attitude is "but not in my community." I have stories that I could tell about opposition to our program as well as others connected to it. I have been very careful not to divulge the name of the recovery services program that I am working with (not a small organization) and we are trying to open new centers all the time. My job is to help train staff for them. Unfortuantely, there is job security in this business. The economy we are in does not help as people want to escape and many times they do it through drugs and alcohol. That effects us with CP because in some peoples minds we are an extention of those who are identified as addicts. Addicts use drugs so people that use drugs are addicts. For some it is a compelling argument but not a true argument. It is even prevelent in the program I work in. Not everyone in our program (my superiors) like the idea that I am on medication for CP. Now that my PMS is looking towards putting me on methadone, if that gets out, my job could be at risk. If they ask me I can't lie. So please no one tell them. (joking of course). I hope you find the satisfaction you are hoping for in this field. It can be very rewarding and also very draining. Thanks for your post.
I fully understand the abuse of the system.
My father! He has medical issues but since my mother died he has went out of control. Hes 70. He was getting pain medication for the VA and a PM doc at the same time. The VA found out and cut him off. But he still sees his PM doc. He gets 150 30mg morphine tabs and turns around and sells them 20 dollars a pop!
Here I sit with many medical issues. My referals to a PM (2 one from a Nepherologist and one from my PCP) I am taking lortab 10's 3 times a day to get by on until I see a PM doctor. I have struggled to get this referal. All my dad did was walk into the clinic (he took a friend to his appt.) tell the doc hes been buying off the street and he took him on as a patient. When my dad runs short from selling them he comes to me. I always tell him I can't. I really can't if I give any to him I will be short and cause me pain.
He receives 1500 a month is social security (mainly my mothers after her death). He gets free medical care. I on the other hand have to pay 20 dollar co-pay and 15 or 25 for prescriptions. (I take 19 medications a day) I'm afraid I can't even go to the PCP for my refill on pain medication because payday is not until Friday. Our household income is suffering do to cut back in hours at both our works. But my dad seems to just float through the system without any concerns.
I posted a similar thread a few months ago and got such a response...Some of it I did not expect... This is a touchy subject for CPer's. We aren't addicts but are treated as such. I had to force myself out of that mindset and I am so glad that I did. I now have a better self-image and don't let what others think get to me like I used to.
If it wasn't for this Forum I couldn't have done it. So, thanks everybody...
We are all in the same boat...unfortunatley it seems like it's sinking...
Post Lamenectomy Syndrome
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed
Metformin 500 mg. once daily