So I want to tell you guys about a program I entered last summer. It's at the Walker Building on the main campus of Cleveland Clinic in (duh) Cleveland. It's called the Chronic Pain Rehabilitation Program. It changed my life. It's changed the lives of many people.
This is an intensive program that goes for 3 to 4 weeks, Monday through Friday, 7am to 5pm.
The biggest question I get from people is what do they do there? They have you see doctors to adjust medication while trying to find the right combination for you, there's physical therapy, occupational therapy (learning the correct body mechanics to push a grocery cart, garden, do laundry, cook, clean dishes, etc), and a lot of forms of counseling (one on one, group therapy, assertiveness), and they help you get off the serious pain killers if you are addicted to them.
Seems like a lot huh? Seems almost impossible for someone who is in so much pain! But it's really not. I will admit that sometimes it did feel like too much, but each day seemed better. I think I got the most help from the various psychotherapies. But they taught me a lot. I went in very depressed, very ready to be done with life.
What they taught me is that it's okay if I can't do things like a normal person. It's okay if I am disabled. It's really about living life well. It's about enjoying the life you have, enjoying the people you share it with, and enjoy just being yourself.
I have my disability now, and as sad as it makes some of the nurses and doctors there when I tell them, they helped make it okay for me. So I'm disabled. That doesn't mean I don't have a fulfilled life. I do. And I wouldn't have known that I could if it weren't for them.
I highly recommend the program.
I have an appointment in April to be evaluated for this program. I am very depressed and my pain has prevented me from being able to enjoy life anymore. I was so happy to find someone who has gone through this program. I have some questions about it if you don't mind?
ReplyDeleteI don't mind at all. Ask away. :)
ReplyDelete1. Were the staff and doctors nice/understanding? I don't do well when people do the 'tough love' thing.
Delete2. Were you on any pain meds going in there? I'm on Oxycontin & Vicodin, and I would LOVE to get off of them. It is VERY scary to me though HOW they can decrease and stop them and you wouldn't be in a lot of pain. But I don't think they really help me much for my nerve pain anyways...
3. Did they stop your anxiety meds? I've been taking Xanax as needed for years, and I know a situation like this will make me very anxious.
4. I'm from Pennsylvania, not Ohio, so where could I stay?
5. You said the day is from 7am-5pm - how much of this is exercise? Counseling?
6. What should I wear? Exercise clothes?
7. How many people are in the program at the same time?
8. Do you plan to have kids at all? Is there a way to have your pain controlled and be pregnant?
Sorry for so many questions!!!!!!!
1. Yes they are. You have seen many people go through with pain, and they really try to do what they can to help.
Delete2. No, I wasn't, but many of the people I knew and became friends with were. And when you go in, many of the people you'll meet will be dealing with going off the meds too. From what I remember from medicine check groups, they tried to take you down as slowly as they could while also trying to give you non-addictive medicine to take to deal with the side effects.
3. Yes, they did take me off of them, but they did it very slowly. One of their goals is to get you off of all addictive substances. They might put you on a small dose of another anxiety medication to only be taken when you have an anxiety attack (that's how they dealt with my anxiety medication eventually. "Only take it when you need it.")
4. There's a comfort inn on the corner of Euclid Road and 18th street. They give you a special low rate if you are in the program, and there is a shuttle to and from the clinic every day for free.
5. You'll have exercise every single day. Same with Occupational Therapy (which is about how to do household chores, driving, using a computer, etc the correct way to put less strain on your body). As for counseling, you'll probably have maybe about 2 to 3 personal sessions each week.
To add to that, they also have medication checks (with the doctor and that's when any med changes, or updates are done), but I forget if that's every day, or 3 times a week. And there is a group counseling session every single day.
6. Wear something comfortable, since you'll be there all day. Doesn't have to be exercise clothes. I just wore yoga pants, and comfy shirts. On two of the days (Tuesday and Thursday I believe) they do pool therapy, so you will need a bathing suit, and sandals that you can wear while walking from the changing room to the pool, and then back again. And a towel. Some of my friends just wore the bathing suit under their clothes during those days, but I just kept them in a bag and changed there.
7. It's usually about 15 to 20 in at one time. But you'll be split up into 2 groups (might be 3. I don't know when they were planning on starting up group C). So more than likely, you'll be spending most of your time with about 5 to 7 people.
8. Yes, I do. My doctors have told me there are some medications they can put me on that won't hurt the baby, but I've also heard a lot of people say that their pain was actually a lot better while they were pregnant. Something with the hormones, I think.
:) Always happy to help people. I wish I'd had someone to talk to about it before I went in, so I'm happy to answer any questions you have.
Hello there! I havean appt on tuesday for as assment! I dont have a job! Every doc I see is covered By a thing called Hcap! Its like gov program! My question is! Do they make you pay for your own food and lodging??? I have nerve pain in my face what could they possibly do for me?? I am so tired of the med. meurontin! Please answer if you know! thank you Sally b
DeleteUnfortunately, yes they do make you pay for your own food and lodgings. There is a comfort inn on Euclid though that gives you a discount if you are in the program, and there is a free shuttle that will take you to and from every day.
DeleteAs for what they could do for you, it's hard to say. For one I think they'd probably send you to one of the specialists they have at the clinic, along with trying different combination of meds. I don't know if the PT people would know of any facial exercises to try.
Thank you so much Emi! You made me much less nervous now. My pain keeps getting worse so I'm eager to start the program. Was your fiancé able to visit you during the week and/or did you go home on weekends? Are there places to eat dinner?
ReplyDeleteI went home during the weekends, because the cost was just too much, but he did come up to Cleveland for family days (which is every Friday) and they had us talk to a counselor about how to deal with having pain in a relationship.
DeleteThere's a lot of places. There's a couple down near the Inn, a bunch right in the main campus building of Cleveland Clinic, and then there's Little Italy right around the corner if someone can drive. That's what me and a bunch of the girls in the program did after the program a couple of nights. The pasty shops are to die for.
I came across this post when I was looking for reviews of the program. I wish I had read some reviews from actual participants before I came from out of state to attend the program. Unfortunately, all I knew prior to attending was what the Clinic published. I myself got kicked out of part of the program because I wasn't responding in the way they believed I should to the tough-love part. One may be able to benefit a lot from this program, and I encourage you to try it, but do not be discouraged if it does not meet your specific needs. Good luck on your journey, no matter where it takes you, Cleveland or otherwise.
ReplyDeleteHow should you have responded? Were you fighting it?
DeleteThe program is designed in the same manner that Ford created the assembly line for automotive production. I was extremely disappointed in the uniformity of tratment. I have experience with medicone and this program is designed to maximize patients with the most efficiency to recover the most from insurance or other provider reimbursements.
DeleteI'm hoping you're still around to respond, Simone. You say they kicked you out of PART of the program? Did they still let you do the rest of it? I don't do well with "tough love" either--it doesn't seem like they address individuals very well to know that some of us don't need to be verbally abused for something we aren't even guilty of before ignoring us. Seems more like a discouraging abusive relationship, to me. Jiminez seemed like a sociopath, and I didn't know if it's because he had a bad day or if he's actually just evil. I actually couldn't tell if I was being gaslit or not, so I'm trying to find reassurance to not be scared of the doctor and try. I hear they help with biofeedback and guided imagery which I already do but could use help with.
DeleteI was "kicked out but not banned", in other words they were more than glad to take more money from me at a later date when the program might be "more appropriate for my needs". You are being gaslit. My docs there did not care. They assume you are not there for pain rehab but are mostly a lying, scheming addict trying to live off of government aid and get opiates, or so they heavily hint then stare at you with a heavy pause. I was accused of opiate withdrawl, and my fiance asked how my opiate addiction/withdrawal made him "feel" on family day in the therapy for family only and no patients just based on the fact that I was having trouble with vomiting. Well as he tried to explain, I have gastroparesis and was having trouble getting my med for it, and I have a life threatening allergy to opiates. Almost failed my kidneys when I got my tonsils out as a kid. They just try to Pavlonian you into certain beliefs and minimize so called "pain behaviors" in therapy. I protested when they treated someone terribly and was kicked out. One very sick girl would faint and I would touch her shoulder to wake her because sleeping in group embarrassed her, she asked me to, plus sometimes she would slump so far her head was dangerously inverted, they kept saying to just let her pass out and sleep bc we must all deal with the consequences etc. And not "enable". Enable what in that case? I was gone once and they had staff drag her chair out with her in it instead of just waking her. She was very upset after. Messed up.
DeleteIn physical therapy they defraud the books by limiting what you do only on measuring day. Ex. They have me do bare minimum the first day, say 2 pounds, then they let me do what I can all week and it's 12 pounds. The day a week later for official measurement comes and I go to get my 12 pounds and no no, I am not allowed, I suddenly "shouldn't push myself" and should only do 3 pounds. I say that's nuts I've done 12 all week and this part is not a problem for me, but the most they allow is 4. This way they start bare minimum and limit progress until I'm at what I can already naturally carry but it's in a nice line graph that it's increased by six times thanks to the Cleveland Clinic.
Summary: if you are a malingerer this will cure you. If you need help getting off drugs and are actually an addict but also need help with pain it could help. If you are an independent thinker who doesn't like feeling belittled, tricked, fooled, ignored, disbelieved, discounted, and treated like a liar it won't work out. If your case is complex it won't work. They manipulate and try to get you to divulge "trauma" in group. If you don't, they start saying how maybe the program isn't for you. Somehow they brainwash people so this scares them. As soon as they give up some dark secret and cry in front of group the shrink gives them praise and picks the next person to start threatening to kick out. Worst of all, the meetings with docs were GROUP MEETINGS. With other patients. I cannot even. They adjusted doses or talked about patient A's sex drive or gave an antibiotic for patient B's UTI right in front of 10 patients in one room. Unless desperate, malingering, or addicted, beware. This program is a wolf looking for easy prey and insurance payouts.
I start the program Monday, and I am READY to get my life back. My options are give it my all or be at home on the couch all day in horrible pain. I can't give up! I'll let you know how it goes.
ReplyDeleteKaylan, I am in your exact shoes. How did the program work for you?
DeleteKaylan, I am in your exact shoes. How did the program work for you?
DeleteI just returned from my "assessment" yesterday and was told I could enroll in the 3 1/2 week program....so now I am trying to do some research about the program
ReplyDeleteI am pretty skeptical and would love to hear from some other previous patients.
Emi, your story provides hope. Thank you for your blog.
ReplyDeleteMy wife has been suffering from severe low back pain, sciatica, and foot pain for over 9 months now. We learned of the program during a visit to the Clinic a month ago for yet another "2nd opinion". I am trying to convince her to enroll in the program as all other therapies / injections, etc. have not provided any measurable relief. As I am sure you understand, the cycle has resulted in depression, sadness, and anxiety to boot. Sadly, I don't believe there will be a true 'fix' to her pain so I believe we need a holistic approach to coming to grips with her situation, managing the pain, and begin living life again. She is very hesitant to go as we live over 2 hours away from Cleveland and have 2 children under 10. What advice can you give me to help convince her to go? All the best, Donald.
I would tell her that you understand not wanting to be away from the kids, and that's joining this is really scary, but in the end it will be worth it because her life, and the kids' lives, will be better for it. There may not be a cure, but this has the chance to give her some of her life back, and that includes both life with you and life with the kids.
DeleteI hope she's able to get help to manage it. I know it's really, really hard. We have to try to learn to live life as best we can, and to just try and have fun and enjoy the little things.
Thank you so much for the kind words and guidance Emi.
DeleteI have one other question for you - my wife has been taking Neurotin but it has not provided any measurable relief. She is being phased out of that and switched to Lyrica to give that a try. Have you had any experience with either? And also Cymbalta? Thanks very much
I've actually taken both. I take them both right now. Cymbalta has helped with a lot of the small aches and pains, along with some of my depression, while Lyrica has dampened a lot of the really bad pains. I can barely handle the way my neck feels on even just a lower dose of Lyrica (300mg vs. 600mg). I've heard Lyrica can make you sleepy for a while, though it never occurred for me. It's also great for helping migraines too; not sure if your wife has a problem with those. A lot of these problems kind of go hand in hand.
DeleteThanks for the reply. She just told me she is worried about weight gain on Lyrica (she actually lost weight on Neurotin and cannot put any weight on) but would trade a few lbs for some releif of course. Guess we will just have to wait and see....She fortuntately does not have neck or migraine pain but is really really depressed today due to the back and leg pain. and the feeling it will never get better at age 37...
DeleteI know that feeling well. And it's such a hard feeling to pull yourself out of. I truly hope the doctors can figure something out for her. If she ever needs people to talk to about it, I'm always free.
DeleteI JUST HAD MY ASSESMENT I HAVE NEURAPATHY IN MY FEET AND LOWER LEGS. THEY WANT ME TO JOIN THIS PROGRAM. I AM SCARED I CAN'T SEE BEGING THERE ALL DAY IS THERE REALLY THAT MUCH THEY DO? DO YOU GET BREAKS. IS THERE PLACES THERE FOR LUNCH?
ReplyDeleteYou generally have a couple of minutes to go from one thing to another, but there are a lot of classes which means more sitting and resting. I was really, really worried about being there all day like that too and that it would be too much, but it really isn't.
DeleteThere is a cafeteria for lunch. Those that are daring go over to places like the Crile building for some of the food there, but I just ate from the cafeteria everyday. They have a lot of things.
I DON'T FEEL I NEED TO SIT THROUGH CLASSES TO DEAL WITH MY PAIN I JUST DON'T SEE SITTING AND LISTENING TO PEOPLE ADDICTED TO DRUGS. OR WITH BACK PAIN THINGS THAT HAVE NOTHING TO DO WITH WHAT I AM GOING THROUGH DO THEY TRY AND PUT YOU IN GROUPS THAT ARE DEALING WITH WHAT I AM DEALING WITH WHAT IF I AM THE ONLY ONE WITH THIS PROBLEM?
ReplyDeleteI found some of the classes very helpful, along with the PT and OT. They split the groups up into 2 so that the addicts are in their our group. You are likely to be with people who have similar problems to yourself.
DeleteDOES IS TAKE THE FULL THREE WEEKS? WHAT IF I CAN'T MAKE IT ONE DAY?
DeleteYes, it usually does take the full 3 weeks. Just take it one day at a time, and remember that the first day (the intake day) is sooooo different from the actual program.
Deletethat was so helpful to know. I really didn't want to deal with a bunch of addicts, either.
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My wife is in this program now, and the transformation after 4 days has been amazing. There is another person in her class who arrived the week before us, walking with a cane. One week into the program, the cane is gone. The patient must come into the program willing to give it their all and have no resistance to the methods that are taught and practiced. That's what my wife did, even though she was apprehensive. The nurses and physicians want you to succeed, and they are going to treat you in a way that has been proven through years of experience with many patients. We are fortunate to have good medical insurance and money to cover the travel from Alabama. However, if you have limited resources, the benefits you will gain from this program are worth spending your savings or selling a car for - that is not an exaggeration. After 4 days, my wife sees that she will have her life back, and I have her back.
ReplyDeleteI just returned from my initial assessment at the pain program with the Cleveland Clinic. I was told that I would only bd admitted after I dropped my litigation with my employer for disability discrimination. ? Did anyone else get this information?
ReplyDeleteThat was not an issue I was going through, but I will say that that is really messed up that they would do that. I know they weren't happy about my disability application but the reality is that this shit happens, and not everyone can walk out going back to work.
DeleteI'm very saddened to hear they did this to you, and I don't think it's fair at all.
they asked me questions about lawsuits, and I don't have any--but that was surely odd. i can't participate yet because we have to get my narcolepsy/apnea, etc. sorted first--but I told him that I have to see sleep med to get on appropriate meds and the first thing out of Jiminez's mouth was that they'll take me off them. They're just weird.
DeleteI have not entered this program, although I have been screened and approved to begin if I decide to do so. On the subject of neuropathic meds such as Lyrica, Cymbalta and Savella. I have tried all 3. With Cymbalta, I took one pill and spend the entire night with dilated pupils, vomiting, rapid heart beat and anxiety attacks. With Lyrica, after approx. 2 weeks, I got up and baked cookies in my sleep...a few nights later, I was seen by my neighbors, driving around my neighborhood at about 4 am with no memory of doing so. With Savella, after about a week, I started to have nightmares and was waking up with hallucinations. Be very careful with any type of neurological type medication!
ReplyDeleteEmi... I'm late to the game, so to speak. I see your original post was a couple of years ago. I am a Pain Management patient at Cleveland Clinic for past 10 years. I have undergone nearly ever treatment protocol for my chronic neck pain (failed post laminectomy-cervical) and complex migraines, including RFA, SC stimulator implant, facet block, etc. I am on morphine, Neurontin, Venlafaxine, temazepam, zolpidem,,and zanaflex. Also, get Botox injections for migraines. Still have moderate pain every day, with some severe days "to change things up a bit.". My doctor says that the only remaining hope is the Pain Rehab. Program. I currently do the physical therapies I've learned over the years, as well as have seen psychologists and psychiatrists for the depression aspects of the disease. My biggest fears about the program are increased pain levels and withdrawal symptoms. One of the first things my doctor tried was to wean me off the opiates I was previously prescribed. For two weeks I was in terrible pain and experienced horrible withdrawal symptoms. During that period, I was in my doctors office 4 times being told each time it would get better, but it didn't. After that period, my doctor determined that the medication was truly needed in my case. The experienced left me to the point that if my medications get delayed, I get in a panic and start 'wigging out'. I truly would rather die than to go through that again.
ReplyDeleteAdditionally, my blood pressure sky-rockets whenever my pain levels rise - despite the 2 b,p, meds, I'm on. Recently, I had a partial TIA, which has added to my fear of the C P.R. program.
Can you speak as to my concerns ? I really would appreciate your insights in helping me determine if I want to take the chance, as well as go to the expense of the program. I have gone to talk with the doctors at the program, a few years ago and they told me I had a 50-50 chance the program would help. But I had those same odds when I had the neck surgery and look where I am now.
Thanks for your insight,
Bonnie K.
This comment has been removed by the author.
ReplyDeleteI plan to start the program but I don't really see how it's going to benefit me. I'm not on narcotics, I've had Occupational therapy, Osteopathic, Chiropractic, Water therapy, Physical therapy, Acupuncture and more. My biggest issue is low energy and sleep. Pain interferes but it's manageable. I have a problem with it all being so intensive. Fibromyalgia sufferers have an issue with Post External Malaise. I so appreciate being able to get a little insight here.
ReplyDeleteReally I am impressed from this post....the person who created this post is a generous and knows how to keep the readers connected..thanks for sharing this with us found it informative and interesting. Looking forward for more updates..check out Pain Clinics In Las Vegas for more information..
ReplyDeleteHi All, I am from Cleveland and my wife is suppose join this program soon. Can some one give me an idea about the total cost for this program - out of pocket payment for this program.
ReplyDeleteThanks for this blog
Thanks
Rabi
Hey Rabi,
ReplyDeleteI can't answer that question, unfortunately, but am wondering how long it was between your wife's assessment and when she began the program?
Thanks very much,
Amanda
Hey Rabi,
ReplyDeleteI can't answer that question, unfortunately, but am wondering how long it was between your wife's assessment and when she began the program?
Thanks very much,
Amanda
I'm wondering (if you're still responding to questions) if
ReplyDeletea. what do they do with patients who are still waiting to have problems evaluated--my rheumatologist told me to wait and don't overdo it on days that my joints are swollen while we sort out what's causing it (it can do more harm than good) and b: we don't know what is going on with my hands/feet--some of them turn deep purple when I ignore my body's "stop" signal and I'm still waiting for someone to put in writing that I'm not going to be doing more damage by using them after they turn dark blue. Do they refer out to appropriate specialist, or do they ignore that?
b. do they actually cover the brain map for how pain in the brain turns chronic? I've managed to ignore most of my major issues by myself, though apparently I messed up a bit over time limping through my sciatica. I hope they actually do this--no one there will answer my questions.
c. Jiminez said they'd be taking me off the wakefulness meds I'd need to be able to show up and not have problems--are they more flexible? He had a really bad day when I saw him, so I don't know how dramatic he was being while he was taking his bad day out on me.
d. what do they do about managing fatigue? Some days my fatigue is he more central factor and I'm fighting all the causes to get my life back. The way it was presented to me, they essentially ignore the fatigue (and clearly won't allow you any medications from other doctors to deal with it.)
e. what exactly is this "tough love" that the other responder mentioned (the one that got kicked out...) I won't tolerate abuse, and I'm not an addict, so "tough love" isn't even warranted here. So if you could explain that aspect, I'd like to keep an open mind.
f. Dr. Mileki told me I had to "stop asking why." Do they actually hear patient concerns about causing further damage and address them or do they just bully? Not being allowed to ask why my fingers turn blue and if they're going to be damaged seems medically dangerous, and I the majority of my injuries and disability are from doctors already.
Thanks for any insight you can lend. I don't want a bad encounter with one doctor to determine my choice. It'd be so nice to get past this fatigue already, so I'm hoping they have methods of dealing with patients who have low blood pressure and chronic infections.
oh, I also need to know if you noticed anyone showing up with a best friend or close coworker rather than family? They're adamant it has to be my brother, but I can't afford to pay him for missed time off and he could lose his job if he requests more than one friday off. (he also already said no simply because he's dealing with emotional turmoil from my mother dying. I haven't even had time to mourn because of the fatigue and the bad hands and feet they won't look at,and struggling to stay employed due to coginitive decline.) My best friend and my boss said if they had to they could figure out tag teaming fridays, but the doctor said no. I don't understand that. Sometimes our real family is the one we choose. Did you notice ANY flexibility?
DeleteI would say that they might not accept you during the process of trying to figure things out, though I could be wrong. They let us still explore some of our issues, but if some of yours could limit things, they might tell you to wait.
DeleteNo, they are very much not joking about taking you off the medication. They will take you off a good portion of your meds, and they will treat you as combative if you try to raise concerns about any of them. There were actually quite a few people who were put through the drug addiction side of the things they really didn't fit into that because they assume those who have used opiates are automatically addicts. No exceptions.
And no, I don't think they will budge on the family thing. The only ones they allowed that weren't related were people who were married or those who had no living family and they were people they were living with.
Since my time away from the program, I've actually had a lot of time to think on things, and the way the program worked, and I can see a lot more problems with the program than I originally posted about. They have a lot of issues in them believing that only their way works and not being flexible at all.
It's a good program in that it taught me some really important lessons, but it also had a lot of problems in it. I wish they had learned from some of the people who had issues with the program, but it looks like they haven't.
Gosh, Emi, your comments from March 2018 are really telling, and rather disturbing. I saw Dr. Jiminez yesterday and he was really nice, perhaps because he thought I was a really good fit for the program. But after I got home and read the pamphlet he gave me, I saw red flags. I did not know they'd expect me to dispose of my Tramadol upon arrival at the program. Their online information does not make it clear at all that they are so anti-opioid. In fact, it made me wonder if they receive funding for the program only because they remove opioids from the patient's roster of pain meds. I have no objection to finding an alternative to Tramadol, but I did not asked to be referred to the program because of a drug problem, and I certainly don't want to be treated like an addict because I use Tramadol responsibly to control pain. I will have to ask questions about this aspect of the program when the Program Coordinator calls me. I have to say, though, this is not sounding like the program I thought it was and that is very disappointing.
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