What Michele has been through is a perfect, although unfortunate, example of what this disease can do to a person. THis is truly an issue that must be identified and action taken upon.
Any ideas? Must an individual come to that point in order to recieve the medical attention and support they have needed? Must a person become so distraught that it leads them to take such drastic measures?
jode
Dear Jode, with the amount of money or Country spends on medical care, it is impossible to believe anyone should suffer (twice as much a other 'civilized countries), but we know from the posts on this small forum the examples of people who 'languish' alone, without proper help! I hope that we can do just a little bit to touch people on here, Michele, who is hurting and give support.
How can we help you Michele? What can we do, dear, to ease your pain just a little bit? I'd love to be able to put my arms around you and comfort you, but all I can do is write words!! Please know we are all suffering this morning with you and hope you contact us often. We are yur family, we are your friends. Lean on us!
Thanks for writing this Jode, we all need to know we are not alone anymore. I found that out in Feb. when I first found this forum, at 2 am, I'd be awake and my house was soooooo quiet, but I could sit here and write out my soul, share the pain .....the screaming pain, the stiffness in my hands, the swelling.
I'm better now, but you all got me through some rough times. Helped with the medication, the after effects, the fear of Remicade! , all that and every word helped me over a hump of desperation! I called my doctor, I called my family, but no one understood the shear terror of this RA pain that never ends.
Take care everyone today, and Michele if you read this please write back.
Lynda
Michele if you read this I am 100% behind you in getting you through this, I'd even be willing to get on a plane and see you . I have fought for years and been through a friend of mines depresion when Drs wouldnt take her seriously when she was ill. They told her that her problems were weight related.They werent and she eventually got the right medical treatment.
I have been very fortunate with the rheumy I have, and now my PCP, who is one of my rheumy's patients! But a perfect example is last year when my appendix burst and at first the surgeon in the ER was treating me like I was crazy. When I said I had hypertension (high blood pressure), he asked if I was in the medical profession and how I knew that word. From then on, he treated me like a drug seeker. Later, in front of me and my parents, he told the medical students (or interns or residents or whatever they are) that "here is a perfect case of a woman who appears not to have any real medical issues, but in fact the CT scan shows a serious problem". Um, duh! I think it is very scary, especailly for overweight women, that we are often not taken seriously by medical professionals. I think there needs to be some sort of system that holds them accountable. Existing medical malpractice laws don't adequately cover the problem. The doctor who failed to diagnose my burst appendix (different from the surgeon mentioned before), despite my then-fiance asking if it could be appendicitis, who sent me home to suffer with horrible pain and infection for the weekend, and caused me to have an extra 9-day hospital stay, gets to act as if nothing ever happened. I did consult an attorney who told me that a "missed appendix" is difficult to diagnose and they wouldn't take the case. Well, RA and other diseases can be difficult to diagnose, and we shouldn't punish doctors unnecessarily, but there needs to be some standard of care. Just very, very frustrated here.
Seems like it is the ones without good insurance or without insurance fall through the cracks and do not have knowledge of their health problem....surely Physicians are not that narrowed minded are they? My mother has numerous mental problems, and a few physical problems. She has excellant insurance but it strains her budget. After all her meds and all her insurance, it totals to a whopping bit over ,000 a month. Yep, unbelievable huh? THe physicians she has are cautious with her health and are wonderful. SOmetimes I think she is on way too many meds and too much fuss over this and that......yeah her knees hurt, one was already replaced and she is due for another next year as I try to balance her checkbook from all the cost. It is overwheming at times. My point is in all this.........why is it that the PATIENT has to suffer so? I know my team of docs do well with me but then again, no can see them cause no have insurance. jode I am also extremely fortunate that I have great insurance and money to pay the out of pocket (OOP) costs. Last year my OOP ran about ,000, this year it will be more. And my OOP is even limited by my insurance so that at a certain point, they cover 100%. (For example, my prescriptions were covered at 100% since June, but will reset in January). Yet I'm still suffering without finding the right treatment so far. I can't imagine if I didn't have this insurance and the ability to pay the OOP costs. And don't get me started about mental health care parity. Mental health care costs as much or more than medical, and isn't covered properly. I was just reviewing our monthly budget with my hubby and looking for ways to cut costs. I see my therapist every other week which is really critical to my health. It's even covered as out of network, but still costs me or more per visit. More than once I've considered stopping because of the financial strain. Again, I don't know how most people do it. I will be sure to count my blessings today. We should have a system on here that someone (or everyone) has a way other then email to get ahold of someone for this exact reason. or maybe someone in the US, someone in the UK and someone in Australia has numbers for those that are willing for those that live there. Feedback on that? People without insurance...don't get anything done. I am fortunate that my PCP has me on RX help otherwise I would not be able to take the minimal pain reduction drugs I do take. My estrogen patch is not covered at all only if I go to a pill form. Well I have been on this patch for too many years and have tried the pill form and it does not work for me. Menopause is hard enough as it is. THose without insurance fall through the cracks. The people with insurance have great medical care, wellness care and can have the proactive testings done. It is nearly impossible to qualify for SSDI or SSI in Michigan unless you have moved here from another country. Such is life. My 2 1/2 cents worth...... jode Hey Michele - I totally understand, totally. Patient abandonment - it's illegal, but they get paid to do it, and if you DIED, they might have given a settlement to your family. I am so sorry you had to suffer so to get proper medical attention. I totally understand, your story is my story as the joke around here for about two years was how bad did I have to get to receive a diagnosis and treatment? They sure tested alot and had emperical out of normal results, but my symptoms were obviously just from a depressed, drug-seeking crazed woman. Magic. Take care and glad you survived. It will get better. Take care ~~ Cathy PS There is nothing to do for health care in America, it's broken. You have certainly had your hands full Michele...so glad thatyou posted, I worried. Scary thing this disease and all it can cause. IF I did not have the support I did have when Mr. Fiance' and I broke up I am certain I would have died from the total devestation and heart break.......I did not so much want to end it all because my ex husband used to always scream at me on the phone that he truly wished I would die....after hearing that for most of your daughter's life, you get to the point where you just say to yourself...."no matter how awful things get, there is absolutely noway.....noway, that I am giving you that satisfaction". Then life changes as it always seems to without notice or warning and you have a different set of problems to deal with and in there somewhere life is gentler and you experience joy and happiness. jode I would have to agree, it can in some cases be the Physician, many have a predisposition and ideal of that person and they just go with that. I have been guilty of that myself when I saw clients and students when counseling, believe it or not some just came in to get attention, to gain referrals or to just annoy! You get to know these people and also who to swoosh out of the office and who really is genuine and needs the help. It is not a good thing but sometimes there are a few that pass through that you kinda already know are trouble ( or one gets placed on your list that is a troublemaker and /or whiner) and you have to deal with that person as well as you can. SOmetimes they take up way too much of your time and then you get behind...so I kind of can see that perspective and had always tried to watch myself on that. SOme Dr.'s are just arrogant asssssssses. Period. I am sure some patients are as well that is why it is so important for a good fit in Patient/Dr. relationship. As for me, I have been a patient all my life so I just do what they say and try to be a good patient. When you get a Dr. that is unfavorable, you move on. jode
I am detoxing at the moment, still! Its horrible. I was on SO many drugs and strong pain killers (oxy 40mg 2 times a day, xanax, zanaflex, ambien, the list goes on) They kept me sedated even after the ventilator was turned off because I had the dt's so bad. My thoughts are not real coherrant and I have difficulty sitting, sleeping, standing. I am wired and tired at the same time. The effects of the dt's can last 6 weeks or so. Its miserable. Most of us need our medications but PLEASE be informed and know what you are taking and do no take any more than absolutely necessary. This is hell!
Thanks for the warning Michelle. Hang in there friend.Well hunny, take your time! Someone is almost always here, so you just pop in whenever you need us!!
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