Reflex Sympathetic Dystrophy Support Group

Hi Rev,

Thanks SO much for your knowledge regarding the psych. tests. I didn't call them today. I've had a really bad day and couldn't deal with it.

I have done everything about disability but I do not qualify. I even wrote to my Senators hoping that the law could be changed a bit, but that's not going to happen. One of the Senator's office ladies did check in with my information for me to see if there was any way, but no. I have checked and it is absolutely true that I don't. I can't remember the details right now. I'm having a really bad day & night, but have no worries about me and SSDI because it is absolutely true that I do not qualify.

Thanks for caring enough to suggest it.

gail

Gail what makes you not eligible for Social Security? Can you not get SSI at least?

Hi snoopyemt,

Sadly, I do not qualify for anything for several reasons. My income is too high for many benefits and I don't have enough work credits for disability. I was a stay-at-home mom for almost 20 years and then took care of my elderly parents, so I had no paying job. I will qualify for Social Security retirement under my now ex-husband since we were married over 10 years (23) but that won't help me now. I had hoped that I could apply for disability under his work credits but you can't. My monthly income is too much to qualify for assistance but not enough to make it once I pay for my health insurance because it's so high. I could SO use the help and am sort of resentful because those years that I didn't "work" I actually worked my butt off for free at our church and my kid's schools. I ran fund raisers and taught Sunday school and Vacation Bible school every year for over 10 years. Plus I helped start a private school my kids went to and did everything from painting walls and having garage sales to working in the office, choosing the uniforms, etc. For years. I just didn't get paid for any of it. And now since I didn't get paid then, I can't get paid now.

I actually really worry about others who don't realize if they stay at home to raise their children and something happens to their marriage and then something happens to them physically, they are in BAD shape with no net under them. No one thinks this will happen to them but it does. I do have an income, though, so I am OK... just not great.

gail

Oh Gail I feel so bad for you. Rev is right about the psych evaluation. You would know if you had one. You can also go to one of his partners and explain you feel like you don't get time to talk to the other doctor about what is going on with you. I only have to go once a year by law or I can see my doctor when I want. I only pay $20.00 co-pay. You need to get a new doctor. There are some regular doctors that know as much about RSD as the pain doctors do. I go to an Internal medicine doctor. He knows all about RSD and all about different meds. I have Blue cross Blue shield Dreyer medical. Meaning all the doctors I see are from Dreyer unless they can't help me like when they sent me to U of I. There is a pain doctor in the Dreyer program but as of now I have tried everything but the ketamine. My doctor always says if I want to go see him just let him know but when we look at my chart there is nothing left to try but the ketamine. Please try and call one of the partners and see how it goes. Before the doctor I have now was a Dreyer doctor and we both agreed that I needed to see someone else because he refused to do anything.

I wish you the very best and will be praying for you!!

Many gentle hugs, Cindy

Today I have encountered the non-sensical bureaucracy of the medical world.

I have been trying to get into a (FREE (except for the initial consultation fee)) research study to determine the possibility of Transcranial Magnetic Stimulation as an effective treatment for CRPS. I managed to get the referral from my GP and all was looking good until the clinic doing the study had to contact my local board to get funding for the initial consultation.

The cost of the initial consultation was rejected by the board. Interestingly, this board is refusing to pay £200 for an appointment to get me into a study that would otherwise cost my local board nothing for all further related treatments. Additionally, if the treatment is effective, it could minimise or eliminate and further costs that my local board would have to incur in order to treat me.

Curious economic situation: Suppose each member of the board earned £100,000/ year (assuming that they are high-ranking and perhaps medical doctors. They earn £48.07/ hr. Suppose there are 5 people on the board and it took them 1 hour to go through 3 1/2 years of my medical history and debate the merits of funding a consultation for a treatment. The math for that is: £48.07 * 5 * 1 = £240.35. So, with the above assumption, they have already paid more to reject the fee than what the cost would've been. Even if there were fewer people, they earned less, or they debated for 1/2 the time, they still would've spent 1/2 of what the consultation fee is.

I'm currently working on seeing if the clinic will take a payment directly from me.

Hi Cindy,

You know what? It means so much to me that you care, and I mean that. Unfortunately the office where my pain doctor is has VERY strong rules and you are told that you either WILL follow the rules or you will be released (fired) as a patient. One of their rules is not to change doctors within the practice (there are 3 there). If I called one of the others, first the front person would NEVER put me through, but my doctor would be told and I would be fired and without any way to get medications.

The state has made the laws concerning pain medications stricter and stricter over the past few years and as of January many things changed which is why I have UA tests more frequently. My primary care physician told me several years ago that she doesn't prescribe the kind of meds that I take (or you take) and I would bet very few if any primary care physicians here will do that. There are just lots of hoops that THEY have to jump through now, too, then they make the patients do LOTS of things to be certain that they will not ever lose their licenses or worse. What has happened is the patient is punished because of what the drug addicts do and what those who divert the drugs do.

Cindy, thank you for caring and for your prayers. I'm thinking that I should talk to my primary care physician in private at an appointment and ask her for advise. I don't know if she'll have anything to advise or not.

Hugs,

gail

Hi fim,

That has to be so frustrating! Maybe even infuriating! Common sense just leaves the building sometimes in these decisions. I wish I had a great suggestion, but not even knowing the ins and outs of your system, I have no ideas. I do hope you can get it, if by paying directly yourself for it, maybe it would be worth it. Good luck!

gail

Gail,

I know the meds that I am currently taking took a few weeks to get the pre-authorization from my health care provider, then took a week or so for the pharmacy to get the script filled. But my pain Dr also provided me with a coupon, because the cost was so very dear, I also contacted the company to ask for assistance. Have you ever tried reaching out to the pharmacitcal company for help paying for some meds? I have been home for almost 3yrs and collect LTD, still waiting on social security to be approved. I worked solely for health care and my monthly check from LTD goes right out for health care. So I have reached out in every way I can to get help. I so hope your situations gets better! It's not bad enough that you suffer with the kind of pain you have but the other pressures in life put so much more stress on you which in turn just masses the pain even more!

Take Care Gail!

Barb

HI Barb...why did it take so long for you to get auth???? and then to get your meds.... just wondering ... I thought it was like law that the insurance companies had like only.... 72 hours to respond to authorization request... so that you could appeal it in a timely fashion....if they denied it.... And as for SS are you using a attorney to get your SS????

Also for money help with meds have you ever heard of the "Healthcare Foundation"?? They have helped me in the past with meds when I could not pay for some very expensive meds.

Hope I am not being to personal.... just wondering... you do not have to answer if you don't want......

Craig

Post edited by: Fletch2ya, at: 07/14/2012 09:23 AM

Thank you, Barb, for kind words and good ideas. Actually I understand your situation so much because so much of my monthly income goes straight to health insurance! And, the past two years the price has gone up so much that it took out a little "wiggle room" I had where I could pay someone to get groceries for me or something like that. I actually did that today out of neccesity. The pain has been insane this week and today I woke up with it bad, which is abnormal and a very bad sign. We did just have thunderstorms come through here a while ago which I'm sure added to it some. I simply HAD to pay her to go for me because I couldn't do it.

Back to your questions, I have not asked the companies for assistance. Fortunately since I do pay for health insurance (through our state's "risk" pool) I do have RX coverage and so they aren't too high. I have a couple of them that are under $10.00 and only two that are $25.00 per month. My pain cream would be much more than that, however the pharmacy that makes it for me does send it without cost to me, they do bill my insurance company. They have a hardship program and I qualified which was a real relief. The thing about my prescriptions is that I take 8 of them, six due to pain, and it adds up to buy 8 prescriptions. Thankfully, it's a bit over $100.00/month right now total, which is a LOT, but once my pain doctor put me on Opana XR which cost me over $250.00 for a month! I had to actually put my foot down and tell him that I could NOT afford it even though it did work well. That's hard to do when you find a medication that really makes a difference!

Thank you for the ideas, which I may try and will let you know what happens if I do!

gail