Friday, February 27, 2015

Chronic Pain, Illness, Medicare, Disability, Medicare Advantage Plans and the Government Telling Our doctors how to treat us as Patients! WE MUST stand up and make things CHANGE!!!

I didn't get to mention this yesterday due to all of the "drama" surrounding my pain pump ordeal, so I will mention it today. While my pain doctor was working to refill my pump, we began discussing Medicare, medications, insurance, etc. Come to find out there were some people that switched over to a different Medicare Advantage Plan offered by United Healthcare, which AARP endorses. Well, I did my homework for months before switching. I had the Humana Medicare Advantage Plan for several years, well in fact ever since I was put on Medicare. Here in Texas, someone who is put on Medicare "disability" before the age for retirement, has an extremely difficult time getting a regular "supplement" to Medicare. About the only way you can get your "Part B" and drugs covered is by taking a "Medicare Advantage Plan".... so that means you "give up" your regular Medicare benefits, and you take one of these... there are not that many, Humana and United Healthcare are the two main ones. So, that means your choices are very narrow. I worked for months checking out the United Healthcare plan before I switched on January 1st. I got online, added all of my doctors, added all of my medications... to see if they were covered. I also called United and spoke to a gentleman there, that stayed on the phone with me about an hour. We again, went through my doctors that I presently see, through all of my medications, including the Orencia. At the time last year, Humana did NOT cover Orencia. So, I had to get it through the pharmaceutical company, which we know is time consuming and full of red tape paperwork, for the patient and the doctors. I had finally gotten on it, but then at the first of the year, they wanted to redo all the paperwork. Well, after I jumped through hoops for weeks, calling them, finding out what they needed, faxing paperwork to my doctors office, faxing paperwork to the Pharmaceutical company, I come to find out that United Healthcare DOES COVER the Orencia. So, then I had to get the "prior authorization" again from the doctor, but after about 4 weeks of being without my medication, it was finally approved and in fact they sent me 3 months of Orencia. So, I don't have to jump through hoops, and should be good until next year as far as that goes. BUT, now we have an issue, that it seems the Orencia is not working. In fact Rheumatologist called me a week or so ago, and I had told him in an email that I was not better, so he doubled my Prednisone to 10 mg daily, which I really hated to do, but it sounded like it maybe a way to see if that would help the inflammation. Anyway, onto the subject at hand. As my doctor was refilling my pump, he asked me about my United Healthcare Plan. I told him it was one that that had told me they would take, so it was the one I chose. I was very worried about them paying for the pump refill. but, I guess it got approved. BUT, HE told me, that some of his patients that took out a "Unitedhealthcare" Medicare Advantage Plan policy, got a "new card" at the first of February, and that their pump refills among other things were NOT COVERED!!! He said about 20% of the patients on these plans somehow got screwed over, and now they can't get their pumps refilled by him!!!! So, when I told him about going to the Summit in March at the end of the month, he told me to tell it like it is, and tell them how badly they are ruining things for patients, doctors, and putting patients lives in the throws of jeopardy. It seems somehow they automatically "switched" some patients from the plan they thought they got, and then got new cards, and it was NOT the plan they thought they were getting!!! This absolutely has to do with Medicare, the Government, and also not just Federal Government but our State governments also. I should be able to get a "Medicare Supplement" just like anyone on Medicare, but here in TX, they "make you" almost take the Advantage Plan instead. Even though there are about 8 or 9 different types of supplement plans, all in letters like Plans, F, G, O, etc... and they are some more expensive because they cover more and some don't cover as much, so those plans are cheaper. None of them are "cheap" but then you are not dealing with many doctors who are refusing to take these (MAP) due to them not getting paid!!! He told me before there were a couple of patients he did very expensive surgeries on, like an implanted pump, and it took him over 2 years to get paid and then he had to go in front of a judge to get them to pay the bills. No doctors can continue to see patients and keep afloat financially if they are having to wait, 3, 6, 9 months or more to get paid for services!!!! It is crazy! So, he looked at my Insurance Card, and said I was okay. But, he said again almost 20% of the patients he sees are on these plans, and this one in particular they won't pay for the pump refills. Also, I asked well can't they just pay cash and have you refill them! He said as far as he knew and he does NOT know why, but NO, if those types of plans do NOT cover something, a patient cannot "pay" out of pocket to have it done!!! NOW HOW STUPID IS THAT???? What difference does it make, if the insurance won't pay, then they patient should be allowed to pay for it!!!! Things are going to get much worse before they get better. I fear I maybe facing either hip surgery(ies) or finding out I have compressed discs in my back from the osteoporosis or something is going on. My pain levels have just shot up immensely, and it seems we cannot get it back under control for some reason. Something is causing my problems, and I am sure it means X-Rays and CT Scans to try and see if something is going on... I cannot have an MRI at all, so that makes it a bit harder. Anyway, he always keeps up with what is going on especially with Medicare, the Advantage Plans and the government..... many doctors don't really keep up so they have no clue what goes on with patients and trying to get things covered!!!

I am totally fed up with it all. It seems every day I battle with these ridiculous headaches. There for a good while, I went for months and months and the only "headache" I would have is a Lupus Migraine, as I called it. I could go in and see my PCP (and in fact I see him tomorrow) have an injection of a corticosteroid and within about 24 to 36 hours the headache would be gone. I've had almost a none stop headache now for at least 3 weeks. As long as I don't move around a great deal, and are not up doing things, it settles down. Yet, as soon as I am up and moving around, or even setting here trying to type my head is just pounding. I've yet to understand why the very sudden change in the headaches honestly. I've tried to research it out, and of course since I've had migraines off and on all my life, there maybe times I go through this process of having them and the they go away for awhile. 

Wednesday, February 25, 2015

New News on the "News" Page of My Blog!

I added something kind of cool to my "News" page. You can go to the URL listed there and see how the weather maybe effecting your Arthritis and Joints, Pain!

Tuesday, February 24, 2015

Life In A "Goldie Locks" Kind of Cinderella Fashion - Then realizing what was back then was a "view" from a childs eyes...

I've done quite a bit of posting, writing, blogging, and more posting today. More than I've done in quite a while for a change. It just seemed like since the weather is making its turn here in my neck of the woods for what sounds like worse for wear, the dreary, rainy, cloudy, soon to be falling sleet and freezing rain shall cometh as the day gets into the late afternoon and evening.

I've put some things up here, on my blog, along with some posts on Facebook, several "Tweets", and some Pinterest postings along with the entire thing also have kind of brightened up my pages on those places that were beginning to feel more staggered, than normal. Of course I go through sometimes even a week or possible almost two weeks, that living daily life, tends to be erratic, errand filled, running hereth, thereth, and yonder... and feeling too worn for wear, when it comes to being online, or even on the computer to write in my book. It comes with the territory of having some of the chronic illnesses I live with. They at times seems to inhabit more of my body, mind and spirit, than just "my own self".

That may sound a bit crazy, and with the amount of issues lately with brain fog, pain, forgetfulness, and sometimes feeling just beyond the point of lazy thus I see at a breaths space, that without my watchful eye, Lupus, RA, Sjogren's, Raynaud's and the rest can slip up behind you when you least expect it and take over your body, heart, and mind much like some alien force that presented itself from a foreign planet.

As I was taking a shower earlier this afternoon, and thinking about my life, it dawned on me how things are so very different now. When I say that I mean more of my own perspective about my life in a very personal sense. When I was growing up in the 60's and 70's... little did I know how much influence my younger years would have on me, when I was 50 and over.

Back then I never gave thought to "money". Of course I knew my family were not "rich" or even very affluent. I always lived on the "other side of town". The North part of my hometown is where the larger homes were built, mostly brick, and were a great deal much more expensive than the small little 2 bedroom, 1 bath room wooden home I lived in. In fact, I was born, raised there, and my Mom after all these years still resides in that exact house. So, it is truly "home" for me.

Mom was about 25 years old when I was born. I get the impression she never really "dated" all that much before her and Dad met. He happened to be almost 13 years OLDER than her. I guess back then, age like that was not all that huge of a factor. Most women in the 50's and 60's were home makers. They took care of the kids, house, cleaning, cooking and so forth. The Dads, Husbands were the "bread winners". They went out into the world and make a living for the family. We always had two vehicles. We usually had a "good" used car for Mom to drive me to school, to the market and errands. Or if we went on vacation we usually went in the car. Dad just about always had a truck. He began with a Chevrolet and the last one Mom traded in after he passed away was also a Chevrolet. Dad bought a brand new pickup about every 5 to 7 years. Mom had worked until I started school. When I began 1st grade she stayed home and Dad as I said was the provider. Dad and Mom were both born and somewhat remember the very "harsh" times of the Depression. Dad of course, much more than Mom. He was born in 1923. He remembered outhouses, no indoor plumbing, wells, hoeing cotton, having a farm, garden, chickens, cows you milked, flour in huge cotton sacks (Mom remembers that also. Her Mom made them underwear out of the flour sack material)!

As the years went by, of course my entire "adult" life was somewhat different than my parents. I worked almost the entire time, from the day I graduated early from High School, until the day I resigned my last job in Seattle due to health issues, I always worked. If I had relied on money coming in from either of my first two husbands, I would have never financially survived. So, things that my Mom never taught me much of, working outside the home, clothes, makeup, and all of the "girlie-girl" things... having your nails done, having your hair cut differently, even having a bit larger home, a new car, 2 kids, rather than like myself an only child, and then allowing my kids to kind of "learn their own way" around the world. I taught them how to take care of themselves. I wanted my daughter to be able to be "her own woman". Never did I want her to have to rely on some guy to take care of her. I never wanted to feel she had to "stay" in an abusive relationship, or put up with someone not treating her like a woman should be treated, due to thinking she "had to" stay. Of course I wanted both of my kids to learn how to stand up on their own two feet. But, all the time I worked and was out of the house, I also needed them to be responsible enough to come home after school (when they were old enough), do their homework and chores, and be there when I came home from work, college or both.

My Dad never wanted me to "play in the band", or try out for any type of extra things in school. He was so strict, he never allowed me to go to football games like the other kids did on Friday night. And by the time he finally DID allow me to do a few things, he would either have to drive me there, pick me up, and was just so very overprotective of me. How I ever learned anything as far as taking care of myself... was either through an innate nature I was born with, or because I had the dearest next door neighbor who took me under her wing, and taught me so much, from crocheting to being a candy striper at the hospital...  all of the things I learned were from her, or from my own trial and error.

I guess I thought life was kind of the way Mom and Dad lived it. He came home from work for dinner (he worked nights for the most part when I was a teenager), and unless he "okayed" me going to my cousins house for the weekend, or her coming over, I was alone with no siblings anywhere near close to my age. I have a half-brother who is 18 years or more older than me. My Dad was 37 when I was born, and my Mom 25 years old. So, I guess they decided that after Mom had a couple of miscarriages after me, that having one child was in their cards.

As I had said in the beginning of this, being "affluent" or having money was something as children we don't think much about. Or back then all of that type of thing was not talked about around me. I raised my kids so much differently. They knew the "value of a dollar" at an early age. I wanted them to be ready when the time came to face the world head on. Not like myself, who was hit right in the face by the time I was 19, had my son, and was paying all the bills myself.

I don't resent that my parents did or did not do things a bit differently. But, I do often wish, they would have given me "eyes" and a "mind" earlier in life to accept so many of the things that life hands us, and if we don't have the understanding, we are not able to deal with it so well.

Dad hated doctors, and hated medications. He just refused with the exception of when he was extremely ill, to see his doctors, and just would not take the medications they gave him. He thought it was all a bunch of bull, and any medication you got on was almost like a sign of weakness. So, when I began to have severe migraines at 17, little did I know just how horrid the next 15 to 20 years of my life would be. From doctor to doctor, from time lost from work, medications that did not work, and Dad never really suffered a "headache" of any kind. So, he could not "get" what a "migraine" was, and why I needed medications for them. He would get almost mad if he knew I was on medication. His Mom back when he was very young, had been ill probably with cancer back then. The only thing they could do in those years was keep someone comfortable, and that usually meant morphine. I those times no one knew that "morphine" was habit forming etc. They knew it helped with pain relief for bad pain, and the doctors gave it out to those that were in bad pain such as cancer. Well, I guess probably my Dad watched his Mom go downhill, and then between the medication and the cancer she was not "lucid" at times. So, he thought that "any" medication could cause you to "lose your mind"... and he definitely did not believe in taking any type of pain medication. So, there were times I just could not even tell him about me being home sick with a severe headache, or the many times I was in the ER with one so bad they had to give me IV medications just to get rid of it.

Even back then, as young as I was, I had joint issues. It began with an accident playing baseball with some of my cousins, and I got used for "2nd base"... and the torn meniscus had to be repaired in that knee. I spent 7 days in the hospital in traction after that surgery at 15. By the time I was 21, I had a 2nd surgery on that knee, and even then I was showing signs of arthritis. Yet, the doctors just didn't put two and two together... to see there was probably much more going on that just a knee injury. After that I began to have various joint problems. Pain, stiffness, severe pain, freezing up, until I had a shoulder, an elbow operated on, and after that, I underwent several more scopes on both shoulders, knees, and then of course replacements of my knees and my right shoulder.

Life for me as a child was days of playing alone outside in the good months, with my dolls, my table and chairs, and as I said, not knowing what really was going on through those years. Even in my teens, I just knew I had an overly strict Dad, that never allowed me to "spread my wings"... he didn't even "encourage" me to go to college... yet I did go and finally got my Associates Degree after years of going at night after work, to get my degree. I am told I am an incredible oil painter, and loved taking those lessons. I took piano for years, and loved that. Even the vacations that my parents took me on, they were nice, and I am glad they took me, but after I was grown I got to go snow skiing, go to Vegas, went to concerts, to Hot Springs, and did many things that my parents never would have tried or done.

We always want to love and "shelter" our kids from the harms of this world. But, if we "shelter them" too much, then they are not prepared for what the world holds later... and all of us know now it just gets worse with each passing year.

My Dad never understood cable TV or Dish, he never understood a cordless phone, or a CD player or DVD player. He certainly did not get a cell phone, computer, or much of anything that was "electronic" in nature at the time all of the digital, cell, and those types of things came out.

I will end this for now, on a note, that I am not upset, nor do I blame my Dad or Mom for where I feel I may have not gotten as far in life as I wanted, when it comes to things I wanted to do, places I wanted to go... and thank goodness I didn't raise my two like that. They "get" the world... but I just hope that people give their kids what they need, that will help them grow into caring, loving, and knowledgeable adults, that can "conquer" anything, and not be scared to do things in life. I felt kind of "shut off" from the real world back then...


Reminders of How you, A loved One, Or Someone Else you Know maybe able to get assistance with medications & other needs for Arthritis

The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.

These are but a few of the pages from their site that can help in so many ways. Be sure to check out all of the different pages, information, how you can help yourself, a caretaker, family, friends, ... from medications, to healthy eating, exercising, doctors, tests, and more... this site really has a huge amount of great information for everyone. 

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/drug-specific-patient-assistance-programs.php

Drug Specific Medical Care above - like help from Pharmaceutical companies.

Above can be actually getting the medications needed from the Pharmaceutical companies, or help with a high co-pay and so forth.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-your-medications.php

Above is another list of places that you may find financial aid for medications, or possibly to see doctors, and other types of assistance.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-medicare-and-prescriptions.php

Above you will find some state agencies and/or local & even possibly Federal assistance for paying for your Medicare Part B and/or a reduction in the cost you pay for co-pays on prescriptions.


http://www.arthritistoday.org/arthritis-treatment/medications/drug-guide/

Above you can go to this URL and find the names and information on the medications themselves for arthritis and arthritis related illnesses.

http://www.arthritistoday.org/tools-and-resources/tools/lab-test-guide.php

Above is where you can find out about lab work you may have done, and what some of those tests are for, and what some of them might be in order to understand more about what the physicians are looking for when they do lab work.


http://www.arthritistoday.org/about-arthritis/arthritis-and-your-health/

Above this link takes you to where you can find out more on arthritis, symptoms, how it effects your other body parts, other illnesses that can often be related to arthritis, and how you can help to keep your own body more healthy. Lots of tips on the site for everything, from eating well, to the proper types of exercise, and how to do what you can to help yourself maintain a "quality of life".




http://www.arthritis.org/




Sunday, February 22, 2015

Medicare Reform - NOT for Just the "Elderly"!

I join in this for several reasons. One of which is that even though many of us at the time when we are much younger in life, never think about needing your Medicare and Social Security benefits. You are working, raising a family, and everyone seems "healthy"... so needing something such as Medicare does not even probably come up unless you are talking with your parents, the elderly people, on TV or in the news. BUT, I can also attest, you NEVER KNOW WHEN YOU will be the one that needs Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift??? Life can turn on a dime, and all of a sudden you are saddled with a chronic illness that no longer allows you to work. So, where do you go? Eventually you may lose out on your insurance as far as health wise, and possibly not be able to even make a living, much less pay for high medications, doctors, tests, hospital stays... and you are in a place of living hell!!! It can happen and IT DOES HAPPEN!! I am walking (sometimes crawling, Living PROOF) that life is not always what it "should be".. or what you thought it would be... withing a breath's space, things can change... and when you are needing Medicare the very MOST in order to just have the vital doctors and medications to sustain you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or more medications some of which are 300.00 or more a MONTH!!! There is NO WAY most anyone can afford to pay out of pocket... so we need change.... change for the ones growing up and working now... in order that when they retire, Medicare and Social Security is still there for them. OR in a month, or year, or a few years down the road when all hell breaks loose, and you find yourself too ill to work, too broke to afford health insurance, and you need "those Medicare benefits"... that is when it will dawn on you... Gosh I wished I would have stood up for CHANGE!!!!!

These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!

WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!