Autoimmune Illnesses - Does Illness, Doctors, Tests, Treatments and Medications EVER END???!!! I am just totally wiped out.... A Week from Hades for sure!

Does it ever end? I DID get a new rug cleaner, and even got an extra $10 coupon off of it, so I have it at home, out of the box, and trying to get the "opt" piece to line up and then there are 2 screws to put in once it is all lined up. I was just too tired, too aggravated, feeling just sick, after an all day of running again yesterday. So, I DID GO TO THE DOCTOR yesterday!!!!!! I called and they told my doctor what was going on and he wanted to see me at 11:30 yesterday morning. I had already felt like something was not right about this growing "lump" on the top of my left thigh. It began getting larger almost each day. And it is about the size of a silver dollar or maybe larger. Sure enough, I have cellulitis. NOT GOOD! If I had not went in when I did, I may have found myself as an inpatient on IV antibiotics over the weekend. He said that he was giving me two different antibiotics, both very strong and in fact one of them they actually use for certain types of Tuberculosis. (interesting since I still need to get that Chest X-ray) and have NOT found time to get it yet! So, after I saw him, I had already been to Wally World and got the rug cleaner, and then I went by Mom's. Well, of course she had not picked up her meds yet, so I had to go get mine, one of them my pharmacy did not have and was not going to have it until Monday.... and it was one of the antibiotics, so I did not want to go without it if possible. So, I went across the street to pick up Mom's scripts, and I happen to have a copy of the prescriptions. They did have enough of the other antibiotic, so I asked them to fill it and I would pick it up in an hour or so... so I visited with Mom, explained her meds, and left to go pick up mine. Then I came home and was just exhausted. It was already something like 4:00 PM and again I had been "running" since about 6 that morning. So, I changed clothes took the medication and got on the sofa with the pups. But, I was just restless and honestly really concerned about this cellulitis mess. That lump has already been there about 4 weeks, maybe longer. So, it really worries me since it can turn bad very quickly, especially when we are immune compromised. I want to use my new carpet cleaner, but my stomach is just YUCK! I think it is the antibiotics. I have a billion things to catch up on.... here at home, online, and then I have 3 days of PT for Mom next week, plus I need to schedule the MRI for her, and then they called about the ESI (Epidural Steroid Injections) already and want me to call them back Monday to schedule those. So, I am not sure if the doctor wants the MRI first, or if he wants to go ahead with the injections.... but that means a possibility of either having a test or going to a medical "something" everyday next week! Plus I have not even had the time, nor the energy to go and have that damned chest X=ray yet. So, I am exhausted to the bone today, and feel like hell. Keep Mom in your thoughts and prayers... she seemed to be better yesterday, but we all know with especially "back pain" one moment you can be fine, and the next in almost unbeatable pain... so one day of feeling good certainly does not constitute it is over yet. I am going to try and stay online this morning and catch up on a few things. But, I will see how I feel. Right now I hurt all over and as I said, I have to take those antibiotics on an "empty" stomach of all things.... as if they are not bad enough to take with food.... I wish everyone a good weekend.... and I will be "around" off and on, just depending on how I feel. and by the way, THE MAYOR SIGNED THE SEPTEMBER 2015 PAIN AWARENESS PROCLAMATION!! I GOT IT in the mail yesterday... BUT they must have not let the ink dry enough before sticking it in the envelope, and a couple of the letters on a couple of words have been pulled away.... so. I am not sure even trying to "go over" those can fix it... I may have to have the woman that did it, redo it and send me another one. I hate to but I've tried to kind of go over them and it just looks horrible. I may try to scan it in, match the typeset and "fix" it in Photoshop if I can... I shall see.....

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. 

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!

http://fixmedicarenow.org/patients/

An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more

Great Article about "chronic pain" especially joint pain and the weather. I know for myself, that like yesterday, the very sudden huge drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into one of the worst days of my life with pain. Ironically we were going to my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so badly to tell him that I could sit in the floor and scream, I hurt so badly, but I knew the appointment was not "about me", thus he knew by looking at me I was hurting... anyway, I had a headache that is one of the worst I've ever had even from years back with my migraines, and NOTHING would stop it. Believe me I tried everything I could think of. Then my neck was so stiff I could literally NOT turn my head to see over my shoulders while driving. I had to turn my whole body and use mirror. Then my lower back hurt so much, I honestly thought I had kidney stones. And my legs, ankles, feet, wrists, and my thumbs were so terribly bad, I felt they were stiff, and just was not able to move them without horrid pain. Now, the weather I KNOW "in my bones" (no pun intended) has effected me for years and years. Even when I would have migraines in my 20's and 30's the dramatic weather change could bring them on almost every time. No one quite believed me, and then when I began to see my Orthopedic Surgeon and he did all of the joint replacement and surgeries on me, he totally agreed the weather would absolutely effect pain, especially joint pain. Even the "phantom" knee pain I get with my knees, that seems like I never even had them replaced will come on with a vengeance when we experience storms and so forth. So, let not anyone make you think you are crazy, when your pain is worse in weather fluctuations. I think it is definitely so. Yesterday was living proof for me. But, I am also hurting today, so far not quite as badly as yesterday, but I can tell if i were to get up and really start moving around I would be in a world of hurt... which sucks. Because I have to get out today cold, bitter weather or not, and pick up scripts both of us have had filled. The visit with my pain doctor for Jim went well yesterday. Finally someone that will work with him. But of course this is ALL coming out of our pockets, and everyone knows office visits and medications are NOT cheap. I dread picking his up, and then this is my first time having anything filled since I had the new insurance start on the 1st. So, I hope the hell I don't have major issues with United Health and my MAP... I will be so pissed if I start having hell getting meds etc paid for. That is why I dreaded the change from Humana so much and just put it off the last two years. But, more and more of my physicians were dropping Humana, even my PCP, thus I decided to change over to United Health... is it a "Secure Horizons" AARP endorsed Medicare Advantage Plan. This one hopefully will not be too difficult, because I am already established and have been for years with all of my physicians. So, they assured me since I've been on the meds, and have been seeing these doctors for years things should go fairly smoothly with the transition. I will believe it, when I go today and try to pick up the scripts.....


Talking About "Good RX" card for prescriptions.... 

http://www.goodrx.com/

I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at redstangblonde@yahoo.com or rhia@ravishingrhia.com.... I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!