Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....

FDA APPROVES 1ST "Biosimilar"! Great News!

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm436648.htm

This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.

Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.

This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.

So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....


http://www.biosimsafety.org/pbsamembers/

YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation

Okay Guys and Gals!!! I am asking for YOUR Participation in this EXTREMELY IMPORTANT situation. As most of you probably know I have made "Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am headed for Washington D.C. March 22, through March 24-25th... for the Annual "Summit on the Hill" by the AF. We will be going personally to Capitol Hill to both the Senate and House of Representatives, to meet with as many of them as we can. If we don't get to meet personally with them, we still usually meet with their "health legislative" assistants, and other staff that can help to deliver our information and message. It is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and truly KNOW YOUR VOICE COUNTS!!! I know many of us have become disenchanted with "Congress" - our Senators and Representatives for many reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES MATTER!!! I have seen the results of what letters, phone calls, messages, and meetings can do for all of us in the matter of Arthritis, whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our other "Autoimmune" and other health issues. BUT, WE need YOU to also raise your voice and be heard. We will be DELIVERING YOUR LETTERS PERSONALLY to the Senators and Representatives that you can follow from instructions below, and fill in your personal parts, tell your story also, or however you want to personalize it. The Arthritis Foundation NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to DC, still please use this letter to be given to your Senators, and Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and continue to truly believe we do matter. BUT, if you DON'T contact them, then they do not know your situation and how YOU feel. So, I am posting here, on my blog, on my Pinterest, on my Instagram, on Twitter, everywhere I can about how to be a part of this critical movement! This is for ALL of us, with these horrible illnesses, that need help with getting good physicians, the MEDICATIONS WE NEED and making them AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed Forces Come home with arthritis problems or develop them..... and many of our youngest of this nation are also patients, with Juvenile Arthritis. I want to urge each of you to take a bit of time and send your letters. I am including all of the instructions in an attachment and at the URL that is provided. If you have questions feel free to ask me, either through Facebook, or through message or email me. If you would like me to help or if you have a message you want me to take your letters with me, and I will make sure they get delivered. 

Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health. 

http://www.arthritis.org/ad…/sign-up-to-be-an-e-advocate.php

Then this is how you can "attend" the Annual Summit on the Hill as a member of the "Virtual Summit"... this link provides you with a sample letter that you can also personalize, add your picture, and tell your story about your health issues when it comes to arthritis, whether a patient, caretaker, family member, or just want to be a "voice" to help others.

 http://www.arthritis.org/.../virtual-summit/letters.php

 

You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.

 ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.

 

Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...

  http://connectivity.cqrollcall.com/just-a-handful-of.../  

 

Advocacy Summit: Virtual Summit | Arthritis Foundation

Advocacy Summit: Virtual Summit | Arthritis Foundation

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. 

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!