Showing posts with label Arthritis.org. 2014 National Summit of the Arthritis Foundation. Show all posts
Showing posts with label Arthritis.org. 2014 National Summit of the Arthritis Foundation. Show all posts

Tuesday, October 14, 2014

Sharing the Excitement of the Coming Months! (Trying to Ignore the PAIN of these Illnesses - RA, Lupus, Sjogren's, MS, Myasthenia Gravis, Perniscious Anemia and the list grows)

I have been trying my best to "brave" the chill in the air, knowing that means several things. Shorter days, cooler weather, Fall colors and Autumn leaves coming down. Holidays here before we know it, cooking, baking, and the smell of Thanksgiving, pumpkin pies, rolls, wonderful home made quick breads, and spices like cinnamon, cloves, nutmeg, and those "pungent" aromatic hints that Winter is here, Christmas, and before we know it,  2014 will be a memory, and 2015 shall be in full swing.

My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.

I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.

Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.

It is also getting close to that time we make our "New Years Resolutions"  or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...

At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)

So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.

Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.

Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.

I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.

From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived.  I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.

So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.

I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days  the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.

Cherish those moments.... never let anyone or anything keep you from "your own dance".....

:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...

                                                                                                                                                                                                                                     










Sunday, September 28, 2014

Two Days of Insanity....

As just about anyone knows who follows my Facebook and blog site, you know about the accident that happened on March 26th 2014, to my husband Jim. Most of you knew I was in Washington D.C. at the time with the Arthritic Foundation, for the Annual Summit on Capitol Hill. It was my very first time to be in DC, as well as my first time to get the opportunity to voice my own personal struggles, along with all of our struggles, involving autoimmune illness, medications, lack of doctors, especially Pediatric Rheumatologists, and so forth. There has not been nearly enough done about these illnesses, ranging from not enough doctors, not enough research, not enough knowledge to those who have the illnesses or know someone that does, whether family, caretaker, friend and so on.

I felt my voice there and since then has been integral in helping to move forward and fight against illnesses such as RA, Lupus, Sjogren's, MS, FM, CFS, and the gamut of Autoimmune illnesses that we do not even realize exist. A new factor for me this year had been that I have "pernicious anemia", which is an autoimmune illness. Rather than being "anemic" my body does not absorb enough out of my food, and keep it going in my body as it should, thus I take B-12 supplements, which by the way, it is the B-12 it effects as far as the autoimmune part of this. Of course I am on a HUGE daily dose of Folic Acid" which is B-6, due to one of the medications I take. It depletes the body's Folic Acid, so I must supplement it daily with about 400 Times the amount a normal person would need. I found out that much of my horrible sores, thrush, and mouth ulcers were caused from a lack of Folic Acid. Once I began using it daily, at a high dose (it is water soluble so you can't get "too much") my mouth is not nearly as bad about having all types of sores, ulcers, sore throats, thrush and so on as I had before.

I had not given much thought that due to the "nature" of what all has transpired that I would not be able to "voice" the everyday thoughts I feel surrounding what all happened, has happened, and what may or may not happen over the next year. In a way, that makes me very sad. The very one outlet I have to things in life, from illness, to children, to Mom, marriage, and my own frustrations with illness, I always knew I could come here and "talk" about what was happening and not at the time had to "censor" what I spoke about when it came to life. Yet, now I feel this heavy burden, although never was my fault, and I never gave any idea to it, I am may not speak about all of what is happening as the time over the next few months go by, So, if I avoid that subject it is certainly not because it is forgotten, or it is not still a huge everyday part of my life, but because life is as it is, I have to "alter" my own voice, as far as my posts, and not speak, unless it is in a very general sense of what happened. Most everyone that comes to my blog, for the most part are people that are close to me, enough that they already know the ongoing saga from March 26th, 2014. So, there is really not a "need" for me to tell others, but more of a need for me to be able to "release" my ongoing revelations about that being what it seems life as it is right now evolves around. You tend to get up when the "rooster" crows with the thoughts of it spewing out of your brain, and then all day long it seems every thing, every where, all that you do is a reminder of the nightmare of having something so horrible happen in your life. Each time I close my eyes, that is a last thought, and each morning I awake with it as a first thought, and all through the days you tend to live out in thought of it. Then while you sleep the PTSD hits, and it can also happen during waking hours. All of you who have Post Traumatic Stress Disorder know exactly what I mean... you spend your days trying to knock it off your shoulders and in the night, you try to take it out of your dreams, so you can at least have some peace during your sleep. Good Luck. Many people and I have even had the thoughts that "things" would be better as time goes by. Memories fade, time helps to heal the damage physically, mentally and emotionally. I can tell you that this... time has NOT erased, nor has it made it any better. If anything, each passing day the building up of being totally in damnation by all that is occurring around you, only grows larger, nothing fades. From the very 1st phone call, till the last piece of daily mail, to the questions, and I mean just daily questions, how are you, how are you getting by, how are things??? Questions, that sometimes I wished I could just say things SUCK! Things are worse, no better... life has lost its luster filled wonder, my dismay of voice, of writing, of being so caught up in something that I did NOT even have anything to do with, is running rampantly through my life and through my very veins, like the blood my heart pumps with every beat. You DON'T heal, not that quickly... you DON'T stop feeling guilty over something YOU DID NOT DO! You don't find a quick fix... there is none... so I plunge myself into trying to write, I plunge myself when I feel like it, trying to throw out all of the stuff in this house that are reminders of what life used to be like. I DON'T want to even remember a "good" or bad moment... I don't want to have to fear the past, present, or the future. I am sick and tired, of hearing, feeling, and being sick and tired. I am sick of bitching, griping, moaning, groaning and crying. I am sick of listening to others try to tell me it will work out, it will get better, because right now nothing seems better, everything seems out of sorts, out of whack, and I have lost all patience with those who think they can "fix" it for me. There is NO FIXING what is permanently broken.
My mouth and teeth for example. Let's get on that band wagon and have a talk about those. Of course not one dentist could fully assure me that my mouth would be better when all of my teeth that Sjögren's destroyed, when pulled out and dentures put in would be 100% better. I knew that. I am far from a moron, or from a dreamer. My "dreamer" stage left me a long time ago, after my job, and my life almost fell apart in Seattle. He threw enough sand in my eyes, and did enough damage to my heart, that I no longer am the "dreamer" I had been. I truly feel that is why the poetry I used to be able to write, sometimes 7 or 8 daily, don't come anymore. When Steve, did what he did, after bringing me over 3,000 miles away from my "home" and family, with promises that I would have a wonderful life in Seattle, to only shoot all of those good feelings down within a year or a little over after me getting settled in, with his cheating, lying deceitfulness... dreaming ... as far as being a dreamer, left. That is when a "new voice" emerged and my writing became totally different. It will never be as it was when I was that creature of wonderment, of discovery, of believing people truly cared.... he literally took his hand, reached in and pulled all of that from my heart, and threw it into the Sound at Seattle... for there is where all of those wonderment of feeling lie... in the Sound of Seattle... I can still at times feel the winds blowing across as I looked at the beautiful city, when I walked daily on Alki, loving each day there, and breathing new life, wanting and knowing a new glory would emerge.


I don't want to sound like I am that unhappy being here around my Mom, kids, and Grand Kids... and I am not putting down our lives, or feel "cheated" in some way as far as why we are here, and why we will probably continue to be right here, probably in the same house till Gabriel's horns blow. Yet, "cheated" from living life as I felt we would I can say is a terrible disappointment. Kind of like FINALLY after years and years... of not being able to say I was a "published author".... I got that opportunity... not only once but TWICE I can say I have two published books, and even have a "check" from the seller for two of them that actually sold! I am so tickled about it, I am not going to "cash" it, but frame it and put it on my wall by my computer and desk. Even though it is a mere little over 6.00, it still means that it is priceless to me. It gave me a tiny glimmer of "normal" and that a minute bit of my "hope" and Faith could actually coming back to me. Which is far from where I've been in the past 8 months or so. I had given up on normal forever, and as far as the glimmer of hope and faith; believe me it has been fading fast in the background of all that has taken place since 2005 and actually a bit before then.

As I had titled this post "Two Days of Insanity"... there were reasons for the title. I thought about "re-titling" the post, but whatever it is "called" will not change the meaning of the post in itself. I have been trying to squeeze in lots of my own personal advocacy and activist work, over the months, but between being gone to so many different appointments, taking care of all that needs to be done here at home daily. from taking out the trash to running to the market, it seems my time either is gone, or the energy that I did have in my "spoons" for the day are used up.

That should "stick" with me more than it does. When others ask me how I am doing, feeling, whether they mean illness wise, emotional wise, from autoimmune illnesses, to his issues with spinal cord injury, I really should say well I began this day with 8 spoons, getting showered and dressed took at least 2, maybe 3. By the time I had coupons ready, a list done, and ads matched up there flew out at least one at the very, very least. THEN I am looking at having at the most 5 spoons left. Well, by the time I run errands, get through the market, which here seems to be a nightmare any day of the week, or have to go and do something at Mom's,or it is laundry day, or I have to find and fix something for dinner, if I had already used up the left overs.... so I can contest, by then there are OVER 5 spoons used up, and my day is not over yet. 

I still have dishes to do, right now we are fighting "sugar ants", which I was raised here in TX, so here we called them "piss ants". Don't ask me why, but I always gathered it was because they were so extremely tiny... they will sniff out one crumb, and within an hour invade an entire bowl of dog food, if you are not watching. I decided to try something "harmless" to the dogs... so I read putting back soda around their bowls would stop the ants. They won't go into the baking soda. So, guess what? Both dog food bowls have baking soda surrounding them. Knowing my "Chi_Weenie".

Then I also read ants hate tea bags, like after you brew your tea, let the bag air dry and put it in the corner of a shelf where you have stuff it won't hurt and where you have seen ants. Hell I even bought the "good" any bait traps, and I am still finding ants in stupid places. I guess they are either hungry or thirsty. But, dammit I am sick of trying to keep from spraying Raid and getting the heck rid of them. Even though about a week ago, I bought "Raid" for ants mainly with a get this "Lemon scent". I hope the hell someone does not think it is furniture polish!!! And I sprayed it on a rag, and wiped down the splash boards window sills, everywhere and everything I could without getting it around food or anything else. And even after doing that, wiping, vacuuming, and spraying where I could. Plus I leave nothing "open". Anything from chips to bread, goes in the fridge. If it is something that possibly will attract an ant it goes in plastic or glass containers with lids on them. So, that the hellish little devils you would think would move on. I am NOT a fan of any kind of "bug".... from a spider, mosquito, I don't care what it is, if it is "creature" of any kind, it does NOT belong in my house. So, I am a real stickler for spraying the yard, all around the outside perimeter of the house, and then I keep the roach baits and ant baits out and update those about every 6 months. The ONE thing I cannot get rid of and that I despise so badly is those little freaky looking "newt" lizard looking things. They just make my skin crawl. Oddly enough all my life here in TX, before I went to Seattle in October of 2001, I had NEVER seen a "newt" or whatever at any of my homes... never... no kind of lizard thing. I had a mouse once, and actually had a possum climb up our pipe that came into the house to the water heater... and she actually took her scared butt down, got by the steps of our front porch and stayed there for weeks with babies clinging to her. It was weird. But no damned things like that. So, the first time I saw one in our home we live in now, I had no clue what the heck it was. Weird almost a pink iridecent looking thing that ran fast, looked like some kind of strange lizard, and I was hell bent to rid my house of those little bastards (excuse my French)... so here I go online to find out what to do to get rid of the damned things. We had gotten just about rid of the few mice in the attic, at the time they put that insulation down that is kind of like shredded looking newspaper. Other than that an occasional water bug, which won't last long here. or a spider that I also despise, thus I just knew I would find something to rid my house of those things. They certainly were not the cute little "GEIGO" Gecko... and even if they were I don't want them in my house....

Well, guess what ladies and gents! It is almost impossible to get rid of them. Undoubtably they are not effected by bug sprays, roach baits, spraying the outside all the way around the house, including the porches, and those damned things are just not subject to any of the poisons or baits. Well, I figured out they "hide" in the grooves of the siding and the frames of the windows and doors. They also hide behind out two front porch lights. Plus I would bet they are in the insulation of our walls. So, everything I read said leave them alone, they eat bugs and are harmless. They maybe harmless but they sure as hell don't look or move as if they harmless. They creep me out just about more than anything other than a snake.

Anyway, how I ever got off on that tangent I am not sure other than the one thing that came to mind, is one of our "storm windows" on the  kitchen window has just "popped loose" and was hanging there by a couple of screws. I almost fainted! If that sucker falls out and breaks we are in deep crap. They are not cheap, and we still need to buy all the ones that go over the windows in our music room. There are I believe there are 5 of those at about $80.00 plus a piece, because they are made to specifically fit the windows. We were going to get the man who put up all of the rest of them to get us those for a bit cheaper rate, and then he would put them up  ... of course something else always comes up thus we did not have the money or time now and again to finish them.. and they need to be done... those old windows back there do not even have any of the push pins and the stuff you put around the windows to seal the glass in.... the glaze is just about out of all of them, then we had hail knock a hole in one while Jim was in the hospital, so I have it all put together with cardboard and lots of duct tape... 9,999 uses for duct tape, a wire coat hanger, and WD-40!  

More later.... got to get dressed to take my Mom to shop...

Tuesday, September 9, 2014

Arthritis Foundatiion Jingle Bell Run in TX and Many Surrounding Communities In December!!!

The one closest to me is in Ft. Worth! I would love to see one of the girls I made friends with in DC while I was there in March!!!! Here is the URL and all of the information.... Please come and join or give your donations....:)

Ft. Worth's appears to be on December 6th


http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128







 

http://www.arthritis.org/programs-events/jingle-bell-run/




Friday, July 25, 2014

Friday, June 20, 2014

JRA (Juvenile Rheumatoid Arthritis) Yes Children Can Suffer from this Affliction also...

JRA (Juvenile Rheumatoid Arthritis) and/or Still's Disease as a chronic autoimmune arthritic illness that effects children. I realize many of us have to wonder "how" and "why" a small child could have this and if they do, how do they discover it, how to the children deal with it, do they give them medications like they do adults, and probably if you truly sat to think and talk about it, you would find all kinds of questions floating around in your mind.

I had heard of JRA for years. I also knew it was certainly an autoimmune arthritic disease, that struck hundred of thousands of kids annually all over the world. Yet,it never occurred to me that they may possibly need a "different" type of highly specialized Rheumatologist (Pediactric Rheumatologist) who had more schooling and expertise in dealing with the children's type of illness. Often these children are "born" with it. From day one, even though the symptoms and signs may not manifest themselves for a awhile, or even if they do have symptoms many family care doctors, and pediactric doctors may not think about a child coming in with a myriad of "symptoms" over the course of several years, until one day a blood test, or something that the physician witnesses does the 2 plus 2 finally equal 4!
I had the fortunate experience of being in a group at the Arthritis Summit in DC this past March, with a gentleman, whose daughter was diagnosed with JRA when she was 9 months old! She celebrated 10 years of JRA this past month or so. Between all of the information he could tell us, his own experiences, his daughter's, and all that he has himself learned in order to help his own daughter along with the thousands of other kids, there was just so much he told me that I even with my research didn't know.
For one, we have "VERY FEW" Pediatric Rheumatoid Arthritis Specialists in the entire Nation! just in Texas alone, we have about 3 to handle ALL of these children's illnesses. Parents drive hundreds of miles, or even have to cross over go to a "pediatric Rheumatologist" for their child to get proper care. As huge as the state of TX is, there is only about 30 or less of these specialists. They are mainly around the Houston, Austin, San Antonio areas, the larger cities. So, kids that are off in West TX, or deep South TX, or in East TX, are the ones that parents must spend sometimes a few days getting them to their doctors for medications, blood work, testing and so forth. It is insanity.

Here is an event, from the Arthritis Foundation, especially for these kids. They have a camp they go to annually, that gives them a chance to "feel like normal" kids, and they can even bring "siblings" that can feel like they are a part of the process rather than feel like they are almost "left out" because a sibling seems to get more attention due to the JRA. It gives siblings a chance to "bond" and all feel equal and helpful. These are just incredibly amazing kids and I look forward to getting to know them better, and get a deeper understanding about their illness. Here is the URL about the upcoming JRA Camp.... take a moment if you will to read about this and how incredible these kids are.... to go through what they do... and still have such a positive and lively attitude... never feeling "sorry" for themselves, but having an understanding of how their lives will just be as they are because they have been this way since they were very little for some of them... they know not "normal" like us adults that sometimes don't get RA diagnosed until our 40's or older... if they have JRA from the time they are 9 months old... then that is "normal" for them....





http://endarthritis.org/

Sunday, June 8, 2014

Help Out... Become An E-Advocate for the Arthritis Foundation and have YOUR VOICES HEARD on Capitol Hill!

 I wanted to share something with all of you about the Arthritis Foundation. Of course they have several ways you can "help" the cause. One of those is to become an "E-Advocate". Which they send you an "updated" newsletter about 3 to 4 times a YEAR, and they do NOT give out your information, plus they may send you an occasional email about say "RA, osteoarthritis, etc" that is something they are "working" on to get the Congress people to be educated, and give them a guide on how the "people" feel about it. You never HAVE to do anything. But, if they send something you are passionate about, say a change in how Medications "tiers" are now, which is a huge one for all of us, you can have an email sent to your own House of Representative and/or Senators... it is already made out for you... you just pull the ones from your own location through a zip code, and hit send, OR if you like you can certainly add or change what you want to say. As I said, you do not get any daily junk mail, adds, or anything of that sort. In fact I am attaching the URL explaining what an "E-Advocate" does. If you would like to be one, please email me, send me a message or post. It is a part of something I am working on to become an Ambassador for them, so again I can take OUR voices to Congress and Capitol Hill and represent ALL of us... and I did! And I did see the great results, even in my own Congressman honestly, so I know this works. Here is the URL... if you do decide to become one, all I need is an email address, your zip code, & a first and last name. I have to turn that in so they know I completed that 'assignment". I ask of you to do this, because that gives me a chance to take YOUR worries, cares, concerns, and what you want to see changed in the health field for you, our nation, and tell our own government how we feel.




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