Paul Gileno speaks out for ALL of us with Disabilities!!!! Now it is OUR Turn to tell Rand Paul how we feel about his comments!

 

 

U.S. Pain Foundation President Speaks Out Against Senator Rand Paul's Disability Comments

 

http://myemail.constantcontact.com/Founder---President-Paul-Gileno-Defends-those-with-Disabilities.html?soid=1103157487426&aid=A6wnyF06XsU

Now it is OUR Turn! Open Your mind and mouth, and/or email hands and type how you feel about these remarks. 



We must stand up not just for ourselves but ALL that suffer disabilities.

#USPain

www.Facebook.com/RandPaul

Invisible Disabilities Week!!!

http://invisibledisabilitiesweek.org/

Just because You CANNOT SEE IT - Does NOT mean that the pain and disabilities are not there!!!

PERSONALLY - World Arthritis Day...

Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.

My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.

The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.

The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily.  They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.

I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain. 

I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!

Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.

It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.

All of these did come out of a "medical dictionary online"---

 Definition of ILLNESS: an unhealthy condition of body or mind : sickness  

 Definition of DISEASE : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors : sickness, illness—called also morbus

 Definition of SICKNESS

1: the condition of being ill : ill health

2: a specific disease 

 Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality 

 Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena

1: an observable fact or event

2:  a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....

I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena,  ...

Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.

Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.

Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.

At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.  

I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...

But, I also needed to kind of update everyone about where things stand for myself ...

My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..

I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems,  had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.

YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...

So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....

Sometimes this world is truly NOT fair....

Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning... 

Keep watching because they will never get rid of me! :)

Rhia 10-12-2014

 

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...

I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjögren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjögren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjögren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??

             

Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Some Updates on the Wreck, Jim's Progress, My own Illness, with the pneumonia, teeth etc. and life

As you can tell, we are still reeling in many ways from everything over the past several months. Jim is home, and he is doing quite well. Honestly, much better than I, Him and I think even his doctors thought he would by now. He still is suffering from some abdominal pain, but more when he eats, and all of that pushes against those ribs. He had about 19 broken, at least on in two places. So, as he drinks water during the day, eats and so on, it seems due to the "lack" of nerve feeling, and then the "SOMEWHAT" odd places he right now has no feeling, the pain is better, but he is still dealing with some, especially when he is very tired, or after outpatient Rehab a couple of times a week.

Anyway, it seems I have been able to kind of "open up" for the first time in a very long time today and "hear" my own "voice" again... as far as my writing goes. Honestly, I truly felt I had lost all of it this time. For many reasons... first of all, my mind was not here, just the shock of the wreck, the plight of my own fall, my teeth, or lack of them, a continuous flare, not knowing where Jim would be, whether he would even walk again was a huge question right after all of the damage, the surgery, and everything there... more spinal cord damage was there, than initially thought... so there were many things holding me back from being able to truly "write" what I was concerned about. I even was ashamed of myself about feeling not up to truly doing my volunteer and advocacy work, which I love. But, I realized that will and is coming back now... it was just everything going on that those things were temporary. I am already putting a foot forward, baby steps, in trying to get myself settled back in my duties of volunteering, advocacy, and ambassador things.

but, since there have been a few more updates over the past week or so, I thought after posting to Facebook, I would also post here... I HAVE t get myself back into my blogging. It is so very important to me... and I feel my blog will continue to be somewhat the same, but I feel I will be adding more things in the realms of spinal cord injuries, rehab, and I will be adding more information about things such as Baclofen, which they use for SCI's and MS also. I have also been dealing with more other realms of medical issues, that also will tie into the autoimmune illnesses too. So, if you see me taking a bit of a different track, know I am "adding in" not taking away at all.

So, I will "paste" a couple of my FB posts below from today. They have updated information that some of you maybe interested in.... much more to come (this has not taken all of my will power yet)... even though it such made a dent in it this time.....


Facebook posts below from today and yesterday.....

Hello all..I've been trying to get here to update everyone on Jim's homecoming and first f/u with his back surgeon, and then my situation. But it seems too much to do, too little time to do it, and feel like hell... all three make for some frustration. The back surgeon was VERY pleased with Jim's recovery process! In fact, I think he was almost overwhelmed at that fact, that since they have NOT gotten Jim's wheelchair out to us yet, that he walked the entire way all day on Thursday with his cane!!!! :):) The wheelchair is actually just for LONGER walks, like through a huge store, or to the doctors where like Baylor it is a nightmare sometimes to walk to where your doctor is, etc. He is going over to Rehab twice weekly in Waxahachie, then doing his other exercises etc, walking here at home. He has now began to have some spasticity issues, which usually show up about 8 to 10 weeks after a spinal cord injury. So, we had asked about Baclofen, and he said absolutely. He thought he might already have been put on it, while in Rehab. But the symptoms of it did not really begin until about a day or so before he was to come home. So, we were not sure at the time if that was what it was or not. But, it is and just like someone with MS... it should help immensely. From there we had to go have my pain pump refilled. Which now they can do in their office, thus not the nightmare of outpatient at the hospital, much quicker and much LESS expensive. My lung X-ray last week on Thursday came back and appears the pneumonia is gone, even though I am still wheezing, and rattling. But. they thought it was more of an asthma development, and put me on another inhaler, and I am already on Singular, plus a huge 60mg dose for 5 days of Prednisone once again. But the next day, of course never happens while you are AT the doctor, I got up to about 4 massive ulcers on the bottom of my mouth and something in my throat that hurts like hell. I have a tooth (more than one) that HAVE to be pulled, but no way he could work in my mouth as it was, thus I am trying to get some of it healed up for Monday, so I can get the ball on the roll. I am thinking having these rotten teeth, what few I have left, could be also causing me to have the other issues, almost like a constant flare. Also, I still have not gotten to have my 2nd round of Rituxan due to the pneumonia, thus one ankle the right one swells up horribly, and the pain is back in my fingers, thumbs, toes, ankles and feet with a vengeance .... but I also run the risk of having further mouth infection, if I am on it, when having 5 teeth at a time pulled, and going through all of that, and trying to not have a flare, BUT moreover NOT getting dry sockets and infections. So, I am in between a rock and a hard place. The pump is filled through September, yet my pain over the past week has been terrible. I think just ALL going on, and as I said I seem to be in a constant flare... anyway, so between the two of us, lots going on. We kind of have to grin about it, because it seems both of us are dealing somewhat with the same issues now when it comes to our physical bodies.... We saw the Xray of the surgery, right after it was done that night. He has a set of 7 fusion bars, so he beats me by 4...LOL! funny but not, talk about looking odd though... I know when I saw mine, it was like WOW, that looks like something I would work on the house with, nuts, bolts, screws and bars. So, for all of you that have been with us through every step of the way, I again and Jim too, appreciates every one of you.... we also both ask for your continued thoughts, well wishes and prayers. We have a long way to go for both of us.... but as I told him yesterday, from what I watched about 6 weeks ago when he was at the hospital, versus what I see now at home.... I now see much of the "normal" parts of Jim more and more each day! :):) He is still in pain, but he is determined to be able to walk without the cane, which may or may not happen. But even if the cane stays, honestly he is a walking miracle. Between the both of us and all we've been through, my pain doctor was almost in tears. He did not know how badly things had been since he was me earlier in the year for my pump refill. And I had forgot to mention I had fallen that same night of Jim's surgery also... We are truly blessed, but I admit these last few weeks, sometimes I have to truly "hunt" for those blessings... the pneumonia and all of my own weakness, pain, my mouth, the ulcers, my throat, a huge swollen ankle.... I have to make myself STOP every once in a while, and truly THINK just what a blessing we do have.


AWESOME NEWS!!! OUR LAWYER FILED SUIT AGAINST THE 18 WHEELER COMPANY THAT RAN OVER JIM. It was official yesterday! And THEY LOCATED THE CAR! We thought it may have already been crushed, BUT the company that bought it from the auction, still HAS IT! So even better! OUR PICS were GREAT BUT NOW they have their own Professional inspector that can see it up close and personal!!!!!! :):) This is truly incredible news....

I so appreciate all of the "Thumbs up" and support.... as things began, you really do not think in the "monetary" terms of something such as this. But, now as we see the bills coming in, we think about having to buy the car, time lost for his work, time and money on Rehab, traveling, doctors, medications, pain and suffering, the issues of me "losing" my care taker in many ways, modifications to the house, you name it... now this part begins to set in.... and even though I am NOT ONE for believing in "suing" as some do... under these circumstances, I truly believe if all is as we have seen and heard, this company should be responsible for ALL of it. They have refused to even speak to our insurance company or our lawyer. Even turned away certified letters, or even allowing the lawyers to speak .... they have told "lies" as far as we know about the happenings of that event... as far as even having the driver of the 18 wheeler say he was NOT in a wreck, and he was not driving that truck that day. It was also picked up and towed away by guess who? Their own company, very quickly, even before the investigation got underway after the accident... thus they are refusing to cooperate in any fashion at all. That tells me... they are hiding something, or they would be out telling the story as "they" saw it.... as far as the two (without a driver's license due to NO INSURANCE anyway) in that Tahoe they are already out of the scene. They also would not cooperate at all, and basically "disappeared" along with the so called "witness" that just happened to walk out on his porch about the time our car went sailing under the Tahoe, (due to the 18 wheeler shoving the car under it)... anyway, that person suddenly disappeared also. My insurance refused to pay them a dime... and closed that part of this weeks ago. So, the portion now is the 18 wheeler tractor trailer business who owns the vehicle... As I said I do NOT believe in suing ... and honestly, probably may honestly think about having a "side suit" in for my own losses due to losing Jim as my caretaker. It has caused my own health, mental and emotional status harm... and our lawyer is the one who even mentioned it. He said that it may take longer to try and get that all in order and settled, but we should think about it due to my own pain and suffering, health issues, and the fact that now we may both be facing totally disability... and "no" outside caretaker. My Mom sure can't... bless her heart, she is doing more than she should right now at home I think because she hates to ask me... yet she should allow me to do some of what she is trying to do before she winds up accidentally hurting herself. Thus, it is up to the both of us, possibly later on some in home health care... and like I told Jim, I don't know where my own health issues may take me... I may face being on a cane, etc... in the future... the progression of the Lupus, Sjogren's, RA..... etc. has been extremely bad in the past 6 months.... so we both maybe having to use assistance to walk etc... anyway, just another "piece of the pie" of life... when things like this happen. You don't want to face these parts, but there comes a time you have to.... it sucks... but it is one of those "necessary evils"...


Question for those of you on "daily prednisone"? What dose do you take if you are on a daily dose of it? I have been on a maintenance dose of 2.5 daily, which honestly I cut down, it is supposed to be 5 mg. daily.... but the doctor told me as long as I was feeling okay, the lower the better... BUT when the doctor put me on the 60 mg tablets (2 20's daily) for 5 days... the swelling in my ankle is almost gone, and I've noticed some of the fatigue better, and anywhere I have any type of inflammation going on, even with the "asthma" issue, that is so much better. BUT we know that another "necessary" evil, is this "wonder drug", prednisone, or the "corticosteroids" .... they do magic... but they also can freaking wreck your body at larger doses for an extended time if taken. So, now I face another dilemma... do I ask to have an "increase" of like 10 mg daily.. or so ... I fear I will blow up like a balloon and have MORE issues caused from the prednisone... gosh this crap sucks. 

Wanting to try and Give You an Update

Of course many of you already know about all that has taken place with myself and my husband, the accident, DC and the entire gamut of the past three weeks. What began as something so wonderful, was so abruptly ended in such a disaster.

I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.

I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.

Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.

KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,

For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...

I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..

I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I         KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..

More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

Sharing an Article from "Mind Body Green" about "10 Things about RA"

I am happy to share a great and informative Article written by Tami Caskey Brown, from the (IFAA) International Foundation for Autoimmune Arthritis! She is one huge asset to the advocacy to help the fight on RA and the other Autoimmune Arthritic Diseases! I happen to have the great privilege in getting to know Tami and also help her on the great work she puts in on the "Media Awareness Hotline" portion of IFAA's fight against these diseases. The link below is to her article on the "Mind Body Green" Website! Please check it out as well as their site!

"Mind Body Green" 10 things I wished Everyone knew About Rheumatoid Arthritis

http://www.mindbodygreen.com/0-11806/10-things-i-wish-everyone-knew-about-rheumatoid-arthritis-ra.html

You can see more about what is happening at IFAA and what the "Media Awareness Hotline" is all about. It helps to stop articles, papers, news and media items that contain "misleading" or inaccurate information on RA and the other AutoImmune Arthritis Diseases.

International Foundation For Autoimmune Arthritis Media Awareness Hotline

http://www.ifautoimmunearthritis.org/Awareness_Hotline.html

(Edited AAI & Decisions of Life) "Murphy's Law... or more like Rhia tumbles once again down the hill..

Dammit!!! I am so Miffed and Ticked off! Something happened and an electrical transformer blew and shut everyone's electricity off!!!!So, when that happened EVEN with a surge protector! So, I am trying to use an very OLD laptop that sucks!!! We are in the process of ordering me a new one, so I am stuck with this for now. I wanted to let everyone know. PLEASE BARE/BEAR or (maybe I sound like a "grouchy old bear)...  with ME a couple of days. I have some of my files on this one, but I have lots on my external hard drive that this old lap top won't work with!!!!It takes what seems like hours to even post here!!!! I am just feeling like hell just opened up and swallowed me today!! Everything that could happen I think happened, I dropped all of some of my pills in the floor and on the cabinet. I went to the market, and dropped a few of my plastics (card) in the floor. You name it, it has happened. Then as I said all of a sudden the lights were gone, and I heard the "bang". And I was the one that called it in. We had no lights for about an hour. lights came in, everything great EXCEPT ME!!! I am not sure I will make another blog post until I get the new one. And I will post this there so anyone coming to my blog will understand. I sat in the floor and literally cried my yes out under my desk, I was SO UPSET!!! This is the LAST thing we needed, We are already strapped for the green stuff, and now I face this. And this is no "loaf of bread" to buy...

UPDATE to the DAY from Hades : 

I did get the new IMac ordered earlier this week. :) I also did get to finance it for UP TO 6 months and no interest charges. That is awesome! I hope to pay it off the first of January, but at least I have an option and do not have to fork over money to them for interest. I got the message this morning that it is on it's way via Fed Ex. It's coming from California. They say "estimated" to arrive by next Tuesday! Let's freaking hope it makes better times than that since Fed Ex has it now. I pray for tomorrow... LOL.. but I have a feeling it will not be delivered tomorrow even if it does arrive in Dallas by tonight or early morning. Although if I would have not stood around trying to decide which one I wanted it may have arrived today. Yes, I know, patience is a virtue... and all things that are good, are worth waiting for... and the days go by quickly, it is a weekend before a holiday, relax... you can do a few things on this "dinosaur" of a laptop. Actually I could do most of my stuff on my I-Pad, which is faster. Yet, the I-Pads' keyboard and myself do not see eye to eye. I have a difficult time doing a huge amount of keying in on it. I do recall that I could use  my wireless (and by the way solar powered) keyboard with it. Although by the time I go through all of that, my new IMac will arrive and it will be a mute point. Besides I have PLENTY I can FIND to do at home. From moving Winter clothes to the front of my "walk-in" (might as well say go in inside ways if your lucky) closet (we have to "invent" closets in this house when we bought it, there were NONE) and putting the Summer stuff at the back, if possible. PLus I can look around and see that as MUCH as I love "knick-knacks" , keepsakes from trips, and just in general vases, glassware and so forth that have some kind of sentimental value to them for me, I have TOO MUCH STUFF now! Our home is very small. And believe me, I've had to get in the "extreme" parts of decorating when we moved in. LOL, and in some ways not just "extreme" more like miraculous ways to make space for everything. I still love it, don't get me wrong, but with all of the problems with my hands these days not wanting to cooperate due to the RA, and the advanced damage in my thumbs especially, I just can't keep all of it washed frequently and/or dusted, and I am beginning to look around, feeling like I "pack rat" as we call those who save everything. 

I know my husband Jim, would say that my type of "rat packing" is more or less a great thing of sorts.  If I save it, then i have some way in the back of my mind I will re-use it. If not then it goes straight to the recycle bin. If it can't be recycled in this silly small town, then I take it either where it can, or give it to a place here in town called "Souls Harbor"... sounds like the name of a place to be "harbored" from being out in the cold or something! LOL! Actually that name has been with it ever since it opened I guess. I recall as a child my parents taking things there. Everyone in town says first thing if you are talking about getting rid of something, take it to Souls Harbor. Actually as crazy as it may sound... many things for instance like my "precious" old computer chairs, old vacuum cleaner, along with several items that either "need" a slight fix, or we decide we don't need that are larger items such as that, we put them in the front lawn out by the street, with a "free" sign. By the time you go inside and come back out in less than an hour it will all be gone!   There are a couple of men that collect scrap metal, old washers, dryers, and furniture... and take it where it can be recycled. As far as anything else, these new light bulbs, plastic bags (if I even have any, I use only reusable ones for the most part), in cartridges, old glasses and anything that can be recycled that I know about, I do so. 

Needless to say, part of this post is definitely about autoimmune illnesses and how they effect our daily lives. Things such as clothes now days with the closet so small, must be arranged as much as possible so I can reach them, or even get to them. I have two racks on one side, and the top one is almost impossible for me to reach up to now, thus my "current" season clothing is put on the lower racks so I can reach them. About the dusting all of "memorabilia" I have. That is another nightmare now days. I was able to do so fairly frequently. Now I do well to get the floor vacuumed, dusting around just where I need to, baking or cooking, doing laundry, and just the daily chores we have in life, much less making more work for myself by having to clean and dust intricate items, or just finding a spot t store them in.  It is about time for me to have a "throw out" party. Everything that I feel is in the way, is not in 6 to 9 months, has been not read (although I find it very hard to get rid of any books)... but magazines go to our local library, good clothing either to our local place that take clothes to help others, or again our Souls Harbor takes good used clothing in and sells it for pennies. 

I know many of you are thinking this post rings a bell with you. Women especially tend to be more sentimental about items such as that. We want to save them for a good memory, or to hand down to our kids, or thinking we just can't throw out something that could be useful for something someday! Then you are ran over by a Mack Truck of Autoimmune Arthritic illness/(es) ; only to discover we may have the "mindset" to keep those things, but our bodies have a totally different opinion!

        

Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.
With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”
Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.
Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible
Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.
Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.