Living Life In An AutoImmune Illness "Zone"....

Life as we have lived it... and now Life as WE that deal with AutoImmune illnesses Live it Differently  - Yet Happily!

As some of you know, I live in TX, just below the Dallas area. WE are having our first blast of very COLD weather today and over the next few days. We are now under a Winter Storm Advisory, with possibly sleet, ice, and some snow. Usually we get more ice than the fun stuff, snow. As I was talking about on FB, how I can "predict" the weather almost better than the forecasters can, the memories came pouring back to me of when I was able to go snow skiing. For years, before I had all of the illnesses happen, we went snow skiing, every year the week of my birthday. It was our annual vacation, that I saved up for as soon as I got home from the one we were on. I put money back in a "Christmas savings" fund every week for the entire year. Part we used for Santa and Christmas and the other was for our trip. Those are still some incredible memories for me. That was a time when I was on those skis, I felt completely "FREE". All of the snow and the forests, and just a quiet feeling of peace always came over me as I started down the mountain. Don't get me wrong... I took some hellacious spills. We always made videos so we could laugh about each other and our "Oh Crap" falls. You knew when one of us was going to take a very funny fall, because "Oh Crap" was all you heard! ;) Anyway, below is the post from Face Book that I wanted to share with everyone here. 

This may not sound like a "post" about autoimmune arthritic illnesses, yet it has all to do with then for me. Now I can no longer snow ski. In fact there are many things that have been crossed off my list, because I no longer do them. Mowing my lawn, and tilling the garden. Going to the lake and being in the sun. Making plans like a trip for something to do months away. I never know even a week before something is planned if I am going to be able to go or not. There are times I feel so bad that I cancel doctors appointments. I am just too fatigued to go, especially if the appointment are in Dallas. 

This comes to the place of why I can't do things any longer. It is certainly not age. There are MANY people I saw on those slopes as Wolf Creek Pass that were in their 70's. I am sure some of them lived close, so they have much more practice. But it is just the point "age" does not necessarily cause someone to stop doing things they enjoy doing. As you are reading this, I am sure you are thinking back to the times that are special to you also. Vacations, visiting family or friends, gardening, riding a bike, just a number of things that so many love to do, and do it. Age is not the factor at all. 

But, having an illness that can even strike when you are very young, in your teens, can stop you from doing many things that you loved to do, or would love to do. Is it a difficult thing to handle? You bet it is. I know I speak for not just myself but ALL of us with an Autoimmune Arthritic Illness, or any type of Autoimmune illness and/or Chronic Pain/Chronic Illnesses such as FM and CFS that also take away so many things in life that either we once took for granted; or at least never gave a thought that we would not be able to do them "the next time". Yet, it can strike anyone. Even though "women" are probably 80 more times or more to come down with one of these illnesses, men are also victims of these diseases. So, they do not discriminate when it comes to gender, age, or race. I have read articles and I am sure to do those studies that African-American people are more prone to these illnesses such as Lupus than other genders. I am sure researchers have been studying that one a great deal to find out why a nationality would make a difference. Also, why so many more women are much more likely to get the disease than men. 

My point to this is one, I did have some great memories flow through my mind when it comes to snowy weather. I also have these "blasting" memories of how much these horrid diseases take away from our lives. From changing relationships, families, jobs, and everything about your life basically, all of us can't help but be angry at times about it. Even though like myself, we come to accept it for the most part, I still feel at times like a piece of me has died... has left me... and changed me forevermore.

WE do learn to deal with it. I have in most ways. You find ways to compensate for what an autoimmune illness takes away. You learn new hobbies, or a different way to do them. You discover another way in a relationship to be close, and educate your spouse, and your family so they will truly understand the "why" of the things you can't do. 

As I often talk about my life, a flowing river, where there are bends, turns, white rushing waters, and then the bridges I flow under. The climb to the top of life's mountain. I scratch, crawl, and inch my way up, and sometimes I slide back down, as the rocks and stones may scar me, I still look up and know that is where I am supposed to be. 

For the rest of the year, and into the next year, I hope each of you who suffer and are inflicted with these still misunderstood life altering illnesses, such as RA, :Lupus, Sjogren's, MS, Still's disease, MCTD, UCTD, JA, pernicious anemia and the 100 other AI diseases out there, can look UP and reach up to see that you also can stand atop your own "life"s mountain".... and reach up to the stars... and feel whole again... even if that means you must "change" how you enjoy life in a new way!!!!


This below is a Face Book post from this morning... I wanted to say it also along with the above writing.... 

 I imagine you are probably getting it up there worse than we are. they have changed the forecast so many times the past week, I was not sure what it was going to do.  But my "bones" always let me know... My thumbs and fingers have been extremely bad this past week or so. Not just pain... now it is more of them not wanting to bend, I have like almost "zero" flexibility. I can't hold onto things That has been going on for a while now. That is partially why I suspected MS along with all of the other ailments. I have just lost so much grip and strength in my hands, arms, fingers, and I notice it lately even in my legs. IF I am up for a long while at the house doing things, or I go to "Wally World" and walk for a long while in there, my legs feel like "rubber bands" of jello ... I feel as if I am going to just collapse. I guess partially illnesses, partially all of the surgeries, and then I guess I have to account for getter older!!! Even though that is NT one I really want to ADMIT!  Kind of like my memory... if I forget, or can't remember, I blame it on the brain fog...  better than saying maybe I have dementia... You stay warm up there and out of this weather... and of course avoid all of the "no driving fools" that try to drive in ice. No way most Texans from in this part can drive on ice. HAHAH Many of them can't drive on dry pavement, much less wet or icy!!! Speaking about "black ice" on the roads. One year we were coming home from snow skiing in Pagosa Springs, CO... at Wolf Creek Pass (some great memories of snow skiing for me)... we left Santa Fe... and already knew it was a possibility the roads could be bad. We got to the main highway from Santa Fe (I-40) to head to Amarillo state and all of a sudden we felt the van just slip a little... it was a solid sheet of thin ice on the roads and of course you can't see it. Anyway, we slowed down to a crawl. In fact we happened to have borrowed a friends van so we sure as heck did not want to be in a wreck, much less a friend's vehicle.. suddenly here comes an 18 wheeler SIDEWAYS beside us just flying past. He jackknifed it into the medium and then here comes several cars, and they were not expecting it. Each one that went around us were in the ditch when we got up ahead. In fact, we drove on to Amarillo, but it took us something like 12 HOURS to get there. We called 911 and reported the accidents, but the entire way there were cars and 18-wheeler in the ditches. It was nuts. Believe me I felt that the Lord was helping to drive that van for sure.

Fibromyalgia new theory on Adrenal/ Thyroid glands & certain chemical levels could be a cause...

http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/nov/11/fibromyalgia-indisputable-proof-claims-uk-research/



One of the largest mysteries I believe in the last decade has been(  FM) Fibromyalgia  and Chronic Fatigue Syndrome. There has been a tale to tell on every piece of the wide spectrum of these "illnesses", from it is that women are "nut" cases, it does not exist, to it comes from some type of tests on rats that was supposed to have been answer, & then it was finally and formally called FM, an illness.

Most of us that have an autoimmune arthritic disease (es), have probably had this be a "diagnosis" somewhere during your hunt for the "real and definite answer"... may not be "red" but truth is what we seek.

Then there is the huge dilemma that has been the talk of any and everyone that has FM and/or CFS(they seem to run hand in hand) from the Whittemore - Peterson clinic I believe right at the state lines of Nevada and Colorado. For several decades the talk about how almost every "well" person in town came down with this "yuppie" flu, I believe was one of the many names it was called over the years. Yet, as I think about the "glands" in our bodies and how much they control everything, it would make perfect sense that at least as far as the symptoms, "they fit the bill." Our Adrenal glands, including the pituitary gland, the thyroid gland, the adrenal glands, I think Just lately I found out there are like 400 glands in our bodies. Those two adrenal glands are vital for us to live. They control weight, appetite, have lots to do with hormones and how they are regulated in the body. They control your temperature, and without them would would quickly perish. But due to fatigue, lack of being able to withstand temperature changes,  and many other things that keep our bodies running.

If you are interested in more information as to not only adrenal glands but the endocrine gland system, you maybe quite surprised at what some of them are. Ovaries for one are an "endocrine" gland.

Onto this new article and FM. I've always in my own thoughts (I am NOT a doctor and do not perceive to be) just IMOHO, they are some type of an autoimmune disease.  AFter all think about HOW MANY OF US at one time or the other, or even now have, have had that diagnosis. Then how many of us felt we were given that as a "junk" or "Trash Can" illness, so we would shut up. Then they fill us full of antidepressants and tell us it is "stress" and "anxiety"... we need to just "chill" . As I sometimes say "just another brick in the wall"... now they are trying to convince you it is ALL in your HEAD! And the very sad thing is, there are doctors out there today, that have heard all of the reports, yet they still throw out FM, when they can't seem to find something to "stick". I thought the portion about "lab work" and those quote "normal" ranges that come from the labs frequently. And as I said on a post of FB, I've had it happen twice to me as of lately. I called them on it after I did some research, and U was correct. That "so-called normal" range was NOT normal for me at all. Both cases caused me to have to stop one medication and the other I had to take a new medication for. Had I not pointed those out to the doctors, it may have been looked at later, or possibly not until I had further symptoms. So, it is just another reminder to WATCH OUT FOR YOU! It is a critical thing each of us with these types of chronic illnesses MUST do, to have a better quality of life....

Technology - In Every Way & the Miraculous Way the Medical World Uses It

Man Kind, Medicine, and Technology...

To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.

(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!

        

Holidays and Autoimmune Arthritic Illnesses

After bringing up the subject of "holidays and Christmas" when I posted about sending card to the troops, it also again this year made me stop and try to figure out how we "do" the holidays this year. It seems to of course be an annual question now. Used to we always did the exact same thing. My husband and I cooked the entire gamut of a holiday meal. From sweet potatoes, to turkey with home made cornbread stuffing, we did it all "A to Z". So, our first several years together, even though it was just the two of us, our one pup back then Tazzy, and our two cats (who have now passed away, D-Link and Lightening) it was a spread of food, fit for any King! :)

As we moved to California, the day before Thanksgiving there, I had an accidental run in with one of our cats - Lightening. Actually not a "bad" something he did, but our landlady had some guys working on the windows. We were in a upstairs, 2nd story tiny apartment. My husband had just left for work and I heard one of the cats "crying". So, I went to see what was wrong and he was barely hanging on outside the bedroom window. He had gotten on the ledge and it had the screen off of it, so he slipped. Well of course instinct to me said help him, but what did not dawn on me, as that he was totally flipped out. So, as soon as I went to grab him, he bit down into my hand so hard that it pierced all the way through the skin under my thumb. I had several very deep wounds. He had seen it was me and he let go. Bless his heart he was scared about almost falling, and he realized he had hurt me. I was screaming to the top of my lungs, and crying, and calling his name…. so of course he knew I was hurt also. Blood was going everywhere. I grabbed a small towel and wrapped it around my hand. Then called my husband, who of course had a brand new job, that he had just began only about 3 weeks before that… it was a nightmare. He did turn around and come back home. We did not even know where the nearest hospital was there in San Pedro. We have just not been there long enough to know where anything was other than the market, and a few stores on the main road. I knew I needed a tetanus shot, and possibly antibiotics, plus the pain was so intense, I cannot explain how badly it hurt. Any kind of animal bite is extremely painful and since these were very deep gashes it was a nightmare.
Anyway, we already had most of what we needed to cook with and our neighbors had gotten to know us a bit. They were not going anywhere and we had asked them to come over, but since that happened we went to tell them it was off.  So, they came over and helped my husband cook!! It was so nice!!

Now just a few years later, neither of us "feel" physically like cooking that huge of meal in the about past three years. After promising not to succumb to "old" age, or getting "too lazy" to cook for the holidays. But, I guess I have had to "admit" to myself and to everyone there is just no way I can take all of that on… We have to freeze most of it, which is fine depending on what it is, or make my Mom keep some, or give it to the neighbors.

These illnesses change each of our lives in so many ways, in each and every day. Even the smallest of tasks that we used to be able to do without blinking an eye, now become some kind of monumental feat… including dinner for a large family. Just another one of the many, many ways Autoimmune Arthritis "hits" us in the gut with a hard punch at times. It was a horrid reminder over the weekend before when  i took Mom to the Casino. I never gave a 2nd thought to wearing my black patent platform pumps with this very long skirt (maxi-skirt) as I guess they still call them. Yet, as the day wore on, I knew that would be my last time wearing those heels for any length of time. Just to go to church, or something for an hour or so, or if I am going to be sitting down a lot, will be only time I'm ever able to walk in them. Those hours and hours and hours…. and probably about 8 to 10 MILES by the time you walk from one side around to the other and then back and forth again… you definitely get a work-out!

Even that…I was able before to have no problem getting to be checked in, bags to the room, parked and all done. Not anymore, just doing the Huge Hotel walk in itself, and getting around to the elevators that are several turns around from the check in/reservation desk. Then I was the one that did all of the parking, and walking, and then walking and picking Mom up at the door… I am now trying to resolve myself to the fact that some things I will still be able to do, but I must make a very "detailed"plan so I will not wear myself out before I can even have fun.

So, with every turn, around every corner… from the mountain top you trip and side down, only to crawl back up scraping your knees… still to shout Victory when again you reach the top… to when the oceans tides seem to want to blow you into the vastness or when the soft sands of hope caress your feet…. all can just "never" be… So, Accept and Rejoice in what you CAN do, and allow those things you CANNOT do, to be swept into the oceans of where you never have to worry over them again….