Always Looking for the Sunny Days even though the Cloudiness and Fog hang Around... dealing with symptoms...

Okay, well I've missed out a couple of days dammit with this stomach mess. Not sure what is gong on. But, I do KNOW I am SICK of it! I am a bit better today so far. I've tried to not drink or eat anything I think might be causing it so badly. The vertigo just has to run its course usually then gets better. What I am concerned about, is why this time it is so bad, and why the meds I take for it are not calming it down as usual. I am still doing some research myself and I am sure since I am honestly WAY OVER DUE for A scope to check out my esophagus and stomach, that will probably be where I am headed. I know I have Barrett's Esophagus. I really should have had it scoped again over a year or more ago. But, with everything else, I keep having to postpone it. Now with all of the problems I have, I am concerned if the dysplasia, where my actual stomach lining grows out of the stomach and into the bottom part of the esophagus, and can cause cancer. But, I just dread any other "surgeries" etc> I am so literally sick of doctors, medications, insurance, pharmacies, no one can get their crap together. I've had an ulcer before thus one of the reasons I am on Nexium, plus of course GERD. but even the Meclazine I take for nausea and the motion vertigo. It just seems what ever is going on, still to me is totally separate from the Lupus, Sjogrens and RA. One good piece of news! MY ORENCIA FINALLY CAME IN today! After being off of it for at least three weeks, I feel may have some to do with how I've felt this past couple of weeks. When you begin to research Lupus, Sjogren's, RA, FM, ME CFS. and any and all of the other AI illnesses from MS to Diabetes 1, there can be a million symptoms, all of them similar, and they may or may not have to do with the autoimmune illnesses. Of course the problem I can already tell from that is patients (meaning us) and our doctors, whether PCP, Rheumatologists, or other specialists, tend to get "lackadaisy" and "automatically" no pun intended blame it on Lupus, RA, and so forth. So, each time a new "symptom" arises, all too often I feel it is kind of "'blown off" as to whether there is something "new" causing the new symptoms, or is it indeed the AI's. I realize that is is very difficult, and in some cases probably almost impossible to defer one from the other. Even with many types of tests, lab work, studies, and so on, still there may not be an "answer" other than due to one of the AI. That is scary though. What if, and I am just "saying" what if myself, or anyone with stomach issues and the nausea, vertigo and so forth left it unchecked, and went on either with the doctor knowing or just figuring on our own, it was "just the AI" and more symptoms, and it was something worse? What if it were stomach cancer, or some type of other cancer such as leukemia, or the GERD had really done a number on my esophagus and that dysplasia is much worse than it was. Or what if it is yet another autoimmune illness, or any number of other chronic diseases that can start out with the exact same types of symptoms. So, even though none of us want to jump the gun per se', running off to our doctors each time one little thing pops up or changes, plus we are all in the place that, oh well, they will blame it on the Lupus anyway, yet something else that may need other treatment, surgery etc done. A great for instance was my double hernia's early last year. I was told by three different doctors those "lumps" were nothing to be concerned about, and they more than likely were not hernia's. Then I still feel uneasy, so I go to a surgeon, who sure enough says right off it is not just one hernia, but I had two... one on each side...So, had I listened to those first 2 or 3 medical doctors who just seemed to not want to really find out for sure, they blew me off. Then I do find out I have hernia's just as I had suspected all along. We for the most part, have a "gut" feeling, again no pun intended, about our bodies. For those of us with chronic illnesses, we especially tend to watch out like a hawk for any type of new symptom, or something that seems to be "off" and not quite right. Yet, often times I know for myself, I go into the physician's office, and I just feel like if I am going to get the same old answer, it is the "Lupus", "RA" etc... then why... and if it isn't or they feel it may not be, then here goes the 50 "shades of Testing" that runs up expenses, and takes away our precious time. Even with many new tests, there still may not be any "one" answer, if one at all. I have found that even with the double vision, that started so suddenly out of no where, and has gotten to where I have it all the time, unless I wear my corrective glasses with the prisms in them, I have constant double vision. Some of you may recall the entire ordeal I went through for at least 6 to 9 months or more. I saw 2 or 3 different eye specialists, a couple of different neurologists, my Rheumy, my PCP, and in between I am sure probably someone else. I also went through exam after exam, test after test, loads of blood work and even a "biopsy" on my temporal artery. The specialist felt I had temporal arteritis, and it did make sense. But, the very treatment for it was something I was already taking, just not in as high of a dose as they use on that illness. So, I also found out the biopsy comes back all too often "inconclusive" thus I may have had it, but they didn't really get the exact YES, but it was not "negative" either. It took months and months, a couple of different pair of glasses, and just all kinds of neurological testing. One of the Neurologists said he felt I had Myasthenia Gravis which is another autoimmune disorder, and that will cause the symptoms I had and also explain where and why they were showing up at that time. Yet, still there is no one exact science about Myasthenia Gravis either. Just like MS, which I could have also, still there is one test that they can do, and again it is not always "exact"... It might be negative, and I still have MS, or I may show up positive, and be negative in reality. So, as we hold hands, together one next to the other, remember for one, you are never alone... there is someone out here, that can empathize with you, and totally understands because they are also experiencing some of the same things, whether it be illnesses, or any other number of other explanations. You can bet money on that there are one or usually many more of us with the same situation. Gosh, I can count on my hands, toes, 50 times over at the number of people who have been down almost the same road as I and the rest of us have. I've managed to feel "well enough" today to get some cleaning done, baked a lemon pound cake, did some other cleaning here there and yonder, vacuumed, and even colored my hair (of which I am not thrilled, it is way much darker than the last time I did it with the red).... but I also know it will fade out pretty quickly, and then won't be so very deep red... the color I used before came from Avon, and they quit making the product line! Plus I didn't keep the number or part of the box so I could try and match it up and I picked what I thought would be close, but it is still much deeper reddish/almost maroon than I expected.... so I hope maybe, my stomach is settling down, along with the stupid headache. I need to run errands and get to the market tomorrow, so I need all of the "wellness" I can get hold of for tomorrow. It will be one of those busy days. Anytime I head to the market and have a "list"... a long list, and then coupons, that means a longer trip that runs into hours if I have lots to stock up on and to use coupons on....

Lupus, RA, Sjogren's and Vertigo, Nausea, Odd smell and/or Taste

I've been "under the weather" for some reason the past several days. I've had a bad bout with my "Vertigo" and this one seems to be worse than some others. I've been so nauseated, I can barely get off the sofa. Everything smells "odd" to me, and even things I usually enjoy eating, now just taste off... sometimes so bad I almost am sick just smelling it cooking. I've also had a headache off and on with it, and my head just swims even to the place this time my "body" in itself does the movement ordeal again. I've researched just about everything I can, and in any way I can to try and find out some way to pin point whether this is a "stomach virus" or is it due to the RA and Lupus. along with that fact is also I've been going on three weeks without my Orencia. So, I wonder if that lapse since the pharmacy and the insurance could not get their stuff together. Hopefully tomorrow it is supposed to come in... yet as I said, I'll believe it, when it is here and I see it! It has been one red tape mess, after another trying to get all of them to get their heads out of their butts, and get things rolling. Even after they got EVERYTHING that they needed, I STILL had to CALL THEM MYSELF this morning to ensure they DO mail it out!!! It has just been a nightmare, and what is worse is I feel maybe the Orencia has not been doing such a great job.

I also have to question whether this is totally something else, and not actually Lupus/RA related. Since so many things can happen, and especially after having a compromised immune system, I never know what the heck will happen and when it won't. I just hope to find myself much better tomorrow. I've been so bad I haven't really been able to sit much here on my computer and post much. I hate leaving everyone without a fresh post daily or more than one!!! Bear with me, for I hope tomorrow shall be a better day....

"Go Red For Women's Heart Association" Today is the National Wear Red Day!

https://www.facebook.com/goredforwomen?pnref=story

PLEASE TAKE A MOMENT TO SHARE THIS OR SHARE YOUR STORY AND SPREAD THE WORD ABOUT WOMEN'S HEART DISEASE!

IT MEANS A GREAT DEAL TO ME, SINCE I HAVE LIVED THROUGH 2 HEART ATTACKS... ONE AT 40 YEARS OLD AND ANOTHER AT 50... AND I SURELY DON'T WANT A REPEAT OF ANOTHER AT 60 IN A FEW YEARS!!!

RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...

Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.

It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.

I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.

Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.

Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.

For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.

I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.

There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.

Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.

I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.

We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.

So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?

I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?

Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.

I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.

I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.

You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.

So, today... I dedicate each page of the book I am writing to YOU!!!!

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.