A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

Information from the IFAA's Study On Autoimmune Arthritic Illnesses and What Some of the Results Are

As new data comes out of the study that IFAA helped to get initiated and to get relevant information out to everyone that really is vital to our lives and how these illnesses have and will effect us, I wanted to post this from the IFAA


Through 2014, IFAA led an Early Symptoms of Autoimmune Arthritis study to determine all symptoms that could occur amongst six diseases within the first 24 months after initial onset. From these symptoms we are narrowing it down to 0 < 12 months per disease and 0 < 6 months per disease. While we are currently analyzing everything from joint and chest pain to eyes and canker sores, we are finding out some very interesting things that will help us create new Early Symptom Disease Models for the diseases individually and the group (so that undifferentiated patients have a better chance of diagnosis with treatment in the future).

So how many of YOU had 'brain fog' in the first 24 months? Here's how many had it in the first SIX MONTHS. It's not so abnormal, is it?

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

#Hashtag, Lupus, Blogging, Life, and the Life of everyone who deals with Autoimmune Illnesses - patients, caretakers, family and friends...

My dentist said it was NOT an invasive as a bone graft, and once that is done, then around the middle of November I go back for another set of X-rays to see how well the jaw bones are filling in and healing where the teeth once were. I pray they will be ready for the mini implanted pins and I will get over all of this dental mess once and for all. It has just been not only a pain in the mouth, the wallet and has been a massive pain in the butt. Anyone that ever has to go through the entire process of having all of what is left of your teeth pulled, to then go directly to dentures, and them NOT hold as well as they should... YET, you must wait patiently or for some impatiently... for the bones to "fill in" where the teeth were before you can have the "mini implanted" little bars to hold them secure... I HONESTLY FEEL YOUR PAIN AND SHARE YOUR NIGHTMARE!!! It was not really having the teeth that were left pulled 5 at a time... the "laughing gas" helped to get through that. Besides I am not afraid of needles, even though they are never pleasant in especially the roof of your mouth anywhere... or even the pulling of the teeth in itself. Other than mine being tough as hell to get out (you would think the Sjogren's would have had them degenerated enough that they would come out easier. That is not the case. Mine had a tendency to break, split, fly over the room, and give the dentist a run for his money, as my Dad would have said... But, that last go at the rest of the front teeth, which I had 11 left! Then to have that sewn up and put the dentures right in over the top of all of that where they were pulled... was not a great experience either... Honestly, I still have soreness around my lower part of my nose, and upper lip, even the "hinge" of my jawbones on one side wants to almost "pop" out of place at times. Many people say I am "LOUD" when I speak, but it is surely NOT from my mouth itself being big... in fact it is just the opposite... my mouth is so small, that is why my teeth were so crowded together, even after 2 or 3 molars being pulled thinking I would be getting braces years and years ago, and my 4 wisdom teeth laying cross wise down in my mouth having to be cut out because there was no place to go to pull them out.... I have always had to use a small fork and a small spoon to eat with... there is no way I could try to get a larger spoon in my mouth... like normal people do.... I got my "mouth" from Mom's side of the family as far as bone structure - a great deal like my Grandmothers on the maternal side... yet I got my Dad's side of the family - Teeth... which we all my son, my Dad, My half -Brother, the larger two top teeth in the front, and just a bit larger teeth that just did not fit very well into a smaller framed mouth such as mine. I went for eon's hating my teeth, and you would very rarely see me smile in front of a camera. So, I did get my wish of "beautiful teeth"... after I was 54 yrs old, and had to have mine gotten rid of and had "falsies" LOL.. put in... but hey, they are MINE and they are beautiful... sometimes we get what we want, but just not in the way we expect it to.
Thus, I am trying to once again be patient, hope that tiny little hole that is driving me nuts on the top right hand, where there is that little oral-maxillary fistula or fissure... that just makes it sound HUGE, so I don't really like calling it that , but that is the
medical term for what it is.... By the the while I am still trying to figure out the           #hashtag business of #rhia or #lupus or #rheumatoidarthritis or hummm what about #drcampo wonder what that would bring up... I do have something else I am thinking about doing... and if you care to join in, I would love for you too... One of the bit online health sites had a "blog" kind of contest that everyone could participate in for 30 days during a certain month of the year. Well, somehow I got my wires crossed (what is new)  so I had posted here and on my blog all about it. Then I got to seeing some of what I had actually found online was last year during a month, not new for this year... so of course after finding out for sure from someone there, I took all of it down from my FB page and from my blog. BUT... I had this idea since I sometimes have a difficult time trying to decide what "subject" to go with and write, I would use some of their ideas that I enjoyed thinking of writing about and doing for that the month of November on my own blog. I may mot be able to do it exactly ALL 30 DAYS... but it would be fun to just pick one & try and do one a day and write about an entirely different subject each day. NOW the FUN part is I would LOVE TO HAVE SOME OF YOU GET ON THE BANDWAGON and POST also on my blog... I could post the original idea, along with my "views" on the subject, then have each of you that wanted to - to put yours under it where you click to go and make a comment!!!! I may even make one post and just keep that one going all through the month, doing the same... so if you would like to joint me, feel free to take a look at my blog. I will post a few topics to get started with, and if you can think of something you might like to blog about or read about feel free to private message me here, or on Google since Blogger is part of Google... and we will see how much fun we can drum up :)  I will decide whether to begin "here" on a blog post with the ones for November OR whether to put them on another page... I will let you know for sure this week sometimes....

Perfection we find in one rose... and perfection we seek always in ourselves and into what we feel inside is meek....

Lupus?RA?Sjogrens?FM?CFS? Early Onset Parkinson's or Bartonella??? Here are some links and ideas to consider....

I am sharing this with all of you, especially those of us with Lupus, RA, MS, FM, ME/CFS.... ALL of us have had years before a diagnosis, then it seems we go through more than one most of the time... and then wonder if "the doctors have it right" or if they are also grasping at straws, and giving us a "diagnosis" to just calm out fears. I know for myself that is true. About a month ago, I saw a dear friend from high school, and am very happy she is back in our hometown. She had mentioned some information about a particular illness that usually comes from being around cats, or other animals, or things like fleas, ticks, than can be carriers of the illness Bartonella .... she was telling me about a doctor who of course more of them on the side of the "animal type" cat scratch fever... that just about all of us have heard of. The "symptoms" can be almost to the "Tee" of Lupus, RA, FM, CFS and so forth... severe fatigue, low grade fevers, flu like body aches and pains, joint pain, headaches... many of the exact same issues we have, brain fog, that are associated with all of these illnesses. Well, I took what she said to heart, about the doctor now believe that this illness, can very well be, the great imitator of some of these illnesses.... and later people have found out, they may not be "ill" with things like Lupus, or RA, or be manic depressive, or even one woman was diagnosed as schizophrenic... but they were infected with the Bartonella bacteria. Thus, it also goes right along with being very close to Lyme disease, and also I just has mentioned, after hearing from a friend that has "early onset Parkinsons'" that Lyme disease can be the great imitator of early onset Parkinsons.... so all of this kind of hit me like a ton of bricks... it could be that there are "many" or at least some of us that don't have any of these chronic illnesses, BUT have gotten Bartonella one way or the other (by the way I've been bitten badly by one of my cats in 2005 while in CA) and I've also had two dog bites in my life... so I have to wonder if in fact there is a possibility that all of this is some how related... I also know if you walked into one of your doctors offices and mentioned it, they may look at you like you are crazy and call the nut house to come and carry you away... but I have one link I am putting here and will put this along with more links on my blog....
http://www.galaxydx.com/web/human-health/ if you are also interested take a look... it sure does ring bells with many of my symptoms.



http://www.cvm.ncsu.edu/news/2012-05-04-Uncovering-Bartonella-the-Stealth-Pathogen.html 

http://www.lymedisease.org/lyme101/coinfections/bartonella.html 


http://www.cdc.gov/bartonella/