Showing posts with label brain fog. Show all posts
Showing posts with label brain fog. Show all posts

Monday, June 20, 2016

Fight ALZ! "The Longest Day" Brain Health, Cementia and Alzheimer's June 20th and the Month of June


I AM A voice for my mom, WHO JUST PASSED AWAY A WEEK AGO LAST THURSDAY OF ONE OF THE MANY HORRID DISEASES OF DEMENTIA! I Also watched her parents, both of my Grandparents suffer from these diseases, and I am concerned not for just myself, but my kids, their kids, and the generations to come... of ALL families... we NEED to END ALZ!

Thursday, May 5, 2016



Please Share your experiences and information this month on Social Media about Lupus, about new medications, new clinical trials, and all of the new ideas out there about Lupus!

Friday, July 17, 2015

How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....

Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS"   keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED  a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent"  - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...

Monday, May 11, 2015

A VERY "BLAH" Monday!

Well for many of us we got to celebrate a wonderful Mother's Day!!! Then for all of us, like myself, that got tremendously hindered by severe weather, we shall have to have a later celebration.

Well, I hope to be able to. I changed my reservations AGAIN for the 4th time for Winstar in OK. Yet, even this next weekend shows that we could be right in the same shape again, bad, bad and more bad weather. So, we shall see how the week goes.

Plus I am not feeling well at all today. I really felt lousy all weekend. Between allergy mess, my hips and legs, my right shoulder blade for some reason, and just a general upset stomach, and feeling like the fatigue has kidnapped my body and take it over, I just feel like HELL honestly!

Of course for now the "severe weather" has moved on, but I am sure it will come again soon, from what my joints say, and my body, plus of course the "forecast".

So, I am not going to be online much today. I got involved in baking, and all of that yesterday, so I really didn't spend much "down time" for Mother's Day. So, today I am headed for the sofa with my pups to hopefully get some relaxation, rest, and get this awful fatigue under control once again.

I am never "far away" so send me a message, email etc... I will be checking my computer off and on during the day....

By the way, our friend and client, did go through about 4 hours of surgery on his brain last night due to the hemorrhage. The removed a piece of his skull in order to create room for the swelling and to relieve the pressure from his brain. It seems he is "stable", but they are still not quite sure what caused the brain hemorage yet. He is somewhat alert, and responding. Plus they said his "breathing" is over and beyond the ventilator, so that is a very good thing. But, he has NO movement at all right now on the left side of his body. The bleed seemed to be on the right, so that would make sense.... I shall post more later when I get updated! Thanks for all of the thoughts and prayers.

Sunday, May 3, 2015

Lupus awareness Month Started May 1st"

Here we are, the time flying by. It seems like just yesterday was the beginning of the new year. Now we are already experiencing "spring" in the air, Fall has faded, Winter has "winterized" and with Spring Comes "Lupus Awareness Month"!

There will be MANY activities this month from walks, to all types of other advocate projects that you can help with.

The most important thing you can do is "Spread the Word" and educate others about Lupus!

I have literally been surprised at how many people, including  Medical Professionals, are not familiar with Lupus. Difficult to believe with all of the information out there about treatments, medications, new medications on the horizon, social media, U-Tube, and many, many of us are continually "hooked into" being online in some realm.

So, it is time to tell your story about Lupus. Tell a friend, post it in your local newspaper as an Op-Ed, or send a Letter to the Editor. Post a poster on your Facebook, or blog.

There are many ways you can reach out and let others know about this serious, life altering, life taking illness.

Tuesday, March 10, 2015

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....

Friday, February 13, 2015

The Ever Spinning World of Lupus, RA, Sjogren's and All of the Hectic Life Things to be Done

Today, like many others I have so many decisions to make, things to do or not do and put off, things I want to do, albeit before our weather goes to heck in a hand basket as the saying goes, and so forth.

I feel here it is another Friday, the weekend almost here... by the way
Hope you and your sweetheart have a wonderful day! Even if at the moment you may not have someone special to share the day with, share it with yourself and do something nice for YOU!

I have just found out that I have an opportunity to meet several of the ladies of the IFAA that I am also an Active Volunteer!They are going to DC also the same time I am for another non-profit. So, we are thinking rather than me fly out on Tuesday, which was going to be hard on me anyway by the time I land back in Dallas, then drive 70 miles home, and it will be around 10 pm ... and my night vision is not all that great. So, I could be more rested, plus come back earlier in the daytime, just after rush hour, so that would be awesome also!!! So, that is one of my decisions and I really need to make the change TODAY as far as my flight. We were thinking about going to the Casino on Sunday and maybe even spend the night. But, the weather is supposed to be just hideous. 100% chance of rain all the way there, and then even if we spent the night, the same on Monday. So, we may postpone that and go the following weekend, although it does not look much better right now.

I wanted to stay here at home today, and in fact gave up a chance to go ahead and have my hair trimmed, but I was a bit worn out, plus have my head spinning in about 30 directions. I NEED to begin getting more and more writing on my book completed. It seems there is something everyday that takes my mind away, so I am either gone physically doing something or I am mentally too tired by the time I can even get to the computer.

So, life goes on and on...  here is a post from Facebook I wrote talking about time, and just how quickly it passes you by....

Before things get to hectic! I have about 25 "irons in the fire" right now!:) I wanted to wish everyone a very nice Valentine's Day tomorrow! I happened to have "almost" been a Valentine's Baby. My birthday is Sunday on the 15th! Not really loving the fact I am "half-way" to 60... yuck that sounds old! Yet, I feel my "work" here is not completed thus I must accept the fact, the only way to be "here" on Earth and do what I love is to try my best to accept that each year will make me a bit older. I also hope that in with that age, I continue to "learn something new" every day, and my hopes are that I will be able to somewhat have a bit relief with the right medications from the Lupus, RA, Sjogren's and so forth. Even if it means surgery down the road on a couple of joints, if it keeps me up and on my feet, then I will be a happy camper. These years seem to have just flown by too quickly. Jim & I celebrate 10 years of marriage in April! It seems like yesterday we met on Alki across from Seattle, overlooking the "Sound" and all of the beauty that is there. I still miss it and always will. I seemed to be "healthier" there than any other place I've been to. Not sure if that was due to the weather and climate, or if I just had not gotten into the horrid symptoms of the autoimmune illnesses. Unfortunately, I had lost my job, right after Jim and I met. Actually I resigned. And that was really due to ongoing health problems, mainly Migraines and severe conjunctivitis. I could not get rid of the eye problems. Each time I would heal up, in a couple of days it would re-appear, and since it is so contagious, plus I would not have been able to do the type of work I was doing at the bank there, I began to miss lots of work due to health. Honestly, it was the STRESS of that job, and the two "supervisors" who were "witches" and that is putting it mildly. The stress each day of dealing with those two, along with the tedious realms of dealing with Real Estate Files, and all of the paperwork in them, the job was very, very stressful without having to deal with two backstabbing, back biting, lying women. They had been "friends" for many years, and had both worked there many years, thus they spent their time covering one another's butts... But that is past, I am back in TX now, in my hometown... and I've let go of the anger and bitterness that I first had right after having to resign. Later, in fact, I've become online friends with one of them. She was my direct supervisor, and since then she had a very bad car accident and bless her heart, dealing with lots of pain from the accident.... and the bank actually closed since I left I found out. Anyway, time has gone by much too quickly. My 1st Grandson was only about 5 weeks old when we arrived back here. He and now his younger brother are both in school. When I think about just how quickly life passes us by, it makes me want to make sure those I love, and I care for dearly, whether family, spouse, and friends... that I let them know. So, if you have a "special someone" then I wish you a very beautiful Valentine's Day together. If you are alone right now, then do something very special for yourself tomorrow!!! You can "love" yourself and show how much you do. Whether that means a special cup of coffee, a walk if it is pretty, buying that "something" that you've wanted and so forth... Enjoy! Don't let life pass you by.... as one of the songs in the country songs lists.... "No Time to Kill" by Clint Black... and then another one is about how quickly your child grows up, becomes a parent themselves, and goes on to have their own family, all within a breath's space... in the blink of a eye... time can pass you by... and as my favorite saying out of a song in fact goes... (the chorus that reads "When They Carve My Stone All They Need to Write on it... Living in A Moment You Would Die For" that is what I want on my Head Stone someday - the chorus of this song....
sung by

Ty Herndon

Living in A Moment

Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for

Tuesday, February 10, 2015

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....

Tuesday, January 20, 2015

"Autoimmune Epilepsy"? - Stiffness Onset, feeling severe fatigue, headache? What is it?

I had an "episode" last Friday. It is something I had experienced perhaps 2 or 3 times in my life that I can recall. But, never like I did this time. It was early, and I was getting out of my computer chair, and began to yawn.... but then my entire body became "stiff"... like every muscle "locked down" and the more I tried to stretch out, the worse it seemed to be stiff. 

I had originally posted my "episode" on Facebook. I've got to get out of the habit of posting there, when I have LOTS to say. I need to post here first, then put only a "bit" on Facebook with a link to my blog.... thus here is the post and more about this "Autoimmune Epilepsy" information I have came into as I did some research... And of course, I am "under the weather"... or not feeling well at all. I've got some kind of stomach mess going I guess. I was having issues yesterday with this very strange "yawning" episode ordeal. It's been a long time since I've had it happen. I would yawn and it was like all of my "muscles" in my body would almost "lock" as I tried to stretch. I can't really explain it, but I guess the feeling would almost be like someone having a "seizure" and all of the muscles get "stiff" and rigid all at once. That is kind of the "feeling" I have with this. I've had it happen before but it as has a long time ago. I already was very fatigued and had a very nauseated stomach early yesterday morning. In fact I took medication for the nausea before it got bad and got on the sofa. And I also ran a low grade fever, like around 99.7 to about 99.9 yesterday all day long, had a severe headache, and my neck muscles are so sore I can barely stand to touch them. Of course every morning when I first get up, I really can't tell how I feel. My feet always hurt so badly, I can't hardly stand to walk on them until I have been up and around for a few hours. Anyway, I think my butt might be back on the sofa today. I am still not feeling "great" at all. Probably a flare, I am going to say. Unless the fever was to get higher than what it had been yesterday, any lower grade fever usually goes with one. And even a low grade fever will make me feel like hell, and give me a bad headache. Anyway, I am still pissed because between the pharmacy and my new insurance they still have my scripts screwed up. I am not sure if either of them know what the hell they are doing. Plus I am already getting letters from the stupid insurance co. wanting my doctor to say "why" I am on one medication rather than what "they" suggest... well in the first place the 3 they suggested are NSAIDS of which I CANNOT TAKE - due to my heart and my stomach, plus what I am on is a muscle relaxer, so why the hell they think a stupid NSAID should be what I am on is beyond my thinking. I can already see it will be hell getting all of this through and over with until I get a fill on ALL of my meds and see what they are going to bitch about, and how many they are going to have the doctors freaking send a form on. It just gripes my butt they feel they know "more" than your doctor!

Anyway, the other funny thing that happened last night! We were watching a movie and all of a sudden my pup, Bubba started barking. Within about 10 seconds we started hearing all of this loud popping, banging, and I could see "colors" through my blinds outside. We ran out the door thinking something was very wrong, and there were fireworks going off left, right and center, right what looked like the middle of our town. We live just a stone's throw away from the main part of town. This went on for about 7 minutes or more. And it began to appear it was on purpose and professional. Lots of dollars of fireworks were going up in the air and it was definitely awesome... except for the smoke trail it left when it was all over with. About that time, the phone rings and I told Jim I bet it is my Mother! Sure enough he answered it and she was all in a tizzy thinking this was happening just a block from her house! LOL!!! Then it dawned on me that I remembered reading something about the City having a parade etc for our High School Football team. They won state here about 3 or so weeks ago, so the city was going to honor them. Sure enough I grabbed the newspaper, and I was right. That was going on right around that time, and I guess was the "finale'" when the parade and so forth was over. OMG, though every neighbor was out, all of Mom's neighbors were all thinking something horrible was happening. But, I don't think they could actually see the fireworks like we could. They are just a bit farther from the main street where it was taking place, plus the trees over there are so tall, I think most of them were only seeing the smoky trail it was making as they went off. Anyway, Jim got her settled down and told her, I had read where they were having that last night, so that is what was happening.... so far no terrorists were shooting off fireworks in our town...LOL... guess not really funny since Lord knows where those freaking nut cases are and what they might do. I think Jim put up the "front page" of the magazine from France the other day and I told him that may not be a great idea.... you never know when those totally insane people might be and what they might do if they find anything to try and pin on any Americans. We all know they absolutely hate us... and we would be "extinct" if they had their way.... just insanity.... so if I am not online much today, it is because I am on the sofa. I just still feel really "off"... everyone else take care and have a good Sunday....(here is a bit more on the subject of the parade and my Mom and her ordeal out if it....

 This just had to be posted... it is funny, but it is also a realization of age, the quickness of times that things change in this world, and how the elderly get so ether corn
And if either of my KIDS tell on me for telling this story about my Mom, I will beat your butts... LOL... but Saturday night they had a parade here in town for our High School Football Team. They won state this year, and they were celebrating 5 State Championship Wins that we have had since 1975... well there had been a couple of articles in our daily paper here about it, and I knew they were going to do the parade. But, I don't think they mentioned anywhere I could find that they were going to put on a "huge fireworks" display as soon as it got dark right after the parade. So Jim and I were watching a movie, and the dogs "heard" something first, and one of them barked a bit. Then we turned the movie volume down and sure enough you could hear this loud "popping" noise almost like gun fire at first. But, we both went outside and saw all of these fireworks going off near down town. We weren't but about 4 or 5 city blocks away, so we could see it over the trees, and it went on for at least 10 minutes or so. We still didn't really know why they had went off, but what did dawn on us, is that it was done "professionally". or the city would have never allowed it to happen. Well, about the time the last one went off my phone rang and I told Jim, I bet it is my Mom... now it still had not really dawned on me about the parade, so neither one of us really knew why they were going off, but it appeared it was done "on purpose", not some accident etc... sure enough my Mom was in a panic... she asked Jim if we heard it and he went in to telling her yes, we did, and yes we saw all the smoke afterward, and about that time then it did dawn on me about the Parade for our Football Team. Sure enough I grabbed the newspaper so I knew that is what it was, even though they had not mentioned the fireworks. As Jim tried to tell Mom what the deal was, she got almost pissed and said why would they fire "fireworks" off right by her house?? And we were puzzled... she thought due to the smoke and the way it came over town and she never saw the fireworks at all. She thought they were doing it right around the corner from her where our old hospital building is.... LOL!!!! Jim was trying to tell her no, they were down in town around the old building and where people who used to work at Ennis Business Forms parked on the "parking lot" right at main street... well she wanted to argue so he just said "okay" and all is fine... and I was indisposed at the moment in the bathroom, so I would talk to her the next day. Well, I go over yesterday, and she said did you see where they were trying to clean all that mess up in front of the old hospital from that fireworks mess??? I almost wanted to tell her to shut up about it, but I explained NO!!!!! it was down by the old Ennis Bus. Forms parking lot, and we saw all of it. What was in that parking lot of the old hospital is a huge dumpster full of junk they have taken out of the old building there, and were using a small bull dozer to dump it into that dumpster... it had NOTHING to do with the parade or fireworks what so ever... and if she had been that way all week last week, she would have seen them cleaning up a bunch of stuff they were hauling out of that building... In fact I had told her twice last week I saw them cleaning out some stuff and wondered if someone finally bought that property... the building is in such an old state and the code violations so many, they really can't "repair" it, it would be cheaper to tear it down, and then rebuild it, because of the shape it is in... anyway, she was still so pissed about the fireworks, and then it was even more funny. I got home, pulled out the newspaper from last Tuesday, and on the FRONT PAGE... a HUGE ARTICLE about the PARADE ON SATURDAY NIGHT for the State Win in Football... but I didn't see anything about the fireworks... so that was kind of an error because with as many elderly people that we have here and especially living relatively close to down town, I am sure many that really don't follow our football team. So with the world in the shape it is in and all of the stuff going on, I do feel they should have definitely put something in about the fireworks and made sure that people knew it was going to happen... like I said we really was not sure at first, until I recalled something about a parade in the paper, and that is when I put it all together... but Mom was still just pissed about it all... she HATES FOOTBALL anyway.... so for her it made no sense at all.... IT was so funny!!!! Just because she was so adamant that I was nuts and it was right by her....LOL!!! and as I said MY KIDS BETTER NOT TELL HER I PUT THIS ON FB!!! 

Now I realize I posted a bit about this a day or two ago... but I didn't get the entire thing in there, thus I wanted to "repost" it with all of the "good stuff" in it.... anyone who knew my Mom would totally "get" why this was so freaking funny... I mean she is getting up in age, and I know there are often things she just does not "get" anymore... and maybe never had honestly. But, when I went back over there yesterday and she was still going on and on about how they should have "never" done that... and how horrible it was and so forth, I just had to post the entire conversations.... so take this multiply it by about 100 times and think of all of the "things" in life, her, like many older citizens just don't get... computers, "automated teller machines", debit cards, washing a car at the car wash, driving in the dark, you name it.... it really at times is almost sad that she is so "frightened" of so much in life.... here this year in August comes her 80th Birthday... seems impossible, yet there is still so much that just either scares her because she has not been exposed to it, or she fears learning anything new, she absolutely does not even know what kind of batteries go in her TV remote, and if I finally get her to write them down. and understand it. Then there is no way she can figure out how to put them in the proper direction.

It just seems so terribly wrong to know she struggles with these things, and without someone right here to help her, there would be a great deal that just would totally be things she never could do herself, or my other fear is her getting taken advantage of, if something needs repair at her house... I have to continually warn her to throw away "junk" mail - stuff like "insurance" for your water pipes, or people calling her all the time about trying to "sell" her something, or get her to change over her "electrical" carrier... they just target and prey on the elderly people knowing so many of them either don't understand or they have no one to "watch out" for them.... it is a totally crazy and insane world we live in. Even myself, especially with some emails, for the most part I can detect a "spam" or some "trap" email that can reek havoc with my computer, etc... yet these "spammers" and others that send out these emails get smarter, more aggressive, yet sloppier all the time. But when you get something and it may refer to one of your credit cards, or a company you may do business with, they can almost make you truly believe it is a "for real" email that is totally critical... so if those of us who "know" and are wise enough to "smell a rat" per se', yet can almost be fooled, then people that aren't as educated, or have not grown up with all we face in the daily realms through this walk of life... then someone has to try and look out for them... I feel for those that don't have anyone... we hear all the time how people get "cheated" out of sometimes their life savings by these bullies out there....

Thursday, October 30, 2014

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 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.....

Monday, October 27, 2014

#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....

Wednesday, September 17, 2014


I have lots to catch you up on over the next couple of weeks. I promise I will. I am on a new RA/Lupus medication, that is not a biologic. I will explain what my Rheumatologist told me, and how he has come to the conclusion, that if I can, maybe trying to stay away from a biologic, other than trying Orencia, would help to possibly reduce the number of infections I continue to get. I had been ill from way before Christmas last year, and was ill when I went to D.C. at the end of March! I was having a flare, but I was also I believe even then developing bronchitis that turned into double pneumonia. But, until I was running 104.5 degree temperature and almost out of my mind hallucinating from the high fever (I NEVER have a fever)... thus now I certainly know what to look for if I expect I might be having a new infection coming along.

I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.

Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.

We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.

I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.

I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!

On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions.  Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!

It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.

I shall put on more tomorrow... as I get some of my other
chores out of my face...

Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)                                                                              

Wednesday, July 30, 2014

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

Tuesday, July 22, 2014

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.


I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 

I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia

I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at or and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!

Sunday, June 8, 2014

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. 

Tuesday, May 27, 2014

"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night

Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.

I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".

May 1st, 2014

Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.

although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.

I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.

What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.

May 26th 2014

It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.

I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....

Wednesday, March 19, 2014

More on RA- Critical News when it comes to how it Systemically Effects the Body...

There are several great links, article and information that is critical to know about  RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG!  "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis,  can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.

When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO  and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.