Showing posts with label autoimmune diseases. Show all posts
Showing posts with label autoimmune diseases. Show all posts

Wednesday, October 28, 2015

UPDATE!!!! Pain pump stall, My Mom's health issues and finding out today about this breathing problem and hoping it is NOT her heart valve & dealing with LIFE and Autoimmune everything!!!!

Okay everyone, please PRAY for MOM and MYSELF! She sees the Cardiologist this morning, and I PRAY her shortness of breath is NOT her HEART! She has a very "leaky" valve and I think I explained before why the shortness of breath... and our Cardiologist has had it under control with medications, and her not taking in as much fluid daily... but she has not been well at all over the past 2 months or so... and now her Kidney functions are low, which they were a bit better earlier this week but she still has to see a Nephrologist next week. I am praying the shortness of breath is possibly allergy related, because she does have allergies, like many of us, developed the late in life.... but if it is her heart, it could mean open heart surgery.... AND as far as my pain pump... I am NOT out of the woods yet.... it appears that it "restarted" itself out of the stall on Sunday... which is weird, because the Rep from Medtronic that saw me last Friday, had turned off the alarms, so they would not drive me nuts, but I kept hearing it go off, until Sunday.... but they had turned the medication basically to a minimum so I could take oral pain meds until we do surgery to replace the pump.... SO, yesterday my pain doc... did put my meds back going as they were... and he told me, not to get too excited yet, because it could do this again, and for the next 48 hours or so, I am having to watch it very closely... BUT, he also made a mistake when he reset the pump to send me the meds.... I have an "optional" Bolus every 8 hours... I can give myself an extra amount of medication... well he sat it WAY LOW rather than were it should be.... it was supposed to be 1.001 and he missed the decimal and put it at .1001 which is a HUGE difference... so now my bolus is really not doing a thing for me... that is just nothing compared to what it should be... so I called yesterday and left a message... but I guess I will here back today sometimes.... so between all of that, Mom, and now it looks like this stupid other "lump" on my right thigh is also in the process of going to "abscess"... it is now turning red and appearing like it might... plus I had been running fever off and on for a few days... which I thought was the pump issue causing it, but now I thinking this stupid lump could be the problem... when it rains it comes a flood on my life it seems.... lots of other things also... so there is what I know for now.... I appreciate all of you that are praying for us.... Rhia

Tuesday, August 18, 2015

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click



Saturday, August 15, 2015

Coping with Loss - Life changed by Autoimmune Illnesses, & all kind of other health ailments, complications, & the thought of a chronic illness taking your very life away...

Over the past several years the subject of having autoimmune illnesses, along with my other health issues.... many of them due to the AIs... a voice sometimes brings up the loss we suffer when the very life we have made is jerked out from under you.

You begin to research, to see specialists, to try medications that can have as bad of side effects as the disease themselves do... you know that once you find out that your total immune system has been hijacked by these horrid diseases, your chances of survival becomes less.

We ALL have times we think about dying... passing away to move from this world into another, whatever you think that may be for you...

Whether you have a brush with death from a bad accident, from another disease, such as cancer, diabetes, or possibly some other issue from Mother Natures storms, to those who choose to walk into a public place and open fire on unsuspecting individuals, or crash planes into buildings, that would just as soon blow themselves up in the name of their religion... there are many ways that some of us may face whether our time is up on Earth, and feel that near death experience is often a wake up call, for us to do something different in our lives.

I have encountered more of these, than I care to admit actually. A 4-wheeler accident at 25 years old, nearly within inches as I centered the front of a car, and I went completely over the top of that car, after my mouth hitting the hood ornament, and for fortunately the momentum threw me completely on the black top behind it and not through the windshield... or I would have never made it...

Then at age 40, I suffered a heart attack, that at first the doctors thought caused severe damage to my heart muscle, and it was not until I was transported to Dallas and had an angiogram, was I told I was extremely lucky, that there was very little damage to my heart... and


in 2010 after a night of being suddenly so extremely ill that I literally could not walk, and throwing up green bile... having a gallbladder removed, which something went terribly wrong and I had to spend 6 weeks in a hospital in Dallas, and at the time again, they were not sure exactly what was wrong.. I was in and out of surgeries several times, and supposedly one issue with a cut in one of my bile ducts. It was allowing toxins to pour into my abdominal cavity, thus again I was just meant to still be here, because I finally did get well, yet before I left that hospital I suffered a 2nd heart attack. Due to all of the stress emotionally and the toll my body had been through, the felt it was more from an artery in spasms, and I have so far not had to have any type of stent etc... all so far is being treated with medications, for which I am grateful.


Till this day, even my own Primary Care Doctor tells me, that I certainly was meant to be here, because he feared for my life when all of that went down. Now, with the Lupus, RA, Sjogrens and so forth, along with medications such as Predisone, Biologics, and my other health factors, if I allowed myself to, I could bury myself under neath my bed, and not face life daily.

So, a couple of days ago, I was listening to the radio while running errands and Tim McGraw and his song, Live like You were Dying ... came on... I have always loved that song and it hit me after the ordeal recently with the cellulitis, so many antibiotics, the stomach and intestinal whoa s I have been through, along with the concern over my own need for lower lumbar/sacral surgery... and of course knowing these AI illnesses, along with my other health issues leaves me many times over of becoming ill with something that could take my life in an instant... my Rheumatologist has reminded me more than once my chances just due to the RA of having a heart attack are like 50% more than a person without RA.

I have a dear friend, and she is suffering after being cancer free for over 30 years (she had cancer while we were still in high school and beat it), it has case back and has truly shook her to the core...  things for her truly have been a great deal like my own, with those people you had come to county on, suddenly just walk out on you... when you need them the very most.... and even with someone there you still feel frightened by the what if this, that or the other...

I also find myself, as well as many others, not wanting to talk about the subject - of course it is human nature to hide those feelings and try to surpress those horrible thoughts, yet they have a way of creeping in and I have found my own best way is when it comes up in thought to myself, I must work it all out and not try and ignore the facts... facing all of the possibilities for me has been a long road, but it has truly helped me to learn to deal with those nights I wake up drenched in sweat, crying out, and jumping up for night terrors.. plus for myself the more I try to keep it under wraps the more I find myself overly stressed and making myself almost ore physically ill.


So, what is the point of this post? For one, due to the complications of myself at the moment, and all that those medical issues cause, along with the concern over my Mom her back problems, and getting her the doctors and proper treatments to relieve the pain is has... I do better putting either pen to paper, or fingers to keyboard I guess you could say and writing about it... it helps to purge those feelings, of course they certainly will pop up again in the future...

Plus I DO WANT others to realize being frightened of dying, or feeling like your life could be taken away - way to QUICKLY when you still have so much more life to live is difficult to deal with.... so by my own posting of this, I hope to help others to get in touch with the reality of one of these and/or other chronic illnesses taking you away for good from your loved ones... and working through those feelings...


Here are the lyrics to Tim McGraws song....

"Live Like You Were Dyin'"


He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

[Chorus]

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

[Chorus]
Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.

To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.




I am not quote sure exactly what point, if any that I am making as far as my readers. At the moment, a part of this posting is for myself... facing my own mortality issues, facing that my last living Aunt, could pass away at any moment, yet that is with all of us... we could be in a horrible accident, or be struck down by an emergent health problem, a stroke a heart attack, an embolism...

We could walk into a shopping mall, or a movie theater, or into your local Wally World, and someone decide to bomb it, or open fire on us, the innocent ones, even at church, it seems no one is safe anywhere, anymore... Our world is and had been tested, our nation tested and tested again... from strange and new diseases, from MSRA and bacteria that are resistant to all medications we have now... we could be gassed by something dropped into our air, or in our water... we could have a plane fall out of the sky, or a local lethal business, such as a chemical warehouse, or other flammable place catch fire and explode to rock a small town or a huge city... each day we face the fact that something could happen and so many horrible, unspeakable acts have happened over the last several years... and they will continue to happen... those who should NEVER ever own a gun, having them in their hands and putting us at their mercy...

kSo, my point for myself.. is to do the very best I can to live my life, like the next week, the next day, the next hour... the next moments could be my last... to feel prepared for the unknown... for the time, I am called upon... for the moment, I have completed my visit here, and move onto a place perfect, without hatred, without stress, without want or need, without greed, without hunger, where everyone is totally happy, and everyone loves everyone else... so for you.... and me.... think of things you might do to Live this Life as we know it, Like we were dying....





















Friday, July 31, 2015

How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?

Good question! For myself, YES, it is!  Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.

We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.

things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.

Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...

Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???

I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....

Here are a few links also I want to share with you...

http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/

http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin


http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus


http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook

By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..


http://www.medpagetoday.com/Rheumatology/Lupus/52814


Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...

http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp

Sunday, July 26, 2015

Even though Dealing with Autoimmune diseases, Chronic Illness and/or Chronic Pain, every once in a while it is OKAY to find some humor in life.....

Some of you may recognize this as soon as you see it. If you are a fan of a late night television show, then I am sure you will.

Plus if you were "born" in the era of a certain band, that had a couple of huge hits, you may also recognize this also.

Actually, right now I am in such "blah" (for lack of a better word) mood right now.

I found out that this "lump" on my left top thigh, was NOT just any old lump. I have cellulitis and that is why I have it there. I had been out about 6 weeks ago or so, cutting up some tree limbs, after all of the wind, rains etc... earlier in the spring, and putting them in a trash bin, so they could be gotten rid of. Well, I never really "felt" anything but I must have accidentally brushed my thigh against one of the limbs, and a very tiny piece, just a sliver of "bark" I think must have been just like a "sticker" or splinter and was in my thigh. A couple of days later, I noticed a red spot there, and it was kind of sore, so I was watching it, putting antibiotic cream on it, and keeping it covered. I just thought I scratched my leg doing something, I did not know at the time something was "in it".... but then I did see several days later, it looked like it has a bit of infection in it... just maybe the size of a head of a match, so I cleaned around it, and was able to kind of push around the outside of the place, and I saw this tiny piece of something come out of it. And also there was a tiny bit of yellow, but it was really nothing I considered to be horribly bad. I kept cleaning it, and squeezing around it, and for a couple of days, again, I might get 4 or 5 drops of what may have been a bit of infection out of it. But, then it began to seal itself over, and I no longer seen anything red, or warm, or looked like possibly more infection. So, I went on about my life, and really didn't even think much about it at all.

Then, it must have been about 7 to 10 days later, I was doing something and brushed against my thigh, and I noticed a small "lump" kind of about where that place has healed over. It did not appear like there was infection, not warm, not red, just a small lump under the skin. Well, as the days went by, I began to notice it was getting a bit larger. I still really never gave it that much thought, and in fact I figured with the way my body reacts with my autoimmune issues and illnesses, that it formed kind of a scar tissue under the skin. Yet, I continued to notice, that lump was growing, and when I decided to have it looked at, it was about the size of a silver dollar. It was not "soft", but kind of hard. It is sore to the touch, and as it got larger I noticed it would hurt a bit when I walked. So Friday, after doing some "google" searching, I kind of got concerned. More about the possibility of it being some type of cancer actually. From some of the different searches and sites I went to, all too often I noticed there might be someone who does get a piece of sticker, or glass etc in a foot and so forth, and after that heals suddenly a lump appears and it is cancer.

That is when I put the two and two together, and knew that lump had to be due to the sliver of whatever was in my thigh. OF course I have heard of cellulitis and was more familiar with it, in those with Diabetes. I knew that pretty often due to their sometimes not healing over quickly enough and also being a bit immune compromised, especially their feet and legs if injured can quickly turn into cellulitis, and even worse.


But, I guess my conception of "cellulitis" was more of "seeing a place, red, warm with fever, and opened up, possibly even have infection draining out of it. I did not know that you may have it "underneath" the top layers of skin, like mine, forming a lump of infection, that grows quickly and of course can spread quickly also.

But, once again my "gut feeling" took over, and I felt it was something that needed to be seen ASAP. Even if it were to be a "tumor" it still needed attention and I knew I should not put it off. So, Friday, early right after my PCP's office opened, I called. They are only open a 1/2 day on Fridays, as far as seeing patients, but she must have went back and asked my doctor whether I should come in or if it could wait until next week. So she came back and told me to be there at 11:30 Friday morning. Again, I still was not really considering "infection". The "signs and symptoms" I am aware of about something such as this, is what I said above... red, hot, feverish, possibly broken open, and/or infection that you can "see", would be what I would look for if I suspected infection.

Needless to say, I definitely learned something new in the medical world. I have cellulitis. So, #1, I DID GO and not put it off. If I had that may have landed me in the hospital for IV antibiotics (I am just praying the 2 oral ones I am on gets rid of it all)...both of them very high powered strong medications for infections.

Even though it had "appeared" that the sliver came out, and what bit of infection I got out, did not rid my body of the bacteria underneath the skin. Thus, this lump would have either continued to grow, spread the cellulitis somewhere else in my body, or it sure would have began to grow red, warm, and possibly show outside on top of the skin. It was bad enough I went for that many days without seeing my doctor. But, HE HOPES these two antibiotics will do the trick.

Anyway, one of them Rifampin has to be taken on an empty stomach! Well, you can imagine, I am already of the tendency, to get sick to my stomach, so put that in there, along with the other one Bactrim, and all of my other medications... and I feel like hell honestly. I have read and re-read about both of them, especially "usual" side effects etc.

Of course nausea, upset stomach etc.. is a major one for just about any type of antibiotic. But, I am also very fatigued, in fact as much as I wanted to go to church this morning, I just felt I a not in any shape to go at the moment. I have not slept well again in weeks.... between the stress of my own health problems, and now my Mom's; along with trying to get her to PT 3 times a week, plus she needs an MRI, plus our pain doctor is going to do the Epidural Steroid Injections... (transforminal). They in fact called Friday while I was in the doctors office. I guess they have already gotten the "okay" for the injections from the insurance company, and are ready to set a date up for her to have the injections done. On top of all of that, fortunately, up until about the last year or so, my Mom has been in good health, for her age. She will be 80 next month, and other than controlled high blood pressure, and a "leaky" valve in her heart, that for now they are also controlling with medication, Mom has no clue about any of this and the way they have to do things now. So, when she would go to the doctor, there was none of the extra tests, and so on... she thought she would just go to my pain doctors office, have the injections done the same day, and come home. As I had explained, no doctor that is a legitimate doctor, will put injections into your spine, without a visit to his/her office, having to schedule it with insurance also, and all of the other red tape that now goes along with procedures. So, that has not helped either. I have began to see, that even though I may go over things with her several times, she still may not "get it"... and I find myself explaining things over and over to her, often more than I think I should have to... but I know she is also concerned, been in more pain, that probably she ever had in her life so far, I still get concerned that she maybe a bit more "mixed up" at times than normal.


So, in some ways, I am also concerned about her memory... and even some of the things she tells me about, that happened a very long time ago, and I a JUST think to myself, wow did that happen? And if it did, at my age, why did I not know that years ago. I was around my hometown most of my life, so some of what she brings up and tells me, almost sounds "too odd", strange, "off", to be true in many ways.

Now, onto the REAL REASON for this post, and it seems I ALWAYS have a way of going "full circle" back and forth in order to "say" what I want to in the first place. That is the true "writer" in me for sure...

I am posting this graphic for all of you.... let's see if you recall anything about it! I know for me, I just about ROFLMAO when I hear or see it!




Monday, June 29, 2015

Ankylosing Spondylitis, Spondyloarthritis, Axial Spondylitis, AI, Hip,Lumbar/Sacral Spine Pain, Surgery, and Tests, Discogram

This comes at an EXTREMELY important time in my life as of now. I saw on my orders last week for the "discogram" that "Spondy" was also what my Orthopedic Surgeon felt was a part of my issue. I already have severe osteoporosis, which shows in my lumbar spine, my hips (both), and then in my "femoral" portion of my leg. 

Honestly, I didn't know a great deal about Spondylitis, Spondyloarthritis, or even Ankylosing Spondylitis, until lately. Of course I knew it is an autoimmune disease, and knew some things about it, yet, not until I began to have the very severe problems with both hips, especially the horrid pain, I can't sit for long, or walk for long... many things do really make the pain much worse. 

Then I began to look a bit into it, and mentioned it to my Orthopedic Surgeon. 



This in red represents my own DEXA scan (a 2nd one) and the results of what is shown to be severe osteoporosis.

DEXA Scan Results for myself in 2013

Summary :
 
Osteoporosis in the lumbar spine, femoral neck and total hip. The
bone density at the spine was overestimated due to degenerative
changes, as suggested by the significant discordance in the
density of the individual vertebrae.
Area BMC BMD T T% Z Z%
L2-L4 43.92 33.73 0.768 -2.8 71 -1.8 79
Total Hip 34.44 21.84 0.634 -2.5 67 -1.9 73
Femoral Neck 5.34 3.06 0.573 -2.5 67 -1.5 77

Comments:
DXA of the lumbar spine (L2-L4) reveals a bone density of 0.768
g/cm2. This value is 2.8 standard deviations below the mean for
young adults, and represents 79% of the mean density for
patient's age. Femoral neck bone density is 0.573 g/cm2. This
value is 2.5 standard deviations below the mean for young adults.
Total hip density is 0.634 g/cm2, a value that represents 2.5
standard deviations below the mean for young adults. Hip density
represents 73% of the expected density for patient's age.

___________________________________________________________________________________

These numbers show my hips, lumbar spine as talked about and femoral neck bone all show severe osteoporosis. Thus this could be also associated with spondyloarthritis, axial, and so on... As horrible is it is to know I am "shrinking, now by almost 3 inches in the past about 5 or 6 years... and knowing a fall, or sometimes with severe forms of this, you can actually do nothing but walk across a room and a hip break, or the compression fractures are usually a huge concern, which is one reason they are considered about anyone "shrinking" We all do to a certain extent as we age, but this is different for sure. I was happy to see this article and wanted to share it with all of you. 


 http://www.medpagetoday.com/Rheumatology/BackPain/52341?xid=nl_mpt_DHE_2015-06-29&eun=g773630d0r

Monday, June 15, 2015

I am here still with the Flares, and more... Lupus. RA, Xeljanz, insurance, and Chronic Illnesses and Pain

 I 've added 3 photo's of what the side on my right knee looks like now.

I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;)  But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)

Wednesday, April 8, 2015

My First "Victory" 25 Chapters in my latest book written and a huge word count over 50% finished!!!!


I JUST officially HIT Chapter #25!!! In the latest book I am writing!!! I now have 47,383 WORDS!!!! I am so elated. Much of it of course will have to be gone through, spaced, and so on... going to take a great deal of going over, and over.. and then going over it again to have it to the "publication date"... But, having that much into "copy" for now is exciting!! Jim just looked up the "typical" word count for a book such as this, and it is between 80,000 to 90,000 WORDS. So, I am at my half way or more point in the writing process... I have to admit I HATE proofing!!! I get so tired of looking at it over and over.. so I always have Jim also proof it for me several times also. That way, hopefully between the two of us, it is "readable" and makes sense. I know with this "brain fog" that seems to be growing worse by the day, I tend to find myself "repeating" something that I may have written a few weeks back. Now, to "take up" for myself, often that is because some new light has been shed on the subject, or I've gotten more news, did further research and so forth. Thus I may post on the "same subject" several times. But, I do find myself "forgetting" much more than I used to just a year ago. It really concerns me... BUT for NOW I am going to feel very "elated" that I've made the half way point in my book that shall be titled "It's Not ME! It's the Disease! ( actually when we first came up with the title, we almost wanted to ad in "It's not ME Stupid! It's the Disease! Yet, I don't want to make people feel stupid or any thing like that... because these illnesses are extremely complex, and my entire reason for writing them, this one especially is to help make people understand these illnesses better.... also I am now Kicking the Can around on making this a "2 Part" book... In other words, publish this first one, yet move on forward and write #2 - like they both should follow one then the other.... I am still thinking on that one... and I'm not sure how I feel about this whole "Volume 1, Volume 2 etc ordeal... I am not a huge fan of it in the movies, and the only time I really loved it is in the 4 books "Twilight, New Moon, And The Twilight Saga, Part 1 and art 2" Those really and truly "fit the bill!" But, of course I will always be a writer and author and if by the Grace of God Go I, my intentions of course are to publish more in the future. But, I've thought about taking a stab at writing "thrillers" based on "medical things gone bad" etc... there are so many things out there now, that would make for incredible thrillers with the medical issues today, that I have really given that I very big possible yes... plus I am still writing on the "Texas Sayings" so it will of course be much smaller but I am also going to publish it too....

Thursday, April 2, 2015

The Realms of My Own Happiness #HAWMC

Check out my true happiness and happy moments below!  #HAWMC


Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.

It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.

For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.

If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.

When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.

Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.

Rhia Steele
April 2nd, 2015


p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...

#HAWMC

Wednesday, March 18, 2015

Sjogren's and Dental Issues!!! Needs to be a Priority!!!!

I realize that this is in Oregon and one of the dentists that is trying to get ORAL HEALTH a priority in Oregon's Health Authority http://www.oregon.gov/OHA/Pages/index.aspx I gather much like Texas and our (DHS) Medicaid and so on, this is kind of the same thing. The HUGE ISSUE and of course I ran into this right middle of the road like a brick wall - that even though ALL of my DENTAL ISSUES were caused by an Illness SJOGREN'S - NOT ONE Dentist even took my Medicare Advantage Plan or any type of Medicare Coverage plus even if I could have went through numerous appeals, Humana probably would have not covered but about 40% of the 15,000.00 PLUS - (turns out to be over 15,000.00 due to the dentist "leaving off" the charges for the LAST 11 TEETH pulled the day my dentures went in... which was another $147.00 EACH for the 11 - making it another about $1,517.00 or so OVER the ORIGINAL "treatment plan" I agreed upon and signed before the work began. This is a total outrage!!! There is NO WAY ANYONE, and most certainly MOST ON MEDICARE OR DISABILITY can AFFORD OUT OF THEIR POCKETS $15,000.00 IN DENTAL BILLS!!! But. I had NO CHOICE!!
As I have posted over the last year when all of the mess began with my teeth suddenly "rotted" off at the gum line and then falling out! I had 4 of them within 4 months happen... well after the "whole mouth X-ray" revealed ALL of my teeth were doing the same.... So, here I am with all of these Autoimmune diseases, already a HUGE chance of infections due to the illnesses and the medications I am on... and by the way that $15,000.00 was much higher when I went for 2 other opinions!!! That was the Lowest in the ballpark figure...

Anyway, I have told myself and said it here also... WE MUST FIGHT FOR DENTAL HELP!!! When a chronic illness brings on this kind of destruction, there should be coverage through medical insurance... the proof of how the teeth "rotted" showed it was definitely Sjogren's that caused it... so there is NO question as to a medical issue causing the dental stuff...
Anyway, this article caught my eye from Oregon... and I wanted to share this with you also... this is another HUGE PRIORITY (among ALL of the others we have with Autoimmune and Autoimmune Arthritic Illnesses....

http://www.oregonlive.com/opinion/index.ssf/2015/03/lawmakers_should_commit_to_sta.html

Thursday, March 12, 2015

Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....


Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115
 

Tuesday, February 3, 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

















Thursday, December 18, 2014

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….