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

Wednesday, November 6, 2013

I MUST Tell OFF On Myself! Talk About Some SERIOUS BRAIN FOG!! (Comical for sure)

RA, Lupus and Brain Fog!



Even though I am not thrilled at telling off on myself, I have to tell this one. The MAIN reason is because every single one of you, if you have any of the Autoimmune Illnesses have had DAYS, or maybe more that SERIOUSLY you wonder if you are losing your mind.
Well, yesterday was one for me. I began with my mind seeming quite foggy early yesterday morning. Just reading a few news articles, and feeling like I was not quite "getting the message", to my typing being just OFF in all respects. I was having issues like not remembering how to spell a simple word, and as I said.. I must tell this one, ladies will appreciate this…

Of course I was headed to the doctor at 11:00 yesterday morning.  Well, I went to lay out what I was to wear, brushed my teeth, and decided this time to "dress first" then do my makeup (like many of you probably I for the most part put my makeup on first in my robe, then put my clothes on). I was dressing and I thought something did not "feel" quite right, but I could not really tell what was wrong exactly, other than the "tights" or whatever you want to call them, have a seam that needs to be inside the leg portion comes all the way up like that, then goes down the other leg in the same place. With these tights, it's like putting on hose, you have to put them on correctly or they just feel off.

Anyway, I went onto the doctors office. I was a bit early, so I went in and decided to use the restroom before I went in. So, there was a man standing in the lobby, and I thought when I had first walked in and looked at the women's door, I saw is closing. So, I thought someone was in there. Well, I waited and waited; not wanting to be rude, I did not want to turn the knob, or knock on the door until I waited a bit longer. Well, he seen I must have been waiting, so he pointed to the door, and told me that no one was in there. I was sort of baffled, because I would swear when I came in that door was closing as if someone had went in. Anyway, I still decided to wait until minute, and along comes another woman, appearing that she was probably pregnant, and she was needing to use the restroom also. She asked me and I said I believe someone is in there, but I did finally walk over, turn the handle, and low and behold….a huge "DUH" for me, hell it was empty!!!! Talk about embarrassed! The man had already stood there and told me it was empty, yet brain fog ON, I did not even check!

I was then of course felling like an idiot, and wished I would have checked as I usually do, when I first walk into the front door. But, I would have sworn that door was just closing as I came in. Thus I felt someone was in there. So, I go in,  I am trying to get those tights down, just as you would hose, where they "line up" when you pull them up. Well, I look down and there low and behold is the tag on my underwear! I looked again, and talk about feeling like I had lost my mind, my  underwear were on backwards!!!! LMAO!!! Well, I was now in the midst of not knowing whether to laugh like a hyena at myself, or get out of there and cry, because my mind had officially left the "building". Now, I know some are asking how the hell did she put them on backwards and NOT realize it! Of course, normally you would, depending on how they are made. But, this particular pair were all lace for one thing, and they were designed kind of like that when you just looked at them at a glance it appears the back and the from are "cut" the same. But, yet I had thought something was "amiss" as I dressed.

Okay, then here I am within a time span of about 2 minutes trying to decided whether to turn them around or just leave them. My only issue with leaving them, because n a normal visit to this doctor, your clothes all remain intact, I was going in to let the PA(physician's assistant" take another look at the lump on my lower from abdomen. So, LOL, I was going to have to pull the FRONT of those down a little bit so she could see what I was talking about. LOL!!! Okay I made the decision first of all I did to have time to mess with it, and I would have to take my tights off, turn my underwear around and them get those tights "line" straight again. It was near my appointment by then, and this other lady was waiting. So I pulled them up, was my hands and decided that I DO have a couple of pair of underwear that have a tag in the front. Besides all I was going to do, was grab both my tights and underwear and hold them down about to my pelvic bone so she could examine this lump. She was never know the difference, thus I went in, and she pushed, mashed, squished, massages, and I don't know what all else this freaking lump on my left side! Standing up, laying down, she had me lay down, yet act like I was going to sit a sit-up (like I could hold that half way for very long), along with the OTHER side since I thought I had FELT one on the OPPOSITE side but in the same area over the past few days.


Nonetheless, I found out as I said in my other post I was at least not TOTALLY NUTS, because I kept saying SOMETHING WAS WRONG! I had even thought HERNIA and looked them up to find out all about the 4 or 5 types there are. Which I knew about a couple, but did not realize there were others, mainly named depending on where they are located. I had research everything I could find as I "Googled", and continued when I described this "lump" to be a hernia. At the time what I DID not see, that a "SONOGRAM" often will NOT HOW a hernia!!! Okay, so that is why last week the sonogram showed "nothing". Furthermore, I know that is probably what my Gynecologist "felt" last week. She just did not realize it was NOT an ovary, it was the hernia instead. So, that cleared that up. I was told I had an over left, but on the RIGHT side, the left one they took out. So, at least I did have some relief in the fact, I DID KNOW something was WRONG! And I continued to search for some doctor that could figure it out! Now I COMMEND my PA for finding it. She told me, had she not seen several like this before, she may not have figured it out. Undoubtably, for some reason, due to the place are located even doctors that have practiced for years may not find it right off the bat. So, I again was happy to know it WAS SOMETHING, but I of course am NOT THRILLED with the fact I am facing probable surgery, and from what she said, both sides, because there is also ONE beginning on my RIGHT side as well. I had felt it and yes that is what it is.

So, after the "good/bad" news, I head to the pharmacy to pick up a couple of things, then go home. After I ate, took my medications, changed clothes and settled in, I decided that I needed to find out WHERE in my BLOG were the "Meta tags". If you are not familiar with the term, they are certain "words", in a web site that are put in the coding, in a specific place that helps people to find our websites in searches and so forth. Also the more searches, and having those correct "keywords" gets your site further up the "food chair" in a "search" such as on Google. So, that means MORE people potentially coming to your site, blog, etc.

I have done web design, so I was familiar with these tags. I also have done what is called "SEO" in the design world (Search Engine Optimization), the term, which as I said above helps also even more to "push" your site further up so more find you. Now, don't get me wrong, being I am in
"blogger" and I am using one of their "templates" … "mucking" around in their "HTML" code (the actual code or one of the types of codes used to make a website), is not a really fun party. It depends on how "easy" or how difficult the owner of the site has made it. Most usually have a specific pre-designed spot in your backend of the blog, so you just plop those words in such as for my blog could be (autoimmune arthritis, rheumatoid arthritis, lupus, sjogrens, AAI, MCTD, UDCD) etc.  The goal is to "match" the words most people searching for something like your site will "find" because those keywords helps them to get to your site. Okay, so I go in and find out I have to put this type of coding into the "core" HTML code myself. As far as I can tell, Blogger, for now, (and you would think of ALL blogs they would because they are part of Google), does not have an already pre-designed place for this type of coding. So, I go into where I can do this, I had the code, and put it in where I was supposed to, and it tells me I have some type of an "error". Well, I was baffled, because I had done things correctly as far as I could see. So, I try and look at the couple of "errors", and find nothing. Well, I go to look at a "preview" of my blog, and damned, the very last post I made had messed up "coloring". It did not look at ALL, like I had done it! So, I panicked. I began going through what I had done. Then even "reverted" it as far back as I could to their original code. Still my very last post looked wrong. I was tired, I had been through hell all day, so I decided to stop, it was not make or break last night, and try with "fresh eyes" this morning. Even my husband who is the EXPERT in Web Design and has been doing it for 15 or more years could not figure out anything wrong. Nothing appeared out of place and so forth.

Okay, go forward to the morning. I get up, turn on the coffee pot, go out onto the porch to see what the weather was doing, get coffee, and look at the current FB posts to see what IFAA and Tiffany, plus the others had said last night. I decide okay I have to "tackle" this damned code issue. I will be in a short while using templates to move a site over to a new place. So even though you don't "have" to code the "HTML" coding, it really is a HUGE help due to you being able to find a mistaken or make a change, tweak the coding, etc. I come here to blogger, I pull up my "other older" first blog I began, and changed it to the exact template my current blog looks like. Then I go into that CODE to compare the two. I knew I could find anything that was missing, or different like that. A time saver for sure. I could find the issue just looking at the code on this one, but it make take more time, thus I preferred to do it with a short cut. I am comparing the two, and I am seeing everything just as it should be! Not one little comma, or other piece of code was out of place or missing. I was just baffled!!! All of a sudden my brain come into a "LIGHT" and I decided to put a "test" post in to my blog here and see what it looked like. Well HELL, the "test" post looked totally normal!!! Nothing wrong.

I got to thinking that my very last post yesterday, I copied a portion of it off of Facebook and pasted here. Well, that post had some coding of it's own where the font and so forth was of course more for Facebook! Well, after all of the sheer terror of thinking I was going to have to redo something etc. , it dawned on me about that "code" in that copied and pasted post, overrode the regular code on my blog. Thus it was the ONLY ONE, that had that look! I had nothing wrong at all… NOW is  where I wonder if I should kick my on butt, or pat myself on the back, for a job well done!!! LOL!!!!

So, you can see where my entire Tuesday, from early morning until late night was a total BRAIN FOG!!! I seem to have more and more of these days… and it is frightening.. I can only hope keeping myself on the computer, writing, staying active as far as my brain and thought process, I will not watch that foggy stuff get worse. I never think it will get much better for several reasons, illness, age to name two. Stress, too much to do, not enough time to do it, we get hurried, thus our brains cannot keep up with all we are trying to process all at once….

So, HOPEFULLY the "fog" has lifted, and the actually very cloudy and rainy thunder storming day outside, will NOT bring the "clouds" to my brain for at least one day!!! HAHAHAHA!!!!

















Thursday, August 19, 2010

Incredible News about the Lupus Medication Benlysta! FDA makes priority review

Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has granted a priority review designation to BENLYSTA® (belimumab) as a potential treatment for systemic lupus erythematosus (SLE). A priority review designation is granted to drugs that, if approved, offer major advances in treatment or provide a treatment where no adequate therapy exists. The FDA has assigned belimumab a Prescription Drug User Fee Act (PDUFA) target date of December 9, 2010.


http://www.hgsi.com/latest/human-genome-sciences-and-glaxosmithkline-announce-fda-priority-review-designation-for-benlysta-belimumab-as-a-potential-treatment-for-systemic-lupus-erythema.html


I will be first in line as soon as the FDA gives the thumbs up! I have been awaiting this now for well over 2 years, watching all of the clinical trials, and the positive results. I am so elated.... Rhia

Thursday, June 17, 2010

Another Brand New Medication on the Horizon for Approval against Lupus

UCB and Immunomedics Inc. announced today that a new lupus drug candidate, epratuzumab, provided a significant reduction in disease activity in patients with moderate to severe active systemic lupus erythematosus (SLE).

See the URL:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3273&zoneid=99


This has been a wondrous week when it comes to living in the world of those with Lupus, and other autoimmune diseases. The many years of research has paid off, and now we have at least 3 innovative, one of their kinds new medication to take away many of the horrible symptoms of Lupus, along with possibly slowing down or stopping the damage to organs, such as kidneys, heart, liver and the brain. I am so incredibly psyched about the possibility of being "more well" and less worried about how much damage the Lupus is causing to my vital organs. I have already had more than my fair share of complications due to the Lupus, when it comes to other issues I have health wise. No matter how "not serious" or how serious other entities in your life as far as illness may be, Lupus can definitely reek havoc with your body, and cause even a minor health problem to turn into a major detrimental situation very quickly. Did I ever learn that just a couple of months ago when I thought I was having a severe gall bladder attack that was requiring laproscopic surgery to remove it. Little did I know the Lupus, along with a nick in my liver during the gall bladder removal would put me on a very thin line of almost losing my life to complications.


I pray that no one ever have to go through what not just myself, but my husband and family went through for 8 weeks plus. Even after I was "out of the woods" so to speak and at home, all of us were extremely concerned I could suffer harmful set backs that would send me back to the hospital at any time. I am still have pain issues in my right side, with tenderness, and symptoms that could be related to continued issues with my liver and pancreas. I certainly hope not, but we are keeping a close eye on any developing problems.


Please continue to follow the great news though about these new medications. I will continue to keep you posted on information I receive about the continued breaking good news..   Rhia

Wednesday, May 26, 2010

Thursday, January 14, 2010

10 Awesome Exciting Achievements in Lupus Research For Medications and More

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2847&zoneid=99

This is an exciting situation for those of us suffering from Lupus (SLE) and other autoimmune diseases. There are several medications that are on the brink of being possibly approved this year 2010 for combating the horrible symptoms, and the damage that Lupus does. Positive results for slowing down, shortening, and possibly halting flares have been shown in clinical trials, along with little or no serious side effects. Plus there has been much advancement in finding the bio-markers that could be partially or all the cause of those of us who come down with Lupus and/or other related autoimmune illnesses.

I am so thrilled and cannot wait until I can possibly try one of these medications.

I hope all of you who are Lupus patients, family, friends and caretakers are as excited as I am...

Rhia

Friday, August 21, 2009

A Quack Doctor, I still have no answers for my horrible health siutation

This is a letter I wrote to one of the places I am a member of in regards to health care reform. I have been so totally torn up about what happened to me this past Wednesday when I went to a referred Rheumatologist. Not only was I treated like crap, he basically told me I was either causing the horrible bruising (petechiea & purpura), or he insinuated Jim was causing it. Here is the letter and you will see why I am totally wiped, weary, and ready to just say to hell with it all!

The people of this nation have made it quiet clear, we speak as a majority to vote this health care reform bill into action. It is more than time that Congress puts the bipartisan back stabbing, acting like toddlers mess away, and get down to the brass tacks. Our present health care system is non-existent, old and antiquated, feeds on the insurance companies thriving, while the patients are being bled dry by the sky rocketing costs of medications, doctors visits, tests, and health insurance. NOW is the time for that to change! No MORE "pre-existing" bull, no more running not needed tests such as blood work, MRI's, CT's, and the entire gamut of what doctors do to get paid properly, as the insurance company slaughters the doctors by not paying what they truly owe them. I am totally shocked when I get one of my bills from a doctor. I am an established patient, not a new one, I see the doctor for a quick follow up, he is in there with me no longer than 3 to 5 minutes, yet the bill is over 250.00! And gosh knows from the nightmare of yesterday how much of a charge there will be by a total jerk of a physician I went to. I go to a new rheumatologist, he "blew off" the very reason I went to see him for. After I have had an entire battery of every blood test in the world by my hematologist in the last 3 weeks, this so called want to be a doctor, rheumatologist wanted to RUN THOSE TESTS AGAIN!! Why??? Well for one thing, the lab was OWNED BY THE RHEUMATOLOGISTS! Makes send huh... they also get the lab payments... so they can run up thousands of dollars worth of blood work that patients have already had done, so they can collect MORE MONEY from the consumers and our insurance companies. I would bet when I "see" the bill, he charges 500.00 plus in his fee, when HE NEVER ONCE TOUCHED ME, OR EXAMINED ME IN ANY FORM OR FASHION!! He has his "assistant" briefly ask a few questions, half way look at me, and I had provided A LARGE AMOUNT of brand new blood test results that I gave her... along with the reasons I was there. She left, was gone about 5 minutes, brought the doctor in, he said basically my other doctors were "idiots", that nothing was wrong EVEN THOUGH I AM COVERED HEAD TO TOE WITH EXTREMELY SEVERE BRUISING. I am constantly bleeding under my skin, and it has been going on now for almost a year!!! Yet this idiot said "he was NOT concerned about the bruising" and insinuated there was NOTHING to worry over, they are just “garden variety” bruises is what he told me...This is after 4 other doctors, along with lab technicians, and nurses, that this type of petechiae and purpura was NOT regular bruising. The other physicians seem to think it could be a type of vasculitis, due to the autoimmune illnesses that I have, which as Lupus, Sjogren’s and Raynaud’s. Everyone that knows me and sees me including my doctors are EXTREMELY CONCERNED about my health situation, and honestly every one including the nurses, lab technicians, and my doctors told me they are praying for me. That tells you this what ever it is that I am totally covered with is something potentially extremely serious. Now I am left at a cross roads once again, not even knowing where to turn, especially since my PCP and the hematologist told me, if I were to fall, or be in an accident, I could bleed to death internally!!! That if I fall, I go straight to the ER, or if I have any symptoms of internal bleeding. My story is a nightmare, just like so many. The doctors, insurance companies, and medical personnel care about MONEY! Not all of them, but many of us encounter this type of greed, not caring, non sympathetic physician, that wants to rerun tests, run up our bills, and make a fortune while like myself, I may NOT live if I don't find out what is causing this horrendous petechiae and purpura (special bruising other than a normal bruising caused by an autoimmune disorder. My own body and antibodies are attacking my blood veins, arteries and capillaries and basically destroying them)...

I am depressed, mad, hurt, shocked and most of all myself and my family and spouse are terrified I could bleed to death.


So something needs to be done... AND DONE NOW TO FIX THIS MESS we call Health care!



Friday, April 10, 2009

Stem Cell Research - Possible breakthrough in treating MS

http://www.nlm.nih.gov/medlineplus/news/fullstory_82747.html
Thursday, April 9, 2009

THURSDAY, April 9 (HealthDay News) -- U.S. scientists say they've coaxed human embryonic stem cells into generating cells that might someday be used to repair nerves damaged by multiple sclerosis.

The researchers pushed the stem cells to grow into critical nervous system support cells called oligodendrocytes, according to a report released Thursday.

Oligodendrocytes produce the myelin sheath that surrounds nerve fibers like wire insulation. The findings represent an important step toward embryonic stem cell-based therapies in general, experts say, and also for cell-based therapies for myelination disorders such as MS in particular. At the very least, the findings should lead to a laboratory model of the illness' pathology.

"They are definitely laying the groundwork for being able to apply these cells in terms of a therapeutic application," said Timothy Coetzee, executive director of Fast Forward, a wholly-owned subsidiary of the National Multiple Sclerosis Society, which partially funded the study.

Yet at the same time, he added, "It illustrated for me the critical importance of not assuming that because you can do something with a mouse cell, that a human cell is going to behave in the same manner."

The research was published in the May issue of the journal Development.

At the heart of this study is a fundamental question: What's the difference between mouse and man?

It's not as silly as it sounds. Human experimentation being both morally and legally forbidden, researchers often use model organisms such as mice as proxies for human development. The underlying assumption, of course, is that these organisms have fundamentally the same biology as we do. Sometimes, though, that assumption turns out to be wrong.

For years, researchers using mouse embryonic stem cells (ESCs) knew that if they added one of two proteins, FGF2 or SHH, to the cells' growth media, they could reliably induce those cells to become oligodendrocytes. The human application was obvious: ESC-derived oligodendrocytes could either be used directly as a cell therapy for MS and related diseases, or serve as research tools to study them.

But, when Dr. Su-Chun Zhang of the University of Wisconsin, Madison, who has been studying oligodendrocytes and myelination for nearly a quarter-century, tried to apply the culture conditions painstakingly worked out in rodents to human cells, oligodendrocytes failed to emerge.

"When we expand these [rodent] progenitor cells with FGF2 (and another factor called PDGF), these progenitor cells will become oligodendrocytes," Zhang said. But, "What we discovered was that when we did [the experiment] in the same way with human progenitor cells, they were blocked in this process."

By carefully dissecting the molecular events that occur as human ESCs differentiate first into neural stem cells, then neural progenitor cells, then pre-oligodendrocytes, and finally mature oligodendrocytes, Zhang and his team identified the source of the difference: While both rodents and humans control the process with the same regulatory circuitry and use the same molecules (including both FGF2 and SHH), FGF2 behaves differently in each species.

In mice, FGF2 promotes oligodendrocyte maturation; in humans, it inhibits the process.

"This finding is actually quite significant scientifically," said Zhang, "because even [though] the transcriptional network is more or less the same, yet they respond to the same factor in an opposite way. To me, that's quite extraordinary."

Once that simple fact was understood, the experiment could be tweaked so that human embryonic stem cells could, in fact, generate oligodendrocytes.

The study, said Coetzee, "just reinforces the absolute importance of being able to do some of this very fundamental biology and fundamental understanding of what human cells do, before you start experimenting with them to put them into people."

Dr. William Sheremata is professor of neurology at the University of Miami Miller School of Medicine. He sees many MS patients in his practice and called the study "an excellent example of work that is very carefully done by an expert group of people who really know what they are doing. So I think that the conclusion that FGF2 does not work to facilitate maturation of pre-oligodendrocytes is acceptable at face value. It is the first paper that has stated just that."

Sheremata questioned the therapeutic implications of the report, however, suggesting that therapies based on "autologous stem cells" (adult stem cells) were more likely to bear fruit.

Coetzee, though, called the findings "absolutely critical" to moving toward clinical applications for MS, whether directly by injection of mature oligodendrocytes or more primitive precursor cells, because it both enables researchers to grow large quantities of these cells and to molecularly define the process by which that happens.

"This actually begins to lay the foundation for envisioning having the ability to create the mass quantities of stem cells that you'd need in order to have a therapeutic application in MS," he said.

(courtesy of Medline Plus)