Wednesday, November 10, 2010
Well, we went to the market, got home and was putting up groceries, and I got a call from my pain doctors nurse. They got everything approved and set, and now TOMORROW is the day for the pump "trial". I had been hoping they would get it done earlier than next week, because I did not want to be in the hospital or just getting out on Thanksgiving. Thus that probably means if the pain pump is already coming to the hospital the doctor will probably have me come back in early next week (I know Tuesdays are a day he does procedures) and I will actually have the surgery next week. I am not positive, but he did tell me he does not wait long, that if the trial goes well, he sends me home, only to turn around and come back very soon. Plus it appears he will be right, and I will be through before Thanksgiving. I will still very much be getting over surgery, and not able to do much of anything.
I have to encourage myself about the issues of NOT OVERDOING when I come home. I have a friend on Face Book that had a pump put in about 5 weeks ago or so. She was doing fine, but she must have overdone too quickly. She began having swelling about 10 to 15 days after the surgery around the pump itself. When she went back in for her recheck the catheter they felt was leaking, thus it meant going back in to fix it. Sure enough, when they redone surgery, it had been pulled loose. Thus more than likely she pushed, strained, pulled, or overdone too quickly, before the catheter had time to really anchor in where it is stitched etc. and it was pulled loose. She has already had the corrective surgery, and is back home recuperating once again. But, it is a good reminder for me, NOT to do what I should NOT when I get home. I have a tendency to get restless, and want to get up and do something. But, I have already pledged to myself and my husband I would NOT go there. Amy, my friend on FB, is a good reminder of what could happen if I don't do exactly as I am supposed to.
I have already gotten my crotchet stuff out and have thread enough to begin a new afghan. I also found some brand new color books and colors I had bought a couple of years ago for my grand kids for one Christmas when we thought they would be here on Xmas day. LOL, I thought I might color. Plus I have my IPad, of which is going with me to the hospital Jim has already set it up where I can connect to my computer here at home, and do my email etc. I am not sure if the hospital has wireless for their patients, but we are going to get a months' service through AT & T if not, so I can connect to the internet.
I am honestly extremely nervous!! I know I have had more than time to think this over, have had all of my doctors tell me this is a great thing and so forth, but of course, even with all of that, I realize this is another surgery, and I will now have another "foreign device" in my body. I already have both knees that are titanium, screws in my left elbow, clips in my right shoulder, and will eventually have titanium in that shoulder also. Thus here is another piece of metal that will be inside of me. That is not such a huge thing, but just the thought of it, is kind of weird feeling.
Everything I have read, everyone I have talked to, etc. all is positive for the most part. They say my pain will diminish a great deal more, with lots less medication! Plus I won't suffer the side effects of taking the medications orally, like stomach upset, constipation, and so forth. Of course as with any kind of procedure, there are things for instance, such as Amy's catheter pulling out of place that can happen. But all in all, everything shows a great success on these new pumps. We shall see. I have waited a very long time to get as much control as possible over the pain, without being knocked out, thus this is the ultimate way to get it. Also, I have to remind myself, if for any reason, it needs to be taken out, it can fully be removed with no problems. So, I have to remember as "permanent" as it seems, it can always be removed.
Lots floating through my head this morning... please keep me in your thoughts and prayers, also Jim and my Mom and kids. We have not told Mom. Amanda or Jason yet that it has been moved up until tomorrow. I decided to wait until later today to let them know. They worry enough as it is.
Hugs to all... more later, Rhia
Sunday, November 7, 2010
The headline reads "
Saturday, October 30, 2010
Of course, yesterdays events unfolded and all of us knew it was not some elaborate hoax, but was a very real situation. One that now has left us with many unanswered questions. Some we may never know answers to. Others due to the extreme nature of needing to be top secret, the government I am sure is not disclosing, just due to not wanting information to get into the wrong hands.
We are asking things such as why these particular packages were headed from Yemen to the US? Where they actually "explosives" completely set up and designed to be detonated? Were they "pieces" of an explosive device or devices, that were to go into the hands of someone who were put them together and later use them as a bomb plot against us? Is there a further "agenda" by those terrorists involved to watch how we handle the situation, and they are readying themselves for another attack? Is it a test of our Homeland Security, a test of our nations airports, a test of just how capable we are to handle another massive attack? Where they truly meant to explode at a specific location, at a specific time? Or was this just a decoy while they decide their next terrorist move against our country and many other of our allies. We already know these people despise our nation and our people. We already know that many are willing and ready to sacrifice their own lives in the name of religious beliefs, and die for that cause.
Did our "intelligence" work? Did our tactics put in place since 9/11 take care of such a horrendous situation such as 9/11? Are we as individuals and as a whole nation on alert enough, do we have security in the proper places enough, are we watching closely enough to be fully prepared for another night mare such as that fateful September day? My thoughts are that out of the millions of bits of information that are gathered on any given day right here in our nation, along with many other nations, that we have to be doing an incredible job of thwarting these plots. Of course as individuals not in the government agencies, we do not know just how many potential bits of information lead to nothing, or lead to a plausible situation in which we do act upon to stop such a horrific event from taking place again on our own soil. Yet, it is mind boggling between what takes place on the internet daily, the millions of emails, posts, websites, blogs, and such alone that you have to wonder how we could catch such things as the possibility of attacks again. Then you have all types of other ways to communicate, to be mobile, to be around the world in a matter of hours now. We are such a mobile community, with cell phones, computers, fast traveling air planes, the railroad, cars, the wireless internet where you have "hot spots" all over this country and the world now for that matter, than can be used to send information immediately, without any lapse time. Even you just consider UPS, FEDEX, and all of the other ways packages can travel from one continent to the other in a matter of even a day, and that does not include by ships, 18 wheelers, the postal service, etc. that at any one time something can be shipped from somewhere in the middle of nowhere, and be sitting in our of our nations huge city's in a matter of hours. Needless to say when you really sit down and think about the reality of how our Homeland Security Dept. as well as our law enforcement, our several other intelligence agencies, and even us as watchful citizens can be able to intercept such items well before they reach where they are meant to do nothing but harm us, maim us, scare us... all in the name of their own teroristic nature.
It also brings to mind the whole bullying thing that has been in the spot light now for weeks. It just blows my mind to think we are raising young kids that are already developing a hateful nature when it comes to their peers. We know that "teasing" has gone on forever in schools, and anywhere children are in groups. From the time we were all in school, we usually had one or two kids who were trouble makers, and deemed as "bullies" in our schools. Yet, then a "bully" certainly was not the connotation of what we mean as bullies these days. I cannot fathom young kids making such a mockery of their own peers that it causes such a horrific problem for the tortured child, that they even remotely think about wanting to kill themselves. I recall being "teased" and it was not funny at all. I was a bit overweight during my teen years, and I endured some name calling, etc. due to my weight. Until this day some of that does haunt me. Even though I took the weight off just after graduating high school, until this day when I look in the mirror, I see that chubby high school student, and it puts a damper on how I feel, and my self esteem. Some of it caused my own issues with how I feel about my body, how I feel about even gaining a pound, and how I present myself in public... all of it at times stems from those days of being called names in school.
Yet, now, it is far from being the typical name calling about being overweight. These kids are being fully attacked about all aspects of their lies. The hateful and bitterness witnessed today among our youth, is not just a tease but full blown hate crimes in many ways. When you are verbally, mentally, emotionally, and physically attacked by those that should be your allies, those that are supposed to be your peers, it hurts more than just a name calling event.
My question is why this is happening? Where are these kids learning to be so incredibly hateful, mean, and showing no compassion, no decency, no manners, no feelings for those around them. Is this something they see all too often or even taught at home? Is this stemming from lack of parental control, lack of family life being what it used to be, from what they see on video games, hear in music, read in books, see on television, and witness by others where youth are. We definitely as a nation, as schools, as youth events, as parents, teachers and the like need to get a grip on these events. There needs to be punishment, education, and ways that these kinds of happenings are put to bed for good. These kinds of actions can only lead to adults that are going to be more hateful and more apt to hate crimes, if something is not done to stop these kids.
It is an ongoing battle that certainly needs to have attention and prevention done. The answers are probably not all black and white, but shades of gray as to how to handle these events, how to give our kids more self esteem, more empathy, more respect, and more morality. That has to come from home first, then from teachers, pastors, and all adults that are around our nations kids. Respect is something that seems to have been thrown out of teaching. Respect is something that needs to be definitely brought back, for both children and also for many adults.
Wednesday, October 27, 2010
Funding is provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, which has previously provided BRI funding for other projects, including HIV research, lupus research and developing a flu vaccine.
Investigators will analyze samples from well-characterized groups, such as children, the elderly, and people with autoimmune diseases - for example, lupus. These groups represent diverse populations with respect to age, genetics, gender and ethnicity. The research teams will examine immune system elements of these populations before and after exposure to naturally acquired infections or vaccines or vaccine components. The profile that will emerge of the body's response will be based on the most sophisticated and comprehensive tests available.
"Being able to track activity in the immune system and note the differences in the immune system's response before, during and after exposure to infection or vaccination will help us develop safer and more effective therapeutics and vaccines," says Michael Ramsay, M.D., president, Baylor Research Institute. "Our research also will add to the body of knowledge on the immune system, and that could lead to other exciting discoveries."
The researchers' studies will focus on immune responses to vaccines against specific viruses and bacteria such as influenza, neumococcus and West Nile virus. They will take advantage of technological developments and advances in creating databases to establish mathematical models to identify and analyze complex changes in immune profiles.
BRI's efforts, along with the other research centers, will help establish a centralized infrastructure to collect, characterize and store human samples and analyze the large data sets that will be generated. Eventually, the centers will gather the information from this effort into a centralized Web-based database they will make available to the scientific community to promote and support human immunology research.
"Because of this research, we will no longer only have to rely on animal models to define the principles of human immune regulation, which is not always effective," says Dr. Ramsay. "The knowledge gained also will improve our understanding of the range of vaccine responses in particular subpopulations, including newborns, young children, the elderly, patients taking immunosuppressive medications and those with underlying diseases of the immune system, such as allergies and autoimmune diseases."
Besides BRI, other research centers participating in the program include: Dana-Farber Cancer Institute in Boston, Emory University in Atlanta, Mayo Clinic in Rochester, Minn., Stanford University and Yale University.
Monday, October 18, 2010
Here is the article:
Here is a portion of the newsletter I get from Lupus.org. It has the email address of one of the women at the FDA who will have something to do
with Benlysta, the brand new Lupus medication, first ever of its kind,
FDA approved by Dec 9th 2010!! Please send her a brief email of your
hopes and feelings about getting this approved. :)
On November 16, 2010, the Food and Drug Administration (FDA) will hold a hearing to discuss the application to approve BENLYSTA® (belimumab) as a
treatment to reduce disease activity ...in adults with active, autoantibody-positive lupus.
If approved, BENLYSTA® will be the first drug to be specifically developed
for lupus and the first new treatment for lupus in more than 50 years.
While BENLYSTA® may not be appropriate for all people with lupus, having a
new approved treatment for lupus would be a significant step forward and
would provide a pathway for future approval of the arsenal of therapies
required to manage a disease as diverse and complex as lupus.
Make your voice heard! It is important for the FDA Committee to have a clear
understanding of the diversity of the disease and how it impacts people
with lupus and their families. You can help by sharing your story about
why new treatments are needed and the hope for new treatments in the
Email your short statement to Yvette Waples at the FDA, Yvette.firstname.lastname@example.org by November 1, 2010.
Saturday, October 16, 2010
If I told the entire story of how many phone calls I made this week to the insurance company, to doctors offices, and the pharmacy, you would probably not believe me.
I think the one thing I got out of all of it, is that I spent MY TIME doing THEIR JOBS! That is what I just don’t get. All of us spend our hard earned money to pay for services, yet why is it we have to stay on top of people to make sure things get done correctly. If I had caused some of the issues I had this week when I was working, I would have lost my job for sure. I was flat LIED TO by one doctors office in Dallas. They claimed to have spoken to my insurance company, and that my insurance told them they would NOT pay for a very expensive evaluation that the INSURANCE COMPANY requires before I can have the pain pump surgery. I guess they thought they would collect almost 300.00 from ME, and I would not check up on them. I made a call that afternoon to my insurance company who first of all said they NEVER TALKED to anyone from that doctors office, and secondly, that visit WAS COVERED! Sure enough (as they HOLD MY FUNDS UNTIL INSURANCE PAYS), that visit will be paid for by the ins. company, all but my small co-pay! I have to wonder if they do that knowing the insurance does not pay all that well, so they tell certain patients that collecting cash from the patients knowing they must have that test first, before the can proceed.
That was just one instance, not including the other several things like another doctors office not faxing what the insurance needed about a new medication that I needed approval on... that the pharmacy first messed up by not sending the form to the doctor. Then the doctors office in spite of several phone calls from myself and my insurance did not fax over what the insurance company needed in order to approve the medication. And I have been waiting now for almost 4 weeks and it still is NOT approved.
Then another physician has a new nurse, that has been at the office long enough to know 3 of my medications come from a specialist pharmacy in Dallas. The doctor has to approve the medications, the pharmacy has to pick those up, then process them, and then MAIL them to me here in Ennis. Yet, the past two months I have had to make 2 follow up calls to remind the nurse that I am in Ennis, and she needs to do her part a couple of days earlier than some, because of them having to mail them. She messed up last month and we had to make a rush trip to North Dallas to pick my medications up because I would be out before they could get them to me. I have been seeing this doctor now for 4 years, and I have been getting my medications the same way all that time. Yet, I still have to make follow up calls in order to get my meds on time.
Then Thursday we both had visits in Dallas. Jim’s was first and we were told it might take over an hour to do all of the paperwork. So, we scheduled my MRI/arthrogram, which was in East Dallas, and his appointment was in West Dallas, several hours later, so we would not conflict with mine. Well, his paperwork only took about 30 minutes, and we had 3 hours or more to spend, waiting on mine. Well, we went ahead thinking maybe they might get me in early, and they could on the arthrogram, but not the MRI, which had to be done within about 30 minutes or so from the contrast being put in my shoulder. Thus luckily it was a beautiful day, so we spent a couple of hours just sitting in the sun, reading and resting in the parking lot of the hospital. The MRI actually ran late due to the patient in front of me, so it was at least 2:30 before they got me in (I had been told it would be at 1:30)... but we managed to get out of Dallas just before rush hour got really bad. We were totally exhausted by that time, but got home safe. Our car overheated on Jim Wednesday afternoon. We thought it was a broken radiator hose or the thermostat stuck wide open. But, hopefully it was just because of it being such a small radiator, it was a little bit low of water and antifreeze, so it just needed more of those. So far around town it did not overheat on us, but would did not want to chance it in traffic in Dallas, so we took my Mom’s car instead. Jim’s not sure about his new doctor. I went with him and can relate. The doctor changed his medication, to something Jim had never had, but did NOT explain anything to him, like it would take 3 to 5 days before it built up enough to work. He also did not tell him some of the bad and adverse side effects. Things that any physician, especially a new one, giving out a new medication that has some potentially adverse side effects, should tell every patient. So, as far as a doctor, he seems to be good, but he has no communication skills with patients.
The good thing is that I am a step closer to finding out whether I do have another tear or more tears in the rotator cuff in my shoulder, plus arthritis bad enough that I need a shoulder replacement (I know that does not sound good really, but I want to know for sure what the problem is), plus I am now going to be where I can have the “trial” for the pain pump. Once I have that trial time, and it works, then I can have the surgery, which from everything I have heard from all of my physicians, along with all I have heard from patients, and online, I will be much more less in pain, with much less medication with the pain pump. So, even though it entails a major surgery, the end result is a very positive thing for me. The issue for me is that my chronic pain is from Lupus, degenerative joint disease, degenerative disc disease, & other issues, such as probably Rheumatoid Arthritis. Thus, even replacing the shoulder, and all of the surgeries I have already had does not stop the pain. There is nothing they can actually “fix” that can stop all of it. They can stop the shoulder pain by a replacement, but my body will still hurt, first due to the Lupus. My other joints like toes, feet, ankles, wrists, fingers, hands, etc. still will give me fits. So will my neck, etc.... thus a pain pump for me is the answer. Hard to accept for sure, but I totally understand why.
In between all of the above, I also spent several hours online researching a new health insurance policy to begin on January 1. The issue with that is I have to try and make sure all of my doctors take it, and all of my medications are covered. Not an easy task, but it seems I may have found one. I need to verify for sure my doctors are going to take it, along with also making sure they are going to cover my medications, but the indication online initially makes me think this one make work out. ☺ A very good thing, since I have several specialists, and quite a few medications.
I could moan, groan and fuss. Believe me I was not a very happy camper at times due to those that are supposed to do their jobs, seemingly not doing them. Yet, it seems that I am definitely not the only one. There are many, many people out there going through the very same as myself, and some much worse.
Yes, the pain is bad. Yes, fighting with insurance, pharmacies and doctors offices is frustrating. Yes, having to go to Dallas more than once a week here lately is an exhausting situation.
But, I have to accept that is a part of my life. Even though I don’t know why I am dealing with the physical realms of these chronic illnesses... only to think it opens doors for me to tell others my story. It opens doors to new places and people online. So, there is a reason for it all.
When we are in a rough patch, it seems it is never ending. Yet, the good times in life always prevail. Once the rough patch is over, what comes next is life at its finest. ☺
Again, I will make two trips to Dallas next week. I soon face that trial couple of days for the pain pump. Then I will spend time again in surgery and recovering, but in the hopes that the results will be very good.
I take one step at a time, one or two feet up that mountain, never looking down, always looking up at where the peak it, and the light shines above....
Thursday, October 7, 2010
This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)
Saturday, October 2, 2010
On her book tour, she was asked by a head person at CBS to do a video spot about her book and the tour. There had already been another video done by a guy and the title of the video is "15 Crazy Things About Sperm" Here is the URL: http://www.cbsnews.com/2300-204_162-10004933.html.
It seems it is perfectly okay to use the term "sperm", or other related words, such as "Penis", "erectile dysfunction" which we see and hear all the time on commercials, but the word "Vagina" was said by another CBS person to be too "racy" for them to put up Lissa's video on their website which is: "15 Curious Things You May Not Know About the Vagina". Now tell me, why is it perfectly fine to use the term sperm, and not Vagina, when it is not slang, it is a medical term, and she in fact is an OB/GYN??!! It is pure sexist as far as I am concerned and women should be outraged everywhere. In fact men should be outraged. It is purely stupid. They can show bloody, horrible violence all over the internet and on TV. It is fine to show half naked women in movies for TV, and advertise medications for Erectile Dyfunction, even as far as saying "Be ready at any time", plus Jimmy Johnson advertising pills and there is even a RACE CAR for "Extendize", but the word Vagina is taboo? This is NOT the stone ages. This is NOT some slang term, and besides it is a video on CBS news on line not in some prime time slot on TV, which should not make a difference at all. Here is a post from Lissa Rankin, where you can read the entire story, and decide for yourself. But this is plain sexist, and I hope all of you stand up and be counted for. After all, all women have them, and there is NO good reason not to use this term.
Thursday, September 30, 2010
Then we come to a place that we start to feel "burned out", "spent" and used up. At that time is when we grow into a place of darkness, and we begin to try and find out why we feel so completely useless, when it seems all we do, is be "useful" for all that are around us.
As women, sometimes we just do not "see" our own needs. We tend to think that the more we do for others, the better we will feel about ourselves. Yet, without tending to our own bodies, minds, souls, and spirits, we are spiraling downward, using up all of our energy on others, and giving to ourselves nothing. Sooner or later we often find ourselves fighting illnesses, depression, & anxiety.
We must learn to follow our own dreams, give ourselves a break, let ourselves off the hook, and allow our own lives to blossom. When we feel whole as a person and woman, then we can do more for others. But, if we allow ourselves to put our needs at the very bottom of that long list, we often are resentful of the very people we love most. Love yourself enough to take care of you, then you will have enough time and love for those around you.
We also have a tough time saying "No!" No matter how full and busy our lives are, many times women just continue to say "Yes, I can" to all requests put on us by jobs, family, spouses, children, and the world. Why shouldn't we be able to do it all??? We are "wonder women" aren't we? Yes, many of us are truly "Wonder Women"! We say yes to everything. Then we wonder why we are exhausted, sick, or in pain. We try and figure out why we are angry or upset, and just can't fathom why, when everyone around us is have their needs met, we are not happy.
Take a very good look in your mirror. Ask yourself when the last time was that you said "no", I can't go to the soccer game tonight, I need to stay at home because I have lots to do, or I am just too tired this one time. Or I need to take a rain check on the Tupper Ware party, or let's postpone the yard sale for two weeks, or let's go out tonight and eat, I don't feel up to cooking. When was the last time you did something totally "selfish" just for you? Had a manicure, had your hair cut, permed or colored (not by yourself, but at the beauty salon), bought yourself a new dress or shoes, took lunch hour for LUNCH, NOT errands, asked the kids to put away their own clothes, asked your spouse for a dinner date, sat down all alone and read a book, or watched your favorite show, did your nails in a new color, or any number of things we should do just for us???
"Owning Pink" and the ladies there, is and are about taking care of you and your needs. Everyone there has been through tough times and wonderful times. The women there understand one another, they listen to one another, and they even meet physically in some places, like for instance, there is a "group" right here in my own county and home town that have meetings on occasion.
I will end for now with a couple of links to go to. Lissa has a FaceBook page, plus she has her "Owning Pink" website, and her new book just went on sale, and is at Amazon also.
Please take a moment to think of something nice that you can do just for you today... even if it is just a 5 minute breather, totally without any noise or interruption to tell yourself, you are truly "worth it".
How stupid is this??? They find a medication that can take the pain of osteoarthritis away so well, people get their lives back, but the FDA feels it is working "too well", thus they have halted the clinical trials until they can deliberate over it. Why not put a strong warning on the medication, that if you have advanced degenerative joint disease, where the joints are almost worn out enough to require replacements, that you need to not go back to joint intensive type activities, such as jogging, running stairs, running, playing tennis, or any kind of physical activity that puts lots of added stress onto the joints??? Sure we are going to do more once we are out of chronic pain somewhat, but to take it completely out of clinical trials because it works so well seems absolutely stupid to me. One story about it is above... and here is another link...
Friday, September 24, 2010
Once again the American Pain Foundation has come through with great information for all of us suffering from chronic pain. This series of videos goes through how medications effect our lives, the positive aspects of controlling pain, from medications to the use of implantable pain devices, all of these are full of informative and good information for pain patients, spouses, caretakers, family and friends. I urge you to take a look and listen to a few of them. I have already listened to numbers 5 and 6, about the implantable devices, since I am facing having a pain pump put in very soon.
I already learned a great deal more, than I already knew from my own research. :) Rhia
Yes, another article negatively impacting prescription pain killers from a prominent paper, the New York Times. What I just don't understand is why they are NOT telling the other side of the story, which is how so many people are given their quality of life back, due to these types of medications. Here we are in the middle of National Pain Awareness Month, when positive things should be discussed and told, yet just about every media type, every news station, many newspapers, & other media have chosen to skip over the good news, and put the bad and ugly in words and reports. This is truly infruiating for those like myself, who are true chronic illness and pain patients, we have NO issues with abusing, addiction, stealing, lying, or being one of the "bad" guys, yet this type of representation reeks havoc for our future quality of life. Please join me in making sure we continue to get the GOOD news out about our medications and all the positive ways they affect us.
Thanks so much, Rhia
Monday, September 13, 2010
With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”
Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.
Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible
Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.
Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.
Wednesday, September 8, 2010
So, I am making myself a promise starting today. I am going to begin writing everything down in my journal that I post daily. I will try and go back and copy some of the things I have already written, and be sure I put them in the place I am writing for my book. I now realize that taking my posts and doing that would put me in the realms of having my book. I thought about calling it something like - The Dichotomy of Chronic Pain and Illness - Pieces of Me. Which would fit right in, through the daily chronicle of my living and learning about pain and chronic illness. For I am the bits and pieces of my own psyche, my own suffering, my own learning, posting, blogging. It is a daily look at what it is like to go through living with Lupus, RA, degenerative joint disease, the medications, the ups and downs, the flares, and how being online can makes a world of difference, where you can find support through groups, lots of others that become a part of your extended online family, where you find love and caring through others, where you learn more about your diseases, conditions and illnesses, where you find doctors, research, clinical trials, and those passionate about making life better. Without my own line friendships, there are days I would totally give up and give in to be content to sit on my butt, and say to hell with the world of pain. That would be the easiest thing to do. This month is Pain Awareness Month, it is also Invisible Illness Month, that goes right along with many of these illnesses. Those of us that fight these syndromes, illnesses, diseases, and the pain and suffrage that go along with them, can tell you we get to the point daily, we would like to "throw in the towel", but faith, hope, and the love of others keep us coming back to our computers to find people that keep us going, even in the darkest of times. When we can't sleep from pain, when we have endured yet another surgery, or a failed treatment, we come online and there they are, those that want to lift us up, give us hope that we have to smile to ourselves.
It gets me to thinking about all I write daily on these blogs, and groups. I learn so much from so many, I get lifted up when I am at the bottom of the barrel of despair. These people deserve a huge round of applause. They work daily to make life more bearable, even in their own illness and pain, they come to Face Book, to pain blogs, to Lupus blogs, to so many wonderful places online to support those who hurt also. I feel these wondrous people, are just like myself. They are Moms. Dads, patients, caretakers, professionals, novices, writers, poets, every day people, just trying to make a difference. We all want our own pain and suffering to go away. We all want to wake up one morning to read headlines that discoveries have been made for all of these nightmare illnesses and see that the puzzle, the mystery has been finally solved. We want to read some grand medication or therapy will just blow into our lives, and we will be cured for good. We don't want to give up or give into what hurts, but there are days, weeks, months, and even years, that feeling well is just not in our cards. So, we blather on, online about the great days, and the days that suck. We find hope in one post, or online through a news article. We score over the websites that tell us that a cure is near. Just like Benlysta. I have followed that one medication now for a couple of years. It has given me hope, that it will be the miracle of all medications, that it will be my cure all, for the Lupus Flares. Each day I mark off that approval from the FDA is just one more day closer. Yet, will it really be the end all to Lupus flares? The results of clinical trials are saying it is definitely worth trying. But, until it is out on the market, and every day Lupus patients begin to use it, we can only go by what the pharmaceutical companies, and their clinical trials gibberish tell us. Like myself, it is difficult to put your trust in what these companies tell us. After all, they are the ones that prosper if millions take the medication. They are the ones to get rich and benefit the most from us as patients. If the doctors press us, in desperation we are just about willing to try anything if it means we might not have flares, we may see pain relief. We will go to the ends of the galaxy, fly through the black holes of where ever we need to if we remotely feel we might find the final frontier of relief, through the many pills, injections, infusions, patches, and creams. We spend our time awaiting that clinical trial to say, this is the Holy Grail of making us well.
Sunday, September 5, 2010
Thursday, September 2, 2010
Please join me in lending your voice for the September Pain Awareness Month, and the virtual march. The URL above gives you all of the information you need. I thank you in advance for all of your support.
Wednesday, September 1, 2010
I was in Care 2 this morning and found this site. The gentleman is doing something out of the kindness of his heart for the good. I joined the site and thought you may like to also. The link is below:
The good things start with us. Once voice, one good deed, and it can snow ball quickly into something terrific.
I was happy when I saw the site, and rather than posting about something lousy again, I decided to share something spectacular!
Monday, August 30, 2010
If you are a pain patient, a caretaker, friend, neighbor, family member, or someone who just wants to help joint the fight against chronic pain, and be a positive voice please visit the American Pain Foundations Website. I have enclosed their URL.
Chronic Pain is a life altering illness that effect millions of us every year, and that rate continues to grow. There is still so much that is a mystery when it comes to many chronic illnesses and chronic pain. We lose many hours from work, we suffer horribly, we sometimes lose our jobs, families suffer, spouses suffer, and life itself has many limitation due to chronic pain. I hope you will join me in advocacy, awareness, and doing what you can to help solve the mystery of chronic pain.
Thursday, August 26, 2010
This is just an incredible idea! Being a chronic Illness and pain patient, I know how difficult it is when someone that just does not under says things like "but you don't look sick". The majority of us suffering from things like Chronic Pain, Migraines, Chronic Fatigue Syndrome, and so many others may not "appear" to look ill all of the time, not like we do when we have a bad cold, the flu, pneumonia, or other acute types of illness, but that surely does not mean we don't feel it. People with chronic Illnesses learn coping methods, so we may have our hair looking good, nails painted, makeup on, and be dressed when we go to the market, or shopping, but that does not mean we are not in pain, or that we feel great. We just get tired of looking sick and tired, plus for some, getting dressed, doing your pain, putting on makeup, getting your nails done, and so forth makes us feel a little better. I realize that people from afar, strangers, may not get it. And for me, it got to the place, that sometimes I go out, looking like heck, because I don't want to deal with the comments, that I look fine. Thus, you don't put makeup on, etc. Those days are usually when I am feeling like death warmed over, thus I probably look it.
I found out we will have this National Awareness week about Invisible Illnesses. What a wonderful idea, and one we can share with others so they may understand better, what being chronically ill or in pain means for us. It can happen to anyone, anytime. You may have not had a headache, body ache, joint issue, all your life, and one day you wake up to horrible pain, severe fatigue, bad headaches, and many other symptoms. No one is immune from chronic Illness and/or chronic pain. I would not wish Lupus, and my other health issues on anyone. But, I would like to help educate others about just how life altering Chronic Invisible Illness and Pain is to all of the people it encompasses... from those who have it, to family, friends, spouses, and caretakers....
Thursday, August 19, 2010
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
Friday, August 13, 2010
Reviewed by QualityHealth's Medical Advisory Board
There are many different types of headaches and treatment sometimes depends on knowing what's causing them. Frequently however, the exact cause is unknown. Common culprits are fatigue, hunger, dehydration and stress. So, rather than treating just the symptoms, why not treat the root causes naturally?
Great article, and very helpful
NIH launches effort to define markers of human immune responses
Recovery Act enables research that could help improve vaccines and therapeuticsA new nationwide research initiative has been launched to define changes in the human immune system, using human and not animal studies, in response to infection or to vaccination. Six U. S.-based Human Immune Phenotyping Centers will receive a total of $100 million over five years to conduct this research.
Funding for the centers is provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Support for the first year of this initiative will come from the American Recovery and Reinvestment Act.
"Recognizing the differences in immune system activity before, during and after exposure to an infectious agent or vaccine will help in the development of safer, more effective therapeutics and vaccines," says NIAID Director Anthony S. Fauci, M.D. "This research effort also will contribute to the ongoing evolution in our ability to study the immune system."
Investigators will analyze samples from well-characterized groups, including children, the elderly and people with autoimmune diseases such as lupus. These groups represent diverse populations with respect to age, genetics, gender and ethnicity. The research teams will examine immune system elements of these populations before and after exposure to naturally acquired infections or to vaccines or vaccine components. The profile that will emerge of the body's response to vaccination will be based on the most sophisticated and comprehensive assays currently available. This will enable new approaches to examining vaccine safety, not just of individual vaccines but of the processes of immunization in general.
Their studies will focus on immune responses to vaccines against specific viruses and bacteria, such as influenza and pneumococcus, as well as to infection with West Nile virus. The investigators will take advantage of technological developments and advances in creating databases and developing mathematical models to identify and analyze the complex changes in immune profiles.
Each awardee will contribute to the establishment of a centralized infrastructure to collect, characterize and store human samples and analyze the large data sets that will be generated. Eventually, the centers will gather the information from this effort into a centralized Web-based database they will make available to the scientific community to promote and support human immunology research.
"This research effort represents a major expansion of efforts to define the principles of human immune regulation, instead of relying on findings from animal models that have limitations and cannot always be extrapolated to people," says Daniel Rotrosen, M.D., director of the Division of Allergy, Immunology and Transplantation at NIAID. "The knowledge gained also will improve our understanding of the range of vaccine responses in particular subpopulations, including newborns, young children, the elderly, patients taking immunosuppressive medications and those with underlying diseases of the immune system, such as allergy and autoimmune diseases."
The following six core institutions and principal investigators will participate in the inaugural program:
- Baylor Research Institute, Dallas – Jacques Banchereau, Ph.D.
- Dana-Farber Cancer Institute, Boston – Ellis Reinherz, M.D.
- Emory University, Atlanta – Bali Pulendran, Ph.D.
- Mayo Clinic, Rochester, Minn. – Gregory Poland, M.D.
- Stanford University, Calif. – Mark Davis, Ph.D.
- Yale University, New Haven, Conn. – David Hafler, M.D., and Erol Fikrig, M.D.
More information about NIH's Recovery Act grant funding opportunities can be found at http://grants.nih.gov/recovery/. To track the progress of HHS activities funded through the Recovery Act, visit http://www.hhs.gov/recovery. To track all federal funds provided through the Recovery Act, visit http://www.recovery.gov.
NIAID conducts and supports research—at NIH, throughout the United States, and worldwide—to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets and other NIAID-related materials are available on the NIAID Web site at http://www.niaid.nih.gov.
The National Institutes of Health (NIH)—The Nation's Medical Research Agency—includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.
Friday, June 18, 2010
This was just really shocking to me. This study was done in Europe. After all we have been told for years about the incredible benefits of drinking tea, especially teas such as green, black and white, and now this study shows tea drinking, especially in women could increase the chances of you developing Lupus and/or RA by over 70 percent! The above link gives you some insight into the study, and here is another link. I am anxious to see what else comes out about this. So far this morning, I have not found anything on the regular Lupus sites about it. But, I am sure there will be much information published soon. If you see anything about it, feel free to post and let us know.
Thursday, June 17, 2010
See the URL:
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
Thursday, June 10, 2010
OMG!!! OMG!!! Talk about AWESOME NEWS!! Glaxco Kline JUST SENT THE ONE AND ONLY LUPUS MEDICATION INTO THE FDA FOR APPROVAL TODAY!!! I am so totally excited. It could be approved where I could start using it by either later this year or very early in 2011. OMG!!! This is so incredible. The story follows! This brings tears of joy to my eyes. I have been praying this medication gets to the FDA and gets approved soon. Anyone with Lupus knows just how incredible this is....http://news.morningstar.com/newsnet/ViewNews.aspx?article=/DJ/201006100800DOWJONESDJONLINE000465_univ.xml
Tuesday, June 1, 2010
The link is above... please sign and pass onto others who will be affected by this...
Thanks so much Rhia
Thursday, May 27, 2010
Being the coupon clipping, bargain hunting, watch something until it goes on sale down to the price I think its worth, fanatical bargain, cheapskate of the world .....LOL... seriously I share this link with you. Nothing gives me more pleasure than saving large bucks on things we need daily, as well as those cool clothes I want but refuse to pay top dollar for. So, yes I clip the Sunday paper coupons, I now also print them from the internet, I watch the major pharmacies weekly ads and clip their store coupons, I use the free items coupons from our local market, and I watch clothing stores coupons, percentage off sales, and when it feels like it is a true bargain for my budget I then rush in to pluck up those things at many times a tiny fraction of it starting price. Talk about a high when I go in to my local pharmacy and save 70.00 plus between sales, store coupons and manufacturer coupons. You can clean up on things like vitamins and supplements with buy one, get one free, a store coupon and one from the manufacturer. Suddenly that 40.00 bottle of supplements goes down to 5.00! IF you feel like it is lots of work, wrong... once you get your system down as far as watching for, clipping them, looking at weekly ads (now some of the stores actually put the ads that are coming out on Sunday, in the paper and online days in advance so you can be ready with coupons in hand on Sunday when the sales starts.)
Wednesday, May 26, 2010
The URL is:
Thursday, May 13, 2010
Saturday, April 24, 2010
I will also enclose the URL from Care 2 where I read this...
Deep down we all wish to live a rich and enlightened life. That is why we make those resolutions every year, for greater biological efficiency, less disease, increased finances, a more successful career, and an increasingly better quality of life. It is still not too late. Only a few months have passed and there are several glorious months left to turn a new leaf, open a new chapter or just quietly revel in the sudden newness of your life.
You can still make your decisions about how you can add more life to your years.
Here is a good list of some wise suggestions to enhance the quality of your life on day-to-day basis. I hope they will bring much sweetness and a tremendous change in your outlook towards life.
- Great love and great achievement involve great risk. Take the risk anyway.
- When you love someone, love them deeply and passionately. You might get hurt, but it is the only way to live life fully.
- Don’t let a little dispute injure a great friendship. Make amends immediately.
- When you realize you have made a mistake, hurt someone’s feelings, take immediate steps to correct it. Ask forgiveness.
- Keep your arms open to change, but don’t let go of your personal values.
- Talk slowly, but think quickly. Rationally.
- Quiet the voice in your head that says “I can’t do this.”
- Don’t quit, no matter what. Confucius said, “everything comes to those who wait.”
- Always live in a radiating possibility; become part of life’s song.
- Make conscious effort to change at least one negative attitude in your personality everyday. Surprise yourself.
- If you must fight, do it in a fair manner. Without calling/dropping names.
- Avoid judging people by their relatives. Accept them for who they are.
- When someone asks you a question that you wish to avoid answering, smile and ask, “Why do you want to know?”
- Remember that silence is sometimes the best answer.
- Spend some time alone. It has great potential to recharge your energies.
- Try to live a good and honorable life because when you get older and reflect upon it, you’ll get to enjoy it a second time.
Friday, April 23, 2010
Thursday, April 15, 2010
Monday, January 25, 2010
I hope this video makes you mad.... really mad.... mad enough to open your mouths, voice your opinions and say hell no, we will not stand for itl...
Tuesday, January 19, 2010
Sunday, January 17, 2010
His name is Danny. He is about 42. He is a member of a nurses union in California. The head of the union approached Danny, as well as a couple of others from their hospital about joining the volunteer efforts for Haiti by being on the USS Comfort, which is one of the floating military hospitals, something like it holds 900 beds... and it completely self contained.
So Danny said yes!! He leaves this coming Wednesday to fly to Jacksonville FL where he will board the ship. He will be gone at least two weeks. :) I commend him and all of the civilian people who are donating their time they could be pulling shifts and earning their wages, to make such an amazing difference and with any Have to think about it, he said YES! immediately! We are so incredibly proud and envious a little of him. For I have said it 50 times, if my health was not an issue and they needed me for something I could help with, I would be on the first ship or place, headed that way.
So through Danny's unselfish act, we are living the situation through his eyes.It is truly incredible that he, as well as the other thousands of volunteers go to provide rellef to those who otherwise might perish with the thousands that already have.
Friday, January 15, 2010
There are visions of children injured wandering around as they pass those not so fortunate laying covered up around their feet. The injured sitting in the street, some not able to walk, no one to help them, for those that walk by, cannot even help themselves. I cannot begin to explain in the depths of my heart, just how fortunate I feel. Even though we suffer from Chronic Illnesses, Pain, and so many hardships, nothing compares to what those Haitian survivors are dealing with. Homes and all wiped away. Many of their loved ones dead, or buried beneath the massive piles of rubble. No shelter from aftershocks that range sometimes over 5 on the Richter Scale. No clean water, no food and n0 fuel to go and be able to get supplies. As many countries including our own US go hurriedly to help, it will be lifetimes for some of those before they will ever see what seems like home. It is a day of sorrow, it is a day of bravery, it is a day of sacrifice, of humbleness, of mourning for those that lost their lives, and even more grief for those surviving knowing all too well without medical assistance, water and food, they may die also.
Thursday, January 14, 2010
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...
Monday, January 11, 2010
My Grandson is ill with the RVS Virus. He had to be hospitalized today, due to complications with his asthma. He is only 7 months old. Please keep him, and my daughter, son-in law and her two other kid in your thoughts and prayers please.
I appreciate your thoughts and prayers so much. It is difficult for me to be this far away. They live about 30 out of Corpus, so they are ove 6 hours away from me. When I find out more, I will post and let you know...
Hugs to All, Rhia
Friday, January 1, 2010
OMG! LOL! I guess I am not the only one in the boat! The first thing out of my mouth when I heard this on the news yesterday was "IS He dead?"!!!!I I know that is not the Christian thing to say, but it appears if we are going to hell wishing that upon this scum bag, bigot, hate mongering, soul sucking, demon possessed lying bag of monkey crap, that has spewed his vile, hatred around our country and the world, then I shall be in good company! I will not apologize for how I feel about his gruesome, cold hearted, yelling, ill willed, hateful, and full of bigotry statements he makes about our country, our President, and everyone that we should respect. I will not apologize for hating what he stands for... which is what most of us loath. I will also say it will be a cold day in hell before I ever listened to one of his radio shows. And of all people, if Rush decided to kick the freaking bucket, NOT PALIN!!! That would be the sin of all sins. That colored dyed red headed witch can keep her frozen broom stick up there in her igloo & remain there for eternity as far as I am concerned! She does not know how to speak proper English, so how the heck would anyone think she could do a radio show? I would rather hear an intelligent monkey, or even far better than that, my "talking" Chi-weenie, Bubs, can speak better than that old wind bag of what some call a hockey Mom. I would love to tell her where she could put that hockey puck and stick! I say we ship both of them to the South Pole in a rubber raft, with NO RADIO, no phone, and only enough food and water for a week! They can share an igloo down there with the penguins.