Confusion and Concerns - any suggestions?

We were planning a trip to Washington DC in October. But I have lots of concerns due to both of us and our health issues. I really need that pain pump done before the 1st of the year, due to my insurance situation. I may have to change insurance at the 1st of the year, and don't know how that might effect me. My pain, plus the Lupus etc is a huge concern for a trip of 10 days, and thousands of miles. But, I also feel he needs to get his stomach checked out. He has been having severe issues with nausea & even sometimes vomiting blood. He gets sick trying to eat. He does not have insurance so we need to get him into the clinic that can take care of this on a sliding fee scale. He has been there before, but he needs to redo paperwork, and it takes awhile to get an appt. & get the tests etc. He also has very bad pain that requires strong pain medication due to his lower back problem. We are worn out when we just take a day or overnight trip to Bossier or the casino in OK. He complains enough that I have to do some of the driving. And that is only a 2 or 3 hour trip & then back. I just don't see us driving 1300 miles one way, and not having major health issues. Plus, we have both of our dogs, that are so used to us, they get upset when we are gone a few hours. When I go into the hospital they lay around and won't eat or drink for days sometimes. We need to take them with us, but my Pug is very prone to motion sickness, and she hates riding. If we leave them, I fear our neighbor kid, even though they are good neighbors may not come in & take care of them, just due to the fact they get all hyped when any one comes in other than us. They jump, bark and just get nuts, because of being used to just him and I, and not really having much company. The little one is very protective & he nips sometimes until he is used to you. I fear the boy might not come around due to all of that & I would never forgive myself if something happened to either him or our puppies. Any one knows when you have a chronic illness or pain, there is lots to consider when taking an extended vacation of any kind. I just feel we should postpone the trip until spring. Save up more money, so we can rent a small motor home, take the dogs, and then we can have more room, I can get my pain pump installed, he can get his stomach looked into... and the trip would be much more pleasant. But, I knew if I even mentioned it, he would get upset. Well, I tried to say something yesterday, and sure enough, he got upset before I could even explain all of my concerns. Now, we are just "being civil" but not really talking. Which is not like us. I don't know what to say or do anymore. There is too much as stake with our health, our home, our lives, our animals etc. We need to have tires put on our car, and get the transmission checked. I just feel I should at least be able to voice my concerns. I realize he is looking forward to showing my DC an seeing his step-Mom, and she is all hyped up also. But, I feel my concerns are legitimate and postponing the trip would be better, and then we won't have such worries on our plate in a few months. I don't know what to do honestly.

The Virtual March Begins - American Pain Foundation

http://www.painfoundation.org/take-action/action-network/10000-voices.html

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.

xoxoxo Rhia

A Positive Light for a Change in a rather darkened world right now...

It seems everywhere we turn something bad is going on. Whether it be more bad news about the war, its casualties, the economy, foreclosures, Wall Street, job losses, Mother's Natures Wrath, and a million other terrible catastrophes, from our local news to the internet, the bad stuff is all around. I like watching Brian Williams on the Nightly News, because they always end the program with something or someone "Making a Difference" for the good.

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:


http://itstartswith.us/about/index.html


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!

Rhia

National Pain Awareness Month - September

The American Pain Foundation is sponoring National Pain Awareness Month for September. Along with that they have a pain awareness "virtual march" on Washington DC you can participate in. There are many ways t help out in this critical area of much needed research, funding, awareness, clinical trials, and much more.

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.

http://www.painfoundation.org/take-action/action-network/virtual-march-2010.html

Invisible Illness Week Outreach Described on Video By Founder

http://invisibleillnessweek.com/2010/08/10/invisible-illness-week-outreach-described-on-video-by-founder/

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....

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

Visit Owning Pink's Pink Posse

Four Possible Causes of Migraines and some Natural Remedies

https://www.qualityhealth.com/featuredArticleSegmentSubmit

By Jeanne Faulkner
Reviewed by QualityHealth's Medical Advisory Board

What can you do to relieve your headache besides hit the medicine bottle? Here, four natural headache remedies that will knock out your headaches right now and help prevent them in the future.
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

MOre great news in the realms of Lupus Research, Genetics and the Enviorment

http://www.eurekalert.org/pub_releases/2010-08/nioa-nle081110.php

NIH launches effort to define markers of human immune responses

Recovery Act enables research that could help improve vaccines and therapeutics

A 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.

A portion of the funding for the centers will be dedicated to support smaller studies proposed by investigators outside the program, including pilot projects, the development of research resources and clinical studies.

###

The activities described in this release are being funded through the American Recovery and Reinvestment Act.
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.

A Shocking Study Reveals Women Tea Drinkers and the High Chances of Lupus and/or RA

http://www.eurekalert.org/pub_releases/2010-06/elar-wwc061710.php

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.