Wednesday, January 29, 2014

Rheumatoid Awareness Day Feb 2. 2014 (RheumPF)

Sunday marks the second annual Rheumatoid Awareness Day. 




You can go back to this article from my local newspaper from a year ago. It was supposed to be an interview with them and me, but they ended up interviewing my husband on the phone. Either way they spoke about RA so something came out of it :)


http://www.wahpetondailynews.com/news/article_c59a27f4-6bbb-11e2-90e5-001a4bcf887a.html

Please go to the Rheumatoid Patient Foundation's site to read the press release for this years event and to get more information. 

There is #Rheum Chat scheduled on Twitter for 10 am on Saturday February 1st and  a Facebook chat at 11am EST with Dr. John M. Davis from the Mayo Clinic.


Together we can spread awareness. Sunday is Rheumatoid Awareness Day, WAAD14 is on it's way we have the power to make changes together, to educate, if not us who will? Please join us!
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Where I've been since my last post


UPDATE: Due to mine and other volunteers ongoing illness I have decided in is in the best interest to cancel my chat scheduled for January 30th, 2014 until we are all recovered from the viruses that have invaded our bodies.

I will post the new date and time asap thank you!





It started with this, yes I know I look bad and I have a rash on my cheek, I don't look much better as I sit here typing this in my pajamas.
I ended up here:



I've been in bed since living off a diet consisting of chicken broth and tea. 

 I also seem to have reverted to a child in the past 2 weeks! My husband came home with a stuffed monkey (pictured below) to cheer me up. Anyone who knows me knows I'm not a stuffed animal person but there's just something about this monkey!

For the past 12 years my dog had been my companions, my source of comfort when I was sick, in pain or recovering from surgery.  As you know we lost him this past summer and at the moment we have no plans to replace him so I guess the monkey has become his surrogate.



A visit to my Rheumatologist, x-rays and a subsequent visit to a Podiatrist confirmed I will require surgery on both feet but before this happens I have to wear a lift/brace on my right foot for an undetermined amount of time. They feel I won't benefit from the foot surgery until they try to correct the foot drop which was caused from the nerve damage after my knee replacement.

Things have been challenging to say the least lately, due to my compromised immune system I seem to be catching and keeping everything that is going around this winter but I will remain positive. 

I have been keeping myself busy (when I'm awake) with volunteer work for IFAA and will be updating you on that shortly. 

For now here is a sneak preview of WAAD14!









I hope you are all well and avoiding the illnesses that seem to be running rampant this winter. Until next time stay well and warm!



p.s. I will be doing a live chat on the IFAA Facebook page this Thursday night. The details are on the poster. See you there!









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Monday, January 13, 2014

The next edition of I am more than my disease. Pink: the Truth About Love Concert.

I saw the announcement for Pink several months ago. I have been a huge fan for as long as I can remember, she is what I term as (excuse the language) a woman who "kicks ass"
She doesn't appear to be afraid, she has a strong sense of self and she definitely isn't afraid to stand up for herself. It doesn't hurt that she makes great music!

We managed to get tickets, they weren't the best but still we were going.
Due to circumstances beyond her control (she got sick), which I can relate to I don't know from one day to the next how I'm going to feel. 

That was 2 months ago, the date was fast approaching, I made it through the holidays then I caught something I'm not sure what it was but it has never really gone away.
Add to that the issues I'm having with my eyes and feet, I was getting anxious. I spent most of the week before the event on the couch doing nothing, I was not going to miss out on something I had wanted to go to for so long due to my diseases yet again!

I planned everything ahead to the best of my ability having been to the Dome before. I knew where the handicapped parking was, where the bathrooms were, how many stairs I had to climb, where to buy water. I planned to eat something ahead of time. I wore something I would be comfortable in for several hours I was good to go.

The morning of the concert I woke up with the beginnings of a Migraine, this was not happening! I took my usual medications, drank a ton of water, ate chicken broth and rested until it was time to leave.

Off we go, the roads were a bit slippery after the cold spell, it was a balmy 40 degrees, a hint of spring!

The drive there is about an hour from where we live, it was pretty uneventful until we got to the city. The closer we got to the Dome the heavier the traffic got we were lined up bumper to bumper. People were trying to cut in, almost hitting other people's cars it was crazy.





Finally we arrived, there were no handicapped spots left, there were many people left to park in regular spots. Luckily we found a spot not too far away.

We had to wait outside in line before entering the building there was a delay for some reason in opening,  I got in and went off to the bathroom and was met with another line! This line was full of screaming, loud drunk women, they were holding a beer in each hand. Mini rant, why even bother? Why not just stay home, get drunk and listen to Pink? It's not like you will even remember you were there!
It took probably 30 minutes to accomplish the trip to the bathroom.

It took another 30 minutes or more to get to our seats, for some reason they had set up four beer tables in the middle of the lobby leaving no room for anyone to walk. Can you imagine a stadium  full of people entering and leaving at the same time? Over 20,000 a lot of them drunk going in opposite directions,  pushing and shoving all the way through. One lady yelling "excuse me excuse me I'm trying to get through". Lady we all are! Her drunken friend, "oh go push through, it's your night, it's your time to shine, you're special do it do it"!
On our way out, I had to go to the bathroom again, leaving there was only one way out. My husband was in the opposite direction. I got pushed the opposite way and ended up leaving through the exit door, I called my husband told him I wasn't going back in and to come and find me!

Was it worth it? YES! The delayed start time due to security issues? (There wasn't enough of them) YES! The obnoxious drunks? YES! The uncomfortable seats? YES!

I would do it all over again in a second, I am still sore, coughing, sick and will likely pay for it for a while but every second was worth it! Pink put on a show like nobody I have ever seen. She flew from one side of the dome to the other, she played the piano, she was funny, she cared that she put on a good show. To use words from one of her songs she was "F---*in Perfect!

The opening band "The Kin" a band out of Australia was a great start to the evening as well. The drummer played the drums with his hands, they have a refreshing uplifting, catchy sound that makes you want to sing along to their music. I am a fan!


Here are a few pictures :) 













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Thursday, January 9, 2014

Guest Post (Types of Eldercare)

With more seniors remaining independent longer, it doesn’t hurt to know the differences and advantages to each type of eldercare. I’ll keep this post short and only talk about the five main types: independent living or retirement communities, assisted living, in-home care, continuing care retirement communities, and nursing homes. Let’s get started.


Independent Living:

Independent living allows seniors to remain within their own homes if they are still able to perform daily tasks such as cleaning, driving, scheduling appointments, taking medication, and cooking. This is generally for people who do not have any major health risks and do not need extra supervision from either a home-health provider or a licensed nurse. Generally, independent living or retirement communities exist within single apartment complexes, condos, or even free-standing homes situated around a club house or activity center. Sometimes residents choose to purchase a unit within a retirement community simply for the social aspect of becoming friendly with people their own age with activities nearby. Other times, people choose it because they would like to live in a home or apartment that does not require too much maintenance. The major advantages to independent living are living autonomously with a spouse, access to transportation/age-related services, and a rich social network of friends.

Assisted Living:

Generally, assisted living is a wise housing option for seniors who need help with some daily-living tasks. Maybe they need help with medications, cooking, or have lost a spouse and are not capable of living alone in the housing situation described above. Prices fluctuate depending upon the amount of care needed, but with assisted living, staff caregivers are available around the clock.
Some assisted living facilities contain single-living apartments with kitchenettes; others provide simply rooms; while less expensive options sometimes require residents to share rooms similar to dormitory style living. Although less independent than retirement communities, assisted living residences have activities, a vibrant social community, and usually group-dining which makes meeting new people easier. Assisted living is a good choice if your loved one needs more personal care than can be given at home or if they need medical supervision, but not the amount of attention supplied by a nursing home.

In-home Care: 

In-home care refers to a hired caregiver either living with, or working in the patient’s home by the hour, to help with tasks such as household chores, doctor visits, or bathing. Unless certified as a nurse, agency-hired caregivers are not licensed to give medication. There are agencies, however, which hire out licensed practical nurses for a higher fee that can give medication. It’s always a good idea to ask caregivers what their alternative plan is if they become ill or unavailable and whether or not they are bonded or insured in case the patient is injured. Also, if you cannot be in the home while the caregiver is there with your loved one, be sure to have a way to document the completion of the caregiver’s tasks. 

Continuing Care Retirement Communities:

Continuing care retirement communities provide both of the situations described above. Sometimes they even include a nursing home in the same location. If you plan early this can sometimes be the best option because as your loved one ages, they will not need to move from their already-comfortable area to receive more medical attention. A resident purchases a unit and as their needs change, the monthly fee to live in the community increases with the higher levels of care. This option also allows spouses to stay close together even if one requires more attention than the other.

Nursing Homes:

A nursing home is usually the highest level of care someone can receive outside of a hospital. While nursing homes provide assistance with daily care, they are generally chosen as a living option because of the high level of medical care available. A licensed doctor supervises each resident’s care and a nurse or other medical professional is always available on the premises. Also, there are both occupational and physical therapists typically available on site. A nursing home is a good choice if a recent health development has incapacitated a loved one, such as a fall or a stroke, and there is no way they can receive the correct amount of care through home-health or another living facility. Sometimes, however, nursing homes are temporary options right after hospitalization or rehab, and residents return home or to another facility after a short period of time.

Conclusion:

Although picking the right living option seems simple, you should always consult your loved one’s doctor and, of course, the seniors themselves. There are many options available to aid in the decision, such as a medical social worker, or even agencies and organizations, which specialize in moving seniors into homes or facilities at no cost to you. Social workers and eldercare agencies can also tell you if you are eligible for federal or state aid, sometimes improving the quality of the facility your loved one will live in by increasing your price range.



Jacob Edward is the manager of Senior Planning. Jacob founded Senior Planning in 2007 and has helped many Arizona seniors and their families navigate the process of long term care planning. Senior Planning provides assistance to seniors and the disabled finding and arranging care services, as well as applying for state and federal benefits. In his spare time, Jacob enjoys dining out and supporting his alma mater Arizona State's Sun Devil sports teams. Jacob lives in Tempe Arizona.






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Wednesday, January 8, 2014

Won't you join us? The International Foundation for Autoimmune Arthritis. (IFAA)

Please join us for a series of chats featuring the Bloggers of IFAA and Systemically Connected
Attention Bloggers! Do you write about Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren's Syndrome (SS), Systemic Lupus Erythematosus
(SLE), Still's Disease, Juvenile Arthritis (JA), and Undifferentiated Connective
Tissue Disease (MCTD/UCTD)

Do you want to be a Blog Leader for the International Foundation for Autoimmune Arthritis and Systemically Connected the official Blog of IFAA?


If you answered yes! Please send me an email at: lorna@ifautoimmunearthritis.org

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Saturday, January 4, 2014

Volunteer for the International Foundation for Autoimmune Arthritis

"The International Foundation for Autoimmune Arthritis is a unique organization in that we aren't run by business executives who consult patients for project development and community need and we aren't patients running the organization who consult business executives as to how to function, project manage, and develop programs. We are both.

IFAA co-founders are former or current business executives and educators who are ALSO patients who came together to establish an organization that addresses the needs of patients today and tomorrow. They have spent the last few years creating the foundation, including an extensive 3-month training course ONLINE for those patients (disabled or not disabled) who are looking to make a BIG difference (estimated time commitment 30-60 minutes a week). After this training volunteers actually help develop and run the programs! You can volunteer from any where in the world, right from your own sofa!

Other volunteer opportunities are also available, including General Volunteering, or signing up to help with fundraising or for World Autoimmune Arthritis Day or to help make and package bracelets. No training is involved in this level of volunteering, just dive in and start helping! 



Here's what a few of our current, Active Volunteers (or those who have gone through the training and help run our programs) say about Volunteering with IFAA:"

“Being a Volunteer with this wonderful “team” has brought me into a realm of advocacy that I could only dream of. Now I know beyond a shadow of a doubt that each day with IFAA means I am truly making a difference.”

“Volunteering with IFAA means being part of a community, having a voice that is heard and that matters, getting caught up in the excitement of projects and information, and having a purpose that is meaningful and far reaching.”

“For years I have felt like an outsider. Part of a club I didn’t want to belong to, a silent, isolated, lonely club. Those running IFAA have been there from day one to answer every question I have & to guide me along the way. They have made me feel like part of the “family”. I feel more powerful than ever, and look forward to being a part of winning this battle against these diseases so people don’t have to fight as hard one day. I’m proud to say I’m a member of IFAA!”

“I had to leave the work force in my 30’s because of autoimmune arthritis, and since then I have felt lost. I have skills and career training, but until I found IFAA I never thought I’d be able to utilize those talents again. They have created an in-depth program that celebrates my personal goals for advocacy all while finding ways to utilize my skills to help our community.”

“Volunteer for IFAA is so much more than “volunteering”. We work together, side by side with the CEO and co-founders, and each volunteer- regardless of how new or seasoned- is treated as an equal. We work on everything from project development to running those programs once funded. I finally feel like I’m making a REAL difference!”


Do you want to learn more about Volunteering with IFAA? Send an email to tiffany@ifautoimmunearthritis.org and put "Volunteer" in the Subject Line. The next full training session interest email goes out tomorrow, so get on the list today!

www.IFAutoimmuneArthritis.org









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Random Ramblings

Happy New Year!

I hope you all had a great start to 2014! I told you I would post something soon, in order to do that I am posting a "cliffs notes" version. I will add to these later.

Christmas was fairly quiet but still a great day. I hope yours was everything you hoped.

December 26 off to my eye doctor, I mentioned before I noticed my vision getting worse. My headaches have been more intense, I can't handle any light, the whites on the t.v. or anywhere bother me. To make a long story short, the refraction test showed changes, not due to my prescription, it is due to Sjogren's. I go back January 6 to get punctual plugs in the top and bottom. I will talk more about that later.


After Christmas I went to bed and stayed there until New Years Eve, I don't know what I caught it just doesn't seem to want to leave my body.

New Years Eve everyone was under the weather, midnight came it was a half hearted attempt to yell out Happy New Year with the frog still firmly in my throat . Back to bed after the ball fell!

January 2, off to the Rheumatologist. Another long story short, x-rays of my chest, feet, knees, blood work, he is now deciding whether to switch me from Humira to either Enbrel or Remicade. He added Evoxac and put me on short term Prednisone. I also have an appointment with a Podiatrst. 

That's the latest, I'm still keeping a positive attitude. This year is going to be a great year. I hope you're all staying warm wherever you are. It's supposed to be record cold here the next few days. If you're living in somewhere warm feel free to send me some warm weather.

Last but not least, if you have a minute. I would appreciate if you would endorse me and all the other wonderful activists on WEGO Health's activist awards page. You can do it through the end of January.

"Talk to you soon!"




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