Resources for newly diagnosed with RA (Rheumatoid Arthritis Disease) #HAWMC Day 4

I remember when I first got diagnosed in 1999,I had no clue what my life commitment to RA meant,yes that is sarcasm, I was told I needed to keep taking NSAIDs even if I felt well. You can look for my story on my previous post My RA journey and get an idea of what I went through.This was before Facebook,MySpace and Smart phones,internet was not what it is today. When I got re-diagnosed or suspected that RA was more than just achy joints I looked everywhere that I could on Internet and wherever I could and had energy and the brain power to understand what was happening to me.
   I think one of the first places I went to was WebMD and look up Rheumatoid Arthritis to understand if any of the symptoms made sense with my previous diagnosis of RA years before.Another site that helped me immensely was Healthcentral Rheumatoid Arthritis page and that led me to another blogger and writer Lene Andersen.Her blog the The Seated View talks about her life and RA.She has written a book since there that is a must guide for people with RA, the book is called "Your life with Rheumatoid Arthritis".
  Other bloggers and activists that I highly recommend looking up is RA Guy,  Kelly Young "RA Warrior",RA Chicks, and the Arthritis Foundation. There are many support groups on Facebook,some are closed meaning only members can see posts and some are open where anyone can read the posts.
  The most important thing is for you to arm yourself with information about this disease,have the best attitude possible at the time all the scary info is inundating your brain and go and hunt hmm I mean find a good Rheumatologist. Remember the doctors work for you and they get paid.If you do not feel like you are getting all the attention you deserve as a patient KEEP LOOKING!! It is so important to surround yourself with a good team of doctors that will listen to you and respect your input and questions that you will have. I have a team now that is involved in my care of a General Practitioner (GP), Rheumatologist, Orthopedic Dr, Podiatrist, Pulmonologist, and hopefully soon a Pain Specialist. I know it sounds like a lot of people to keep track of but RA is more than joints,it affects the whole body and while you are at it find a good Psychologist or Counselor if possible as well.
  Lastly but not least educate your family and take them with you to your doctor appointments.A lot of information and big words are thrown around and we definitely need a note taker at times.I always write down the questions and concerns I have before making it to the doctor's office.I forget a lot of things and better safe than sorry.
  It is so helpful to find a few people you can talk to about what you are going through and understand you. I have a circle of friends from around the world that I can talk to,text,email or whatever when I feel like a pity party is about to happen, I can also ask if any symptoms I might be having are normal or need attention right away.
  Sheesh I think I gave you lots of ideas and info to start your journey. Remember pain is a valid feeling and symptom. No you are not a hypochondriac.Yes you deserve answers. No you are not alone,others have walked in your shoes per say and have helped others like you and me.

         

blogging challenge from WEGO

OK, if you are wondering what is going on in my blog I have decided to be part of the Health Activist Writer's Month Challenge for the month of April hosted by  WEGO

  I know I am not a "writer" but this year has just been the year to learn about advocacy for Rheumatoid Arthritis and other Auto immune Arthritis diseases ( about 120 different kinds)...

In January I applied for a National travel award from the Arthritis Foundation and I got it!!! So I made it to the Arthritis Foundation 2013 advocacy summit in DC this past March. The funny thing is that I was there during the "Snowquester" hehehe.

  I signed up to become an ambassador for the AF and have met some awesome people in the process, the Kentucky ambassadors met with Senator Mitch McConnell and his Health Legislative Aids.Dr Klippel President of the National AF joined us for that meeting.

  We also met with Senator Rand Paul's  Health Legislative Aid as well. She is not in the pics ;)

So for the few that will be visiting my blog you will be seeing short posts this month on different topics.I need to catch up with a few and might even combine a few days in to one post....Enjoy!

Wordless Wednesday, Health Activist Writing Month Challenge 2013

Wordless Wednesday a bit late. The good, the bad and the ugly.









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Happy Valentine's Day

I am glad I am surrounded by people that love me and offer me their support and friendship always. To my husband,you are such a special man and I am blessed to be called your wife. To my kids, you fill me with happiness and joy to see all of you grow and become such interesting people.To my family, I miss you and love you and are such a big part of who I am now.To my friends,past and present, your friendship has transcended the time and distance you are there when I need you and I can only hope I can be there for you when you need me.
Happy Valentine's day!

I STILL LOVE LIFE,IT IS MINE TO LIVE AND MAKE THE BEST OUT OF IT.

Hi!
I am still kicking,well not literally I wish I could hahaha. New meds,new challenges,no job. It took so long to get to the point of being really sick and barely getting out of bed that is taking a long time to get a tiny sense of well being.
A lot of changes in social life (which one?) I missed seeing two very dear friends because I got sick when I visited home last time and I did not even try to look up every one. I hate being thought of as unreliable but how do you explain feeling ok and almost normal one day,and so sick and exhausted the next or even from hour to hour.
There is new blessings too,my new friends found through trials and heartaches of new found auto immune diseases.There is a bond there that no other can understand even if you have not ever met each other face to face.
There is also the blessings of family and friends that are there to support you when every one else forgets.

Missed you!

Oh dear blog how I have missed you... I have not blogged in months because I was a little bit depressed. I have been on Enbrel since January and even though I have seen improvements the flaring still happens. My fibromyalgia has been acting up also and rheumy has added Lyrica and increased Cymbalta to my daily meds. I am going through a flare in my hands and feet right now but one of the good things happening is a new group I had started on fb for women and including all Auto Immune diseases not only RA. The support group is just filled with caring people that help with jokes, heartaches and life in general.
I will be re-acquainting myself with my blog again.
Till next time ta ta!

Happiness!!!

My happiness does not derive from me being healthy, rich, employed, married or single. God has given me the insight to learn to be happy with myself and accept myself first.
The bible says in:

1 Corinthians 13

 ¹ If I speak in the tongues^[a] of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. ² If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. ³ If I give all I possess to the poor and give over my body to hardship that I may boast,^[b] but do not have love, I gain nothing.

 ⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.

 ⁸ Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹ For we know in part and we prophesy in part, ¹⁰ but when completeness comes, what is in part disappears. ¹¹ When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. ¹² For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

 ¹³ And now these three remain: faith, hope and love. But the greatest of these is love.

I always have known that God loves me and He is love but not alwayd did it translate in to my heart that I have to love myself too and receive His love.

Just like it says in verse 8 through 12 and it was just revealed in my heart, everything will pass away, and even though I receive God's revelation of His love in my life and His purposes for me in His kingdom this is just but part of what the fullness in Him will be.

God I pray for you to fill me with your love every day because if I love myself the way you love me I can love and show compassion to others. Show me how to serve you everyday in the midst of my pain.

 I will never have all in this life therefore I cannot gauge my happiness on riches, health, others love towards me or what the world says is success, I tried it before and it don't work. 

I hope I am starting to think like a woman (man) and not a child.

Be blessed....