A Beginners Guide to RA: How to Be a Self Advocate

Thanks so much! Good luck with your appointment - let us know what happens?

what is the choking and voice loss from?

Vocal cords have joints in them too. Cricoartynoid joints can stiffen up and the larnyx is "immobilized" I guess. It can make you hoarse or lose your voice. If it is severe, you can also have difficulty breathing. But it usually passes and rarely requires treatment - so they say. Also, RA nodules can form in that area making it hard to talk. Or changing the voice. There are some older discussions in RA central in which this is discussed more in depth. If you need to know more about this and you cannot find it, you can let me know and I'll try to help you find it. 

Kelly

www.rawarrior.blogspot.com

That explains a whole lot about my occasional laryngitis. Thanks for posting that - I had no idea.

A wee techy tip: don't post your email publicly - it can be found by a spam bot. Or if you do, write it like this: nameATdomainnameDOTcom.

Lene,

oooo. Can you get in there to remove it for me?

I've passed your request on to my producer.

thank you, i seem to have a 'frog 'in my throat a lot i'm clearing my throat alot  is that what happens? thank you for your time is there a name for this .have a great day wendy

Could be that.  Or allergies. Or I've noticed that the Biologics really dry you out, so if you're on one of those, could be you need to drink more water.  If you're worried, ask your doctor to check you out.

Aw, You're going to make me blush...

Thanks for commenting!

There is something wrong with a system where doctors are forced to take some indications that they can't spend time with them.  Thanks so much for posting the "behind the scenes" secrets/reality. This is very valuable information.

Finding a good one is like finding gold. She sounds absolutely wonderful. I hope you find somebody who will work as well with you in your new home.

She was worth her weight in gold!  That doesn't happen very often.

I moved from Pittsburgh, PA to Las Vegas, NV in Jan 2007 - talk about deplorable health care - ugh.  Nevada ranks 51st - which I said - how can that be - turns out Puerto Rico is in 50th!   For over 2 years I have traveled back to Pgh every 3 months to see my doctor, it is tax deductible and worth every penny.  If you have no luck in your new town, travel back until you do find one locally.  YOUR health is priority and keep your receipts for your travel - it is well worth it, though expensive.  With our chronic disease we need to keep track of ALL our expenses, to and from EACH and EVERY doctor mileage wise, copays, Rx cost and then travel expenses, education expenses, etc - it does all add up and every penny counts.  Make sure that you always remember the priority - that is YOU!  Go back to your old doc until you find one - trust me!  It was a long painful flight to and from, motels, car rentals, etc - but worth every penny when you don't feel like you have to "validate" your problems all over to a stranger who isn't going to give you the time of day and you are just a medical record number - go where the care is, that is the only way we are going to get quality medical care.  I would line up all my docs, PCP, rheumatology, dermatology, dental, and so on and get it all done every time I went back.

51st?  Seriously?  Wow...

Thanks a lot for posting your comment - that's very valuable information. It had not occurred to me that you could keep your old doctor and claim the expenses.  if you have the time and inclination some day, would you mind writing a SharePost about this part of your experience? They get more traffic than the comments on this piece and I think many of our users could benefit from knowing this.

Not a problem, I will be glad to.  Currently, I am a survivor of 34 surgeries under general anesthesia (so I have tons of expertise on that side of the patient gown) and prior to becoming totally disabled at age 37, I worked in the medical field so wore the labcoat and scrubs - so I know that side of it also.  It certainly has helped me.  I've learned a great deal on what makes a great patient and what really honks off a good physician and how to get their attention, the positive way.  There should be an article in August' issue of Arthritis Today about me and my two service dogs, as I rescued 2 dogs 8 years ago and through love, they began to help me and then with a little bit of training they became my lifeline to things below my waist that I could not reach anymore, or grab for small items that my hands could not grasps anymore.  I believe in the saying "when someone gives you lemons - make some darn good lemonade with them".  Give me a few days to grab my thoughts around the issues, as I am now the sole caretaker of my Father who had a massive stroke 2 months ago in Florida - I'm exhausted and my husband lost his job 3 days ago, after nearly 30 years of service with them (and the ONLY reason we moved to Vegas)  including our health benefits so I am still numb with that concept and realizing that now I have to learn the ropes around compassionate use medication through the pharmaceutical companies.  A BIG bump in the road of life is an accurate description, but also - one more piece of information to learn and share with others.  I certainly will oblige you and everyone else that I can help. 

HI Tamirose!

Believe me, I truly have considered taking the trip back to Florida to see my doctors.  I hope to have an appt. scheduled with one she recommended to me - they are playing "fax" right now.  If I don't find one I'm comfortable with here, I would definitedly consider that as an alternative.  I've been her patient for about 5 years, and finally discovered I have Mixed Conntective Tissue Disease.  We started Orencia a few months ago,and she felt we were on the verge of really making a breakthrough in a few more months.  But circumstances as they were (my boyfriend of almost 10 years asked me to leave because HE was under too much stress - please!), I really had no choice.

Thank you for responding to my post.  It is so good to have people who actually understand what we go through with these type diseases.  I know they have certainly helped me a lot, knowing what others are going through,

Tina

Hi.  New on this site, but noticed your post in a search.  I am located in south florida and definitely need a great rheumatologist.  I see someone now that I like, but my symptoms don't seem to match my blood work and I have been difficult to diagnose.  Now he is taking an educated guess and wants to put me on meds in 2 more months, depending on what my symptoms show.  I understand that some of this is not black and white, but I need a second opinion.  Would you kindly tell me the name of this great doc you found in florida?  I am also open to flying somewhere (my doc told me south carolina and ny are the best places to go).  So, if anyone has a recommendation (especially in FL or NY) I would appreciate that as well.

thank you,

Sara

Hi Sara,

I would be happy to refer you to the rheumatologist I saw in Florida.  She is located in Largo, which is about 20 minutes from Clearwater, where I lived.  Her name is Susan Zito and she is with Suncoast Internal Medical Consultants.  Her number is 727-595-2519.  She and her staff are wonderful. I wish I could have packed her in my suitcase and brought her with me.  I cried when I saw her the day before I left for Florida.  She's such a caring, warm woman.  She is in a practice with other doctors, internal medicine, gastro, etc.  I know you would like her.

I saw one here in Columbus the other day, and he wants to scrap everything she has done for me over the last 5 years and start from scratch.  He refused to schedule me for my Orencia infusion and my reclast (for osteoporosis) infusion, which are both due now.  I was very disappointed and am planning to try to see someone else before I have to go back to him on Aug 25th.  I hope to find someone I'm more comfortable with.  The thoughts of having to start all over again is terribly depressing.

Good luck with your search.  I hope this helps you.  I know what it's like trying to find a doctor you can trust.

Tina

Hi Tina!  I hope you remember me, we are going to Florida this week and I just googled your name and clearwater fl. and this came up. I am so sorry to hear about your RA. If you are the Tina I remember you have three kids, Brian, Kristen, and Tara. Jacqui and Kristen were best friends when we lived in Alabama. So if this is you and you want to email me, this is Sandi by the way, try cadle19@hotmail.com, I would love to hear from you.

yeah, it does take a while to learn not just this, but also to work the system, doesn't it?  Glad to hear you got there you've found your way there.

Thanks for commenting!

Hi, I hope that your rheumatologist can give you the answers you need.  Its a long, long slow process but keep on reading.  A book that I would recommend is "Living Well with Autoimmune Disease" by Mary J. Shomon.  It answered many of my questions, but better yet I felt I wasn't alone in this.  I was diagnosed in Sept. 08 and have been taking Plaquenil but I don't know if it is really working.  The pain is not as bad as it first was, but it never really leaves.  I'm afraid to stop taking it, though, because I've read reviews that once this medicine is stopped it will no longer work if you try to begin again.  The only alternative is a stronger drug with more side effects.  But I think it was a good choice to start here.  I believe its always best to begin with the safest drug possible in the hopes that it may work.  Best wishes to you.

Thanks for the welcome and I will try and find the book you mentioned to me

Plaquinil can take a while to work, but you've been taking it for nine months and if you don't know if it's working, then it probably isn't working that well. I would suggest you go back to your rheumatologist and talk to him about possibly increasing the dose or maybe supplementing Paquinil with another DMARD - it's quite common for people to be on more than medication for RA. Sometimes, you need more.  It's important to treat RA early and aggressively to minimize damage to your joints - the sooner you get your disease suppressed, the better your chances are to continue to live a relatively normal life.  I understand your hesitation with the "bigger drugs" - they can sound really scary. Please know that although some people do have more serious side effects, many people take these drugs with completely manageable side effects.

so sorry to hear you've been diagnosed with RA - although you certainly can find a way to live well with this disease, it would be nice if we didn't have to. The beginning can be pretty overwhelming and I would recommend you check out our basics of RA area, as well as our area for the newly diagnosed that has lots of posts on the different aspects of living with RA. In terms of books, I can also highly recommend The First Year with Rheumatoid Arthritis - you can read more about the book and an interview with its author here.

A big part of adjusting to living with RA can be reaching out to other people in the same situation. We have a great community here of very supportive users so don't hesitate to ask questions or post a SharePost of your own.  Good luck! Please let us know how your appointment goes?

thanks for saying that - the knowledge was hard-won. And thanks for the inspiration to one of the questions.

I thought that sounded familiar!!! :)

Aw, shucks...

Glad you liked it and thanks for commenting!

Thanks much!