About me and RA

[Floydian]

I just need to get this out, so I'm sorry if this is a bad place for it. This news isn't a big shock to me, and I doubt it's the worst thing ever, else my Doctor probably would have been calling me. But I finally got my blood tests back that the Doctor sent me for related to Arthritis. I'm not even remotely close to being anything even resembling someone in the neighborhood of the ballpark of an expert, but...

It looks like there's 7-8 results on this form, and for every single one of them, my results came out Positive and/or well outside the reference range of normal or healthy. I mean, not one single solitary test came back with a negative or within normal range result. None of them are even close to the normal range. I knew something was going on, and don't know if they all tell the same story, or if more is worse. But I have to admit that I find myself a bit shocked that EVERYTHING on the tests is ****** up.

Anyway, I just had to get that out, since I can't call a doctor or anything at this hour to clarify the test results, and don't have an appointment to see a specialist until near the end of May.

I think I picked the wrong lifetime to quit drinking.

 

[Princessclab]

Hello Floydian,

I am very sorry to hear about your pending diagnosis of arthritis.
I am a RN and have some advice for you.
Do some homework about arthritis. You need to ask the doctor(s) lots of questions like what are the treatments (not just one). Tell them you want to hear about ALL of the options.
Educating yourself is the best defense in living with this and maybe even preventing or slowing the progression..

You are in all of our thoughts.
Thinking magical thioughts for you,

 

[can84]

Sorry to hear that

 

[Floydian]

Thanks folks. Sorry about venting last night, but I needed to get it out. Today is another (painful) day, but also a new day. Upon reflection, I realize that the tests, along with physical symptoms, may also mean that there's no doubt about it being Rheumatoid Arthritis, and that now I may be able to proceed with any number of possible treatments, beyond just "take two pills and call me in the morning".

 

[GrumpyOne]

I knew someone who had it for more than 30 years before succumbing to something totally unrelated. This person still managed to travel the world and follow interests, to the point of planning for SCUBA diving lessons before the other illness took form.

There's no doubt it'll be rough at times but attitude is everything. There are healthy people that go "woe is me" and hurting people that do life as much as they can. Good luck!

 

[nurse.darcy]

Hey sweetie, you have had a number of misdiagnoses over the years and its good to finally have an answer. At least you can be treated for what you actually have. Study up on this disease, find out the latest treatment options and see if they can get you in to the specialist earlier. A positive diagnosis should lead to an IMMEDIATE consult with a rheumatologist. My grandmother was diagnosed with RA at 35. . .up until she turned 65 she was active and living. . .traveled and did everything she could to stay "alive". However, there was a few years when the treatment she was receiving put her in a wheelchair and nearly killed her.

PM me if you want to talk treatment. I am always up for conversation. . .just remember I work nights and my conversations during daytime hours are usually incoherent and amount to "uh, I am sleeping, was this important?"

Venting usually makes one feel better. Trust me, you can do this and with the new treatment options available out there you too can live without the use of walkers, wheelchairs or even (if you can believe it) pain. . .

 

[Floydian]

Thanks again! I look forward to less pain and more fun! This may even be more of a reason to walk around Disney, instead of sitting in front of a computer or TV. Oh noes! I hasta do more WDW!

I called today and did get an appointment to see a different specialist for next week! Hopefully treatment gets to start soon, along with improvement and happiness. I'm still keeping the original appointment, since that office came highly recommended (which probably explains why there's such a long wait for them).

Most importantly, like most men, I'm a big baby when it comes to being sick. So I know I'll need a doctor or doctors with good "bedside manner". I want my mommy! Waaa!

 

[nurse.darcy]

Thanks again! I look forward to less pain and more fun! This may even be more of a reason to walk around Disney, instead of sitting in front of a computer or TV. Oh noes! I hasta do more WDW!

I called today and did get an appointment to see a different specialist for next week! Hopefully treatment gets to start soon, along with improvement and happiness. I'm still keeping the original appointment, since that office came highly recommended (which probably explains why there's such a long wait for them).

Most importantly, like most men, I'm a big baby when it comes to being sick. So I know I'll need a doctor or doctors with good "bedside manner". I want my mommy! Waaa!

Hun, trust me when I say the most highly recommended doc is not always the best. Sometimes he is popular just "because". However, I do like the fact that you will get two opinions on treatment. Read up, develop questions and ASK them. . .trust me, you will be glad you did.

 

[Graeme]

from me.

 

[bound2travel]

I agree with Grumpy and Darcy. Try to stay positive and read up as much as you can. Your local library may have books about RA - just make sure they are at least within the last 2 - 3 years (anything older than that is considered out of date).

I liked your positive thought of getting out to WDW more. Sometimes just being there can be uplifting. I'm hoping to be there for my birthday this year just for that reason.

Vent all you need - it helps and many of us are willing to listen.

Kristi

 

[Floydian]

So I had my appointment with the Rheumatologist today, and got some good news and some bad news.

• Bad News - From the doctor "You have severe Rheumatoid Arthritis...the worst case I've seen in months...we have to start aggressive treatment immediately..."
• Good News - I get 2 weeks off work...I get to take something better than Advil and Tylenol (Darvocet, Lodine, and Prednisone?)...and best of all, I wasn't imagining things and am not just a wimp who couldn't handle a little pain.

I was kind of shocked though at how many times he used the word "crippled" when dictating his notes.

 

[Hessie628]

Floydian---

Good luck with your treatment. As someone who has lived w/RA almost my whole life (I'm 30 and have/had Juvenile RA) I can tell you that although RA can be terribly painful you can have a "normal" life. I was misdiagnosed and being tested for YEARS. I agree with everyone that you should read up on RA as much as you can. I have especially learned to listen to your body! I'm a bit of a gym rat and even ran track in high school. I got to the point where I had to stop b/c of a terrible flare up. As I've gotten older- despite my urge to fight my "disability", I have learned to not push myself. I want to do the half marathon in WDW in Jan and my rheumatologist is not happy with me, but I explained that if I feel I can't do it- I wont. Also- find support. You have us on the DIS, but make sure there are others. When a college friend decided to go into nursing after we graduated she apologized to me after studying RA. She said she was sorry for pushing me to go out when I said I didn't feel well. She said she didn't understand what I was going through. Growing up with it I never really had anyone who could understand it until my parents developed arthritis so if you feel the need- seek support. Not everyone understands what this is like for you. I wish you the best!
-Jessica

 

[nurse.darcy]

So I had my appointment with the Rheumatologist today, and got some good news and some bad news.

• Bad News - From the doctor "You have severe Rheumatoid Arthritis...the worst case I've seen in months...we have to start aggressive treatment immediately..."
• Good News - I get 2 weeks off work...I get to take something better than Advil and Tylenol (Darvocet, Lodine, and Prednisone?)...and best of all, I wasn't imagining things and am not just a wimp who couldn't handle a little pain.

I was kind of shocked though at how many times he used the word "crippled" when dictating his notes.

Well, at least you have a diagnosis. Ask your MD about a scrip for something called Protonix to protect the lining of your stomach from damage. Ulcers and an ulcerated colon are some severe side effects of the treatment of RA.

Who gets RA?

More than 2 million people in the United States have RA. Generally, it affects more women than men. RA typically develops between the ages of 25 and 50. While RA itself is not inherited, what can be inherited are the genes that may make someone more likely to develop the disease. Although scientists believe it is unlikely that genes alone bring about RA, research continues to discover what role genes may play in the development of the condition.

The above paragraph was imported from the internet. Most people who get RA get it early in life. Unfortunately it is not detected till it starts causing pain. By that time it is a "severe" case of RA. Once in a while someone is diagnosed early but that is rare as most people just continue to take more and more OTC pain relievers thinking they "pulled a muscle" or "it will heal over time". Also, ask your MD about a drug called Enbrel. Read about it. Its not for everyone, but it can slow the progression.

Most of all take care of yourself. Don't contribute to exacerbations and flare ups. Do as your MD prescribes and make sure EVERY SINGLE HEALTH CARE PROVIDER knows EXACTLY what you are taking for what and why. What the dosage is and the last time you took it. You are going to be on a scheduled regimen of meds and many MDs have many opinions on what works for RA and what doesn't. Run any new meds prescribed by outside MDs by your Rheumatologist so he is "aware" and can say yah or Nah. . .

Take care of yourself my friend.

 

[Floydian]

Ahh, thanks folks. So good to have people here who care and understand. And it's so good to know how people can live with it. It gives a lot of hope to a guy who "never gets sick...it's just a scratch...just walk it off...it'll heal on it's own". I've already seen a dramatic improvement on the current meds, probably just due to the reduction in inflammation. The underlying stiffness and pain is still there at times, but at least it not magnified and multiplied by other things.

I forgot, I'm also taking Omeprazole (aka Prilosec) already for stomach problems. I'm supposed to see a specialist about that too, since I've had heartburn pretty much daily for the past 15 years. But I found myself more concerned about the RA and it's meds first, since it was ruining my everyday life. I think I used to take Protonix and whatever that purple pill was back in Reno, before being uninsured for 4 years.

Note: I just looked up my Omeprazole and Protonix, and in their descriptions, they both mention being used to treat exactly what my MD mentioned when he referred me to the specialist..."erosive esophagitis". Sounds icky.

Anyway, thanks again everyone for the thoughts and support.

 

[bound2travel]

You mentioned the heartburn for the last 15 years. Have you been taking Advil or other ibuprofin stuff for as long (if not longer)? I ask because I was found out I had 8 ulcers in 1992. The dr said it was caused by the advil. I would take advil on an empty stomach if I had a headache. The ulcers would flare up when I was under a lot of stress. Once I treated the ulcers and stopped taking advil - I was much better. Now when I take advil, I will only take it with food.

Not sure if it can cause heartburn, but it tore up my stomach years ago.

Glad you are feeling better. Hope you get a chance to meet up with us in May.

Kristi

 

[nurse.darcy]

Ahh, thanks folks. So good to have people here who care and understand. And it's so good to know how people can live with it. It gives a lot of hope to a guy who "never gets sick...it's just a scratch...just walk it off...it'll heal on it's own". I've already seen a dramatic improvement on the current meds, probably just due to the reduction in inflammation. The underlying stiffness and pain is still there at times, but at least it not magnified and multiplied by other things.

I forgot, I'm also taking Omeprazole (aka Prilosec) already for stomach problems. I'm supposed to see a specialist about that too, since I've had heartburn pretty much daily for the past 15 years. But I found myself more concerned about the RA and it's meds first, since it was ruining my everyday life. I think I used to take Protonix and whatever that purple pill was back in Reno, before being uninsured for 4 years.

Note: I just looked up my Omeprazole and Protonix, and in their descriptions, they both mention being used to treat exactly what my MD mentioned when he referred me to the specialist..."erosive esophagitis". Sounds icky.

Anyway, thanks again everyone for the thoughts and support.

Very good. It was the erosiveness of the meds that eventually killed my grams. She was only 67 and very much alive. I take a pepsid daily cause I have had gastric bypass and take vitamins and supplements on a daily basis and I don't want heartburn or "erosive esophagitis" or ulcers ruining my life. So far I have avoided the "dreaded" ulcers that plague people who have this surgery. Its not something the md prescribed, its just my own research. And about once a month for 5 days I am on heavy doses of ibuprofen.

 

[Floydian]

Yea, I've taken my fair share of Ibuprofen over the years. Mostly though, at least in the beginning of the heartburn problems, it was due to heavy drinking and smoking and fast food and late nights and no sleep. You know, typical irresponsible 20-something party animal lifestyle.

Sadly, quitting drinking and smoking and late nights and most fast foods seems to have only slowed the problem, not eliminated it. So I quit all of that fun stuff for my health, and my health is getting worse anyway?!?! Methinks I made a bad trade...

 

[BambiLover]

Floydian, wow! I'm so sorry! What a combination. I know RA can be a very irritating and painful thing, I'm glad they're getting the treatment underway for you!

My dad has had problems with the esophogeal lining eroding away. His, however, is due to food allergies that developed later in life.

Bless your heart, I hope things get on the upturn for you quickly!