The Young and the RA

So as those who have been reading my blog regular know, I have been looking into getting surgery on my left middle finger. I went to see a surgeon at the begining of February about pursuing that possibility. After that I had an ultrasound done of my hand and then…I sat around for two months waiting for the doctor to get back to me about the next move. Oh yes, two months. And, yes, I called the office several times and left several messages. 

What is wrong with our health system that doctors feel they can ignore their patients? Now, I know this may be a staffing problem, but then what does that say about the way hospitals and doctors’ offices are run? It is rediculous. I just don’t see what is so hard about returning a phone call or setting up an appointment for a patient. It should not be this hard.

Because of this experience, I have learned a few things about trying to get in touch with doctors, and I thought I would share them with you.

• One, always get a doctors business card when you see him or her. These cards contain numbers to reach the doctor at and often an email address. Which brings me to my next point.

• Two, email your doctor directly. That is how I finally got an appointment. I sent the doctor an email, and he had his assistant pull my chart and got back to me with in the week to make an appointment. Worked much better.

• Three, try going into the office and talking to them. If they are being extremely difficult about making an appointment, go into the office and talk to them face to face. It is harder for them to ignore you if you are right there.

• Four, ask for a referral. If you feel that your doctor is never available and extremely hard to get a hold of, ask him to refer you to someone who might have more time for you.

Overall, remember to be friendly and courtious, no matter how difficult the staff is. People get on the defensive if you start yelling at them, and then they will never help you. They will be more sympathetic and helpful to your plight if you explain your problem clearly without making them feel they are to blame. I know it can be hard when you are frustrated with the office, but getting angry never helps.

That’s all the advice I have. Good luck! If you have a great/terrible story about getting pushed around by a rheumatologist’s office, email it to me at theyoungandthera@gmail.com, and I’ll put it up as the story of the month for next month! (See my STORIES tab on the right!)

Until next time,

S.P. 

Recently a basketball team in Virginia, the Richmond Spiders, held a charity event that raised $2,200 for the National Arthritis Foundation’s Virginia Chapter.

“The Spiders received a special waiver from the NCAA to play in the charity game against members of the Tuckahoe Middle School faculty. All proceeds for the event went to the Arthritis Foundation Virginia Chapter in honor of Dymond Carle, a Tuckahoe Middle School sixth grader who suffers from juvenile rheumatoid arthritis”(CSTV.com).

The event was so popular that people had to be turned away at the door, and the Spiders gave Dymond an autographed basketball, Spider gear and courtside seats to a game next winter.

I love hearing about fundraisers for RA. I feel like so many are out there for cancer, diabetes, boys and girls clubs, etc. And not that those other causes don’t deserve the money, but RA rarely gets attention. I feel like this is often because people confuse RA with arthritis and don’t realize that it is an autoimmune disease that needs funding for research just like diabetes. I push you all to set up a fundraiser for RA organizations such as the Arthritis Foundation!

Until next time,

S.P.

I’ve decided to add a new feature to my blog. Since most readers seem very interested in hearing about other’s stories, I am going to have an RA Story of the Month. For April, we have Keisha Bickel’s story of being diagnosed with RA and dealing with drugs that just wouldn’t work for her. I had her email me her story, and I am posting it exactly as she emailed it to me. These are her words straight to your screens. Enjoy! 

Until next time, 

 S.P.

P.S. If you would like to be the Story of the Month for May (or any future months),  please email me your story at theyoungandthera@gmail.com. Feel free to include pictures, emails anything you want to be included in the post!

Now for Keisha Bickel: 

My name is Keisha Bickel, 22 years old. Was diagnosed with Polyarticular Rheumatoid Arthritis and Raynaud’s Phenomenon at age 16. My Rheumatologist started me on Methotrexate, Prednisone, Folic Acid and Ranitidine. The Methotrexate and Prednisone worked for a while, but then I started getting infections and migraines. Needless to say, he had to take me off of that and try something new. That’s when he started me on Enbrel.

HUGH MISTAKE!! First injection and I was totally bedridden!!!! I awoke in the morning and was in so much pain that it’s unexplainable. My husband had to literately grab a hold of my legs and straighten them out himself!! I let the Rheumatologist know what was going on and he still kept me on it for a year!!!! The whole time, I’m using a walker, cane and/or sometimes a wheelchair.

While all of this was going on, my husband and I decide it’s time for disability because I just couldn’t do it anymore. So, now I’m on disability, at age 20.

Later on, the next thing I know…I’m having a hard time breathing. Feels like there’s something just sitting on my chest and every time I try to take a deep breath, it hurts worse! Well, my husband wound up taking me to the ER. You’ll never guess what we found out! Now I have Pleurisy (inflammation of the lining of the chest wall and lungs), also at age 20!!!!

After that year, my Rheumatologist switched my meds again. This time he put me on Humira. Yet another mistake! All that medication did to me was make me sick. Every single time I’d eat or drink anything at all, it would never stay in my system. I wound up losing 20 lbs because of that and was only on it for about a month.

Bet you can guess what happens next! Yep, and yet again, he put me on another medication, Remicade IV Infusions. Had it done once, didn’t phase me. He decides to add Methotrexate and Folic Acid with it. Well, it works a little better now. Only problem is now, I’ve been having trouble with my heart and my hormones, at age 22.

My heartbeat is irregular and apparently so is my period. So, at this present moment, I’m on a type of heart monitor to try and figure out the problem and see what the next step is and am also on the Medroxyprogesterone to fix the hormones.

If you ask me, it’s all a disaster. In the process of all of this over the last six years. My husband and I have been trying to conceive, when all along…I’m pretty sure the medications are making me a bit infertile. Six years of trying and nothing!!! We’ve even been through some fertility treatments and IUIs…you name it, we’ve tried it!

I’m just about fed up with seeing doctors and taking medications. All the while, there’s all of us out there that have to suffer from everything not working.

Personally, I’m giving my Rheumatologist this last chance on Remicade and such, then I’m doing it MY way. Going to do it all natural. Organic foods, pills, etc. It’s not right that we all have to suffer just so they can use us for guinea pigs and put chemicals and poisons in our body.

Well, I figure it this way, why not try something healthy and natural instead, WHILE being your OWN guinea pig and suffer probably less side effects, than going to get chemicals n such put directly into the veins! I’m bound and determined to take it on myself, find something ‘healthy’ that works…then hopefully spread the word and if others choose to try it and it works then that’s great!

We all just shouldn’t have to suffer anymore! Good luck to you all! May you find the miracle you need to heal!

Sincerely,

Keisha