Comments on: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”

By: LisaCalhoun

LisaCalhoun — Tue, 24 Jan 2012 14:29:28 +0000

I have been diagnosed with RA now for over 5 years, however this horrible disease has been within me for much longer. My hands are NOT deformed, my RA is attacking my joints, yes. But you can not SEE the attack from the outside! I am now scheduled for 4 more surgeries on both knees and both elbows. I am 48 years old! I have to have my nerves moved because they are inflamed and pinched in all 4 limbs now and my nerves are starting to deteriorate. You can’t SEE that but I can tell you that I can FEEL that! There is such a need for education within the public that it isn’t funny. I am soooo tired of hearing, oh you have arthritis, so do I. We have got to get this disease re-named….soon! I do not feel that anyone except unfortunately those that share my disease. I am so thankful everyday for your web site. Thank you! People hear the word arthritis and then they quit listening because they figure they already know what THAT is!

By: Chelsea

Chelsea — Wed, 27 Jul 2011 07:59:37 +0000

Saying a prayer for you Vivian!
Hugs,
Chelsea

By: VIVIANNE

VIVIANNE — Mon, 25 Jul 2011 23:13:34 +0000

HI, I’VE HAD RA SINCE I WAS 23 AM NOW 57. IT’S HAD A LOT OF YEARS TO DO A LOT OF DAMAGE. WHEN IT STARTED O HAD OVERALL PAIN, FELT SICK, VERY HIGH FEVERS. THEN THE MORE GENERALIZED MORNING STIFFNESS IN SPECIFIC JOINTS MOSTLY HANDS AND FEET. A FEW YEARS LATER I THINK ABOUT 3, SEVERE DRY EYES, EXTREME BLOODY URINE WITH PROTEIN. THROUGHOUT THE YEARS HAND AND FOOT SURGERIES. THE MOST LIFE THREATENING I THINK IS THE ATLANTOATLAS SUBLUXATION. FOR THAT I HAVE HAD WHOLE CERVICAL FUSION WITH PLATES AND SCREWS FROM OCCIPITAL TO C6. THAT HAS BEEN THE MOST LIFE CHANGING. I NOW TAKE A LOT OF PAIN MEDICATION FOR THIS. IPROBABLY, THE NEXT MOST SERIOS THING I’VE DEALT WITH WAS INFECTION IN THE BONES FROM KNEE REPLACEMENT. I HAD A CENTRAL LINE FOR 4 MONTHS WITH IV ANTIBIOTICS AND THANK GOD I HEALED. I DO GET INFECTIONS ALMOST WITH EVERYTHING. THE LAST SURGERY WAS TRYING TO SCREW AND PLATE MY LEG BONE BACK INTO THE ANKLE. THE BONE WAS COMPLETELY DISLOCATED AND THE DANGER WAS IT BREAKING THROUGH. THE SERGERY WAS SOMEWHAT SUCCESSFUL BUT I WEAR A BRACE ALL THE TIME. IF IT GETS WORSE THEY SAID I WILL HAVE TO GET AN AMPUTATION FROM THE KNEE DOWN. I’M STILL A HAPPY PERSON AND I AM GRATEFUL I KNOW THINGS COULD BE WORSE. BUT I DO THINK THIS DESEASE DESERVES MORE RESPECT THAN IT GETS. IT HAS AFFECTED ALMOST EVERY ONE OF MY ORGANS; EYES, SKIN, LUNGS, KIDNEYS AND JOINTS. GOOD LUCK TO THOSE WHO ARE FIGHTING THIS DESEASE ON A DAILY BASIS STAY STRONG AND DON’T GIVE IN.

By: Kelly Young

Kelly Young — Wed, 02 Mar 2011 22:07:07 +0000

Suzanne, Your wishes is the same wishes of every RA patient i know – these are the important things that we’d hope to change about how RA is treated. You have summed it up well.

I’m glad the blog helps some. Take care of yourself the bet you can.

By: suzanne skinner

suzanne skinner — Wed, 02 Mar 2011 21:39:30 +0000

This disease comes on the heels of Type 1 diabetes for 30 years,and Severe Coronary artery disease. It first started when I would awake and my hands would be all curled up and I could not uncurl them with out help. Then trigger finger. Then the right hand, then the left. Add to that cheiropathy(frozen shoulder syndrome) and I am one big mess. I am terrified on all levels. The medications,the exhaustion, the pain and what will I be like in two years. I am now 59 years old. My RA doctor acts like it is no big deal and so does my family. It is just “getting old mom”, I am told.
This blog is sure helpful.
But what I have experienced is ” assembly line medicine” at it’s finest. You mentioned you kept telling the doctors, but they would not listen. For some reason I have found that doctors do not want their patients telling them what is wrong. Like WE do not know our own bodies as well as they do.
If we could only get real honest doctors with real time knowledge to partner with us to assist in managing this disease instead of fighting us or dosing us with meds that make us ill.
I have put off for six weeks, taking the prescribed methrotrexate, out of fear of the side affects. I want to spend time with my grandchildren without vomiting all day or sleeping all day.
I want to be able to leave my own home without the fear of getting some kind of infection.
I want my RA doctor to take me seriously.
Sorry to ramble on. I am not coping with having more diseases or finding new symptoms of RA. Or “watch out” for this or that.

By: Kelly Young

Kelly Young — Sun, 23 Jan 2011 22:08:13 +0000

Thank you for sharing your story Susan. If you do want to learn more about reasons for rheumatoid deaths, there is a Tag that you can click on to see a list of posts. Click on the Tags List to see it. One reason I’m writing about that is to find ways we can fight back & try to change this. So far, the high mortality rate of RA has not improved with other mortality rates, but Mayo Clinic doctors are studying to find out why. Very imporant.

By: Susan Murphy

Susan Murphy — Sun, 23 Jan 2011 14:44:38 +0000

I’ve had RA for over 30 years now and mine too flared after I gave birth. Over the years I’ve had many of the complications related to the disease. I feel I should knock on wood when I say, right now, it’s under control with the use of Arava and minocycline. Over the years, I’ve read obituaries in the newspaper which had the phrase “complications of rheumatoid arthritis” and I always wondered what that was but also didn’t want to know. Three years ago I had an opportunity to learn about one of them when I was diagnosed with breast cancer. I was seeing an array of doctors but the one I depended on most was my rheumatologist (and I have a great one). I asked her what I should do. Normally in my situation, they would have done a lumpectomy and radiation. She said she thought I should have a masectomy and chemo. She said to have radiation so close to my heart–knowing that RA can effect the tissue around the heart and lungs–would be risky. She also told me that RA patients generally respond well to chemo and it puts their RA in remission for awhile. I took her advice and it saved me a lot of anguish. When the surgery was over, the doctors agreed that with no cancer in the lymph nodes or the breast I wouldn’t need chemo. I’m new to your website but I thank you for getting information out to people.

By: Kelly Young

Kelly Young — Sat, 10 Apr 2010 16:14:12 +0000

Pamela, there’s no way to tell you how encouraging you are to me. I’ll just tell you it is always needed & appreciated; never wasted. I hate when there is concrete in the veins – but I love the word picture.

By: Pamela Montgomery

Pamela Montgomery — Sat, 10 Apr 2010 16:03:50 +0000

I love the analogy – It is similar to one I use to explain the fatigue to my husband – I tell him it is like someone poured concrete through my veins!

I hope you are doing well today Kelly!

Thank you as always!

By: Kelly Young

Kelly Young — Wed, 31 Mar 2010 02:02:40 +0000

Pamela, I’m so glad you came thru that ok. It sounds kind of scary. You must have been thrilled to talk to that dr whose wife has RA – the next best thing to a dr who’s had RA. I’m pretty down tonight too since I can’t move. Feels like I’m in cement up to my eyballs. Ouch. :pain: