Wednesday, February 29, 2012


Awesome Prius power button image found here, on Priuschat

Yesterday was a good day.

Correction: A GREAT day.

I went to Mass, went shopping, had lunch with Terese, and treated  Goldie to a brand spankin' new windshield.

Today, I'm paying the price, but ahhh.

What fun it was to get out of the house and zip around with a bit of energy. It was worth every minute spent resting up today with my trusty nap buddies Maggie and Lulu.

As long as I'm tucked in bed with my laptop on my knees and my goggies nestled as close to me as they possibly can manage, I'm going to try to answer a few questions mentioned in previous comments and emails.

- How do you manage your pain? Have you taken Voltaren?

First, I have not taken Voltaren, a prescription non steroidal anti inflammatory drug. However, I am fortunate that pain is not my biggest issue with autoimmune disease. I do have some pain from my psoriatic arthritis in my fingers, take occasional Tylenol for this, and I have a paraffin bath that is large enough to dip my hands into which seems to ease some of the pain. Plaquenil has been somewhat effective in  diminishing some of my general body aches and malaise that were really problematic early on in my diagnosis. I have had pain in the bursa of my hips, but Dr. Young Guy's latest steroid injection into the connective tissue around the joint has helped remarkably. He has said that he can continue to inject this area every 4 -- 6 months or so if it is needed, since he is not actually injecting the drug directly into the actual joint.

Perhaps others can jump in here with more pain relief measures?

- Can you recommend a good rheumatologist?

I really, really, wish that I could share my doctor's name and location with y'all. But he has asked me specifically not to do that, so I must honor his request, and I'm sure you understand.

That being said, I do know that Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center may be one of several good starting points if possible, for those in the United States. This from their website:

Johns Hopkins Jerome L. Greene Sjögren’s Syndrome Center brings together the expertise of:

  • rheumatologists
  • neurologists
  • ophthalmologists
  • dentists/oral surgeons
  • gynecologists
  • otolaryngologists
The clinical program is also coupled with clinical and basic science research in the departments of RheumatologyNeurology, Gynecology, Otolaryngology, and Ophthalmology at the Johns Hopkins Medical Institutions.

Our Goals and Philosophy

The Jerome L. Greene Sjogren’s Syndrome Center is multidisciplinary, drawing broad expertise from multiple specialties to provide the best care to patients with this disease. The accumulated wisdom of seeing literally hundreds of patients with Sjogren’s syndrome is wonderful for individual patients, as well as for scholarship and the development of knowledge in the entire field.
The  overall goal of the Center  is to provide outstanding clinical care to patients whilst facilitating research and scholarship in this disease. The Center is structured to serve these two complementary goals: 1) the diagnosis and management of Sjögren’s syndrome in a comprehensive multidisciplinary setting, and 2) the systematic collection of data and biological samples through longitudinal care of patients attending the Sjögren’s Center, using an approved and pre-established research protocol.

I have not been seen at this Center, but am intrigued at it's concept of integrating all types of health care providers for it's Sjs patients.

- Where do you live and do you lead a support group?

I live near Portland, Oregon. I do not lead a support group, although I have considered it on occasion. As far as I know, there is not a support group in my area. But here's the problem, and I'm sure that y'all can understand: As much as I would love to have the energy to organize and conduct a successful support group, the disease saps much of that needed energy. And isn't that just a vicious cycle? We need to get together, to support each other, to learn from each other.......but there are days when we can scarcely get ourselves dressed, much less prepare for and organize and get dressed and drive to and interact with a support group.


If there are sjoggies in this area who would be interested in adopting this project, I would be happy to assist and have contact information for support groups sponsored by the  Sjogren's Syndrome Foundation, who provides educational materials for it's support group leaders.

Just a hint hint hint.

- Don't you think Pinky needs some bunny slippers out there in the cold?

Yes. He probably does. Although this would be difficult since he really has no feet - just a metal circle attached to his poor little legs. But perhaps this can be conquered. I'll put John on that right away....


ShEiLa said...

Thank you for putting the whole Voltaren question out there... pain management and such. I did read yesterday that there is a Voltaren Gel (I seem to remember my Rheumy mentioning it) and the reviews from patients sounded wonderful. I may need some of that on hand for when I am not doing well... like the last two days.

Thankfully today feels better... knock on wood. I did that earlier when on the phone with my hubby and both our cat and dog ran to the front door... *Ü*

I am totally in favor of this online system of support. Some days I just can't get out of my jammies let alone get in the car and go anywhere. I love that you Miss Julia are so willing to help us when you can... and that it can be done from home.


Miki said...

I have have joint pain in my hands and feet, sometimes in my knees as well and I LOVE MY VOLTAREN GEL!

I only use it on the painful days as I also take Etodolac and Plaquenil to help with fatigue and joint pain.

Think of Voltaren gel as a boost to get thru the harder days.

Just food for thought.