2 Years In....

It has been 2 whole years since I was first diagnosed with Sjogren's Syndrome.....what have I learned?

There are so many things to tell! First and foremost, we are all different! You may find hundreds of others who have your same diagnosis, but each one is still an individual.  Your flares will vary, the causes may vary.  Your level of disease activity may be different than others'.  You may or may not have co-existing conditions.  What works to help you feel better may or may not work for another person. 

We experiment, we try to help each other, we find what is best for our body--just like we did before we were diagnosed.

The symptoms may ebb and flow, but the reality is, you probably had this disease LONG before anyone realized it.  Your disease did not start being what it is just out of the blue.  I could say with some certainty that you had symptoms manifesting before a doctor told you about it.

Sjogren's is a crazy disease.  You are not alone in having it.  Doctors do not, for the most part, know much about it.  There are good days and bad days.

Here is MY reality--I am still alive.  I still can make choices that will benefit me or hurt me, but they are MY choices.  I talk to others for ideas I may not have thought of and to educate those who know nothing at all about Sjogren's.  WHY?  Because until we talk about it, others will not get ANY help from doctors because no one--not even the patient--will know what their symptoms mean....

Live your life.  Do not let Sjogren's steal your life & your joy.

Pilocarpine

Today, I started Pilocarpine......OH MY!!! I haven't felt my salivary glands work like this in YEARS!!! Wow!!!! Maybe it's not a big deal for some people, but for me it was like a dried-up well had regained its connection with the ground water. All of a sudden, the flow was back!! Oh--and my eyes did not feel as though they had been lit with a match by day's end! My hope after Day 1 is that this continues! I am definitely relieved and impressed!!

My Bold Blue Butterfly!

I guess you could call it an attempt to embrace my syndrome....on April 27, 2013, I found a tattoo artist brave enough to create the above pictured work on my right thigh! It is important to me, as it is the butterfly for Bold Blue Day....primarily aimed at reducing the time it takes for diagnosis by 50% in 5 years. On one hand, I can read how this disease usually affects women aged 40+, but then I also read that diagnosis can take around 10 years. Does this make anyone (other than myself)  wonder--is this actually a disease that begins in the 30's rather than the 40's???? Personally, I can tell you I can now trace symptoms back 10 years. WHY did it take so long? Let's all work to get some recognition and possibly stop some of the suffering that so many are dealing with--not even knowing WHY!!!

The Rheumatologist

My first visit to the rheumatologist was last Wednesday, April 24, 2013. Ironically, also a rainy day in Alabama. The doctor looked over the lab work that had already been done by my "regular doc", said he thought highly of my doctor & was not going to re-run any of what had already been done. However, since my RA factor was SO high, he did want to do a few more labs to make sure there is no rheumatoid arthritis, as well as wanting to check a few other things. He said I did indeed have Sjogren's. We discussed what symptoms were bothering me the most right now, and did I think the things I was already doing were sufficient to ease them, or did I think I would like something a little stronger? He told me what he was prescribing and the most noted side effects of each, advising me to start them one at a time, one week apart. This allowed time for side effects to present themselves before starting the next one.

The first prescription on my list is Mobic (Meloxicam). It is basically a super NSAID. I have taken it now for 2 full days and it does significantly ease the aches in the joints of my hands. The worst side effect noted thus far is the being SLEEPY!!! I think I will try switching it to a night time med to see if that helps, while still providing the pain relief benefit during the day.

Second on the list is Pilocarpine....for dry eyes & mouth

Last on the list is Plaquinel. It is an anti-malarial drug which provides relief for Sjogren's symptoms (as well as other diseases) when given in small doses. It is supposed to be most helpful in the warmer months of the year, and may take up to 4 months to achieve maximum benefit.

Next visit with rheumy doc is 3 months away.....

Blood Donations....

I have O negative blood--a very desirable blood type. Blood banks and Emergency Rooms know the high value in some O negative!! We are the Universal Donors!! We can give to anyone!! So why on earth would I NOT do the best thing for everyone and donate a pint as often as they will allow me to? Well....I used to! Then the day came where things changed for me as a donor. I was donating at a blood drive--kind of a portable donation site. Then my blood stopped flowing! It was already running slowly, then next thing I knew, I had "blown a vein". I had a golf ball sized lump in my arm! This happened around the year 2003. They told me next time I donated, to go to their center, so they could see why it had happened--they would be able to pour out the bag and assess the cause. A few months later, I did just that--same thing happened. The bag was inspected and it was determined that my blood was too thick and clotted in the needle. I was told that, for any future donations, I should take aspirin beforehand. The bag could be marked and it would not be given to children or pregnant women.

It is funny how a diagnosis can make one think--"I wonder if THIS was related to THAT"....so today, I searched the internet, locating this article.....

http://www.arthritisresearchuk.org/arthritis-information/conditions/sjogrens-syndrome/diagnosis.aspx

which had this excerpt:

Blood tests – people with Sjögren’s syndrome often have high levels of antibodies in their blood. These can be measured with a blood test. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.

SO I wonder--was this my first sign, or will I think back to other things from earlier times, and determine that I have been living with Sjogren's much longer than I now know? And I suppose you may ask...well what difference does it make? This is the difference....we need to make sure this syndrome is detected sooner! We need to know what we can do to prevent some of the problems which arise over time. Without detection and diagnosis, we can't possibly get any help!!

Biotene

Trying this for dry mouth relief....

 

So after a week or so of using these, I would say they work fairly well. I think I like the spray and the toothpaste better than the gum. The spray gives a pretty quick relief, but I think maybe if you can hold it in your mouth for a little while, it it more effective. Personally for me--the gum just doesn't last very long. 

Getting Connected

I have done two things to get connected....

** I became a member of the Sjogren's Syndrome Foundation http://www.sjogrens.org/.

Membership entitles you to:

• Discounts to SSF's online store
• Read the current month's issue of The Moisture Seekers online
• Access to The Moisture Seekers archives
• Brochures and Patient Fact Sheets
• Ability to search for specific information about Sjogren's
• Access to listing of products recommended for Sjogren's patients

** I located a support group nearest to me and connected with them, even though it will mostly be by email. I have communication about Sjogren's from someone who is about an hours' drive from me. It helps me to not feel so disconnected.


Do what you can to connect with others who are walking through the same place in life. Learn together what works and what doesn't. Share the good times as well as the not so good ones. Don't ever think you are entirely on your own!!