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!! 

TONS of info....

WOW!!! I came across this website that covers just about every aspect of Sjogren's from A to Z....had to share the link! So much info to absorb all at once, especially for some very tired, Soggy eyes :)

If you know of any other helpful information, please feel free to post in the comments!!! I always welcome knowing what other Sjoggies are doing that helps with symptoms...

http://www.dry.org/fox20020816/guide.htm

My blue butterfly!

Nails

My nails won't grow. Never have really, but with each passing year, they became more and more brittle. So I started getting them done with acrylic overlays. It is nice to have pretty nails all the time! The pampering aspect of the mani/pedi is a de-stresser for me, too! I get to sit in the chair, feet soaking in aromatherapy stuff, back massage going in the chair, & some exfoliating followed by hot stone therapy on my feet & legs...

Today is the day I go to get them done again--about once every 3 weeks--and I wonder...is there going to be a time when I will need to stop having them done? I also wonder...how many other women in the nail salons are there because they are kindred Sjoggies (whether they know it or not) and their nails break at the first sign of growth like mine do?

A Beautiful Sunny Day

I live in Alabama, where there is no lack of sunshine. When I was a teenager, we used to start working on our tans this time of year because you can not live here with lily-white skin! (I think it is a written law or something) This means there is TONS of UVA/UVB exposure! And in Alabama, you can add a very high humidity level to that. For a newly diagnosed Sjoggy, this means lots & lots of sunscreen--OFTEN!

What I am trying: I got a large bottle of "Broad Spectrum" sunscreen, which I keep in the bathroom to apply after my shower--in place of the regular lotion previously used. I also have a small, refillable sunscreen in my purse--handy for re-application later, if necessary.

Today--April 10, 2013--the predicted "high" is 83 degrees! It will be a beautiful day for a walk....complete with wraparound sunglasses & gobs of sunscreen! I think the Spring tanning is definitely a thing of the past, but to put an end to the damage caused to my body--it is well worth it!!

Is This New?

I awake this morning to birds singing, sunlight beaming through the window, feeling rather well-rested, & my mouth feeling like it was super-glued shut!! Don't get me wrong....I have had a very dry mouth for many years. But now I wonder (almost daily, it seems) "Is this new? Or am I just now realizing it for what it is?" Maybe I have just come to allow myself to think of it as part of the disorder, rather than my lack of care for myself, or my growing old, or to whatever else I previously attributed every symptom. Does anyone else feel like this? So then, I lay there thinking...what can I do about it? What fixes THIS? Why did I never seem to care so much before about fixing the symptom? Is it because I didn't know it WAS a symptom? My thought processes with each aspect of this disorder are so much different than they were before....

Things I am Doing for My Eyes

So to protect my "peepers", I invested in some new 100% UVA/UVB protection sunglasses with more of a wrap-around design. I make sure to wear them whenever I am outside now. In addition to blocking the sun's damaging rays, they also keep pollen and other environmental junk out of my eyes. I also started using some baby shampoo/wash on a washcloth to clean my eyelids twice a day. And in addition to the regular eye drops that I use during the day, I have some super-strength gel eye drops (Genteal brand) to put in at bedtime. I am also running a humidifier beside the bed at night. So far, this regimen is helping to ease the burning. 

April 4, 2013

I don't think I will ever forget the day.....it was rainy & cold. It was the day of my doctor's appointment to review my lab work. I had spoken to the nurse a week earlier & already knew there were "abnormalities" that we would be discussing at this appointment.

The nurse had me come back, checked my blood pressure, weight, etc. & then took me to the exam room. The doctor came in & went over my labs with me. He had tested me for many different autoimmune diseases, as well as an ANA test, RA factor, & a specific test for rheumatoid arthritis.

The good news is that I was negative for all of the autoimmune diseases (except for one)

However:
I had a positive ANA--indicating autoimmune disease
My SSA was >8 (normal = 0-0.9)--one of the tests indicating Sjogren's
My SSB was 5.3 (normal = 0-0.9)--another test indicating Sjogren's
My RA Factor was 86.7 (normal = 0-13.9)

My doctor said all labs indicate Sjogren's Syndrome & he discussed my questions/concerns with me, told me how serious the disease can be, & gave me a referral to a rheumatologist.

My insulin was high but my fasting glucose normal, so a glucose tolerance test is scheduled as well. 

OH!!! But I found something to be very excited about....I have GREAT cholesterol!! My total was 178!! My triglycerides (drum roll please)  were 62!!!! WOOHOOO!!!!!

It Started to Sink in...Putting The Jigsaw Puzzle Together

Our family has a little joke (my kids always hated this):
A man goes to the doctor. He says,"Doctor, when I raise my arm up like this it hurts". The doctor says,"Well, don't raise your arm up like that".


The more I thought about what I had found, the more it made sense to me. I now wonder if there were signs of this throughout my life. I think of random health issues and how "the last doctor" never really investigated them. I think of things I just considered to be quirks about me, but I either adapted to them or changed something environmentally that reduced or eased the problem.


Such as--

• Greasy food has never really "agreed with me", so I limited or avoided it
• I have a hard time swallowing "dry" foods, so I use lots of sauces!!!
• Sodas made me feel uncomfortably bloated, so I stopped drinking them
• My facial skin seemed to absorb liquid makeup, leaving behind a blotchy pattern, so I have never used it, other than around my eyes
• Shaving my legs can sometimes leave them feeling like they are on FIRE, or like I was attacked by a family of chiggers (that's for us Southern girls!!). Well....I just used shaving products for sensitive skin & hoped for the best (a girl's got to do what a girl's got to do!!)
• My nails have ALWAYS been brittle & would not grow long & pretty, so I have my nails done--acrylic overlays
• Salty food seems to make my hands swell & my finger joints ache, so I limit my sodium intake considerably. I can especially see a difference when dining out--particularly if it's Mexican food!! (maybe it was the margaritas??)
• Riding on our motorcycle with the face shield raised caused my eyes to feel like they were swollen & on fire, so I kept my shield pulled down & made sure I had eye drops

Not to mention the array of lotions, oily sprays, bath oil beads, eye drops, hard candy, hair conditioners, etc....

Is any of this sounding familiar? Have you just adapted to some of the symptoms you experience?

BUT then the fatigue came....that tiredness. The energetic spirit is still there, but you just can't drag yourself to the shower to get ready to go. You make it through the work week, knowing that you WILL sleep late on Saturday, and then wake up a few hours later than normal, feeling ready to conquer the world again. So you sleep 2 hours later, wake up, & drag yourself to the coffee pot, then the couch, & there you remain until ehhh.....supper time???? :)

Please tell me that's not JUST ME?!?!?

The Basics....

The first things I wanted to know were:

*What exactly is Sjogren's Syndrome?
*What are the main symptoms?
*Do I agree that I might possibly have the symptoms?
*What are the long-term effects?

This is what I found on www.sjogrens.org:

Sjogren's Symdrome is a chronic autoimmune disease in which a person’s white blood cells attack their moisture-producing glands.

The characteristic symptoms are dry eyes and dry mouth

YES I DEFINITELY HAD THOSE!!!

Long Term Effects are best illustrated in this picture from http://www.sjogrens.org/images/stories/sjogrens_body.jpg

 

What is this thing you speak of? Sjogren's Syndrome?

So it was a day like any other day in my life....hurried, running late, drinking my coffee on the way to the next thing, still trying to wake up. I had a new patient appointment with this internal medicine doctor. I have two friends that work for this doctor and, after 13 years of feeling like a number at my last doctor's practice, it was time for a change.

I figured this would be your standard,"Yeah, you are over 40, got a few things wrong with you, no big deal, welcome to growing older" type visit. "Do this, do that, and you will be fine....see you next year, unless you get sick in between". Much to my surprise, things did not turn out to be so simple. The nurse, as well as the doctor, asked a LOT of questions. I was there for quite some time! During my exam, the doc was asking some questions, which became increasingly more specific. So I asked where he was going with all of it. He told me he was thinking possibly this thing called Sjogren's Syndrome, and asked if I had ever heard of it. When I said I had not, he told me,"Don't look it up. You will become a hypochondriac". He scheduled me for some baseline lab work, had me sign some papers requesting my previous lab work from the last doctor, and scheduled my next follow-up with him.

What did I do, you may ask???? Well, I can answer you by stating...I LOVE RESEARCH!!!!! If you bring something like this to my attention, I WILL look it up....in detail....and more detail....and more and more detail........