New member in the desert

[hikerknees]

Hi Everyone,
Ok, so I don't like to talk too much about myself as once I get going I can't stop...
Bio:  I am 53, have had a wonderful partner for 29 years, we have no children or (physically) close family and we live in New Mexico.  I am a physical therapist but really I work as a well paid playmate to a bunch of wonderful special needs children ranging from 0 to 30.  I am a practicing Buddhist and Quaker and love most things of a spiritual nature.  I am not very good with computers so am hesitant to try and navigate this site.

History with Sjogren's:
   I have had positive blood markers for Sjogren's for many years (20 or more?) and have thought nothing of it until recently, I was actually more worried about Scleroderma since I also have markers for that.  No signs of that so thank god.  Many, many trips to doctors for eye problems, stomach problems, many, many tests that showed nothing.  Since I work in medicine I know it can take time between when symptoms are felt and when they are measurable.  Frustrating as a patient!
   Things started flaring up about 2 years ago when I started a particularly stressful job with lots of travel (bad for dry eyes) and responsibilities.  So while I am new to all this and learning about meds and learning to carry eye drops, nose spray and water with me everywhere, I watch my stress and activity levels most of all.  I work in the schools and my favorite activity is hiking, so I am just leaving my hardest time of the year.  Right now I am hooked on plaquenil, zantac and little liquid containers of various drops and sprays, but I hope to reduce some dosages come spring, once things ease up at work and I can get outside more.  I see the rheumatologist in April and want to avoid more meds, but probably I'll have to go to a cardiologist with some circulatory concerns. This site is very helpful in helping me prepare my questions for the docs.

Plans and goals: 
   I hope I am realistic in my expectations and being kind to myself with my new limitations, what I read of other's experiences are much worse than mine.  However I am an outdoors person, I love to garden and hike, and all this fatigue, photophobia and achiness is pesky.  I am planning to cut back severely on my work (maybe 3-5 years?) so that should help.  A focus on environmental concerns is in my future, I hope.
   I have a lot to learn, and this looks like a great site with lots of support and information.  I wonder, for example, if I will have to move from the desert.  I still don't know what to attribute to Sjogren's and what is stress related or age related (and now what is side effects of the medications!).  The brain fog is a good example, and there are other symptoms I want to explore.  I have done a lot of adjusting of diet and exercise, so I hope to encourage and support others who are going through this.  Please forgive me though when I sound preachy, remember I work with kids all day so I can be kind of "know-it-allie".
   So far I like my rheumatologist and course of treatment, my partner is a nurse and he and I have done a lot of work on patient advocacy over the years so I am not a passive patient.  I joined this and another support site to help me understand this more, and so my guy wouldn't have to be the only one who I can unload on.  I am humbled at the stories I have been reading, so I probably won't complain too much if I can help it.

Oh, and my "ha-ha" joke is that my rheumy told me almost everyone he sees with Sjogren's gets Lupus as well, so I told him I would just stop coming to see him then.

[Joe S.]

Welcome hikerknees. Does your name indicate a Knee replacement; past, present or future? My wife is having one this spring and again this summer.

My old MD has Scleroderma. He played the tones at: http://www.chakraforce.com/Tonations.html#193. (include period in link) and notice improvement. After he retired, he has gone head first in the deep end of the electro-herbalism pool ($30,000 of equipment and training).

You may find "Spoon Theory" helpful: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I have not been able to use traditional medications so I have gone deep into CAM. Some of us have posted what we take in our signature to help others.

I sleep with a polar fleece "mumps" scarf tied over my head and it seems to help quite a bit.

[hikerknees]

Hi Joe,
No knee replacement yet, probably in my future tho...  The nickname comes from combo of my favorite activity, hiking, with what I was called in college--I worked at some apartments built for people in wheelchairs;  I am real tall and the door handles were real low so I would open them with my knees.  It seems to fit since when I hike my knees creak.

[Scottietottie]

Hi Hikerknees  

Welcome to Sjogren's world. As you will probably have gathered already - Sjogren's is a very individual disease. It's progressive - usually very slowly - but not always - and sometimes hardly at all. So - it's all very unpredictable.

You say you spend a lot of time outside. Do be careful. It's very common for Sjoggies to become very sun sensitive. Plaquenil can compound this. I used to be a sun worshipper and now I can get sunburn through a car windshield. A lot of us have to use heavy duty sunblock. cover up and wear hats and sunglasses.

Anyway - welcome. I hope you find the site useful.

take care - Scottie  

[Calli66]

Hello, and a warm welcome from me, a fellow New Mexican!

It's dry here----not a good choice for dry eyes, but what can you do? I go to a Sjogren's Support group locally---we meet every other month. But this site---Sjogren's World---has been the best support and learning experience for me.

C

[hikerknees]

Thank you Scottie for the heads up on the plaquenil and sun exposure.  I usually go out with spf 50, sunglasses, hat, the whole 9 yards, so now I will be even more careful!  Have already had a skin cancer so don't want to get more of those.  Am interested in hearing other sun lovers' tips for still getting their daily dose, and how Sjoggie's stay hydrated in the desert.

[Pisces24]

Love the name Hikerknees!!!!   
I can't use one like that for me or it would have to be something like Compuerbutt. LOL   
I bang on a computer all day for work.

[BonusMom]

Welcome aboard!