Have I entered the Sahara Desert or is it maybe Sjogren's Syndrome (some adult content)

First lets take a moment to thank all the Drs with the hard to spell and even harder to pronounce names for naming mystery syndromes and diseases after themselves right. Sjogren's (show grins) is one of those syndromes.

Sjogren's Syndrome is often also diagnosed as Secondary Sjogren's Syndrome, there is no difference between the two at all, just the later of the two means that it is diagnosed along with a different disease, like Rheumatoid Arthritis or Lupus. There are millions of people with Sjogren's Syndrome, 90% of them are women. Most people are diagnosed in their late 40's, but I was lucky and got it in my early to mid 30's. Sjogren's Syndrome is an autoimmune disease that causes your body to attack it's own cells,  mostly causing dryness issues from degeneration of the mucus-secreting glands, sometimes it can cause damage to internal organs (ie lungs, liver, kidneys etc).

The symptoms of Sjogren's Syndrome

• Eye pain and redness (the eyes feel dry and sandy)
• Dry mouth
• Vaginal dryness
• Fatigue
• Joint pain and stiffness
• Muscle aches
• Dry, cracked tongue
• Enlarged lymph glands

The dryness is not a small annoyance...if not taken care of dry eyes can cause eye infections...dry mouth causes more cavities, periodontal disease and infections...dry throat and swollen salivary glands can cause infections and difficulties with swallowing.

My rheumatologist was not the Dr who first suggested I may have Sjogren's, it was actually my Dentist who noticed some damage from dry mouth issues, severe receding gums or perioditis. I need to see a specialist called a Periodontist. Next it was my eye Dr who said my eyes were dry and I would need to start using eye drops. Then I got the official diagnoses from my Rheumatologist, but it never really felt important like oh yes that's Sjogren's it's common with RA. OK well what do I do, so through my own research and trial and error I am going to list specific products that have really helped me with my Sjogren's. These may not be what work best for everyone, but I feel these are a good starting ground.

Dry Eyes: systane eye drops, I also rarely use eye makeup as that can be drying.

Dry Mouth: Biotene mouth wash and mouth spray, I recommend getting both of these as you won't always be around your house and the spray is small enough to carry in a purse and easy to use. Other helpful things are hard candies, popsicles, and small sips of water often (sugar free candy and popsicles are best as we are more prone to cavities). Avoid caffeinated products they make it worse.

Dry Skin: Aveno lotion, for a razor I use schick intuition it has the shaving cream and lotion
surrounding like a deodorant head (also helpful for people with RA just takes out some extra steps and easy grip on handle), then after showering I usually try to air dry if not I blot never rub, this helps keep your skin lubricated and protects your skin from the damage rubbing can cause, dry skin from Sjogren's is more sensitive and this damage happens often without us feeling it. Then I use a spray on lotion I personally like Cantu shea butter, great coverage and no rubbing in with our sore hands. For face I use oil of olay, I used to use clinique which I also feel is a good one, but they changed the one I used to a gel and I just didn't like the feel as much.

Vaginal Dryness: Sensitive Adult Topic: I should have said this before, but I am an extremely sensitive fair skinned redhead. My best advice for this is have your partner spend more time with foreplay to get you really ready without pain. If you are dry it will hurt both of you. I mean who wouldn't like more attention and now you have a medical reason. If you need something more look for a water based/ water soluble lubricant. It is a very personal choice on where you buy the lubricant you choose and there are so many locations to choose from also so I'll leave that choice up to you.

I hope these can help someone else with Sjogren's. As always thank you for stopping by, I know how precious everyones time is and it means a lot that you would spend some of it here.

Can you hear me now?

Do you feel like you have a hard time hearing? Find yourself unable to hear people around you in a crowded room? Feel like if you could just turn down the volume on background noise you would be ok? How about clogged ears like when you have a cold, but you don't have a cold?

This is actually an often complained about problem with Rheumatoid Arthritis, but no one seems to have the answers. Studies have been done but most have come up inconclusive, often blaming medications not the disease process. 

I'll first let The American Speech-Language-Hearing Association (asha) explain how we hear.  

The ear can be divided into three parts leading up to the brain – the outer ear, middle ear and the inner ear.

• The outer ear consists of the ear canal and eardrum. Sound travels down the ear canal, striking the eardrum and causing it to move or vibrate.
• The middle ear is a space behind the eardrum that contains three small bones called ossicles. This chain of tiny bones is connected to the eardrum at one end and to an opening to the inner ear at the other end. Vibrations from the eardrum cause the ossicles to vibrate which, in turn, creates movement of the fluid in the inner ear.
• Movement of the fluid in the inner ear, or cochlea, causes changes in tiny structures called hair cells. This movement of the hair cells sends electric signals from the inner ear up the auditory nerve (also known as the hearing nerve) to the brain.

The brain then interprets these electrical signals as sound.

- See more at: http://www.asha.org/public/hearing/How-We-Hear/#sthash.9xITBfSz.dpuf

I went to see a hearing specialist to see what was going on with my hearing, I'll note I was NOT in a flare during the visit. What she realized was that certain parts inside my ears were loose or a bit too free moving, which is not good for the hearing process. There are three tiny bones in our ears that are all connected to other parts of the ear to help sound travel through vibrations, there is also a lot of soft tissue in our ears. As we know RA loves to attack both bones and soft tissue (among other things). It's as if the ear drum and the ossicles (three bones in the ear) are hyperextending, which is common in other joints in my body. 

Unfortunately there does not seem to be anything that can be done to stop this from happening. So if you see me driving with my stereo turned up loud, it's because I need it loud to hear it, or Lynard Skynard told me to turn it up (Sweet Home Alabama for those who didn't catch that) 

If you are personally having hearing problems I suggest you go see an audiologist. 

I would like to thank you all again for stopping by, if you enjoyed remember the best compliment is sharing with friends. 

Remicade Oh Remicade

Wow sorry I didn't realize how long it had been since I blogged! Why's that you ask? I have been given my life back!
Yes remicade is working for me. This is the best biologic I have ever been on. It kicked in faster and has worked better than any biologic I have been on before.
So forgive me for not posting, but I have been busy living life.
While I still have to watch to not overdue things I can actually do things. I am always a positive person and put a very positive spin on things, but the year I was on actemra was a really rough one. On a regular day I was lucky if I could make it from my bed to the couch to at least sit with the family. I also gained back all the weight I had lost previously, my cholesterol was rapidly increasing and I just felt like a blob. So that's all over now so lets forget about it!
This summer alone I have drove through 2 states 4 times, we went to DISNEYLAND!!! My oldest got married! I was able to participate in all of this!
So things have been good. I just wanted to do a quick post on why I haven't been around and will be back soon with more informative posts again.
Thank you all again for stopping by.