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.

The innocence and truth of a child

It's no secret I love kids. I think kids are amazing. I love how their minds work and want to absorb everything around them. They are never afraid to ask if there is something they don't know. They are naturally curious.

I think that we don't loose that curious side of ourselves, but what does happen is we become somehow afraid to ask others about things we don't understand. Is it because we are afraid we will be mocked or are we afraid of asking something that will make another uncomfortable? I am not sure why we no longer ask the questions to feed our curiosity.

I actually miss that. I think we are all missing out on infinite learning,  knowledge beyond what we ever thought we could obtain. I think that people could learn a lot more about others if we still asked more questions.

Most people don't know or understand RA but when you tell them you have rheumatoid arthritis they simply answer oh my grandma had arthritis, or they have arthritis in their knee and just don't think to ask more questions.

I love educating people on what RA is, I wish more people would feel comfortable asking. I think I will try to come up with some phrasing that will put people at ease and know that asking more questions is welcome, even wanted.

I know so many people want others to just understand about RA and what it is and what it does, but if we don't take the time to educate people how are they supposed to learn?.

If there are ever any questions you have about RA please feel free to ask them. Thanks again for stopping by.

Look out trapped wild animal...

I'm feeling like a trapped or caged wild animal! The pain is really not that bad, but the fact that it's my dominant arm is driving me crazy! 

I have shoulder and elbow tendonitis. Tendonitis is inflammation of the tendon. Tendonitis is common with Rheumatoid arthritis because RA is swelling of the joints and surrounding tissues as well as organs. I have had tendonitis before, but this is my first experience with shoulder tendonitis. The fact that it is in my dormant arm is creating comical situations. I'm glad to be amusing my family and friends, but I'm ready for this to end. 

I have a suggestion for all able bodied persons who read this, take your dominant arm and strap it down to your side, don't use it for a few hours.....now imagine that for three months instead. That's where I am sitting now. I knit, I have knitting projects that are on a timeline. I have to finish a wedding sweater for my stepdaughter in the next few weeks. I am getting it done, but the progress is much slower than I would like. 

All in all I'm still here, I'm actually don't pretty well. I haven't been online or able to do a blog for a while because my dormant arm is trapped, and what use of it I do get I need for other things right now. 

I hope everyone is doing well, thanks again for stopping by. 

Road trips

I used to love road trips. I love driving, I love being passenger and watching the scenery, picture dog hanging head out window and your visual is pretty close to how excited I get about the simplest things going by. I find beauty in everything. 

Road trips with Rheumatoid Arthritis are a whole different story. I have to plan ahead and really think out every little step. Then if it's not just a day trip there is a whole extra set of things I have to think through. 

I'll start with some helpful hints I have found for just a road trip. I'll write this from being a passenger. I believe I mentioned my new friend the boppy pillow (a horseshoe shaped baby/breast feeding pillow). If you have one take it with you for the road trip, it will help cushion joints during your ride, including hands, wrists, shoulders, elbows, I even feel it helps my ribs. Mine was given to me by a friend, but I would gladly purchase one now that I know how much help it is. 

Make sure to pack any meds you will need. I always pack a few extra days worth just to be safe. In a car it is fine to put them in a weekly pill container or anything else that is easy for you, however if you are flying I always suggest keeping them in their original containers. 

Another thing I pack is a ziplock bag with antibacterial wipes. These are handy for rest stops that only use hand dryers, wiping down stuff in a hotel, or anything else you think you need to de-germ so you stay healthy. 

I also pack a few empty ziplock baggies, these can be filled with ice for free from any gas station or convenience store you stop at to ice any joints you need to. Can also be used as garbage bags if needed. 

The easiest thing to do to help prevent extra pain later is try to move as much as you can, roll your wrists, ankles and neck,..shrug your shoulders...bend and straighten you knees, toes, fingers and elbows. Make stops and get out and walk a bit. I find scenic viewpoints are great for this and as a bonus you get a view of something beautiful. 

Also get a rolling bag, don't try to carry to much at once, ask for help or make extra trips. You don't want to injure yourself when your on a trip. We hurt enough on a regular basis right. 

These are just a few simple ideas to try to make your next road trip a little more enjoyable and a little less painful. I hope you find these helpful. 

As always thanks for stopping by. 

Blogging is hard, blogging when you are chronically ill is harder.

There is this trend that is happening to bloggers and people who host forums on facebook that makes me sad. These people are getting rude comments and messages. Let me just say blogging is hard. Blogging is opening up who you really are and sharing things that most of us keep private. When you have a chronic illness and chronic pain there are so many other things that get in the way of blogging. Drs appointments, treatments, just not feeling up to it, too much pain and many many more reasons. This is why there are spurts of no blogs for ages from me and then bam a few in a row. My disease is not under control.

Most people seek these types of blogs and forums because they have the same diseases, yet they get angry and send hate mail to the hosts when they are not active. It makes me mad and sad. Treat these people with respect they are taking their time away from their friends and family to try to help you. Please see all that they give and thank them. If you don't appreciate what they are trying to do then don't like the page don't follow the blog it's much easier than a time consuming mean message takes to send.

I am thankful this is not my situation. I have great followers and appreciate every single one you so let me again say Thank you.
On a side note I have many click like on facebook but not click follow on my blog page, if you get a chance please follow me on my blog page too it makes me happy.

That's all I am just supporting some fellow chronically awesome people that are trying hard and in my opinion doing a great job. Thank you for all that you do I appreciate you!

Have a great day everyone, and as always thank you for stopping by. 

Oh my I had this in drafts instead of posting, so this was from April, but is still an ongoing problem so I am posting now.