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.

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. 

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. 

A smart body

To me a smart body is one who tells your brain when there is pain. Your body tells your brain that there is pain, which your brain takes and sends to you as 'ouch that hurts', which a smart person listens to and says I am in pain I need to seek medical attention.

Then there is my body. Hmm nothing going on here, keep on about your day with this broken bone, or this scalding burn happening.

Basically pain receptors are important. Please stop telling people with a low pain tolerance they are wimps, honestly their bodies are smart and know when to tell the person attached to them to let go of a hot object etc. My body is on constant vacation or something.

When I was a kid I broke my wrist. My high pain tolerance did tell me this hurts a bit. The tomboy tough kid in me told me to suck it up it's just a sprain. I played volleyball on that wrist, amongst many other things, for a week before my volleyball coach came to me and said "you are still babying that wrist when you serve maybe it's time to have it looked at". So I tell my Mum who takes me in and instantly feels like the worst child abuser ever because she let me go a week with a broken wrist without having it checked. Totally not my Mum's fault, I just have a high pain tolerance that paired with my stubborn side tells me I am fine and just ignore any signals my body sends and suck it up and act cool. OK side note I am really not cool, nor have I ever been. I mean come on I am a fair skinned freckle faced red head, in my school days that equaled kid to tease...not cool kid. As an adult my fair skin and red hair are envied so I'm good with it.

Stubborn me plus high pain tolerance me were working really well together one day when I had my lovely cast on my arm. I was making mac and cheese. Yep all by myself because I could. Now in all fairness you should know my Mum was home along with my best friend. Anyways I go to pour the boiling water through the strainer, again to be fair there were offers I believe from both to help me, my response "no I can do this myself"...I believe this may have been simultaneously done as the boiling water was being poured onto my cast, but to be fair to myself there may have been a few seconds in between.

Here is another thing to know about me I am obedient, the Dr told me not to get my cast wet I would do everything in my power to not get my cast wet. So of course the first thing in my mind is OM I just got my cast wet.

I did not feel pain. I felt pure panic. I got my cast wet.

So I am just standing there yelling MY CAST MY CAST. My smart mother wants to add more water to my cast, something about cooling burns, this is complete nonsense to me as my only thought is my cast is wet we must dry it. Now I have no recollection of who won that battle, I do have good scars  to remind me of the burns through my cast. I do remember the smell of the blistering skin, and seeing some blisters peeking out from under the cast. Signs that maybe I won, but I do know my Mum was a stern and stubborn woman so I'm sure the outcome was in her favor.

Now I could be a smart person and I tell you I wizened with age, but who am I kidding most of you know me I have only widened with age. Last summer I took my pup and me on a walk, it was a beautiful sunny warm day. Smart people know sun= very hot asphalt, people of the NW don't know sun...we take what we can get. I hate shoes; this is a very important piece to this story. So I am walking barefoot on hot asphalt and blistering my feet, but my dumb body is telling me nothing. So I keep walking. Now I should mention my Pup loves walking like the curb is a high wire, but this day he was walking on everyones grass, so pup was fine...no pups were hurt in the making of this story. Well I get home and realize somethings off with my feet. I look down to see blisters forming. Thankfully wise Mum taught me to cool a burn, and as there is no cast on my feet so I am good to soak them.

So to me a smart body tells me when there is pain. Your body feels pain for a reason. I envy smart bodies that tell the brain when there is pain....pain= danger which tells you stop doing what you are doing stupid.

There's a bit more about me for those who didn't know. Telling you all how silly I can be is hard.

Thanks for stopping by. Please if you liked it share it with your friends.

How do you know your pain is beyond RA

When you have a chronic pain disease like Rheumatoid Arthritis how do you know that the pain you are feeling is not "just RA", not that just RA is something to take lightly.  I have said before that I have a high pain tolerance. I think a smart body feels pain, ok feels an adequate amount of pain based on the severity of the cause....e.g. a broken bone should alert your brain to tell you this is painful something is wrong. There is a story behind this scenario, it is a true story I'll save for another post.

Anyways how do you know if your pain is beyond RA? I have pains that come up that are new pains, but often I figure oh a new joint has joined the RA symphony. (I feel pretty terms help me cope LOL)
There are times where I have this self debate of is this new pain RA or something else? Is this worth seeing my Dr about or will they just tell me it's RA and make me feel as though I have wasted their time?  When is my next Dr appointment? Can I wait until then and just bring it up at my regular appointment?

My left shoulder has been giving me a lot of pain which in my mind I know is beyond my normal. I have noticed I am babying it and not moving it through it's full range of motion, which raises other questions. Can I really not move it any further or are my pain signals really kicking in and telling it not to move anymore to prevent further damage? The fact that I am asking myself these questions is enough to know beyond a doubt I need this looked at. The fact that I do not have a smart body (see first paragraph) tells me a regular person would have went in a couple days after the pain first occurred. The fact that I am a month out and still debating this should tell me that I need to go in now.

So guess what I have decided to do....yep my regularly scheduled appointment is only three weeks out so I will wait and tell my Dr then. I have looked into Dr google and it says it's cancer so really I am good to wait right!? Totally kidding, well sort of we all know how often google says it's cancer. I really have researched this and have found the fixes are torture and prefer to wait. Totally not kidding here, but the first step they recommend is rest and ice, which I haven't done yet so I will start there and see what happens. If I don't see an improvement I will make an earlier appointment.

As a general note as to how to know if your pain is beyond RA...Is this pain a new pain? Is it in a joint? Does the pain demand attention over everything else? I feel that if it's a new pain it's worth telling your Dr. If the pain is not in your joint it is probably not a new joint joining the RA symphony, but either yes or no to this question is worth telling your Dr. If the pain demands attention over everything else again tell your Dr, if you feel it's urgent seek help now. Any pain is worth bringing up to your Dr, any symptom is worth bringing up to your Dr. To me the only choice is do you wait for a scheduled appointment or go in sooner. Please always listen to your body.

*Side note I do not recommend this action to anyone else. Please be smart and listen to your body know that every body is a smart body and is alerting you to a problem. Listen to your body and seek medical help. Remember I am not a Dr. This is not a medical advice blog, always talk to your Dr.

I am sure I could write a book on this subject, so I will stop here so I don't lose your attention.
Thanks again for stopping by.

Archery

Archery is something I enjoyed doing as a kid. My dad and I would go out in the yard and shoot at a large hay bale and I did some archery in girl scouts, so not a pro just a fun hobby I could share with my dad. Recently my Hubby and my girls have been taking some archery classes, I was unable to join them because my Rheumatoid Arthritis has been so active. My oldest daughter just turned 18 and for her birthday we went to the archery range. I decided to see if I could use her lighter bow and shoot from my wheelchair.

The range was empty except for us and one other guy, who happened to also be in a wheelchair. Turns out he has been doing archery since he was a young child, he has cerebral palsy and believe it or not Rheumatoid Arthritis. I had the best teacher I could have there and available to help me alone, like a private lesson. He was giving me great pointers and telling me to not get frustrated as it was like having to learn the sport all over again because everything is so different sitting in a chair. He happens to teach archery too and often has the higher skilled archers sit on a stool because it is more difficult to do.

I got some great pointers from him and was able to hit the target several times. We had a great time, we didn't stay long as we had a full day of birthday fun, which was good as I think I would have pushed myself too much because I was enjoying it. The next day I did have some extra pain and swelling, but after doing so much for her special day it was all worth it. I think I will be going more often as it will be a fun family sport and will help keep some of my joints moving and build muscles to help protect joints too.

There are always still things I can do, sometimes I just have to learn a new way to do it. To get my pain pills I have to fill out this form on all the things I can no longer do because of pain and how it affects my quality of life and enjoyment of life. Honestly I don't think about it that way, why would I want to focus on what I can no longer do. That form is depressing and I usually fill it out on auto pilot, but really why do we have to focus on the negative. I love my life...I have a wonderful family my life is filled with love and laughter, we do things together and have a lot of fun doing them. Even if we are just at home watching movies together because my RA is active and I can't do as much, we still have a great time. Pain or Rheumatoid Arthritis do not affect my enjoyment of life because I refuse to let it. I will always enjoy my life and find quality in it!

Thank you again for stopping by. Remember the best compliment you can give me is to share my blog with your friends.

Changes

Time for a change. Well Actemra was not my drug, thankfully my Dr agrees. My blood tests have not been improving and actemra was increasing my cholesterol levels, so done with that.

Changes...now I will be starting remicade. I have high hopes for remicade. I am going into this with only positive thoughts and will not be reading up on it or learning about any of the side effects. I am sure this may seem silly and superstitious but with only a handful of options left I am ready to start carrying a 4 leaf clover and a rabbits foot or any other good luck charm you think will help.

The only reason I have not wanted to try remicade before now is the infusion time. As I have said before my infusion room sucks and has no art, no decor, uncomfortable seats, and no family members allowed in the room. Remicade takes at the minimum 2 hours to infuse the first appt will be more like 3.

Like I said I am going into this one with high hopes, positive energy, and many prayers. This will be the right medication for me, it will work longer and better than any others have so far. I do like that you start at every 8 weeks instead of monthly, but this can be increased if needed.

Right now I still haven't been able to take any of my medications in 3 weeks because I was sick. So I missed an infusion and 3 shots. I have found the positive in this forced break...I am getting a tattoo tomorrow. My Dr said no tattoos while I am on the chemos so now I am off I'm taking advantage. I can't wait I have been wanting another one for a long time now so I am more than ready.

Well a short blog for now. Without having any meds my hands aren't liking typing much.
I hope everyone is having a great day. Thank you for stopping by my blog.

Knitting

I knit a lot. I learned as a child from my step grandmother, but only knew the knit stitch and I didn't do it for very long. I was very active and preferred dancing, mt biking, hiking and cross country skiing to sitting and knitting. I was always moving, I lived in the perfect area for that lifestyle too.

Well now that I have had to set aside most of those activities, ok all of them. I find sitting and knitting fits my life well now. I won't say it's easy or that it's not painful because my hands are definitely affected by my RA. I do find that it keeps my joints moving. 

A friend of mine taught me or retaught me how to knit, she taught me several others stitches than just knit. This helped me expand a lot. I have also used youtube to fill in some areas, there are some amazing learn to knit videos out there. 

I am the same way with knitting as I am with everything else in life, I over-do it all the time. I knit for too long causing more swelling and pain. If I were to just do a small amount at a time I do think it could be very therapeutic for my hands. 

I have found some things that help me with my knitting. The first is great needles. I find the metal ones get cold to easily and are painful to my hands when cold so those were a definite no for me. I discovered the Denise needle set, they are plastic and work great for me the yarn just glides over them. 

The second thing is a more recent find. A friend had suggested a while back that maybe a boppy pillow would help my shoulders sit more naturally while knitting. She was right, it has been an amazing help. For those of you who don't know what a boppy pillow is...it's a horse shoe shaped pillow that is used for babies. The shape fits perfectly around my waist and my arms relax on it while I knit. Very comfortable and takes stress off of several joints, mostly my shoulders.  

I have recently knitted my first sweater, which led to me knitting my second sweater. I never thought I would be able to knit anything so advanced as a sweater. I have done scarfs, hats, even blankets, but to me the sweater is the hardest skill wise. It was always Oh I hope to one day, but I never thought it was truly achievable especially with RA. 

I am incredibly proud of myself for trying it and sticking with it to finish two beautiful sweaters for my daughters. I will be knitting another one soon. So exciting. 

I have my rheumatologist appointment on Monday. I am knitting my Doctor a cup cozy as a reminder of why we must keep fighting my disease so hard, I need my hands, please help me. I hope she likes it. 

Thanks for stopping by my blog again. Hope you are all having a great day. 

One silly cold and a lot of pain

I used to be one of those people that could work through a cold, work with broken bones, work when I was unable to walk. Now a little cold makes me unable to walk, ok not completely but it sends my pain sky high and makes walking very hard.

This is not a bad cold, I'm congested in my head and that's about all so far. A cold mixed with an autoimmune disease though is completely different than just a little cold...in fact I don't get just a little anything anymore. 

What happens when you get sick is your immune system goes to work trying to fight off the virus or infection. With Rheumatoid Arthritis you immune system is wacky and attacks healthy tissue, joints, organs, even skin...it sees your body as a virus it must kill off. So for me when I get a little cold my immune system kicks up to full gear and attacks my tissue, joints, organs and skin. This puts me in a full flare.  

I can not get around well and need help with even the simplest things. Last night my husband had to help me walk to the bathroom, in the middle of the night, completely naked. It's a very short distance from our bed to our bathroom, but I couldn't even make that short distance. I had to wake him up to help me. 

There is even more fun to my little colds now, because I am on the chemos to fight the RA my little cold can now last anywhere from a week to a month, sometimes even longer. 

So this little cold is why I haven't been around much online. I have a wonderful friends wedding to attend tomorrow and this cold won't keep me from making it, being there for her special day is more important than my silly cold. 

Thank you again for stopping by. I hope everyone has a wonderful day. 

This was written on Friday Jan 31st but as I forgot to post you're all reading this a bit late. 

Overly Active RA Day

 Unfortunately my bad days still seem to outnumber my good days. I still have faith in my new medication. I have noticed improved energy, which I am not sure if that's a good thing or not. More energy makes me want to do more, which my pain level doesn't agree with...it's a vicious cycle. I really wish I could learn where that fine line between getting things done and overdoing it, I think it's like the end of the rainbow.

There are definite stages to my bad times, I'll say times as I hardly ever just have a bad day. First stage is my emails pile up. The funny thing is I will still open them and look at them, but then I can't follow through with the action it requires ie replying or following it to a webpage to complete an action. I look and just keep marking them as unread.

I go through Facebook and want to comment on things but I only hit the like button, commenting is too hard, I worry if I'm making sense in the comment because I know my brain isn't clicking as well as it should. Even this gets to be too much, soon I won't even hit the like button. I know if people see me on Facebook I will get messages and I just don't have it in me to be able to answer a message. I don't want people to think I'm ignoring them so I just don't like anything. Soon it gets to where I don't even get on Facebook. 

I have little habits when my pain is bad. I always try to hide it from my family, but my husband is so observative he always catches onto them. I'll share a couple of my signs; I wiggle my legs first when the pain level starts hitting higher than my normal level. Then when the pain gets even higher I hum, I have caught myself humming in public before, it was a little embarrassing, I have no idea how long I had been doing it. When I hum it's not even a song really it's just a soft hum with no rhythm. 

I hope soon my good days will out number my bad again, I have so many things I want to do. I feel like my life is on hold, constantly waiting for a good day to come around, but more and more time keeps passing. 

I should think of better phrasing than bad day, maybe active RA days or in my case overly active RA days. In all honesty in my life I rarely have a bad day, everyday my husband, daughters and dogs make me smile,make me so proud, make me laugh etc etc. So really with such an amazing family there are no bad days. All in all my life is good, I just wish I had less overly active RA days. 

Thank you everyone for stopping by. Hope everyone is having a non flare day. 

Acceptance

We went to the movies last night and the theater we went to is not an easy one to navigate when you're hobbling, so we brought my wheelchair. The handicapped theater seating had no one in them so I was able to sit in the theater chair and park my wheelchair beside me. The theater chairs are leather and much more comfortable than my manual wheelchair. We were actually able to sit all together as a family in the handicapped row. It was really great.

There was a tall teenage boy sitting behind my wheelchair and he had his feet up on the bars. Everytime he would adjust his feet he would get closer and closer to my wheelchair. I felt like his feet were on my head and in my space, now remember I'm not sitting in my wheelchair. This feeling of having my personal space invaded while he was too close to my wheelchair tells me I have made a huge hurdle in my new life... I have accepted my wheelchair as part of me. It has always been a tough relationship for me with my wheelchair, I didn't want it, I don't like that I am at the point where I need one, even if it's not all the time. 

But this moment of this young man intruding on what I felt was my personal space was a huge turning point for me. ACEPTANCE. I accept that I need a wheelchair now and then. I accept that this is my personal wheelchair. I don't want your dirty shoes on the extention my body sometimes needs, just the way anyone would be bothered if his feet were actually hanging over the chair you were sitting in. 

I kept pushing and pulling my wheelchair this way and that way to keep him from putting his feet on it. Finally I got bold, this is very out of character for me, I turned around and politely said can you please watch out for my wheelchair when you're resting your feet? He apologized and took his feet down. 

If I had more time I would have told him this wheelchair is a part of me, it's what allows me to do these things with my family and when you put your feet on it I feel as though you are invading my personal space. That's right, I wanted to tell him how my wheelchair was a part of me. This is such a huge turning point for me. I accept my wheelchairs. They are a part of me, they help me do fun amazing things with my family again and please keep your feet off of me. 

Acceptance sure feels good. Thank you for stopping by and remember if you liked what you read make sure to follow my blog so you get notice of any new ones, and the best way to compliment me is to share my page with your friends. Hope you are all having a wonderful day. 

The sexier side of RA

I was talking to a friend today and I had to laugh at the stuff that we all talk about like its normal for everyone. That is the great thing about chat rooms that are specifically for Rheumatoid Arthritis or Autoimmune Arthritis, they're safe and everyone is automatic friends, just like being kids again. Remember how easy it was to make a new friend on the playground, you're both on the swings so you're instant friends. It's the same way in our chat rooms, we all know we have RA in common so we know that we are understood and safe. 

I just had to take a moment and laugh about how our chat rooms may sound to an outsider. I mean when you really think about it RA is down right sexy. Let me give you a taste of conversations that are a common occurrence in our "safe rooms"....

First remember we take chemos that in itself is just pure sexiness, the hair loss, the vomiting, bowel movements or the lack there of are not outside of our comfort zone of acceptable conversation, anything and everything goes in our rooms. Our conversations would make most people uncomfortable and would probably not be appropriate in normal conversations. 

Then the sexy joint damage that the disease itself causes. You aren't sexy until your toes or fingers cross without you trying, heck most of the time we barely notice when a new joint is pointing off in some wrong direction. My second toe crosses over my big toe now on both feet, it's rather funny when I paint my toe nails and find my toes stuck together as they caught in the drying paint. Rheumatoid nodules are not as common of an occurrence with RA but there are those lucky sexy warriors like me that get these ever so attractive lumps under our skin. Speaking of lumps, rashes and acne are very common from both our diseases and the medications to treat them. 

Infusions and injections are tossed around as if they are an everyday experience for everyone. How casually we toss medical terms around would lead some to believe we have a career in medicine, which we do, we're just on the other side of the stethoscope.  I have had Drs ask me if I am in the medical career field, my answer is no just a professional patient. Fighting and treating this disease is a full time job or a career, in a field I'm sure non of us would have chosen. I have met some of the greatest people in my un-chosen field though and have made some pretty amazing lifelong friends. Unfortunetly with a disease like this we sometimes lose those friends, it's a tough road. 

As you can see I find humor is helpful. I haven't been able to do much of anything lately as my RA is very active. I need to speak to my Dr about what we do from here, steady flare and a bunch of new nodules, which is another sign of disease activity. So I'm just sitting around getting sexier by the minute. 

I have to say the fact that we talk about chemos like its nothing just shows me what strong warriors we all are. Have you really stopped to think about what we do to keep going? Pat yourselves on the back because dammit we are strong, we are amazing! We are fighters! 

Please forgive me if this is sporadic and chaotic, my brain doesn't flow well on pain, it tends to jump all over the place....look a pretty bird, what was I saying...I think you know what I mean. Forgive me for my flaws, I am human, and as always thanks for taking the time to stop by, I know what a valuable commodity time is and I'm glad you chose to spend some of it with me. 

Personal Bubble

I'm sure you have heard the term personal bubble. Some people call it their personal space or personal space bubble. Urban dictionary defines it as the area around a person, aprox. 1 - 2 feet (depending on culture), that you should not enter without their (vebal or non-verbal) permission to do so.  Everyone has one, some people have a wide spread bubble and others are smaller. 

There is a funny thing about personal bubbles that I have learned, the personal bubble seems to be around a persons face. Meaning that if you are not directly in front of their face their personal bubble seems to get smaller or almost non existent. You could try an experiment with a friend and stand face to face and see how close you are comfortable standing keep inching closer and closer. Then try the same experiment but start by standing back to back, I am sure that you will end up standing much closer before you feel uncomfortable. Which if you think about it makes a lot of sense. 

My problem is when I am using a wheelchair I am no longer at face level with most people. Which means they are perfectly comfortable standing squarely in my personal bubble. They will comfortably stand with their rear in my face, while I am twitching and sweating trying to keep myself from poking them to remind them that I am there, they are even comfortable with facing me and because they are looking over me they still feel comfortable, meanwhile I am looking into someone's private area, because its maybe 6 inches from my face. 

The worst area that people are perfectly comfortable popping the personal bubble is in elevators. I will still never understand why people must constantly test the max weight of these dangling boxes of metal. Is it really that hard to see that it's full and wait for the next? Why must we always seem to be trying to break the world record of how many bodies we can cram into an elevator? 

Anyways as I was saying, people are more comfortable within another persons bubble on an elevator. Which when I am using my wheelchair means these strangers would be perfectly happy to sit in my lap just to make this exact elevator, gotta beat that world record right. I am not comfortable enough to say something to these people. I am sure that they would be embarrassed if I actually pointed out what my view of them is and how close that part of them is to my face. I know I would be embarrassed if it were me. 

This is a rather funny blog, but really I would like to remind people of the personal space of others. I know that it happens to others, like children, and shorter people, so please be aware and courteous of everyone's personal space bubble. 

Hmm does the tallest person in the world have a really small personal bubble because no one is ever at their eye level? 

Thanks for stopping by again. Sorry it's been a while I have been in a nasty flare. 

Honestly, sometimes I'm scared

This is me being transparent opening myself up truly showing a side of me that doesn't come often, but when it comes I feel like I'm sinking there is no light at the end of the tunnel this is it for the rest of my life. It's only downhill from here.

The other night while I was counting out my weekly medications, I have a weekly container for my pills that separates them into each day of the week. last night while counting the pills and separating them into my container I dropped two pills onto the tile floor. I almost always drop one we have tile floor in our bathroom and my dropping pills has become almost a joke between my husband and I so I hear from our bedroom "dropped one", then the second pill dropped, which in the scheme of things is nothing, but for me that night that was it, two was too many. My hands were not working well and in all honesty I should have asked for help, but I am to stubborn for that. I used a shelf to support me while I bent down to retrieve my dropped pills, the shelf was missing a bracket and tipped forward and the contents spilled over. I am lucky I didn't hurt myself, but I did hurt a handmade figurine my husband had gotten while on a Humanitarian trip in Panama...that was it I lost it! 

My husband was worried about me and was trying to come in and help, he was worried about the broken ceramic piece and whether I had in fact hurt myself. He was trying to open the door to the bathroom which was blocked with debris. I started crying and told him I'm ok please just wait until I pick it up so you can actually get in. I cleared up the broken pieces and started letting my mind go too far down the negative path, the path I hate, the path I normally avoid at all costs, but sometimes, just sometimes I can't be that strong anymore, sometimes I have to cry it out....sometimes I am scared. I started thinking about my independence that is slowly slipping away from me, all the things I couldn't do anymore, all the times I have to ask for help, what about when the disease progresses more, all the stuff my husband has to take over now that I can no longer do, what if something happens to him, I am not comfortable enough for anyone else to help me, I'm too strong willed to ask someone else to help me. What if I just can't be independent anymore?

I went and laid down and just cried for a while, my husband came to my side and held my hand and just waited for me to be done. Then he had me look at him, btw he has amazing brown eyes and he told me how much he loves me and how he will always be here for me, that he loves taking care of me, that I am worth it and I am amazing and strong and how he is the lucky one. Wow! I'm not sure if he is the lucky one or not, but I know that I am lucky, that I have an amazing husband that loves me and that alone makes me want to fight this disease.

These are all very real possibilities with this disease, this could be my future. One day I may not be able to be as independent as I am now, one day I may not be able to take care of myself.....and honestly that scares me, but I know that my husband will be there every step of the way. Whether it's sitting in the waiting room during my infusion or holding my hand while I have a good cry, but he will be there with a patient smile and a heart full of love.

On a happier closing note, because I am a very positive person. I can still do so much for myself and these really bad days that suck me into a black hole of sorrow and lets be honest self pity are few and far between. Today will be a good day, maybe not a great day, but a good day. My husband will make me smile, because he always does or my kids will or even the dogs, there is so much to be happy and thankful for, so today will be a good day.

I hope everyone has a good day. Thanks again for stopping by. 

Assistive Devices

Lets talk about Assistive devices. What really helps and what do I recommend?

First know I am a very stubborn person so none of these were easy. My husband lovingly coaxes me into the changes I need to make to stay as independent as I can. Ok lovingly coaxing is very hard to achieve with someone as completely stubborn and thick headed as I am, kudos to my husband again he is such a loving and patient man. I am sure there have been times when he has wanted to knock me upside the head for doing things the hard way just to prove I can, I must admit I do pay for my stubborn moments later, but change is hard for everyone right?!?

First and foremost get a handicapped placard for your vehicle, this is the tag that allows you to legally park in a handicapped spot. This is hard to admit you need, even if you don't feel you need it yet get it now and keep it in your vehicle for one of the days where you walk into a store strong and by the end you're really wishing someone could pull your car straight into the store...or better yet just magically transport you home. These are the days that you will be glad you got yourself a placard. I had read early in my RA to get one and I wish I knew who originally suggested it so I could thank them. So let me just say here thank you for the wonderful recommendation it has saved me on many occasions. 

The next thing I highly recommend is getting assistive utensils. I really like the rubber thick handles. These are such an easy replacement, but it really saves the fatigue on your hands. Also treat yourself to a good chef quality knife set. I personally like cutco, but there are many others that are good, spend the extra money to really get a great set. This will save you sawing your food or applying unneeded pressure on your joints using a dull knife.

Another everyday item we can change that will really save our hands is lever door handles. Twisting a door knob is hard on so many joints in our hand, wrist elbow and even all the way up to your shoulder. This is also a great way to save yourself the embarrassment of getting stuck in a bathroom because you can't turn the door knob, true story...more than once. Moving on...

Similar to door knobs are sink and shower fixtures. Some are the twist knob style, these are also hard on the small joints in our hands. There are so many varieties for changing this out go to a variety store where you can actually test the handle and see what works for you. Stores like home depot and lowes are not good places to test these as they are usually fixed and do not move, also many of them are out of reach. I'm not saying you can't buy them from these stores if the price is right, just warning you that you can't test the merchandise as well there.

Change things in your kitchen. Make sure you have the things you use the most in the easiest spot for you to access, even if it seems backwards to others. I have also changed out my dishes to Corell, these are light weight and hard to break. How many times have you lost your grip and lost your dish because of it?  I lost a few dishes before making the switch. Get a good mat to stand on one that supports and has some give so it will save you fatigue on your joints. This is something I still need to get myself.

Scissors, get a good pair with the spring loaded action I recommend Fiskers soft touch. This one doesn't fit well in any category because scissors are used for so much. I also got spring loaded garden sheers for gardening, which doesn't happen as much lately. I did get one of those weed pullers on a pole to try to help, mine was a poor choice it doesn't extend so it's just at the right length to be really hard on my back. I recommend looking for one than can extend to save the strain on your back, if you choose the right fit for you I am sure this could be a very helpful tool.

Handicapped toilet....wow this one has saved me from some embarrassing moments. Ever have your joints not work and you just can't stand up? Save yourself the embarrassment of having that happened while your pants are around your ankles and get a handicapped toilet. Which also brings up my previous post http://ra-gal.blogspot.com/2013/08/warning-potty-talkit-handicapped-stall.html if you haven't read it yet I spoke of people misusing the handicapped stall. Please save us the embarrassment of calling out for help and don't use the handicapped stall if others are open.

Other things I did were like getting an iPhone for the touch screen capability, this was when there weren't other touch phone options, so I think any touch screen is a good choice to help your hands. My hubby also convinced me I needed an iPad for my hands, he often does things like this to validate his want of a new techie toy, my husband is a big techie junkie. I have to admit he was right with this one the iPad has been great for me.

The last one I will mention is a push button start vehicle. They are a lot more common now, of course not all of us can afford a new car to change this, but if you are shopping for a new vehicle put this on your list as must have. Turning a key was too hard on my hands and wrists, a push button start is helping me keep my independence longer. I have never been a fan of leather seats...too cold or too hot and you stick to them, but I have now realized how easily I slide into my seat with leather seats. The strain of the swivel in on my hips is now gone, I was looking into the lazy susan type device that helps you swivel into your car, but now with leather seats it is no longer needed. So I now love leather seats, I still have the too hot in the sun problem, but mine do heat up with the push of a button another feature that is fantastic for the hips. The other thing I looked for is a good height one that I didn't fall down into, or climb up into, it's right at a natural sit position for me. I also got touch screen stereo with navigation and blue tooth the touch screen is easier on hands than turn dials for volume control etc. The biggest reason for my car upgrade was my wheelchair didn't fit in my compact prius so I had to upgrade...I still miss my prius, but I did stick with Toyota and got a Rav4. It is really a great rig and I am sure I will slowly fall in love with it, but I am a small car personality so it was hard to say goodbye to my prius. These are some things that I would look for if you are in the market for a new vehicle. The Rav4 is a great choice for me make sure to find yours.

Thanks again for stopping by hope to see you again soon.

I'm lucky

Today is my 18th anniversary. At the age of 20 I met this amazing man, he made me feel beautiful, he made me realize what my potential was and helped me achieve it. My husband and I met through a mutual friend, and it was instantaneous love at first sight. It didn't take us long to realize we were made for each other so we married very quickly, because when you meet your soul mate you don't want to waist another second apart.

Many didn't think we could do it or thought we wouldn't last. It is nice to be here 18 years later and prove them all wrong. It still amazes me how much stronger our feelings have grown and how much closer we have grown together. I was young when we wed he was a bit older and I feel that we did a lot of growing together, both as individuals and as a couple. Our journey has been amazing. 

Now that my Rheumatoid Arthritis is active and rapidly progressing my husband has had to help me out a lot. We are living the in sickness part of our vows and he is proving all over again how lucky I am.  

He has done a lot of basic things like cooking more, having the girls help with that and cleaning. He put lever handles on all our doors (I highly recommend anyone with RA to do this). He has bought techie toys like iPad and iPhone to make things easier on my hands. He worked with the insurance to get me a manual and a snazzy electric wheelchair. The list goes on and on and I will try to make a blog about some easy assistive devices another day. 

I want to take a moment to publicly thank him here on my blog and to tell him thank you for loving me. I hope everyone has a great day...I know I will :)

Continuation of there is No Cure

If there is no cure for Rheumatoid Arthritis then why can we search and find so many pages that tell us that people are being cured of RA?

There are several reasons behind this problem that we encounter and unfortunately there is no way to fix all of them. But we do have an option The International Foundation For Autoimmune Arthritis has a page where we can report any article, advertisement, column or broadcast that is providing false or misleading information about Autoimmune Arthritis I will attach the link at the end of this page. They have corrected pages already thanks to people like us sending them in.

I will talk about a few different reasons that we find so many pages with claims of cures or remission.

1 The biggest problem and probably the easiest one for others to make is people referring to Rheumatoid Arthritis when clearly they mean Osteoarthritis. Now this is a clear sign for those of us living with the disease to stay away from any recommendations the page makes we know they have no knowledge or education in our disease. The hard part is people not living with our disease come across things like this and believe it as truth. Dr Oz is a big one that so many people believe he is an expert on everything and he has made exactly this mistake (he did correct it in a short sentence on his page) but the people watching that show now believe obesity can cause Rheumatoid Arthritis.

2 With that I will lead straight into #2 the sentence I just wrote Obesity can cause Rheumatoid Arthritis, which again is incorrect obesity can lead to osteoarthritis, anyways that could possibly now come up out of context if someone were to directly search those exact words. To many people that is enough they don't go to the page to read the whole story to realize that is not what was truly being said.  I think this happens a lot more than we realize. People don't have a lot of time they skim they find what they think are their answers and then they share and share and share again. Seeing the pattern yet?

3 This is the one that hurts me the most because it has to do with lying. I hate lying I always have as a child my stomach would get so upset when I knew someone who had told a lie. I have never been able to lie, it's just not part of who I am. I am a person with a really big soft heart and Lies really hurt my heart. So here it is #3 Salesmen are being paid to research diseases and post how it cured their ailment and post often. They want their product to get the most hits with search engines so they make up consumer names and stories and boost their own product. 

4 This is something my rheumatologist talked to me about because I asked why do we see so many claims of cures and remission with internet products. She said that there are many Drs who diagnose patience with RA without adequate blood tests etc and that patient may not have had RA to begin with, sadly this happens a lot. Then the misdiagnosed patient takes some supplement and wham they're cured! Well of course if they never had it to begin with. I'm not saying they didn't have something wrong with them, and I'm not saying that the supplement they used didn't make them feel better, I will say I am happy for them that they found something and got better. The unfortunate part is that now they go around stating that they cured their RA that they most likely never had. 

5 This is my favorite because it reminds me remission is sometimes possible, though not the norm it is sometimes possible. I need these small pieces of hope to keep me going sometimes. People who go into remission because sometimes people are lucky that way and before they went into this remission they tried let's say gluten free; so because these simultaneously happened they figure they were cured. They go all over and shout it from the rooftops, I mean wouldn't you if you thought you had something that could really help us all. They get on all the chat groups and tell everyone how great they feel and how you can do it too. But it is Rheumatoid Arthritis and the other shoe has to drop right...I have had a person who came back to a page I frequent and apologize profusely she went gluten free and found she was feeling great cured of Rheumatoid Arthritis and had ranted to everyone you must try it it really works etc. well unfortunately for her her RA flared up again with a vengeance, while she was still living a gluten free life. So the poor thing had to come back to her groups with a little egg on her face, but I feel she is an amazing brave woman for coming back and letting us know she made a mistake and she was sorry, kudos to you I'm proud to have you in our mixed circles. I have also seen others who have made the same mistake and have returned to the groups to let us know they were mistaken.

I am sure there are other ways these postings come about and become so popular that we worry all anyone will ever know is how rum soaked raisins cure your arthritis. We worry the lies will outnumber the truth. So what we need to do is RAISE AWARENESS...SPEAK THE TRUTH...talk to people and let them know what it's really like, what this disease Rheumatoid Arthritis really is: daily fevers, flu like symptoms, fatigue (like you have never known), pain in every joint in your body, headaches, hearing loss (yes there's a joint in there too), organ damage from swelling, heart disease, rheumatoid lung, the list goes on and on even death.

Here is the link to report misinformation to IFAA (International Foundation for Autoimmune Arthritis)
http://www.ifautoimmunearthritis.org/Awareness_Hotline.html

Thank you for visiting my page. If you want to stick around you can follow my blog, sign up to get emails when a new post is written, and now I have started a facebook page so look for me RA_Gal. Have a great day everyone. 

There is no cure, but thank you

I am not sure if this happens to people with other diseases or if for some reason Rheumatoid Arthritis is really targeted. I run across so many people that have no idea what this disease is and assume its osteoarthritis, but then there's the others....

The well meaning I have a friend who has a 7th cousin twice removed who used rum soaked raisin and cured their RA, or honey and cinnamon, cherry juice, losing weight, cutting out sugar, gluten free, magnets, ginger, green tea etc etc.... 

Do people diagnosed with diabetes get random people or even friends and family telling them cut out sugar or change your diet and you will be cured. Or how about people with cancer are they told to go gluten free to cure their cancer? I don't think so...why are we so targeted? (On a side note: My Mum passed from Breast Cancer and I never recall anyone telling her crazy cures like these, my Dad was diabetic and I never heard anyone but his Dr discuss his diet with him, so I'm not using these as suggestions without some knowledge about them and am definitely not trying to offend anyone). 

We all have someone who has suddenly become an expert that has tried to cure us with snake venom, or bee stings right. They know someone who knows someone who cured themselves or they read it on the Internet because everything you read on the Internet is true right. 

I'm here to tell you I have sadly tried some of these things. I mean some of them really sound like there is truth to them right, experts back it the web page says so. 

Lets talk about the stuff being sold, special "natural" supplements, vitamins etc...if you really think something sounds great first realize people are paid to promote these products. There are people who get paid just to go out and promote a product on websites. If there are experts listed by name who promote the product do a search on them. What can you find about them? Do they actually promote that product on their professional page? Search the products reviews (not just on their page), check the better business bureau, WOT (web of trust) etc.

If you still feel this product seems legit ask your Dr. Please always ask your Dr before trying anything even if its promoted as natural, even if it is natural, even if others with RA are telling you it works for them....ASK YOUR DOCTOR. 

I so often run across well meaning people suggesting dangerous supplements on RA chat groups and help pages. Always alway always ask your doctor. 

I have tried the gluten free diet and an elimination diet to see if there are any foods that trigger or flare my RA...I am sad to say after the grueling process I still have Rheumatoid Arthritis...I was not cured by changing my diet. On the other hand I do believe some people find some relief by changing their diet and eating healthier. I did make some changes in my own diet and am eating cleaner and healthier, but again non of this has cured my Rheumatoid Arthritis, I have not accomplished remission with these changes, honestly I can't even say that any of this reduced my pain or inflammation, but I do feel healthier as a whole for making these changes. I feel each individual needs to find what works best for them. 

The biggest thing I wanted to help was my fatigue level and I actually did find something that helps a little and it is exactly the opposite of what everyone is trying to tell us to do....Carbs lots of carbs and gluten help my energy, but I'm not talking about boxed pastas. I have a local bread shop that uses no preservatives and all natural ingredients and healthy grains in their breads and I find after eating the bread I have increased energy, and if I eat it on a regular basis I feel a difference. 

Again what works for me might not work for you, every person with Rheumatoid Arthritis is different, that's why this disease is so hard to treat. Listen to your body and your Doctor.