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. 

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.

Clutzy Day

Today was a clumsy day for me. There are some days when my grip is just way off. I can't seem to hold onto to anything for long sometimes I just can't hold it at all. This is common with Rheumatoid Arthritis. It happens for me the most when I have a lot of swelling, which I am dealing with today. 

It started when I was trying to bag up veggies and I kept dropping some of the green beans. Not that big of a deal because my dogs love vegetables so I had the cleanup crew at my feet. Next was a bowl, this was a good hard drop but thankfully I have corelle dishes bought for weight and the added benefit of hard to break. No dishes or humans were injured during this episode lol. 

Next was a water bottle, of course the kid was off at the time! I don't know how it missed the three electronic devices I had right by it. Pure luck only a chord got a bit wet, oh and my ipad case....always get a case. 

 

Once a week I refill my weekly pill dispenser. I always do this on Sundays. I often drop my pills as I am trying to fill this. I have trained my dogs very thoroughly on the "leave it" command. My dogs will not touch anything if I tell them to leave it, to me this is the most important command you can teach your dog as it can save their life. I was scared of filling my dispenser because I had already dropped so much. I actually didn't drop any pills, I'm not sure how it happened but am so glad. 

Tomorrow I have to drive for about 4 hours. Thankfully this will be broken up, 2 hours to get where I am going then two hours to get back. I haven't taken this long of a ride or drive since my RA has been so active, so I will probably have to make multiple stops to stretch and get my joints moving. I know it will be pretty painful and difficult to do, but I'm hoping it won't be too bad, it will be a good test as this summer we will have some even longer trips. I do have some helpful hints for traveling with RA that I will share in another post soon. It will be a good reminder for me too. 

Thank you again for stopping by. Hope everyone is having a great day. 

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. 

Please push in your chairs!

My husband is in a physical therapy appointment. I tag along because we have a couple of errands to run on the way home. I am in my manual chair today because it's quicker and easier. I don't go back with him for his appointment because I always feel a bit in the way. There is a small cafe in this building, it's a large clinic with many specialists and even an outpatient surgery center. Anyways I decide to be brave and wheel myself to the cafe.

Wheeling myself is something I couldn't really do in my old chair, my new cool purple chair is much easier to wheel myself in. Easier, but still hard with sore swollen hands and shoulders. I navigate into the cafe thankful there is a handicapped button for the door, even more thankful that it actually works. You wouldn't believe how many don't work, give it a try next time you see one if you find it doesn't work do a handicapped person a favor and report it. I do notice there are no buttons to get outside of the building from the cafe, so I would have to go back through the building to get to an accessible door. I always wonder why there is still such a lack of access for the handicapped. 

The door is not my obstacle today, lazy people are. I come into the cafe and it's small and has numerous tables and chairs. The hard part for me is no one has pushed in their chairs so for me to navigate my way through I have to push in all of the chairs to get to a table. It's really maddening how lazy people can be. It's so simple to push in your chair, you parents made you do it all the time I am sure, but somehow as an adult no one is capable. 

As I'm sitting here eating my muffin and writing my blog I see 3 people get up and leave and not one of them pushed in their chair. I sit here wondering do I say something? Maybe they would appreciate hearing what a big obstacle a chair is for some, but I feel that they will not appreciate my advice but rather be offended. So please next time you are out to eat or anywhere you end up sitting in a chair at a table, please please push in your chair. 

I hope everyone is having a great day. Thanks for stopping by. 

Rheumatoid Arthritis Awareness Day...also known as Super Bowl Sunday

Today is Rheumatoid Arthritis Awareness Day, but as it is also Super Bowl Sunday the awareness day got a bit lost in the chaos. Also a lot of the promotors and creators of the RA awareness day are on the east coast and did everything morning time their time, which equals way too early morning Pacific time which is where I am. I was a bit sad to not be able to take part in the live chats and other events.

I try to think of anyday and everyday as Rheumatoid Arthritis Awareness Day. That's what my blog and my Facebook page are all about. I can't go through a single day without RA reminding me it's in my life to stay, so I try to share with others to raise awareness. 

Yesterday I went to a good friends wedding. It was a beautiful day and so glad I could be apart of their wedding. There were a few difficulties for me though. I knew I would have to use my wheelchair to make it through the day. We get to the Chapel and it is a gorgeous historic building built in 1884. First problem no ramp. Thank heavens I am still able to walk, but stairs are really difficult for me and even harder when in a flare. I can't imagine how hard it is for my husband to haul my chair up the stairs. I don't like the attention I draw when in my chair either and boy oh boy nothing draws more attention then hobbling up stairs while hubby is hefting wheelchair behind lol. 

I made it in and it was so worth it. Wow what a stunning building. Beautiful chandelier when you first walk in, original tin walls and ceiling, beautiful stained glass windows. It is small and quant and perfect for my friends day. The chapel managers comes up to me and says how she always feels so bad for people in chairs when they come here and apologizes. She talks to us some about the building and I'm glad I got a little inside information. 

The reception is held in another location at a community center. We arrive a little late so the two handicapped parking spots are already taken. Thankfully we are using my manual chair today instead of the electric, no ramp needed for getting it in and out of the car. This building has a ramp thank goodness, but it is steep and long and poor hubby has to push me the whole way. He says it's no big deal he loves helping me, but I know it's painful for him, he has severe osteoarthritis in his knee. 

I had a wonderful time at their wedding, but today my pain and fatigue have kicked in full force. It's frustrating that to go and do something fun that I know my body will make me pay for it in return. I have to always plan a week of rest before and after a big event like this. Some things will take a little less time, but I always have to make sure to get some recovery time after anything I do. 

Today I am relaxing and watching the Super Bowl. I have to admit I am not a football fan. My brother in law always made us watch football and he's a huge 49ers fan so when I was younger I chose the Seahawks to mess with him and I have always liked the underdog :) well now my team is in the Super Bowl. 

Here are the thoughts of a non football fan...I really still do not understand the game, first off a commercial staring bad lip reading Yes! Amazing! Second Ellen's beats commercial I totally love it, note to self must get Ellen blue Beats...now the game why do so many dudes all have to pile on top of each other? There is more butt tapping and ass grabbing in football than in a low rate porn, what's with that? 

I hope everyone is having a great day, as always thanks for reading my blog. 

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. 

RA Gal is an acronym

I realized I never explained the meaning behind my name. There is the obvious I am a gal and I have RA, but it's actually an acronym.  My husband is a military man and the military loves acronyms. He came up with my amazing name. The Gal in RA gal is an acronym for gimp a long. Pretty cute right. I think it's a perfect fit. Thanks hubby as always you are amazing.

I hope you enjoyed that little tidbit of info :) 

As always thank you for taking the time to stop by my blog. 

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. 

Invisibility Chair...aka my wheelchair

My wheelchair has an amazing super power it turns me invisible when I get in it....like Harry Potter and his invisibility cloak. I get in it anywhere in public and poof I'm invisible. This would be a really cool trick if at times it weren't downright dangerous. 

I was out doing Christmas errands with my daughters and I was using my manual wheelchair. My youngest daughter was pushing me in the parking lot, there were no handicapped spots, many were taken by non handicapped people or everyone is suddenly forgetting to place their handicapped placards. Unfortunately it is common to see this especially closer to the holidays, another good one I see is leaving the handicapped person in the car so you can get things done without the nusence of the handicapped person slowing you down, because I'm sure they love being used for prime parking. 

Anyways on the way out of the store a full sized older SUV (a Chevy Blazer 1980's style) starts rapidly backing out of their parking spot, my daughter is trying to pull me quickly out of the way I start waving my arms in a desperate manner, he continues backing up, I know my daughter is not able to move me out of the way quickly enough at the speed this vehicle is reversing I start screaming hello, at this point the man is well out of the parking spot and should be changing to drive anyways. He is finally alerted to our presence by my screaming, my daughter said the passenger was just looking at us the whole time, why this woman did not alert the driver to our presence I have no idea. Another costumer in the parking lot is shaking his head and makes a remark on how he didn't think the man was going to stop either. I understand my wheelchair is lower than his vehicle, but I have two other pedestrians with me and he never even looked over his shoulder. I believe he was planning on driving in reverse to the main road rather than go the rest of the way down the parking lot. 

I become invisible in my wheelchair even when people look me right in the eye, they will still step right out in front of me. People will walk around me, partially over me, straight into me. I feel like I am just a speed bump while they are on their life saving mission to get whatever they need. I even had a man ram my chair with his shopping cart, he gave a quick, quiet sorry as he quickly walked away. I am sitting there in shock and pain because he rammed me good. 

I was always taught manners and there is a different level of respect that you extend depending on the recipient. Elderly and handicapped were always given a higher level of respect and assistance, you should naturally hold the door for them, always smile and look them in the eye. Respect and manners seem to be rapidly disappearing and I'm sad to see them go. 

Who's with me in bringing back manners, common curtesy and respect. I for one am going to be talking with my children about it more and making sure that what we have always taught them is actually being used in everyday settings. 

Thanks for stopping by I really apreciate you taking the time to check out my blog. Remember the best comlimemt is to share my blog with friends, hit the follow button and feel free to share. 

I am angry!

That's right I'm going to say it. I am angry, I'm mad, I'm pissed off. I want more. I want my life back. I want my medications to work. I want better for the other sufferers, especially for the kids. 

I still am so hopeful every time I take my meds, or try a new one, that this one will work, this is the one. Then it ends up not working not being the one. Yes biologics are great and they work so well for so many, but what about those of us that fall through the cracks? Those of us that aren't seeing the benefits of the biologics they show in the damn commercials. That's right I'm calling them out too, how many of us can actually squeeze an orange, play golf, braid our children's hair? Show us that your meds can help us get out of bed, stay awake for the entire day, do something fun with our family. Also why do none of these meds mention that they will prevent death from RA? They only list that their meds may kill you too so what's the draw? The hope for a better life, the hope that this will be the one. The miracle drug that will give me my life back. That will take away the fevers, the fatigue and the pain. I list these symptoms only and in this order because these are my hardest hurdles and this is the order of them for me starting with the hardest. 

My fevers are the worst. I have them almost everyday, but everyone's RA is a little bit different. Many RA sufferers don't have prominent or persistent fevers. Many would list pain first, I have a high pain tollerance, which is not always a good thing, and I don't think a lower pain tollerance is a sign of weakness...to me it's a sign of a good brain that communicates well with the rest of the body. People with lower pain tollerance know when not to do something stupid because their body tells them hey, that hurts. For instance a person with a lower pain tollerance would know their wrist was broken and probably not spike and serve a volleyball multiple times throughout an entire week with said broken wrist, they would also probably know when the pavement is too hot to walk on barefoot before coming home and seeing large blisters appear. These are just a couple of random examples that may or may not have happened to me. 

Even with my level of pain tollerance I get fed up. I breakdown. I can't take this amount of pain non stop for this long without breaking down. I want better medications, I want more choices of medications that actually work, and dammit I want a cure! 

My latest infusion has not been working for me yet. I have been taking prednisone like it's candy. The funny thing is I still expect to take prednisone and be able to do it all, to actually get some things done, be able to function like a normal person. In reality all it does is allow me to survive another day, I wake up, and I can shower and feed myself, but unfortunately usually not much more than that. That's another thing that makes me angry, I expect more from it. I want more from it, and why do we balloon up in weight and get the lovely moon face, while athletes on steroids gain muscle and speed...what am I doing wrong?

Today, for a moment, I am angry. I will allow myself this moment, but tomorrow I will wake up and I will be thankful for all that I have. On Friday I will wake up and put all of my positive energy into knowing that my infusion will work this time, that we will be able to up the amount and that at the higher dosing, it will work. 

I am an extremely positive person, but sometimes I have to know that it's ok to be angry.

Thanks again for stopping by and remember the best compliment is to share it. 

Life picked up its pace, I'm limping behind yelling "wait for me!"

I apologize for how long it's been since I've made a post, my husband had recent knee surgery and I have been nursing him to get him back on his feet and chasing after me. 

While recovering he had a gallbladder attack and we spent five hours in the emergency room only to find out he needs surgery. I have to say I like being the patient better, at least when the pain kicks in. Seeing my husband go through that and not being able to help him broke my heart, he was so sick and in so much pain. I would take that pain from him and give it to myself if I could. I hope we get the surgery very soon! The Dr in the ER wanted to refer him to a surgeon herself but our insurance has referrals and steps we need to meet before we can be seen. Needless to say it's been a busy few weeks here at home.

This is when I go into what I call "chipmunk" mode. I know I have a lot coming up to take care of him and make it to all his appts with him...not to meantion sit through a surgery. Stress and energy will be spent, which means I need to be in chipmunk mode and store up for the hard days coming, I just store up energy or (spoons) not nuts. 

I start to take anything off my schedule that is not urgent, I hate to cancel plans but it's a survival mode and it has to be done. My family comes first, my health comes second everything else can wait. I cut back on errands, thankfully my daughters can pitch in and help. My emails start to really build up, I can't spend my energy on responding so those will have to wait. No social media because it takes too much time, we all know we get sucked in and spend way longer on there than we intended. I don't make phone calls or texts. Any plans will be broken. Any phone calls that need to be returned will most likely have to wait until a while after surgery is done. 

There is a lot of stress with taking care of  loved ones who are sick. There is also other stress going on in our life. I won't hash it out on here, but anytime anything is brought up about it my heart starts racing and my stomach gets upset and so I keep just trying to not talk about it so I don't lose energy on it...it is something where a decision can be made later like after all this surgery stuff is over. The hard part is everyone knows it has been hard for us so they want to see how we are doing with it all, but right now I just can't even think about it. 

My husband and I have joked about our sudden role reversals. Normally he is taking care of me, now I'm taking care of him. He knows how hard all this is on me and my RA is being a bully and kicking me while I'm down. I am a nurturer so I love taking care of him and I admit to spoiling him, but it is still very hard on my RA. 

Things have not been going as well as I had hoped they would with the actemra. I have new joint damage and a lot of new rheumatoid nodules. Thankfully they are all on my feet so they're not seen by everyone. Some of you may not know what a rheumatoid nodule is so here's a definition for you...A rheumatoid nodule is a local swelling or tissue lump, usually rather firm to touch, like an unripe fruit, which occurs almost exclusively in association with rheumatoid arthritis. 

I told my rheumatologist and she wants to look into upping the actemra dose as I am on the lower end of the dosage scale right now. My Rheumatologist commented this was the worst she has seen me. She is determined to help me and was earnestly sad that my miracle medicine was not performing any miracles yet. I just love my rheumy. 

So things are going to be tough for a little while around here. I will be using all my stored up energy and using some prednisone power to keep me going....prednisone is a steroid commonly prescribed to RA patients to help control the swelling throughout your body. It has a lot of nasty effects so I only use it when I really need the extra boost. I think I will actually reach out to friends to maybe bring by a dinner to help out. People always offer, I really need to take them up on it. DON'T BE AFRAID TO ASK FOR HELP. If you learn anything from this post it is exactly that, as I am the worst about asking for help. 

I hope everyone is doing well. Please remember to wash your hands often as it is cold and flu season and please keep sick children at home, so many kids are immune suppressed for many diseases not just JRA. We (the immune suppressed) can become seriously ill from something that a normal person can kick in a couple days. 

Have a great day and as always, thank you for stopping by. Hope to see you again soon, and if you enjoyed please share my blog with your friends! It's the best compliment you can give a blogger.