It's been a VERY long time since I've made a post in here! I'm still around! :-) My life has changed drastically I went off my RA medications last year to TTC & I now have an amazing healthy 9 month old baby boy. His Name Is Hunter.

He is my world! He was born with Neonatal Lupus, just the rash. As soon as he turned 6 months and his own antibodies took over the rash went away! This was rare though, they said it only happens to about 1%.. and increases with future children.. we do plan on having more children in the future though so praying they will all turn out healthy like this little guy did! 

My RA went away in my third trimester, so it was a tough pregnancy.

I have received lots of emails & I'm sorry I didn't have time to respond, life has just been so so busy! I havent seen a rheumatologist in over a year now and am actually going to see one on friday. I am currently only on predisone and a anti inflammatory. So i'm looking forward to starting Enbrel again. Other then that just enjoying my time being a mama! 

shingles

I got shingles :( noticed the night before yesterday, All on my left side of my back and it hurts so much!! It all started with my left side of my body hurting when it was touched even with clothes on! It felt like a sunburn but wasnt. This is by far the worst thing ive experienced. Ughhhh, i just want this rash to go away!!!

Avail Clinical

I will be doing guests blogs over on a website called Avail Clinical & my first article is now up! If you're interested in reading about my early experiences when I first go diagnosed go ahead and check it out. Just follow the link below.

I Am RA and I Am Here

I will be putting up hopefully at least 1 a week.

Ganoderma ?

I know it's been a long time since my last post but a woman at work who knows about my RA came to me yesterday with this tea, "Organic Green Tea with ganoderma lucidum" what is that? Well she said to take some time and do some research but that this Chinese herb may help me. So here in front of me I have 6 packets of tea to try. I am starting today. I googled the term and it said that this is a type of mushroom, and it is used in chinese medicine. I'm willing to try anything that's alternative. So I narrowed my search to Rheumatoid Arthritis and Ganoderma and found some interesting things!!

follow these links:

1. http://rheumatoiddisease.com/241661-Ganoderma-Lucidum-Healing-Herb.html
2. http://www.ganoderma-lucidum-benefits.com/2010/07/ganoderma-lucidum-and-arthritis/

& this one person's blog: http://theshroomlife.wordpress.com/2010/03/15/ganodermareishilingzhi-and-rheumatoid-arthritis/

facebook for this person: http://www.facebook.com/pages/Ganoderma-Diary/405638444007?v=wall&sk=wall

I want to here opinions, would you all try this? have you already tried this?

I need to make a rheumy appointment and see if he's heard of this herb.

New Pharmacy

I just need to vent. As you know if you've been reading I had to switch insurances on december 1st, I was no longer able to be carried on my dads. So I was able to get it from my work. I received all my info and card etc but found out that I had to use a different pharmacy for Enbrel to be delivered. This meant I needed to get a new pre auth and a new prescription faxed to them once approved. OK so that took time, this new pharmacy said they received it yesterday, cool they have all the info so I asked to schedule a delivery. Well this idiot woman on the phone was telling me how it needs to be "processed still" and they need to wait for whatever reasons 9 days WTF? I told her to make it urgent because I only have 1 shot left that I take today so I need more by next thursday. This just really frustrates me, I hate how insurance companies have no problem taking your damn money but when it comes to getting medications it can be such a freaking hassle. It just drives me nuts, and going through all this is just a reminder of how much i HATE having RA. I just hate it so much. & I'm feeling depressed now.

:(

New Year!

Happy New Year everyone, hope you all had a wonderful holiday season! Any new years resolutions? I haven't really ever had one, but this year i'm committed to taking 1 photo every day for 365 days, so if any of you are interested in following that adventure I made my first post today that can be found here :)

RA Update: Still working on the new insurance issue for Enbrel, I need another pre auth to get it started again and i'm hoping it's all settled within the next two weeks cause i only have two shots left.. yikes!

An iPad update

Posting from my new iPad I got for Christmas from my grandma god it's seriously great!!! I was able to view everyones blogs beautifully over an app call flipboard it's so nice and useful. My RA has been acting up lately so instead of codeine I smoked marijuana yesterday once and today, it really does help I'm never in pain after but I don't like to do it often cause sometimes it does make me feel weird but it didn't yesterday or today :) so that's good. I have to work 7:15 to 12am tonight I really wish I didn't have too :( standing on my feet a few days ago hurt so bad I had to call out the next day I couldn't move. So I will probably try to update more 2011 that's one of my new years resolution. Hope everyone has a pain free Christmas on Saturday!

medical updates & shoes

I got my new insurance card in the mail, It's a very weird feeling knowing that it's my own and i'm not carried on my dads anymore. I don't really like it, it's like.. another step to growing up lol. I know it might sound weird. I'm just happy it's not super expensive 64 bucks a month roughly just to have it, which is way cheaper then those expensive injections. I was thinking about switching my Rheumy to a woman instead. Mine is starting to.. i dont know bother me, sometimes I feel like he isn't giving me enough time, or like he doesn't care, I don't know I figure it might be easier to conversate with a woman rheumatologist instead. We will see how that goes. In other new in regards to my RA, I'm just about healed from that horible cold I had that last about two weeks. So I took my MTX on monday and did my enbrel on wed. The past few days i've woken up really sore in my hands/fingers, but i know thats because I stopped the meds for awhile while I was sick. I ordered some RX Crocs, the Cloud ones, I heard they run big and it's true they are a tad big but they still fit good with the strap. My feet have been really sore lately and so far, while wearing these shoes my feet feel so great! I love them. I am even ordering some pins to put on them when i'm feeling adventurous lol. They aren't the best looking shoes but I promise they make my feet feel great!


Today has been a lazy day I work this whole weekend but they are all 7:30pm-12am shifts, yikes. I'm not looking forward to it. I got xmas shopping done for the boy, his mom & my grandma. Just need to get a few other things for some family then I'll be done! Hope everyone is enjoying the holidays. =)

very sick

I've been very sick the past two weeks, so i've skipped 1 MTX shot and 1 Enbrel shot in hopes that i'd be able to heal quicker. So now that I am finally getting better I can feel the soreness starting to come back. It was so weird because while I had this terrible cold I wasn't feeling any joint pain or anything. I went to disneyland on wed and to my surprise my feet didn't even hurt! But now everything is coming back in sync and it kinda sucks, trading 1 for the other I guess.

UGHHH

"I wish I could just wake up one day and not have this stupid disease!!!! I just want some relief... a break, i'm so tired of my RA and how negatively it's impacted my life. I'm tired of worrying about health care and worrying about how much money i'll get a month because it's so hard to work without hurting in some way! I have a rheumy apt nov 29. Last one before the insurance change.

well happy thanksgiving everyone..."

That was my first update on this post. I decided to edit a bit. So I have had a horrid day quiet honestly. I feel like it passed by so fast that the entire day was filled with .. hm, pain and stress and crying. Made tons of phone calls today, 2 pharmacies, 2 doctors, a few insurance companies, a couple lawyers, and ssi.

Mistake for today? yeah i think i'm more happier when i forgot about all this crap in my life and pretend it doesn't exists, oh except for the days that I shoot myself up, that reminds me of just how serious things are. Seriously way to much to handle at age 23.. oh yeah I turned 23 last week on Nov 18th. I've been officially diagnosed ( by my rheumy) with my RA for 1 year. So happy birthday RA and to me.

what's changed? or whats gotten worse? or better?

I can say that my pain has improved since being on biological medication.. but it's not to the point where I would like it to be. I am still in pain .. a LOT. & the winter weather doesn't make it easier either! I've dealt with a lot this past year. & I still feel like i'm grieving! I can't get over the "why me" phase. Not only am I struggling with RA but also the financial hardships it's caused.

how do you all do it? I always used to be so optimistic, but ever since RA all i am is pessimistic!

Instant Chat

Hey guys I came across a really neat app i wanna share with you all because it'd be neat for us to chit chat via it if we ever need each others support and it's safer then giving out your phone number =P It's a texting app called "Kik" and it's real-time, meaning it works just like blackberry messenger! sweet! i've been waiting for something like this ever since switching to an android from my blackberry. Anyways this works with iPhones, Blackberry and Androids!! and it's FREE! You can download it from the App Store, or Market etc. Here is the website: http://www.kik.com/download.php You just create a username :)

Add me and send me a messenge letting me know who you are :D my username is: enchantedxkiss

RA & Work

Dear RA,

I hate hate hate you RA for making me unable to work 40 hours a week like normal people and earn more money to pay off stupid bills that I owe. & as I type this my wrists hurt too, thanks a lot for trying to ruin my life.

Love,

Me

Oh hi depression!

Hi there zoloft remember me? I took you when I was younger for awhile and trying to deal with my mom passing away well it seems that we are now meeting again, but now for a different reason, you see I have Rheumatoid Arthritis and well... It sucks. & makes me cry a lot and feel just.. depressed. I feel like my life has been stolen from me and it hurts to know I can't do things that I wish I could. Do you think you can help me out again? I feel like this might be a big issue and you may not be able to conquer it for me but my Rheumy insisted I give it a shot today while I started crying in his office. You see depression and all this stress is not helping when it comes to my flares. It's not good for me, so maybe just maybe you can help me get my life back on track?

Love,

Skye


So I had my rheumy appt today. The game plan is to switch to injectable MTX because I am starting to get very sick from the pills and it horrible, I pick up my MTX vial tomorrow and the boyfriends mom will be shooting me up with that once a week. I went back to my Enbrel sureclick since i'm in school and i didn't wanna have to deal with needed someone else to do it but i'm really hoping this MTX injection will work out better on my tummy. Besides that we covered a few other topics such as insurance changes, and switching to humira which i'm gonna hold off on for now. He prescribed me a anti depressant as you would have read above, let's see how that goes =/ Overall i'm exhausted just got home from school waiting for my food to cook then i'm off to bed and have school in the morning. Hope all of you are doing well.

Denied

Got the letter from SSD in the mail a couple days ago and was denied. Now currently in the process of submitting the appeal. I wish these things could just get done for me without putting much effort into them :( Ughhh. There reasons were that based on the medical evidence they gathered i'm responding well to treatment. Lol. Really? My Enbrel hasn't been working as good and I had to switch to two other newer pills that make me feel like throwing up, not to mention the nausea i've been getting every sunday from MTX. But oh no i'm doing great right? Let's jumble in the side effects from medicines in combination with my joint's aching, yep i'm doing great. *rolls eyes*

Decision was made...

So I called Social Security Disability to check on the status of everything and the woman told me a decision was made today and that I will be receiving info in the mail in a few days. I'm really nervous now.. I know many people have to apply more then once before getting approved & that could mean getting an attorney. =/ I'm trying not to get my hopes up but I can't help it. Now I'm gonna be glued to the mailbox for the rest of the week. Gaahhhhh.

Prednisone linked to acne?

I am been having problems with my skin ever since starting the steroids back up again as of a little over a month ago. It's not my face but my chest & back. At first I thought it was just my normal weekly breakout around the time I would have gotten a period (but don't because of my mirena) but it's been giving me problems since I started the prednisone! :( I hate hate hate this stupid pill! I'm taking myself off of it as of this week, since I STILL don't have a rheumy appt! I've been using neutragena acne body wash & this help a little bit to keep it from getting out of control but has not cleared everything up. It's so gross!

Has anyone else had skin problems with prednisone?

I'm on two other new meds as well that I started up around the same time but i'm pretty sure it's the steriods.

Meloxicam (1 a day) which I have been taking regularly
& Tramadol (up to 3 a day as needed) which I havent been taking.

I was taken off of diclofenac because it wasn't helping any.

Anybody else experience skin problems due to prednisone? I don't think it's stress because that's stayed the same and I haven't changed laundry soaps, I use tide free and clear.

HMO vs PPO

I'm glad to say that i'm happy the health insurance plan i'm getting through work will be PPO. Despite having to pay high co-payments to see my rheumy it's something i will GLADLY take so i don't have to deal with referrals anymore! Having to wait months at a time has been so stupid and drives me nuts!!!

Now looking forward to the switch on dec 1. :)

Winter Preperations?

This will be my first winter with my RA. I need to get a list started of what supplies I will be needed to make it through! I loveeee hoodies so i'm looking forward to picking up a few to keep me warm. I got one today from Target & I also pick up some gloves there today too, It came with two pairs for only $1.50! I wanna find some nice slippers for around the house and get a couple pairs of sweatpants too. I have an heating blanket that will be coming out of the closet once I find it also. What else do I need? Hmmm, I also will be needing a new planner for the upcoming year to track all my DR appt stuff.

What else do you guys recommend having for the winter?

Oh & I got the Flu Shot today from Target also, it was free since I work there and it was a special deal they have going on for Team Members. I was kind of iffy about it but after doing some research I figured it was best for me to get it.

Social Security Update

I received in the mail today more updates about my social security disability claim. It's now been sent to medical evalution and they mailed me a "fatigue questionnaire" ... there is only so much explaining that can be done about "fatigue" It consisted of about 10 question that ranged from daily activities to how many naps i take a day etc. I tried to be as detailed as possible when talking about how it effects me each day. I just hope I wrote enough for them. I mailed it out today. *crosses fingers* I'm glad it's coming along though, I know it's a long process.

Dealing with state disability is such a drag i've only received 1 check from them so far and it was only for august 21-26. So i'm still waiting on my next check that should be two weeks this time. I hope it comes soon. I get paid tomorrow but due to me not working so much my check is a dollar short of my car payment, thankfully it's not more then that. So i'm still able to pay it. God i'm so stressed! I was so tired today from working last night that I skipped classes today and went to work tonight because I just couldn't get out of bed this morning.

On a brighter note I called Humira to set up the patient support program and what not. I still don't have an appt set up with my rheumy yet because of my SLOW insurance ugh. && as of dec 1 i will officially be off my dad's insurance and on my own through work. It's going to be about 32 bucks each paycheck but at least I can continue my medications. My rheumy visits will spike up from 15 per visit to 55 freakin bucks. Ouch. Looks like i'll be seeing him as little as possible.

Feeling horrible, I hate you RA. :(