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!

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.

Pills. Pills, ...Pills!

It's offical i'm now a walking drug store! I left out the Enbrel in the photographs, don't forget that!

I went and saw my rheumy today. My white blood count still isn't where it should be but we are going to hold off on seeing a hematologist for now and just monitor me which reminds me I forgot to get a standing order for bloodwork crap... i'll have to call them on monday. So he wants me to throw away diclofenac & darvecet & now has me on two new ones, Meloxicam 15mg (1 a day) & Tramadol 50mg (3x a day as needed) let's hope this brings some relief my feet have been killing me constantly. My pill bag is offically jammed pack now with bottles. He still has me taking pred 1 time a day for now as well. Blahhhhh. It's depressing I know.

On a better note state disability was processed so i'll be starting this soon so that's good news. Oh & for getting two prescriptions I got 2 $10 giftcards from target so I thought that was pretty good. They seem to have them in the weekly ad every other week now :D So thats pretty cool at least I can get SOME money back. Jeez.

low white blood cells

So I went to my Rheumy yesterday, I have bad news :'(

ready for it?

...


I have been ordered to stop all my medications for minimum of two weeks right now. Why? well the past three blood tests my white blood cell count has been to low, dangerously low =/ this last test the end of june showed it was worse then the first. So the rheumy has to do this as a standard procedure to see if it's the Enbrel or MTX causing it which is extremely rare so he doubts it but the next step if it isn't the meds is to send me to see a hematologists (a blood Doc) to figure out whats going wrong or what else i might have on top of RA and Sjogrens.

I am so scared of what else I might have. & not having MTX or Enbrel for TWO weeks is going to be hell i'm sure. See i was already starting to feel sore even with both those so I had a feeling maybe the Enbrel was starting to stop working anyways :'( So I go in to Re Test in two weeks and he is testing me for Lupus also because I have a feeling I might have it. I've been pretty good so far with my "feelings" The thing is that I have been getting these sores on me and i dont know what they are from but my arm is starting to get more of them, well he is puzzled and doesn't know what they are from i've tried neosporin on them as well as cream, nothing works, they itch too, and even when I was on antibiotics for my ear infections and UTI I has this previous month it didn't clear them so he prescribed me the strongest antibiotic he could that he said he gives to people who can't heal themselves =/ It was 20 bucks for 7 pills I have to take for a week, so im hoping that clears up but according to google they may be a side effect of Lupus. So I guess we will start getting some answers in two weeks. I have so many thoughts running through my head I just want to know whats wrong with me. This explains why I've been getting sick a lot and having infections over the past few months, but I don't want to deal with another disease on top of the two I already have :(

Worst day ever yesterday, and I fear this is only the beginning.

More Enbrel Updates

I called my PC Doctor office today & was told to call back mon/tues because by then they should have an approval hopefully from insurance for Enbrel. So i'm keeping my fingers crossed that this will finally get moving! I received this Enbrel travel kit in the mail the other day, 2 of them actually. I posted a pic. It was free, it's a mini cooler & came with a booklet that teaches you how to self inject and just information and a sharps container and alcohol wipes, this will come in handy as I plan on going to FL for my spring break next month!! So i'm not sure if i'll have to take my Enbrel injections with me or not depending on if I start by then which i'm hoping too. I just need to get a thermometer to make sure it says cool enough on the plane ride. I'm really excited about my vacation, I haven't been out of California is about 3 years so it will be nice to get away and have some fun. My next appt with my rheumy isn't until the end of April which is more then 6 weeks from the last time I saw him ugh but they are booked. Besides that I've been feeling alright, still get sore & although I do have pain meds i've been trying to not take them if I really really don't need too. Anyways off to bed I think, feeling sleepy and I have work in the morning.

more progress

So I got a voice mail today from Erica over at my RA office. She finally got the tb results and my rheumy approved the OK for the prescription for Enbrel FINALLY! but now... what did she say? She has to FAX the prescription over to my PC Doctor who has to approve it THEN send it off to insurance for approval *sigh* at least i'm getting closer and closer I guess. I'm going to call my PC Doctor office next week to check up on things. I never thought it'd be this much work just to get on this medication =/

I've been feeling like complete shit lately. Hours are picking up at work again now that the scheduling issue's are fixed. So i'll be working about 30 hours these next two weeks. The good news is they are longer shifts 7-8 hours from now on so I will get more days off instead of working crap 4-5 hour shifts. Let's see how this will make me feel =( But gotta make money to pay those bills. Ugh.

Tomorrow is my nieces 1 year birthday party so i'm looking forward to that & spending some time with my family, let's hope i can have enough energy to get through the day. I'm so tired, I'm going to sleep now, just got home from laser tag with friends which was fun.

fax machines

so I dealt with Dr offices this morning and now know how unreliable fax machines are. the good news ? I'm able to make another appt with my rheumy the bad news ? still no progress for enbrel. I was so frustrated I was crying earlier from now on ill drop paperwork off at the two offices myself. I'm posting from my Android phone cause I downloaded the Blogger app so I hope this works !

Dear DR Offices

Dear Doctor Offices,

I hate you,

That is all.

>:[

Rheumy Appt Overview & Disney trip

My Rheumy Appt went well. I will be starting Enbrel, but there are some tests I have to take first. So i got more blood drawn yesterday to make sure I don't have Hep, and then Monday I have an appt to test for TB, after that's finished and my primary care docter faxes my rheumy the results I have to call him and let him know it's done so we can put in to get me started on Enbrel. I'm excited. He said he planned on taking me off pred but since I was in a lot of pain he decided to keep me on it a little longer until i can start Enbrel and he also gave me a prescription for a pain killer, the cool thing about them is that they are hot pink!! I posted a picture :) so i just have to take it as needed. I got copies of recent blood work & doctor notes that I am going to start asking for every time, so I'm going to get a file system going on to keep track of everything.

In other new; I got a new phone the day before yesterday! The HTC Droid Eris for verizon, I was ready for an upgrade and decided to stay with verizon. I love it! My first day of creative writing class was monday and that went well! & on tuesday I went to disneyland!!! & the good thing? I wasn't sore that day! I had so much fun!!! Here are a few pictures :) I love that I have a annual pass and can go whenever!


Yes i love love love alice in wonderland!! & was super excited that they finally have merchandise you can buy now since the moving is coming out! :) Anyways it was lots of fun and my feet didn't start hurting until the end, the weather was nice too! Good times :)

Can the 24th come faster?

Woke up to a phone call from Enbrel. They spoke with my insurance and the co-pay would have been $100 for each refill, so I will be covered under there support program and I won't have to worry about paying anything until after 6 months which then will only be $10 bucks. :) She explained to me how my medication gets delivered to my house on whatever day i want and a certain time in a climate controlled package! I thought that was pretty cool, she also told me 1 time a year I could pick it up from a pharmacy, let's say if I'm out of town. So now I'm just waiting for all my information to come in the mail.

I'm counting down the days until I see my Rheumy on the 24th this month. I've been so sore lately & the cold weather off and on hasn't been helping. I've been sleeping in bed a lot this past week I think I got about 11 hours of sleep today and that still doesn't feel like enough! I still feel exhausted but I have to work 5:15p-10p tonight & be up early tomorrow again for work at 8am. I'm not off until saturday. I do have FMLA now for work so if I feel like I really can't I can call out without a problem but I really need the money so that's something I have to try not to do :( But the FMLA allows me to miss up to 7 days a month because that's what I estimated I'd need tops for now for up to 8 hour shifts. This protects me from getting fired for calling off to much or if I need to leave work early.

I've been reading lots of Blogs lately about other people who have RA, so many interesting and helpful entries I've found on RA Warrior (dot) com I even order a book called What to Do When the Doctor Says Its Rheumatoid Arthritis, by Harry D Fischer, MD and Winnie Yu. Found here so I'm looking forward to receiving that in the mail.

Enbrel

So i've been reading/hearing a lot about a drug called Enbrel so i've been more curious about it & how it works. I decided to call them & see if I could qualify for the Enbrel Support Program & I did, the lady on the phone was very helpful & the card should be arriving within the next 7-10 days. I will also be receiving the complimentary resource kit. I was curious about how much my insurance covered so i gave them a ring but they couldn't give me an exact amount all they said was 20% was what I would have to pay & even that is still to expensive for me. I figured i might as well take advantage while i'm still covered on my dad's insurance to try this out & the support program Enbrel offer's is good for up to $4,000 each 6 month period and $10 out of pocket after. So with that in combination with my insurance it sounds pretty good. It's kinda scary knowing it's something i'll have to self inject but i think i'll be able to do it. I'm glad my appt is coming up with my Rheumy so we can discuss this drug and i can see what he thinks about it. The people over at the Enbrel support line have my Rheumy's info on file already so i just have to tell him i already signed up and what not. I'm not sure how it's works in combination with the others medications I'm already on so these are all things I need to find out.

Anyone who happens to read this and is currently on Enbrel please leave some feedback on how it's working out for you!

well hello there

This comic is by a woman named Sara Nash, Illustrated by Jane Samborski. She mas many more that can be found here I find many of them amusing and fantastic! I wanted to share them in case some people haven't seen them yet. I know I only have a few followers so far but in the future I might end up getting more. :)

I've recently been talking to 2 girls around my age who also have RA so it's nice to have someone to connect with and share experiences and tips with while I deal with this disease. I hope that they will turn into friendships. I wish there were more support groups in my area. So far I've found one but most of the meetings they have been having are about an hour drive. I do plan on going to at least one cause it'd be nice to talk to some people in person. & on the meetup website they seem very welcoming!

My Appt with my Rheumy is coming up soon, Feb 24th, & on the same day I'll get my blood drawn again. I plan on asking him more questions. Maybe he will know some support groups in my area, I also want to know more about biological medications & I'm looking forward to getting off Prednisone. I've still be sore every now and then but he said it would take a few months before the Methotrexate kicks in which is why I'm still on Prednisone.

My depression is off and on lately, just trying to deal with life. Some days are better then others & I cling to the people/things that do make me happy. It's what keeps me sane really. I've been spending more time with friends & I think it's been helping a lot. So that's good at least. I'm not asking for things to get better, I just want it to all be stable.