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.

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.

wanting to throw in the flag

I've been angry, depressed, exhausted, sad, hurt, tired, over worked and more lately. I've been doing nothing but arguing with my so called father and dealing with an out of control, attitude, druggie brother here at home. Will it ever end? I wish I could move out right this minute. I had to go buy a new door knob with a lock on it just to keep my 17 year old brother out of my room because he takes my shit. My father hasn't been much of a father and everything about him drives me crazy as if he is trying to make my life even worse. Now I don't want to sit here and write a sob story and feel all sorry for myself but jeez I'm sick of everything!

My pharmacy called this morning. They have been trying to work on getting me a refill authorization for my Enbrel from my DR offices but have been getting shuffled back and forth so I called my Primary DR and insisted the lady check my file because she was saying she had no paper about it. Well I hope she felt like an idiot because she did find it and because of her I may not get my medications on time now. Thank you, DR office lady for not knowing HOW TO DO YOUR DAMN JOB. I'm so sick and tired of this bullshit. & my "Father" decided to rub in my face about how I won't have insurance by Dec, Thank you for the reminder you ass hole.

I just need to cry sometimes

Last night I was hit pretty hard with some depression and frustration. The new health care bill for America was passed yesterday & while there are some pro's and con's about it, for me, I will benefit from it. I still need to find a good job with full medical benefits before December since my dad is retiring, so while it's changed to age 26 to be covered under your parents, this won't apply for me. The insurances won't be able to deny for pre-existing conditions either but this won't take effect till 2014. With that said I was on the phone late last night (around 12am) crying for like 30 minutes to my dad about all these feelings I'm going through. I haven't been looking for a better job and I know I need too and I finally figured out what is keeping me from doing so.. I feel like by me taking that step is me admitting that I have a real disease for the rest of my life. I'm just so afraid of the future, everything. I feel like nobody understands unless they have RA. && that some of the people I care about see me as "complaining" when in fact it's not, I'm just doing the best I can to deal and vent about what I'm going through. I have a selected few, very few, people who actually listen to me. I just wish more of them would be like that. The person that I thought would share more excitement with me today that Enbrel got approved finally didn't all they said was "good" and that was it, didn't even speak to this person after that today. Thankfully I had two other people that showed some excitement for me and my best friend said "does this mean I get to poke you?" lol she's been waiting because she offered to help me with my first shot. <3 I just don't know anymore, I try to be strong but sometimes I'm just so scared and wish that someone would help me. I feel like I can't do it on my own sometimes and the burden of dealing with doctors is so overwhelming. It's got to get easier then this... =[

On another note, I'm waiting to hear back from the pharmacy that will be delivering my Enbrel. I should have it by this week. I wanted it to come Thursday but I didn't hear back from them today, so that'll probably push it back a day.

I just hope I can find the strength to pull through this.

venting time

I've always felt like my life was a book. *cue music here* I told myself for many years that I'd love to have someone put my life onto paper. As times passes the urge to have it get done only becomes stronger as I continue to face challenging life events. I'm not the best when it comes to writing but I've thought about doing it myself. I just know I wouldn't be able to sit for hours on end writing nor do I even know the slightest bit about writing a book.

From losing a mother, heartbreak, a car accident, struggling with school, thinking I found love again, & more heartbreak, & becoming diagnosed with a chronic pain disease. It would seem to one that my unfortunate events never seem to fail me... of course with one there always comes another. I've had my fair share of happiness mixed into the despair. I think I've experienced what one would call "hitting rock bottom" but this ceases when a bigger event seems to come my way. Yet here I am, still breathing, still living and trying to conquer everything that gets thrown in my direction, one hit after the next. I like people to believe I'm strong, but sometimes I get tired of pretending to be. What's wrong with letting it all out and crying? I get people asking me "how are you?" a lot lately & quiet honestly I just want to scream I'm horrible, terrible, no... I'm in absolute disbelief on why bad things have to happen to really good people. Is this the depression starting to take over? I don't know whether to feel anger, sadness, disappointment or maybe all three. Can't I just crawl in a hole for awhile & stay there? I'm not asking for forever, I'm just asking for awhile, or at least until I know I can stand up and fight back. Don't get me wrong, I have friends & I have a Dad, & even a fantastic step mom, I have an "almost" significant other If I can call her that who's been here through it all over the past 7 years. Yet here I am, still afraid more then ever of what's to come next.

What is it that's missing?

I went to the cemetery a few days ago & told my mom I have RA. Is that silly? I always wonder what things would be like if she were still here. I miss her. I keep struggling to find the strength inside of myself. I'm not dieing right? At least it's something that won't kill me? Is that it? How is that supposed to make me feel better? It doesn't, I mean It makes me laugh thinking about RA in that way, As if I'd rather suffer from this insane pain I get, these stupid "flares". I didn't ask for this, any of it. I can only pray for a cure one day, or wait patiently for that one medication that will help me get my life back on track. I want my happy ending, I want to reach the light at the end of this long tunnel.

"Her feelings she hides, her dreams she can't find
She's losing her mind, she's fallen behind
And she can't find her place, she's losing her faith
She's fallen from grace, she's all over the place, yeah"

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.