Tuesday, March 23, 2010

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.


  1. I don't know if this will help or not, Skye, but I can tell you that I have now gotten to the point when I'm not crying so often at totally random moments about what's happening to me. And doing the injections now doesn't seem like quite such a big deal. Some friends have been totally there for me every step of the way, others have helped somewhat, and one friend who I've known for over 20 years and who knows about my RA because I asked him to ask a doctor friend of his who has RA some questions I had about meds has yet to ask me a single thing at all about it or me. Nothing. Not "How are you?" Not "I'm so sorry this has happened to you." Nothing at all. Needless to say, I can't say I consider him much of a friend anymore. But so it goes.

    There are good friends out there for you, and with the help of those people and your family, you will get through this. You are strong, and I can see that in the words of yours I've read on this blog. You'll undoubtedly have more moments when you will cry, and moments (like when the Enbrel got approved, or at your niece's birthday) when you'll be happy and you'll smile. And I'll be so happy to hear about those moments. I'm here for you, even though we've never met. Know that.

  2. Skye,

    I am sorry to hear you are feeling like this. No one understands because they don’t know and unless they know, they can’t understand. It makes me sad sometimes that I feel alone because I can’t always get my husband, my mother or even my sisters to understand. All in all, it is my sisters who try really hard to understand. My husband tries, but he doesn’t really get it. There are people who will try hard because they love you to understand, but do not expect them to completely understand. Find out about local support groups in your area and become involved. You’ll make new friends and you will find a support system that truly gets it.

    It is okay to feel sorry for yourself once in awhile but focus on not letting it consume you. Your life is not over and RA is not a death sentence (even though I know that some days it can feel like it). Great news on the Enbrel! I hope it works well for you. I take Humira and I have noticed a change and a decrease in my RA symptoms. Unfortunately because I also have Fibromyalgia so the muscle pain seems to stand out more than the joint pain these days.

    The health insurance issue will figure itself out. Your employer’s insurance (when you start working) will cover you provided you had coverage prior. I came across this but it was eventually resolved because I had coverage the whole time (through my previous employer) so focus on staying covered and if you are school, you can always try student health insurance.

    Good luck.


  3. Glad you were able to get the Enbrel approved. Its very frustrating to find the insurance companies believe they know better what will work and what won't. I was on it for a few years and it works amazing! I gradually stepped off of it because my RA was in remission and I no longer needed it. I hope things begin to improve for you! Also for your insurance needs...you (or your father)should be able to cobra your insurance after it ends for a while to help cover the gap before you start to recieve your own benefits. (you'll have to check into that...not sure how it works when its discontinued because of retirement, but I would assume it would be no different)

  4. Skye, sorry you're having to deal with all of this right now. Along your journey with RA, you will discover strength you never knew you had. You will get through this, trust me. Will it be easy? Hell no, but each experience you will get a little bit stronger and tougher.

    As for your friends, people just don't understand what we have. And most of them don't care to learn about it. I have a lot of friends, after being diagnosed, I was disappointed by some but surprised by others. Don't let it eat at you, if they don't want to help you or understand what you are going through, they really aren't a friend anyway.

  5. Laurie- I can't believe that friend of yours =( I guess now is when we realize who is there for us and who isn't. Thank you so much for your kind words <3

    Lana- I think you are right, I should expect them to completely understand because the truth is they never will because they aren't going through the same thing that I am. I just hope the people I love and care about will try there best to be there for me. & I do need to be reminded sometimes that my life isn't over even though RA makes me feel horrible some days. That's great that you've noticed a change with Humira also :) As for the health insurance, I haven't looked into anything about student health insurance so i'll add that to my research. Thank you.

    Michelle- Thank you, I don't know what Cobra is but I will look into this.

    Tharr- I know you are right, this will only help make me a stronger person. I just wish it wasn't happening to me sometimes. & that's true about the friends… i'm happy this disease is invisible on the outside but sometimes I think if it weren't then maybe they'd get a clue about what was really going on.

    I'm so grateful to have found at least a few people here that I can talk to and relate too.