I rarely, if ever, blog about my health. I've learned the hard way in online situations-past that generally when people ask "how are you doing?" they want to hear "fine, fine, just fine..." in return and move on to the more happy, superficial things in life. That's fine by me. I don't need to be told twice. And it's not really fun to talk about anyway. But I just finished filling out a mega-stack of forms and feel very "blah" about life right now.
I receive SSDI based on a list of illnesses so long as to be comical. Just call me the queen of acronyms and move about your day if this sort of thing/talk bores you... I have: Lyme Disease and/or Chronic Fatigue Syndrome (CFS has yet to be completely ruled out after over 10 years of being diagnosed with it, following a positive Lyme test in 8/00), Fibromyalgia (FMS), Neurally Mediated Hyopotension (NMH), irritible bowel (IBS), pernicious anemia, acute gastroenteritis, endometriosis, and most likely Polycystic Ovarian Syndrome (PCOS). I have been sick since practically 2 weeks after our wedding, and have been unable to work since the early fall of 1996. I've received a small (less than our car payment) SSDI check (based on what I paid in from 15-24) since 1998. I do pay taxes on that disability income as well. So if you're a rabid Republican that thinks I shouldn't receive this kind of government assistance, please step in the line to the right and rain on someone else's parade. You're in my living room now.
Anyhoo, today the dreaded packet arrived in the mail. The packet all SSDI recipients dread. The four-year review. A literal book of forms where you get to say "no my life hasn't changed and yes it still sucks". Where you get to iron out in great detail all of the gory, depressing things that actually fill your daily life. Things you don't blog about. Things you try to hide from your own husband as much as possible just because you don't want anyone else on the planet to have to deal with it. Things a total stranger, that doesn't know a thing about you, gets to rubber-stamp and toss in a pile making you yet another number without a face. Things that don't go away in nine months with the joy of a baby in your arms as you emerge victorious on the other side.
I don't complain often. I don't have it "bad". I have a wonderful life. I know that. I'm blessed with an amazing marriage, a supportive family, terrific friends, a beautiful home, and something that isn't remotely terminal. Just chronic. But taking over two hours out of my day to iron it all out in such a fashion that it's not even "real" to me anymore is beyond depressing. It's begging for money. That's what it all boils down to. Making myself sound "bad enough" that my benefits won't be cut -- and then realizing I really am "that bad" in order to need them in the first place and continue receiving them. What an incredibly degrading, defeating day. Thank goodness "Will and Grace" is on. I need a laugh.
Robyn, just remember that we are all here for you, regardless of anything that life throws your way. Your strength absoultely amazes me.
¤ ¤ posted by Sara on December 13, 2001 at 11:03 PM ¤ ¤
*HUGS* It sounded like you needed one. You know where I am if you need to talk.
¤ ¤ posted by heather on December 13, 2001 at 11:05 PM ¤ ¤
Robyn, I am so sorry yesterday was that "dreaded" day. I'm sorry that you have to deal with this EVERY day. And most importantly, I'm sorry that long ago in a land far away there were a group of evil hateful people who "claimed" to be friends but couldn't deal with the harsh realities that being a real friend brings sometimes. Whether you know it or not, I have noticed a difference in you since the "old days". You're not as open as you used to be. I hate that. I hate that they did that to you. I hope you know that when I (and a few others) ask, "How are you doing?" we really want to know. Tell us. We love ya kiddo.
¤ ¤ posted by Tara on December 14, 2001 at 08:57 AM ¤ ¤
{{{hugs}}} you are an incredible person and i so admire you! :)
¤ ¤ posted by susannah on December 14, 2001 at 09:57 AM ¤ ¤
Your story overwhelms me. I am really thinking about your right now, and hoping that your holiday season is cheery and this packet goes *poof* out of your brain! :) Thank you for everything you've shared with me, too. {{{{hugs}}}}
¤ ¤ posted by kristine on December 14, 2001 at 12:10 PM ¤ ¤
Ugh. I applied for SSDI for Jason because he was born with a club foot (surgery at 4 mos., 7 mos. & 8 mos. and probably again soon) because my Ortho doc recommended it. While he does qualify for "Chronically Ill & Disabled Children" benefits, he didn't qualify for SSDI (which is ok with me, I only applied to cover surgery bills). Those forms were HELL. I have a hard enough time recapping my medical history for a new doctor, I would hate to feel so "faceless" like that. Sorry to hear you had a rough day.
¤ ¤ posted by Christine on December 14, 2001 at 01:03 PM ¤ ¤
No doubt! Anyone that thinks going for disability is the "easy route" has honestly never looked at the forms... And I must say, literally making less than 1/5 of my former monthly income was a picnic for the ol' budget. Yep, we're livin' large... ;-) That must have been so overwhelming to be going through all of that in the midst of surgery -- much less surgeries on your child. I'm truly sorry you had to deal with it, too!
¤ ¤ posted by robyn on December 14, 2001 at 01:10 PM ¤ ¤
I'm sorry that you're having to contend with your diversity of illness (never let it be said you're prejudiced towards one thing - smile). However, It's good to see someone able to take advantage and get help from something like SSDI. As a deaf person, the only help I ever got was from Texas Rehab who would've paid for all four years of college at a Texas public school. Alas, I went to TCU for one year and then moved to Washington, DC and finished college at American University.
I'm blessed with parents who had the means to pay for 11 years of speech therapy and hearing aids that only last for a few years. I've seen too many sad stories of parents not helping their children who have disAbilities of any type.
Robyn - in a way I know how you feel. I constantly never feel well and have been to doctor after doctor and to test after test. Nothing positive. That's a good thing and a bad thing. Bad thing because I think they think it's all in my head. Bah.
Don't mean to go off in a long rant. It's OK to be upset and frustrated. They're your problems. Sure, they can be smaller than others'... but they can also be bigger.
Here's to lots of good days and very few rough days in 2002.
¤ ¤ posted by meryl on December 29, 2001 at 06:56 PM ¤ ¤
I just found this entry by way of the "2001 Wrap-Up" and it gave me a sense of peace because I am in the process of applying for SSDI for my own list of reasons. I appreciate the honesty and the fact that you showed a piece of yourself that you generally shield from the public, and, apparently, your friends and family as much as possible. I admire your strength and courage and hope to be able to model it as I go through the process.
I have one request/comment pertaining to this subject: one of my conditions relates to my vision, and it's very difficult for me to read the small text on your site because you have overridden the ability to resize the fonts through the browser. I hope that you will consider making a usability change that may be helpful to other readers as well. It would be greatly appreciated.
Thanks!
¤ ¤ posted by spazgirl on September 16, 2002 at 08:07 AM ¤ ¤
God has given you a gift to lift those around you up, in my opinion. What God gives the evil one tries so hard to take away or at least throw a big fat monkey wrench into the middle of. I admire your preserverence (Sp) and am inspired by your cheerful way on a daily basis. I also have some issues that plague me chronically (basically asthma) and it can really make one look bad at the office with as many days as one has to miss at times...but people like you that fight on and find ways to count blessings are inspirational to me. Thanks!
p
¤ ¤ posted by peat on September 16, 2002 at 04:19 PM ¤ ¤
I have a 1-grain taste of what you are going through with the forms. With two kids in college, I have all the FAFSA forms for the two of them as well as the local college forms to deal with. Yeah, I have 1-grain and you have the beach.
Stay positive - that has been what has helped my brother-in-law. He just passed the five year checkpoint after a t-cell transplant for leukemia. We have been told by experts that five years after the transplant is a good indication that leukemia has been remissed. He claims that the rallying of friends and family helped him more than all the medication and I believe him. Know that you have good e-friends and from the sound of it you have a great hubby to help you through this; and we all know you will get through it.
¤ ¤ posted by Bill on December 15, 2002 at 06:52 PM ¤ ¤
Someone once told me, if I wanted to get better to reach out and help someone else. I never really understood what that meant until I started trying to do just that. It gave me reasons to find ways to live with the pain I live with daily in order to push myself to help someone else and it gave me reasons why I had importance in this life despite what others might think.I may never be cured but my life is better for it.I had to take controll of my life with knowledge.We all have lemons (disabilities of some kind), some of us just needed to be shown how to use them to make a life for ourselves.With all the "shit happens" that comes my way, I use it to cut through clean to the shine. I found I have had alot to be thankful for. For the rest of the BS people have put in my way, welllll I have some cleaning up to do....got lemons, join me in the fight to make things better for all of us. Write to all you think can who may help you and your plight, doctors, lawyers,mayors, congressmen, senitors, the president and the pope if need be. Encourage others to do the same.Knowledge is your best friend, in your fight towards getting better. It will open doors, then all you have to do is go through them.
¤ ¤ posted by Angel on January 28, 2003 at 03:26 PM ¤ ¤
Hey Robyn... Don't know if this is the Robyn I think it is.
I have a blog online where mainly my health is the main topic. Seems if I write about other things I get some crap from people and family. Well, I keep that stuff to my private writings then so there! ;) I'm doing very well although the herxheimers are evil!!! :-P Hope everything is going well for you. I will be reading and cheering for you. :)
¤ ¤ posted by Jen on April 1, 2003 at 01:49 PM ¤ ¤
*your IP is matched when you comment -- and I reserve the right to edit/delete any comments I do not feel are "appropriate" for my blog and/or would not want said in the presence of guests in my own home
I have: Lyme Disease and/or Chronic Fatigue Syndrome (CFS has yet to be completely ruled out after over 10 years of being diagnosed with it, following a positive Lyme test in 8/00), Fibromyalgia (FMS), Neurally Mediated Hyopotension (NMH), irritible bowel (IBS), pernicious anemia, acute gastroenteritis, endometriosis, and most likely Polycystic Ovarian Syndrome (PCOS). I have been sick since practically 2 weeks after our wedding, and have been unable to work since the early fall of 1996. I've received a small (less than our car payment) SSDI check (based on what I paid in from 15-24) since 1998. I do pay taxes on that disability income as well. So if you're a rabid Republican that thinks I shouldn't receive this kind of government assistance, please step in the line to the right and rain on someone else's parade. You're in my living room now.
Anyhoo, today the dreaded packet arrived in the mail. The packet all SSDI recipients dread. The four-year review. A literal book of forms where you get to say "no my life hasn't changed and yes it still sucks". Where you get to iron out in great detail all of the gory, depressing things that actually fill your daily life. Things you don't blog about. Things you try to hide from your own husband as much as possible just because you don't want anyone else on the planet to have to deal with it. Things a total stranger, that doesn't know a thing about you, gets to rubber-stamp and toss in a pile making you yet another number without a face. Things that don't go away in nine months with the joy of a baby in your arms as you emerge victorious on the other side.
I don't complain often. I don't have it "bad". I have a wonderful life. I know that. I'm blessed with an amazing marriage, a supportive family, terrific friends, a beautiful home, and something that isn't remotely terminal. Just chronic. But taking over two hours out of my day to iron it all out in such a fashion that it's not even "real" to me anymore is beyond depressing. It's begging for money. That's what it all boils down to. Making myself sound "bad enough" that my benefits won't be cut -- and then realizing I really am "that bad" in order to need them in the first place and continue receiving them. What an incredibly degrading, defeating day. Thank goodness "Will and Grace" is on. I need a laugh.
