Comments on: I wasn't going to do this… http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/ exactly that Sun, 27 Nov 2011 19:32:57 +0000 hourly 1 By: lcosette http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2066 lcosette Thu, 07 May 2009 01:28:35 +0000 http://randombabble.com/?p=1685#comment-2066 Thank you so much for doing it! Big air hugs! Thank you so much for doing it! Big air hugs!

]]> By: NTE http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2065 NTE Wed, 06 May 2009 14:39:21 +0000 http://randombabble.com/?p=1685#comment-2065 I can relate to so much of this post. And because of that, all I can do is nod my head and offer you a heartfelt virtual hug (the kind that hurts the least). I can relate to so much of this post. And because of that, all I can do is nod my head and offer you a heartfelt virtual hug (the kind that hurts the least).

]]> By: wonder http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2064 wonder Tue, 05 May 2009 02:38:59 +0000 http://randombabble.com/?p=1685#comment-2064 Thank you. Thank you, thank you, thank you. Thank you.

Thank you, thank you, thank you.

]]> By: HawaiiKid http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2063 HawaiiKid Mon, 04 May 2009 21:53:07 +0000 http://randombabble.com/?p=1685#comment-2063 Aww I wish I was out there to help you guys. Even thought I don't have all of what you have, I feel so much pain coming from you. I hope that whatever you have you will overcome every single pang of doubt from doctors and keep fighting for what you believe in. *hug* Aww I wish I was out there to help you guys. Even thought I don’t have all of what you have, I feel so much pain coming from you. I hope that whatever you have you will overcome every single pang of doubt from doctors and keep fighting for what you believe in.

*hug*

]]> By: whatsername http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2062 whatsername Mon, 04 May 2009 00:37:26 +0000 http://randombabble.com/?p=1685#comment-2062 I got nothing but *hugs*. I got nothing but *hugs*.

]]> By: Sunday Blogaround « The Gender Blender Blog http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2061 Sunday Blogaround « The Gender Blender Blog Sun, 03 May 2009 16:45:33 +0000 http://randombabble.com/?p=1685#comment-2061 [...] Blogging Against Disabilism: “I wasn’t going to do this…” [...] [...] Blogging Against Disabilism: “I wasn’t going to do this…” [...]

]]> By: Maija Haavisto http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2060 Maija Haavisto Sun, 03 May 2009 07:28:42 +0000 http://randombabble.com/?p=1685#comment-2060 It took me ages to be able to say the name of my illness out loud, not sure why. I just used to say "I'm sick" or mention some specific symptom, like "I can't do that because of fatigue/fever/muscle weakness". Is there a possibility that you might have CFS/ME in addition to the fibromyalgia, instead of lupus? CFS/ME is extremely common in fibromyalgia, and sometimes there may be elevated ANA titers suggestive of lupus (in about 10-20% of patients). Sadly, it isn't something that doctors take more seriously any more than fibro... But it can be treated. I know this is kind of OT in terms of BADD, but I'd recommend looking into low dose naltrexone. It's used in the treatment of autoimmune diseases, but also fibromyalgia and CFS/ME. I had progressive CFS/ME which was getting quite severe, and LDN saved my ass. It can help pain, fatigue, mood and many other things. Another good thing is that there are usually no side effects. As for trichotillomania, have you heard of inositol? It is a supplement used for anxiety disorders, OCD and trichotillomania. There are several studies showing its efficacy. You have to take fairly large doses (up to 20 grams a day), but it's affordable, and side effects are extremely rare. It shouldn't be used with some mood stabilizers (e.g. valproate), but if you aren't, I'd really recommend looking into it. Sorry for all of these suggestions (perhaps you've already heard of them, perhaps you've tried inositol), but besides being a medical writer I'm also someone who's disabled, but significantly less disabled than I'd be without meds and supplements. It took me ages to be able to say the name of my illness out loud, not sure why. I just used to say “I’m sick” or mention some specific symptom, like “I can’t do that because of fatigue/fever/muscle weakness”.

Is there a possibility that you might have CFS/ME in addition to the fibromyalgia, instead of lupus? CFS/ME is extremely common in fibromyalgia, and sometimes there may be elevated ANA titers suggestive of lupus (in about 10-20% of patients). Sadly, it isn’t something that doctors take more seriously any more than fibro… But it can be treated.

I know this is kind of OT in terms of BADD, but I’d recommend looking into low dose naltrexone. It’s used in the treatment of autoimmune diseases, but also fibromyalgia and CFS/ME. I had progressive CFS/ME which was getting quite severe, and LDN saved my ass. It can help pain, fatigue, mood and many other things. Another good thing is that there are usually no side effects.

As for trichotillomania, have you heard of inositol? It is a supplement used for anxiety disorders, OCD and trichotillomania. There are several studies showing its efficacy. You have to take fairly large doses (up to 20 grams a day), but it’s affordable, and side effects are extremely rare. It shouldn’t be used with some mood stabilizers (e.g. valproate), but if you aren’t, I’d really recommend looking into it.

Sorry for all of these suggestions (perhaps you’ve already heard of them, perhaps you’ve tried inositol), but besides being a medical writer I’m also someone who’s disabled, but significantly less disabled than I’d be without meds and supplements.

]]> By: kcjones http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2059 kcjones Sun, 03 May 2009 02:11:01 +0000 http://randombabble.com/?p=1685#comment-2059 "I have to do this b/c it makes me feel less useless." This, exactly, is how I also feel. “I have to do this b/c it makes me feel less useless.” This, exactly, is how I also feel.

]]> By: steve http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2058 steve Sun, 03 May 2009 01:35:44 +0000 http://randombabble.com/?p=1685#comment-2058 what Anna said You are amazing and you, the guy, and the kid have all my love and support (even if it is a day behind!) what Anna said
You are amazing and you, the guy, and the kid have all my love and support (even if it is a day behind!)

]]> By: annaham http://www.randombabble.com/2009/05/02/i-wasnt-going-to-do-this/#comment-2057 annaham Sat, 02 May 2009 23:36:44 +0000 http://randombabble.com/?p=1685#comment-2057 You are amazing. *gentle hug* You are amazing.

*gentle hug*

]]>