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 A pain free day is wishful thinking..

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PostSubject: A pain free day is wishful thinking..   Wed Sep 28, 2011 7:54 am

Let's see where to begin...
I guess today is just a sucky day to begin with.
I woke up feeling icky and I lately I've been feeling worse and worse everyday.. So I don't know whats going on, but it is worrying me quite a bit. Anyways, I have been having issues with getting financial aid so I can get my surgery so I can start to feeling better, but no such luck, I guess they like seeing people suffer, because I told them I needed this surgery and I have been calling the doctors daily whining/complaining in their eyes, but I am soo tired of hurting and nobody seeming to care at all. No more pity party, I hate hiding my pain but I can't see another way, the people around me are supportive to a point, and I hate burdening them with this, I mean it is my fight. So the advil and the hot packs and the muscle relaxer and the Diamox and the warm showers aren't working and I have tried the herbal remedies and the teas and so far a big lot of NADA! I am so frustrated I could rip my hair out. It's been almost a year since I got diagnosed and I know that's not an eternity or anything but geez I'd kill for a pain free day or hour ya know? I am sorry I tend to complain when I am in pain and today has just sucked. Has anyone had experience with the FA office or when getting financial aid is there anything that can maybe help me help them move a tiny bit faster? And another question before I go and chop my head off for some relief, I seem to get a cold or the sniffles right around the same time every month and then I get an LP and my pressures really really high, is that just me and I am going crazy, cuz I just got a cold/sore throat like two days ago, and I had just gotten a cold exactly one month ago and then got an LP and the pressure was 48.. So maybe I am being paranoid I don't know. I hope all is well in the land of the other sufferers of IIH Smile

Sorry for the rambling.
In too much pain to handle at this point.
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PostSubject: Re: A pain free day is wishful thinking..   Wed Sep 28, 2011 6:21 pm

Laura hug I am so sorry that you are having a rough time of it, and I'm not surprised you are so fed up and low with it all, which could account for you being very susceptible to colds and things so often. Stress and depression increases your cortisol levels and it is this that then lowers your immunity. Read more Cortisol and Stress: How to Stay Healthy

Here is the link to resources recommended by the IHRF for people who need assistance with medical aid [You must be registered and logged in to see this link.] and also here is the link to Advocacy for Patients with Chronic Illness, Inc

Hopefully you might be able to get the help you need via these, so you can get the right treatment and be able to get on with life. Let us know if they have been of help, and we really hope they will.

You need not apologise for rambling, this group gives you a voice and you have a right to be heard no matter what it is. You are right to feel the way you would I think many of us would and have been the same with this kind of experience.

Heidi hug
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PostSubject: Re: A pain free day is wishful thinking..   Wed Sep 28, 2011 7:05 pm

Laura, I'm sorry you're having such a crummy day! I can only imagine how frustrated you must be, and I don't really understand why no one will go ahead w/ the surgery. Ohio has a HCAP (Hospital Care Assistance Program) for low income, but I'm not sure what's available in Oregon. Have you applied for Medicaid or Social Security Disability? I guess it depends on your income and insurance..I know jumping through the hoops is a complete pain, especially when you're suffering, but it can be beneficial in the long run.

I understand you're having a lot of pain, but has anyone been monitoring your vision? My neuro-ophthalmologist is usually my best advocate..if my vision is affected, he sends me right to LP and neurosurgeon. Unfortunately, LP isn't something that should be used as an ongoing treatment and has it's own side effects, so you have to be careful. I do get a runny nose when my pain is worse..you can also leak spinal fluid, so may be something you want doctor's to check. Allergies, sinuses, menstral cycles, weather, etc can all affect pain levels, so just keep that in mind..leaking fluid is really rare.

I think we all have these days..it's hard to cope w/ things when you can't get any relief. I know it sounds silly, but remember to breathe and try to relax as best you can. I tend to hold my breath when in pain and it just makes things worse. All you can do is keep doctor's informed..maybe ask for another referral if you don't think they're acting in your best interest. Hang in there!!!

Take care,
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PostSubject: Re: A pain free day is wishful thinking..   Thu Sep 29, 2011 12:21 am

I wonder if the ihrf could be of any help, since they are right there. I would suggest contacting them, see if you can speak to either Dr. Tanne or his wife, and see what they recommend..
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