Better than worst...awful...not terrible...

[Grace]

I don't know if this is the best place to post this, but I can't think very clearly, but I need to reach out to the humans. A little bit ago, wrote a nearly cheerful-sounding post and accidentally deleted it. Not feeling a teensy bit cheerful anymore.

I can't figure out what is making me worse. I'm avoiding nearly all activity and I DO NOT SIT. But sometimes it's worse than terrible. Right now, I'm heading to the crazy stage. What am I doing wrong?

I just feel like I can't take anymore pain, but I'm going to. I don't want to keep trying meds. I want this to be OVER. My pain clinic doctor prescribed Keppra since Neurontin didn't work for me. I just feel like why bother? Nothing seems to touch this pain. I've lost my job and my insurance runs out at the end of the year. So even if I find something that seems like it might help, possibly, maybe, some of the time, when the weather is right and I've good and kind to all of God's creatures... I won't be able to afford it come 2014.

Everyone seems to just keep on suffering. OK. Not everyone. But you know what I mean. I'm sick of chasing this down.

Just had to say that.

[HerMajesty]

Have you been following the latest on the Affordable Care Act? Unless you totally slip through the cracks, it should keep you insured in 2014, either subsidized in the exchange or else under Medicaid expansion.
Chronic illness has been a way of life for me and I agree the "chasing it down" is very tiresome...but I also know from experience that the "goal" you state in your signature is possible. I have come up from the pit of seemingly unbearable pain and total disability twice now.
Are you keeping a "pain diary", charting pain data alongside your activities, therapeutic interventions, etc to look for patterns? I never really kept one on paper but I was very alert for patterns, and I did get a ton of relief from resulting lifestyle modifications. I think doing it on paper could be helpful if you are already mentally vigilant but still can't figure out what causes relief and what causes a flare. Have you considered that change in weather (specifically barometric pressure) might be causing your current flare? It can be something as far removed from your personal actions as that, or as closely tied to your personal actions as the shoes you have been wearing lately...or a million other things. But in my experience, remission and exacerbation is NOT random; and finding patterns is your first step to creative means to control symptoms.

[Grace]

Thanks forthe reply and suggestions. I had no idea that weather conditions could affect PN. The changes definitely affect my fibromyalgia and it's really playing up just now, so that makes sense. I considered it several times and started to think I was over attributing.

If that is the case, it all makes sense, but I am disappointed to learn that a flare can mean going from miserable to miserable-er! I have not experienced being asymptomatic or even functional since this began last December. And I am flippin exhausted.

I hope the affordable care act can help me and my family. I have not followed closely at all. Too busy sharpening my pessimistic outlook.

[HerMajesty]

As the Affordable Care Act stands right now to the best of my limited understanding:
- EVERYONE must have health insurance by Jan 1 2014 or pay a penalty
- Exchanges / Marketplaces to buy insurance opened Oct. 1. Each State runs its own. You will not qualify for any subsidy in the Marketplace as long as your employer provides the minimum standard of coverage. As soon as your employer stops covering you, your household income will put you into one of 2 categories:
1. You will be above poverty level and able to buy insurance at a flat rate (no higher fee for pre-existing condition), with a subsidy that depends on income. If you are above poverty level but relatively low income due to loss of your job, you might pay little or nothing for coverage.
2. You will be below poverty level and qualify for Medicaid which is expanding.
That's the best case scenario: worst case, I have heard a few States have chosen not to expand Medicaid to cover people whose income is too low to qualify for a subsidy, leaving a gap where people at some income levels slightly above poverty might slip through the cracks. Other States don't have that gap. You have to go to your own State's website and type in your info to see what you will qualify for.

Barometric pressure changes bother a lot of us. I live in the desert which is ideal because the pressure changes least. There are alternative practitioners out there now (Chiropractors, Naturopaths, etc.) who have purchased high pressure chambers you can buy time to sit in, to relieve flares caused by weather induced dips in barometric pressure. I have never tried them though and don't know if they work...I mean, when I am in a pressurized airplane cabin I do better neurologically, but that is when I am IN the plane. The claim these practitioners make is that there is lasting therapeutic value after you LEAVE their pressure chamber. I don't know if that is true or not. But if your flare is weather related it might be something to look into.

[Grace]

ard to move forward. My docs are kind but clueless! I really need help to navigate. I live in west Michigan and haven't found any knowledgeable health practitioners yet.

I don't know what the next step should be. I'm thinking pudendal nerve block, although that wasn't the pain docs suggestion. He mentioned implanting electrodes and I tuned out due to panic. I really should record these meetings. Anxiety too often often overrides my online processing.

I will write a new post for Michigander medical professionals. Maybe I will find a lead.

Thanks for your help.

[Grace]

Lost part of the post again! Let's just leave it at THANK YOU!

[HerMajesty]

always highlight and copy before you post, I have lost a few myself
an electrical implant is IMO a HORRIBLE idea if I understand the stage you are at: Kinda new at this without much idea about your pathology yet, because I don't think you have had enough diagnostic work done to pinpoint the source of your pain. Once you implant metal, you can kiss most diagnostics goodbye. I think some people have had good success in using implanted devices for pallative care if their pathology is too complex to correct. In your case, has anybody even checked into the source of the problem? That's the 1st step in finding out whether it is fixable. I have not been following every step of your case, but from the posts i have seen, it sounds like they are trying to stop the pain indirectly: try this pill, what about that pill, OK let's zap it with electricity...um...There is a big piece missing here: Why do you hurt in the 1st place? If they want to zap it with electricity, maybe try out a TENS unit which is totally external.

[Grace]

You're on the money. Nobody seems to be able to help figure out what the problem is and I seem to be the only one who wants to know.

I've come up with a few ideas but I've been told these are highly unlikely or impossible: 2 years of chronic yeast infections preceding onset, laproscopic hysterectomy 6 months prior, a moderate fall on my right glute a day or two before constant pain onset. Imaging reveals all is well re hysterectomy, yeast infections are seen as an impossibility, and the fall was not serious enough.

One doc tells me it's the fibro plus the two c section deliveries plus hysterectomy. And the when I told her I needed to get better so I could be functional and back to work by the fall, she laughed, ''Do you think this is seasonal?"

I need to find someone who is willing to take my case seriously. Not just drug me up to keep me quiet!

Wish I could take one of you experienced ones along with me. Heck! There's a business idea for those of you who are functioning well and know your way around the medical system. A PN consultant... good for helping families adjust as well... hmm... Know anyone looking for a fall holiday in West Michigan??

[HerMajesty]

Unfortunately sometimes local care is not available and you have to do the "PN World Tour". No matter how much knowledge you accumulate, doctors tend to bring their own strong biases which can rarely be overcome simply by supplying them with objective data. They will either get irrational or else tell you honestly that they are intimidated by their lack of knowledge of the subject, and want you to see somebody else. But the locals who did help me, I found when I started going to a pelvic floor PT. Since her field was so specialized, she was well connected in with the local practitioners who were open to working with pelvic pain patients. Some have a limited knowledge base but are respectful enough of your own research, that they will supply referrals for tests and out-of-state consults when you self direct your steps to diagnosis and treatment. There really is no substitute for becoming informed enough to direct your own care. have you checked here for a practitioner in your area: http://pelvicpain.org/providers/find_provider.aspx ?

[Grace]

There are three on the list in my city!!!I have never seen this list. I'm so happy I could cry!

I'm very limited financially and physically, so travel just isn't possible for me right now. But I definitely intend to start charting my course.

I so so SO appreciate the advice, so never feel your words are wasted. The advice I've received on this list is INVALUABLE.

A thousand thanks!
angel grace