Retitled: Phase II, let it begin.

[EeFall]

Last night I was out with 6 other female friends, we meet up about every 3 months and have been friends for over 30 years.

I envy that you have friends of 30 years that you can still go out with once in awhile. It is also awesome that they know all about your WED and accept you as you are. My home town was rural and most everyone, including my wife and I, had to move away after school to find jobs. Since moving from our home town we have lived in at least a dozen different cities and several states and close friends are few and far between. My wife does have a few close friends from around this area, which is nice, but not 30 plus year friends.

[Polar Bear]

I live in a small town which is about 14 miles from the city and have lived in the general area within a 20 mile radius all of my life (excepting a few times when living abroad). I also have two friends of exceptionally long standing, met them when I was 17 which is 47 years ago. Some times there have been gaps in our contact but one of them actually said today that when apart it's as though we are not really apart and we can pick up as if we had just met yesterday.

That's how I get my gas.
Also she is one of the few who knew me when I was slim, wrinkle free, and we both had the world at our feet.

[badnights]

Ann, I feel as if I'm in the same place you are. I already mentioned here somewhere that my doctor told me I should reduce my work hours, plus I should get counseling to learn how to accept this. I have to start letting go. I have to find something different to do - or, a different way to do what I do, a way to be acceptable (to myself, to people who would pay me for what I do) despite doing less.

I have to stop regarding this reduction in hours or energy or capacity as a reduction of me. It's bitter hard to do, because everything that I have defined myself by, all my life, is now reduced. I know it's unhealthy to define my own worth that way, but knowing it doesn't make it easy to change. I've always been an energetic person. So who am I now? I've always been creative, a problem-solver, highly productive, a fast learner, well organized, a person who did things thoroughly and still had time left to do more. That was me. So who am I, now that all that is gone? I never developed a self-image that valued any other aspect of myself.

It's profoundly sad to think of all the potential in WED patients that is never going to be fulfilled. Not as long as society cannot understand how to fix our disease. We're sapped of energy, and the ideas and creativity go nowhere.

I think an iron infusion should be the next step for a lot of us. A lot more of us than have had them. Roughly 75% of us can expect to see an improvement from it. I'm in! Unfortunately, I have to wait til June, when my GP gets back, to even begin the process. I warned her it was coming before she left, but didn't ask for anything specific to be done. I want to make sure the Johns Hopkins bunch isn't going to call me in, first, because I plan to go off all meds before or right after the infusion, and I don't want to do that twice in a row. Then I will have to wait for her referral to the sleep dude, then a referral for the infusion - hopefully. It will be over a year, probably.

So, lots more cookies in my immediate future . I just need to find someone else to eat the extras after I taste them....

send them my way

[ViewsAskew]

So, I've started.

This morning I contacted two hematologists to see if they will work with me. I figured I need to get one of those onboard first. Since my doctor isn't local, I guess I'll need to find one on my own. Alternately, I guess I can try with a primacy care doc - but I don't have one. I did sign up for insurance through the new insurance offered in the US courtesy of the Healthcare Act, AKA Obamacare. I reviewed the list of doctors I can see and have narrowed it down to three or four. I might as well throw a dart.

Lots of offices are closed today and tomorrow because of the new year. On Thursday I'll try to make an appointment with one of the doctors and see who can see me first - that's a good way to decide! The PC doc may have other ideas - guess I'll have to wait to see.

Not sure when I'll stop all drugs....before the infusion or right after. I haven't taken my drugs on time tonight - and am having trouble sitting here, let alone sleeping. I can't even imagine how horrible it's going to be when I stop them.....

[Polar Bear]

Beth - I understand so clearly what you mean when you talk of how you feel you are defined i.e. by the work you do, being a problem solver, keeping all the balls in the air and looking for more balls.

I have spoken before about my unexpected full retirement (4 years ago) when I really wanted to do a couple of days weekly and how the full retirement actually turned out to be a good thing for me in that I no longer had to be so concerned about clock watching/sleep pattern. However, this retirement also meant that my income was drastically reduced and I was no longer contributing as I had been. This was not an issue for anyone other than myself and I am fortunate that I had met my husband who was a big believer in that everything is 'ours'. All of my entire adult life I had 'paid my way' and it was so hard to get used to using 'joint money' for personal matters. A year ago I started earning a little from home, it's not a lot, but it is sufficient to let me pay for my own car/insurance/road tax, etc. etc. And for me to suggest the occasional treat... at my expense. Perhaps it is a sense of purpose, and perhaps I'm not explaining it very well.

Ann - I applaud you in your efforts to organize an iron infusion. It is a daunting task with regard to the administration or not of your normal meds.

[cornelia]

Ann I wish you well with your next step: iron infusions. Do you have to stop the meds or do you just want to because you see no other way? If it were me I would do the most difficult thing first.

Today I read again on Google alert (Swedish nespaper) of the Swedish woman who got the morphine pump and she is doing very well. I hope this will be a new option for the near future for all of us who have tried everything and are still suffering.

Corrie

[ViewsAskew]

Ann I wish you well with your next step: iron infusions. Do you have to stop the meds or do you just want to because you see no other way? If it were me I would do the most difficult thing first.

Today I read again on Google alert (Swedish nespaper) of the Swedish woman who got the morphine pump and she is doing very well. I hope this will be a new option for the near future for all of us who have tried everything and are still suffering.

Corrie

Hi Corrie - I do not have to stop them. But, I won't know if it's effective if I do not. I'm deciding what to do - I understand that the effects can be relatively quick or take up to 6 weeks. So, not sure when to stop! I could just stop immediately after getting it. Or, I could start tapering and only use them when I need them and see what happens.

Also, I'm wanting to see what happens if I take a full month off of opioids in case I need to keep using them - and since nothing else works for me that wouldn't cause issues (augmentation or severe depression), that means using nothing. I do NOT want to do this AT ALL! But, I have to wonder if I'd reset the receptors and be able to use less. I did take a month off of opioids before, but I used tramadol. I didn't sleep more than a few minutes a night, but was comfortable enough while awake and moving. I have to wonder, though, if the tramadol is too similar to opioids in that my brain didn't reset. I suppose I could use pramipexole here and there when desperate. It makes me soooooo depressed, but it may be better to be extremely depressed every other day or every third day and get some sleep. All decisions I do NOT want to have to make.

I talked with my husband about this tonight. We agreed that if I can't find a doctor or hematologist to help with the infusion, that hubby is going to have to find extra work to earn enough to cover the cost of me flying out to California; I can stay there with my friend or relatives and pay full price for it to be done there. I imagine Dr B has worked with someone there who will do it. I imagine I'll need several thousand dollars if this happens.

We also talked about this new pump. It's my last option. If the infusion doesn't help, I'll push to try morphine and see if it resolves the methadone issues. And, if that still creates side effects that keep me from working, I'll push very hard to get one of the pumps. It sounded like this pump made a huge difference for this woman, didn't it?

[cornelia]

Yes, the Swedish woman who has posted on RLS UK is very pleased with the pump, but it's only 2 months. I read the research you posted and I find that a positive story too. I don't know anthing about the USA health system but I think you will have to battle (!) for it. Gosh, maybe thousands of dollars when you go to see dr B? In my country you have to pay every month for the health system (and your employer pays part of it) and after that everything is free.

I am quite sure that my neuro would say that taking Tramadol when coming off opiates works counterproductive. The idea to use DA's during that period from time to time seems a good idea to me. It's hard to decide what to do. Have you considered the 10 days drug holiday that Early/Allan wrote about? Not as good as a DH of 4 tot 6 weeks of course but maybe it works.

Corrie

[ViewsAskew]

Yes, the Swedish woman who has posted on RLS UK is very pleased with the pump, but it's only 2 months. I read the research you posted and I find that a positive story too. I don't know anthing about the USA health system but I think you will have to battle (!) for it. Gosh, maybe thousands of dollars when you go to see dr B? In my country you have to pay every month for the health system (and your employer pays part of it) and after that everything is free.

I am quite sure that my neuro would say that taking Tramadol when coming off opiates works counterproductive. The idea to use DA's during that period from time to time seems a good idea to me. It's hard to decide what to do. Have you considered the 10 days drug holiday that Early/Allan wrote about? Not as good as a DH of 4 tot 6 weeks of course but maybe it works.

Corrie

I think I have to try at least some time off of everything. Ten days sure sounds better than 4 to 6 weeks!

[ViewsAskew]

I promised myself I'd do this. And, I will. I think.

Because of website issues, I didn't get insurance selected from the US exchanges by the due date. The company I chose didn't answer their phone, we were on hold and disconnected multiple times from the exchange help desk (thousands of other people has problems, too) and we spent hours on the 24th trying to figure it out. When I received the, "We're sorry, but we're closed for the holiday" message at midnight, I knew we were sunk.

On the 26th, we were told there was an error in how I created the application (hubby and I file taxes separately, so we couldn't be on the same application even though married....never crossed my mind). So, we had to create new apps. But apps had to be created by Dec 15th to get insurance by Jan 1. They said that after we each completed new apps, we would have to call back and we'd get an exemption. We called back on the 27th when the apps were completed....as of today, we still haven't heard about an exemption. No insurance for either of us, it looks like, for January.

Last Friday, a colleague called me - she needed someone to work with her on a short project. All work from home, few if any meetings with the client, no more than 25 hours a week. All I could think of was that I'd never have insurance in January anyway, so I might as well work part time. The whole time I was talking to her, I just knew I should say no. I said yes.

Now? I regret it more with every moment that goes by. I was in the worst funk all weekend. I slept 16 hours on Friday/Saturday. I think I screwed up and took my meds too early, so ended up with a 1.33 percent of what I normally take. I was sleeping from 11 AM until 7 PM each day. Then I got absolutely wired (which is starting to feel more and more like rapid cycling bipolar) and stayed up for about 30 hours. I took meds when I needed them, as I had no idea when sleep would be. When sleep came, I took what I normally would have taken...but I think it was about 8-10 hours before I was "due" have taken them in terms of x doses per 24 hours, meaning I took too much.

So I slept. I mean, I was out. I didn't wake up for 9 hours - that very rarely happens. Even if I sleep 9 hours, I am awake often enough and sometimes have to do leg exercises several times in order to get back to sleep. Not this night. And I was sooooo tired when I did wake, I couldn't get up. I just stayed there and didn't wake up for 7 more hours. Since I've been quite depressed, though seem to be coming out of it a bit tonight.

When I force myself to think about it, this has been the pattern for a couple years. 1-3 days feeling good, a few days really down, and sometimes some neutral days. I keep saying it's the meds, the vitamin D, lack of exercise...but what the heck do I know? Maybe it's not. My mom has chronic depression, so does my sister, my uncle and grandmother. My niece is bipolar. We all have WED, too. Why not some sort of mood issues for me, too?

Not sure what I'm doing next. I guess I'll tell them to forget about the exemption, call the doctor I chose to set up an appt for the first week of Feb (assuming I can get in that quickly), and go from there. If the doctor isn't available, I'll try the next one. I vetted 6 or 7 that I think are OK and are relatively close. I'll just start at the top and move my way down. I have no real way to pick, anyway. This is as good as any way.



I keep telling myself to call my colleague and tell her I just can't. But, I really don't want to sit here all month doing nothing if I can't see a doctor until February. Even after I see the GP I choose, it will likely be weeks before I can find a doctor to do the infusion. So, why not work? The other part of me is saying, why do you want to put yourself through any of this? Just shut up, take your meds, and be happy your WED and PLMS are mostly under control and you sleep. Forget that you sleep weirdly and are alternating between depression and mania. The third voice (and not really voices, but more perspectives I keep hashing out), is that I DO need to so something, but why try to work at all until something is figured out. Just chill, propagate some plants, and work on acceptance.

[cornelia]

I can relate as to saying yes to things while you know damned well you shoudn't and pray the price for it. It happened to me multiple times and I still am doing it sometimes.

I can actually also relate to the depression/feeling good days. As soon as I get up I know what day it will become: relatively joyful or depressed. And I never can change my feelings on the specific day. When I get up quite cheerful I will stay like this until I go to bed again and the other way round. I have often wondered why it works like this. I think that many of us can feel really depressed but we don't always suffer from the real clinical depression; the depression is part of mood swings caused by RLS.
Corrie

[ViewsAskew]

I can relate as to saying yes to things while you know damned well you shoudn't and pray the price for it. It happened to me multiple times and I still am doing it sometimes.

I can actually also relate to the depression/feeling good days. As soon as I get up I know what day it will become: relatively joyful or depressed. And I never can change my feelings on the specific day. When I get up quite cheerful I will stay like this until I go to bed again and the other way round. I have often wondered why it works like this. I think that many of us can feel really depressed but we don't always suffer from the real clinical depression; the depression is part of mood swings caused by RLS.
Corrie

It makes me feel crazy!

I was reading about brain chemistry a few weeks ago. The person writing the article said that we're crazy to think that we can make changes in people's moods with our current drugs. He said that there are over 100 chemicals involved and that changing one of them just wasn't going to get us anywhere. When I was reading it, I had this sinking feeling. No wonder WED seems so complex - it involves so many systems (or seems to) and brain chemicals. No wonder we suffer from anxiety, depression, mood swings, and who knows what else.

I don't mean this to sound like I am happy you feel this way, but I feel better knowing that someone else feels this way, too. Thank you for sharing that with me.

[Polar Bear]

Views/Cornelia - Thank you for expressing your feelings. I believe you speak for many others who don't quite find the correct words.

Views - With regard to saying yes to your colleague when you feel you should have said no....... that horrible feeling of being in a spin, you know you can do the work... what else would I be doing for the next 4 weeks....... but then....Am I well enough to do the work..... and I think that you are perhaps the type of person who doesn't feel you have done enough unless it's at least 150%.

Jeeeeezzzz... there's a lot to this RLS/WED....

[ViewsAskew]

About a week ago - probably on New Year's Eve - I located the 8 doctors in my new insurance plan who are covered and who are hematologists. I discounted the ones that were over 55 - sounds mean, but so many of us have had better luck with younger docs who are more willing. I narrowed it to two and sent them both emails. The first one was intercepted by scheduling staff and it never got to the doc. They just wanted me to make an appointment. I'm not going to do that! I'll have to see what I can do to get around the staff.

But, today, I heard from the other doc. He said he wasn't clear on how it helped, but he WAS WILLING to review the literature and work with me. I can't tell you how much better I feel. He said insurance could be an issue. If any of the rest of you have had them covered, how was it coded? How did you convince the insurance to cover it? I copied Dr B on the email - I need the protocols and all the studies related to send to this doctor. Hopefully he has them for me.

[LucyBrown]

Hi, I just saw all these posts, and what you wrote to begin this all was brilliant! About 6 months ago, I decided to go off Horizant, which I had been taking for 2 years. The side effects were finally just too much; my balance was terrible and I was falling. I had to stop work/everything and pay attention to this. I went off the Horizant in a matter of weeks. I used a TENS stimulator on alternate nights. That probably increased my endogenous opioids. In retrospect, it took 8 weeks for me to be completely free of the effects of the Horizant. I now take a different med each night for a week, alternating with TENS stimulation and usually one night with nothing. I think it is important not to take one of the medications for too long because our brain systems adapt and change. (I'm a neuroscientist). This approach has worked well now for 6 weeks. The Horizant gives a great sleep one night a week and I can plan it so I am not walking a lot or exercising the next day. I use Percocet and diazepam, too, once or twice a week. Good luck with your new phase. I am very optimistic that it will be helpful. Best, Lucy