Retitled: Phase II, let it begin.

For everything and anything else not covered in the other WED/RLS sections.
ViewsAskew
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Retitled: Phase II, let it begin.

Postby ViewsAskew » Fri Dec 13, 2013 6:03 am

Originally, I titled this Holding pattern - eventually you have to get gas. I've decided to retitle it and keep track of what I do in relation to the decisions I made when I wrote this.

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Have you even flown to a city only to find yourself in a holding pattern when you think you should be landing? You are flying in circles over the city, around and around, waiting to land. Too many planes, bad weather, who knows.

I once had a contract job in rural Pennsylvania. There was a large company headquartered in the middle of nowhere. The most common way to get there was to fly to Pittsburgh and get on a twin prop jet (seated about 25 people, if I remember correctly) and fly to a very small regional airport. The regional airport was in a hilly region and in a bowl of sorts. The weather often kept planes from landing. I left Chicago at 6 AM and landed at Pittsburgh an hour or so later. My next plane was to leave at 9 AM. They told us fog was an issue at the destination airport, so we didn't depart on time. At 11AM they said the weather was clear, so we got in line to board. At 11:30, they told us to sit back down, that the weather was again a factor. I finished the book I brought with me and went off to buy another and a few snacks. At 1 PM, they said, HURRY - we're leaving now! We rushed to get on the plane and off we went for what was supposed to be a 45 minute ride. Quite awhile later, I looked up from my book and realized we'd been in a holding pattern a LONG time; I wasn't sure exactly what time we'd left, but thought we'd been flying for about 1.5 hours. About that time the pilot addressed us and said, "Sorry folks, but the weather is still poor here and the wind shear too dangerous to attempt landing. You may have noticed we've been in a holding pattern; I was trying to wait it out, but we have to go back to Pittsburgh now or else we'll run out of gas." Back to Pittsburgh we went.*

I feel like many of us here are in a holding pattern with our treatment, our symptoms, our drugs, our family lives - all the things hurt and affected by WED. The problem is that we run out of gas eventually. We either have to take a chance and land or we have to take a break and then try again. I was out of gas last week. Probably I've been out of gas for months. Really? I've been out of gas for years, but I kept deluding myself that I was still flying, circling, and trying to get to my destination . But last week was really tough. I decided that there isn't any gas left to put me back in the air to go round and round any longer, literally or delusionally. I have to land permanently.

I decided that I'm going to take a break from work (I finish a project this week, I hope) and spend as long as it takes to do as much as I can to optimize my situation. Once I know what it is, that's what it is. If I can work, I do. If I can't, I don't. If it's part time, I'll have to figure out how to do that. I vow to stop waiting, hoping and yearning for better weather - better weather for me means having a "normal" life. I can't seem to give this up. I'm healthy, I'm young (well, more middle age, but I feel young in my head), I'm smart, I have a lot of offer, I work hard, I want to contribute - and the list goes on.

But, my body, the drugs, and the WED won't cooperate. They haven't for ten years. I realize I've really been in this holding pattern since 2004. In a few months, it will be ten years that I've been trying to get this right. And, it's been wrong, wrong, wrong.

Or maybe not. Maybe I've been wrong, wrong, wrong. At least how I think of this is wrong.

A friend of mine was in a terrible accident. He is a database programmer. He was hospitalized for months - he was in a coma for a couple months, lost a leg, lost 80 percent of his sight (he sees shadows, light and dark), spent over a year in rehab, and eventually lost his marriage - this kind of accident is hard on relationships. I saw him recently. He rides his bike in a marathon every year to raise money for charity. He runs every morning with his dog. He works full time. He's alive, happy, and productive.

I kept thinking all these years (this happened to him about 12 years ago), that he was my role model - he got his life back, so, so could I. But, I forgot something important. He didn't get it back at all. He created a NEW life that fit within his undesired limitations. He runs - but with a helper dog. He bikes, but with a bike in front of him with a beacon on it so he can follow more easily and a follow bike that make sure nothing happens to him. He works with the help of text to voice software. He doesn't do it alone, and it isn't what his life used to be. It can't be. No more than mine can be.

I've been wanting my old life back. It isn't ever going to happen. I can continue to fight it, or I can accept it and create a new life. One that someone else might be proud of - as I'm proud of him - or not - that doesn't really matter. But one in which I can land completely, before I do run out of gas in a way that is irrevocable. One in which I can create a life that works with these limitations, whatever they may be, and in which I am happy and accepting of who I am.

I hope I stay landed for a long time, but I have a feeling I may find myself up in the air, going round and round once again before it's all over. I just hope it's only for one or two circuits, not years.

* Wondering if I ever got to my destination on the flight I mentioned above? We landed back to Pittsburgh around 4 PM and I bought another book (I'd only brought 1 - I ended up going through three that day) and and early dinner. We finally left later that evening and landed just before 10 PM. I was surprised that the rental car place was still open - I mentioned it and the attendant said they were closing at 10 - that was in just a few minutes. I suppose if it had been later, I'd have been stuck at the airport. It was still a 45 minute drive to my location - in good weather. In the mountains in the rain and fog, I was a bit nervous, trying to follow a map (this is pre-GPS days). I made it to my bed and breakfast (the company paid for it, not me!) about 11:15 PM.
Ann - Take what you need, leave the rest

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Re: Holding pattern - eventually you have to get gas

Postby Polar Bear » Fri Dec 13, 2013 7:40 am

A beautifully put post. And I'm sure we will all realise just how much thought you have put into making this decision, such a big step to take.

The process of coming to such a decision must have taken such a lot of self searching in particular considering the lack of a salary coming in. This self searching will have been very difficult and stressful. And now that the decision has been made I hope that particular weight is off your shoulders and you can start to deal with matters as they are while there is still some fuel left in the tank.
Its now time for Ann.
Betty
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Re: Holding pattern - eventually you have to get gas

Postby ViewsAskew » Fri Dec 13, 2013 10:30 am

Thanks, Polar Bear. I have fought this for literally years. We haven't been financially stable and we're not really there now, either, but when is enough? I finally realized that there is no way that I can try to work while doing all I need to do. My first goal is a doctor locally - been there done that multiple times already to no avail, but this time I'm not looking for a neuro or sleep doc - just a plain ole primary care doc who will listen to Dr B and do ferritin tests and help me get an infusion. The Infusion is first. Once that happens, I'm planning on stopping all medication for at least 30 days. That likely means no sleep, but so be it. I'm hoping that I'm one the infusions help. Given that my ferritin level was 8 when this all started, it certainly is a possibility.

From there, we'll see. I'll find out if there can be a "new" normal that is appreciably better then the old one. If it's not, then I have to figure out how much I can do, then what I can do. I have a lot of ideas, but all take more energy than I have now.

I can't get the infusion until the new year - we're on a Federal pre-existing condition healthcare plan and we have to transition to a new plan on Jan 1st - when the main parts of Obamacare go into effect. The Federal plan will cease to exist. I'll have a deductible to meet, so I might as well apply it in the new year.

Until that happens, I've already been back in the kitchen. I'd started a cookbook years ago when this all started. I never finished it. Maybe that will be the first thing I do. So, I've been testing recipes. The cookbook is for people with food allergies/intolerances, with focus on gluten free. But, I've subs for dairy, soy, nuts, egg, and corn, too, for each recipe, so the major items are covered. Many celiacs, at least initially, find that along with gluten, they have to avoid dairy and other things. It can be hard to know how to sub for several items at the same time. I usually start with GF and then figure out the subs after I perfect the GF recipe. Today I finalized an EXCELLENT (if I may say so myself) recipe for chocolate crinkle cookies (also called crackle cookies, snowcaps, fudgies, and who knows what else). I honestly don't think anyone would know they are GF. It will be a bit harder to make them dairy free, but they'll still be good. And hardest yet to make them egg free (lots of tricks vegans use, but sometimes you lose flavor or consistency - or both). So, lots more cookies in my immediate future :-). I just need to find someone else to eat the extras after I taste them....

Tomorrow, working on a gluten-free potato bread that I've worked on off and on for about five years. I haven't worked on it in almost three years - I was close when I last did, but then we moved and I got sidetracked. Here's hoping that break has allowed me to get the breakthrough I'm looking for :-). Really good GF bread is the holy grail. I have a several recipes I've developed that I really like, but I need at least three more. This one would be most like good white bread - one of the hardest in the GF world, especially if you want any nutritional qualities or flavor. My newest flour mix may be the solution I've been looking for....
Ann - Take what you need, leave the rest



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Re: Holding pattern - eventually you have to get gas

Postby Polar Bear » Fri Dec 13, 2013 11:21 am

Fabulous, you are so positive and forward looking.
And to be able to think of stopping meds for 30 days..... wow !
Betty
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cornelia

Re: Holding pattern - eventually you have to get gas

Postby cornelia » Fri Dec 13, 2013 1:26 pm

This is a very fine post Ann, you should get it published in a well read medical magazine, I'm serious.

I hope you will be OK with the infusions. My ferritine was 11 at the time and with pills I got it up to 290 but without results. I wonder if I could get better results with infusions. I hope you will be very lucky, that they will help you a lot.

There will be a lot of interesting reading for us when you will hopefully share your attempts and progresses (and failures). I'd think that the drug holiday is a very wise thing to do, especially if you want it to last 1 month. I wish I I had the same courage. Maybe one day I try again..

Thanks for your hopeful and invigorating mail.
Corrie

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Re: Holding pattern - eventually you have to get gas

Postby Rustsmith » Fri Dec 13, 2013 7:15 pm

Ann, that is a beautifully prepared creative writing piece. I wholeheartedly agree with Corrie that it needs wider distribution than just this bulletin board. The message of a need to re-evaluate our lives in the context of changes in our health is a message that applies well beyond the WED community. I could see the parallels that my wife (and I) have had to make in our lives as a result of the limitations of her MS. Yes, she gave up her engineering career, but we have found other things (such as scuba diving together around the world) that have taken us places that many of our healthier friends only envy. There is no way that we would have selected that direction for our lives if not for her limitations, but we are both the better for it.

As for the piece, I think that rather than a medical magazine, you should give consideration to publication in something such as the AARP magazine or one of the health magazines. The message that we periodically need to re-evaluate and re-invent or redirect our lives within the context of our physical limits (due to aging if nothing else) is one that very many people need to hear. Your piece provides that message without getting too far into your own personal situation.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Re: Holding pattern - eventually you have to get gas

Postby ViewsAskew » Fri Dec 13, 2013 8:09 pm

I'm humbled by your responses. Thank you. I hadn't considered anything while writing it - the metaphor sort of crystallized as I was writing and thinking about it. I'll consider it.

Steve, one of the things I've been contemplating is to create a placement company for people in these positions. My best friend has lupus - she is single and full time work is too much but she MUST work. We need a company to advocate for us, to find and create professional positions in companies. All the work is for full time jobs - I know a few people here and there who've created part time professional work, but usually when they already worked for the company. I haven't a clue how to create a job placement company, but I have a friend who runs one. Maybe he's interested in starting a second company :-).

It may be that some people, maybe this would apply to your wife (I don't know), wouldn't be able to work part time, but many people would. From diabetes to MS to cancer, people have periods where they want to be active and may need to earn money, but can't do it in a traditional way. We need to create that for people.
Ann - Take what you need, leave the rest



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Re: Holding pattern - eventually you have to get gas

Postby Polar Bear » Fri Dec 13, 2013 8:58 pm

:) :)
Betty
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Re: Holding pattern - eventually you have to get gas

Postby Rustsmith » Fri Dec 13, 2013 9:36 pm

Ann, thanks for the thought about professional placement, but those days are long past for Debbie. Not only has she been out of the workforce for 30 yrs now, but I was very blessed in that my career such that neither one us needs to worry about working another day. I continue "working" one day per week doing mentoring and teaching of young engineers and graduate students, not for the pay but because the experienced people in my industry are retireing at the same time and the new graduates do not have anyone to provide them with guidance until they get some experience. Yes, the companies still have senior technical staff around, but the "right sizing" that occurred during the 80's and 90's has left the few senior folks so overloaded with their own work that they do not have time to spend any time with the new graduates. From my standpoint, this type of consulting if fun because I don't have to worry about budgets, writing reports, attending pointless meetings, overseas airline flights of >24hrs (my WED nightmare for years) or any of the other normal hassles of corporate life. I get to do the fun part of an engineer's work, which is concentrating on the technical issues and working mostly with the more complicated problems where I get to play the engineering equivalent of Dr. House (but usually without the attitude). It is great to see the light come on in someone's eyes as they suddenly understand a problem and what how they need to approach fixing it.

At one point a few years ago, I made an offer to Debbie that she could "work" for me and utilize my engineering license from the state to do legally do part time engineering work. But, as your piece so aptly points out, that is something that was in her past and is not an important part of her "new" life. Yes, the transition when she made the change and had to give it up was difficult since engineers are born and not made, but that is over.
Steve

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Re: Holding pattern - eventually you have to get gas

Postby Polar Bear » Sat Dec 14, 2013 12:13 am

Rustsmith - I can feel your enthusiasm for your engineering work.
And the poignancy of Debbie's position is very moving.
It is a delight to hear your joy in the imparting of knowledge.
Betty
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Re: Holding pattern - eventually you have to get gas

Postby jul2873 » Sun Dec 15, 2013 3:06 am

Good luck to you, Ann. I'm sure this has been a very difficult decision for you.

Because my daughter cannot eat either soy or dairy, I was interested in your cooking comments. Have you ever considered self-publishing e-books on different kinds of diets? I do a good bit of self-publishing myself (under different names, for different subjects or genres). Unless you are incredibly lucky you won't get rich, but you might be able to develop a nice little income. I'm thinking something along the line of little specialty cookbooks that you might sell for 99 cents. If you take your own pictures and do your own formatting (which isn't hard) you wouldn't have any expenses, really, and you'd get about 33 cents for each book sold. Or write longer cookbooks and sell them for 2.99. Then you get almost 2 dollars for every one sold. But it's a lot easier to sell for 99 cents, and if you wrote a lot of them . . . A lot of publishers are jumping on the special diet cookbooks but you can undersell them. Study what's already out there, and find a niche. I took a quick look, and it seems to me that everything is all about no gluten now. I'm wondering about a little book about no corn, another one about no soy, etc. Or one about what products have soy, have msg, have hidden dairy etc, in them.

I have also had the experience of being published by a major NY publisher, and I have to say I would not go that route now--unless it was somehow guaranteed that what I was writing would be a best-seller (like the Shades of Gray books). But, with the explosion of e-reading, publishing yourself is now quite possible, and I find it a lot of fun. When you publish yourself you can always be changing your books, and can really write a lot.

Anyway, if you're interested in self-publishing, and would like to chat with me more about it, I'm more than happy to do that. You've been such a help to me, and to so many other people, on these boards.

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Re: Holding pattern - eventually you have to get gas

Postby ViewsAskew » Sun Dec 15, 2013 4:00 am

Thanks for the offer of help, jul2873. I've debated how to do it but haven't done any research, yet - when I'm ready for more info, I'll contact you. I've a few friends who've published academic books - they are lucky to see a few dollars trickle in each year on texts that cost students many dollars. Definitely not a way to get rich! I've contemplated doing the blog thing and building a following, through which I could e-publish.

I feel for your daughter - soy is hard - it's hidden in so many things. I'm dairy and corn intolerant (likely due to a surgery I had that removed part of my GI tract) and my husband is celiac. Our nephew was gluten and soy free for a couple years. Three in our family are diabetic. I've definitely had to learn my way around "free" cooking and baking, as I like to call it. It's so much easier when you understand the science behind how cooking and baking work, but so many of us do not. And, it's easier if you're rich, as so many alternate ingredients cost many times more.
Ann - Take what you need, leave the rest



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Re: Holding pattern - eventually you have to get gas

Postby EeFall » Sun Dec 15, 2013 8:35 am

Awesome post ViewsAskew, your views are anything but askew. Our holding pattern for severe WED I am afraid is very deceptive. It has taken me years to see it, mostly because I don't want to see it, but we never land, not really. I had 8 hours sleep last night and we took our grandkids and the parents to our yearly outing to a Santa breakfast.

I told my son at the breakfast that I had had 8 hours sleep the night before, he was elated as he knows it is extremely difficult for me to get that much sleep. He asked how I felt, I quickly assessed myself and I lied to him, I told him I felt great! Good lord, in those few seconds of self evaluation I realized I was dead tired. This evening I got into a terrible shouting match with my wife, she even smashed my favorite coffee cup against the sink on purpose. I blew up because of something she did and then she blew up too.

I sat here reading up on the Internet on ways to do myself in (I ruled out putting my finger in a light socket, too many terrible things could happen like losing my eyesight and hearing, leaving me blind and deaf and alive). I have to work a full time highly technical job, I have to drive 19 miles to that job and back everyday, and I am a powder keg of little sleep ready to go off at any moment. I shouldn't be working, I shouldn't be driving, I shouldn't have all this pressure, but there is no way out.

If you find a way out (other than death) do it. I would give anything to retire. I just have to hold on 3-1/2 more years. It seems like an eternity. In the meantime I can't even get along with my wife and we have been married 2/3 of our lifetimes. I never wanted this, I never wanted to have my wife start to hate me. It is just about the end of everything for me but I still can't land.

A few weeks ago I was reading about a rich movie star (it happens more often than you would think) who had to go bankrupt even though he owned an 80 passenger jet, he was worth over 100 million, yet he got into too much debt! He had to reorganize his finances and his life and ended up recovering and actually is worth 3 or 4 times as much now.

The last couple of years I have lost about a 5th of my income due to WED from when I couldn't work because I couldn't sleep at all, I had to take leave of absences without pay, I had to do the detox thing and stay home 5 weeks. I have had several surgeries too, not do to WED, but it is more difficult to get through those kinds of things when you have WED. It all adds up and yesterday we had $137 in our checking account. We were keeping our fingers crossed the day before, that the mortgage would come out, and it did. So I have finally hit bottom (knock on wood) and I hope it doesn't get any worse as all the bills are paid up for the time being.

So I am really living on the edge. I'm sitting here and it is 12:30 am. Another fine mess.
Last edited by EeFall on Sun Dec 15, 2013 9:27 am, edited 1 time in total.

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Re: Holding pattern - eventually you have to get gas

Postby ViewsAskew » Sun Dec 15, 2013 9:00 am

I hear you - wish I had NO idea what you were talking about. But, I do.

But, somehow, it seems we HAVE to land and get gas, or we crash in a pretty horrific way. Some of us have spouses who can handle our landings, but some of us have to work. As you do, so do I. I can take off a few months, but unless something changes dramatically here, my income is necessary.

I've managed to be a consultant part time for several years. But, that's not really how it works. I usually work full time for a month to several months, then have time off while I look for more work. So, when I work, I have to be available for 8 AM meetings and the lot. I've lied a lot on this last project; I shared a calendar and I faked meetings and other obligations for the mornings so that I'd never have to be in a meeting before 10 or 11 AM. Last night I somehow got behind my symptoms and they were worse because it's that time in my hormonal cycle. So, I went to sleep around 9 AM. How the heck could I have worked if I'd needed to? Thankfully it's a Saturday..but that isn't the point, is it?
Ann - Take what you need, leave the rest



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Re: Holding pattern - eventually you have to get gas

Postby Polar Bear » Sun Dec 15, 2013 2:39 pm

Being a Saturday where your time is your own isn't really the point. And we all understand what it is you are saying.
How crazy is it that we have to 'make up' a work schedule to show to others so as to allow ourselves sleep time - non sufferers could never understand why we need to do this.

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. They were my friends way before I had a diagnosis of RLS/WED. In those days they sat with me in the movies as I punched my legs for perhaps 90 minutes. And they accepted but did not understand the condition. Last night as we sat around the dinner table chatting, I did not have one symptom thanks to my medication for which I am very grateful. I was home at 11.30 and hubby and I watched the final of X-Factor, making it to bed at around 3am. At 4am hubby is snoring and I was up out of bed again and eventually got back to bed at 5.am and slept until 11.30am. I usually can sleep from around 4.30am and am lucky enough to be able to sleep on. However, as Ann says that isn't really the point. We are losing our mornings. I do my best to never arrange for anything before lunchtime.

And just as an aside -Last night I realised I no longer enjoy trying to chat/shout while the live band belts out Slade 'And here it is... Merry Christmas" !! :lol:
Betty
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