My health and What we know now.

So I'm going to do this two ways: the simplistic short and sweet first, then if you want to keep reading I'll elaborate. If you have time feel free to read it all, also all the memes. At the end I'll have some requests. If you're short on time skip to those, it's not going to hurt anyones feelings.

Basic understanding of what's going on:

My body is not good at making this one thing, but it's random. Some days it makes it great, some days it can't hardly make it at all. So the day the skin of my elbow was made it did a bad job, so that skin just rubbed off, but that doesn't exactly count for all of my skin at once... Every cell(in about 80 percent of my body) has a chance to be made poorly so I can be fairly normal in some places and tissue thin in others. That's why my limp is different every time you see me, I have different joints failing at different times but when it's time to repair a rip, I have that same chance to make it good or bad so it's never the same. Luckily this means a chance I can heal back better than I was before.

The more in-depth look at things:

So I have some form of Ehlers-Danlos Syndrome (EDS for short) this is an incurable connective tissue disorder. Connective tissues are things like elastin and collagen, they make up things like tendons, bone, organs, skin... really effecting about 80% of cells/structures in the body.

EDS has many forms that affect each person differently. The big scary one is vascular(life expectancy 48), the really common one is hypermobility (range of symptoms, normal life expectancy) and there are many more.

As for me, I'm somewhere in the mix. I do not have any of the known vascular gene defects( YAY ). I do have a collagen gene defect that has never been seen before---> Two things with that: 1. The genome is HUGE so that's not that big of a deal. 2. you can't have a diagnosis with out any other cases. There just isn't enough information to know if that defect is or isn't causing my health issues( !frustrating right! ). The Geneticist did confirm that this particular gene does work with the genes that do make the vascular eds, and could definitely have some hypermobility side effects. My defect/mutation fits with what we have been seeing with my health. She made sure to reinforce that we can not confirm this is what is causing my eds but we can't rule it out either, "hopefully we will know more in two years"[small aside: the labs program ran the change and found it to be "probably harmful" for what ever that is worth]. Also everyone repeatedly went over the fact that this has a 50% chance to be passed to children(good thing not having kids was the plan anyway). There have been (only)two papers that talk about people with a defect in the same gene, they ended up having similar, sometime much more sever symptoms(Bethlem Myopathy). So maybe some things to look out for but again, they have a different mutation than I do. What all this genetic info means is: not a lot of real answers.

As for my day to day, I live purposefully. EDS has made me pull back and look at what is important, I try to make what I do really matter. My energy has become so valuable! Because my mussels work all day to hold me together, and my body is constantly healing all the damage that happens, I'm exhausted a lot of the time. This is painful but most days are a lot like having the flu: really achey and tired. Now when things do dislocate(go completely out of place) or subluxate(just go out a bit)the pain is much much worse, mostly because it is pulling or ripping other tendons, and sometimes whatever is out of place can pinch or grind on other things. I'm pretty good a getting things back in place if they go out, but if they just are lose and grinding there is not much besides external reinforcement that you can do. The new annoyance is I have some tendons snapping, like in the arches of my feet an my hands(this fits more with the Bethlem Myopathy than EDS but again unknown mutation). When I do get energy I tend to go a little overboard but these infographs have helped.

Bry and I work on lots of things that help me live a happy normal-ish life. Lots of splints, ace bandages, supports(some homemade), blankets, hot packs, good chairs and shoes all help. If anything gets too bad I have a good doctor that we trust. She understands this is an incurable disease, so is good at helping with quality of life stuff. She is helping me with my weight (less weight on my joints, less stress on them). My heart does some fun things that we are keeping an eye on (I get another halter monitor this week). The best people in my life have made me swear to get an MRI if I have stroke symptoms again. I have little tricks like painting my toenails so I notice if my feet aren't circulating(please let me know if my feet are purple, I don't always notice). Neck pillows for long drives, and a pill organizer because even at home, life is still crazy enough to make me forget if I need to take my pills. So all and all I am blessed to have the love and care I have had so far. Also when we finally get settled at our next place, I'll get a good team of people to look after individual things like physical therapy(which may help but will take years) and a heart specialist ect. Till then I'm still working on the invention, taking classes and crafting and playing lots of video games. WOW is a really good adventure on days I can't leave the house.

So here are my requests

1; Let me vent. I'm going to have some bad days, I need to process this stuff, talking things through can help so much! It's not the end of the world I just need to get it out. Trying to keep all this in can be a poison. Please don't feel like you should have an answer (the doctors don't even have one) just be there confused with me. The Most Important thing you can say is that you're with me! It is so very isolating to not be able to do a lot of things. I have had to give up things like rollercoasters and 5k's and most outdoorsy stuff, but those are things we do as friends so as long as I get to whine about it from time to time with you, I'll be just fine.

2; You don't have to walk slow but I will. If you want to go somewhere with me PLEASE be okay and supporting of my speed or lack there of. I need a cane some days, not always, but I'm definitely not going anywhere fast. This is important in our society, a society that is in such a rush everywhere they go. It's impossible not to hear people's comments about being stuck behind the "slow person", in the grocery store or leaving the theater. People that roll their eyes after they impatiently wave you to cross the street in front of their car when they see you limp. So I guess the term is ableism... I don't know how I feel about the term, but who hasn't heard the phrase "if you don't have your health, you don't have anything" "what, are your legs broken?" and other comments about work ethic relating to one's value as a person... so yah, I'm slow. I'm still working on being okay with that... you can help :)

3; Ask questions! This whole post was brought on by a friend being really concerned that she scratched me(you know when you go to hug someone and it's like everyone has too many limbs and awkward happens). This made me realize I tend to only post the really good or bad things, not necessarily the important things.

4; Don't make me stop! If your concerned about me (awesome I love you too) and really think I should stop/go home/not even try, well I'm not dead! The easiest way for you to think of me and my health/limits is as a rocking 80 year old grandma. I will cook, bake and love you with all my heart. For the most part I can and do take care of myself but if we are out in public, a place to sit is really appreciated.

5: Keep being you! I am a firm believer that all hard is hard! Your hard is important to me, please keep sharing your life. We all are going though things and mine aren't any harder than yours. So thank you for taking the time to read this.

Now just some silly memes and EDS related links

My skins falling off, watch out Bryan!

Just some random eds links feeling odd things

It's okay to cry

A post from Facebook today;

Yesterday I cryed a lot. Chopping carrots for the cowder I had to tell Bry if I started crying it wasn't that I couldent do it, it was just vary had( and started crying telling him this), he like the awesome person he is said " what can I do?"  I told him I needed to do this, and that I'd be okay, not to tell me to go sit down or stop. So he didn't he was just the best sous chef ever! You see its just so much work to keep my knees from giving or going backward, not dislocate my wrists, not roll my ankles ext... The overwhelming effort it takes to hold all of me together, and as always attempt to have good knife skills. I immediately made a joke that I should have weighted till the onion to say anything so to hid my tears 😂 because really I was okay. I was (with help) getting to do one of my favorite things in the world, cook with my best friend. Pain is exhausting, I am fatigued a lot on the bad weeks, but I'm still me. I still have the attention span of a nat. so yes I get board of reasting and have to get up and create! I need it it's part of who I am, and the chowder turned out great. So if I do start crying its not all bad it's just all that pain and  exhaustion finding a way out cuss I've been to busy living! Also 100 husband points to Bryan for not just waking up to help me(on a weekend none-the-less), but letting me cry. It's a strange thing when a man lets a woman cry and be feelings with out have to "fix it" just loving with her in her tears. That support really helped me all day. So yes today is my favorite day but so was yesterday because as always ( even in the pain) I feel overwhelmingly blessed. Also thank you all for being my friends, and going through posts like this. I know it not the average Facebook stuff to share ones struggles but it's where I am now and we all know I'm way to brutally honest.

Salmon Chowder

So I made Salmon Chowder and it turned out pretty good.

1 onion diced

2 cloves of garlic diced

6 carrots sliced thin

1 tablespoon butter

Sauté over medium high heat for about 10 minutes add

6 medium potatoes diced

Continue cooking, stirring occasionally till the potatoes get a bit of color add

1 can chicken stock

3 Tablespoons of worcestershire sauce

3 tablespoons cognac

3 Tablespoons port

1/4 teaspoon corse ground black peper

Cook for 10-15 minutes medium high heat till you can easily poke a fork in the potatoes turn the heat down to low add

2 bay leaves

1/8 teaspoon(2 pinches) ancho chile paper

1/8 teaspoon pumpkin-spice (could not find the old bay and believe it or not they have a lot of the same ingredients)

1/4 teaspoon paprika

1/4 teaspoon spicy brown mustard

2 Tablespoons butter Gently stir, this lets some of the starch from the potato thicken the soup. once the soup has cooled to a mild simmer add

2/3 cup heavy cream

1.5 lb salmon cut in 2 oz chunks

1/4 teaspoon parsly

Cook till salmon is just pulling apart when stirred. Remove bay leaves, salt to taste and serve hot.

Also no fancy flatware here, when I make food its to be eaten so not a lot of time was spent on plating or photography, but it was !tasty! and thats what counts. Also the having EDS make everything complicated so just making chowder was my accomplishment for today. A big Thank You to my husband for helping so much that I could even try this :)

Growing Wasabi in an AeroGarden

Each year about this time my husband and I sit down and order seeds for our garden. Me as a culinarian wanting to grow as much of our food as possible. My poor husband trying to keep me in line with how small our garden is at the place we rent now. this year we were both pleasantly surprised when our favorite place to order plants, Gurneys was offering Wasabi. You see one of the first dates we when on was to sushi. In the midwest back then sushi was not a thing many people liked or would even try. We had both been exposed to it in the past and loved it! So to find someone that would go to sushi with you was pretty cool. Our love of sushi continued through me going through culinary school. I learned how to make real sushi from a guest chef that came each year from the best known hibachi place in town to teach sushi to our program. I of-course have done tuns of research, and I even gave one of my speeches in my communications class on sushi. All this to say we found out that getting real wasabi in the USA was harder then silk in the middle ages! Now time ofter documentary we kept hearing how bad american wasabi is and how the real thing is hot not burning with a floral after taste. You see the stuff we have here is just green food-coloring and horseradish, a relative of wasabi... Much like President Obama and Dick Cheney are relatives.... I digress. We ordered two little wasabi plants. Me with only the knowledge that wasabi is notoriously impossible to grow and that a few years earlier an east coast chef smuggled some wasabi tubers to the states hidden in his babies diaper, before then wasabi was unheard of here. Well it seems like the east coast is a good start for wasabi as it need shade, controlled temperatures, organic heavy soil with good drainage or a creek side with some flooding but not so much as to rot the delicate roots. Mist and fog are a plus just don't look at it the wrong way or it might die.... okay the last part was an exaggeration but when you read in to it its not too far off, and look in to it I did. this was one of the more complete guides on growing wasabi, it will give you the basics.

How were we going to accomplish all this in the Midwest? With our 100+ degree temperatures in summer, floods in spring and good foot of snow in the winter. Well we thought back to an old Christmas gift the AeroGarden. It was great for our basement that had no windows and for me in the long dark weeks of winter! Like most other people with the basic herb garden the basal took over and was the shining green emerald in my basement. So after more research and finding that they now have bowls for growing other plants(that don't fit our original model) We decided on the MIRACLE-GRO AEROGARDEN BOUNTY ELITE and the AEROGARDEN GROW BOWL AND STRAWBERRY KIT FOR BOUNTY ELITE GARDENS So far so good. The plants came looking much hardyer then I would have expected. The AeroGarden was super easy to set up and adjust(I just put the strawberries in our garden outside). With the grow bowl it always showed needing water so I called and they said to remove the little bobber and now it's happy. I keep adjusting the settings based on how the plants react and the more I learn about wasabi. They are putting on some stress growth but not too bad. The happy balance we have found so far with the AeroGarden setting is a 2 minute water pump every 58 minutes, with the light a foot above the plants, on for 10 hours from 7am - 5pm. Now this is a lot of light! Wasabi is a shade loving plant you read this over and over but ours was still reaching for the window with anything less. Our solution was to use the same privacy window film that was already on the window that the plants were growing towards, in my mind the plants were approving the film not taking to much UV from them. We took some of the film and folded it over and stuck it to it's self (very hard to do with out a tun of bubbles, but the spray it comes with really helped). I cut it to shape and we placed it over the grow guide rail that came with the AeroGarden. Now that we have the ?shade/ light-defuser? on, the plants are super happy and growing well. I'll post more later as we they mature seeing as it takes 2 years to develop a tuber. 17-5-16

Up date photos

End of May

June

PS The poor plants got shocked when we were away and our house sitter forgot to water them. They are still very much alive and Huge but I'm going to wait till they are looking a bit better to post the photos.

After the not getting enough water and a major cutting bock of most the damaged leafs.

It put out a lot of these taller shoots and stress flowered.

Still recovering but now so big it goes though about a salon of water in two weeks. so we added a extra tank. Dec 16

not quite back to size but getting there! Jan 17

May 2017 update: The Wasabi is still growing strong the biggest challenge is keeping enough water in it. We go through this bad cycle of adding water then a couple of weeks later the whole plant goes all floppy and it needs more! Then the wasabi stress grows (using more water then it would normally need) with lots of flowers and tuns of new growth, then I have to clean up the dead leafs(about half as much as shown on the plant went into the trash before this photo). Then we add the monthly nutrients and repeat. So basically this is a pet more then a house plant, but one that I'm pretty proud of. Three notes this far in 1, we are going through almost a gallon of water a week, and with the AeroGarden you have to use distilled water, so the cost of a pet wasabi is something to consider. 2, you have to clean up the dead leafs every month or so anyhow because any extra cover shades the growth medium and promotes mold, so if you see to much shade or dead plant matter get it out of there! 3, Flavor: The leafs (witch are edible) are pretty gross, if you try the young leafs the sappy bitter flavor isn't as bad, but they are Not going on anyones salad! However, you do get that floral, spicy but not burn kind of tingle note at the end of all the leafs, so I'm pretty excited for the rhizome... witch I have no plans of harvesting any time soon... again this became a pet at some point...

Children Rant

Child free is the new PC for the old childless! But I still feel that's not the right way to say it, you see your life will never be child Free between nieces, nephews and your lovable breeder friends, kids will be in your life, and in that comes the awkward balance of the endless prods of "when are you having kids" "you're next" "time to start a family"(like two some how will never be a family) "are you trying yet" I always want to get snarky with this one and go all off caller and say "thanks for asking about your grandsons rate of penetrating my vagina!" But alas I still play nice. then when you answer, the forceful shaming starts: "you'll change your mind" I think of this like knowing your gay I knew when I was six I did not want kids, it's who I am! "what if your spouse wants kids" "but The Lord said go forth and multiply" "what if when you're older your spouse resents you not giving them kids" implying that you are to dumb to talk to your spouse before this nosey random relative. This is a big cultural issue no means NO people! Do I really have to pull out the shocker "I hate kids" to shut you up? I don't really hate them but in the last 20years it's the only thing that has remotely gotten you off my back! Here is the truth I love my nieces nephews and my friends kids are a big part of my life. Dinner with the girls is now dinner with my friends and catching up with their little ones(that are quickly getting taller than me). So how does a person that has No desire to breed walk the line of happy aunt with out the world instantly assuming your secritly pining to pop out some crying stinkbags of your own? Well you don't! Do what makes you happy and when they push, walk off. laugh at them or get creative about it IE "I love kids, yah I love sending them Home" "we are just so happy getting a full night sleep" "just because I'm a decent person to kids doesn't mean I want one, I'm a decent person to snakes and spiders but I don't want them in my house!" "What are you talking about I am a great mom to my dogs, but it helps that I can kennel them and Leave!" My stand by is a simple "I was ment to be an aunt" it inplys purpus in a respectful way, with out any of the condasinding know-it-all they repededly shove at you, and some how reassures there need to believe children should be worshiped.

Pottery Chess Set

So if you'd like to try something similar some time this is what it took to make this full chess set and bored for my hubby for Christmas.

First thins first, I did a tun of research on different sets and options I found lots of simple options on pinterst but I had to do something unique, I saw some animal and nerdy pieces but I decided to go with animals: Dogs VS Cats. I knew I could do mice with the cats but it took time to decide on rabbits for the Dogs pawns.

Then I had to work on size and workable shapes so I printed out a paper with chess pieces on it and cut out each piece, then marked out the size of each of the pieces and sketched out individual unique art for all 12 different pieces:

2 kings Lion and GrateDain

2 Queens Lioness and Husky

2 Bishops Russian blue and Greyhound

2 Knights Bowing cat and Hyena

2 Rooks Cat on pillows and Dog house

2 Pawns Mice and Rabbits

Next was to cut out the drawings and make them 3d in clay, I cut out each drawing and an extra in card-stock incase the clay was too wet and destroyed the original. I rolled out the clay to just over an inch thick and set each cut out on the clay and with a x-acto knife cut out the shapes(much lick a cookie cutter would).

1 fore each King and Queen

2 for each Bishop, Knight and Rook.

8 for each Pawn.  

Each time I cut a piece out I carefully shaped and sculpted it into a semblance of the animal I was trying for, really this was the most painstaking part of the whole process (it killed my hands). Then I set them all to dry and be bisque fired. Once that was done I started working on the chess board by rolling out a sheet of clay 1\2"thick and just over 14" squared trimmed it to size, marked each of the 8x8 grid with a ruler and set it to dry and bisque bake.... Full disclosure the fist bored I made was to thin and and brooke to pieces before it even dried so I went through this process twice. 

After supper stressing about it all making it though the kiln they all came out looking great the board was a bit warped but all together for clay it was a miracle that it all made it through.<p>

  From here it was just wax coat the bases of each piece and glazing them, for the board I painted the wax on the bottom (this keeps the glaze from attaching the pieces to the kiln)I did a coat of a light gray wight glaze on the top, then I panted on 3 coughs of glaze on each of the odd squares to make the checkered pattern with some dark greanblue, I also put some on the edges just to finish the look. Again it was time to sweat and pray that it all would make it through the next kiln.

  A week latter I went in to the lab and picked up the whole thing !It All Made It Through! after getting it home and setting it up some of the pieces rocked a little witch was fine cuss to finish the set I put eva crafting foam on the bottoms of everything now it looks grate and my hubby is crazy impressed!

Well I hope this inspires you or helps you get a better understanding for your next craft.

The Inventing Process: According to google and my lifes happenstance.

So I had an idea and we my husband and I are going to try to make it a reality. from time to time I'll come on here and update were we are to give a sort of timeline

fall 2013; I had the idea I have many all the time. *We had just got a cat and were dealing with the all the hassle of cat litter. now I grow up with several cats and it was alway my job to scoop the poop so I have spent far to much of my life doing just that. as an adult living in the 21st century I just could not wrap my head around this rally being the only option, the gears in my head started turning and I could not get the idea out of my head. I looked up what other options were out there and just could not buy in to any of them most only did half of the job or just made a bigger mess to clean up.

spring; 2014 refined it enough to start to really believe in it, research what to do next. *I started looking in to what it tacks to get a patent the difents between a patent and a copyright or triad mark. Start a journal that i sing and date each time i work on the project. work on finding someone I trust to get answers about Pattens

march; call patent attorney, more research. *veary nice upfront with the real cost a realist $10,000 to get a patent and at leat two years before you have it if you get it, some one can alway turn something in a day before you and get the patent first.

April; meet patent attorney, they do patent such. more research. *Patten such, basically does it already exist if so don't wast your time. $1,200 one of the most important starting steps! Always Google to see if it exists before you do anything else!

May; It is a unique idea! more research. *though there are some automatic litter boxes now work like mine or the way mine dose this is when thing start to feel real the gravity of the commitment to bringing this to life sets in at the very lest this is a five year commitment!

Holy cow what now? more research.

Find engineers! more research.

More research, well crud someone else is trying to develop in the same market! Edasen nation is a inventing website that focus on solving real world problems that they know there is a market for, this is when i found out that they were doing a call out to salve this exact problem, this can be seen two ways 'All of the internet vs me" or "the people with the nonie to know a good market just confirmed I'm solving a need" I choose the latter.

patent attorney suggest moving forward with patent. more research.

meet with engineers, more research.

June; start working on domain names FIAL! work harder, find a great name, its being sat on, put in an offer and wait... more research to the tune of about 10,000 names....... this is a helpful page for giving you way to many options http://www.leandomainsearch.com this one is much better for less options http://wordoid.com

more helpful sits when making a domain http://www.bustaname.com/help/video http://www.rhymezone.com/?loc=bar http://www.scrabblefinder.com http://www.wordsmith.org/anagram/ http://wordoid.com http://www.valuate.com 30,000 names latter we have a website.

8-17-14 We are patent pending!!!! The world is big and we are about to jump in feet first, I've spent the last week at Gen Con and really enjoyed trade day. I feel a little better prepared for running our upcoming Kickstarter and my head is spinning with all of the things I've learned and how to apply them. Also this is a great link on attaching Facebook to Twitter http://thinkingoutsidethesandbox.ca/how-to-connect-a-twitter-account-to-your-facebook-business-page/#.U_FM8FZd78s

8-20-14 start back at school tacking an entruprnural class to help me get more of a handle on things.

August 2014, consult accountant on llc vs s corp ect they surest for us LLC

August 2014 make a first pick video and finely show the world what we have ben up to

September 2014: find a local incubated and joint their pitch competition.

September 2014: refocus with engineers on how the guts are supposed to work, end with simplify for better quality.

I've moved... again.

I've moved 19 times it's not fun, but you get really good at making anywere home, the problem with wanderlust is you don't know what home is. Chasing the sky is romantic, but all it is is running away. The best cure I know is be your own home, feel safe we're you are, with who you are and know your needs, once you are at home in your self surround your self with what makes you happy/healthy then travel the world. Home is a metaphor for safety and security it's something you can take with you, but it's also some thing you can build up and come back to after a long journey (like a privet battery with all the things that recharge you).  

The new face book game.

15 random facts about me: 

1: I'm an autodidact.

2: I've been happily married to my beat friend over 5 years but still count the three before that as much of the accomplishment. 

3: I have 4 out of 5 forms of dyslexia and have DNA correlated to  dyslexia.

4: I could not read till I was 12, and still find walls in my brain that only time will brake no matter my effort or dedication it just slips away(witch is maddening, till I remember all the other gifts it affords me). 

5: I'm simply bad at many things IE shaving and seeing clear things like plastic.

6: I'm simply good at some things IE seeing something crafty then doing it.

8: My love sing is time spent.

9: Any day I would prefer to talk on the phone over texting( to many things are unsaid in texts).

10: I adopt everything/one if I can feed you or you need on ear I'm here for you.

11: I get hurt a lot by letting so many so close but it's who I am to love.

12: boundaries are my new thing, I will offer much but within what my health allows, I have no space in my life for selfishness or negatively (Bry calls me lawful good).    

13: I stay busy, I have a blog, I have a body image health page, and I have a Vlog. 

14: I am happy, I have learned hard work is good work and apply myself daily to the good work of being positive.

15: I am endlessly proud of my friends, as they grow and change I see some of the parts they have had to hid to survive come out and make them amazing people, many of my closest friend are people I rarely get to see but no matter the distance they still light up my life <3

If you like this I'll give you a number feel free to try it or not but I'd love to know more about you 

Sleepless

A year and a half of my husband on his CPAP we have learned a lot: he starts getting crabby it gets worse, I ask how he's sleeping, he tells me his mask is giving him troubles at night, I order new caissons for his mask one for now one for latter, we find out that one last about 3 months if you clean them right. I learn what to look for, he learns its okay to tell me he's having trouble or needs something. Okay we are getting much better at this...  Friday night the CPAP Stops working!!!!! It's the weekend and all health care places are closed! Okay well I can order one online and get it rushed here overnight? We try, Saturday we here nothing, Sunday we here nothing, Monday and Bry is a zombie, thoughts are unclear, simple things are to complicated, frustration and anger are all that come easy to him. He has gotten an email saying he has to have a prescription  before they will send his CPAP we think no big deal will call his doc get it faxed over and only one more night without it. No his pulmanolagest refuses to send the RX she has not seen him in a year and he's out of state now.... no advice, no help, no general health concern, she just flat out will not sing it! 20 phone calls and going to a healthcare supply  store and no one can help us with our the RX. I call the pumanagests office again the receptionist is rude really rude, but can not answer my question of " can you tell me it would do more harm for him to have it than him going with out" so she transfers me to a nurse(an angle of kindness for all I know) she here's me out  but can't find a way to help but offers to take it directly to the sleep doc when he gets in in the morning  . The next day we find a doc that can take him  here, eventually, and put him on the cancellation list. By this point I'm not letting Bry drive he fights anger all day and works crazy hard to tell me how much he appreciates all I'm doing, all I can do is laugh when he try's to complement me and it comes out as "you'll be a crazy old coot when your old"  he loves me and is saying I love you thank you,  it just come out as crazy old coot. That afternoon the new doc office calls they "have a 7:55 am opening tomorrow do we want it?" YES!!! If its on the moon we will be there! 5:00pm that night the old doc office calls the pulmanolagest singed the RX no explanation Nothing! We still keep the 7:55 appointment. they are all wonderful at the new doc's office but don't have a CPAP he can use they send us home with the hope that the one in the mail will be here soon(still not here). then we get a call back at noon they found a loner can we come by at 1? YES! So 1pm we head back and Bry gets a loner Cpap!!! A week later and Bry is still catching back up on sleep. Life is much better, Bry can be happy about things and think straght, we still do not have his new Cpap or his old one but as long as he has one I don't care! This is what it's Really like living with sleep apnea, completely treatable hassle on a daly basses,  that makes things like travail or camping very difficult but you Never want to go with out!!!