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POTS and more are bad, yet I am good


michiganjan
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My POTS is giving me a lot of symptoms, plus I have been off hormone replacement for 3 months so I am having hot flashes, sweats, chills, and insomnia on top of the dysautonomia symptoms, I can't manage 15 minutes in the grocery, my husband has stage 4 cancer and is dreading his next chemo which is tomorrow. I am working 10 hours a day at the computer to get my new business going. Plus my kids tell me I am having Thanksgiving and I hate to cook. We are having a huge invasion of box elder bugs that walk right around the window sills and fly around the house. There are millions of them sunning themselves on the bricks of the house just outside the back door.

And Yet . . .

I am quite happy. I got up from the computer this evening, went outside, and pruned a shrub WHILE WHISTLING! Earlier today, I kept taking breaks from the computer to run outside with a spray bottle of dish soap and a broom and kill box elder bugs. I must have slew thousands so far. I sing and have hot flashes while I annililate them. I love the sound of my broom going twack, twack, twack on the bricks. There are a lot fewer bugs there each time I go out. And go out, I will, every day until there are none!

So how come I can feel this good when things are crappy?

I think that in spite of the fact that my husband is very sick, he is still able to go to lunch with his friends and help me in my business. And I love Fall weather. And after working myself silly trying to market my jigsaw puzzles to teacher stores, I am getting orders and compliments on my product. Being creative must be one key to feeling good. And when I feel good I am not as bothered by the POTS symptoms and even the menopause symptoms.

There was a post earlier about what people on this forum do for fun. Many posted that they do creative things. Someone posted today on the cancer listserv I belong to: "When you are walking through ****, keep walking." I want to add...and do something creative at the same time.

Michigan Jan

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Good luck with the chemo today. You and your husband are in my prayers.

Keep singing and whacking those bugs. Good luck with your puzzles.

Just keep on singing and whacking :)

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Jan, What a wonderful post! You are certainly an inspiration to us all. I can only imagine what you, as a "cancer suppoerter spouse" are going through. My husband walks with you each step of the way! Each time I walk into the oncology center I am struck by the love you feel in the room from the patients, their supporters, their nurses and doctors. I can say that the first time I walked into the infusion area I was terribly depressed. I couldn't believe that I was finding myself there. After all, I didn't look like I had cancer. I felt guilty. But now I know that I am a fighter and will survive. But now I know that the room is filled with brave patients and their loving families going through their challenges together.

I can see how you get happy when you are engrossed in some creative activity. It seems to take your mind off the future and what that may bring and put you in the here and now and making a contribution--whether it be with puzzles or with whacking those nasty bugs and best of all, by standing by your husband during these difficult times. By the way, what breed are these nasty bugs?

Try to do Thanksgiving if at all possible. Have your kids help with table setting, cooking, clean up. Order a pre-made dinner if it is too much. Thanksgiving is a time to be thankful for all you have.

Stay focused and enjoy each day for what it brings!

Your dear friend,

Lois

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Hi Michigan Jan,

I am so glad that you feel happy! You are so right. Even when your circumsatnces are dark and cloudy there can be happiness. Maybe it's because being creative and maybe it's because you are open to see it, I don't know why, but I'm glad that you feel that way!!

Warm wishes for you and your husband!

Corina

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Dear Lois,

You say you don't look like you have cancer. You surely don't look like you have dysautonomia either. What a double whammy! I am glad you have your husband to help you get through this. In our case, while I am supporting Jeff, he is still taking care of me with my POTS. I am getting an appreciation of what he has had to deal with all these years taking care of me, and he is getting an appreciation of being sick for long term.

The bugs are box elder bugs. They don't bite, they don't damage anything, but they litter with their little spots of poop and with the mounting piles of corpses. They are associated with female box elder trees. I think they eat the seeds.

I called the window washers early this morning. I said please come and wash the outsides of the windows because they are streaked with soapy scum and smeared with bug parts. I told him that the box elder bugs had been conjugating on the windows. There was a pause at the other end of the phone line long enough for me to realize what I had said. I had meant to say they were congregrating there. Oh well, maybe they conjugate there also.

Anyway, darn few of them left this morning. We are off to the hospital for chemo# 6. Then Jeff gets scoped and scanned. He is dreading it...he has such hopes the cancer has gone from his liver and dreading more chemo if it is not. I will post when we find out.

I just sent a prayer your way. Cancer on top of Dysautomonia is a lot to cope with.

Hugs,

Michigan Jan

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Lady you are imppressive. You are really doing amazing. That must make you feel that you have a little more POWER or contol of things in your life. Dig it !!!! I hope JEff/? does well with this treatment Ihave been praying for him.

What is your puzzle e-mail address. Take care and enjoy!!!!

As for thanksgiving do it you have things to be thankful for this year. My sister in law makes the turkey the day before tastes great and not having this to do in one day is good. Then everyone can help. Take care Miriam :)

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WOW!! You are truly an inspiration for me to quit my fussing and live my life, even though I am sick and so are three of my children. You have made me realize that I am wasting my precious life complaining about mistreatment from doctors and the general misery of the symptoms. There's too much in life to enjoy!! I hope everything goes well with your husband's chemo. Thank you for such a positive post. I feel uplifted.

Melly

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Guest Julia59

Jan, you have an amazing spirit! You continue to forge ahead despite all the difficulties life has been shooting at both you and Jeff.

You lifted my spirits today. I really wasn't that depressed----but worried about a few things, and your post put a smile on my face and made the worries more distant.

One problem----i'm not very creative----so what to do.............. B)

One thing I love---and you might laugh----I actually enjoy searching the web over for medical research not only on dysautonomia, but other diseases that relate with ANS dysfunction, and the possible environmental causes. Health and science was my forte in school---I actually enjoyed those classes----and I can see it still carries over in my adult life.

Today I pass time by advocating & educating the public/medical community for patients who have dysautonomia, and hope that I can lend a little support for those who come to Toledo to see Dr. Grubb. In a way----(lending a little support)---is therapeutic for me as well. It helps me realize I could have things much worse, and it makes me count my blessings.

Regarding box elder bugs----my parents have them. They have a sandy type of soil---and they get them every year. Sandy soil areas are more prone to bugs of all sorts. We have Clay in south Toledo----my parents are in West Toledo near the Michigan Line. the only bugs that "bug" me are the spiders and thousand leggers we get--------creepy........... :D My Cats Spencer and Samantha take care of a lot of them. Spencer can catch a fly in mid air.

You keep whistling along-----------you are following the quote of Katharine Hepburn;

Your listening to the song of life

Julie :0)

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To Miriam,

I think you really have something there, Miriam, about feeling like I have power. I have been trying to understand why I feel so good so that I can use that knowledge to get me back to this state in the future when I get to feeling down. Yes, I feel like I have some power.

Julie,

I should have added to being creative, being of use. I think it is not only important to be creative but to be of use. The research you are doing is very valuable.

Here are 2 creative ideas. I was sitting at the cancer center today next to a bald woman wearing a beautiful crocheted skull cap. She said she found it at a beauty supply store. I was thinking that those who like to knit or expecially crochet, might make skull caps for chemo patients and donate them to a cancer center hospital. Skull caps could be stylish, more comfortable than a wig, and not as bulky as a hat in winter. It is one thing to deal with your hair falling out when it happens and another to have a volunteer at your treatment center say to you, "Would you like one of these? Volunteers knit them for chemo patients."

I also know a woman who sews beautiful burial gowns for premature babies and gives them to the maternity wards of local hospitals.

There are so many things we can find to do if we want to.

While I was at the hospital today, Jeff's cell phone rang and it was a reporter from the Detroit News wanting to do a story on me about the puzzles. So I did an interview from the hospital. SThe reporter asked if I wanted her to call me back later and I said, no, just fire away now. I went out in the hall to get away from the lounge TV and I started having POTS symptoms--dizziness and spacy in the head, so I sat down on the floor with my back against the wall. It was fine except for the zamboni that kept coming past . . .well it was really a ride-on floor cleaning machine but it looked like a zamboni with brushes.

I am glad my post was inspirational. I really want to share that is possible to feel good and be happy when things are bad.

Michigan Jan

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Jan

You are an amazing spirit and that is what this life is all about. Finding something when facing adversity to keep one sane and moving.

I agree that being creative is good for us an nourishes our soul and spirit. Keep up the inspirational posts, Jan. There are lessons for many of us.

Sophia

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Jan,

Glad to hear you've been able to keep your chin up. Most of these things are out of your control, so there's no use spending your time worrying and making yourself feel worse. You have a great attitude and I admire you for your courage. Keep smiling ... and whistling. Reminds me of Snow White, which I watched with my daughter yesterday, when they sing the "Whistle While You Work" song!

Also, I will continue to keep hope that your husband will turn around and improve. People have fought stage 4 cancer before.

Amy

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jan -

my delay in responding by no mean correlates with the degree to which your post really touched my heart & made me smile. others have already said it well, but your atttitude is great. not b/c you are ignoring the tough stuff that is going on but b/c you are dealing with everything and pushing on....wonderfully.

thanks for posting. i'm glad things are going as well as they are even in the midst of everything. and i hope the most recent doctor's visit brings continued good news.

keep on keeping on...

:P melissa

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jan,

i'm a bit late chiming in too...sorry!

i am grateful that you send an update our way...i anxioulsy await the news of how you and jeff are faring...and am always glad when you update us...

i thought so much about your post...and i was so so amazed by it all...

i know that you are a spiritual person...so i hope my comment here will be okay...but it is such a blessing that you are able to completey BE present with jeff and your business and be able to really and truly enjoy your time with him...and not have an extra helping of POTS symptoms to cope with. it just takes one thing off of your already full plate, you know?

i know when i am really sick (all of the time! oh well!) i feel so guilty about not being able to give enough to those i love...so i feel like it's just a beautiful thing that you can be with jeff right now and not have a POTS flare...

am i making any sense? or just sticking my little foot in my big mouth????

anyways, keep us posted...

and i am going to send you a quick pm for your puzzle website if that is okay!

many good thoughts coming your way...

emily

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wow jan i really admire you strength and courage. your spirit really shines through even during tough times..

its encouraging.. also i wanted to mention that I have some much respect for those battling cancer.. as it is a very rough road..I am glad that your hubby's chemo is working.. god bless you both...

also I really like your idea of crochetting skull caps for chemo patients.. for a few reasons.. one being that my grandma .. she died 3 yrs ago to cancer.. and I was fortunate enough to be with her when she passed.. she fought cancer for 2 yrs..but my point being that I have been wanting to do something for other cancer patients.. but I dont know what.. I think that that is just a wonderful idea... I love to crochet... and I dont think that it will be too hard to figure out how to do the caps..

so thanks for that wonderful idea...what a good way for me to "remember my grandma..' now I am all excited.. :P

god bless you both!

dizzygirl

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dizzygirl (and jan)...

they have patterns for making caps and such for cancer patients online...

i have seen ones for knitting (and it is probably in crochet too...i just didn't pay attention, b/c i only know how to knit!) on www.lionbrand.com (using lion brand yarn of course). also if you just type in what you want online, you will probably get a zillion patterns!

knitting and crocheting are the 'in' thing you know! :)

i am also knitting a prayer shawl right now as a gift...they are very popular too...

anyways...happy knitting/crocheting!

emily

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hey thanks emily!!

so crochetting and knitting are the "IN" thing huh? well golly I have been "in " since I was 12! LOL

I will have to check out that website

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Jan, as you know I have been wallowing as of late, but think I'm better.

I so admire your spirit, as well as Jeff's. I think of you so often and your struggles. You are a special spirit here on earth and I am glad I have gotten to know you.

I love to crochet, but can only do little things. The skull caps are a great idea, not only because they give me something to do, but make me feel I could do something. I'm going to the lion site now! Keep the faith girl!!! You are an inspiration to us all....morgan

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So that's it, then? The effect of my post is that we are knitting? I thought it was a good idea, but didn't think I would really do it because I am so busy getting the puzzles off the ground. But . . . If the two of you are going to knit, or crochet, then so am I. Somehow.

So if you find a good pattern will you share it with me? I have a lot of partial skeins of yarn in a bin in my basement, so all I need is a pattern and I can put them to use. Then I can take the finished caps to Karmanos where Jeff is being treated.

He had a completely black tongue this morning...really weird. Called the doctor who said it was from him taking some malox last night before bed and combining with the chemo. By tonight it looks pretty normal again.

Now I can laugh about it because it has always been me who has strange symptoms.

I almost fell off the happy horse today. I sat here in my p js all morning and afternoon and watched 3 consecutive episodes of Bonanza! I just couldn't move. However, I made myself get dressed and we took a walk in the cool air and I am better again. I think it is Jeff's CT scan on Wed. He is sick of chemo and we want this scan to show that he is clear.

Okay, knitting and crocheting sisters, I am joining the group.

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Jan,

You are too funny...and morgan you too...and dizzygirl!

Jan you were encouraging US to knit...so you don't need to be knitting! You are already satisfying your 'creative spirit' with your puzzles. :)

I don't think that I can take on skullcaps right now...simply b/c I have a long line of gifts/projects lined up (I don't really keep anything much for myself...I like the joy of knitting something for someone else...but it takes me SOOOOOOOO LONG to get anything done since I don't get to do much at a time....In my dreams I'm knitting baby afghans for charity and prayer shawls andn gifts for everyone who has gone above and beyond for me...okay, right!

Morgan and Dizzygirl...maybe we should post pics of our finished products on the Faces of DINET? That would be cool!

Okay, if any post got off topic I guess I did it here! :lol: Sorry...

Really though...it's about feeling connected. When we knit...we feel connected to eachother b/c we are all knitting and sharing this craft and it is sometimes the ONLY thing that I am able to do.

While I'm knitting tomorrow, I'll think of all of you! :)

Hugs, Emily

Can you tell I can't sleep??????????

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Jan.. we all deserve a break.. a day to lounge around in our favorite PJ's....

shoot if seen me you'd think that I was alwasy taking abreak!! I LOVE my pj's.. they are so much more comfy then regualr clothing.. that is most of the time too warm or constricting.. la..da.dee.la dada.. so my secret is out!! if I am house bound and dont have to go anywhere i am in my pj's! and if I take a shower I just put clean pj's on !!!!!! LOL HAHAHA! ((i reallly am not lazy!!)

I love to crochet.. my grandmother taught me how to crochet when I was 12 yrs old.. and I love doing it! it is relaxing.. but i cant crochet for long periods of time..b/c it makes my neck and arm/wrist sore.. so I have to stop alot then start back up...

another idea.. is quilting.. now quilting is ALOT of work..believe me... i made my little brother a quilt(he is 21 now..).. he served in Iraq for a year from 2003-2004. and I wanted to give him something to show him that I loved him and all that jazz.. well i started the quilt before he was deployed.. and it took me nearly the whole year to make too.. I sewed that entire quilt buy hand.. i kid you not! and did all the tying too.. well it turned out beautiful! It is big enough to cover a KIG size bed nicely..

weell when i gave my brother that quilt.. he was moved beyond words.. he just couldnt believe that I had done all that work by hand...just for him...it was a wonderful moment.. to give my own personal hero a gift from the heart that was full of my own tears and fears while he was away..

Mymymy went off on a ramble there...my point was.. that when my grandma had cancer she was often cold.. and lap blankets are often nice to cover up with.. again I realize that they are alot of work....

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Actually lap blankets could be quite easy if done from polor fleece and the edges sewn with a serger. However that takes aspecial machine. My frind started a foundation to make things out of fleece for charity. She has done quite well with it. I am going to suggest she do lap blankets.

Dizzy Girl . . .your quilt sounds fabulously beautiful! What an accomplishment.

Dancing Light . . . you are already engaged in projects so don't need to be making caps, either. The whole idea was to help us live with our dysautonomia by being creative.

Morgan . . . thanks for the link to the free pattern. I figure I can knit some after I get over this pre-Christmas rush of getting mailings out to stores to get them to order puzzles for Christmas. By December that will probably slow and after the holidays, I am sure I will have a sales dearth! So I will join the knitting circle as soon as I can. I am so happy that you think you are finished wallowing for awhile. I wallow too deep and too often. I am going to fight really hard to stay where I am now.

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hey dizzygirl!

i'm just letting you know i'm hanging in my pjs too! i LOVE pjs too! my mom just brought me home two new pairs and nothing makes me happier! isn't that nuts? maybe we should start our own knitted pj line? :) he-he. i'm wearing penguin pjs today....

i just had to share b/c you made me smile. my caregivers always tease me about not buying anymore pjs b/c there is no where to put them!

emily

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