Last day of the year

[corina]

So this is the last day of the year. And I'm still getting worse slowly. To stay positive, I thought of what happy moments I've been having this year, and guess what: I found them!!!! (I'm very glad I could, because my memory is real bad). My happy moments were the time that I went to the garden centre on my scooter and came home loaded with plants and flowers, the day that we bought our new van (in which I can ly down, while travelling) and last but not least our vacation in France (although the travelling part was very bad, I soooo enjoyed our vacation!!!!!!!) These things bring me a smile and make me realize that there still are things to enjoy eventhough I'm living a completely different life than I used to (and so is my family). And it helps me to face another year in which I don't know what to expect. Do you guys have happy moments that you want to share?

Corina

[AJVDK]

I know this is the best and hardest year of my life. I can say though I am happy I finally found out what was going on, and that I am not crasy! ( Well maybe alittle ) I am gald to Know what I have is POTS, NCS, and MTT. I know its not the best thing in the world to have but it nice to finally know!

I do get down from time to time, now I am trying to look at the postives. Each day I am given, is the day I choose to make it. Some days are slow, and time to rest and to slow down, this is the time I can think about what I want to do with my life, When I am lucky enough to get a good day, this is the day to to the fun stuff, to me anymore the things that make me happy are the small things. Like spending time with my husband and son, going out to eat, having friends over. The best thing that could of happen fianlly tookplace, a chance to look at my life. I was working 40-60 hours a week, bring work home, not being a very good mother, or wife. Now I can no longer work due to the POTS getting worse, and can no longer do alot of things, but the one nice thing about POTS is we have time, I have time to change, I have time make the diffenerce, I know it's going to be hard, but mostly I want to become a better person, and here is my chance. By going on disablity I am going to have a chance to start over. I know I can't do alot of things, that other mom's can, but I can be there for my son Blake for the 1st time. I can be a good wife for my husband, and I can become a better friend.

So for me the best thing that happen this year is that I finally open my eye, and want to change my life. The other great thing that happened is I found a great doctor will to trat me and make sure I get the treatment I need.

Happy New Year to you all!!!

Amy

[Jacquie802]

There isn't one special memory that sticks out from this year. I have learned to be alot more thankful for the things I have/can do...Waking up in the am and being able to get out of bed, having a good day where I feel very minimal symptoms, and being with family and friends. Sure I have lost alot of friends, etc. along the way but atleast I know who my real friends are. I am sure thankful that I have found this board, I truely don't know what I would do without it. Cheers to everyone!

[michiganjan]

The worst thing so far in my life happend this year and that is my husband's diagnosis with stage 4b esophogeal cancer. Being told that this is not curable at this stage and that if chemo works at all, it would only buy him time was the worst news I have ever had to face.

The good news is that there are smart people out there working on both cancer and POTS. This gives me hope for both of us. In fact, it seems that POTS research is really going places at last.

The last 6 months have not been all bad. We had a lovely Christmas. I have learned that it is possible to have a death sentence hanging over one's head and still live happy. I feel grateful for what I have...time with my husband and the realization that my POTS may be my cross to bear but that I can bear it and still have happiness in my life.

[Ernie]

Hi Corina,

The postive things I got this year is to find some researchers who are interested in tested me.

I also got my electric wheelchair which gives me some independence.

I am getting more interested in photography so it is becoming my hobby.

Since I got my new wheelchair I have made new friends who can empathise with me (besides all of you on Dinet).

I am still waiting for my miracle pill and I might get it in 2006!

[Guest Belinda]

I am thankful for this year that I finally found out what in the world was wrong with me..and made it through wiht only a few psych consults in the ER..LOL!!! I started having all this exactly a year ago in December..

So I am hoping this year will bring treatments and some remission of my symptoms!!

And I thank God..that I was able to realize I am not alone with this..

Looking forward to a year that is full of hope and not frustration like last year!!

HEALTH AND CURES TO ALL OF US IN THE NEW YEAR!!!!!!

Belinda

[hockeykid]

There is so much to be thankful for for me in the past year. Getting sick with POTS is one of them because I have really learned who my true friends are and what life is really about. I never really stopped to smell the roses but POTS has slowed me down enough that now I enjoy every moment. I have also experienced many things that I would never have done before. Like at my best points I have been able to go to a couple of hockey games. I used to go and forget that I ever went within the next couple weeks, but now the 2 games that I have gone to are deeply imprinted in my mind. Because I got sick I have gotten several things that I wouldn't have had before, like my little chihuahua that I love more than I could ever say and my own laptop. I hope everyone's new year is filled with much happiness, health and fun! Happy New Year!

[dizzygirl]

hey good topic corina!!

well i have alot to be thankful for this year....I got my power wheelchair. and am on a waiting list for a handicapped accessable apartment..I'm greatful for the docs that have stood by my and treid to help mew/ pots and everyhting else.. definatly greatful for Dr. grubb.. and am even great for the docs who were honest enough to tell me that. hey I'm sorry but there is nothing else we can do for you". b/c that gave me the kick in the pants to really start investigating diff. options available.. also I am so very greatful for the freinds and the support that i get from this forum.. w/o all of you I would be lost and very alone..

also for the the meet other program for people in PA.

I learned a bigger lesson this yr. too.. kind of is involved in more aspects then just pots.. but in a nutshell..I found that people who barely know me.. are more willing to help me then family.. and that god has given me support when I truly need it..(and i never am truly alone..when you neeed it the most somebody will be there.. wheather it sosmebody you know or a complete stranger..) from people who do and dont suffer from POTS.... this particular lesson also taught me that the doubts that I had concerning weather I could live on my own again.. were resolved in november.. when I had my EP study done... as that support I was speaking of was truly godsent.. and when people in my life (like family and boyfriend) wouldnt help me.. god showed me that there still is kindness and generousity in other people... and that i do have the courage to leave the situation that I am in.. and that I'll make it some how..and that no matter hwo hard it gets or how horrible things are now in the present..that there is eventually a light at the end of the tunnel.. and that tomorrow might be better.. and that this too will pass.(even if It takes a long while)

sorry bit of ramble there... but I hope i explained what i was trying to say w/o totally being off topic.. as that lesson was much more intertwind then just pots.. its one that come from deep with in the heart and soul of a person...nothing like some courage and strength to get you thru the day!

I'm thankful that i can still read for a few minutes here and there..

there are lots of things that I'm greatful for this yr. but those are a few of them..

so greatful for all of you!!

have a happy new year!!

HUGS

LInda

P.s... i am also very happy and greatfull for my 3 1/2 yr old Goddaughter..kamille.. she is such a sweetheart! she understands in her own way that when aunt Linda's heart hurts.. that aunt linda doesnt feel good.. and she si extra good.. and will lay on the couch w/ me or will watch cartoons or play in the room w/ me... I dont get to see Kamille as often as i'd like too.. as we now live in different states... but when I do see her.. its extra special...as kamille was born right after I got very sick w/ pots.. and she is the little angle that kept me going... and always brought a smile to my face... nomatter how badly i felt!!

Edited January 2, 2006 by dizzygirl

[Michelle Sawicki]

Love this topic, Corina.

2005 was a great year for me and I have so much to be thankful for...

- I am VERY, VERY grateful to the people who volunteered with DINET this year. This organization wouldn't exist without them. I want to say a special thanks to Nina and Melissa, who have spent countless hours keeping the forum free of flame wars and have been such a great help to members.

- While still dealing with POTS symptoms daily, my health was fairly stable and I had more energy this year than I've ever had since I got sick. Yay!

- I have a fantastic husband who spoils me rotten and a teenage son who is easy to get along with and still hugs his mom every night before bed. They understand the health challenges I face and are there for me when I need them.

- While all of you know me from DINET, I also work in the reference department of a public library. Since I love research the job suits me well, and I am very thankful to have it.

- In early spring "Gusto," a great dane pup, became the "little" brother to our belgian sheperd and pomeranian. He has eaten our shoes, chewed up the Christmas tree, stained our floors, gotten into the garbage, snuck on the couch and is currently eating us out of house and home, but he is also such a sweetie. He is huge and cuddly and such a joy. I'm so grateful that we got him, even if my husband had to wear his cowboy boots for a little while there because the pup had chewed up every last pair of his shoes. LOL!

- Last but definitely not least, I am grateful for all of you, the people who keep this forum a helpful and supportive place. The support you show each other amazes me at times, especially when so many of you are dealing with health problems of your own. Thank you, to all of you who have shown kindness and support to one another on the forum this year.

Michelle Sawicki

[Sunfish]

corina, you definitely get the post of the day award. it can be SO hard to keep the positives in mind when things are so tough but you're right that they can be found - no matter how "little" - and are important to remember. thanks for starting the thread. it's a good exercise for me (and one i might not have done so concretely otherwise) and i'm sure for others as well.

as many of you know, and as for some of you as well, 2005 has been one of the roughest/scariest for me yet. i know i'm not the only one, but in the midst of things, i do have a lot to be thankful for. here's a sampling:

-my family and the few close friends who have stuck by me

-the FMLA, without which my mom wouldn't have been able to keep her job and still spend the amount of time with me this past year for hospital stays, surgery, and day-to-day care

-this forum...where people not only "get it" but are definitely amongst those i consider true friends; the chance i've had to meet some of you "for real"

-my wheelchair, and the fact that i was able to realize that - for now at least - it means more freedom rather than less for me

-my LTD insurance so that, even though being forced to leave work wasn't what i wanted, has allowed me to pay my bills and keep my health insurance

-food...and more importantly the fact that on most days i can eat it! a year ago that wasn't the case.

-the fact that after 4 hospital stays in 6 months, i've managed to stay away from inpatient hospital stays since may. i still spend lots of time there as an outpatient, but no overnights...

-the fact that - while i'm not exactly out partying - i'm spending new years eve at HOME rather than in the hospital (not true last year)

-all those who helped me in my move from maryland and ohio, some of who i hardly knew

-my parents' willingness to put up with my stubborness in going it on my own in cleveland through their numerous 2-hr trips to deliver food, clean, do laundry, etc...

-special sweet surprise "thoughtfulnesses" along the way: a teddy bear from my mom's co-workers, a note from old family friends in the mail, food for my mom from hospital kitchen staff, etc.

-friends and neighbors who have kept czar (my kitty) happy & healthy when i haven't been able to; czar's cozy friendship and ability to appreciate my slower lifestyle better than anyone i know

-the doctors, nurses, and other medical folk along the way who have gone out of their way for me (and for others) through their care, compassion, and/or willingness to think "out of the box" while still admitting they don't have all the answers

-the moments i've been able to escape the limitations of my body while in the pool

-the people at school who have been there for me as i've had to begrudgingly acknowledge my limitations & those who have listened as i've tried to advocate for better disability accessibility throughout the university

-the hospital hospitality house in nashville (at vanderbilt)

-music

-books

-my laptop computer & the internet

-my mind & ability to understand a lot of the "medical lingo"

-my new CPAP machine and thus...better sleep

-the medications that, while not doing as much as we'd like, allow me to be a lot more functional than i would be otherwise

-last but certainly not least, God and the fact that He understands everything even when i don't

did i get carried away?? perhaps, but is it possible to be thankful for too much?? corina this reflecting actually brought tears to my eyes. but good tears. and i may be back with more (items for my list that is, not tears )

so yes, in the midst of a really rough year and an uncertain future, i DO still have A LOT for which i am thankful.

melissa

Edited January 1, 2006 by Sunfish

[corina]

thanks a lot for sharing this guys. It makes me realize we're such a strong "family". We're always here for eachother to listen, understand and where and when possible to help eachother. No matter how rough the year was, there were happy moments. It made me feel blessed and helps me to stay strong and look forward to a new year. I wish everybody warmth, a better health and a lot of happy moments this new year!

Corina

oh, and thanks for the award melissa, i'll cherish it!!!!

[taylortotmom]

2005 has been a BIG year

Jan. - Husband received new job with a pay raise and health insurance for all of us that kicked in the day he started with NO waiting period (even for me!)

March- got my port-a-cath which allows me to control the amount of fluids I can take AT HOME

April- Approved for SSDI after a two year struggle

June- found DINET (Medicare kicked in, too!)

July- Husband promoted with pay raise and we all moved to Florida!!

August- Youngest child started kindergarten so kids are are little more independent now

Fall brought many great memories with my kids (circus, fair, etc.)

A wonderful Christmas followed by pacemaker for New Year's.

Oh, and Student Loan discharged due to disability as well,

What a year. It is only up from here.

Happy New Year!

Carmen

[Guest Julia59]

WOW---nice to see some nice stories here.............

I'm greatful to have this place to go and vent my fears, my sorrows, and also anything good that pops up---and it does---here is some of the good things that has happened.

My son met a new girl---Carlie--------and he is happy this time, for the first time in years. She has a little daughter Kaela---18 months old. He's going to be in a play at The University of Toledo---it's a small part---but we are thrilled he's in it, and can't wait to see the play---The name of the play is, "Antigone" set in an ancient Greece. My husband and I are happy to have them in our life now.

Thankful for the friends who do try to understand all the crazy disorders i'm diagnosed with.

My husband does everything in his power to make me comfortable---and never complains about anything.

If I can't make dinner---he's happy to eat a bowel of cereal---in fact he is Mr. Kelloggs----------he could eat cereal three times a day---LOL----peanut butter and jelly is also fine. He won't let anyone disrespect me----or any rude comments about my limitations.

I've been having some set backs but I have learned new things from them.

I just found out my niece Elizabeith is coming to live in Toledo with her dad---my Brother James in late summer to begin her high school years in Toledo.

I'm greatful for my sweet animals---India (Doggie), Samantha & Spencer (Cats)---- along with all of you and my husband they save me from losing my mind during my rough spells.

All the Docs that did look beyond their safe box and take that extra step to help figure some of this out.

My family who stays together no matter how mad we can get at eachother sometimes---we just work through it.........

Thanks for helping me think of some of the good things in my life---------------

Julie :0)

[JaneEyre9]

What a fantastic post, Corina!

I am so thankful to be here and know all of you. I'm thankful that POTS isn't a terminal illness. I'm very grateful that i was finally diagnosed this year, because pre-diagnosis I was so sick and felt like i was a miserable failure due to my constant fatigue and inability to perform well. I'm so glad I live at home with my parents because it really helps to have people who will take you to the doctor, do your shopping, wash your clothes, bring you fluids in bed, and pay your rent for you! I'm very thankful for my close friends who have patiently listened to me, learned about my limitations with me, distracted me with fun quiet activities, and prayed for me. I'm thankful that my bosses have been very understanding and that they specialize in cardiology and are able to 'get' why I am sick. I'm especially thankful I fainted in front of everyone in my office because for a long time a lot of them thought I was making a big deal out of nothing.

Like Amy mentioned, I'm super thankful to get time to SLOW DOWN. I too appreciate simple things in life so much more now. I feel like a kid again...appreciating standing, walking, riding in the car, time with my friends and family like i never did before because before i was too tired and sick and everything felt like a chore. Now i'm free to sleep as much as my body needs and say 'no' when i physically cannot do something.

Also, i've learned how to be more patient with myself and with others.

Thanks for the chance to post this. I have been so blessed by all of you.

Kristen

[lthomas521]

My brightest moment in 2005 was reading about the research on the norepinephrine transporter promoter demethylation as the cause of POTS. Years ago, a friend of mine said that someday someone would figure out my disease, that there would be an explanation that made everything fall into place. I hope that this is it.

[Mrs. Glass]

When I read your post I really didnt think that I have anything to be thankful for, but I was wrong. So here is my list.

I am thankful that I have a family that loves me. My husband who works all of the time to make things easier for me, but still has time to hug me and kiss me and tell me everything is going to be alright. A daughter that is willing to give up her life to take care of me. My loving Grandsons who are so devoted to me.My Son in Law who is more like a son to me than most mother in laws can say. My Son who is going to move in with us just to take some of the strain off of the rest of the family and to make sure someone is here at all times.That I found my Son after not knowing where he was for almost 3 years. The food on my table every day. I am thankful for my home. It is paid for and no one can take it away from me. I am thankful for my devoted little pomeranian. She makes most days bearable due to her total devotion of me. I am thankful that I did not die in the car wreck. I am thankful for Dr Richards he kept on searching until he found out it was not my heart after all. I am thankful for my Therapist who is probably the most understanding doctor that I know right now. She pushes me where no one else will.I am just thankful to be alive right now. It is hard sometimes and some days I just want to cash it in, but I know that I wont. I am thankful for all of you on this forum who have been so supportive to me. Some days I would be lost with out your support. In a way I am actually thankful for this disorder, if it was not for this I would not know a lot of things that I do now. I try to take things as they come and i have to move slower now. I am not able to do much, but on some days I can still do something. Not always, but sometimes. It has opened my eyes to just how much my husband and family loves me. It has also shown me who my true friends are, only 2 have stayed, I was totally shocked, but the rest just dont understand why I cant go to church, and i have tried to explain but it did no good so they dont even call me anymore. It has taught me just how precious life is and not to waste a minute of your life on the frivolous things. It has taught me the true meaning of love. And how to let people love me. I never could before. IT has taught me about compassion, and patience and endurance. I am also thankful for the love of God, if it wasnt for knowing that God loves me I could not go through all of this. I know that there is more that I am thankful for but my mind has gone totally blank. I agree your post has been the best You have made me open my eyes to see what is good in my life, and I want to THANK YOU VERY MUCH . Vanessa

Edited January 2, 2006 by MightyMouse

[yogini]

Here is my list:

- Being able to reduce my meds. I started off 2005 on .2 mg of florinef and 37.5 mg of atenolol and I am down to just 12.5 mg of atenolol.

-Coming to terms with my POTS and no longer obessing over my heart rate

-Starting therapy and finding a wonderful and understanding therapist

-Exercising more and starting to work with a personal trainer

-Being able to take trips to visit family and friends and seeing my family over the holidays

-Receiving an award for doing volunteer work

-Being allowed to continue part time at my job for as long as I need. I thought they were going to force me back to full time, which I could not have handled

-Not losing the weight I want, but not gaining any either!

-Most of all my family, who know as much about POTS as me and have helped and supported me unconditionally, and my friends, almost all of whom have been supportive.

Thanks for your post, Corina. Writing this has shown me that I have a lot to be thankful for. Here's to a happier and healthier 2006 for all of us!

[MightyMouse]

I am most thankful for:

those that I love

my kitties

my health insurance

my health (yes, I know I have pots/ncs/eds yada yada yada, but most of the time, I'm able to cope)

--Nina