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10 years!


StaceyYount
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:D It is 10 years ago today this illness brought me down and into my house and bed. And still 10 years later my world mainly exists of this room and this bed and trips to doctors. How can that be possible??????? I was not able to sleep because I have tried to not think about what 10 years really means but last night it hit me and I just can?t believe it. This can?t be a life and to be honest I am even to weak and to headachy and just to sick to really type and scream what I want to. I hate this, I hate feeling like crap all the time , I hate people not understanding, I hate the time I have lost, I hate not feeling like me, I hate pain (duh), I hate that I am here alone while everyone else is enjoying life. I hate that I can't even walk to the fornt door without almost fainiting on the poor delivery person. I hate that even going to sit outside makes me so tired I want to cry. I hate losing hope that this isn?t all my life will ever be and that this is all Jims life will ever be. I hate that he is so unhappy now and I hate that right now I have nothing that helps me really. And instead of getting better this year it has actually been a downhill slide. The thing that gets me more than anything is that though I have been much worse I still am not even back to how I was when I first got sick. And that was awful, after 10 years I am worse! IS this ever ever going to go away. One thing my wonderful husband did say was Well you have lost 10 years but at least you have survived through this illness for awhile I wasn't sure. And That is true. But I want a life back, I want to feel better, I want to be able to do things, I want people to stop feeling like they have to manipulate me to get me to do things because they don't understand that the days I feel like doing things I do and can but the days I can't I can't.I hate that I can't be a help to my sister and Mom with my dad still so sick and I hate that I can't be there for him and go to see him more. I know I say this every year but I remember panicking because I was going to have to miss 2 weeks of school, when they told me that I got a virus on top of my bronchitis. Little did I know I would not be going back to school. And to top it off, my Doctor, the one who knew me and was so understanding and was my base is leaving. He has been my Primary care doctor for 9 years. He saw me through the worst when I was 84 lbs, through finally getting a diagnosis and through these years after. And now I have to start over with a new doctor and I am really scared about that. I have an appointment to see the traitor :) on Nov 8th and I am hoping he will be able to recommend someone and I am going to give him a piece of my mind how dare he leave. LOL. But god to have to explain all this to someone new. and then I mean most of the time when I ask Dr. G for pain meds he gives them to me a little stingily sometimes but always when I ask him when I see him. And the injections are sometimes the only thing that can get me through a headache and I know from experience that 1 of the other doctors in the practice will not give them to me and what am I going to do??????????? Jim says we may have to try a pain doctor again but then you have to try all these new things and I never understand is if I have found something that works and I don?t abuse it. Why I can?t I have that? Ok sorry did not mean to go off on that too.

If I had the energy I probably throw a pillow or something but I don't even feel like doing that!:)

Sorry for the long post but I needed to tell someone who I knew would understand.

So if you have any spare hope or strength can you send it my way, I really need it today.

Stacey

:(

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Stacey, I am so sorry this has been so hard. Some days I feel exactly like this. I just wish to go back 4 months. I was completely disabled, but I could at tleast shower and do my own care. I told my doctor if he could just get me back there, I'd be happy.

I'm glad your husband is supportive of you and so sorry you are losing a doctor you care about so much. I couldn't imagine losing my doc of 20 years, (although who knows what he thinks after that stupid neurologist) so you are dealing with a lot of grieving and sadness.

I guess it's like turning 50 or something. You need to grieve and then try and get on as best you can. You will be in my thoughts....morgan

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Oh stacey...

your post made me feel teary eyed.. I am soory that you have lived for so long w/ pots.. and sorry for what you are going through and have got through...

I wish that there were a way that I could wave my magic wand (SP? LOL) and make everybody here feel better.. so that we could all live our lives the way that we dreamed that we would before we got sick....

DO something for yourself that you enjoy.. something comforting.. watch a fav. movie.. talk to a freind.. shop online!!...

I know that I get discouraged that I cant really get out of the house to shop like I used too.. so I shop online... buy books and DVD's mostly....

I hope that all goes well witht he new dr.. for you.. pls. hang in there.. and remeber we all are here for you and we UNDERSTAND!! and love ya!!

dizzygirl :)

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I am so sorry that you are still bedridden after all this time. I dont know how you cope... i suppose in some ways you have no choice, but i still admire the fact that you are still out there looking for answers and new drs. Many people would just give up! Maybe the pain clinic is a good idea? good luck with it, hopefully with all the bad luck you have some good luck comming around the corner. *Hug*

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Sending lots of support and hugs your way. It certainly has been a tough battle for you but 10 yrs later you are still fighting, not given up and that certainly is worth a lot. I hope your doc can recommend someone who he feels will give you the same respect and care that he has over the years. :)

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Stacey, I am so sorry. I thought of you the other night and started to post. Remember your post a couple of months ago along the same lines? Well, I had that feeling the other night as well. Like, I had really only had one great year in my life. It was really depressing. But, then again I'm starting to have more good days. Don't get me wrong the past five years have been HARD. But mixed in with the difficulty have been periods of great joy. And by some miracle, I actually had a fantastic weekend this weekend physically. So, I do understand. But, don't lose hope. Things may never be better permanently but embrace whatever good you are able to have when you have it. I wish there was something I could say to make it better, that I could blink my eyes three times and make dysautonomia dissappear.... All I can do is to let you know that at some point we all feel so frustrated, angry , and depressed but realize there is still joy in life. Sometimes, it comes when you least expect it.

Carmen

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Thank you all!

It means the world to me to hear that you understand and you are offering support. I thank you and though there have been some tears , like now I will be ok. One minute at time until the minutes get better than I hour than 1 day until I am dancing!

Ernie I think that when we finally get our magic pill ( That is what I hope for too!) it should work for all of us huh. One pill and it all goes away and then what a party we will have!

Ok crying again so better stop but thank you and I will let you know how tuesday goes with the traitor! :)

Stacey

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Stacey,

I don't know what to say except keep living, keep fighting this illness. You may feel tired and weak, but you must have a strong mind and will if you have made it for 10 years with POTS. Keep trying different treatments -- whatever you can afford, or are interested in, so long as they are safe. I am going to try acupuncture again because I really haven't gone for more than 2 treatments. I know there's a small chance of it making me feel better, but it's worth a try.

I also keep thinking about when the POTS is going to go away so I can return to the old me. However, I can barely remember the old me. I haven't felt like the old me in so long (I'm coming up on my 2-year anniversary of POTS) that I can't remember her. I seriously don't remember what it was like to be able to breathe normally. That's what I miss the most -- not having to think about breathing, but just doing it naturally!

I think of you often, Stacey, and know you and Morgan and DancingLight and many others here have been horribly affected by POTS and other maladies. But we just have to keep trying to stay strong and at least mentally keep ourselves functional. You can be homebound, a fainter, confined to a wheelchair, chronically fatigued, etc., etc., and still lead a meaningful life. Try making a list of all the things you want to do, even if you don't think you can do them because you're too ill. Then try to think of ways to accomplish those things, and work toward them. I really don't have too many things on my list that I cannot physically do, except that I always wanted to be able to run a few miles without stopping. I cannot run, though, because the shock of hitting the ground makes me ache for weeks afterward. But I want to do some traveling, and that I can do, even if it's short trips, or day trips around my state, etc. And I want to watch my daughter grow up and share special experiences with her, and I am finding that those are often the ones that are found right in your own back yard. She loves just playing around on my bed and hugging me when I'm feeling exhausted. And we sit outside in the yard and watch the sun set in the evenings, or sit in the living room and watch the birds outside. Or we read together.

Hang in there, Stacey. We're all here for you.

Amy

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Stacey?Of course you have every reason to feel the way you feel and I am glad you have a place where there are people who can understand. I have only had a small experience with what you have been through and continue to face, and all I can say is that I know from my limited experience with severe POTS, that it takes such a tremendous amount of inner strength and character to manage significant chronic illness on a daily basis as you have. I don?t even know if I can imagine your struggles and challenges, but I think of you often, and I have much admiration for you.

I agree with calypso, that when forced to live within physical limits, we can still find life to be very worth living. There are also things I cannot do b/c of POTS?mainly hard physical things like serious climbing or running? and some days when there is a good deal more I cannot do. I feel very frustrated and scared, unless I can find a way to focus more on what I can do. But this is a lot easier for me than for you, I know that.

I hope everyone has seen your beautiful crochet work that is on the Faces website. It is an example of the beauty and love you have found you can create even when faced with such daunting disability. It says a lot about you.

I know you have been through many different treatment regimes, none of which have provided effective relief. I also believe that there will be medical answers. They are frustratingly slow in coming, but I do believe that there will be more effective treatment options for POTS patients.

Hugs, Katherine

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Thank you

I think it helps more than I can say to know that there are people out in the world thinking of me and understand. I will continue to fight and who knows maybe this new doctor will have new ideas. I can hope. The small things in life are important and a long time ago I taught myself to be content in what I do have. Not to settle but be content until things get better. Also looking to far forward or to far back is always a way to bring on the tears. But more than anything this time 10 years is such a long time and I am having trouble getting over that. But I will and I will keep hope but that may be a bit away. I am crocheting a bear for Dr. Galfo and will send Katherine a picture to put on on our pictures page. I wanted to give him something to thank him for all he's done.

Thanks for thinking of me and showing me I am not alone that helps. Your words give me strength!

Stacey

:)

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I'm a little late chiming in here Stacey, but I'm glad that so many others were here to lift you up and offer their support. It's only been 1.5 years of POTS for me and I can tell you there have been many nights that I wonder "how I will be in 5 years from now?" or what will my condition will be like when I'm 60?...and worse yet, will I even make it to 60? Then I look inside my heart of hearts, and I know I will continue to face the challenges each day brings and enjoy the small triumphs and take pleasure in the "good" days. I have learned to make reasonable short-term goals, and also focus on "what can I do today." If I think about all of the what-if's it drives me crazy. I do believe though, their will be some great medical advancements that will help our condition.

Ten years is a long time to live with this, but you are still living and you have a purpose here on earth. I'm sure that even though you are limited in what you can do, that you make a difference in many peoples lives - including the people here on this board. Hang in there girl. I hope it goes well with the new doctor. B)

Hugs to you,

Gena

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Hey guys,

Sorry it took me so long ot get back. The visit to the traitor went bad and a hole opened up! But I do have a new name for a doctor and we will see.

Here is a picture of the bear I crocheted for Dr. Galfo.

bear7up.jpg

I was going to give a bit of a rant but I think I will start a new topic.

Thanks again for all your support it helped!

Stacey :-)

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Guest Julia59

Stacy,

I'm sorry you are so down lately-----this crazy POTs can do that. I hope that you can find a new Doctor that is understanding to this illness.

I understand that feeling of doom and gloom---I'm in one of those periods myself---I usually snap out of it and just go on living my life the best I can. I hope you find the magic pill-----Ernie and I will keep looking along with everyone else----and one day we will make history.......

Keep hanging in there.

HUGS

Julie :0) color]

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Julie,

Thank you. Since I know you are down too it means so much that you posted. I hope that we will find the magic pill and I hope that your days will be better soon.

Thinking of you too!

Stacey :-)

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stacy your bear is super CUTE!!

I hope that you and Julie feel better in spirit and body soon!!

Big HUGS to you both!

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Stacey, I just read your post, and my heart goes out to you. You are grieving the life that is lost to you. What you are going through, is normal (or so my therapist has told me). A person that is continually ill, and can not do just the normal things is going to grieve. I know that life is not fair. I think sometimes that why could this not happen to bad people, the people that go around hurting others. Instead it happens to people like us that would not hurt a fly and just want to live a normal life and take care of their family. I have only been going through this just over a year, and still am going through the testing phase,and most of the time I am scared, crying, or so depressed that I can not even think. We are all here for you, even if it is just in cyberspace. I also hate going to new docs and have to repeat the same thing over and over again. I told my daughter that I was going to make a tape and send to new docs for them to listen to on the first visit, so I would not have to go through that again. But I haven't yet. Hang in there, and when you do get the strength to throw a pillow, then just do it! A great big bear hug from me to you! ;)

Vanessa

:angry: It is 10 years ago today this illness brought me down and into my house and bed. And still 10 years later my world mainly exists of this room and this bed and trips to doctors. How can that be possible??????? I was not able to sleep because I have tried to not think about what 10 years really means but last night it hit me and I just can?t believe it. This can?t be a life and to be honest I am even to weak and to headachy and just to sick to really type and scream what I want to. I hate this, I hate feeling like crap all the time , I hate people not understanding, I hate the time I have lost, I hate not feeling like me, I hate pain (duh), I hate that I am here alone while everyone else is enjoying life. I hate that I can't even walk to the fornt door without almost fainiting on the poor delivery person. I hate that even going to sit outside makes me so tired I want to cry. I hate losing hope that this isn?t all my life will ever be and that this is all Jims life will ever be. I hate that he is so unhappy now and I hate that right now I have nothing that helps me really. And instead of getting better this year it has actually been a downhill slide. The thing that gets me more than anything is that though I have been much worse I still am not even back to how I was when I first got sick. And that was awful, after 10 years I am worse! IS this ever ever going to go away. One thing my wonderful husband did say was Well you have lost 10 years but at least you have survived through this illness for awhile I wasn't sure. And That is true. But I want a life back, I want to feel better, I want to be able to do things, I want people to stop feeling like they have to manipulate me to get me to do things because they don't understand that the days I feel like doing things I do and can but the days I can't I can't.I hate that I can't be a help to my sister and Mom with my dad still so sick and I hate that I can't be there for him and go to see him more. I know I say this every year but I remember panicking because I was going to have to miss 2 weeks of school, when they told me that I got a virus on top of my bronchitis. Little did I know I would not be going back to school. And to top it off, my Doctor, the one who knew me and was so understanding and was my base is leaving. He has been my Primary care doctor for 9 years. He saw me through the worst when I was 84 lbs, through finally getting a diagnosis and through these years after. And now I have to start over with a new doctor and I am really scared about that. I have an appointment to see the traitor :( on Nov 8th and I am hoping he will be able to recommend someone and I am going to give him a piece of my mind how dare he leave. LOL. But god to have to explain all this to someone new. and then I mean most of the time when I ask Dr. G for pain meds he gives them to me a little stingily sometimes but always when I ask him when I see him. And the injections are sometimes the only thing that can get me through a headache and I know from experience that 1 of the other doctors in the practice will not give them to me and what am I going to do??????????? Jim says we may have to try a pain doctor again but then you have to try all these new things and I never understand is if I have found something that works and I don?t abuse it. Why I can?t I have that? Ok sorry did not mean to go off on that too.

If I had the energy I probably throw a pillow or something but I don't even feel like doing that!:rolleyes:

Sorry for the long post but I needed to tell someone who I knew would understand.

So if you have any spare hope or strength can you send it my way, I really need it today.

Stacey

:wub:

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