Roselover

Wow, I had never read about this being a "family" affair.... but I sure have wondered. My mom came down with very similar symptoms about the same age I started. At first we thought it was Menopause, then she saw a Neurologist and thought it was MS. Several years ago, her Neurologist said he didn't need to see her anymore. She has recently admitted to me that MS has never been found. Now I am sick and my younger sister is sick. They can't find what's wrong with my sister. I am begining to wonder!!! I'll post a separte question about one of my sister's symptoms. My mom refuses to get more testing or see any new doctors. You've given me something to think about! ~Roselover

Thanks Linda, how sweet! You know, I often think about what the purpose of my life is when all I can do is lay around. One of my greatest purposes is loving my children. As they grow and need me less, I have come to realize that they still need my love and acceptance as much as they always have and that gives me something to do. And even for those of us who are not mothers or fathers, there are people in our lives who need our love- our forgiveness- our acceptance and it is something we can do from bed, a recliner chair (where I spend most of my time) or a wheelchair. Thank you for the reminder. Roselover

I found this article that I thought might be helpful. It's written by someone who has MS, but the ideas could be adapted to Dysautonomia I think. It's called "Explaining your illness to your kids". It's on a website that is called Rest Ministries, christian based, but the artilce doesn't have anything religious in it so I hope no one minds me sharing it. Here's the web address: article ~Roselover

Linda, I've heard others say this and since you have been so kind to me, I think I can be the one to say it this time - don't apologize for sharing your down times. That's what we're all here for... AND we all understand! I know it doesn't depress me more to hear someone elses struggles. Actually, it gives me purpose to be able to support others that are as down as I am! I hear you about others not understanding. I am so sorry your family is putting unrealistic expectations on you, but remember... they are unrealistic. But just hearing it from others here helps you be more confidence in the reality. The reality is, this illness has flares - unpredictable flares and there's not a lot we can do. When you can't - you can't and even if your mother doesn't understand it, it's the truth. Linda, I will pray for you tonight. Don't know if you are a praying person, but I know I hate dreading nightime. My heart goes out to you and I hope you have a better night tonight. Sending love and support... and once again I say, please don't apologize for needing us. You have been a very kind and supportive person and it is a pleasure to listen to your troubles and encourage you back! ~Roselover

Persephone, English Lit and Medieval Lit... Way Cool!!! And in Scoltland... Ahhhhh my dream!!! I'm teaching a 15 year old at home and next year she will be taking a British Lit class. She'll be begining with Medieval Lit and moving up through the periods - poetry, short stories and Novels. I think I'll have to come to you for help!!! Maybe I can just email you her papers and you could grade them for me - hee hee - just kidding. I think you'll have your hands full at Oxford. Oh how I would love to spend hours in that library! Well, party well, but be careful too! Love Roselover

Linda, You sound so much like me! I hate the words "You probably over-did", but it's usually true. I too have so many disappointments. Sometimes the good days are hard to enjoy because I fear the let down when I drop again. I'm starting to change my expectations though. I think this is a challenge for all of us - grieving the losses, changing our expectations from "healing" to learning to do things in a different way. I've learned to do things differently, now I need to learn to enjoy it! Sounds like others have experiences with this in lowering SSRI's so that might be some of the answer too. I'm crying with you... and sending you love and support. Hang in there girl! Love Roselover

Ernie, I am so glad for you. It will be really nice for you to be able to get around a little more. I had a dream last night that my husband took my to mall and surprised me by buying this wheelchair/scooter thing. It could be pushed like a wheelchair when I wasn't up to driving it and it was very lightweight so my 12 year old son could fold it up and put it in the car. I know... only in my dreams Let us know when you get your first chance to get out in it. I look forward to it for you! Love Roselover

C O N "G R A D" U L A T I O N S !!!! HIP- HIP- HURRAY! Love, Roselover

Hi everyone, I keep reading about the Dinet bracelets. Dinet has been mine and my husbands lifeline to understanding my new life with Dysautonomia. Is there going to be any opportunities for us "Newbies" to get braclets? I'd love to have one!!! ~Roselover

I am a pastor's wife in a large church so I have MANY people ask "Now what is it you have?". Most people confuse the "autonomic system" with "autoimmune" and begin to tell me how to boost my immune system. I too get a lot of the "Well, you don't look sick at all!" and often on the days I feel the worst. I think it is the only thing they can think of saying. Here's how my husband described my illness recently... I thought it was really good. "POTS is a syndrome which means there can be many different causes for a set of symptoms. The basic problem is in the autonomic system as it regulates blood pressure and blood volume. This leaves her with very low blood pressure, dizziness and fatigue, especially when standing along with a variety of other symptoms. The kindest thing you can do for her if you are talking to her is make her sit down." The thing I find that most people just don't understand is how difficult it is to stand. I will have someone stop me at church and ask me about my illness or how I am doing. As I stand there, trying not to fall down, leaning on a cane, they will proceed to talk and talk. It just shows me how much they don't understand. Like Jenn, sometimes I just answer that it's too hard to explain. Other times I go into detail of my symptoms, but usually, I just say I have very low blood pressure which is affecting my whole system. Not a complete explanation, but usually enough for most people. ~Roselover

Hi kconnections, Welcome. I'm fairly new to POTs as well (I've been diagnosed a year) and have been reading and posting here for a couple of months. You will find very friendly, helpful and knowledgeable people and it's been very encouraging for me to hear that I"m not alone. I hope you find the same. Roselover

Wow, thanks Meghan, I don't know how I missed all of these. I thougth I had done a search, but I must have done it wrong. Thank you! Roselover

Lisa, It's actually helpful to me to hear that you are in the hole even while on Florinef. I feel like such a failure to be on florinef and be getting worse. I just don't understand it. Thanks for sharing. Mom4cem, I admire you for making it to your two hours of work. I hope you can find some joy today and I'm sorry you have to drag yourself out today. It seems to me this illness is unpredictable, which I hate. I like to plan and I can't because I never know how I am going to feel. I do hope I can come out of this latest dip sometime soon. ~Roselover

I was on a forum for FM/CFS for awhile. They had some great catagories that made it easier to read and post. You can look at that site at forum However, the last time I looked at it I thought they had way too many catagories and it was a bit daunting! I suppose it depends on how many people are posting at one time. Roselover

Well, Persephone, you haven't gotten much response yet, so I thought I'd bring this back up to the top. I drink enough tea to live in the UK - grow english roses - dream of visiting the UK again but... I live in the US. Sorry I can't make the trip to meet you. I haven't even been able to meet Briarose yet and she only lives a few miles away! Roselover

I was told by a doc that I couldn't have low blood volume since my BP could get up to 120. (A general doc unfamiliar with Dysaytonomias) Any comments? Roselover

Oh Morgan, my eyes filled with tears as I read your story. I am so sorry. I can't change anything for you, but I can cry with you, and I am. You are loved very much here - I'm new, but that is obvious to me. Praying for you in the coming days. Roselover

I was told last week by an Endo that if my problem had anything to do with the adrenal glands, that Florinef would have helped it. He tied this in with aldosterone. I didn't totally understand and he really doesn't understand POTS or dysautonomia, but I wondered if anyone could give me more information on this. This information doesn't seem to line up with all the things I read, but so many of you have been working longer at understanding this. Thank you for input - in advance. Roselover

Well, Corina and everyone, With Corina's motivation, I made it to the Garden Center yesterday too. Though it's overcast with a threat of rain, it was so fun! I picked out some beautiful impatients, pansies, violas and dark purple helliptrope. No, I didn't get them planted, but at least they are here when I am ready. Thank you Corina! Hope you made it to the festivities today. I'm curious - why orange? It'd be fun to see a satellite picture of that! Also, being a rose lover myself, I'm curious what the rose is that you mentioned is your favorite - a yellow orange rose? I love the apricot colored ones and I love to grow Old Garden Roses - their fragrance is fantastic. I also have a lot of the new English style roses. Have a good and happy day all! Roselover

Dayna, I was surprised to see your post, because I was just going to post the same question! Last night, even with my glasses on I couldn't read. everything was blurry. It was kinda scary. Then my eyes started watering - I've never had this before. I think I was trying so hard to see that I was straining them. It's better this morning, but it's interesting to hear others have this problem. Roselover

Wow Linda! What a response!!! I am so glad for you and that you are wiling to put in so much energy into helping those who come after you! HURRAY! ~Roselover

Hi Corina, I just had to add this.... I think you are a fairy Godmother! After I read your post, I got up and finally got moving - got dressed and asked my husband if he'd take me to a garden center today. Then I looked out the window and you know what I saw? A PINK ROSE!!!! Yes!!! A Pink rose - the first one to open on my rose bushes. I'm sure it's the one you sent me! And maybe, just maybe, my head is begining to peek out of the hole today. I hope I don't do too much and fall back in, but I want to thank you for your great encouragement today!!! ~Roselover

Thank you Corina, You started my morning of nicely too! You are my kind of girl! You've motivated me to get out and hit the garden center this weekend too! Thank you - I needed some motivation this morning. I caught my pink rose down here in the hole and the smell is lifting me up. Thank you! Getting out in the garden or buying a new flower defineately picks me up. The other thing that I really enjoy is watercolor painting - outdoor scenes and flowers! It's almost as good as getting out and with watecolors. there isn't a lot of clean-up. Oh - and one other thing... a good Jane Austen movie!!! ~Roselover

I have two pairs of 40's I got through insurance with a prescription. They help a little bit, but I have never had any swelling in my feet or legs. I wear them when I am going to be up and around or have to stand much. I find them hard to put on and I am worn out once they are one. I also have Fibromyalgia and sometimes I hurt too much to put them on. One thing I don't like... having to go potty!!! With how much I drink, I go a lot and once they are on, find it hard to pull them down far enough to go and then hard to get them back up. BUT... they are defineately worth a try because they are non invasive and non medical and if they help it's just one more option you can rely on! ~Roselover

I had a Neurologist offer Provogil for fatigue. I was curious if anyone has tried it? It's a little new, but I haven't seen it listed for Dysautonomia anywhere and no past posts on it. Just curious. Roselover