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Falling apart


calypso

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Well, I finally had a visit with my doctor about my swelling and weight loss. What a waste of time. (If I had a nickel for every time one of us said that, I'd be rich, right?!)

He told me I have "chronic venous insufficiency" -- even though this is a condition that usually develops in women who have several children, are older, overweight and who have varicose veins. I am 28, super-thin right now due to too much adrenaline I think and have not one varicose vein in my body. My mother, who is 67 and has tons of varicose veins, has less swelling than I do.

I am wearing compression hose and they help with the swelling, but they are awfully uncomfortable. And this only masks the problem as opposed to finding the cause.

Then, when I told him that I have not weighed this little since elementary school, he told me to drink milk shakes. Is that wise advice for someone with borderline high blood pressure and a father who died of heart disease? This guy is supposed to be a great doctor here and is well respected in the community.

I am so frustrated. I never had health problems before I had my daughter, aside from occasional panic attacks completely controlled by medication. Now I am totally pale, everyone at work is gossiping that I am sick with some horrible disease, my heart is pounding away at even the slightest emotional distress/excitement or exercise, and I can't breathe at all.

And my anxiety is at an all-time high; I had to have my black Lab euthanized the other day because he developed a giant mass on his spleen that burst and was bleeding. He had less than a 10-percent chance of surviving much past surgery because the vet said she believed he had malignant cancer. The euthanizing part was so emotionally upsetting that I had horrible chest pain referring to my shoulder and my heart was pounding for hours. I can't believe what happens to my body from any sort of stress.

Yikes. I am trying to stay calm, but I feel like I have such little control over my body. I know, I'm whiny!

Amy

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Dear Amy,

Fire your doctor and try again!

No one should have to go thru that. "great doctor" and "well respected" mean very little to me. I have seen several docs that fit that same discription and fired all but 2. I lost them when I moved to another town. They are now 75 miles away. I'm reconsidering seeing them again just to get the help I need.

As to weight gain, see a nutritionist. They can give you the best help of anyone. As many people have said here, try, try again. You may have to experiment alot to find the foods you can eat, that will stay down and that you can absorb the most from. I am still in that process now. ;)

Did you/do you take anything for the anxiety? I used to take Paxil, but don't now, wish I could.

I am so sorry about your dog :o !!! I can totally relate, we just had to get rid of my cat, she was my best friend, I've had her for several years. Over the last few months I have developed an allergy to her. She was long haired, but I seem to be ok with the short hair we have(whatever).

And one last thing, never worry about being whiny!! We understand and all have had those days/week/months that never seem to end and we rant and rave too.

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Amy,

don't worry to be whiny, I think we all are now and then. And you have reason enough to be. I agree with blackwolf in firing this doctor. You have to try and find a doctor you're comfortable with and who takes good care of you. I know that's easier sad than done but you need a doctor who understands the things you're going through. I'm very sorry to hear about your dog. We used to have a dog who turned out to have diabetes. After two years we had to have euthanized her, it's sooo sad to let this happen. Wish you the best,

Corina

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Amy,

I am sorry that you are feeling down right now. Nothing can set off those feelings more than an ignorant doctor!! I would definitely be seen by someone else (what does your POTS specialist say about this? can he/she recommend someone?).

I go completely by word of mouth these days- either from fellow POTsies, or doctors that I trust. If I can't do that, I pretty much don't see the doctor- that's how fed up I became at the very beginning of this illness. For example- I wanted to establish with a primary doctor when I moved to FL, and I got a recommendation from the Florida Dysautonomia Support Group. I called the doc and unfortunately he isn't accepting new patients...so my thoughts were- I'll just wait until he is!!! And that's what I'm doing.

I am also sad to hear about your dog ;) My puppy lives with my parents (when I left home, he didn't get to come!) and I still look forward to seeing him, don't know what I'd do if he wasn't there.

I hope you can get answers soon!!

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I agree with what has been said. You should find a doctor who is willing to care for you properly.

I am sorry for the lost of your dog. I had to have mine euthanized and I still remember her even after buying another one. It's like our kids in a way.

Ernie

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So sorry about the hurdles you've had in the past few weeks. I have to agree with the others here; tough as it might be, a new doctor might be in order.

Big hug, Nina

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I'm sorry about the loss of your dog. I just went through that myself, this year.

I'm in the middle of weight loss myself, and my family tends to have coronary artery disease and high blood pressure, and diabetes so I'll tell you what I'm doing. I also do not drink milkshakes with sugar in them. I've been getting the Atkins shake, both the liquid form and the powder form. The powder you can mix with water or milk. My gastro guy is recommending the regular (full fat) milk to drink. This does seem hard on my stomach, though. There are also shakes with the brandname of "Choice" (I think this is sugar free) and Boost Plus (high calorie) or Boost protein both of which have sugar. I will be trying the Atkins for now. If I keep dropping weight, I guess I'll need to see a nutritionist. I wonder if it is covered by insurance?

Also, in the meantime, I've seen my gastro guy and I have an appointment with the endocrinologist to rule out causes of the weight loss. I try to put food in my mouth as often as I can remember to. This includes whole grain cereal with milk and fruit or luncheon meat (turkey) on bread. I don't do well with fats.

BTW, my gastroenterologist recommended Creon 20, enzymes, for digestion. He also recommended them for my mother. We both notice less churning in our stomachs after using them with meals. Also, you may need the lactose-intolerance milk if you mix milk into your shakes (if you tend to get bloating and problems from milk products).

Anyone else on prescription enzymes, BTW? I'm kind of curious about this as this is my third gastro guy, and he is the first one to recommend enzymes.

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I'm so sorry about your pup, Amy. Mine's getting on in years as well - don't know how I'll be able to stand it when she's gone. I read your post and I'm just so frustrated for you. I really hope things start looking up soon.

BTW, I'm with the others. Get rid of that doctor.

On a tangent here: Wouldn't it be great to have patient advocates for POTS/Dysautonomia people?

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OUr bodies seem to be able to take on no stress, especially when in an hyperadrenergic state. It is like shaking a can of soda, you need to let some steam out in order for it to calm done. When I am anxious< I feel as I am going to burst. It is so hard on our bodies and it feels awful. Whatever you want to call it whining or venting it needs to be done. We need it much more than normal people. So whine, vent or even scream...this is a safe place to do it. we want to hear about it!

I am so sorry to hear about your dog. A loss of a pet is a very difficult thing. I lost my two and a half year old Bishon two years ago. My husband took him jogging and the dog had heat stroke. I had always warned him about this and that Biscons can not take temperature changes...I did not like him running the dog. I was so attached to this dog the agony of his death felt unbearble...so I understand how you are feeling.

Hoping for better days!

Take care,

dawnanich

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When i first got sick i dropped so much weight that i looked like a ghost and i was so fatrigued that i couldnt keep my eye lids open half the time - it was terrible.

I ahev improved sincve those days and ive managed to put a bit of weiught on just by eating lots of rice and carbs.

I even tried to get back into exercising and sometimes it has helped.

The anxious feeling is a nightmare - i can never quite work out whether its the anxious feeling (impending doom and confusion) or the dizziness that i hate the most...

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Hang in there, Amy. There is nothing so upsetting like the loss of a beloved pet. They give us so much unconditional love and companionship. Their loss is an ache that runs deep. However, an old sailor I know says "Dogs are like women. The only cure for getting over a woman is to get another one...and the quickest way to get over a dog is to get another one." Perhaps in a couple of weeks a visit to the local rescue shelter would be in order.

Oh, and fire your doc. Just because he's well respected in the community where you live doesn't mean he knows diddly about dysautonomia. He stacks up Jack in the POTS community.

Better days are coming. Vent, whine and then wine. Maybe not in that order!

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Venting is one of the best things. When Nicole is going through a tough, tough time as she has been lately she sometimes feels the need to vent and afterward there is a different energy in her face- in her eyes. She always feels better. Lighter. This is a great place to let it all out- there are so many caring people here. You have been through a lot.

I don't own a pet but some of our good friends do and we have seen the grief and mourning they have gone through when they have had to put their pet to sleep. I have seen how can be devastating for them. They say that there is a big void. So cry, if you feel like it - as I have seen my friends do when they have lost a dear pet.

And about that doctor. Sometimes it's hard to fathom how some doctors get the reputation for being so great. It sounds like you need to trust your own experience with him - and find someone else even it is no easy chore.

Take care,

Beverly

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Guest Julia59

I'm so sorry about your doggy-----and all other problems you are having with your health.

It's so hard to go to work that way----UGG---it must be so hard. Hang in there, things will get better. I know it's easy to say----but as time passes you will heal.

I am praying that things will get better for you soon. :)

Take care of yourself,

Julie :0)

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I just got back from visiting a friend overnight and saw all of your responses. I immediately started to cry -- good cry, that is -- because you are all so caring and supportive. I don't know what I would do without you!

I am feeling better emotionally about Charlie, our Lab. We do have another dog, and that helps -- though she is obviously depressed as well. In time we will all heal. My husband has it the worst; this was his first dog and he took it pretty hard. I don't think he realized how attached he was. He has had to deal with seeing me so ill too, and that has been rough on him.

Thanks again, guys -- I am motivated to wake up tomorrow with a better attitude because of you all!

Amy

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Amy, I too just wanted to post to extend my condolances to you and your husband--and your other doggy too, as you all have suffered a loss. I'm an animal person--always have been--and I know what it means to have loved and lost a good (animal) friend. Nothin' like em in the world. I'm glad you have another dog right now to lessen the sting...but nothing heals like time and the compassion of good friends and family.

Take good care; and I hope you're feeling better soon!

Merrill

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Amy,

I'm so sorry about your dog. Losing a pet is really hard. I lost my dog in May and I still think about him everyday. Although having another dog around is really helpful.

I'm also sorry about your Dr. It's so frustrating to have a Dr who isn't lsitening to what you are saying and who doesn't get it. I hope you can find another Dr if you need to although I know that's easier said than done.

Take care,

GayleP

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Amy,

I am crying too! Reading what people wrote to you and reading what people wrote on my other post!

So, I am pooped...but I just had to say....

1. I am soooo sorry about your dog. I had a big crash POTS wise after it all with my dog. It is so emotional...our pets are our lovebugs. We put one of our dogs down last December...almost a year ago...and I STILL get teary-eyed thinking about her spirit and miss her so much. She loved the fall, the leaves, the crisp air! Our other dog, the wild child, doesn't seem to notice these things! That is what is so amazing...each dog is its very own personality and unique spirit...so, let yourself grieve and miss you dog! So many of us are pet-crazy here, so we feel your sadness! I'm Jewish, which leaves the heaven thing out, so I hang on to my favorite memories of her and smile through my tears...making her memory a blessing.

2. Ugh! Drink milkshakes, my foot. What a dumb prescription. I second what everyone else says...time for someone else. But that is so hard...b/c it feels like setting yourself up over and over again, you know!? Also, just wanted to make sure you have been tested for celiac disease? (the weight loss thing makes me think of 3 people who had the same thing happen).

Please keep us posted...and I am glad the posts lifted you up...they always do me too. I think you have a beautiful spirit...hold on to that when the drs. give you a hard time!

Later alligator!

Emily

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p.s. amy, i also wanted to say...that i have very similar responses to stress with the heart pounding like crazy, chest pain, agitation, etc....the same response to positive or negative stress. and putting my dog down really did it to me also. like you, even something like you described in terms of seeing kerry can set me off...not saying that as a political statement, but wanted you to know that i have similar reactions to situations as you...it becomes very difficult to separate out the anxiety and POTS symptoms b/c they play off of each other so much....ugh!!!

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