Retraction

[ArmyNPots]

Good Evening All,

I have not wrote in quite some time and one of the last times I wrote, I wrote about how my mother was not supportive of me and did not believe my POTS. Well, as I have had time to dwell on that topic, I have come to the conclusion that I was wrong.

My mother was the key figure in trying to find out what was wrong with me and she was always supportive of my condition.

I wrote that she wasn't because I am a 22 year old mom, wife and member of the army with a horrible condition and I displaced my anxiety and anger onto the idea that somehow my mother wasn't supportive.

Does anyone else find that they do that? To just get so fed up with POTS that you turn to something fathomable to blame your anxiety on?

Well, I apologize for doing that and it was wrong.

Lately, I have been feeling worse and it terrifies me. I am literally on the bathroom floor begging to be able to stand and walk just to the bedroom to get to my son and this is happening more and more. My husband worrys so much about POTS, that I tell him everything is fine and I don't feel any sicker, but the truth is, I am lying.

Does anyone else feel that their POTS has progressed? At 22 years old, I can't afford for it to escalate and it terrifies me that it just might be doing that.

I wrote this post tonight because I pride myself on being an honest person and as I realized how helpful my mother has been to me, I felt that it was wrong for me to have written differently.

I hope everyone is having a blessed night and that no one is having a "Potsy" moment.

Thank You and God Bless.

[futurehope]

Sweetie,

Are you on any medication at all? If not, it is time for you and your doctor (if you have one) to get more aggressive with treatment.

Please get better soon. And it's difficult to tell in any particular case whether you will get better, worse or stay the same. Also, you may have "potsy flares" that come and go.

All my best.

[jenwclark]

Does anyone else find that they do that? To just get so fed up with POTS that you turn to something fathomable to blame your anxiety on?

I think EVERYBODY does that sometimes, even if they don't have POTS, and parents are the most logical target. It takes a lot of people much longer than you to realize they've put the blame in the wrong place.

I'm with futurehope on this. It sounds like it might be time for a new medicine or a new doctor. And I understand wanting to protect your husband, but he's there to support you, too. I think the people who love us want to know more than we think about what's really going on with us.

Take care, and good luck.

spike

[masumeh]

From my experience over the past 4 years, and from what I've been reading, POTS is NOT progressive. That might be the best/only really good news about it. Your symptoms could get worse or better, but it's not the kind of disorder that trails down a meandering path to the grave. No, it's a syndrome, a set of symptoms which, depending on the cause and that differs from case to case, do not get worse or better indefinately. It's just ups and downs for life, it seems. That's how I conceptualize it based on my past and what I've been reading. I could be wrong. But, it seems like we all go through these 'flare ups' and flare downs, depending on other things in our lives (i.e. stress, illness, extra job or home demands, medications, pregnancy, etc). The first two to three years I had this disease, I would get better, then regress, back and forth. The fourth year I seem mostly to have stablized, but that may be due in majority to developing stable coping strategies (like getting help with house work) and other factors. But I read somewhere that it takes about 4 years on medication to really recover to the person's potential functioning. I never took meds, and the same timing seemed to apply to me.

Hope you get some rest and have good days soon!!!

Masumeh

[BEE]

I have had it they think for about 2 years although I had acardiac ablation in about 2000-01 and for many years I was FINE ( no symtopms ) so I think that in form it is similar to have relapses of intensity and times where things are just bearable.

And times when you kind of forget(for some POTS sufferers not all).

I have found I have been angry and blamed others at times..keep your head up girl and if you are ffeling worse then think about maybe a med adjustement. Remember youa re your own advocate on this you kind of have to be.

Hang in there...Bee

[Sunfish]

i know for me "little things" can set me off emotionally when i'm having a rough time with the bigger things in life. it's not exactly what you're asking or referring to but it seems to be related. and those closest to us ( ) often bear the brunt of emotions that are really about other things.

POTS is not technically considered to be progressive. that isn't to say that the illness doesn't vary from person to person and - as others have said - get better, worse, or stay about the same over the years. the most prevalant trend seems to be people having ups & downs over time. some of the other ANS diagnoses are considered progressive but are much more unusual, particularly in someone your age.

there are many options for treatment - medications & otherwise - so i truly hope you can find a doctor that is willing to help you in that regard. i know that's often easier said than done.

and again, while i'm certain that your intentions are nothing but the best, you may be making it harder (physically and otherwise) on yourself, your husband, and your little one by trying to pretend things are better than they are. i hope that you're able to have a heart to heart with your husband so that you can have the best support system possible.

hang in there,

melissa

[juliegee]

As the Mom of a of child with an autonomic dysfunction, I know how hard your Mom must have fought for you. And then after getting a diagnosis, she struggled with letting you be normal and "overdoing" for you. It's impossible to always get it right. No one truly understands what it's like to walk in your shoes. Regardless, you are a sweet daughter and incredibly noble to print this retraction. Your Mom would be proud of you. And, so am I!

As far as things getting worse, you need to look at your treatment program. (I hope you are on one.) My son's has to be frequently tweaked depending on the symptoms du jour. Best of luck to you.

Hugs-

Julie

[masumeh]

Just a quick thought here... did your mom resist the POTS diagnosis after learning about the prognosis (i.e., no real "cure", probably not about to vanish away)?

My husband and mother, two of the most supportive people in my life, both had similar withdrawl type reactions when I told them about how well POTS fits my symptoms. My husband was skeptical from the start, but completely closed the door when he heard that there wasn't any easy "cure" or magic pill. He still "doesn't want to encourage my reading about 'that disease'". He wants to believe that I can be normal one day. My mother was also half-accepting about it until the --what does this mean, is there a cure? no-- part. Then she was just silent. I've been through a lot of "hey maybe this is what I have"s....so I shared their initial skeptisism...but it's paradoxical to me that my husband, my extremely supportive husband who went through doctor visit after doctor visit after scan after blood test after ER visit after (back to the beginnign and through the cycle about 15 times) just couldn't accept the final diagnosis. It's shere denial. It shows how difficult it is on him to think about the possibility that I might have this condition for life. It will take time for him to come around, I believe.

Maybe your mother (I did not read the initial post which you were trying to retract) had a similar kind of denial? Did she come around to acceptance?

[Miriam Poorman-Knox]

When I was diagnosed the doc asked about my pregnancies. She said that after delivery is often the most difficult. I agree that you should see about meds that might help, potato chips were mine. Also (don't jump down my throat) you just had a baby are in the armmmmmy and have pots. Thats overwhelming. I would find someone to talk to about it. Blessing Miriam

[masumeh]

When I was diagnosed the doc asked about my pregnancies. She said that after delivery is often the most difficult. I agree that you should see about meds that might help, potato chips were mine. Also (don't jump down my throat) you just had a baby are in the armmmmmy and have pots. Thats overwhelming. I would find someone to talk to about it. Blessing Miriam

Sorry, this is so off topic... but, aw, my daughter's name is miriam too...only we spell it maryam