Jump to content

I Am New And I Feel Alone


Recommended Posts

:(I am totaly new to this. I was diagnosed with POTS about mid December of last year. My husband had deployed the 30th of November. I am all new to this and I have been reading up on it as much as possible... Before I moved to Ft.Hood I was supposed to be seeing Dr. Levine, however with my husband being stationed down here I thought it would be best to go ahead and move. One night my POTS got really bad... I couldn't walk from one room to the other without feeling faint and sever pain from the palpitations. I went to the ER down here and they new nothing of POTS... Going based on my word alone without any research into it they prescribed the beta blocker Matoperlal and sent me on my way, no tests or anything... they didn't even ask me for a copy of my medical records nor would they listen to me when I told them that the Toperlal XL wasn't working so why would a genaric brand that isn't extended release work? Needless to say all it did was bring down my bp and brought it down dramaticaly... So I stoped taking it and started just adding lots of salt to everything, drinking tons of water, and wearing the support stalkings. Well when I was in and out of the hospital it was difficult to get a hold of my husband because of where he was located in Iraq. Now I get to talk to him all the time over the internet and just the otherday he asked me what the big deal is with it, he doesn't understand why it hurts so much and so on and so forth. I gave him the address to POTS place and said look it up. Now he wants to change his MOS so he can be home more often becuase now he feels sorry for me. Where yes I would like his support and I like the idea of him being home more often I don't want him to "feel sorry" about it... It isn't his fault and I don't need pity. I hate that I have this, I kept asking myself and God why... I mean I am not trying to offend anyone but I AM YOUNG... I shouldn't feel like an out of shap 40 year old climing 3 flights of stairs when I walk in the mall. I want to be able to run with my son and do things that any body would want to do with there kids. I am afraid of what is to come. Me and my husband want to have another baby, but I have read conflicting articles on women with POTS and getting pregnant. I am confused and really aside from my mother who is a nurse, feel like I have no one to turn to... My husband god bless his soul wants to understand but I get so frustrated explaining things over and over again, and feel like I am being babied. I am a very independent woman who feels like she was knocked down to the ground and I want to get up by myself but now I require help ..... I hate that! Does anybody know how I feel? Can any one talk to me? I hate that i feel alone in this!
Link to comment
Share on other sites

Dear Tears, YES we know how you feel! You have come to the right place. I think you will find alot of help in understanding and treating this illness, as well as support from alot of people just like yourself.

I'm sorry you're going through this, especially with your husband gone, but I'm glad you found this site- it has been a tremendous help to me, and I hope you find the same support. - Ellen

Link to comment
Share on other sites

Bless your heart!

It's hard for doctors to understand this, let alone family members. I think it's hard for the people (particularly husbands) who love us to understand that there's no 'why,' and there's no way to 'get better' and life is going to be unpredictable. They want to fix it and can't.

Anyways, this is a good place- just even to 'surf' the posts can help you realize you're not alone. Welcome!

Link to comment
Share on other sites

Dear Tears,

I have great admiration for you going through this by yourself. I know that when I got really sick my husband cut back on his hours at work and also quit teaching part time at our local vocational school. At first I felt very guilty and felt like I was the cause of him giving up a lot of his life also. He explained to me that myself and the kids were his first priorty and everything else came after that. He told me that the only reason he taught in the first place was to pay for our yearly vacation and that a vacation wouldn't be any fun if I couldn't go with him anyway.

Just hang in there. I don't post much on the forum, but I have learned so much and have gotten so much support just by reading others posts and knowing that there are others out there who feel the same way.

Good luck to you,

Kim

Link to comment
Share on other sites

Dear Tears,

We are here to support you and completely understand how your feel. I get so frustrated having to ask for help in so many areas of my life -- grocery shopping, house cleaning, day care, etc. I so miss being able to take care of all that myself. Other let downs, like the past weekend I was unable to go to a wedding and my husband wasn't willing to go by himself - so it made me feel like I was holding him back on an enjoyable evening - and then the next afternoon we had a graduation party that I was able to tolerate for about an hour and then had to leave, which I was too weak to drive myself so he had to leave with me and it just totally sucked having that happen - but yet I was thankful to at least have been up to getting there for that short time, it's such a double egded sword at times!

I keep trying to just be thankful to have people in my life that help me out and hope that maybe in someway they feel good being able to help out, but it's hard to keep a positive attitude many times.

Just remember, your not alone in this and from what I've experienced, for the most part, friends and family don't mind helping out when I state my need in as positive way as possible, ie. complimenting them on how good they are at finding great prices on clothes and that if they run in to any great buys on cute girls 2t clothes it would be so helpful, or stating how much fun my daughter has with them and if it be okay to watch her for a while as I need to rest, etc. Just a few "coping" ideas that may be helpful.

- Tammy

Link to comment
Share on other sites

Welcome, and no that you are not alone. Here at this forum, I have found a 2nd family. I can express my feelings and others relate to me. I now its hard comingto trems with the "new life" my biggest problem I face it asking for help. Even when I am in my wheelchair I was fighting to open this door the other day, all I needed to do is ask for help ans yet it was like I had to prove it to myself that I could do it to feel normal, I am fighting learning hope to cope with this new life, but I am thankful still for each day, I think now with my mim having cancer I see how lucky we are, see we live in pain, and many of us can't work we still have a long life ahead out us. I try to tell myself when I am down to think still how lucky I am.

I wish you the best and agin WELCOME! :(

Link to comment
Share on other sites

Welcome! It sounds like your hubby is really starting to understand and that helps!...

I feel guilty at how much my husband does when I can't. He does not complain and I feel bad when we have to leave early from somewhere because the tachy sets in or we don't even go because I feel sick.

Anytime, someone is here. :(

Link to comment
Share on other sites

welcome-

I hope you find some comfort here. I am sure that it is quite difficult for you, with your husband being deployed overseas. You have a lot of additional stress in your life right now and I am sure you husband is as worried about you, as you are for him. I can imagine it is difficult to completely understand what each is going through when you are so far apart.

Call in your troops, so to speak - friends, familly, other military wives, social service rep. from military?, whatever it takes to help when you need it. Many of us were strong women before this illness and that strength it was heps get us through the battle everyday.

That being said, everyone needs help at dift. points in one's life, for you it is now.

Hang in there!!! :(

Link to comment
Share on other sites

Guest dionna

first of all welcome to the forum. we have all been down the same road as you are traveling on now.

i was 18 and on active duty in the marine corps when i got POTS so i understand the military life with POTS.

i also understand your husband wanting to change his MOS to be with you more and i understand how hard it must be on you being in a new place not knowing very many people and having your husband fighting in iraq. that is stressful- i know- and it doesn't help your symptoms any either.

medical advice:

i know that there are some doctors at the National Naval Medical Center Bethesda, MD that know about POTS because they are treating me and there are also doctors at Walter Reed Army Medical Center who are treating POTS patients. perhaps you could be sent to either one (depending on your husband's branch).

good luck to you on getting treatment and know that you aren't alone with your condition.

dionna :(

Link to comment
Share on other sites

I never thought coming here I would have so many people who understood.. I thank you all for your kind replys. I really feel more comfurtable talking.. Thank you for the medical advice and the way you all made me feel... I don't feel so alone anymore... thank you all so very much!

Link to comment
Share on other sites

Hello tearsinmysoul....................when I read you post I could relate to so much of what you said about yourself, and I'm sure that a lot of others on the site will feel the same .

Trying to get a doctor to believe that there is something very wrong is hard , but harder still is trying to get your partner ( hubby) and family to realise that it is a real condition you are suffering from , and yes , you do need help and support , along with someone who will listen to you when you are down, hold you when you feel your heart will brake and comfort you when the pain is so bad you feel you cant go on...........without trying to smoother you, take over your life or treat you like a child.

As time goes on you will get used to how your body behaves with pots, sometimes it will surprise you by coming up with a ' new problem' sometimes you may think 'hey, this is a good day' .

On the bad days we are here to help you by relating how we have coped in the same situations, give you support and making you feel ( I hope ) that its not just you, you are not alone anymore, on days when you feel good , and there will be good days ahead , we will celebrate this day to, if you share it with us .

I have had Autonomic problems for years, many of those years I struggled without medical help or medication. You are one of the lucky ones who has been diagnosed and is getting help , you may not think yourself lucky at this time , because the condition is over whelming you , but given time you will know your limitations.

Life is what you make it, I have never let my conditions take over, they are just living with me , like an unwanted visitor who refuses to leave because my house is so warm, happy and inviting................... :) thinking of you ............................Willows.

Link to comment
Share on other sites

wow. I know it must be hard for you with your husband deployed. I was active duty military and found that I could get a referral to a Dysautonomia specialist when I had this illness in the military since there are no Dysautonomia specialist in the military. There are doctors that were familiar with the illness, but you need someone with more knowledge than that. You really need to see a specialist instead of wasting your time with doctors that think they know what you are talking about, but unfortunately most of them do not and this can be a more harmful experience than a good one. It is a battle to get this specialist and can be very political, so if and when you see your doctor go in prepared. Find out the closest specialist to you and call them ahead of time to make sure they take tricare prime, or whatever insurance you have. Give them all the information at your appointment and be very clear as to what you want. I had to take this battle to the top (the medical commander - at our base anyone who has a problem with their medical care can make an appointment with him or her) because I was not being heard and you need to do that as well or your husband does, because your health is never something that should be compromised and the reason they will tell you no or push you aside is because it is more work on their part. Doctors in the military are sadly undermanned because of the war so I can understand why they do not want to put in the work, but you have to take care of yourself first, because you can't afford not too.

I wish you luck

Link to comment
Share on other sites

I realized that I was going off the assumption you were tricare prime in the military, but if you are tricare standard I would highly recommend seeing a Dysautonomia doctor. The best part of tricare standard is if you do not like a doctor it is so easy to see somebody else. A luxury that is not as available to us being tricare prime.

If you are tricare prime, you have two options if you want to see a specialist

1. The route I explained in the last e-mail if you want to see a Dysautonomia specialist through a referral

2. Or you can change to tricare standard with a small price.

I did both routes because I did not want to wait until I had the option to go tricare standard. I wanted the help with medications and answers right away and not from someone who is just shooting from the hip. I wanted someone that knows what they are talking about.

I honestly thought I could do all the research and find out all I needed to know about this illness on my own, because I'm also very independent, but when I did see a specialist I realized what all I was missing and how much more they could help me out with IV's whenever I needed them, calling the ER to explain to them what I needed, giving me very helpful advise about pregnancy, etc. Anwyay I hope some of it might be useful.

Good luck

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...