The Dinet Site

[DESPERATE DEB]

Have you ever felt like this site is like a naughty secret?

When I found this site last week, after so long without any answers or help from my doctor, it was like I wasn't alone any more and most importantly, confirmation that I hadn't gone mad. Reading other people's stories was great for me and some kind replies to my posts really helps me a lot.

However, yesterday, in a well meaning chat with my mum, she said that I mustn't keep thinking that I have dysautonomia and shouldn't really read into it. I may be being paranoid but it was as though I had found a catalogue of things I couldn't really afford and kept looking at things that I shouldn't! As if I was trying to find things wrong! I am looking because I am trying to find some answers to the **** I have been going through! I found it rather hurtful and felt so angry. If you've seen my other post I have been treated quite badly by my GP because he doesn't know what is wrong with me. Maybe I'm just feeling low at the moment but I felt like I was having another conversation with my GP. Has anybody ever experienced this? People just not understanding why you want to look into what is wrong with you. My mum isn't well herself and the last thing I want is to be angry with her. She just doesn't understand and why should she? Now I feel like I don't want to talk about what is wrong with me in case I'm accused of reading too much into things!

This is a great site and I'm sure it is a big help for lots of people. Loads of information and like getting a new friend!

[StacyRN]

I know what you mean! But regarding our health, ignorance is NOT bliss... ignorance is dangerous, and knowledge is power. Remember, you have LOTS of friends who understand what you're going through on this forum... we believe in you!

Stacy RN

[DESPERATE DEB]

I know what you mean! But regarding our health, ignorance is NOT bliss... ignorance is dangerous, and knowledge is power. Remember, you have LOTS of friends who understand what you're going through on this forum... we believe in you!

Stacy RN

Thanks Stacey. Like I have said, this is a great site with lots of info and help from other members. I think the best thing for me is not to speak to people who don't understand. It doesn't help me or them. I'll just stick to my friends on here

[lieze]

I have had the same experience from my parents and my husband. They have made negative comments about the time or effort I have spent on the internet trying to find out what was wrong with me. They have also just tried to put it off as me being crazy. Well I think they were kind enough to not use that word. But I felt very much that my adrenals were involved and I was feelings so worried that I needed medical help fast or it could be too late. Thank goodness I think I was just at the peak of my illness at that point. But no one could understand they accused me of being anorexic and stood and yelled at my bed that I would die if I didn't eat. So much confusion and misunderstanding and I was scared out of my mind.

My blood pressure monitor was my best friend. And my husband threw it one day and threatened to just get rid of it. I guess we could look at it as just pure frustration at the condition in general. No one thinks they will get sick this way. I didn't even know anything about POTS before this.

lieze

[Jan]

When I first got sick I found another site like this one, and it probably saved my life.

I swear I would have gone crazy if I hadn't found other people who understood what I was going through.

A person does have to be careful on sites like these to not think that everything others post applies to them.

For example, at first I would see that people sometimes posted food that make them sick so I started eliminating those foods until I had nothing left to eat. I often felt sick after eating so I would assume it was something I ate. That wasn't the case at all. I just have to eat smaller meals.

You also have to be careful not to to chalk every symptom up to POTS or dysautonomia. Sometimes we really do get ear infections, or heart problems, or things that CAN be treated and not just accepted or dismissed because it is common for people here.

So WELCOME to a group no one really wants to be a part of.

[StacyRN]

Lieze,

That is just AWFUL the way your parents and husband treated you!!! Oh, I get so mad when I hear things like that... they have NO IDEA how awful this can make you feel! I have been a respiratory therapist in a pediatric intensive care unit for 15 years, taking care of kids on life support, etc., and I just became an RN in June 2009. I got really sick in Sept. 2009, just 3 months after starting my new RN job, and I had to search the internet too, because no doctors would believe me! My friends and family (luckily!) believed there was something wrong, because I have been a hard worker and am definitely NOT a wimp! If I hadn't found the diagnosis myself, then had it confirmed by a specialist (probably helped that I had an extensive medical background) I never would have known what was wrong, never gotten help, who knows what would have happened to me, because I'm on disability right now cuz I can't work.

You tell your family that they'd better be kind to you, and get the DVD called "Changes" available on the dinet website, it helped my friends understand what I was going through. Do you have a good doctor who understands POTS?

I sure feel for you, and it's wonderful that we have this place to get encouragement from those people who DO understand!

All the best to you, and your husband had better quit throwing your bp machine... grrrrrrr!

StacyRN

[lieze]

Well it got really bad at my parents. I did not feel I was able to go back to work, but my mom stood with her hands on her hips and said I had to. So much went on during that time. I had left my home with my children and fled to my parents because we discovered mold. It really is too much to go into, but my husband took his time in getting the house fixed. My parents actually accused me of taking advantage of them. My heart was broken. I tried to remind them I was sick but it didn't do any good. I was still trying to work until my father basically called me an unfit parent and told me even if I did get my house fixed he wasn't letting me have my children. At that point I left my parents house. I went to my in laws and husband moved in with us there until we could move home. Since my parents were my childcare I chose at that point to just cut my hours back to every other weekend. I simply did not want to have to deal with them.

I don't feel like I'm sharing everything but getting overwhelmed here. It has been a nightmare.

I was so scared and no one seemed to care.

lieze

[StacyRN]

Lieze, my heart goes out to you...

I can sure understand how it's too much to go into, and probably too painful to hash over also... if you ever need anyone to talk to though, you can message me, or here is my email: sreedrrt@yahoo.com

I remember hearing about one woman with POTS who had it when she was a little girl, and her mother and father beat her and locked her in a shed many times because when she was doing chores she would faint sometimes, and they said she was faking it. How awful, when you are really physically ill, and no one understands. I don't know how you do it, working, and 4 young children...

I had 3 children I raised pretty much alone, and had to work, and DIDN'T have POTS at the time, and THAT was hard! My kids are grown up now, I'm 49, and wish I could get back to work, want to be an RN so much after all that schooling! Maybe this clonidine is an answer for me, it seems to be making me feel a whole lot better! I had a day today, a whole day, where I felt pretty NORMAL! And that isn't common

Anyway, if you need someone to "talk" to, PLEASE email me, I'll be thinking of you, and I will always have a word of encouragement for you...

Hugs,

Stacy

[StacyRN]

"So WELCOME to a group no one really wants to be a part of. "

I like this quote!

Stacy

[DESPERATE DEB]

"So WELCOME to a group no one really wants to be a part of. "

I like this quote!

Stacy

I love that quote too.

My parents are never horrid to me. They just don't understand. Like I have said before, my mum is ill herself and just at the time I want to be there for her, I feel like this and I am left feeling guilty for thinking of myself. She is terminally ill but actually well at the moment but I just want to get better so that I can support her like I should.

I was trying to say in my post that I feel like she was saying I was looking on here to find something wrong with me and not find OUT what was wrong with me! I don't think she really means it but doesn't know what to say anymore, like everyone else.

Thank God for this site and the kind people on here.

Take care.

Debx

[ladyt]

hi..

Whit out this site i wouldnt know what to do either.. I still feel very lonly whit this stuff, but I know I am not. .. I know many people are very sceptic to sites like this, say the makes things wors and people think to much about their illnes.. maby that is true for some people, like people strugling whit health anxytety etc..

For me It as made me sort of healthyer, I gett tips and advises.. I gett a better understanding of a crazy bodie. There are not any spesailist where i live. The docs are mostly ussless for me..

I am so greatfull for this site and internett.. It keeps me sain...

have a wounderfull day all of y...

[lieze]

Deb,

My mom has had diabetes since she was 21? So she has had a chronic disease that she has lived with. She is having a lot of difficulty with her blood sugars and twice while we were staying there she had hypoglycemia. Her behavior about her own disease is not normal. She continued to take her blood sugars obsessively and I think over medicate herself with insulin causing her blood sugars to go too low. It maybe unfair for me to say this I have not been involved with her diabetes management but both my dad and I felt since she was swinging so low she should really back off a bit on the insulin but she wouldn't.

She made a comment at the breakfast table the one morning to my Dad that I overheard that she thought I was just jealous of her, which made me just want to scream. I never addressed it.

One night that I went there to stay after I had left because I did finish out a month's work before I backed my hours down and my parents had agreed to watch the kids. My mom had went to bed and only about an hour after falling asleep my dad ran and woke me up. My mom was having a seizure. Her blood sugar was only 29. We gave her glucagon and called the squad. She refused to stay in the hospital. I called into work the next day because either way she shouldn't be watching kids. Her comments and behavior the next day were very strange. She said anybody that has been a diabetic as long as she has would welcome death. When her pastor called she told him she thought it would be okay if she died so she could be "first" I had no idea what she was talking about thinking she would be first. I guess this would be referred to as bargaining. But her pyschological state to me seemed to be in question.

I also thought it was a blessing and time that I cut back on my work hours as far as them having that responsibility went for childcare. It seemed she didn't need the stress even if it was something she enjoyed.

Her comments to me about my own health were not normal or rational to me. She made comments about my own mortality when I expressed fear because I really didn't know what was going on at the time. She told me well we're all going to die. Didn't blink an eye. It hurt me so badly as her own daughter that I felt I was close to death and she didn't seem to be able to show normal emotion for her own child. I thought it's just going to happen and then maybe she will believe me. I got pictures in my mind of her sitting there at my funeral just like a stone. Not even shedding a tear and offering to pay off one of my debts a ring I had bought for myself; turning around during the service and telling my husband we'll pay for her ring. It hurt me so bad and still does. Because of that awful vision I had. I took what money I did have in my bank account and paid off the ring to take that thought out of my mind. I couldn't bare it.

Once again I'm just shutting down and not able to continue this. I am so happy I am feeling better that is my only blessing. I feel like I have lost everything. I know that maybe I am not seeing the whole picture. I still have my life and the lives of my children, my parents, my husband. My life even though it was not perfect seems to be gone at the moment.

Now they are targeting me at work if you have seen my other post and gossiping about me with one of the topics being that I am crazy. I can hardly take it. I have been at my workplace for 18 years and it meant a lot to me. I have cut back my hours to only 24 a month and it seems that people aren't even satisfied with that. They want to take my dignity too.

How long do you fight before you just give up? I feel like I could just have a mental breakdown here and I have so much to be thankful for. Why is this happening now when I am showing signs of recovery. Why is life beating me like this?

lieze

[DESPERATE DEB]

Hi Lieze,

I was really sad to read what you're going through, as if your health is not bad enough on its own. It puts my own problems into perspective somewhat. It's terrible that you're having to deal with so much at the same time. I can only pray that these problems subside and you can start to feel better. For me certainly, I find that stress seems to trigger bad espisodes so it is definitely something you don't need, and you appear to be getting that from every direction. I cannot believe how the people at work are treating you. I would definitely get that out in the open before too long. Pull them to one side and ask what their problem is. In work environments, its normally jealousy or something else quite ridiculous. Like being back at school. Shame on them and then not having the courage to let you know why.

Take care.

Debx

[erickamcc0523]

Yeah, it's very difficult to deal with some people... I'm sorry that you all have your own sources of grief to deal with; I also know everyone's pain--all too well, unfortunately.

I have only told one friend and my cardiologist about DINET. They both are very supportive about me being here. My friend is because being pretty much completely healthy himself, he doesn't really understand (although he is as supportive and sympathetic as he can be) and is glad that I am connected with others who do understand quite well. My cardiologist is because, even though he has about 10 other POTS patients, he proclaims his ignorance about treating POTS, and is supportive for me to try anything (well... not prescriptions unless he prescribes them, but anything OTC or involving my diet) that will help control my symptoms. I think he is almost as frustrated with POTS as we all are, and he wishes that there was more he could do.

My parents... well, they are a completely other story. My dad was exposed to Agent Orange when he was a soldier in Vietnam and has since developed heart disease, Type 2 diabetes, and most recently, kidney disease. He has been having difficulties with his cognitive function (even more than what I have most of the times) so I am very patient with most of his questions ("So, you're cured now?" or "When are you going to get better?" or "Why are you taking that medicine/putting that much salt on your food/drinking that much water?") and the fact that he repeats himself much of the time, since he repeats himself and asks the same question again and again all of the time, not always related to my illnesses. My mother is, at times, purposely (at least I feel so) dense and uncaring. When I am having presyncope and I have to sit down or recline instead of actually "doing something" (I am... I'm trying not to faint!), she'll yell at me for being lazy. When I try to tell her exactly how bad I'm feeling, either with the POTS or the JHS because I've just dislocated something, her eyes glaze over, and I can tell she's tuning me out. I'm actually somewhat glad that she had an allergic reaction to something last week and had to get a steroid shot and a medrol pack, because she has been having dizzy spells, hot flashes, tremulousness... basically a medically induced POTS, without the orthostatic tachycardia. I've told her a few times that is how I feel every single day, and she doesn't seem to get it, yet, but I haven't been told how lazy I am since I told her I feel like I'm continuously on steroids, so there is some progress, I hope.

Most of the people that attend school with me don't really know about the POTS. I don't normally feel like explaining exactly what POTS is, so I just mention that I have a heart condition. I have told my professors, so if I do have to miss a class, they make sure that either someone takes notes for me, or they will give me a brief lecture outside of class (thank God that I am taking two "easy" classes... Cultural Anthropology and Music Appreciation). The very few classmates that do know also have health problems of their own, so we have formed an unofficial support group. One of these people is an older gentleman who has Congestive Heart Failure, and he has been a really great source of support as well. When I have to use a cane (he has to have one most of the time), we'll compare our canes and give each other tips on how to use them, along with sharing funny stories about being "gimps".

I have been trying very hard to react with charity and patience towards people, especially my mother. I'm not quite there yet, but I think that I'm better than in times past. One of my favorite quotes in regards to dealing with difficult people is from St. Josemaria Escriva: "Don't think 'those people bother me'. Think 'those people sanctify me'."

[mvdula]

Wow, can't believe you just quoted Josemaria Escriva. We know lots of people in the Work, and are somewhat involved ourselves...small world! Hard to keep the faith when you have so much suffering...definitely a mystery!

[erickamcc0523]

I'm personally not a member of the Opus myself, but two dear friends of mine (and wonderful prayer warriors.. I'm glad to have them on my side! ) are. One is a member, and the other is her spiritual directee. I have been reading "The Way, Furrow, and The Forge" for Lent, and while some passages are very difficult to hear, they have been very helpful... perhaps the most difficult passages end up being the most helpful.

You're right, it has been very difficult keeping faith since my diagnoses, and half of the times I don't even want to go to Mass on Sundays, but it is only through the grace of God that I keep going. It is His grace that has helped me to realize and truly understand the difference in being loving and feeling loving, and being faithful and feeling faithful. I'm certainly not feeling loving and faithful right now, but I'm not too terribly concerned about my lack of feelings, and each Sunday morning, if I am physically able, I get up and pretty much drag myself to Mass. When I first experienced this, I talked to my spiritual director about it, and he mentioned that just as many graces were given to someone who didn't feel like going to Mass as someone who was very excited and happy to be there, and perhaps even more because it was a greater act of love. Perhaps that is the truth, because if I had been diagnosed with these two life-altering illnesses back when I was the "angry atheist" (either I didn't believe in God, or I was so angry at Him that I didn't care), I would have quickly sunk deep into the quicksand of despair. Not to say that I don't touch it from time to time, but I do believe that I would be so much worse off then than I am now.

Another favorite quote of mine (unfortunately brain fog is making me have to paraphrase it) is from St. Teresa of Avila, about how Christ gives the gift of suffering to His closest friends. In even attempting to view these maladies as a gift, and as a way that I can draw closer to Christ has made them not so difficult to deal with. But you said it! Definitely a mystery!