New Here And Need To Vent? Jealously Anyone?

[Ash]

Hello Everyone!

I am new to this forum and am so thankful I found it, there is so much great information!

I wasn't going to post anything, but I am hoping I am not alone in this venture and well I don't have anyone to vent to about this topic so here I go....i will try to condense everything as best i can, but i am sorry if I put you to sleep ; )

So 3 yrs ago I got really sick with a sinus infection and pneumonia 7 antibiotics and steroids later and 5-6 months for good measure and a few hospital visits I was able to get rid of it. However, I never truly felt "better" so my quest for answers and many doctor visits began. Then I started dental hygiene school, I struggled on and even started to believe the doctors when they said "I am too young to be sick" "it is all in my head" "your depressed (although i was the happiest I had every been in my life,despite the being sick part), etc,etc,etc....so I tried an antidepressant with no real relief and struggled through school, I graduated and started working my husband and I bought a house and continued with life all the while, I was fatigued, had constant GI issues and was noticing that I was becoming more dizzy and lightheaded when standing, even passing out, back to doctors and still no answers (also had many ER visits while in school for these problems). Then about 1 yr ago, I got home from work one day and barely made it in the door, my stomach hurt bad and I was passing out..so off to the ER again (yes by this time they knew me by my first name) I spent 5 days in one hospital and then was transferred to a bigger hospital 3 hours away and spent 7 days there. They grasped at straws, I was poke, prodded and had my gallbladder out and sent home (no gallstones they just found scaring) I expected to get better and I got worse, I couldn't stand most days, back to a new doctor and she found a bacteria infection in my blood and very low vitamin D levels and borderline B12 levels, got IV antibiotic for 5 days and 6 weeks of erythromycin (I am allergic to penicillin, keflex and another that I am not sure how to spell correctly ) during this time I was sick which most of you have experienced my heart rate was soaring, I was dizzy and so nauseas I was puking just standing up and having some very lovely other GI issues. Finally went to ER they didn't know what was wrong but did tell me my HR jumping as much as it was, was not normal and I needed to see a cardiologist. As soon as I got home I typed in all my symptoms into Dr google and found POTS, I couldn't believe after all those years there was something out there that fit everything I had been feeling...so I went off to the cardiologist not expecting a diagnosis of POTS or for him to even mention it (I had a huge stack of print outs on it just in case ) and as soon as he listened to my symptoms and saw my heart rate reading both in office and from my Emergency room visit(s). He told me that what I was going through and what I was feeling wasn't in my head, that I wasn't depressed and I wasn't too young to be sick (23 at the time) and that all of my symptoms sounded like postural orthostatic tachycardia syndrome.i do feel very blessed to have such an amazing cardiologist and although I am not really feeling much better then a year ago, I am at least coping some what better to the many symptoms.

So here is my dilemma, in the last 3 yrs that I have been sick and 1 that I have been really sick. My husbands family (I don't speak with my parents much, long story. And all my family is in PA and DE I am in CO so even if I did we are a little too far away for much support) my husbands parents who live 4 miles up the road, don't seem to care, I am not even sure they know I have a diagnosis, heck my husband who does try to be supportive doesn't understand it. And it is okay that my "family" doesn't ask questions, our anything else but what is making it hard at least for today is that my husband who has been having more colds and trouble sleeping this past year as well, went to a specialist (FIRST ONE) and got a diagnosis and will have his tonsils out in 8weeks and spend 1 night in the hospital a week or two on the couch and the doctor told him that he will be a new person feel 100% better. And his parents are asking questions, want to be involved, go to surgery, etc. Heck I didn't even get a phone call the whole time I was in the hospital. And I know I should not be jealous but I am. It is so hard every day to pretend to feel good. And I just want someone who truly cares about me and what my life is like or maybe I am just jealous because he was able to get a diagnosis right away (which I am happy that he didn't have to struggle like many of us), or he didn't have to deal with that doubt of truly being sick, or that he has a treatment! I don't know I am sorry to rant, but this seemed like the only place I could. So thanks for listening(reading).

I guess my question is do any of you deal with this? With being jealous of another persons health? Or family support? I am sure I am not alone, this forum has proved to me that other people actually are suffering through all the same symptoms and I am so thankful for that. Because most days I feel like I am fighting a battle no one else understands or cares about.

[Katybug]

Hi there. Not feeling to good today but just wanted to say you're not alone. Will right more later.

[Tobiano]

Hi Ash. I'm also new here - I agree it's a great place with so much information. What a rollercoaster you have been through. I'm not quite sure what to say except we are listening and we do care.

[arizona girl]

Welcome to the forum, so glad you found us. You are not alone in your feelings, I think most of us here have been through similar situations of not being heard or understood and comforted. The best medicine for most of us was the validation of finally being diagnosed. No we are not crazy or depressed, there is something functionally wrong. No one wants to be sick, but it is a relief getting diagnosed, because then we can start trying to treat it and we have proof for the nay sayers. I myself went through some unimaginable things at the hands of one doctor and got zero support from my family. Basically got kicked when I was down. I'm still getting over the hurt feelings from that.

I finally gave my dad the link to dinet's "Changes" video to watch, so he would better understand. You might want to give it a look and have your family look at it too. It is the second pinned link at the top of the forum.

One thing that jumped out to me as you explained your medical problems, was your infection rate. As you are probably starting to understand as you read here pots is a syndrome and one form of dysautonomia. More often then not it is secondary to another underlying cause. Your infection for example could have caused some of your symptoms.

With kind of infections you've had, have they ever checked your "Quantitative immunoglobulins"? It is the master test to see if your immune system is healthy enough to fight off infection.

[Ash]

Thank you guys. I guess today I just hit my breaking point ....With everything going on and then I had to do a 4 hour presentation for work which required standing the entire time, I hated that the entire time I was talking I was struggling to stand, to talk to breathe, to not pass out, that all last night I was worrying over not giving the presentation, but if I was going to be able to physically make it through and about how sick i would be after and how many days I am going to be flat on my back because I was just doing one simple "normal" task. And then with my husband called me all excited with his news it kinda made me want to crawl in a hole and well just cry. So thank you for listening and replying. It really does mean the world to me. I hope the both have a good night. : )

[arizona girl]

Ash, I edited my post, you might want to reread it. You have a good night to.

[Ash]

Thank you so much Arizona Girl,

I am going to have my husband look at the video when he gets home.

I haven't ever had my immunoglobulin's checked I didn't actually know they could and will look into it. I know I was born a 6 weeks early and was in the hospital before 6 months with pneumonia, and had been pretty sick most of my life growing up, it never seemed to fail if someone is sick around me I will get it. So thank you for the information.

I am sorry for what you went through, I know it is not easy to not have your family's support. And I hope that your family is becoming more supportive as you continue on this lovely journey we have been dealt.

[HopeSprings]

Welcome. Yes, I feel jealous sometimes too. A lighthearted example... My husband mentioned to our PCP during his physical some various aches and pains that come and go, a back ache here, a shoulder pain there. Our PCP runs some blood and my husband immediately gets a positive ANA. I was kinda jealous and even said to him, do you know how long I've been trying to get a positive ANA? LOL. Then he did it again - they re-tested and he got another one! I was like stop doing that. I'm the one with all the symptoms, been tested for everything under the sun - can't get a positive anything if my life depended on it. That ANA should be mine. As far as we know my husband is fine and not suffering from an autoimmune illness. And here's another one - my husband has been sick the past two days (bad cold) and has had the luxury of lying on the couch for 48 hours while I do everything. Under normal circumstances this should be fine, even expected, but because of my chronic ilness there's this little part of me thinking I feel terrible every day and no one takes care of me, I never get to rest - this isn't fair!

I'm sorry your family is not more understanding/concerned. If you're like most of us you probably don't "look sick" so nothing shows on the outside, most people have never even heard of this diagnosis, and it's an ailment that makes you feel like death, but doesn't actually kill you. I think it's hard for people to understand how bad we feel no matter how hard we try to explain it. Now tonsilitis on the other hand -people understand that. It took me a long time to get my family to begin to understand. I'd say years had to go by with me complaining about the same things over and over before it sank in... she really must not feel well. Yeah, like I said. All I can say is keep working on them and I hope they come around soon to support you.

[boymommy3]

Hi Ash!

I am pretty new here, too. I have been so thankful for the wonderful information on this site. It truly is invaluable.

I am so sorry you are having to go through this without the support you need. I can sort of relate but not to your extent. I have had thyroid problems for many many years and so every single time I would start to have strange symptoms my husband, mom, and friends would just say, "it's probably just your thyroid". I even made myself believe that for a long time. Thankfully, now that we (husband included) are positive POTS is what I have, I feel a little more supported. Especially by my mom. She has MS and so very many of our symptoms are the same so she really can relate. I still don't really think my friends get it.

I can, however, totally relate to the jealous feelings. We have 3 boys and I get so sad sometimes when I see all the things that other moms are doing with their kids and places they go, and I am happy to get them to co-op, piano, and church some weeks. I feel so guilty sometimes. Like I am failing as a parent. I know in my heart that isn't true and it's just satan's schemes to keep me down, but there are times when I give into those thoughts and really feel bad about everything. I also get jealous of a friend of mine who seems to have the energy of the Energizer Bunny and never ever seems tired.

Just know that you aren't alone. I hope you find the support, encouragement, and answers here that will help you through this, I know I sure am.

God Bless!

[Chaos]

O yes, I can relate. Slightly different twist on the same theme....my husband had blood work the other day and his labs came in the mail. I was looking at them and while I'm really glad they're FINE, I was also kind of ticked because his diet is horrible, he hates to exercise, is overweight, etc etc while I've always been the one who ate carefully, exercised a lot, have a good BMI/weight, etc etc. So why do I have all the bad labs and all the health problems while he sails along?

Or another whine, my daughter and husband were working with some handicapped kids at a special program yesterday and they came home all excited about what they'd been doing. I've been housebound for the past several weeks because of illness so when my husband made a comment about the kids he'd worked with and how "hard it must be for them to always be left behind when other people get to go out and do fun things", I just turned and looked him straight in the eye and said "YES, it REALLY IS!". Seemed to get the point across and he had an "oh yeah" moment. We may not be as obviously impaired but it still affects our lives.

On the other hand, I guess every single person has their own challenges and burdens to bear and if we really knew what they struggled with, maybe ours wouldn't look so bad in comparison. Who knows.

[Ash]

Thank you so much everyone for your replies! It really helps to know that I am not alone in feeling this way, i was starting to think I was the only one! I guess sometimes a good cry is really needed and it helps to be able to get those feelings out. Thank you all for understanding, I promise I usually don't whine this much : )

[Rachel Cox]

Hi Ash,

I can SO relate! My Mum passed away before my diagnosis and so I lost the person who would have truly been there for me in a completely unconditional way. In fact, she always believed that I was sick when no-one else did. My husband has devoted parents (to him) and recently, after another hospital stay for me, we rang them. My husband told them I'd been in hospital and they replied
"but how are you, son? You sound like you might be coming down with a cold?".
Aiaiai. I would dearly love for them to show me some 'parental' concern and I am desperately jealous of the fussing they do over him. I guess he is just receiving the sort of love we all should get from our parents so I shouldn't begrudge him that. It is part of the grief of not having family in your own support network and boy does it sting when you see that love close range! I wish you did have that, Ash! Wish I did too. Glad you have a place to vent at the very least. This forum is so helpful for getting stuff like that out.
Take care and well done on getting through that presentation, four hours is a MASSIVE achievement!

[Ash]

I am so sorry about your mum giraffe.i haven't physically lost a family member just emotionally and so I can't fully imagin how hard it must be to loose someone so close.

Yes, it is hard, even yesterday I was struggling, his parents knew I had went to the ER Thursday and was too sick to get out of bed Friday and yesterday when we went over to their house I had to sit and listen to them tell my husband he needs to rest more and take vitamins because he sounds like he is getting a cold (which my husband of course ate up) funny how all morning long he never mentioned feeling sick..then I had to listen to his mom complain all day that she was feeling under the weather and had a long week ahead and had to take it easy...I wanted to scream! I mean here I am with a Pulse of 157 bpm standing here getting ready to do your chores because you have a head cold and you know I didn't feel good but let's not ask me how I am feeling just everyone else in the room. Sorry apparently I need to vent a lot! ; ) I guess though we have each other to understand and support one and other. So thank you for your kind words and please know that if you every need to vent or just chat I am here to listen : )

[SaraC628]

I too, feel jealous at times. I feel awful saying this, but I find myself being jealous of people that have cancer, well at least a treatable form. In the time, that I have been sick I know of someone that had breast cancer and after operations and treatments is now back to normal. I was really upset when my employer chose to terminate my employment after I had been off per doctors orders. They did not even inform me that there was a seperate process for applying for long-term diability or that I would still qualify after being terminated. The reason I bring this up is because this same employer was known for helping out employees after a serious accident or employees suffering from cancer. They would have raffles to raise money for them and all sorts of things. But because I was undiagnosed at the time they treated me like I was making it all up, even though there were instances at work in which I had turned white as a ghost and nearly passed out. I had also lost almost 50 pounds so they had to know that when I said I literally was not eating that it had to be true.

I have been really luck in that my husband is very supportive and very understanding. He never once has acted like I am faking it or exaggerating my symptoms. I also try to remember most days that I could be much worse than I am. I know that I question "why me", but I also know that everything happens for a reason and I continue to try to see the silver lining.

[Ash]

I agree SaraC! It's funny you mentioned people that have cancer because I have felt the same many times and feel horrible for being envious of them, I have a friend who went through chemo and did have a horrible go with her battle, but she is so active now, that I find myself jealous. Sorry you had a hard time with work,it can be frustrating having to constantly explain what you have and then have people just look at you and say but " you look fine". I am glad your husband is supportive, mine tries but unfortunately doesn't understand much about what dysautonomia is : )

[cupcakemomma5]

Ts. Sad and scary how many of us think "if it was this diagnosis instead of POTS ". We can wrap our heads around the diagnosis that we know of and is almost tangible, but people look at us and come on, we can read that big old caption bubble, with them thinking "yeah sure your sick!"

I am in the same boat with family cept my momma is so competitive, that when my diagnosis came in, she said, I think that's what all my symptoms are! All I said...bunny, you can Have them.

Hopefully made someone smile, just enough to realize crazy comes to everyone's family! I truly have the most functional dysfunctional family going!

[Ash]

Your post made me laugh cupcake mommy! When I was telling my husbands grandmother (in her early 60's) what I got diagnosed with and what dysautonomia is, she said the same thing your momma said even now when I try to talk to her about it (she is the only family member on his side that asks about my health which I am very thankful for) but anytime I talk to her about my symptoms I end up listening how she has all the same symptoms but still works part time, helps with the ranch, cooks, cleans house, etc....always makes me laugh....so I guess unfortunately everyone has a slightly functional dysfunctional family ; )

[Joann]

I do feel bad, but I also have been jealous of people that have other problems. I know two people that have had breast cancer in the time period I have had this dumb thing. One has reached her year recovery and is back to her life the other is struggling with reoccurrences, but in between her treatments she feels fine and is working throughout the entire time. Now, I know that their problems are just as big or bigger than mine. But I often am jealous.

One seems to be all better and both got support from family, friends and the community at large. Another guy has congestive heart failure and his family baby's him and yet he is in good enough shape to go away for a weekend with his guy friends drinking and hanging out. I don't get the babying and wish i could go away for a weekend.

Oh and I had the flu this past week and I got more care and sympathy from my husband and others than I have had in the past 16 months. I told my husband I would rather have the flu than POTS any day. He couldn't believe that I was feeling worse the days after the flu than when I was at my worst with the flu. Sometimes I have wondered if I am being a baby, but after the flu, I know that I am not, this thing is really as awful as I think it isl

One thing, you know how they say this is an invisible illness, well this illness has definitely changed how I look. I look older, more wrinkles, more gray, too thin ( i was always thin, now I battle to put pounds on) and just look blah. I guess people who don't know me well would think I look fine, but people who have known me for years tell me, they can tell there is something wrong. I won't post a picture of myself because I hate how I look right now.