Venting About Not Feeling Well :(

[misstraci]

I just need to vent, and to my family, I am such a broken record, so, you all get to hear it this time!

I'm so over this, so sick of being sick. Nothing is helping, if anything, I'm getting worse. How can someone feel like they are going to pass out every single day for 3yrs straight and get no answers for it. I'd almost rather have some other terrible illness because at least I'd have a name for it and at least I'd have a fair fight to get better. Right now, It is "suggestive POTS" meaning my tilt table test was suggestive of POTS and vasovagal syncope. That's wonderful but that's not what's wrong with me, there is a root cause and I want to know it and why is it not showing up on any test. How can I feel so horrendous and yet blood work says i'm healthy, that's messed up. I'm spent countless time, money, and energy on doctors. I wouldn't know who to go to at this point or even what to say. It's almost like I've been around the world and now I'm back at the beginning.

I'm lightheaded, seizury head feeling, tachycardia, my vision goes in and out...... I feel like I'm having a heart attack a lot of times and god forbid I ever did, I'd probably just sit there and take it because I've trained myself that these feelings are "normal" for my mystery illness. I promise you if anyone I know felt like I feel, they would be up in the hospital or laid up in bed yet, I somehow manage to zombie through a day.....work, train, kids, take care of myself, pretty much everything but drive a car. I'm lucky to shower twice a week, I'm terrified of passing out in there. I walk around doing these things but feel like im in a different world, a bubble, behind glass, i can't explain it. I'm miserable. I'm jealous. I'm jealous of everyone else who is even half way healthy and can do normal things. All I want is to feel half way human enough to drive a car again. I want my life back.

So how did this begin, I'm not sure but I have a pretty good idea that it started after I had my son three years ago. I lost a lot of blood during delivery, something happened to my heart and i had tachycardia (120s at rest) that wouldn't go away, they gave me two transfusions and sent me home. After two episodes/ER visits of severe hemmoraghing and clots, I had surgery for placenta accreta (retained placenta). I was given iron supplements and that was that. This all happened from February to April and then in October is when I first "blacked out" and it has been down hill since. Prior to October we'd been visiting a nearby creek/trail, we went apple picking... so, did I get a tick and have lyme, is it related to my postpartum issues. Is this completely seperate of all things. Maybe I don't have POTS/dys at all, maybe it's just something similar with similar symptoms.

All I know is that I can not continue to live this way, it's almost inhumane in my opinion. I've been on ssri, snri and i forget what else. I'm sure my medical records list me as the crazy, hypochondriac patient and I've gotten the anxiety card from just about everyone I've seen. I also get the "you need to eat" comment, I can't help that I am tiny. Why does every little person have to be assumed as anorexic. I want to be taken seriously, I want more tests, I want answers, and I want to feel better waaaaaa waaaaaa waaaaaa......

[bebe127]

Misstraci,

OMGoodness!!! You have said exactly how I feel, in fact, I was just getting on here to write a very similar rant and saw this and it pretty much sums up my life over the last 3+ years.

I so wish I had answers for you, but at this point, I can only commiserate.

I too, am so sick and tired of being sick and tired. I'm tired of life passing me by. I feel like such a disappointment and a failure to my husband and children. I just want to wake up one morning and this all be a sick twisted dream.

I so relate to your first paragraph (well all of them really). I question too how someone can feel so crappy and yet tests reveal nothing. I had a TTT and was dx with "what is probably POTS". I woke up this morning feeling my usual crappy self and took my vitals and they were fine (116/87 hr 77) I mean, go figure??? How can this be???

My daughter and I write a diary of sorts back and forth to each other just to keep in touch. I homeschool both my teens and after that and certain chores, if I'm up to them, I feel spent. So most of the time I'm either their teacher or the maid. I don't feel like I get to spend any time just being their mom. My daughter would love to just get out and go to the coffee shop or to the mall or anywhere really and I just can't do it. It kills me! For sixteen long years, I waited for this moment in time when we could go do mother-daughter things and grow our relationship and now that the time has come; it's just passing right by. She does a lot with one of her best friends and her mother. I have to admit, I am so jealous. This mother takes then all over doing all the things I long to do with my own daughter but can't. On top of it all, I feel like my son's life consists of virtual life on the computer, because he doesn't really have much of one outside that. I just want to cry, scream, beat up more than a few doctors and just crawl into a hole all at the same time.

"I'm lightheaded, seizury head feeling, tachycardia, my vision goes in and out...... I feel like I'm having a heart attack a lot of times and god forbid I ever did, I'd probably just sit there and take it because I've trained myself that these feelings are "normal" for my mystery illness. I promise you if anyone I know felt like I feel, they would be up in the hospital or laid up in bed yet, I somehow manage to zombie through a day" I swear, you must be in my head because this is exactly how I feel. The "seizury head feeling really caught my eye as I feel the same way at times. It is so hard to explain. I tend to ignore these feelings and count them as normal too, after all dealing with this for 3+ years I've just gotten used to feeling crappy. Nothing really surprises me anymore.

One thing that I've noticed over the years is that I have no motivation at all. I only do what is absolutely necessary of me and nothing more. I don't "want" to do anything. I was always a homebody type of person, but still went out and did things and had fun. Now, I have no desire whatsoever for anything and I mean anything. I have no desire to leave the confines of my room. I have no desire to leave the house. I have no desire to have desire, if that makes any sense. Anything I do, I have to force myself to do it, anything. I try, I really do try to focus on the positive, but sometimes the positive is so elusive, I think at times it's just gone. I so envy those people that are strong and courageous and just force themselves to be normal. I so wish I could be like that (sometimes I want to punch them too) and I probably can, but I just don't have the energy. It's like I'm just stuck in this sucky world with no way to turn it around. I have no one to talk to about all of these feelings, that's why this site is so great, but sometimes I feel like I just need to get out of my "virtual" world and DO something! I feel so selfish at times. I've tried therapy, but sadly, I think that she's the one that needed therapy

I don't know how I got this dreaded illness either and no one has even ever suggested finding out. I am considering a new EP, but do so with trepidation as so many of my appt.s end so negatively. I am also considering another dr., she is an MD by also works with homeopathic stuff I think. I have a friend that has gone to her. She doesn't take insurance, but if she can help, I don't care how much it costs. My friend says that she starts at the beginning and checks everything systematically so as to get to the root of any issues.

I've been dealt the anxiety, it's all in your head card way too many times as well. It's days like today that I begin to question everything, the dr.s, myself, my sanity. It's all enough to make a sane person go crazy.

My dear daughter just came in and asked if we could go somewhere...UGH! I hate that I disappoint her on a regular basis.

I hate it, I Hate it, I HAte it, I HATe it, I HATE it, I HATE It, I HATE IT!!!!!!!

I'm sorry I'm adding to the misery. Just know that you are not alone. I am going to try to keep on keeping on and I hope you do to; it's all we can do. Like my husband always tries to remind me: "This is not in my head, there is something physically wrong. We can't change it or control it or make it better, but we can choose how we respond and deal with it." Guess I need to listen to him more often

So hoping you feel better soon! {{HUGS}}

[HopeSprings]

I'm right there with you, girls. Everything you said - yes, yes, yes. Having a really bad couple of days myself and can't muster a long response, but just wanted to say- I know, I understand, I get it, and ME TOO. But we've got to hang in there and hope some answers are around the corner. ((hugs))

[Altruism]

I am soooooooo sorry and I soooo know how you feel! Me too!!! I'm a failure, no one can suffer the way I do, I want to be able to take my child out, I question my dr, my dx, my meds, my sanity too..

I refuse to believe treatment is around the corner. I want help now! I'm upping my SSRI like crazy, upping my benzo, starting a BB and an antihistamine in case it's MCAS... I need relief TODAY. So sick of it all. Hugs...

[Altruism]

And we're so young, it's not fair!! We're not even 30... Why?!!

[misstraci]

Thank you guys for responding and "getting it". I'm sorry you feel crappy too but at least we aren't alone, at least someone else understands.

BeBe....We could be POTsy twins, sounds like we have a lot of the same issues and concerns. My BP and HR are often normal when I check them despite how terrible that I feel, it's so weird. I'm sorry that you have to turn down things with your daughter and that her friends mom is doing the things you wish you could do with her. I feel like that too. My kids are a little younger but still. My daughter wants to do activities (gymnastics, softball or whatever) I can't drive, I can't take her to these things. I depend her father for so much already (and he dislikes being my caregiver/driver as it is) I'm not about to ask to drive me more places. As far as the homeopathic DR your friend suggested, I think that is a good idea. I just hate that those types charge so much and don't accept insurance. What your husband says is very true!! I try to take what I'm dealt and deal with it as best possible because thus far, nothing I've done has changed it which shows me, I am not in control over this Thank you..... Big hugs and well wishes to you too.

Naomi.....Sorry about your bad days here lately. Like you said, we understand and get it and all of that. (unfortunately) I really hope you start doing better. Thanks for writing.

Altruism...... We are so young, it's not fair, not at all and I keep questioning this whole thing, why why why Thank you for writing and I'm glad you understand and can relate. Keep trying your different meds, I hope you find a combo that helps. I hate taking drugs and I don't trust any or many of the DRs that i've been to for various reasons so i havent' taken anything recently. I want relief TODAY too. I can't help but think this is hormonal related. Not all but a majority of us are female and then in addition are also in the "childbearing" ages. Everytime i've had my "hormones" checked, I'm told they are normal. then how come that week before, during, and after my period intensifies things to no end. Things are SO much worse!!! not just a little or vague changes like I think some people believe but, for me, it's so much worse. Anyways, I'm rambling. This all started after my baby too. I think it's all related. Blah.

I hope you guys feel somewhat better today! Thanks for writing me, it means a lot

[E Soskis]

I'm so sorry - I sure can empathize with everyone that feels bad all the time. It makes me sad to see how many people live on a day-to-day basis feeling pretty awful. I'm definitely not "young" - I'm 52 and have lived with periods of extreme illness most of my life. In fact yesterday, after my plasma exchange, I came home feeling like I should be 6-ft under instead of above - cried all night from pure physical misery and questioned why in the world God would allow me to live this way. I guess the old saying is true - what doesn't kill you makes you stronger. I wish there were simple answers to how we should cope and respond to chronic illness. For me, I had to hit rock bottom to realize that there are different "seasons" of life - I may be sick as a dog for a period of time but, that doesn't last forever - a new season comes and with it, renewed hope and vitality. Yes, the illness returns and I the cycle starts all over again - but, the new season is coming.....

I encourage everyone to hold-on, hang-in, and keep venting to the forum - we all have been through more in a short time than most do in a lifetime - you all have a type of wisdom that only comes from these extreme experiences. I know I learn something from each and every one of you and really appreciate what you bring to the forum. Bless you all - I keep you all in my prayers and thoughts.

[Katybug]

miss traci,

Sorry you are in this space in your head. I have been there myself the last few days and I am ready to bite someone's head off...literally hoping for someone to come along and give me an excuse. I am irritated by so many people causing me to have to redo things (which makes me spend energy I don't have and was saving for something important...like making myself a sandwich for dinner!) People just don't get it. When I got my allergy shot today, the doc asked me how the approval for Xolair was going, I told him his office hadn't called me about it yet, so he told me to talk to his assistant. I did and she called the lady in the other office, we all talked and then I left the office. I was almost home when they called me and asked if I could come back to sign a form they need for it or what my fax number is? ARE THEY SERIOUS??? First, they know someone else drove me today because I couldn't drive myself and that I was not well; second, how many people have a fax at home???; third, they scanned and emailed me the form as I asked during this conversation with an instruction that says to fax it back to them (see item number 2 for why that is ridiculous). I'm still trying to figure out why I can't email the signed form back to the person that emailed it to me...no personal HIPPA info on it...just my signature. I'm sick...if I could keep re-doing paperwork all the time and if I could leave my house whenever I felt like it, I would have a job and not be in need of these Xolair shots!

Wow, it felt good to get all that out!

[Concerned Husband]

I just wanted to say I do feel for you guys. I've seen my wife deal with this illness for a few years now and it breaks my heart knowing there are so many of you guys dealing with the same things. I understand the frustration you're going through but try to keep hope alive. My wife went from being where you guys are now to getting medications that worked for her. Don't give up and try not to bite anyone . Seriously though, I'm praying for each of you.

[angelloz]

Exactly!!! Well said ladies! I soooo wish a doctor could step inside my body and live it all for just one day. Bet that would end all the...I believe there is an anxiety component to your problem blah, blah, blah. I did see Dr. Afrin in October and tested positive for MCAD. Tryptase of 18..elevated prostoglandins and a couple of other things. Trying some meds but not tolerating them too well. Think I'm feeling a tiny bit better then wham...that horrible... I'm not going to make it feeling...do I call 911...or????? Lay down and pray. Well let's all stay hopeful, keep sharing information, and maybe we can improve. Hugs to all.

Angelloz

[badhbt]

Angelloz,

I agree with you, if a Doctor spent one day in my shoes, I KNOW they would be running every test under the sun on themselves. I had a Doctor tell me that there wasn't anything she could do. She said if we keep running blood work something is bound to come up abnormal....???

If I could just give her some of this POTS goo

[misstraci]

thanks everyone for writing!

I agree, if only a doctor could fill my shoes for a day!! and badhbt, my current PCP told me he's done all he can for me and that sometimes people just end up with things they have to learn to live with....... i'm looking for a new dr. I refuse to live like this, i can't do it.