The Last Straw

[all4family]

Hi Everyone,

Well I have still been trying to hold on to the thought that this was just a small set back for me, and I was still getting better. Yesterday I started in with not being able to eat again, even when lying down. Now I am vomitting again. I can't stand without feeling like I am on a boat. And unfortunatly I feel like that when I am laying too. My neighbor noticed I was loosing weight, and "complimented" me which I need to lose it, and if I were even trying to it would have been a compliment, but it was just a reminder that I have no control of anything with my own body. This is how it began for me with my other 2 really bad crashes that left me completly useless. I am really scared, and depressed about this. I am afraid of going back to doctors who don't believe me, and only can offer me things that in the end make me feel sicker. I feel like there is no help for me. I really don't want to live the rest of my life like this. I am sorry for feeling sorry for myself. I am trying so hard to just be OK with this, but I am not. I am tense everywhere and really don't know if I should blame the disease or just being so dang scared of going through this again. I don't know where to turn, except to you guys that understand. Even typing this is leaving me so confused. I really am sorry I feel like such a complainer. That is not my personality. I really wish I could just have some hope right now. Thank you all for listening, and allowing me this outlet.

Suzy

[babettess]

Suzy,

I am so sorry you are going through such a rough time. The unpredictability of this illness is just "too much" sometimes. Please come here and vent whenever and as often as you need. We do understand.

I know how scary it is to feel like you are sliding into a major flare or POTShole as I like to call them. Keep hope and remember to do all the things that have helped in the past. For me, this is very difficult to do as I tend to "forget" what helps when I start into that downward spiral. If that is the case for you too, maybe ask someone close to you if you are remembering to do everything that helps or maybe just read on here to remind yourself.

Don't beat yourself up too badly. You have a lot going on in your life right now and maybe when things calm down a little, you will feel better.

You will be in my thoughts and prayers.

Babette

[all4family]

Thank you so much Babette. You are right I haven't been thinking of the things that help me. instead I have been punishing myself for not being able to do things. One of my big helpers is not to get emotional. And I mean all emotions weather happy, or sad, or angry, or scared. I kind of have to stay blunt to everything. I do feel, but can't do it on large scales. The other thing is obviously laying down. I guess I just figure I was doing better "maybe I reconditioned myself, you know like doctors say, and I just need to keep going!" HA!

I definatly feel like this is "too much"! Thank you for your thoughts and prayers. They mean so much to me.

Suzy

[mjan]

First of all you have had TOO MUCH to deal with.. right?

BUT.. I know what could help you feel better. A doc or two who KNOW you and your problems that would aggressively tackle your issues/symptoms and be THERE FOR YOU to call or come to!! Right?

So.. I do believe in miracles...and YOU deserve one.. or twon

Warmly Jan

[firewatcher]

Hi Suzy, keep whining, I'll bring the cheese! I still think we all need to have a pity POTS party. When it stinks, it stinks really bad! But we are all here for you.

NEVER be afraid to vent, scream or whine!

((((((((((((((((((((HUG))))))))))))))))))))))

Jennifer

[all4family]

Hi Jan, yes deffinatly too much to deal with! And with my house a disaster it doesn't look like it is getting better any time soon! I would so like to find a doctor who could help me without making matters worse. Everytime I try I end up so much sicker with the meds and the dyes. I would go to a natural path, but the worse thing is that I tried that already, and some homeopathic thing I took set my skin on fire and I had a rash that looked like a sunburn all over my chest and face. I also nearly coughed myself to death for over an hour. So even the natural stuff affects me, and with my history I am just so scared to try anything. I always go into these things saying ok. nothing is going to happen. You have taken this stuff before, but that doesn't help. The thing is I was willing to try anything, or I was. It would be a miracle to find a doc who could help. And a radical miracle if they were on my insurance!

Jennifer, Thank you, thank you, thank you, for permission to whine! I really need it! I think a pitty POTS party is just in order!!! I can't tell you how many times I sit in front of this computer, and cry tears of sadness, anger, happiness, but the best ones of all are the ones of relief that you cry just knowing someone else understands, and is there for you! Those are the ones I am crying now! Thanks a million for your support!

Hugs and thanks

Suzy

[erikainorlando]

Thank you for your posting!! I was trying to do some paperwork here and have been trying to hold back the tears myself. I thought I would be better by Thanksgiving..then Christmas...then by spring break and certainly by summer...I went out today and got sooo dizzy...confused...sick.....(it was very hot)....this is hard sometimes. You are not alone.

I am all for trying to find docs with some answers....I know we (I) get scared that they won't be able to help me or belive how awful I feel but I knnow we have to try....

You are in my prayers.

Erika

[gertie]

I think you have something to complain about. This disease has so many ups & downs you wouldn't be human if you didn't vent. It helps me to come here & pour my feelings out to someone who understands. My house is on the verge of being out of control. When I try to get my DH to help & take an interest in how things look he just tells me I'm the most negative person he knows. The natural products I've tried caused me as much problems as what the dr prescribed. My hope for you is you find a dr that understands your problems. It took me 25 years to find a dr that had heard of dys. but he doesn't really understand. When you need someone to talk to, come here.

[potsgirl]

Dear Suzy,

I think you and I need to get together and have one long, commiserating talk session! I'm really sorry that you're feeling in such a bad way again. Please make your appointment at Mayo (and let us know when it is) to try to get to the bottom of this. I hate to think that you may be needlessly suffering. I know it seems like a lot of work to get to Scottsdale, but it'll be for the best in the long run. I'm thinking of you and praying for you. This will pass...

Hugs and positive energy,

Jana

[janiedelite]

Hi Suzy,

First of all, I'm sending a gentle hug! Second, there ARE doctors out there who will believe you and help you. For me, going to Mayo provided us with reassurance of that fact. That in itself is so comforting, which helped reduce my anxiety, which helped my symptoms lessen somewhat. The neurologist I saw was determined to find answers for me. We had to stay a couple weeks, but my hubby had a month of leave set up if we needed it. We just wanted answers. You've suffered for so long! I just can't imagine having the physical issues that you deal with.

I really hope that your body pulls out of this slump soon! In the meantime, we'll be here for you! Janie

[all4family]

Hi Everyone,

Sorry I haven't written earlier. Today was a really bad day for me. Your supportive replies got me through the day though. I wasn't able to hold my head up for very long today, but would go to the page, and read. Thank you so much.

Erika, thank you so much for the prayers. That means a lot to me. I am sorry you are going through this too. It is so hard hoping that things will change, and waiting for the big "cure" that just doesn't seem to happen. I will be praying for you too.

alicia, thank you for the understanding. I think when I first got sick I was conditioned to put myself down by doctors saying things to me like "you are taking up room of real patients that need help". It kind of conditioned me, to feel like I don't have a right to complain. I don't mean to sound stupid, but I have seen the initials DH a lot, and I know it means husband, (I think), but what exactly does it stand for? My mind goes to dumb husband!! ha ha!! Just kidding. Sorry he says that to you. He should be more supportive. Thank you for the support. I will come here. It feels so much better to talk to people who understand.

Jana, Yes we do!! Comiserating with someone who understands sounds so good!! I really need to get my appointment reschduled, but I don't think I can make the trip right now. I am going to have to wait for this to pass. But as soon as I can we have to get together! Thank you for the prayers. I am praying for you and your boyfriend also.

Janie, you are always so sweet. Thank you so much. Mayo was the one place that really seemed to understand for me. I do feel better about going there, but I truly wonder in my head what are they going to do? I have tried so many different medications, and that turns out bad. Unless it is something natural that I don't react to I don't know what to do. Maybe there is some magic help out there I haven't tried yet. Thank you so much for your support!

Hugs and thanks to all of you. Please forgive me if any of this doesn't make sense. I have been very confused today. You are such a great bunch. You guys (girls) ARE the silver lining!!

Suzy

[Broken_Shell]

Suzy,

Oh how my hugs and prayers are with you! I know it doesn't make it much better, but we all understand what you are going through - physically and mentally, and we are holding you in our hearts and thoughts. Have you been able to keep anything down yet? Do you have any anti-nausea medicines that help you? Have you tried adjusting any of the meds that you can tolerate? Do you have a doctor that you can talk to about a brief inpatient admit just to get some fluids in you? Do you have a good support person or primary doctor to start with? Please keep letting us know how you are doing. Hang in there, but if you can't let us all be there to catch you if you have to fall.

~ Michelle

[all4family]

Hi Michelle,

Thank you so much for your concern. I am feeling much better today (so far). When I vomitt it is not from nausea. It never gets past my esophogus. (which is probably why it is dialated!) I get horrible chest pain, and short of breath sometimes too. then it just starts coming up one mouthful at a time until it is all gone. (sorry probably way too much info!) It is an exhausting process. I have felt like there was too much stress, and that was what was causing this, but I didn't know what was stressing me. Last night though when I was talking to my mom I figured it out, and did something to change the problem. Afterwords I was able to eat, and I kept it down! I just ate, and so far so good, although I have a little chest pain. I don't have a primary care doctor. I just don't have much luck with those. Although I am working on it. I do have good support usually. I think if I can keep keeping things in me I will be doing better. Thanks so much for being there. I really have never met such caring compasionate people in my life as the ones I find on here. Like you! I hope you are doing well. Take care, and thank you again!

Hugs

Suzy

[EarthMother]

Last night though when I was talking to my mom I figured it out, and did something to change the problem.

Gosh talking with my mom would cause me to toss my cookies!

Take care hun. This is an arduous journey and you like most of us are in completely uncharted waters. Hang in there. You are doing an amazing job.

~EM

[all4family]

Hi EM,

Thanks for the laugh! You always have such a way with words! I think I will always remember one of you first posts to me with the doctor, and how you said to go in there with my clipboard! I haven't seen you around much, (then again I haven't been here as much.) I hope you are doing ok. Take care.

Suzy

[morgan617]

Suzy, right now I can so relate. Mine isn't OI, but it sure isn't helping things. We all get so overwhelmed at times, we wish we could just be whelmed as opposed to under or over.

It's funny, not haha funny, how when you are chubby, you must be healthy, when you are skinny, gee you look great. You can't win. I tell people these aren't diets I recommend to anyone!

Do any of the oldies remember the t-shirts? "But you look so good", etc? I still wear one in particular when I am unhappy with a doctor, but I digress. I am sorry you are going through such a rough patch. I carry a little bucket with me everywhere now, what fun. It hits out of the blue, so I am stuck at home. Mortifying to hurl in a public place.

I do hope this is a bump as opposed to a mountain for you. A good whine is good for the soul.....morgan

[all4family]

Hi Morgan,

Thanks so much for the understanding, but so sorry you are in the same boat! It's funny becaus the last time I seen a doctor he said I was eating myself to death! Then when he asked about my appetite I was honest, and said some days fine, some days I can't eat. He said well your obviously eating somthing. The doctor before him had to mark on my extreme rapid weight loss. (this was the doctor that diagnosed me, and I had just lost 30 pounds in one week from seeing hime the first time.) I sometimes feel as women it doesn't matter what it is that we are sick with it will somehow be "our fault."

I am glad I am not the only one who gets public vomitting. I don't feel exactly when it is going to happen, other then the chest pain, and it has a tendancy to come out of all holes with force! Sorry so graphic. And you know for some reason people just don't like you to lose it on their floors! I carry a cup, with a lid. When I am sick my whole family checks before they drink!!! ha ha!

If whining is good for the soul my soul is VERY good!! Thank you for sharing, and I hope you are having a better day today.

Suzy

[tinkerbella]

dear suzy,

My goodness you sure have a lot going on. I just want you to know that I just prayed that things calm down for you and may your life return to normal.

I often feel like I live in the WORLD OF ABBY NORMAL. My PC, will often say to me ,"no don't take this med or that med as they are worse than the cure."

Plaquenil was one she saved me from the rhummy putting me on years ago. I looked to see if you listed any meds as I'm so sensitive to meds and wondered if one was making you lose weight. My topamax made me lose so much weight, that I would cringe when people would say would are way too thin. I'd try to hide in big clothes and then I stopped it gradually. Then I needed it again For the migraines, so I yo yoed with my weight. Now I'm just right.

take care and I wish you well.

Blessings and Love~

BellaMia~

[janiedelite]

Hi Suzy!

I don't know where my brain was... I forgot you'd been to Mayo already! I just feel so badly for you. I wish there was a place you could go or someone you could see who would give you some relief, if not at least some answers. I'm glad you have such a caring family. Please continue to let us know how you're doing. I hope you pull out of this slump soon!

Janie

[all4family]

Bella Mia, thank you, thank you for the prayers. I don't know if it was one medication that really pushed me into the deep whole, or the onslaught of medications that were first tried on me when I first became ill. The last one I was on, and the one that was a living nightmare to get off of was xanax. After a year off of that the vomitting slowed for me, and then I started gaining weight. The farther I am away from that drug the better I seem to be. (although it has been 4 years I am hopeful that maybe just a little more time, and I will find that that was the cause of all of this.) It was kind of funny, because when I was on the drug, I was the thinner then I had ever been in my life, and when I was told I had anorexia, I nearly fell off my seat! I tried to tell them that something else was wrong, that I had been overweight most of my life, they said it is not about a weight, it is about a relationship to food ! I am overweight now, but really fear losing weight, because that is what happens to me when I am sick! And in all truth and honesty I would rather be fat, then sick! (Gosh before I got sick you never would hear me say that. I was "jealous" of people who were just naturally thin!) How stupid I was!

Janie, you are so supportive of everyone here, I sure wouldn't expect you to remember details of everyone. Being to Mayo was the best thing that ever happened to me. I at least have gotten answers there, way more then I ever expected to get. I just sometimes wish the answer was you can get better from this. Thank you always for your support and caring. I am glad you are on this board. (just not glad you are sick!) Take care.\

Hugs

Suzy