hopeful-girl

LOL I Love road trips ;-) Yah I am actually going to post my letter here to share with you guys and have you help me pick it apart. I hope that is ok? I really do have troubles with writing. When I was going threw my fight with the insurance. It took me a week to write the letter. I had to keep re-reading it and re-wrtiting certain things and such. I can't stay focused and I ened up rambling. It is so hard for me to just get to the point some times LOL I won on my thrid leevl of grievance. But at that time I also sent a letter to the Oregon insurance comision. But I WON Yippee that felt good!

Hi Morgan. WOW your like me when it comes to the meds. I have sat on this marinol for amonth now LOL But I am going to take it for sure this week. Just like i am also sitting on some amitrityline for FIBRO. It really uscks being so sensitive to meds doesn;t it? I hate it! About 4 months ago I went in to get rehyrdrated. This was before the j-tube was placed or before i had TPN. So am I am the er My stomach is killing me I had a bout of heaves and couldn't stop throwing up. So they gave me 2 bags of saline and they started to give me Zofran and I was like AH wait a minute. She just stared at me. I told he to justs tart me out at hald the dose. Ya know what? She had a probl;em with that and told me know. Of course I enede up winningthat one. So they decided to give me pepcid in a bag thinking it will help my stomach pain. I had NOT complained about acid or heart burn or any thing. After the pepcid bag was almost empty. I GOT the worst heartburn and I got really shakey and anxiuous feeling and really felt like I was going to puke. I was so HOT but yet I was SO cold! I told the nurse and she just looked at me weird. She did agee I evem looked more pale but she was a B***** anyways. SO they gave me ativan and that helped a little. But it took 6 hours for that affect to wear off. But I hated the feeling and I went there to get better NOT worse ;-). What happens to you Moragan with meds?

Thank you all. I cam here to share in my frustration with all of you so I can vent here and be calm in writing LOL I know it will do me know good to write a condecending pissed off letter. I also do want to keep him if we can work threw things. He really was MY IDLE at first. He was the first Doctor to really was able to speak to and was very empathetic and compassionate. So it is like a stab in the back to read all this. I know that I have to write and re write and look at what I have written. Part of my sickness is being able to write and have it comeout the way I want it. I loose concentration easily and to write a very intellectula in depther letter takes me for ever ;-). I started writing it But I won't send it until I go over it with my Mom ;-). I thought he was for me not against me. I do think it is because maybe he is trying to cover his Arse for what ever reason. In my letter there is so far allot of why, why, why. Like why did you state this and not this. And asking for an explanation of his thoughts etc. Also at the end i stated I wanted this added to my records. Of cours I am NOT done with it yet. You guys are SO awesome. I just think it s to bad that all of us have to deal with Doctors being idiots LOL

So I have been accumulating my medical records so I can have them my self and organize them. That way when I do get to the Mayo clinic in Rochester I can be organized. So I get my records from my GI Doctor who I have really like and said was awesome. Well I was a bit taken back about some of the comments he has made. Comment #1 Last visit of July 28th he stated Symptoms have slowly resolved. GESSH what the **** is he talking about. When I had my j-tube placed I got a very serious staph infection that made me deathly ill. That resolved. But I never said oh I feel better or any thing has resolved. OH I am so mad about that! Then he also states I said I feel new pain around the tube. I never said that either I have the same pain and swelling!! ARGH!!! Comment#2 He also said the same visit I said I feel better than I have in months. THAT is NOT what I said. I said I don't feel like I am on my death bed any more tanks to this j-tube. I got so malnourished I got down to 95lbs and could not even get up. I was so dehydrated too!! I swear doctors are SO frustrating. Comment#3 June vist he stated under impressions: chronic narcotic use and then he goes to state. I again cautioned Corina on the excessive use of narcotics and she is doing her best to limit her self. OMG I can NOT believe this. I take oxycodone liquid. I can take up to 15ml every 4 hours. So that would make 6x a day. I take it maybe 1x to 3x a day if I need it. I make a months supply last almost 2 months. SO how the H*** is that excessive use. That is what I want to know. I am SO SO fricken mad right now I can not stop shaking. Comment#4 when I first saw him he had validated some stuff and said my Gastro Paresis was caused by my ANS. Whew that was SO nice to be validated. SO he told me to tell him every thing. SO I typed all my symptoms up and the gave the list it to him on the next visit. These are and were all symptoms I have had for a long time. Well he then says : She complains of chronic fatigue now and also complains now of difficulty in swallowing. WHAT!? I never said it just happened NOW. I told him it has been that way for a long time. He is making it sound like all of a sudden now i have all these other symptoms. I can prove to him it goes back as far as 7 years. I have records 7 years back that state some of the symptoms i am talking about. I even seen and ENT for the swallowing and they could NOT figure it out. Comment #5 Then he states There has been concerns about an eating disorder. OMG I told him i was a bulimia along time ago. And that I chose to quit because it was NOT worth killing my self over. GEESH that was along time ago. And the tests results do show delayed gastric emptying. SO WHAT the **** There is MORE!! I will NOT go there I am just SO SO angry. I thought I found a Gastro that was my saviour. But now I see they can act one way and then right some thing else down. I am not sure what to do about him now. I am in the process of writing him a letter. If I am going to continue seeing him there are things that need to be clarified and changed in my records. He needs to here me and understand. Thanks for being here and allowin gme to RANT!! Corina (hopeful-girl)

Best wishes Hayly and I hope you get what you need and compassion by the Doc too ;-). Corina (hopeful-girl)

Hi Sophia. Ya I know it is a terrrible addiciton and he knows its an addiction to. I think what I hate the most is every time I leave the house and am gone for a few hours I know what he is doing and when I get home I am a cranky B***** with him. And he wonder why LOL DUH See I am one of these different woman. I am not conservative or against porn. I beleive any thing is healthy with in reason. Ah here I am bearing my soul and some people may be grudge me just because I am a woman not against porn. But oh well that is me. I just don't like that fact that in the beginning. He lied to me all the time and did for many years and we have fought many battles over it. I had never been on a PC before Mike. And we have been together almost 8 years. SO he did not initiate me to internet porn in a positive way if that makes sence. He had to be sneaky and devious like he was doing some thing bad. That is not a positive experience. If he would of said hey hon would you be interested in sharing this with me. Hmm well i would of be open minded enough to check it out. And if it was not for me well then it's not. But to be obsessive about it is a bit over board and is very damaging to the relationship Actually two weekend ago I went to San Fran. My councelor suggested i just ask him one NOT to at all while I am gone and see what he says. And if I come home and he has then tell him what the consequences will be. SO I left and I cam home and well YEP he surfed for hours. I did NOT yell. He came home and asked how my day was and weekend was and I told him and then I told him that he PROVED to me this weekend he had NO respect for me and that caused allot of anger and frustration with me and I that I told him what the consequences were and I went about my own stuff. He sat in the office for 3 hours doing nothing but thinking. I came back into my office and he said he wanted to talk. He looked at me and told me He does NOT want to loose me! I told him then this needs to be a big issue we work threw in counceling beccause I just lost my respect for you. We are seeking couples counceling . There are SO many reasons I stay with this man. He is not a drunk or drug addict, he does not abuse me or my kids. He is there for us. Even though I am sick he deals with it and never puts me down. So there are allot of positives that make it worth while to try to work things out in counceling. And I really HOPE we do. It woul dbe worth it. But if not I am also at the age it is time to move on ;-). OH Sorry so long. I tend to do that LOL Cheers every one and i hope every one has a decent day and has strenght to get threw it. I am thinking about all of you.

Hi Emily and thank you for chatting with me. Ijsut went and got mine. It is a 2.5 does andit is in a liquid gel cap. Ok well since it is a low dose. maybe I will give it a shot when my husband is home. He works such long hours. I really hate trying a med by myself just incase ya know *giggle* I need to just quit procrastinating and just try it. I really do need some thing that helps with my dibilitating nausea. I a mean my nausea is so bad if we go on long car rides I have to take a bucket. There have been many times i have had to pull over to the side of the road and thorw up which is quite embarrassing. So if this would work thatn it owuld be OH so worth it. Thaks for your responce. I do hope it works for you too!

I am sitting on some marinol right now. I have had it for 3 weeks and have not gotten the guts up enough to take it yet . My doctor gave it to me for nausea since nothing else has worked for me. I did experiment with marijuana a couple months back and I did NOT like the way it made me feel. Made my heart race really bad and my heart was also pounding so hard you could see my chest move. I had two hours of H**** but then after that it did cut the nausea. But it was not worth it. SO my husband asked my GI Doc what he felt about marijuana used for medicinal purposes so he prescribed me the marinol. I am just afraid to take it since it still has thc in it and I don't want to have a bad reaction. That scares me. So when you do take yours please report back if you would. I would love to hear how you did with it. Corina (hopeful-girl)

Dancing light that is great you brought that up. I know between puking and just plain feeling crappy I too get that OH I don't feel SO pretty and SEXY feeling. I losse all confidence. That is where my husband doesn't make it any better. It does not help it when I here him say oh so and so is HOT and I get I am cute or pretty. Hey the man has to put me on the pedastal first and make me feel I am hot to him and number one. Then I don't care if he says any one else is hot. But that is just me. My husband has an internet porn addiction which has really hurt us. So being sick and dealing with that makes me feel really NOT ever good enough. I can not compete with all these beautiful woman out there. And I do not want to. I was an exotic dancer for years and know what it is like to be around SO many beautiful woman. But I did learn that the woman that are the most beautiful are the ones that make their personality shine. I knew this one gal. She was a little chunky and she had a big booty which to me fit her well ;-). She used to put her self down all the time. But I tell ya she was an awesome persona witha stunning personality that made her gorgeous (SP?) and mad her better looking than any barbie doll type!! I really know I am not ugly and I am pretty I think ;-0. But I sure do not feel it any more. My face has changed since I Have been really sick. I notice my eyes are more sunk in and I get darker circles under my eyes and I have very strained facial expressions, especially when I am really not feeling well. For me on my really bad days. I make my self get up and get my make-up on and do my hair and dress nice. It is really hard for me to do this but I do it for me and no one else. It does not improve the way I feel physically. But it does help with the way I feel about my self and at least I do not look like death warmed over LOL even though I may feel like it *giggle* As I tell my daughter who is 14 with a low self esteem. It is what is on the inside and it is your personality that makes you beautiful. Let your personailty shine and so will you. well I should eat my words I speak LOL

To Carmen: I LOVE your statement at the end: And you know the way I look at is if I die making love with my husband at least I will die with a smile. Okay, TMI. But... back to the original point- where there is a will there is a way you just have to be a little more creative. Go hug your honies! WOO-HOO and RIGHT ON!! Hey what better way to go LOL My husband and I just talked about this post and we had a great conversation. I even learned some thing from him. He does not like to aproach me on sex because heknows I do not feel well and he does not like to make me feel any sicker so it makes him feel guilty and bad. AWWWW I did not know that! I told him look I am sick any ways so why not do things that give me pleasure even if the outcome is not always the greatest becasue see in the long run it keeps me so I feel like I have not lost every thing I enjoy and it helps keep me out of depression and feeling like I want to just give up. Mwaaaaa to all of you! Corina (hopeful-girl)

Hello Moragan. I am fairly new here and i just wanted to say Hi and I am SO happy you have a great councelor. I have learned that it make sa huge diefference when you have some one who has faith and believes in you. You are in my thoughts and prayers. Corina (hopeful-girl)

1. Name: Corina Botkin 2. Age: 39 creeping up on the big 40 ;-) 3. Dx: POTS Autonomic Neuropathy, Vetiblular disorder, Gastro Paresis, and now maybe Fibromyalgia 4. Age at dx: 35 5. Where you live: Portland, oregon 6. Symptoms at worst: WOW So many LOL Bad gray outs and some times fall down, wired and shakey feeling, anxiousness, chest pain, shortness of breath and feeling just winded, sharp pain in my stomach and in my chest, inability to concentrate, strares/trances they only last seconds but scarey, freezing or to hot, body pain and ache, freezing hands and feet, dimming vision, Hard time remebering words etc 7. Symptoms at best: I am really not sure. All the symptoms but not as intence. 8. Medications/treatments, etc. that didn't work for you: Zelnorm, nexium, domperidome, Reglan, beta blockers, compazine, phenergan, oxycontin, inhalers, oh and ther is so much more LOL I had bad reactions to all of these and more. 9. Medications/treatments, etc., that do work for you: 1mg xanax up to 3x a day. But normaly limit it to 1 to 2x a day. Prilosec, Zantac, e-mycn, and I have been given florinef. I have just not got the guts up enough to try it yet. I also have been placed on Amitriptyline and have not tried that yet. That is to help with chronic pain and sleep.

Hello Sarha your in the right place full of wonderful people that have so much knowledge to share. So I am sure you will get lots of good info. I wish I could lend you information on those meds. But i have not been on those yet. I have been to chicked to take them as of yet. But hope to get the courage up enough to try here soon. Corina (hopeful-girl)

I agree awesome post. And WOW you got it right Morgan. I used this term before. I'd rather be alone and loney than with some one and loney. That is just WAY more miserable ;-). Melly don't let him bring you down. You have to be strong for you. In the end ythe person you always have to live with is your self. I know no matter how much we would love to get away from our selves we never can. Don't let him over whelm you. You are a beautiful person and deserve the best ;-) My husband and I have other problems we are working on. But when it comes to sex. I am the one who always had the stronger sex drive. And the sad thing is. I still have a strong sex drive and I yearn for it. But I abstain (SP) from it because for me I get to sick feeling either during or after. Ya during my heart rate gets up and I have to concentrate on just relaxing. But it is afterwards that knocks me on my but and I always end up puking. I straight out told him about 3 months ago. That we had to change our sex pattern if we were going to have any. There can be NO more wam bam thank you mam quickies. That is to much for me. So we have been experimenting. What we are trying to do is concentrate on very mellow relaxing 4play. Candles, massage and very light 4play. Just really tyring to keep it at a very mellow level. It really does work. But I do not always climax and I still end up throwing up afterwards. But for me it is worth it ;-). I look at it this way. If we take it easy and make it like Kama sutra fun and relaxing it is totally worth the couple hours down time. Because it makes me feel closer to my husband and I do not want to loose that bond. How ever I am also lucky he handles all this really well. It is tough on him at times because I can be mean and cranky and have my moments. Buthey so can he. And the most important thing is communication. That is what we are working on threw counceling.

OMG I totally relate. I refer my head pain and hair pain like this. Like i had a pony tail in that was way totight and it made my scalp very tender and painful to touch or run my fingers threw my hair. For me that is how i describe it. And yes I also get that feeling with my bones. I also get the feeling my bones are sharp and are painful to my skin. I am SO sorry you are feeling terrble. I wish i could make it go awya for all of us. Like there was some magical power we coul dperformand we woul all be healed ;-). I can dream LOL I have read on here that this type of pain could be fibromyalgia (SP) I am my self am going to talk to the Docotor about this. Do not feel stupide talking to any one here. Your symptoms are real and it can be quite frustrating. So don't live in your head. As friend told me once. The only stupid question is the one not asked ;-). I have done that for way to long and I am just coming out of my shell. Form me when things are that bad I take oxycodone as needed. Every day I feel that pain and it is awful. SO I hope you feel better and it is ok to break and cry. I have many times my self lately. I know it isnto easy but I wlays try to take soothing bath with epson salt and drink a hot cup of green tea. It doe snot take ht epain away but it is relaxing and helps me deal with it. Maybe that migh thelp with you. Take care Corina (hopeful-girl)

Hi Great post. I to have also been recently diagnosed with meneires disease. But now they may change that diagnosis. I am going threw a serious of testing in 3 weeks. it will be an 8 hour day here and I am not sure the exact tests they will be performing. But I will keep ya posted. I get terrible vertigo and some times I bounce off the walls LOL My husband and I were in the store the other day and I kept walking into things my balance was way off. He thought it was kinda funny. He says some times it looks like i am drunk LOL I wish then all I would have to do is quit drinking *giggle* Then I get the loud defaening rining in the ears and the fullness. I have had in the last year 3 hearing tests and they were all different. One was perfect and the other I was border line for a hearing aid and then my third was in between. My ears are very painful especially to cold and excersize. So I hope to find out exactly what my vestibular disorders are. Whew nothing like haveing a myriad of several disorders. Which I see many of us have. I hope you fell better very soon and your symptoms pass quickly!! Corina (hope-ful girl)

I have gastro paresis and it is very severe right now. I am on a feeding to called the je-junostomy tube and the bad thing is my body wants to reject the tube. My body hates the feeding. I take all my water threw the tube. And for the canned food I can only take about a can a day and have to way water it down. My intestines hate this. It tends to reflux back up into my stomach and make me even more ill. The Doctors think it is just a foreign object tin my body and my body is saying get this thing out of here! So I take SO many supplements to help keep my nutrition some what stable. I have NOT found anything that seems to help with my nausea. High dose of Zofran helps but only for a like two hours and I cannot afford it. Does anyone have any suggestions of what worked for you. I have taken zofran, kytril, compazine, and phenegran. No of those really worked for me. The only things I can eat are like some nf yogurts such as lime, vanilla, and lemon flavors. I can not eat any of the fruity ones. I can eat english muffins and white bread and some gen soy chips. That is it. And even then I still some times end up throwing up 2 to 4 hours later and I fight NOT throwing up allot. I get so tired of eatingthe same damnthing every day. I allow my self small binges just to keep my sanity. Such as a little ice cream or some tomatoe soup etc. Things that I know will come up easy and not hurt me so much. I know it will come back up but I do not know how to just totally quite eating. It drivesme crazy!! If I did not have an appetite than it would be easy for me to just give up food. But in my case I still have an appetite! So for you and others that have Gasto paresis how do you deal with this? I would love to hear from others who deal with Gastro Paresis and what you have gone threw. I have not really talked to any one else and I would love to know how others deal with it and maybe that might give me some new insight ;-). I am glad you are feeling better. That has got to be a wonderful feeling to have some relief.

I have to agree with you a little bit. I am over anxious about medicine now. BUT onlybecause of my bad experiences. When I was young I had braces for 5 years. I never had a problem with dentist or the or the shots. Well about 8 years ago I started going to the dentist again. Every time the dentist would give me a shot I would get really cold and clamy, shakey, jittery, my heart would start racing, my blood pressure would do I am not sure what but I felt like I was going to die. All the Dentist kept saying I had anxiety which made NO sence to me. I had absolutely NO fear of a dentist. So one day I went to this specialist and she gave me a shot and I had a very bad spell. She then told me it was NOT anxiety but that it was a reaction to the epinephrine. SO the next time I went in she gave me carbocain plain 3% with out epi and guess what. I was a bit anxious but that was just me. I was fine. My old cardio tried me on propanalol and with in an hour I was coughing, I could not breath, I felt like I had a rubberband around my chest. I could not even hardly cough or move without my HR sky rocketing. I was pale white as a ghost, I was cold and hot, shakey, anxious, could not get comfortable, just seriously felt lioke I was going to die. When I do have a reaction to a meds it will put me into a serious POTS attack if I look at it. If I have a bad reaction I have pretty much the same symptoms to the meds if my body does not like it. Some times the symptoms vary a bit. OH heck I am taking this one med and one day I am fine with it and the next not so fine. Get that one LOL Ya know I am thinking about having my doctor test me for fibromalygia (SP) Is there any tests I should ask for specifically. That would make since about my body pain. See my stomach pain I have all the time my gastro says is out of proportion with my gastro paresis. Though it could be because of the Neuropathy or POTS! I am still in some what of the mystery phase. NON of my doctors I see here really NO any thing about ANS, POTS etc. BUT they are all great and are working with me and learning with me and our understanding. Before i did not even have that. The only one I hate is the neuro. I am in the US I just have troubles with insomnia. Yah I could of taken a xnanx to help me sleep. But as I commented I don't want to become super dependant on it. As for doing things. I can not hardly sit still ;-). But I do have to watch it because I always over do it. I have not learned where my middle is yet. I do aerobics and weights off and on. I do it on my OK days. But I have to have a bathroom near by. I always throw up either during or after or both LOL But hey as I told my surgeoun better to work and and stay strong and be down than do nothing and be down ;-) I am a fighter but I just got pushed to my limit this year with all this and allot of personal issues with my family that I have been breaking and I am in a place emotionally I do not want to be. And that is on the PITTY POTTY so to speak LOL Such as Why me and I can't do this anymore and I hate being this way and on and on. You get it!1 SO I decided it was time I try to come out of my shell and reach out and that is a hard one for me. OK there I go. I am off and rambling. It is great to be here and i look forward to chatting and getting to know everyone and I hope I will be able to give some thing back!! Cheers Corina (hopeful-girl)

Hi Jaimie. I deal with chronic pain and have been having what I call breakdowns and shut downs lately. 3 months ago I just found me the most magnifecent councelor (as I like to call them) and it is helping. I have my daughter seeing a councelor, my son and my husband and I are doing couple counceling. I am hoping that this will help us all learn to really deal with our situation at hand. Because it does affect us as a whole! So we are all working together and now that I have found this forum here with SO many others who share allot of the same things I feel like I have a support group at home now ;-)

Hello. Well IMO mine stemmed from an over dose from cocain May 1986. I started having symptoms after that. Prior to that I never had any problems. 6 months after that I remeber getting sick and I was told I had a heart mur mur. I was never told that before either! My symptoms were very epasodic for years. It gradually got worse threw the years and every doctor I seen kept telling me oh you have anxiety or depression or it is just in your head!! Well I tried 5 different anti depressants threw the years and all of them with in an hour of consumption put me in the ER with a heart rate above 200 and blood pressure low. So no AD's for me! For so long before things got really bad and being diagnosed I would make comments to the doctors like I feel like my nervous system is hey wire and they all would look at me and say NO but I think your head is (giggle) Well they may not of always said that but ya can tell when they think that or hint to that!! I would like to face them now and see what they have to say LOL But before then I never had any problems. I have been drug free since then too. Almost loosing my life to drugs was NOT the way I was going to keep going ;-).

Hello Hawaii girl. I hope yougot my e-mail. Funny thing is I just found this board tonight LOL Some how a while back ago some one entered my e-mail addy in something. That is how i got signed up for the e-mail list. And then by chance some one posted to the NRDF board and then their was this link to this forum and walla here I am LOL It was nice getting your e-mail. TTFN Corina (hopeful-girl)

Hi. Well I have been over at the NRDF forum as a lurker for some time. I have just been trying to come out of my shell and join up with conversations and sharing and trying not to live in my head all alone ;-). I just discovered this forum. Some how was missing this. Now I feel I have more of an extended home woo-hoo!! Hmm a brief description of me. I have POTS, Autonmic neuropathy, vestibular disorders, Gastro paresis, and I am on a je-junostomy feeding tube right now and have been since June. I throw up every day! I have all the main POTS symptoms and have a very SERIOUS problem taking medicine. I am highly sensitive which has really complicated things for me and trying to get better. I take xanax for my wiredness, anxiousness and shakiness. I get so wired i feel like i am on a bad speed trip WHEW I hate it!! I tell ya the xanax has done wonders for me. I try to be very cautious about taking it. Like today I have only taken 1mg 1x. But hey I think I rather be a little addicted than experince what I feel. I take oxycodone when needed for pain! Stomach and body. Does any one else here get the feeling that there bones hurt and feel like they are cutting threw your skin. EWWW I hate that feeling. I am very sensitive to pain. My Doctor says it is the Autonomic neuropathy part for that. I am also on prilosec 2x day. My new neurologist who is a cold jerk has prescribed me Florinef. I have been sitting on it for a month. I am SO scared to take it. I have been hospitalised over so many bad reactions to meds and each bad reaction I have affects my heart and blood pressuer and i feel like I am going to die. SO one of my biggest fears is medicine!! OK so that is my story. I do have a tendancy to ramble and I do not mean too!! That part just Oh hey I see there is another Corina here. Hi. You spell your name just the exact way I do ;-). Night Corina (hopeful-girl)