Maybe I am crazy after all-------can't take it

[Guest Julia59]

Here I sit---i'm ready to call a rescue crisis center. Dr. Davis- (a psychologist I saw a few times when times got rough) can't be reached tonight. I have never been so sad.

I feel like a fool----and that all my confidence is drained out of me.

I really need some words of wisdom here---as tonight is rough---really rough.

I speak deep from me heart, as I truly feel like giving up. I am too afraid to go to ER to tell them I feel like i'm having a breakdown.

I just received an e-mail from Dr. Bolognese secretary Regina letting me know that Dr. Bolognese is pleased with my films. This is good now----providing I wasn't having all the problems i'm having right now. I'm beginning to think all of this is in my head as Dr. Bolognese is one of the few NSGs that looked outside the box.

My main fear is the instability---that I actually feel in the upper neck and cranial area.

Last year in July I had been diagnosed with several things wrong, including a confirmation of what Dr. Heffez in Chicago diagnosed----here we go again----The chiari with minamal herniation, congenital cervical spine stenosis----(Dr Heffez)

Confirmation of the chiari and the stenosis, retroflex odontoid, cranial/cervical instability, partially blocked CSF flow, and EDS per Dr. Bolognese. I have communicated to Dr. Bolognese over a period of the last several months. In one of the e-mails he was concerned about pressure on the brain stem and told me to start thinking about surgery.

6 months later---i'm told he is pleased with the last set of MRI's.

Please don't get me wrong----I don't not WANT surgery, I just want to know if I am OK-----were dealing with the area around the brain stem. I would not make all this fuss if I hadn't been told by two NSG's about all of the above issues.

I'm assuming i'm seeing experts-------at least they know more then I know about all of this.

I just got a two line response about my MRI's after waiting three weeks saying "he was pleased with the MRI's"----no phone call explaining why. Has all of this gone away now?

This response was right after I posted the long post on the neurologist saying I was misdiagnosed----and based on the way I feel, and Dr. Heffez's diagnosis, and Dr. Bolognese's diagnosis I was pretty confident this doc was wrong.

I just wrote a four page letter to The Medical University of Ohio regarding the abusiveness of this neurologist who was telling my how The Chiari Institute was a "money making enterprize". Even if I am misdiagnosed, the neurologist is still wrong for the way he treated me. Suddenly the diagnosis from TCI is "Dr. Bolognese is pleased with your films"----and also to have non-invasive cervical traction done.

I already HAD the traction done, and I e-mailed Dr. Bolognese and told him it made me feel worse after the traction. I only felt good while IN the traction---but a short time later I only felt more unstable. He even told me to wear my hard collar in the car at all times because of the instability.

I guess I just don't understand why the he didn't call me and explain why he is pleased with my films after being told so much was wrong before.

Have I made a fool of myself on this website---getting support for something that doesn't exist? If all of this is manifested in my mind like that neurologist said----I am one sick puppy---and I am truly sorry for waisting all of your time reading all my posts of my difficult times with this mess---that really doesn't exist.

I know how weird I sound---but this is what is going though my mind---that this was all a trick----a dirty, dirty trick.

Julie :0(

[Poohbear]

Julie,

I am so sorry you are in such a deep, dark place right now. Please know there are a lot of people on this site who care about you regardless of if your diagnosis is correct or not!!

What matters right now is #1 you get through tonight, hour by hour if you have to. #2 Try to figure out what will help you feel better in this moment

Can you email this Dr's office back and tell them you are confused by this last email in light of your last discussion with them and you would like either another emailing explaining more or a phone call? Is it possible his comments mean that the condition hasn't declined much from the last time he spoke with you? (Which is different than saying it doesn't exist)

I don't know you so I don't know what's most helpful to you.

Would you feel better/ or are you able to give yourself a break from thinking about this until tomorrow? Maybe you could have a "take care of ME night"...take a bath, paint your nails, listen to some comforting music, pick up a fun book to read...anything that feels rejuvenating to you.

I know sometimes it's hard to get your mind off things but ask yourself what will make you feel better in the moment that will help get you through the night.

We are here for you!! :

[DancingLight]

julie,

i was just logging off when i saw your post...

i need to lie down now...but i am COMPELLED to answer at least briefly NOW!

no, no, no you have never wasted our time. never. never. never.

i cannot see how you could have 'created' this all in your head...i just can't.

i don't know quite what else to say right now...but maybe after i lie down for a bit, some more blood will come to my head and i will be able to think better.

please, please, hold on. if you are in this much of a crisis...that you desparately need to talk to your psychologist or go to the ER...i am very, very worried about you. will you harm yourself? is your husband there? can you cuddle with india for a little while? do you have someone you can call?

please keep us updated, and if nothing else, keep posting here to let us know you are there...

i will not say 'i understand' b/c i have not walked in your shoes. but, i will say that i have had moments of desperation that are so unimaginable. i have called my therapist in crisis! after surgery, i cried and cried and said 'no one should have to suffer like this. i don't want to live like this.' and, although i did not really want to die, i wanted someone to please, please take the pain away for a while. this is something i am not sure i have ever shared here. but, i felt that somehow, somehow it might help you to know that chronic illness can definitely make life tough!

i have a book on chronic illness that i love so much, b/c the woman talks about how sometimes you do think you cannot take it anymore. she made me see that when you are very ill, it is almost normal to have suicidal thoughts and to feel so much despair.

i don't know if i am making one bit of sense. i'm probably freaking everyone out here by being so honest about this stuff. that isn't at all my intention. but sometimes more than anything it helps knowing you are not completely alone...

like ernie, mourning her sister and picturing us all there with her. or me, during surgery and after...i would just hold images of all of you and your words in my mind. it was amazing the power it had.

okay, lying down now...no such thing as brevity for me...oh well!

please check back in tonight if you can...

emily

[janineerrn]

Julie,

You are not crazy. The chiari herniation is constantly changing and can be different with each mri. Sometimes normal, sometimes ectopic. This is true for everyone. Some people just have it to a degree where they are symptomatic. I work in a hospital with a doctor that treats chiari malformations and know quite a bit about it. Ive taken care of patiens in ICU post op after brain surgery to fix bad malformations.

As your cerebellar tonsils move (which is a chiari malformation) you could be symptomatic and feeling bad, when they move back to a normal place you may feel good.

The cervical stenosis is not related to chiari.

I hope you feel better.

Janine

[tammyokc]

Julia, regardless what your diagonosis is, we are all in this together. We all have the same problem...health issues! They are all awful, they make our lives feel full of non-functioning, limited, worthless people at times and we are not that!!! We may have limitations, we may not function like "normal" people, and we are certainly not worthless.

I too am so sick of POTS or whatever we all have. Who cares what we have, we feel sick and crazy at times and on the brink of no where's ville. It's so easy to just want to give up...

But Julia, you hang in there. You look around at those that love you and need you and can't live life without you. This is a set back. It seems most of us get those more than going forward. Try and just get through each minute okay. I know it seems impossible. You are not crazy! Going to the ER just makes you more depressed cause they don't know what to do either, try not to give into the utter dispair of feelings you are having.

I'm sending up many prayers for you right now, so hang on, we all love and care for you!!!!!

[MightyMouse]

Julie, please take a deep breath and try to center yourself. I hope you wont let any doctor have the power to make you feel so small. They are but human and there are still so very many conditions that they don't understand... so they tell you it must not be happening... or there is nothing wrong... or you're crazy.

"We must accept finite disappointment, but we must never lose infinite hope." --Martin Luther King, Jr

Slow down, and think this through. Put in a call and ask for an explanation from your doctor about what exactly "looked good", and be sure to clarify to him that despite the MRI "looking good" that you're experiencing symptoms.

Nina

[sally]

Hi Julie,

Just a suggestion but maybe what Dr. Bolognese meant was that he was pleased that you are not required to have any immediate surgery at this time, that's what I got from his statement, not that he meant you don't have a problem at all. I would just keep trying to reach his office to clarify his statement but would try not to take it to heart that he meant that you don't have the problem.. He's probably thinking of the immediate danger and was please to see your films haven't changed from the last one or something.

The instability you feel can also be a result of the EDS as well to make matters worse things usually will show as somewhat normal at times on films. Even when EDSers are having the worst pain ever with a particular joint or spine or rib area (whatever is being effected at that time) xrays/mri/ may not show any abnormality what so ever. Although, this is frustrating, this doesn't reflect any thing imagined on the patients end, it's just the nature of the beast so to speak. Try not to let it get you down, I realize that when physicians question and doubt everything we say or feel it tends to make a person self doubt and feel like we are imagining the illness but you are not....so don't self doubt.

EDS alone can affect so many different parts of the body in many ways that are different from even other EDSers, nothing is consistent. Plus you add in the problems of the other illnesses that play havoc on the body or complicated by the other problems and boy, it's no wonder the body doesn't know how to react or feel on any given day.

You have an ever changing chronic health issue that is not imagined so don't let people or statements make you feel badly, having these type health issues can be very frustrating but also give yourself a lot of credit for getting up in the mornings and taking on the day!!!! I always remind myself that what we all deal with on a daily basis would make even the strongest person run for the hills screaming and most people could not handle what we must endure in a day just to function. So give yourself a pat on the back for your courage and inner strength.

I hope you feel better soon and I haven't forgotten to email you the information, I will get it out to you shortly, I'm waiting for some quiet time to arrive on my end....scheduling etc.

You have a good day and feel better soon

[Radha]

emily could you please give the name of the chronic illness book you mentioned? i am always looking for good books to help pull us thru the hopelessness and frustration,thanks, and you are right, depression and even having suicidal thoughts are unavoidable when you are so sick and for so long,

radha

[calypso]

Julie,

I just had an appt. the other day with my psychiatrist, who is one of just two of my docs who actually believes I have a physical disorder that hasn't yet been discovered or that at least hasn't been named yet. She reminded me many diseases weren't even diagnosable 10-20 years ago, yet today western medicine has made the strides necessary to treat or control these diseases, such as autoimmune diseases and even basic coronary heart disease. Diabetes patients lived 10 years less on the average than they do nowadays. Just because your neuros aren't exactly sure what's going on doesn't mean that something isn't going on.

And please try to remember that there's no such thing as "all in your head." Your head is a physical part of your body, and it will remember you saying that. All that does is reinforce the idea that you are mentally ill, and we know that's not the case. Your head is just trying to tell you that something is not right in your body, and although it may not be life-threatening, it doesn't feel good and your body is looking for your help to get it back on track. Many, many days go by when my doctors shake their heads at me, call me a medical marvel and tell me there's no rational explanation for my weight loss, shortness of breath, tachycardia, swelling, etc., etc. I have just learned to accept that I might not find out what's wrong with me, but I do know that something is wrong and I AM NOT CRAZY. Both my mind and body are out of whack, and I will continue to work on getting myself better until I do, or until I die doing so.

From what I know of you on this forum, you need to give yourself more credit. You are intelligent, thoughtful, kind and normally quite confident. I want you to get feisty like you usually do and call that neuro, ask why your MRIs suddenly look good and why the change of heart. Then do what you think is the next right step.

Amy

[steph37822]

oops

[Miriam Poorman-Knox]

Julie, Thats what we are here for!!!1!\\

If you feel that you need to speak with someone tonight, why not. It certainly is not a failure. We need to know when to cry uncle and let someone else figure this out with us. You are not crazy unless I am too. I see a therapist almost every week, and he empowers me to focus on the most important next step and not to get lost in pots mental pause. You offer so much, please dont deprive us of that. We all learn from each other. Take care

Biggggggg Huggggg1!!! Miriam

[corina]

Julie,

I didn?t read everything but I think I have nothing more to add. Just then telling you you?re an intelligent person and getting the, different, results of different doctors would drive everybody nuts. And, although I know exactly how you feel, Nina is right, I wish doctors wouldn?t make you feel so small. Now that you feel the way you feel, you take the time for this. There?s nothing wrong with realizing how bad this situation feels for you at this moment, BUT after that you have to try to get yourself together and call this doctor you saw before, I think his name was David, and ask him to help you figure this out.

I don?t think you can do this on your own, there?s just too much right now. I?m wishing you better days to come Julie, but don?t forget we?re here for you, no matter what diagnoses you have.

It always helps me looking outside the window and see the sun shine, at least that gives me a smile! I?m thinking of you!!!

Corina

[ariella]

hi Julie,

the others were all eloquent, just writing in to give you an "e-hug"

the docs in THE major medical center in my city were about to pronounce me crazy, my POTS doc came to the rescue at the last moment with a letter explaining what I have. These are considered some of the top neuro's in my area, and I could tell the head of the dep't at the meeting was having a real hard time biting dirt that someone else knew something he didn't. To the point that when one of the other doctors at that meeting did a standard neuro exam at the meeting and a SIGN, not a symptom , showed strange, he pronounced it psychological (in a whisper, as if I'm deaf too)

I find that sometimes just venting lts me pick myself off my tush and get fresh perspective. I hope you're in a much better headspace by now.

Lots of love,

Ariella

[Guest Julia59]

I just wanted to let everyone know how much I appreciate you for everything you did and said to make me feel better. It truly helps me get through this mess i'm in.

All your words of encouragement-------well, all I can say is it brought me some hope.

I'm so sick right now with a sinus infection---and now blood is in my---well you know--------a-----drainage...........

I'm on the zythromax-----but the med makes me feel even sicker.

As I said earlier---mastoiditis was mentioned on my MRI and no one has taken that seriously. I have so much trouble and pain around those mastoid bones---I just think a closer look needs to be taken.

Still---i'm very discouraged and don't want to call the doc as the staff always seems amused with my on going ailments.

My aunt who is a nurse told me that z-pack is given to patients with viruses to placate them---and that z-pack is not enough to clear up a sinus infection. She said one needs to be on antibiotics for 21 days.

I just think that mentally i'm at the end of the rope. I keep fighting the fight but my efforts seem to be for nothing. I don't know if I have a cartoon looking face or what---but when the docs see me they can't take anything serously. This is not the way every doctor has been. But the one's that are that way say the Docs who DO take me seriously must be nuts also.

I think you all get the picture----i'm feel like i'm finally going to make these Docs right-------------because I feel like i'm going nuts. I'm hanging on a string----but i'm still hanging. Also, keep in mind, i'm always more of a mess when hit with an infection outside of my POTS----i'm a big sissy when it comes to taking antibiotics, as this is when the whole mess started--AFTER TAKING ANTIBIOTICS.

I don't know if they have anything to do with it because when they gave me the antibiotics in my IV bag after surgery it didn't seem to bother me----so maybe it's just mental.

I don't know---it just seems like eveything is crashing down on me at once. i don't know where to start to pick up the pieces.

I'll try with the Doc in NY first.

Thanks again for all your support. I wanted to write each of you personally---but

I feel so bad today. I over did it yesterday---but it was for a good cause. My husband and I have been promising my nephews and niece for a long time we would take them swimming at my parents house and to be with my nephew David who is also their age.. I don't think my husband felt well yesterday eaither---but he loves kids so much and he couldn't let them down (My husband ron is on vacation this week). We were both very careful not to get them sick also.

They are 4,5, 6 and 7 years old. The four year old is his niece who we promised to get together with my brothers girlfriends daughter----because both girls never have any other girs to play with---too many boys. I was already on antibiotics, but I still washed my hands a thousand times yesterday to avoid getting those kids sick. I was miserable and very sad that I couldn't go outside to watch them have fun, and also sad I couldn't enjoy this week of vacation with my husband.

The kids were so cute----oh, it just made me so depressed I couldn't enjoy them more. I wanted to talk to my sister in law and my brothers girlfriend too---they are both so nice---but again the heat----ugggg, it's just crippling for me. all I could do was stay inside the house.

My mother felt so bad for me she went into their bedroom and brought me out a nice shiney gold necklace, and said "here you want this", "I don't wear it anymore". That's what she does sometimes---out of the blue, just hands over some of her jewelery. I put it on---and it looked very nice---and hopefully it took away from my drab looks yesterday.

I guess i'm just mad and sad all at the same time----and all of this doctor stuff has got me unraveled.

I'm starting to ramble----so I sould let you all go for now---but I will let you know if I find out any more news form Dr. Bolognese as to why he is PLEASED with my films.

Julie :0)

[Miriam Poorman-Knox]

Julie, I must respectfully disagree with your relative. Zithromax is a potent antibiotic and there are varying doses and days. It is expensive. But even for me this has worked. Hugs....Miriam

[Guest Julia59]

Miriam,

Thanks for the information---i'm not too worried about it. It's just her opinion.

I would check things out before taking one persons word. I'm glad it worked well for you--unfortunately it is TOO strong for me and I can't take it anymore. I put a call into Dr. Grubb's office letting them know that it's making my POTS symptoms worse. It makes me tachy----anxious-----and sick to my stomach, and I just feel weaker.

The first night was really rough on it---then the next-(lastnight)--not as bad, but today I feel a lot weaker----so i'm not going to take it. But i'm also not going to ignore my sinus infection either----if that is in fact what I have----the doc just called in a prescription without seeing me. I told the nurse my mucas was green and blood streaked---and she kind of laughed at me.

I told them I was real sensitive to antibiotics and---the next thing I know zythromax is called in---after I asked them to check with Dr. Grubbs office first to see if they could reccommend something with less side affects on POTS patients. They never called his office.

I'm just having one heck of a time here----and really having trouble climbing out of this mess.

Julie :0)

[morgan617]

Zithromax is a good antibiotic and stays in your system for ten days after the last dose, I just get a double pack for sinus and that covers 3 weeks of treatment. Also afrin for 3 days then nasonex for 3, alternating because afrin should never be taken for more than 3 days. I've only had a few sinus infections, but this always clears them up. But you should make sure that's what it is. Antibiotics are way over prescribed and now people are becoming resistant to them. My doc won't give them to me without an x ray or a quick cat scan to make sure I don't just have a virus. I have no problem with that. I have so few upper respiratory problems, it's not a problem for me that they want to make sure. morgan

[DancingLight]

julie,

thank you for continuing to check in with us and update us. i am not sure i have any additional words of wisdom right now...sorry...

morgan! we are two ships passing in the night these days...i feel like we are never on the same posts anymore...so i saw you pop up here and had to say 'howdy'...i owe ya one about your ER update!

RADHA...here is the name of the chronic illness book that i liked. i read it a long time ago and haven't read it again, but it stuck with me and at the time, it was precisely what i needed. it spoke to me at the time...i do not know if it will to you or would to me now, but when i read it it was perfect:

The Chronic Illness Experience: Embracing the Imperfect Life: Essential Support and inspiration for people with chronic illness, and those who love them.

By Cheri Register, published 1987 as Living With Chronic Illness: Days of Patience and Passion and then updated and published in 1999. It even mentions EDS in the intro!

Hope this helps...let me know if you check it out...i ordered it on amazon...

emily

[sally]

Hi Julie

have you ever tried levaquin? I had to end up taking this med for a terrible sinus infection once that other antibiotics did not clear up. Within a few days after starting levaquin I felt so much better and I experienced no side effects from it that I remember. I know sinusitis can be just awful. I came down with terrible ethmoiditis once that my nasal area swelled terribly even some in the eye area that I looked like I was punched in the nose. (I had let an infection go longer than I should have) I was put on Prednisone as well as about 45 days of antibiotics at that time and had to see the doc every few days for a check to see the progress. I knew better to let it go as I usually have chronic sinus problems but I just got tired of seeing the doc every time you turned around. It scared the pants off me that time though let me tell ya!!! I know antibiotics can sometimes disagree with your stomach, try to always take with food if it's allowed, plus just the infection alone can make you feel weak and shakey, at least for me, I notice these symptoms everytime I get one. Good luck and feel better soon.

[Guest Julia59]

Emily, you have such a good heart----and so do the rest of you for your never ending support. I'm not feeling as sorry for myself today----but still one very mixed up girl!

I wish I could give you all a rose right now to show my appreciation.

Sally, i'm not sure I have a sinus infection, my doctor just called the prescription in to the pharmacy----actually the nurse did---all he probably did was sign it.

I think they assume I do since the discharge is green and at times theres a little blood. It could be secondary to a virus---and could go away on it's own. I know I caught something as everyone around me was sick.

I read about sinus infections a little today, and sometimes the ones that come from a virus can to go away on their own. I have not had chronic sinus problems---and I hope I never do---I can only imagine how hard that is to deal with. I put in a call to Dr. Grubb's office anyway just to be safe----perhaps they will know of an antibiotic that would be less invasive to my POTS issues. I try not to bother them too much, but at some point i need to know what antibiotic will agree with me anyway----so if it takes them a while to get back to me---it's no big deal.

I'm watching myself closely for the warning signs to look out for when a sinus infection gets out of hand. I do feel some improvement---about 40%----so let's hope it continues without the drugs.

Thanks again,

Julie :0)

[Gena]

Julia,

I wish I could take all your pain and sickness away. I just wanted to let you know your in my thoughts.

If you continue taking an antibiotic, you may want to strongly consider taking acidophilus (probiotics) since the antibiotic will kill all of the good bacteria in your intestines, which can lead to diarrhea, yeast infections, etc. Just be sure to take it at least two or more hours before or after the antibiotic.

Do everything you can to encourage the natural healing process in your body to take place (eat a healthy diet (dairy and wheat products create more mucus), vitamins, aromatherapy (ecucalyptus and peppermint help open the nasal and bronchial passages,) etc.)

I hope you find good health and a doctor that takes you seriously very soon.

Remember that we're here for you!

Gena

[Guest Julia59]

I wanted to update you all. I did find out some news from Dr. Bolognese's office.

My films are not perfect---they just haven't changed much over the last year or so.

So the good news is that I don't need to rush to surgery---as nothing looked like it warrented surgery right away. Then I was to list a diary of what has happened over the last several months. they really pay attention to symptoms closely as subtle changes don't always show up on an MRI---and a lot of my issues are near the brain stem.

I still didn't hear from Dr. Bolognese---only my nurse---he is extremely busy just like Dr. Grubb---so as long as I have a better explaination I won't push the issue to talk with him personally unless some really intense issues pops up. i gave her the dairy---if they wish to contact me they can.

Unfortunately this won't help my SSDI case because I have nothing recent confirming my diagnosis.

Julie :0)

[Ernie]

Hi Julia,

That is great that you don't need surgery for the moment. Let's hope that you remain stable for a long time and even that you get better!

Thanks for keeping us posted.

Ernie

[Aprilmarie52]

julia, Im sorry that you are going through such a hard time right now. I am glad that you heard back from the drs office and that you dont need surgery. Sending hugs your way!

[Poohbear]

Julia,

Just checking in on you! How are you doing?

Are you feeling any better these past few days?

I hope you are feeling much better and have more energy