I'm so sorry---but I need help

[Guest Julia59]

I'm so sorry everyone---I sit here in despair---yet so many of you have it worse, and I feel bad whining about my issues.

I do believe at this point I truly have some emotional issues that feel like it's getting out of control. Most of it is because I feel my health is getting so out of control, and I feel too mentally exausted to try to sort this out medically with any of my DOCS---even doctor Grubb.

I've been plugging along even though my POTS symptoms have been getting worse, and this stupid---@#$%%^^&**^%$---neck/cranial ----#$%^&*^%----and so much confusion with TCI. Finally Doctor Bolognese figured out he had me mixed up with another patient, but all the you know what I went through during the mixups, it has put me over the edge---way over the edge.

Usually I can take just about anything---all the pain, fatigue, other neurological isses---ect. I have been having more irregular heart beats then usual---which scares me. But tonight was the real kicker-----I don't know what happened. If my heart just slowed way down sudddenly or if a vaccuum cleaner was trying to **** it out of me.

I was walking towards those horrible steps at my sons apartment with my husband to take his girlfriends daughter back along with a small bag of treats to cheer him up as he is sick----102 temp. Then ----BOOM-----out of nowhere----------------It felt like my heart weighed more then it should and it dropped down into my belly. I thought it would pass, but it didn't, so I dropped to my knees quickly, but carefully.

I had watched Kaela today because my son called me as he was sick with a high fever. His girlfriend was working early this morning, and she had to go cover his shift tonight----and litttle Kaela can't afford to get sick again as she just got over a ruptured ear drum from the last ear infection-----due to back to back viruses. Kaela only weighs about 18 pounds, but for me, I can barely lift her. My upper body strength is just about gone. I'm so unstable in the shoulders, neck, and where my neck and cranial area come together----I don't even believe it myself.

So needless to say, I really wiped myself out from watching her, but there was not a choice in the matter, as I was the only one who was available. Her mother was out of town---and it's the weekend----so no daycare. She is so adorable, and I just hate the fact that the enjoyment of a little 15 month old could wipe me out so bad. But let's face it----a 15 month old child is a lot of work----but still a joy to be around. I just wish I had the strength.

And this horrible neurologist that told me all this was in my head---------------- ----well let's just put it this way, it's not that I let him make me believe it-----I just find it unbelievable that he was that ignorant that not one piece of evidence in my file rang a bell. I was literally told I could jump up and down on a trampoline!-----UGGGGGG---then all the mix up at TCI----not knowing which test I had or didn't have. I'm so bad off now I get tireed after my shower in the morning, but still I plug along and try to be somewhat active putting around the house doing this and that, but now it's so hard. I feel like I have heart failure---that's how bad it is.

You know that part of your neck in the front where you adams apple is?---Well----now that's trying to dislocate, in fact it did ----I think, but went right back right away. I'm telling you----this is really true. I feel like i'm on a bad trip with some bad drugs-----this all can't be real. The things that are constant is the pain and fluish feeling all over-----and I feel soooooo weak.

I feel like i'm sucking all the energy out of my husband. All he does is work and come home to help me. I work real hard to try and get as much done as I can, but lately I have been so wiped out he's had to do more the usual----and he has to keep up the yard-----big yard---lots of bushes and trees.

Then I read about people on this site who have had some very unfair turns in thier life, and I wish I could make it go away for them. All this ANS business is just not fair----And I can't figure out why Dysautonomia is so ----well------dismissed-----by the medical community, family, friends, co-workers----society in general.

Now I go to see Dr. Heffez in Milwaukee. I don't know what else to do. I have to see someone who can help me. This instability with my neck/cranial area is getting scarey, and i'm tired of feeling like a big furniture clamp is on my spine and it won't let go----and the wind is knocked out of me. And to add insult to injury, I think i'm getting my husbans cold. when he gets colds, he gets it for about two days. I'm still not over the one I had in the beginning of June!

I am so scared. Tonight I couldn't get my breath when this happened. Then my belly blew way up, and one burp after the other. I sould have known I wouldn't get away with eating a meal tonight. I thought I was scott free as my belly felt OK----as it usually never does after a meal. It's just been worse lately. My belly was on my lap----that's how bad it blows up. One minute i'm a size 12----the next---i'm nine month's pregnant.

I have more lovely testing---the next one is gastric emtying as food get's stuck in my esophagus----and my bowels barely move anymore. I am so sorry to be so long winded---and whiney. I guess i'm truly feeling like I can't hang on mentally anymore. I just want to curl up with a 1000 biographies to read so I can imagine i'm in another life for a while.

I feel like i'm on the edge of a tall building and one foot is already hanging and the other one is about to creep over the edge and i'm going to fall into a point of insanity that I won't be able to return from. I've been hanging so tough, but i'm getting weaker.

I guess I just need you all to hold me up through this unbelievably rotten time i'm having. I just don't know where to begin. I don't know if I can handle the trip to Milwaukee. I need to call Dr. Davis----( Dr. Grubb's friend the psychologist)----he should understand. But here's the thing-----I feel so overwhelmed I wouln't know where to begin with him, and how it will take a toll on me physically. I've been wanting to see him for a while, but I have been afraid to face all my up-hill battles.

I just ----soooo tired.

Forgive me for feeling sorry for myself, but I had to get this off my chest.

Love you all-----thank's for being here.

Julie :0)

[ariella]

Hi Julie,

Just writing to send you love. It's so understandable that you feel overwhelmed. And extreme exhaustion is the worst, I remember telling my best friend a few weeks ago that I would rather drop dead. It took a couple of weeks, and I realized it wasn't me, but the exhaustion talking. You have documented things going on, no way any doctor could responsibly tell you that this is in your head. I seem to have missed the story, the doctor mixed up your records with another patient????

For me what worked was getting it off my chest, so I hope just posting was helpful, nothing to apologize for, we are all going through this. Again, lots of love. Try to rest, there have to be some better days coming...

Ariella

[Dawg Tired]

Julie, I think you are right. These doctors dismiss us all as "head cases" and we are so exhausted to begin with from fighting for an answer that we are too fatigued to help ourselves when the problem is found.

I so much hope that you call Dr Grubbs friend, at least having someone to listen to you might give you the boost you need to go to your spine doctor.

I think many of us have had times when we just knew we were going to fall apart but fortunately we had this place to turn to.

[mom4cem]

Hi Julie,

Hang in there! I have pretty much daily issues with my heart. Either tachy, runs of extra beats or it feels like my stomach drops. like on a roller cocaster. (I usually feel the stomach drops usually as an adrenaline rush) I also notice that after, and it usually turns in a tachy episode, that I burp alot. I figured it had a lot to do with the vagus nerve and the stomach. My cardio even agreed. Not always but many times it happens. The past few days I have been bloated and when I eat I feel it up to the back of my throat and the early beats or extra beats start.

Sorry you are feeling so down, , kids can certainly give you a beating, that's for sure.

Take care of yourself and I hope you feel better soon.

[persephone]

Julie, I've felt desperate like this too. POTS, NCS and EDS can leave me utterly demented. But please remember you are NOT alone. You are loved- you are a valued member of your family--you have a husband who wants to spend the rest of his life with you- AND you are a valued member of our community,too.

Hugs.

[MomtoGiuliana]

Julia--you are going through a terribly rough time--and doing it with much strength, dignity and grace. You have all my admiration, and my thoughts are with you.

Katherine

[MightyMouse]

Hang on Julie, I know this stinks for you now, but the rollercoaster always has an upsurge. I don't have any special advice--although I think seeing a neurosurgeon like Heffez might have some help for you to keep things stabilized. Hugs.

[Poohbear]

Hi Julie!

I had been thinking about you and wondering how you were.

I wish I had some great words of advice but I don't. We do care about you and wish the best for you!!!! In terms of calling Dr. Davis I think you should call him and be honest...tell him you feel like you need some support in dealing with the chronic and worsening medical condition you have and yet you are also so exhausted that you wonder if you can really "work" on any issues. The person I work with is EXTREMELY understanding and supportive of this type of thing. Some weeks all I can talk to her about is how frustrated I am with Dr's or how I'm upset that I can't do more and other weeks I'm able to do more "Work" and not just vent. She is patients, reminds me that what I'm feeling and going through are normal for anyone dealing with chronic illness etc etc.

My personal experience is that having so many Dr's belittle you and not listen seems to strengthen our own "critical" voice inside. One thing I learned about myself is that, at this point, I will sometimes say horrible things about myself to myself (such as, "you're worthless" or "everyone would be better off if I wasn't here anyway because I'm just a burden" or "you should just get over it and do whatever someone is asking you"); I know this sounds kinda strange but over time, I learned I was saying these things to myself knowing many people AROUND me were going to say these things and so in some weird kind of way if I said it to myself first and tried to believe my own voice saying it then it didn't hurt as much coming from somebody outside of me. The problem is it was still very destructive coming from myself. I still battle with this because it's easy for me to hear my own critical voice.

I wish I had some good answers. I know how much the exhaustion and fatigue mess you up as well and how weary it can get dealing with this stuff every day.

As Nina said, the roller coaster will have an up side at some point. Try to hang on and meanwhile, there is nothing wrong with occupying yourself with a good book (or whatever you choose) to "escape". Sometimes that's what gets us through these times.

[Guest Julia59]

Thank you so much---all of you are so good to me. Thanks for understanding.

There is no way I can help myself any longer----mentally that is. I'll need to get some help in that department. It's going to be hard, but if I don't I fear i'll end up in the looney bin. Ken Davis, here I come.

N0. 1---------> i'm calling Dr. Grubb's office first thing Tuesday morning to ask what the heck happened to my heart---and why in the world it felt like it was coming to a halt, quivering---what ever the heck it was doing. I had to stop walking towards the steps leading to my son's apartment. I couldn't get my breath. It felt like there was a little electric shocker in there shocking my heart.

I was also very exausted----very, very exausted. My legs felt so heavy and weak at the same time.

I don't know if it's the POTS---or if the brain stem compression is getting worse. This will definately happen with upper spine and brain stem compression. So much has been going on, and it would take a terribly long post to explain it all. In a nut shell---------(I have more neuro symptoms---other the the usual POTS symptoms)

My husband and I are just going to lay low. We are not going to the usual cook out at my folks house. I'm just not up to making the brownies and pasta salads.

Plus, they don't understand----and I don't feel like explaining myself only to get more weird looks from them. I should say---some of them. A couple family members do understand.

After I posted last night I felt better----enough to help me relax and go to sleep. My husband rubbed my back to comfort me.

And Mich. Jan------you dear heart----thank's for the support and phone call. Here you are with everything going haywire with your husband's health----and yet you reach out to help me, and other people. You know your in my thoughts and prayers, and you know i'm only an hour away if you need anything.

I'm in a lot of pain, and so wiped out, but I do feel a smidge better emotionally----and I have all of you to thank for that, and my husband who takes my crabbiness. The poor guy---I had to yell down to the basment to ask him how to spell crabbiness. He came running upstairs asking me what I wanted after I snapped at him for making me yell with my sore head-----then I had to ask him how to spell----"crabbiness"----how funny is that. I started to laugh while asking him in my crabby way to spell the word. You all know my spelling is for the birds, and I was too lazy to look in dictionary.com So if it's spelled wrong blame---Ron----

Sometimes I get a little crabby----OK---maybe medium crabby. Sometimes it keeps me from falling apart from the fear. My husband understands. It usually only comes in short spurts-----

You are all a blessing,

Julie :0)

[Guest Julia59]

OK-----I looked up crabbiness in dictionary.com----I had it spelled right to begin with.

I'm telling you---it's the easy words that get me. The harder ones I can spell.

[dizzygirl]

Julia,

hi I am so sorry that you are so sad and not feeling well.

I wanted to offer you my support and encouragemant getting through this difficult time.

I, too, also get the weakness and heaviness in my legs, my cardio doc thinks that it is pots/ans probs. Dont really know what to do to allieviate it, I wish I could offer you more!

Please take care

Linda

[DancingLight]

julia,

i'm sorry that i am so late to chime in...i'm not keeping up so well either and then, with no internet access! eek!

but, i just wanted to let you know that i am thinking about you. i have felt incredibly desperate at times too...as i have written to you before, so will spare rambling about it again.

i do feel guilty sometimes too for complaining when others have so much more on their plates...but i also know that our suffering is our suffering, and it doesn't make it any easier to say 'so and so has it so much worse i shouldn't feel this way'. should is a terrible word! there are no shoulds...easier said than done.

also, your comment about calling ken davis was interesting...that you feel so overwhelmed you don't even know where to start. well, i know that i have felt that way too...but from what people have said about him on the board he 'gets' this chronic illness stuff. that means that he will break it down for you, he will help you figure out where to start. it's not your job to do that...it's his. i know that i think 'where do i start' when my therapist calls or when i used to go to her office, but it's her job to break it down for me. you know? am i making any sense? probably not, b/c i cannot even see what i am typing i am so foggy. aaarrrrggghhh. anyway, sometimes just the venting about whatever helps me to feel better. i don't want to talk to her or take the energy, but when i do it helps and is worth it.

please julia, do not think you are 'weak' b/c you need mental 'help' too...it's so often part of the package you know? chronic illness is hard...k?

just needed to chime in with some emotional support to you...tomorrow i must catch up with michigan jan and ethansmom! and whatever else i am missing on the board...which is a lot lately! i hate that i can't keep up! and i'm seeing so many piles of junk in my room! ugh!

goodnight...the old doxepin is certainly kicking in!

hang on julie and please seek the help you need without feeling guilty about it...

i'm grateful that you reached out here too...

emily

[Ernie]

Hi Julia,

I agree with Emily that there is no shame in finding psychological help when you have a hard time. I know Dr Grubb speaks greatly of Mr Davis. I am sure he will be able to help you see through all this hardship.

Sweet dreams

Ernie

[Radha]

dont ever apologize for what you are feeling, or feel guilty, we all have a right to our feelings even when they dont make sense or not logical, and always feel free to express your concerns, no matter how small you think they are, this group is a great group of compassionate caring people, and i feel fortunate to have met all of you,

hang in there,

radha

[Sunfish]

julia -

i'm a bit slow in the response as i've been in a bit (er...a lot) of an overwhelmed state myself the past few days, but i just wanted to send a hug your way & to say that i can relate to a lot of what you voice. obviously our situations are all different, but the desperation of getting thrown around by the health system & doctors & hospitals - not to mention our own bodies - is something that most, if not all, of us can get to at least a degree. and when i read your description of the feeling so overwhelmed that you don't know where to even start in trying to explain, sort through things, etc....i had tears in my eyes b/c i can so feel that feeling. and then the mind games of feeling like there are people dealing with bigger things...like others have said, anything that's big to you is big, ya know? of course having perspective is good & useful in its place, but not if it means you're pushing your own feelings & realities & issues under a rug. i did that for years in my "past life" and it definitely did nothing but cause major problems. i'm glad you were able to lay low today & hope that you're able to get some phone contact with folks tomorrow.

keep on keepin on...

:-)melissa

[mindylee1]

Hang in there Julie. I know just writing that felt good for you. Sometimes I wish I had a padded room in my house where I could go when I am angry an just punch the walls... but my luck I would still find a way to hurt myself.

You know what is so off about what we are going through.. it the face that these up and down cycles of strength and anger, or courage and depression are every other day.

What I mean is one day I can be so full of courage.."We will beat this thing, if it's the last thing we do." And I will really feel unstoppable. But the very next day I am curled up in a ball crying wondering if the pain and misery will ever end. Let's face it our bodys have no clue what is goin on with all of these meds we are on...esp those SSRI. And boy if I miss those watch out.

Julie you are in my thoughts and prayers, as is every single member on this site. I'm still not sure of my path in life, I am able to finally say that I have become a better person because of this. That may sound crazy but Im sure some of you know what I mean. Someone that really takes every moment and everyone for what they are worth. My husband and I were talking about the support group tonight and I told him that now that I am back here with you all I don't know how on earth I lived with out it. I know that when I am at the doctor everytime it will be my mission not only to seek help for myself but for everyone here.

Reading your e-mail Julie made me cry, You sounded so much like me, just raging because you are sick and tired of being sick and tired. I fully agree with you about Dr. Davis. His card has been in my wallet for a long time now. I guess I feel as you do, I'm scared to let it all out, because when I do I don't think I'll be albe to stop. But I think there is no better time then now, because it will only continue to build.

Best of luck to you come here to vent whenever you need it.

Mindy

[avais1]

Hi Julia,

Don't forget, the ANS becomes supersensitized when under extreme stress, and you definitely have been under extreme stress. Your nerves are firing impulses because they feel, basically, ragged right now. It is OKAY to feel how you feel right now. Your body is still reacting to all of these strange things. You feel you are in danger, and your body is reacting as though you are running from a tiger. It is OKAY that your nerves are completely frazzled, the nerves to your stomache, the nerves to your heart, the nerves to everything. After what you have been through, your body is still responding. With our delicate systems, it takes longer to "reset" back to normal. But you will, I promise.

There is no shame in seeking help for a tired mind. I have done it many times. It would be worse for someone to NOT seek help, as then they are living in denial, and then help will never arrive. I applaud you for going forward to get some help. That in and of itself takes a lot of courage, and you should pat yourself on the back for recognizing when you are drowning. Many people do not. Good for you!

I promise the sun will come out tomorrow!

[Guest Julia59]

I'm really at a loss for words---you all have been so supportive.

Thank you, Thank you, Thank you-------------

A while ago I just got off the phone with my Brother. He is one of the family members who I think has a fairly decent understaning that i'm struggling with my health.

He called to ask how I was feeling. I told him basically everything I told all of you and he listened-----he was just very quiet, and listened. He seems to believe me, and he never makes me feel like this is in my head.

I will see Dr. Grubb's nurse practioner (Debbie) tomorrow. I called to tell them about my near collapse and they called my back within an hour to let me know I could see Debbie. My appointment with Dr. Grubb isn't until October.

Then I made an appointment with a psychologist named BETH. She helped me in the beginning of this whole mess, and ironically when all the docs thought I was nuts, she was the only one at the time who knew I wasn't, and she tried to help me get answers. My insurance only covers Ken Davis 75% now, and Beth is only a co-pay of $15.00. I like them both, so I went with BETH and the better coverage.

Then on July 18th we drive to Milwaukee to see Dr. Heffez--(neurosurgeon) on the 19th. Hopefully he can give me some kind of perspective on what to do about all this pain and my upper spine issues. I tolerate pain meds so poorly, so I try to manage the pain with ICE and tylenol. It helps, but it is so temporary. My pain tolerance is high, so it helps, but the pain in the lower cranial area kind of beats me up a bit. The weakness and fatigue are pretty bad, and that has me worried the most.

I will print my posts to help me remember what to tell the nurse practioner.

Then I need to find out what to do about my problem with the sleep studies. I can't sleep for them for some reason. The pulminologist is almost certain I have some kind of apnea because he noticed a drop in oxygen levels even when I dozed off. They just couldn't record any REM sleep for either study.

So it looks like i'm trying to take the bull by the horns and get something done to help me through this.

But if it was not for all of you here on this site---I truly don't think I would be holding up very well at all.

You are all gifts to me.

Julie :0)

[becky]

Hi Julie,

i just wanted to say that i'm new to this site, but your story really touched me.

i know just how you are feeling. i just wanted to say that things will get better for you.

i know it's a long hard struggle to find a doctor who will listen to you, take you seriously and fit all of the pieces of the huge puzzle that seems to be POTS together to find some kind of treatment that will work for you, and i hope you get there soon.

I was sent to see a psycologist last year after a diabetic specialist in the hospital told me that fainting is what "silly young girls do". i'm glad i didn't listen though, i carried on fighting, sometimes it felt like fighting the doctors was harder and more tiring than fighting the illness.

Sorry that was a bit of an essay, just remeber that there are lots of people here to give you love and support and who know what you are going through so you aren't alone.

becky x x x

Edited July 6, 2005 by Michelle Sawicki

[Sunfish]

julie-

i'm so glad to hear that you're going to see the new NP & that you made the appointment with beth. also that you had a good phone call from your brother & that your plans are set for your trip to see dr. h. i know for me that no matter how bad things are i always feel better when i have a "plan" of sorts looking ahead...appointments, calls, etc....i think it just helps me feel that there is something i can be doing, ya know? i'll be curious to see how your appointment goes tomorrow...i hope it's helpful & that the wait isn't too long.

:-)melissa

[DSM3KIDZ]

Sorry I couldn't post earlier, been kinda loopy. I'm sorry to hear how your feeling. It breaks my heart because I can feel it to and I hate to think of someone else feeling so down. I'm glad to see that you have a plan. That seems to help me hold on to hope. I live in Milwaukee so when your passing by, send me a wave! I hope this doctor can help you. Good Luck and I'll be thinking of you.

dayna

[Guest Julia59]

I saw Dr. Grubb's nurse practioner today. I'm so glad he has another well informed, intelligent---and (nice)-------person working for him. I thought her name was Debbie, but that was another nurse who was also very nice. Her name is actually Bev---I suppose short for Beverly.

She thought I looked familiar and it turns out we were the same age and she went to the same high school. I didn't really remember her, but I think my brother James might. I was raised in west Toledo, and so was she-----right in the same neighborhood.

Anyway, all of you will really like her, she is very thorough. Wow---how nice to discuss my recent health issues with someone who actually listens, and then asks the appropriate questions---all in the same visit. She really has her head on straight, and Dr. Grubb couldn't ask for a better NP.

She listened to my heart, and checked my ears as I have had ear fullness issues also. We discussed my severe fatigue and weekness problems. When I told her the ear fullness might be connected to my on going chiari/cervical cranial instability issues, she didn't look at me like I came from another planet. She understands the seriousness of my upper spinal issues and takes them seriously.

She asked what I was doing about the spinal issues, and I told her I had an appointment this month with Dr. Heffez. She covered everything, and I left the appointment feeling like I had a good start to getting some relief and answers.

She said she was most concerned with the arrhythmia I had and said she would talk with Dr. Grubb on how we can capture the next one. It's difficult as I don't have these bad ones frequently-----but they seem pretty severe and probably should be recorded when they happen to make sure it's not serious.

The next step will probably some kind of monitoring of my heart over a period of time. I will hear back from her tomorrow or the next day regarding what they will do to monitor my heart.

Thanks again everyone, you have really helped me through this rough period. I'm still struggling, but my load feels lighter thanks to all of you.

I'm also glad my appointment went well today, but I knew it would. When I talked with Bev on the phone, I could tell she actually cared about the patients she worked with-----so I knew my appointments with her would be good.

I wanted to give you all a little update of my plan in motion...........

Julie :0)

[michiganjan]

Julie,

I like your plan. I am glad you have come up with such a good one--just address everything until it all gets resolved.

Thank you for all you caring and sympathy.

Michigan Jan

[Ernie]

Hi Julia,

I am really glad that your appointment went well with the NP. I hope that they will find the source of your arythmia.

Ernie

[Sunfish]

julie -

so glad to hear that your appointment went well. was the wait too bad? i've spent days camped out at MCO many a time (i'm from toledo too but have been in baltimore since 97..i think we actually have some mutual toledo friends/acquaintences). hearing you speak so highly of Bev is encouraging and good to hear...for the sake of both the patients & Dr. Grubb himself. i'm wondering if i should try to get in to see her now before my appointment with dr. g in november...hmmm...

anyway, glad to hear your plans...like i said before, plans always give me at least a bit of reassurance in the midst of craziness...i'm hoping they do the same for you.

take care,

:-)melissa