Some people just don't understand.......... :(

First off I am gonna apologize cause this is gonna come off as me whining cause I kinda am...

So my sister knows what is going one with me and has know for several years and she has seen the progression of my symptoms, but that still doesn't stop her from getting upset when I don't feel up to going shopping with her. She just doesn't understand that when my legs and feet hurt so bad the last thing I want to do is go shopping or anything that involves standing around or walking. And my husband, I luv him to death and he does his best to try and understand and empathize with me, BUT he just can't.. When I have my terrible headaches he tries to have the kids leave me alone and when they don't he shouts at them which makes my head hurt worse. I could go on forever about how

"when my _______ hurts or is bothering me, I don't feel like doing anything, and No one really understands or fully accepts that"

I'm sure I'm not the only one that feels this way, but I sure do feel like in "my world". I was talking with my husband last night. I am going to the ENT on Tues to discuss this Tornwaldts cyst and frankly I think he is plain sick of listening to me, but I asked him what he thinks. He said " I think u should just tell the doc to do whatever the heck he wants to do" and I was a little shocked by this all because he knows that I like to be in control and that I am sick of feeling unwell.. I told him that's how things have gotten they way they are is docs doing what they want an me NOT taking control of my own healthcare and demanding that things be further investigated or treated and so on. I also explained to him that someways I accept that I am gonna feel like crap for the rest of my life and that its probably "normal" and that everyone else probably feels this way too. But then there are days that I KNOW that how I feel is NOT normal and not everyone feels like this and I shouldn't have to either... And, I asked him if it was too much for me to ask to be able to feel like him and everyone else, and he just walked away.

Does anyone else ever feel like this? I mean I know that everyone has health issues, and all can get from the doctors is "borderline chiari 1 malformation" and a "tornwaldts cyst" which in there eyes translates into u are FINE...

I'm scared that I won't be able to get a Chiari Specialist to look at my scans or my records, and the rejection kills me. One can only take soooo much before they just say screw it.

Thanks for letting me whine and vent!

Tasha

It IS very frustrating when you know something is wrong and no one else seems to recognize or acknowledge that. I heard a lot of times "but you don't look sick" and I oftentimes felt that my husband thought I was just lazy. I sometimes felt like he had heard me say I was hurting so many times that he really didn't even hear me; it was like saying the sky was blue and it went right past him. He used to complain a bit that I was walking into people when I walked down the street because I wasn't walking in a straight line or he would raise an eyebrow when I took so many rest breaks while doing things around the house. . Unlike you though I didn't have a diagnosis. I have gone most of my life without knowing what was wrong and have been treated for various "symptoms" over the years without knowing that I had Chiari. It wasn't until after I retired that I finally got lucky enough to find a doctor who helped me. Don't accept that you have to feel that way. There are compassionate doctors like mine out there who will take you seriously and be honest about whether or not you need surgery. My neurosurgeon is one of those special people who really cares about his patients. He did my surgery last year; while I still do have some problems, it's really nice to not be so dizzy and foggy feeling ll the time. After I had a dignosis and my husband learned more about chiari, he became much more understanding about things. I don't know what I would do without him; he helps me so much Don't give up. While it's important to have a doctor you trust, it is even more important to take charge of your own health care and be persistent, demand answers, and do whatever it takes to make things better for yourself. I pray you get some answers soon.

Hugs

Shirley

Thank you Shirley! I appreciate the kind words… I hope that he will some day get it, but i fear that he won’t. He just don’t care to educate himself on anything that is wrong with me. He still has NO clue what a thyroid is and what it’s function is or even where it is located!. He tries but I just sometimes feel like its not hard enough!

Do you have any suggestions on how to get him more involved and educated on what is going on and what can possibly happen here>? I mean, I’m not gonna lie my headaches are sooo bad and my head hurts all the time If I was offered a surgery I wouldn’t think twice about it, I would just say yes! I am willing to do anything to get my head to stop hurting!

I’m sorry you’re having such a tough time. You can always just stand strong and take charge of your healthcare. Seems like it’s so easy to misunderstand this disorder even for dr’s.

luvmy2grls said:

Thank you Shirley! I appreciate the kind words… I hope that he will some day get it, but i fear that he won’t. He just don’t care to educate himself on anything that is wrong with me. He still has NO clue what a thyroid is and what it’s function is or even where it is located!. He tries but I just sometimes feel like its not hard enough!
Do you have any suggestions on how to get him more involved and educated on what is going on and what can possibly happen here>? I mean, I’m not gonna lie my headaches are sooo bad and my head hurts all the time If I was offered a surgery I wouldn’t think twice about it, I would just say yes! I am willing to do anything to get my head to stop hurting!

As for your husband I would just inform him of chiari as best you can. Stay strong! You are your best advocate, even at home. Sorry for two post I’m on my phone and it’s acting weird.

tashasheart4u said:

I’m sorry you’re having such a tough time. You can always just stand strong and take charge of your healthcare. Seems like it’s so easy to misunderstand this disorder even for dr’s.

luvmy2grls said:
Thank you Shirley! I appreciate the kind words… I hope that he will some day get it, but i fear that he won’t. He just don’t care to educate himself on anything that is wrong with me. He still has NO clue what a thyroid is and what it’s function is or even where it is located!. He tries but I just sometimes feel like its not hard enough! Do you have any suggestions on how to get him more involved and educated on what is going on and what can possibly happen here>? I mean, I’m not gonna lie my headaches are sooo bad and my head hurts all the time If I was offered a surgery I wouldn’t think twice about it, I would just say yes! I am willing to do anything to get my head to stop hurting!

Hi...

This is the place to vent...talk it thru...whatever you need..WE GET IT!!!!!

Shirley and Tasha said it all, cannot really add much other than only you know how you feel...do not let anyone make you feel as though this is not real.

I would highly recommend the book "Contents Under Pressure" by Ray D'Alonzo .....you read it and have those close to you read it.....I wish I had done that...I got the book a yr or so after surgery!!!!!!

Keep us updated!!

Lori

Thank you! I will look into getting that book! However getting my husband to read anything other than sports illustrated or related to cars or MEN in general in impossible. When I was pregnant with out youngest I had a terrible time with depression and paranoia for some reason and I talked to a counselor to help me thorough my absurd thoughts and she recommend that we both read a book and for the life of me I can't remember the name of it. ( my memory is shot) but i tried everything even leaving it the bathroom and telling him if he loved me he would read it and telling him I would read it too him. I guess he thinks he is a man's MAN and they don't read silly books I dunno.

Maybe I will just beat him over the head with it and thats how he will get the information in his brain!!!! lol

I'm gonna go check out that book!

Thank you


Tasha

I take him with me into the doctor's office for my appointments. I brought up some of the stuff in front of the doctor and HE explained a lot to my husband. We're lucky too that we can attend the Chiari Foundation educational seminars that are held here in Washington DC. They are posted on line under resources on this website. We always have some expert in something related to chiari give a talk. But I think my husband really kind of opened his eyes to what I was experiencing and listened to Dr. Henderson when he explained the pain associated with Chiari. He'd kind of become immune to me groaning about hurting I think. Maybe taking your husband with you to appointments would help. If your doctor doesn't give you answers and offer help, you should keep looking. I saw a lot of frogs before I found a "prince" who could help me. I knew something was wrong, just didn't know what and that WAS very frustrating not just to me but for my husband too. I was saying I was sick and the doctor wasn't finding anything wrong - just giving me a different colored pill each time. There is a Chiari/Syringomyelia Handbook for patients and their family on line. I learned a lot from that when I was first diagnosed. I don't know the website but I think if you type in the title (CHIARI MALFORMATION AND SYRINGOMYELIA A Handbook for Patients and their Families) you will probably find it. If you don't I've printed out a copy of it and I will be happy to make a copy for you if you send me a private email with the address to mail it to. You should be able to get it on line though.

I guess we have to be a little patient with the husbands. I think husbands always want to the tough guys and the ones who fix everything. When they can't fix us, they feel kind of helpless, a little bit like they are failing us and maybe kind of shut down a bit and pretend nothing is really wrong. I know when I present a problem to my husband he always thinks I am looking for him to provide answers or to fix it - Sometimes I have to explain that I'm not looking for that and that I'm just telling him about it. You might explore whether or not your husband is feeling like that and maybe reassure him that you are not looking for him to fix it but just to be supportive of what you are going through.

Hugs

Shirley


luvmy2grls said:

Thank you Shirley! I appreciate the kind words.. I hope that he will some day get it, but i fear that he won't. He just don't care to educate himself on anything that is wrong with me. He still has NO clue what a thyroid is and what it's function is or even where it is located!. He tries but I just sometimes feel like its not hard enough!

Do you have any suggestions on how to get him more involved and educated on what is going on and what can possibly happen here>? I mean, I'm not gonna lie my headaches are sooo bad and my head hurts all the time If I was offered a surgery I wouldn't think twice about it, I would just say yes! I am willing to do anything to get my head to stop hurting!

Tasha

I meant to say something about the depression too. I hope you won't allow yourself to go there. It's really a slippery slope and it only makes things worse. I used to get headaches so bad I wanted to cut my head off to get rid of them so I do know that's hard to deal with. And, then not having someone acknowledge what you are going through makes it even harder. Those beautful childen need you, so I hope you will remain positive and optimistic too. From 2008 to 2010 I kept getting more and more bad news and I thought it would never end. But it did. My bad time passed......yours can too. Answers are out there; sometimes when one doctor doesn't do the surgery, it is a blessing. My first neurosurgeon refused to do the surgery and later I found someone who was not only more skilled but also very compassionate........sometimes the answer is no for us because the plan is for something better to come along....it happened for me.....it can happen for you too. I hope it's soon.

Hi,

I kind of get what you mean about your husband not understanding, and a lot of other people don't either. When I tell people I have Chiari, they say you have what?? My husband said, now what? So I'm kind of alone here with this thing.

I am an unintentional caregiver for my husband's step father. We actually moved in with him because my husband wants him to be independant as long as possible and be able to stay in his own home. Nice that he consulted me huh? I'm just grumpy most of the time living here. Grandpa is 87 and looks as if he's gonna live forever just to torment me. He can't hear well, turns up the TV full blast, then wants to talk about the good old days, and I'm supposed to comply. Well I am very sensitive to noise, I have tinnitis, occular migraines that I haven't figured out what brings them on. (could it be the STRESS??) If I try to tell him the physical problems I have, he just said, well, I never heard of that. Then tells me all his ailments.

It's ok that you need to vent and feel like you are complaining, but we get it, really we do. Just complain away, maybe we can all find stuff that helps us sometimes, and give each other suggestions.

I get pain down the left side of my neck and into my shoulder, and if I type very long, pins and needles down my arm and into my hand. But, I have a TENS unit which helps I think, it tricks your nerves into ignoring the pain for a while. There is usually some decent relief most of the time. If you can get your doc to prescribe one, and you have insurance, it's usually no cost, and the pads that are sent (they are sticky pads with wires) are usually a one time copay then they send them at no charge after that, depending on your insurance.

Hang in there, we are here for you.

Hugs,

Cara

Thank you Abby. This is the best thing that's happened to me all day.

Love,

Cara

I know exactly how you feel. When I first got diagnosed my husband had no clue what Chiari Malformation was nor did any of my friends or family members (I had never heard of it either!!) I felt so lost and alone. I had no one to talk to about how I felt because they would all look at me and say "well at least it's not Cancer" or "well you don't look sick" (Ugh!) I eventually quit talking about my pain or symptoms with anyone because I felt they were getting tired of hearing me "complain" all the time. I started using the word "fine" anytime anyone asked me how I felt.

Finding this support group was honestly the best thing in the world for me. It was so nice not to feel crazy or alone!

I hope that things get better for you and you get the support & love from home you will need to get through it all. I know you will get support and love up here {{HUGS}}

~Dawn

I just joined the site and I am so thankful I found your post! I thought I was losing my mind!

I too am so thankful for this site…I only wish I had found this place while I was going to all these different drs. trying to get a proper Dx…I too, thought I was losing my mind!!!LOL

Hi...

Cara,

I have a TENS as well and it does help.

GREAT...now you are a caregiver and you are not well yourself!!! Be very careful not to hurt yourself while assisting your father in law....I 100% understand..I am caring for my mom and it is physically and emotionally trying, to say the least. There have been many times that I 'pulled something' trying to get her off the toilet, chair, ect...I am looking into a caregivers support group around here..

As far as people just not 'getting it' as far as Chiari goes....I guess b/c most of the time Chiari patients 'look good', don't overly complain, ect...family and friends feel as though we are A-OK!!!!NOT!! My hubby thought once surgery was done and the incision healed I would be ok....don't get me wrong...I have improved....but still have problems....now he understands....He used to say "WHAT NOW' too!!!!!!!LOL

Take Care,

Lori

Cara said:

Hi,

I kind of get what you mean about your husband not understanding, and a lot of other people don't either. When I tell people I have Chiari, they say you have what?? My husband said, now what? So I'm kind of alone here with this thing.

I am an unintentional caregiver for my husband's step father. We actually moved in with him because my husband wants him to be independant as long as possible and be able to stay in his own home. Nice that he consulted me huh? I'm just grumpy most of the time living here. Grandpa is 87 and looks as if he's gonna live forever just to torment me. He can't hear well, turns up the TV full blast, then wants to talk about the good old days, and I'm supposed to comply. Well I am very sensitive to noise, I have tinnitis, occular migraines that I haven't figured out what brings them on. (could it be the STRESS??) If I try to tell him the physical problems I have, he just said, well, I never heard of that. Then tells me all his ailments.

It's ok that you need to vent and feel like you are complaining, but we get it, really we do. Just complain away, maybe we can all find stuff that helps us sometimes, and give each other suggestions.

I get pain down the left side of my neck and into my shoulder, and if I type very long, pins and needles down my arm and into my hand. But, I have a TENS unit which helps I think, it tricks your nerves into ignoring the pain for a while. There is usually some decent relief most of the time. If you can get your doc to prescribe one, and you have insurance, it's usually no cost, and the pads that are sent (they are sticky pads with wires) are usually a one time copay then they send them at no charge after that, depending on your insurance.

Hang in there, we are here for you.

Hugs,

Cara

I totally get how u feel! My husband is probably the least emotionally supportive person I have ever met in my life. He plays the tough act all the time. We have been married almost 5 years and together almost 7 years and he has NEVER even been to a doctor. Says all doctors do is prescribe you meds that cause tons of other problems and that he will be fine. He doesn't seem to get that not everyone is like him or thinks that way. When I told him about my Chiari he said oh, you'll be fine and doctors will tell you anything to make their money. He began to think I was just being lazy, that I quit a job I absolutely LOVED on PURPOSE, and he would say very hurtful things. I could try and talk to him and he wouldn't even look at me, just kept staring at the t.v. I was at my wits end with him and I let him know more than a few times how he made me feel.

Well in Dec. of 2011 I went to see my NS. Now usually he would not go with me to doc's appts., nor did I want him to go because of how he would act. But this appt was in Cincinnati, 2 1/2 hrs away from where I lived and I could not drive there on my own. While in the waiting room he looks at me and says, I want to go back in the room with you. I could of fell out of my seat. My mouth dropped. Part of me was surprised and happy and the other part thought, why, so u can see if I am making this all up? lol

Well once back there and after the NS explained the need for surgery and what Chiari is and how surgery is a treatment not a cure and should slow the progression down, it was like a light bulb came on over his head! He FINALLY got it! I guess hearing it from the NS and how well they explained it, it finally hit home for him. He has been more supportive and understanding which has been a HUGE stress reliever for me. He has his moments occasionally, but hey, he is a MAN afterall. lol

Good luck hun and I will keep u in my prayers. It will get better!

Love and gentle hugs,

Tara

I am sorry I can't add much to what has already been said except that I am in an almost similar situation. My wife understands but our families do not. they say she is enabling me to be lazy. Vent and whine its okay we all have been there. Some of us, from reading the posts, more than others. I just hope it gets better from here for you.

Thank you very much… I have since been decompressed and hubby was starting to come around then he acted as if I was supposed to be magically all better when infact I’m not… I’m not gonna lie, I thought getting decompressed was gonna fix all my problems and was assured that the headaches would be gone… But there not, they are actually worse in some ways now, So it’s been a bit of a bumpy road and I think he is coming around this rime for sure. He was bummed because I don’t include him in my appointments, so that’s a start!