Need understanding

In a previous post I expressed ow supportive my wife is. TO day I mention that I read a good review of the NS we are going to see at Hopkins and she turns and tells me that CM is not my problem. When we went to the NS ini Pittsburgh In January, she told me that she believed that the NS here (in Pitts.) was wrong and everything was caused by CM not the Arthritis in my neck. Completes 180. I want her to go cause she remembers what I can't, but if she is not going to be supportive what do I do?

Help please

What made her do this 180??????

Totally agree with zazzle52 suggestion if wife won't go.

Take Care,

Lori

Lori I don't know. We had it out during a superbowl party. She told me then I just misunderstood her and that is not what she meant. I am so confused and the extra stress has caused symptoms to really flair up. Miserable physical and emotional. Top it off tomorow stay with relatives to go to consult on Tuesday @ Hopkins. GRRR just don't know what to do, all I know is physically I ca not make the trip myself. Going totry and get some sleep I think.

Razzle she was supportive and as I told Lori above I need someone togo with and no other relative is willing or able. I do have to give her more credit than I do my own mother. I or she will try to tell my mother about what is going on and the phone mystery ends or if they are visiting us they put their hands onme and say I am healed because the proclaim it and it has to work. So this adds more strain to an already strained relationship.

I have a recoder packed but where she (my wife) helps me is by recalling and telling the doc on how I act or recalls other symptoms I experience cause I just can't remmeber. THat is why she is shuch a vital part of my treatment team.

I pray for 3 things daily and they are 1) that CM does not effect anymore of my family especially my 2 daughters and if the current one (first trimester) makes it to term that they are not effected by CM.

2. I want to be normal and return to work. I enjoyed working especially teaching but due to symptoms I can't work let alone drive anymore.

3. can't remember - memory is shot and has been for some time now, just came in; I want it too end, this disease malady or whatever it is to jus go away and quit screwing with people's lives. Few poeple understand unless you go through it. I am so sick and tired of people saying well you look fine so you are able to work and do stuff quit being lazy.

oh well good nite and sorry if their are any spelling or grammar errors; it is just bad right now

Take care and thanks for letting me vent some more.

Love and blessings

Michael,

I’m sorry to hear about your wife’s lack of understanding. This is hard to go through, especially without the support of our loved ones. My mom and sister have their moments of empathy, but for the most part they don’t seem to care or understand. They’re constantly critisizing me and making rude comments. The funny thing is…I used to work 70 hours a week and I have always been self sufficient. I’m only able to work 2 days a week right now and I still pay most of my bills. On the other hand, my sister hasn’t worked at all for the last 3 years and before that she only worked off and on. She is 30 years old and my mom has paid some or all her bills her entire life. She has the nerve to critisize me?! My point is…sometimes people just don’t make sense. It sounds like your wife has been supportive in the past. Maybe, she was just having an off day and took out her frustration on you. You said she’s in the 1st trimester of her pregnancy…maybe, she wasn’t feeling well and her hormones got the best of her. I don’t know…I’m just hoping this was a one time thing and she’ll go back to being the supportive wife that you’ve talked about previously. If not, you should take Razzle’s advice about the tape recorder. To help with remembering your symptoms, print off the symptom list on this site and mark the ones that affect you. Hopefully, she’ll come around and this won’t be necessary. Either way, you have all of us and we DO understand and believe everything you’re going through. Good luck with your appointment! I hope it goes well and they’re able to help you:)

Crystal

Michael,

I'm sorry you both went through that. I hope it was just a moment of weakness for your wife and she needed a venting moment. I agree that printing off the symptom list and making notations of all your symptoms and how often they occur is the best thing, even if you have a family member with you. Good luck and let us know how the visit goes!!

Kellie

She is pregnant so she is hormonal. Today is a new day. Approach it with positivity in your heart and mind. Write down all your questions for Dr. Weingart and all your symptons, because he will ask. Take the tape recorder to capture all he says as well as all you have said. Also you can always email Dr. Weingart with additional questions or more info on your symptoms/condition. Just let the stress go cause as you know it makes your condition worse. You are going to see a good experienced doctor who has done over 800 Chiari surgeries. He does on a average, 6 a week so he is experienced, knowledgeable and will offer the best his experience has to offer. Just focus on the fact that you will be well again. Don't stress and understand your condidition is stressful for your wife as well. This is all new to her and to you so be assured you are on the right track to get some real help and at the least, information. Don't forget those MRIs tomorrow! Good luck and relax, release and be at peace in your mind, help is on the way.

Michael,
First off I am sorry for what is happening right now. I went to the ns last Friday n bc he said my Chiari was only 4mm and surgery would do me no good, my fam was automatically like…ok focus on something else now and get past this. I was so upset bc I know how I feel! I finally told my mom tht if she would take the time to do some research maybe she would get me n know I’m not crazy! I actually had her read some posts on here cus she doesn’t believe in anything on the Internet and this sight has real ppl! Her first response was…well tht would make me depressed too…tht mad me so mad and I said tht is how I feel! She’s like u wanna go to sleep n not wake up? Yes mom, some days that’s how I feel, this is real! After leaving it and giving her time to think she has been more understanding. Idk if that would help in ur situation or maybe u have already tried it? It’s horrible to feel the Way we do n not have those feelings validated. I’m like u, I just want to feel like me again, that’s all I want n I know u would be doing all the things u pray for if u could. I have kept a journal of my pain and symptoms, not tht it did me any good at my ns appt bc he said it was chronic migraines but tht would help u to tell ur ns how uve been acting ect. Write things done as soon as u experience them if u realize uve experienced them. Please let me know how things are going for u today, and know u r in my prayers

I really wonder why this is so common. Not one person in my family believes that this is my problem either. One of my family members today suggested I see a new psychiatrist (which I have already done) and I finally just said, " This isn't going to fly with me anymore. I don't need any more uneducated opinions. My skull is too small for my brain and I have pictures of it."

My own mother said she would be there for me to get through this. The other day she came over with the report from the Chiari Institute that says I have Chiari 1 Malformation, Retroflexed Odontoid, and Basilar Impression (with pictures). It says I need decompression and Craniocervical fusion. She watched me read through it and then said, "I don't support this." The next day I ended up in the ER. She came to pick me up because they shot me with Ativan. Haven't heard a word from her since.

On Wednesday I am meeting with my psychiatrist who i've been seeing for the past 6 years (she is awesome) to show her the report. She's usually a great mediator for things like this so I'll keep yall updated on how that goes. I'm so sorry that there are so many of you that have to deal with situations like this <3

Update: "misunderstanding" put behind us and she came with full support tot he appointment on Tuesday at Hopkins. Anyhow she is back to being 110% supportive. Don't know what happened explosion, dust, calm and support is back. Thank everyone for your support, it really helped when I did not know what to do. More about Hopkins later, still trying to wrap my brain around all that happened, but needless to say in brief he said I am not crazy but all my symptoms are due to my POTS not with finger quotes "chiari". more later

Great news bout ur support system!

Hi There Michael...

Oh, I am so thrilled that you two are back on track with this....

When you feel up to it , tell us about Hopkins and the POTS. Thanks.

Peace,

Lori

Michael, I am very glad your wife went with you to your appt. As I read your and everyone's posts I began to cry. No matter how much our loved ones care about us, they don't truly understand. I have an amazing husband and daughter, but at times I know they get tired of me feeling bad. I had such a wonderful life and now it is just a memory. It also bothers me when people compare their maladies to everything I have been through. I know pain is subjective, but they have no clue what we experience. It is very hurtful. I think they think just because I had surgery to "fix' the problem, I should be healed. This isn't that kind of illness. We are a society that expects a cure all pill. Wouldn't that be wonderful....Until then we will suffer in silence & misunderstandings.