Is your spouse and or family understanding ?

Poll the audience here!

Moderator: pmaxwell

Is your spouse and or family understanding ?

Yes very understanding
37
32%
Kinda understanding
48
42%
Doesnt want to believe it
19
17%
Doesnt care either way
10
9%
 
Total votes : 114

Is your spouse and or family understanding ?

Postby razzle51 » Mon May 21, 2007 9:56 am

Is your spouse and or family understanding ?
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Re: Is your spouse and or family understanding ?

Postby debbarker12 » Fri Sep 26, 2008 1:01 am

My husband is Army Special Forces so he is gone 8-10 months a year...however, when he is home he pampers me and treats me like a princess. It was kind of cute today- we were getting ready to go see our friends new baby and my arms have been tired and burning...he blow dried my hair and straightened it for me. :oops: What a sweet husband eh?
Deb
(EDS, Chondromalacia Patella Bilat, SM C6-7, DDD, PTC, Low lying tonsils, Cranio-cervical trauma & instability)
~This Too Shall Pass~
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Re: Is your spouse and or family understanding ?

Postby Christy » Wed Oct 08, 2008 9:05 pm

I am newly diagnosed with CM and from the moment we heard those words, my husband has been so supportive and understanding. He is more helpful around the house now and tells me not to do certain things for fear that I might injure myself or cause further pain. He's been great! I am very lucky.
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Re: Is your spouse and or family understanding ?

Postby tattoodlb1 » Sat Nov 01, 2008 12:51 am

My husband is "TRYING" to be supportive, he tells me to stay home and get well, however he can be a sarcastic idiot at times, however I think he is scared. So, I would have to say he is great in that he is providing for me and telling me to take it easy.... yet he still believes the original NS who told me that my symptoms could not possibly be caused by my syrinx..... :twisted:

I did tell him that he could leave if he wanted because he did not sign up for a potentially disabled wife, but he said, No, I married you in sickness and in health, so he is endearing in that aspect. He also helps me shave my head. We look like twins now, we both shave our heads...pretty funny.
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Is your spouse and or family understanding ?

Postby Donn » Tue Nov 04, 2008 12:25 pm

My wife is very understanding, I could not ask for a better wife, but she is frightened .
My inlaws want my wife to divorce me, because of my health.
My family is in denial, my mother just tells me my job is to support my family and to be a man about it all.
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Re: Is your spouse and or family understanding ?

Postby sherrycatrett » Sat Nov 15, 2008 12:50 pm

I, my daughter, and her son (my grandson) all have this. I have had all the surgeries and yes fusion, I also have seizures, I can not work,I have TIA , have severe word finding problems, difficulty with speech, thinking you name it and I have a Gliosis ( just showed up on my last MRI and my NS wanders Parkinsons?); my daughter has had all the surgeries and fusion in Sept. of this year but got a staph. infection. and had to have her fusion material and bone graft material removed (the bars were left in place), she also has papilledema and pseudotumors so her eyesight is in severe jeapordy; her son has has tethered cord surgery and decompression surgery, he also has very small pseudotumors but is doing GREAT ( praise God). My daughter and I both have EDS also. dO NOT GET MY WRONG, MY DAUGHTER AND i STILL MANAGER TO DO EVERYTHING WE CAN, WE JUST DO IT TOGETHER AS WE CAN GET TO IT, IT TAKES A LOT LONGER AND WE NEED TO PLAN EVERYTHING OUT WITH LOSTS OF REST PERIODS. ( I am 56,she is 36 her son is 11). My husband is trying very hard to be on board, it is very difficult. We have been dealing with my daughters illness for years, I never knew I was sick until 2 years ago, some days are good so are bad! I had so many things happen to me so fast and so many surgeries in such a short time that I still think it hasn't all hit home to him yet. We have been married since we were in high school, so we have been through rough times, my in laws think that "if you look had enough and long enough and complain about something enough you will find someone to operate on you for anything". need i say more about them or the support they provide my husband. My daughters husband is in the military, so he is gone alot to, she also has another son, her husband is trying to cope also, but its hard if you don't "wear a bibe and are contoured" to make people understand than maybe you do look normal on the outside (thank goodness), but It's the inside that is killing you!. I call it the Quick Surgery Cure syndrom....You know everyone now a days thinks everything can be cut out and fixed with a quick surgery or laser job. So when ith stiches are out You should be ready to be normal!!!!!!!!!!!!!! Our best support has been from our Church family and from other CM families. Good luck to all God Bless you all He has Blessed Us with another new day. :D
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Re: Is your spouse and or family understanding ?

Postby sarahb » Thu Nov 20, 2008 7:46 pm

Husband doesn't want to know about it (probably because he lost his Mum at a young age after watching her go through a long painful illness) - not that that is going to happen to me. He helps more around the house, and doesn't give me grief when I need to lie down or stop what I am doing, but he won't come to the NS visits with me, and only came for the last MRI because I had sedation. He doesn't ask what is happening, and went very quiet for a while when I told him about the syrinx growth, even though I had already told him when I came out of the last MRI. My gorgeous hubby makes me laugh, especially at life :D and is dealing with it as best he can

Father and I had a huge fight not long after I was diagnosed, told me I needed to exercise more and get out in the sun, and that I was focusing too much on the diagnosis. However, now he knows the syrinx has grown, he has stopped telling me what I should be doing, however I think he is denial about the whole thing.

My kids are fantastic but worry about "their old Mum"!

Work colleagues - well they help keep me sane :-)
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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Re: Is your spouse and or family understanding ?

Postby tattoodlb1 » Tue Nov 25, 2008 8:43 am

I think my husband is reaching the end of his limit.... he told me last night that he is sick of everything about my condition and does not want to hear any more about it..... he admitted he is in denial and doesn't want to face, it, but that he is willing to help me when I need to be driven to doctor appointments. He said he does not have the brain power to keep all of the information in order. He said he is happy that I am going to TCI but glad that he is not going (my brother is going).

He said he will be happy with the diagnosis from TCI and if I need surgery, he will support that, but he does not want to hear me talk about my condition any more. I'm glad I have this forum !

So, I sit home and say nothing to him; and feel let down. I want him to know what is going on with me "just in case". I want him to have the information to tell doctors "just in case".... so if that ever happens, he should be able to articulate something!!!

Anyway, just getting this off my chest, I am going to a psych appointment now, so maybe I will vent to him, too. I feel like staying home, but I know I can't do that today.

Hugs to all of you going through this..... hopefully our light starts to shine soon!
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Is your spouse and or family understanding ?

Postby Janice » Tue Nov 25, 2008 1:54 pm

Hi Dana,

I can relate to you wanting your husband to know what's going on, "just in case". I've actually spoken to my DH about this using those exact words. He says that he's listening and wants to know, but in reality, he's not listening.

I believe that they just don't understand the concept that this is an on-going issue for us. We go through many ups and downs over the course of time. We go through many different symptoms, either all at once, or over a space of time. They really don't "get it". Sometimes I think they figure we got the on-set of symptoms, and that's it. I believe that my DH is still in denial (in a long-term way of thinking), even with everything I've gone through. Since it's not him, he simply can't relate to long-term. Unfortunately, we don't have that luxury because what we're going through each day reminds us that it is long-term. This is why it's extremely important for us to take it one day at a time. Live for today because tomorrow isn't promised to anyone.

I pretty much only mention new, or worsening, symptoms to him. He doesn't want to be involved in how this disorder effects me on a daily basis. Seriously, I've given this thought and if the situation were reversed I think it would get kind of old hearing every single day what's happening. I know I'd be understanding and caring of what he'd be going through, I just don't know how my patience would be for hearing what's happening all the time. I get tired of it myself, and I'm the one dealing with it. I just want it all to be over. That's not going to happen. So, I only mention the things I said above because he knows what's happening up to that point. I had to think of it as, "misery loves company". I don't want my family to be miserable because I'm suffering. I want us all to have a life and be happy with that life. I want to smile, instead of looking, and being, miserable, and not let this condition get the best of me.

I think it's important for you to focus on the positive. Focus on the help that he provides, rather than the lack of understanding this condition. It's difficult for doctors to understand it all. It's hard to think about something you don't understand. Stay positive and don't get discouraged with issues surrounding this illness. Be happy in knowing that your husband loves you and is there for you (in his way).

Take care, (((((hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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Re: Is your spouse and or family understanding ?

Postby tattoodlb1 » Mon Dec 01, 2008 1:18 pm

Oh Janice
Once again you are like an angel who understands!!! What a lovely and thoughtful response.... warm hugs to you! :)

I know being positive and focusing on the positive things is important, but somehow it seems that all of my positive energy is used trying to feel better; trying to make this pain feel "less" if that is possible. Trying to will it away.

I clicked the link from Roz on WIChiari Institute and found a print out "For doctors on the Go" and I read it and was shocked and then sent further into misery. Red Flag symptoms for Chiari patients (which I have not been diagnosed with) are exactly what I have been going through the past month:
Difficulty breathing, wildly fluctuating heart rate and choking/swallowing issues.... and I brought all of these to my PCP and was dismissed on every complaint. :twisted:

So, I wait for my TCI appointment and hope that I make it that long.

On a side note, I got your requests on FaceBook, but I don't like to use the cute little programs because they use your sign up information for their own purposes. I appreciate the thought and I'm not trying to be rude.

Thank you again!
Dana
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Is your spouse and or family understanding ?

Postby Janice » Mon Dec 01, 2008 2:00 pm

Hi Dana,

I totally understand about Facebook, don't give a second thought. :) Thank you very much for your kind words.

Please try not to be discouraged. I have some of the "red flag" CM symptoms also, without having a dx of CM. For my breathing problems, I've been referred to a lung specialist. Unfortunately, every name they've given me is out of network. Hopefully, they will come up an in network specialist soon. Either way, our insurance changes again in January so I'll check these docs against the new plan. At least it isn't a constant problem now, after 3 months of suffering it tapered down to intermittent. For the swallowing difficulty, they sent me to the ENT doc who says, based on the scope, there's nothing going on in my throat that would indicate a problem. I'm supposed to chew my food (small bites) thoroughly before swallowing and drink in sips, even water which is my drink of choice. So far, so good except for a few mornings where I've woken up choking. Not sure what's going on with that, it's recent. I only experience changes in heart rate when I lay down. It's rapid for a while and then it slows down to normal.

I think you're doing the best thing in making sure your PCP is aware of everything going on with you. Perhaps speaking with your PCP about a referral to the appropriate specialist is the next step. Although your PCP may choose to ignore these concerning issues, letting her know that it's still of importance to you might get the ball rolling. At least, I pray it does. Don't let your PCP drop the ball on these symptoms because they are obviously worth checking in to. Can you self-refer with your health plan? If so, just ask your PCP which type of specialist you would need to see for each issue. If all else fails, it may be time to seek out the services of a different PCP. I loved my previous PCP but when I was struggling with the breathing problem, I didn't feel that she was concerning enough (can't think of the word I'm looking for). I didn't feel that she was doing all she could to help me through this, so I requested a change to a PCP I saw in her absense once and it's proved to be a great switch.

Maybe you'll be able to get in to see a specialists before your TCI appointment. Thrive to go forward, I know how hard this is but we must. Stay positive and know that you will make it to TCI. I pray they will be able to help you with exact diagnosing and adequate treatment options. My NS has advised me to see whatever specialists are required and continue with PM, until such time that surgery is recommended, or unavoidable.

Take care, you're in my thoughts and prayers. (((((hugs)))))

P.S. That is a great link Roz has provided.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Is your spouse and or family understanding ?

Postby tattoodlb1 » Tue Dec 02, 2008 9:33 am

Hi, Good Morning

I am going to see a NL today for possible Botox injections to my severe neck muscle spasm. I saw this guy in April this year who dismissed me as having a shoulder impingement (he did not know of my sryinx at that time, since he did a shoulder MRI instead of cervical).... so I am just going to see what he says about the referral from my PM doctor (who does not do botox injections in his office).

I do not have high hopes of him believing of syrinx causing any problems, so hopefully he will do the botox without too much of an issue. I am not sure I want him to tell me anything else about anything else... since I know of all the other bad doctors I've seen. I am only seeing this one again for the specific purpose of injections, and that is all. Unless he is of the mindeset that syringes are dangerous, etc. I will keep an open mind and I will keep you informed.

The only reason I keep pushing on is that I know there is something wrong with me that no physician is getting... or even caring if they get it or not, I feel they pat themselves on the back when they prescribe a pill that "works" and the patient is therefore "cured".... :evil:

I'm sure there are a lot of us out there that feel the same way.

PS> Does this site have a chat feature? I cannot find it....I did see it mentioned that there is a 24 hour chat here.... ? Any suggestions?
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Is your spouse and or family understanding ?

Postby Janice » Tue Dec 02, 2008 12:28 pm

I wish you the best and I hope the injection works. There is a chat feature, I forget where (on the main page) I found it, but it's there.

Take care and keep us posted. (((((hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Is your spouse and or family understanding ?

Postby tattoodlb1 » Wed Dec 03, 2008 10:54 am

Hi,
The NL that I saw before was so different, He seemed genuinely caring and concerned about me this time!!!! He was kind, and answered all of my questions! :D He said having a syrinx is rare and he is not sure what will work for this pain.

He did say that the Botox may not help due to the syrinx; he has given many, many injections, but never to anyone with a syrinx. I told him I want to try anything to see if I can get rid of this pain.

He is going to see if he can get approval of Ins co; and he will let me know.

I was pleasantly surprised that he was so nice!!!! :D I am also thrilled that he proved that he could be a great doctor! I may have a keeper here! I know I shouldn't get all excited so we'll see how it goes with him. I am glad I was mature enough to have an open mind at this visit. I was prepared to be a real jerk! I'm glad I wasn't because that is not me.
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Is your spouse and or family understanding ?

Postby Janice » Wed Dec 03, 2008 1:06 pm

That's awesome, Dana!! We need a supportive NL on our side. When surgery isn't the answer, the NS doesn't want to get involved (well, not all of them). It's really important to have a NL managing your neurological issues until surgery is required. I hope this guy is a keeper for you.

You're right, it does pay to keep an open mind. You were yourself and it worked to your advantage. Now we pray your ins. co. approves the injection.

Take care, (((((hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

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