I don’t know how much to tell my husband

Jamie
You have a very full plate my love. You are still healing, the stress of pregnancy does strange things to a body that ya may not even realize (even if you have been thru it before, each baby brings new things), and hormones play a large part in how our bodies react after GBS. I asked Dr. Parry about that one because my monthly leaves me feeling physically awful. He said all sorts of out hormones can make our residuals flare up. And ya got a lot of those going on right now preparing for your new angel. Also, the breathing thing sounds like what I go thru. I was so bad a couple of months ago, I honestly thought something was seriously wrong with me. Anxiety. I had no idea until I did a bunch of research and went to see a dr. Bad thing is, he doesnt want to refill my Rx for xanax because it is addictive. But it is the only thing that has given me relief and sleep (I only take one at night and rarely during the day unless it is a particularly bad day). Also remember, the baby is pressing your diaphragm up and it causes lung capacity to decline until after birth. Add anxiety over wanting to talk to your hubby, worrying about how he is dealing with things, worrying about playing your part, your contributions, abilities, etc and ya got a large case of anxiety lady. Our nerves are still off kilter so they are more sensitive to stress hormones which makes the anxiety worse.
As for telling your hubby what you are dealing with. I asked my own about it, what he thought ya should do. And he said unless the guy is a total jerk, he isnt going to explode under pressure and leave. A sit down heart to heart for both of you sounds like a good idea. Together you can overcome many difficult things. On your own together, those same things seem even larger and scarier. And we dont really know what our spouse thinks unless we ask for their honesty. He may need to vent too…maybe not emotionally (although I have learned a good deep long crying jag helps immensely!) if he is not that way…but he may have some things he is afraid to ‘burden’ you with as well. Men are fixers, and feel helpless when they cant make it all better. They seem to prefer ignoring things they cant fix, but it doesnt mean they dont want to know the truth. I know I bore my own with how I feel (been told I am too ‘in touch’ with my self and ‘dwell’ on my physical feelings. I just know being that way has kept me out of serious situations and besides knowing myself is a good thing I think), but he is supportive and helps when he can even if it is to fix dinner when I am not up to doing so. I work from home. Trying right now to get two different websites up and running for my own t shirt designs. He has his own site as well. My sites are waiting and I am twiddling my thumbs and considering an outside job. Knowing I couldnt physically stick it out because I dont know if tomorrow will be a good day or a bad day for me. Working from home is my best option. I am home for the kids, I make my own hours, I work as much or as little as I am able, and get to combine my creativity and enjoyment of the internet.
Photography can make ya some money. I do it as a hobby because I dont know if anyone would be willing to pay for any of my work because it is so random and not a “specialty” like portraits or weddings or such. If you learn your tools, learn to post process (I use photoshop cs3), and find a nitch, you can do it. You can even set up a site online to sell your work or sell framed prints in small stores in town. Your teaching idea is neat. Using your knowledge to teach others at your own pace may be a great option for you. I am also considering a research job. I love doing research, and can find info on just about anything even when friends or family have tried and cant. I know that people pay other people to do research for them. Might be kinda interesting and what a way to learn new things! Just need to reseach how to become a researcher :D. There are a lot of possibilities for ya! Do you bake? You could sell your baked goods (recently did a bit of research about that myself for homemade salsa and guacamole) or other homemade gifts. I make these on occassion (minus the flowers)
[IMG]http://farm3.static.flickr.com/2007/2239524227_75b2e557cb.jpg[/IMG] and I enjoy making crib sized baby blankets. I made a couple for my daughter that had Pooh and friends on them. Used t shirts and such that I cut the designs out of, quilted around them each, put a thick layer of warm batting and a backing on it and she still has them 9 years later. I love making them. Would someone pay me for one? I dunno never tried. Painting, drawing, writing, are all other options. There is so much you could do sweetie to help with the finances and feel better about your place in your family if it would make you feel better and make the situation for your family better. I want to do the same, but havent been able to do so just yet. A little here and there, but not on the scale I would like *sigh*.
Remember, keep the lines of communication open with hubby and family because you need that. He needs that. He may turn his fix it instincts to something else, but it is only because he cant tinker with you and is unsure as to what he should do. He loves you and his concern for your well being is deeper than ya realize. If you feel more comfortable writing him a letter, do that. As for this being Your Site…well we welcome him too! He is part of our family too and we know how important caregivers are and we appreciate them and want to help them get thru this too.

Better get to bed over here.

BIG HUGS!!
Lori

Hi Jamie

I had to go back and read over your initial post. I had never heard of PCB variant so i just googles it. I thought it sounded like Miller Fisher and from what i have read quickly it looks like there is significant overlap with PCB/MFG/GBS

When i read you post originally (and i must apologise for not replying at the time) i wondered why they wouldnt treat you while you are pregnant. The main tests for GBS are emg (cant see how would affect pregnancy but i never had one) and spinal tap – as a spinal tap is basically the same as an epidural which is used in childbirth i cant see why this would be a problem. from what i read there is a certain antibody that specifically points to MF or PCB. I know thats how they knew i had MF variant. And if it is a variant of GBS, why wouldnt they try and treat it now and not after you have the baby? Is there any contraindication for plamsa or IVIG while pregnant? I would have thought it would be important to get you to best shape possible prior to the arrival of bub. Also, is there a chronic form of PCB like CIDP? Sorry, i am asking more questions than i am answering lol.

As for your hubby, i can only go by what i know of mine. He is a typical male who bottles everything … and then the smallest thing will cause the top to blow lol. I know my illness was hard on him as we have 3 kids and i was in hospital 100km away. But it took every ounce of effort to concentrate on getting better and even if it sounds selfish, i couldnt worry about him, i had to worry about me. We are so used to worrying about our families that it is hard to let go. I am not saying that you shouldnt care about him and how this ordeal is affecting him, but you need to remember that you are the one who needs TLC at the moment.

you definitely need to talk to someone about how you are feeling. I think this forum is great for that because you can say whatever you need to and no one is going to judge you or think you are overreacting or exaggerating your physical symptoms. And there is sure to be someone who will say “i know exactly what you are going through”. I dont know if there is a person here who didnt have “down” days during their illness- i think that is completely normal for what you are going through. of course being pregnant wouldnt help – that is excuse enough for being emotional lol.

Your sense of humour shines through in your posts … i’m sure you havent lost any of your “spunk” despite the “sick lady” haircut (believe me long hair and being bedridden in icu is not a good look)

Please do not hesitate to come on here and rant and rave and vent whenever you need to … and dont worry no one thinks any less of your husband, he sounds like a typical male to me!

Jamie, What’s left to say…Lori and Yolande had such words of wisdom from 2 different perspectives. That’s what you get when you come to this site full of caring and knowlegable people.
I had to laugh at your comment on the ‘sick lady hair cut’. I just did that!
Couldn’t keep my arms above my head long enough for the hair dryer, let alone hold a curling iron up after that. Unfortunately, mine is not exactly the best “do” for me. Glad to hear yours is still cute and working for you.
But I am so glad I did it.

Sharing whats going on with me – with my husband is very difficult for me as well. He is a great provider, but being a guy, he handles things differently.
Keep the communication open, it is a must. A good lead in to the conversation is a short letter or maybe a card asking for time to yourselves so you can talk. Anything to get the ball rolling, you need that.

When is the baby due? Take care of yourself,

Good morning Jamie.
You have me close to tears reading your words of pain ,fear, lonleyness,and love. My GBS was mild and I was blessed but the attitude of your neuroligist makes my blood boil. I wish we had the power to put people like him with the $ signs for eyes out of business. and they really have no compassion for the patient.I wish I could send you my doctor. I look at your husband as I do my wife he and she is doing the best they know how. Just like you and I and all the others. We are doing the best we can. When I was in the hospital I gave up and said to my God (I am yours. I can handle no more. here do with me as you will) In a matter of less than an hour I was at peace and felt calminess and knew I was going to be ok. Jamie for myself I would get rid of the doctor you have if I had a choice. I feel something could have been done sooner. I have you your family and husband in my prayers and remember. above all else BE GOOD TO JAMIE she is a beautiful woman and she is going to be ok. and you will never be alone. (Your friend Steve)

Jamie…The ladies here have said it all, honey. I can’t think of much more to add except….try to get a new neurologist. I train people around crisis and what it is and we do a 15 second test…you are right. In crisis, 15 seconds is forever and I can not see this (not being able to inhale) being good for the baby if it happens on a continuing basis.

As to talking with your husband, I think you should try to tell him everything. I am sure he wants to know, but probably feels helpless because he doesn’t know what you want from him or how he can fix or make it better. It is important to remember men are linear thinkers. Things for them are black and white. Women on the other hand are more global in their thinking and process info in a different way. Neither way is good or bad, together the two processes are very helpful. With GBS, there are so many variables and everyone here can tell you there are no black and white issues with it. So keeping that in mind, can you see why it would be difficult for your hubby to fully understand when you can’t give him a concrete answer? It can also help you though as you talk to him because you then can be very concrete in telling him what you want/need from him or others without getting into a power struggle.

I do understand your fatigue. Being pregnant can do that to anyone but add in GBS….Yikes!!! I had four little kids at the time I was sick. Man it was a challenge. We ended up hiring a caregiver for the kids so I didn’t have to worry about them. It put us in the hole financially but my inlaws stepped up to the plate and lent us some money (which they later refused to let us repay) and other family members came and cleaned my house, looked after the garden, etc. I would never feel guilty, looking back, for having accepted that help. I now pay it forward and would do that and more for others who need our help. Keep the faith my dear.

My heart goes out to you and I will say a daily prayer that you get through this time with God’s grace and love.

It occurred to me that I was having those breathing episodes when I try to fall asleep. I would suddenly realize I wasnt inhaling! Of course that set up an instant anxiety attack and made it impossible to get everything back in sync so I panicked even more. Which is why I was terrified of ever falling asleep while I was sick….afraid I would stop breathing and it would be too late for anyone to realize it. It happens on occassion now, but not nearly as often but then again I am sneaking up on my 2nd anniversary so things have come a long way for me in that time. I never talked to the doctor about it mainly because the general practice guy has no experience with GBS and wants me to see a neuro (which I cant afford since I no longer have insurance and when I tried to get insurance, the underwriters wont touch me for another year because of the GBS. I can pay $350 a month with a different type of insurance, but I dont have that much extra! So I dunno what to do. I may end up turning to the state for medicare or something so I can see that therapist my dr is threatening me with and a neuro too *sigh*). Anyhow, I am rambling now.
I do agree that a different dr sounds like a good choice. I am sure the GBS foundation would have a good one in your area they could suggest. Why suffer or put the baby in stress because of what you are dealing with if there is someone who can help.

Hugs and prayers!

Jamie,
At the bottom of your post you said “I’m finally laughing and I’ve got all of this out enough that I’m done with my pitty party”.
I believe we all have a pitty party for ourselves.
I do hope you feel better after getting it all out but sweetie, your plate is over flowing and if that husband is the rare breed you say he is you need to talk to each other. Sounds like his plate is pretty full. You want so badly to talk to your husband about this. Give it a try, he may open up to you also.
Stress is not good for you or the baby.
There is a forum for caregivers that would help your husband understand a lot more of what you and he are both going through.
Bless you,
Shirley

Hi Jamie: I am so impressed by the wisdom shown by those who answered your question-good advice all around. Just from a male’s perspective, it is, as some have said, so important to make it concrete. Your husband sounds like the real thing so tell him how you feel, but also let him know he is not responsible for making you better. Men get guilty when they hear their wives suffering and they can’t fix it and make it all better-rather than face such failure they might refuse to face it at all. But if you let him know he is not responsible for taking all the pain away and making you feel good, but that there are things he can do-maybe just sit with you when you rest or do whatever you think of that is concrete and doable. I know sometimes I just want my wife to hear my pain so I know I am not alone, but don’t want her to fix anything. Anyway, communication is always the best choice in marriages and if he can’t deal directly with the emotions just give him a way to deal with them that helps you and that he can handle. You sure have a full plate to deal with and I wish you the best. Jeff

Jeff you said it wonderfully! I am going to make sure my own hubby knows this. I am so glad you posted your info and advice. I never thought of telling him I just need him to hear my feelings, not take resposibility for them. And that goes for all sorts of things, not just being sick. Sometimes we just need our men to listen, not fix it. And, you are right, they need to know that we dont always want or need them to make it all better.

Thanks!

Jamie, Go to the U of M!!! Jerimy highly recommended his neuro to me from there and I think very highly of him. It won’t hurt to try it anyway. You need someone to tell you more than what you have been told by your neuro. Let us know what happens.
As for talking to your hubby, do it! I just had my 19th aniversary tuesday, all these years have been a struggle for us because of my health issues, we couldn’t have made it this long if we didn’t talk and support each other. Yes there was/are times when I don’t feel like talking because I don’t like to keep bringing this health problem to the front of our lives, but eventually it does come out in one form or another. I have found if I bring it up, He listens alittle longer. Although it does take a few weeks to get everything I want to say out, either we get side tracked or I just lose my thoughts, mainly the later:rolleyes: . I wish you luck and strength. Take care.

Jamie, you ended your post with ‘so overall, a good day’. If that was a good day, I’d hate to see your bad day!
For you, for that precious little baby and for your family, please pursue the
U of M.
I am finally going to a research hosp. next week and just having the appointment has taken such a load off my mind. It’s like I can quit worrying for a while because somebody else will be taking charge. Please go for your self…you need it both physically and mentally.

Hope today is even better than your previous “good day”.

Jamie,

Go to U of M and see Dr. Teener. It may take a while to get into to see him so start now to get an appointment. He is a wonderful, kind and very knowledge nuerologist and is experienced with GBS. When my daughter experienced her second go around we tried desperately to get her transferred to U of M. Our efforts failed but we did get an appointment after she was released. As Brandy’s initial onset was while we were in England and she was only 14, when we returned she was seen and treated by a pediatric nuerologist. 8 years later, at 22 her pediatric nuerologist had retired so we turned to the this wonderful board and Jerimy. Dr Teener is patient, understanding and extremely knowledgable doctor. Brandy was well on her path of recovery by the time her appointment rolled around but Dr. Teener put our minds at ease. If you need his number, send me an email. Trust me I have laminated his card. I hope and pray that my daughter never has to see him again, but if needed, I know exactly where we will go………………..straight to U of M. Feel free to email either my daughter or I if we can be of any help to you. I as a caregiver and my daughter as a GBSer.
Take care of yourself Jamie and know that you and your family are in our thoughts and prayers.
~Maggie~

Thats who I see at U of M also. go for it Jamie!:D

Hello Jamie. I had first gone to Beumont hospital.. Has a good reputation, but couldnt figure what was wrong . Finaly my wife convinced me to go to U of M emergency. Waited 6 hours in the er and finaly saw a doc. It was during football season and all the near dead druncks took pryority!!!!. Any way they diagnost me right away and ordered IVIG and it slowed it down to to just below my shoulders. While in rehab at the horpital (5 weeks total at u of m ) My nurse told me there was another nurse that worked there ,that was pregnant ,and came through and was working today.I dont know if just showing up in the Er and get in that way would work for you.You might consider that if your ins would pay.
Ron

Jamie, I truely feel for you. I don’t have GBS, but I do have CIDP, APS, & CVID along with other ailments. I am also only 31 years old and married to a wonderful man. I understand when you don’t want your husband to get freaked out by how you’re feeling…but you can’t be expected to take all of this on all by yourself. Yeah, I used to work a full time job and go to school at the same time, now I can’t do anything. I’m doing good if I can make it to all of my doctor appointments. I’m lucky because my husband has a job where he can schedule his hours around my doctors so he can go with me. He is very involved and wants it that way.
Although, sometimes I do get really depressed about being sick and I feel bad about telling him about it because we may be having money problems already, and I feel bad about putting something else on him.(I also can’t contribute financialy) I think that may be where you are coming from. But when I do get that way, and start to keep things to myself…I just feel worse. Talking to a therapist helps me a lot also. If you need someone to talk to..my e-mail is [email]HunnyPoohM@aol.com[/email] …We just seem to have a lot in common. I hope you feel better. My thoughts and prayers are with you. -Amy-

This is what you need to do.

1) Find a new neurologist ASAP.

2) When you have the breathing episodes go to the ER right away. Even if they stop the ER should take you seriously. They might even consider doing the tests that the neuro is refusing to do.

3) Write down how you are feeling in a journal EVERY day…sometimes more than that if needed. It will help you deal with it better. And you might even be able to show it to your husband. I find it’s always easier to write my feelings out instead of actually telling them to people.

4) Discuss your hormones with your OBGYN. There is some evidence that depression before or during pregnancy can lead to post partum depression. There are meds that the dr can give you NOW to make sure you don’t deal with it later. (I’m suggesting this because it is SO stressful to have GBS in itself. It’s even more stressful to have something wrong with you & have dr’s completely ignore what you are saying to them. And then to top it off you can’t really talk to your husband about what is going on. I think it would be wise to nip ANY potential problem in the bud. I’m not saying you are depressed or will get post-partum depression.)

5) Call U of M & tell them your situation. Let them know that your dr isn’t listening to you, you have no firm diagnosis yet, and your symptoms are progressing & starting to affect your breathing. Hopefully someone there will be able to help you.

Good luck,
Kelly