-
AuthorPosts
-
Hockey, hi from a fellow Canadian.
First, I am confused about "the guilt of being away" after RAI. For how long are you planning to stay away? I was away for 2 days from my very small kids (had 10mci). On return, just tried not to hug them too much for a couple more days, and then everything returned to normal. If anything, those 2 days away felt like a vacation. With a baby and a toddler, I hadn’t gotten a break for 3 years prior.
It was a break from my husband, too, when I could reflect on why I had so much anger at him. If I started writing down the manifestations of my anger, it would come out a mental case. That was going on for 2 years prior to my diagnosis. Throwing things, breaking things… It was unreal, a shameful black hole of my life. Some people get Graves rages more than anxiety.
… And in that case, RAI helps. With my thyroid gone (like a mean monster alien sitting inside of me), my capacity for anger fizzled.
In the meantime, (if only I knew this simple trick before), when you are angry and screaming at your loved ones, scream something along the lines of: "I DON’T KNOW WHY I AM DOING THIS! I STILL LOVE YOU! I THINK I NEED SOME TIME BY MYSELF!"
Hi,
My wife was diagnosed with GD two years ago. Her numbers have been back inside the box for more than a year and a half. She is divorcing me claiming irreconcilable differences. The thing that bewilders me the most is her flat line attitude / anger towards me. The only conversation we can have is about the divorce and terms there of. If I disagree with something or try to fight it out comes the rage. Her numbers have been in check for over a year and a half, from the things that I read GD shouldn’t be a factor anymore. Then where is all this anger coming from? I have concluded that GD never really caused anything but it magnifies everything. But that’s just my opinion. Perhaps I am just trying to hide my faults from the powerful GD microscope.
Kam
Hello,
Just wondering if anyone has any words of wisdom as to how to get over the anger of having Graves, and the denial that I am sick? In some ways I don’t feel like I’m sick, but I guess the blood test, and uptake test #s don’t lie.
How do you get over the guilt of being away from your family for RAI treatment (essentially the only option as I don’t want to go under the knife, although I don’t want to do the RAI either) and I am allergic to ATDs.
How do you get over the feeling that this is just a crap shoot – trading one disease for another, and that it will be YEARS before life returns to ‘normal’ – whatever that is supposed to be. No one really knows what the outcome will be – other than going hypo, and then there are all the issues of trying to get regulated on a supplement. Then, once the supplement seems to be regulated, another life changing event will come along (menopause? death of a loved one?) that will totally throw off your numbers again, and you will have to start ALL over again.
What do you do in the meantime, until things are ‘normal’ so that you don’t push away any/everone who cares for you?
I understand how you feel, I was allergic to ATDs as well. Graves, sucks! and we are all stuck with it for the rest of our lives; I hear.
RAI is not so bad, I myself had a bad reaction to the treatment, but was fine a few days later. No weight gain yet, it has been over three weeks, I eat like a bird. I have other problems caused by the Graves, it has attacked my joints. They are unsure if I will every be able to be active like I use to be. It took too long for them to test me. Try asking your doctor for some medication to calm you down, it worked for me. Again as for the RAI, I had my whole bed to myself for three nights. That was great!
” title=”Very Happy” /> only the doggies could be around me, we all enjoyed the extra room. I really do not think you will ever really get over te anger, I still have it, I want someone to blame. I just live, and do my best to be happy with myself. I hope you can take care of yourself, and try to be happy.Julie
Thanks for the replies – nice to hear from another Canadian too!!
The sad thing is – I’m not sure what ‘happy’ is anymore.
I’ve always tried to be a pleaser – make sure everyone else is happy/looked after before taking care of me … so, what really makes ME happy?? I don’t know.
As for anger towards my husband – yes, that’s there. Often I think he’s an idiot … but then again, I feel as though he is talking to me as though I am 5! Even though he doesn’t mean to make me feel belittled, dumb etc. (at least I don’t think he really intends to) – he does, and it makes me mad – but if/when I try to explain it to him, he just doesn’t ‘get’ it, he doesn’t ‘get’ me. Then he tries to give me space and the space just creates a bigger distance, and so on and so forth.
How do you not end up being close to your kids after an absence? … mine just wouldn’t understand why I can’t read them a book, snuggle with them in bed, carry them around post RAI … so, I’m waiting longer (10 days is my goal with 8 days being my minimum) – the 8th day return would be based on guidelines I found from one of the hospitals nearby (not the one where I would be getting the RAI, but one that is still close).
The only thing that I was really angry about was not being able to run. Life pretty much continued as usual. But since running was a big part of my life, that was tough.
I was actually happy when told I had Graves’- since I thought I was going crazy with this heartbeat thing. I remember saying to the doctor, "Oh, good! I’m not crazy!!! So, you’ll fix me up quick then, right???" haha, little did I understand at that point that NOTHING is QUICK with this disease. Anyways, all along I just kept being thankful that it was "ONLY" Graves’ cause after all, there are things that could be much, much, worse. And also was very thankful it was JUST ME and not one of my kids being sick. Mostly the parts that upset me the most are that I feel like things COULD have gone quicker- I could have had my RAI scheduled faster, the doctor could be more attentive to returning my calls, etc. I am now 2 months since RAI and had my third set of labs drawn yesterday- I expect to be hypo this time- but of course, the doctor has not returned my call today. So, I just keep going, cause after all- what else can we do???
Oh, and I had 7.3 mci and just wasn’t aloud to sleep with anyone for 2 or 3 nights. Have a 7 y.o. and didn’t have any restrictions other than to keep a bit of distance between us the first few days- like we could still hug, and be in the same room, I just shouldn’t sit next to him on the couch for hours on end.
Good luck. It does get better, I promise.
Hockey,
1st, though, how did elf know you are from Canada?
Sometimes we get so far away from our "real" self that we truly don’t remember what it felt like to be OK, remembered what makes us happy, what really makes us sad and/or angry. That may take some intense looking inside, writing it down, maybe even talking to someone outside the circle.
Many times, the hardest person to talk to is our spouse, because we can’t stay focused on the real subject and go "off" into those places we don’t want to go, but can’t seem to stop ourselves from going there. Usually the best times to have those conversations is when there is nothing/little else going on, when you are both rested (so not after work, or a long day taking care of children). Saturday mornings are good, and someone else must take care of the children. (Grandparents are a real asset at this point, or hire a baby sitter to take them to Chuckie Cheeses–you need TIME) Take notes, both of you, get back to the subject when one or the other is shifting away.
I have been talked to like a child, and in retrosperct, it was either because I was acting like one, or they didn’t know how else to talk to me except in easy words and short sentences. One time my husband and I were really talking, and we agreed that the next time he asked me if I had had my levels checked, we would STOP. I would write the topic of the "discussion" on the calendar (so I wouldn’t forget), and I would have my !@#U(#$RU()^&$*! levels checked. The rest of the agreement was that when they came back as normal, we would resume the discussion. The problem was: they NEVER came back normal! Much as I hated to admit it, he (and others) could see my behavior and conclude that my levels needed adjustingmuch sooner than I could.
Angry! Sure. Does it do any good? Seldom, unless it moves you off the place where you are stuck.
Your question: What do you do in the meantime, until things are ‘normal’ so that you don’t push away any/everone who cares for you? is the most telling. That is the fear (and sometimes the reality) of most every Graves’ patient I have ever met. The answer varies. See a counselor, talk to other Graves’ patients, start a support group, gedt information from reliable sources, stay in touch with this bulletin board, beat a phone book with a rubber hose…the list goes on. TRUST is a major concern…getting it, keeping it, getting it back.
Lastly, you do not have to be away from your children for ten days. Secondly, if they are as small as they sound, they will not remember the two days that Daddy read them their bedtime stories.
Take care,
Thanks for your words of wisdom Nancy. What a good idea about the discussion note on the calendar. If we did the ‘discussion’ thing on the calendar – I would need a MUCH BIGGER calendar than I currently have (or else I would need to write very small). We could easily have ‘discussions’ about everything.
As for how elf knew I was from Canada – guess she just noticed it in a previous post. I think one tends to take notice when someone is from the same area.
My endo called me this evening at 7:30 to see what I wanted to do – go ahead with RAI? Guess I can’t complain too much about the guy as others have written they wait quite a while to get test results etc. I just wish our personalities didn’t clash so much – maybe if he were more of a jock/coach(?) than a walking encyclopedia.
So – I’ve decided that I will go ahead with RAI – who knows. I can’t say I’m more optomistic, but I’m a bit between a rock & a hard place.
Does anyone know what a ‘typical’ dose of RAI is? My endo suggested it will be between 15-18 mci, but that the final number will be up to the nuclear medicine guys. Is that high?
I’m hoping that by doing the RAI it will help me figure things out. My endo said he wants a blood test 1 wk after the RAI (and then weekly – what a pain, at lease in Canada I don’t have to pay for it!), I told him I will be away for 10 days, so it will be day#11 before it’s done – he said he can live with that and to enjoy my ‘vacation’ …. well, it won’t be a vacation, but maybe it is a long awaited rest that I have never thought I needed …. does anyone have any good movie suggestions – I haven’t seen a movie in 5 years (well, I guess I did see Marley & Me a few weeks ago, but that’s the only one)!
Thank you for your support … I will still need it in the days/weeks/months ahead.
Your RAI does will be based on your uptake test results and your personal disease details such as if you have a goiter etc.. I had 15 millicuries. My uptake was around 35-40% at the time I had my RAI. A year earlier it was around 70% so it might have been a little lower dose of RAI. You want to make sure that you are getting enough to try and make sure the job is done the first time. SKI on this board has lots of posts about RAI and how her first dose didn’t work. She is one of the facilitators. Her name will show up as green. You can click on her name and see all of her posts or search for RAI. It’s worth your time to try and read back in the posts here. It might answer a lot of your questions or help you think of ones that you need to ask when you go see the nuclear medicine folks. Ask for written answers, paperwork to show you what you need to do and not do and for how long. It will be hard to remember since it can be a really emotional experience for some. I was just worried that my legs wouldn’t work to take me into the hospital. I had waited so long to have the treatment that I wanted I wasn’t really sure I would make it through it. I had had it denied to me the year before because my levels were "too" normal.
Now that you’ve made a decision it should be a relief on some levels. I wish you luck with your treatment. Let us know how it goes.
ewmb
Yes – I know that (read previous posts) I don’t want to have to go through this twice .. once is MORE than enough for me. My uptake was 47% so maybe that’s why he suggested 15-18, but then again, he said it was only a guess.
What is the impact of a higher dose on your radioactivity? I’m guessing I will be radioactive for longer – but by how much?
So – I’m asking my husband if there are things I can make ahead of time and freeze so that I know the kids are eating healthy while I am away … he said no, we’ll go grocery shopping .. but I NEED to go shopping before I have the RAI as I am going to a cottage where there is NO food – and he knows this. I said there is NO WAY I can be walking around a grocery store on the day I get RAI or even the day after. Plus I was hoping that I could have some control over what the kdis are eating as I’m sure he will feed them pasta for 50% of the time & they will get NO veggies etc. Anyhow, he keeps acting as though this is no big deal – his comments are ‘its a little bit of radiation’ – and he’s seen the list of precautions I need to take, he’s been around while I’ve agonized over the decision of what to do right from day 1 (5 years ago!) – so not sure why he can’t seem to ‘get’ this is a big deal for me, one that I really don’t want to do, but feel as though it is necessary to try and become a little more stable in my moods. I wish I had a punching bag right now.
Hockey,I am in a rush (as usual). I will post more later but wanted to comment about your dh and his thinking.
He is worried! He just doesn’t show it and he shouldn’t be. Men are NOT women, we nurture! They conquer! He needs to be able to take care of those kids and his brain is saying everything will be fine because if his brain doesn’t say that you will have a panicked husband to worry about when you are away. He doesn’t want you to worry and he also doesn’t want to worry because the task at hand is taking care of the kids while you aren’t home. At least in his mind it is and also "i hope my wife is ok so she can come home soon". If he hasn’t gone through it himself he will NEVER understand and don’t fault him for that. Just pray and be thankful it’s only one of you and not both of you going through something like this so that the other can watch the kids while the other is sick.
yes it seems harsh if you look at his thinking…. but men are not wired the same as we are.
I am concerned that you are going away though. Is no one else going to be with you? I don’t like that you will be without anyone around during this time. Can you just seclude yourself in the house for that time in a separate room. Make sure he sleeps in a kids room or on the sofa. I know a member here just did that if i recall right.
I’ll give some suggestions later about food for you to buy.
I probably agonized, too, about leaving 2 kids (one still needing formula) for 2 days. In fact I remember typing a schedule for him, of our normal day (different nap times, feedings, playtime, bath time…). It came out as 2 pages! I taped it on the wall but when I came home I knew the schedule wasn’t looked at, and my guidelines were not followed.
Since then, I realized I have to let go at times. Our husbands are not complete morons… They may feed the kids bologna and ramen noodles for a couple of days, — but this is not the end of the world. I think I am getting a glimpse of myself 4 years ago…. How particularly uptight I felt about healthy food and schedule…. I think a lot of it was not so much about the food, but about control…. As usually, type-As get Graves… Everything should be under control, and multi-tasking. I spent years un-winding from that. Learning to let go, and being surprised that the world didn’t fall apart in the absence of my control… And you know what, my son now eats only hot dogs, bologna, and ramen noodles, and refuses anything else. And I am letting him. Being a normal boy, I guess. On one hand, I am grateful that there is no headache with him about fancy meals. On the other hand, I think it’s temporary and he will acquire taste for better food.
Oh yes, when I came back after 2 days after RAI, my kids were covered with oil (greasy hair) – children bath oil, that is, my hubby washed them with it instead of soap. The bathtub was oily. The place was a mess. My hubby was beaming from ear to ear, expecting praises from me about how brave and reliable he was minding the kids by himself, for 2 days. I had mixed feelings.
But we, the Graves people, need to let go, that is the most important. That’s what contributed to our Graves to start with. Taking too much upon ourselves, thinking that we are the rock the earth is standing on (thinking of everybody before ourselves), and not handling stress easier than others.
Actually, when I was in the middle of my Graves rages, I also felt, concurrently, that I needed to have a place away from everybody. I sensed that it could have helped me. I imagined a clean airy room, the meditation kind of place, where I could be all by myself, meditating or not, but I felt it would help me to calm down. I was grateful for the 2 days away just for that reason alone.
ELF….I’m still cracking up at "our husbands aren’t morons" ROFL ROFL ROFL ROFL!!!!! I’m not saying mine is, in fact he is quite inteligent. I still have to laugh at that comment though!!!!!!
If you have to leave then make sure you do what is best for you.
Buy;
Plastic forks,knives,spoons
Paper products
Tissues(seriously if you don’t usually have them buy them anyway, you might find yourself crying for no good reason and paper towels are just to harsh!)
Box of crackers
Cheese(to put on crackers so you can snack when you aren’t feeling very well)
Soup stock(chicken soup in a can) (your tummy might not be up to par so soups are good)
Bread TWO loaves because you might only be able to eat bread due to tummy being upset.(toast is good for tummies that aren’t feeling very nice)
Jelly (yes jelly, when you tummy isn’t being friendly some toast and jelly is good)
Ham(cooked sliced ham at the store will last a week in the fridge so you can make grilled cheese sandwiches with ham on them if you are feeling up to it)
Bottled waters, small ones. If you can’t use the tap water.
Shampoo, Conditioner
Tooth brush and tooth paste (small ones so you can throw them out afterward)
Facial & foot scrub
Facial peel off mask
Nail file, clippers, tweezers (for eyebrows)
The last several items I would just buy and of course you can use after you get home. But when you are gone you can treat yourself if you are feeling up to it and therefore you wont feel so alone. Give yourself a pedicure, manicure or a facial.I am not sure the ages of your kids but you can talk to them every day and make things now for them so that daddy can have them open them while you are gone.
I say this often to many clients(dog training), when you act as though nothing is wrong and feel it in your heart your animals and kids will do the same. A dog knows when you are lying…. I have a dog that I trust with all my heart and soul. If he is upset due to someone then I know there is something to watch for about that person. A good heart never lies and kids are the same way. They pick up on everything, if you are upset they will know. Be the "alpha" and just go with it. If you are upset and show it they will be upset and cry for you and want to know what is "wrong" with mommy and "why is mommy gone"? If you just simply say mom is going to be gone for a few days and I’ll be back on this date and you can talk to me every day and we can read on the phone and stuff, they will be more willing to be fine during your time gone.
Again your dh seeming to be "fine" with you going is the best thing for you right now. I know it seems so cold of him but truly if that is his attitude then the kids will pick up on it "that it’s no big deal" "daddy isn’t worried so we dont have to worry"…. That is what you want as a mother. No stress when you aren’t home is priceless! Now of course when the poop hits the fan, be asured he will take care of it but remember that he wont take care of it like you would if you were there. He isn’t you, he has to deal with things as a man would. Kids KNOW this so don’t fret.
My husband has the kids watching tv and being good while i’m gone all the time. I’ll be damned if I can get them to do it though, i thought he was harsh at one point but truly he wasn’t. He is a man therefore his voice is different and his ways are different and the kids adore and respect that and look forward to when mom is gone even though they get upset as I am walking out the door. At first I was upset that in my head no one loved me when I go out and no one missed me but I had to get over that real fast… I have never had to do what you are doing but applying this same logic to going out to dinner or grocery shopping or going to your cabin for a few days will help you understand that you can do this and you can try to make this a good experience too. Like a mini vacation…. get back with nails/toes and face all prettied up. I truly don’t know how tired you will be so please please take it easy. This is just some suggestions to help you with not thinking that it will be a bad time away… try to think of it as getting some crocheting done or knitting or reading a book if you are too tired to do yuor nails. Or give yourself a good hair washing and comb it out nice.
Prayers for you and hugs!
Hi again,
On behalf of moran husbands every where may I say this. Yes we worry and no we don’t show our emotions like women do. We like it when you take time for yourself, it lets us step up to the plate and show of our good stuff. Hockey, you sound so much like my wife when our kids were young. Trust your husband, he may be a moran but he’s not stupid. You may also want to treat it as a bit of training for yourself. Our kids are all in the upper teens now and we have been taking week long trips to the Boundry Waters Canoe Area for the past six years. You’d be surprised what you can live on for a week. Not to mention what we smell like after a week. Your kids are going to grow up and they may want to go wilderness camping with their dad. No phones, no radio, no computer, nothing, see yah when we get back. It’s heaven. Take the time, relax and be nice to yourself the big guy’s got things covered.
Kam
KAM wrote:Hi again,On behalf of moran husbands every where may I say this. Yes we worry and no we don’t show our emotions like women do. We like it when you take time for yourself, it lets us step up to the plate and show of our good stuff. Hockey, you sound so much like my wife when our kids were young. Trust your husband, he may be a moran but he’s not stupid. You may also want to treat it as a bit of training for yourself. Our kids are all in the upper teens now and we have been taking week long trips to the Boundry Waters Canoe Area for the past six years. You’d be surprised what you can live on for a week. Not to mention what we smell like after a week. Your kids are going to grow up and they may want to go wilderness camping with their dad. No phones, no radio, no computer, nothing, see yah when we get back. It’s heaven. Take the time, relax and be nice to yourself the big guy’s got things covered.
Kam
Oh this is so sweet. I know with all my heart, that our husbands, who stand by their (mental) women, are the salt of the Earth. It would be so easy for them to give up, but they keep standing by.
It is not easy for us, though, during our off-level times, to control ourselves. To start with, we are controlling types, and Graves exacerbates that. Thank You for weathering us.
-
AuthorPosts
- You must be logged in to reply to this topic.