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Husband unloaded on me


calypso
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I don't know where else to turn for this one and am hoping others can share how their spouses/partners deal with a chronically ill significant other.

My husband, who is an absolutely great guy, just had a total breakdown yesterday after I came back from my cardiology appt. He was hoping that my doctor would have some more ideas or explanations for my declining health and he had none except that I appear to have some "neurochemical" issues that likely we will never find a cause for, and they may never get better -- or they may totally subside one day. Both this cardiologist and the five other doctors I have seen are all at a loss because I don't fit the POTS profile alone; I seem to have these weird other things happening (the rapid muscle wasting and pulmonary issues) that don't fit in and imply something more serious, but yet the cause hasn't been identified.

The fact that there is so much uncertainty -- and the fact that this illness came out of nowhere, and my husband nor I have ever really had a serious illness (except my husband had Lyme disease two years ago, but he mostly recovered) -- is making him crazy. He says he has no idea how to help me, feels like a failure, can't enjoy time spent with me because he knows I don't feel well, etc. Since we have had the baby, we haven't had a normal family experience due to the fact that I am always ill. He says he feels like he's been forced to our happiness and relationship for our child, because I became ill days after she was born. He loves her more than anything, as do I, but I think he just feels as though life has been so unfair to him.

He is not interested in counseling, and he won't change his mind on that one. Any other ideas on what I can say to make him feel better? What can I do? I tried to tell him that others here have made spontaneous recoveries and that maybe someday I will get better as fast as I got sick, but frankly I don't really believe that. My instincts tell me I am getting slowly worse and that in my case, my life actually may be in danger due to the muscle wasting. This is something that happens when people are in final stages of illness -- at least from what I have researched.

Any ideas? I am getting desparate here.

Amy

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Wow Amy. I am so sorry. This is really a tough one. I think that the toughest time in my life and in my marriage was fearing the unknown. It is sooooo hard to cope and live when you really don't know what you have or are dealing with. I am very fortunate my husband is wonderful with this situation, but we both have had to work really hard to keep our relationship good. This disorder can destroy a relationship (as Dr. Grubb would say) You need to erase your old life and start a new one. What may have been a fun activity for you now may not be possible. If your husband love you and I think he really does... he will help you with this.

Let me tell you how we do things in my house. We have decided to start working on crafts together, we read together. We talk and express our feelings about this all the time. There have been many nights when the two of us have sat on the floor and cried and screamed because we were so mad at whats happening. Let me tell you, it really helps. Every week we have "date night Wednesday night" If I am feeling well we may go get something to eat. If I am not feeling well we may rent a movie or play a game. We love games. All that matters on that night is that we enjoy in eachother. That is what you need.

What you really need to do is share your fears but also share your hopes. None of us have a clue why we have been dealt this hand. But you know what they say when you are given lemons make lemonade. Trust me it really takes a while to gain a different perspective on life.

A great book you might want to read is "When bad things happen to good people" it has helped me more than I can tell you. I wish I could help you more, but you just have to trust in your relationship, confide in eachother, and keep in mind that things may always turn around for you.

Best of Luck

Mindy

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Hi Amy, I too was told that I did not have typical POTs, something else was going on. It sounds very likely you could have Mitochondrial Myopathy. Your Drs may not agree with this, because the disease at one time was only seen in children who were gravely ill. Now they are finding adult onset. The rule of thumb for mito is any disease, any age, any progression. Your disease has affected many systems and your muscle wasting has to be a myopathy. My best suggestion for you is to join the Mitoldies support forum. You will learn more there than from any Dr. Just ask them a lot of questions. They are a wonderful group of people. You don't have a confirmed case of mito to join them.

On the NDRF someone kept mentioning mito to me. I looked it up and did not think it was what I had. AS time went on I dug a little deeper. Then I joined the forum and learned so much. Now I am convinced that mito is what I have. I had a muscle biopsy done that showed abnormal mitochondria and I am waiting for more results.

I hope I have not overwhelmed you. My heart goes out to you. It is so scarey to be in your situation. I have been there. To give you some hope, I can say knowledge has made this so much better for me. I feel more in control and uderstand what makes me worse. I am now able to avoid triggers that make me me worse. Please feel free to e-mail me privately any time....Manich@netzero.net

Best Wishes,

Dawn A

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Amy

I am so sorry that you are going through this. The unknown is the worst aspect of any significant illness. Of course you are frightened and feel desperate, and of course it is a huge stress on your relationship and family. As far as your health, the one positive thing is that it really seems unlikely that you could have something life-threatening if all of these specialists have yet to diagnose it. I am glad that others here can give you some thoughts on where to turn.

Please try to keep positive thoughts in mind as much as you can. I know it is easy for me to say--but, one--many people do recover to a good degree of function after a bad episode of POTS. Two--your mind is powerful. Positive thoughts can affect the outcome of an illness. There is more and more research showing this. Read some stories of others who have prevailed over disabling illess--like Dr. Weil's Spontaneous Healing. three, this all came about for you following pregnancy (same as for me, essentially, although I was also sick during pregnancy with POTS). As Jessica has pointed out to me, it takes the body 18 months to return to the pre-pregnancy state--not 8 weeks, as your ob-gyn has perhaps told you. Thus, any effect from pregnancy/post-partum can still be playing a role in your health. I still don't feel right--and my daughter turned 2 today. It really took a whole year for me to get to a reasonably functional level again--and even then, I still had and still have bad days with bizarre symptoms that come out of nowhere, and are sometimes scary. POTS symptoms are so strange, that even when we have done a lot of research on the condition, it IS hard to believe that there isn't something more "serious" wrong.

As far as your husband's frustrations--my husband was exactly the same--the comments you said he has made completely mirror my husband's at the time that I was quite ill. He was also angry and frustrated that he couldn't help me, and that we didn't have a normal life. My daughter spent her first months either in the house or yard and virtually nowhere else, as I was too weak and dizzy the vast majority of the time to do anything normal. He also didn't want counselling (although did do one session that didn't really help him much).

I wish I had good advice regarding your relationship with your husband. If he would be interested in "talking" with my husband over e-mail, I could attempt to arrange that (send me a personal e-mail). WE know how much it helps to share our experiences and fears with others who understand--maybe it would be helpful for him too (and for my husband who is still frustrated by my minor symptoms).

Katherine

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I'm sorry this is taking such a toll on both of you and your relationship. I think we've all been through our ups and downs with our families and partners. Chronic illness does not only affect the person with the illness!

My heart goes out to you. I don't know that I have any real words of wisdom or comfort for you. But I will share a few things that have helped us.

Research. I'd never been big on research, but once the internet became a part of my everyday life, it has been incredible. I started by looking up and reading about each individual symptom, following even obscure or unpopular ideas of what it could be related to. Finally one day, boom - I stumbled upon something that led me to the first real possibility for an explanation of my illness. From that point on, my research & learning has been much more streamlined. It also led me to try non-medical treatments, many of which have been of great value, and the most important of all being the Metabolic Typing Program. This gave me such a feeling of control over what was happening to me, instead of feeling like a victim.

Encouragement. My husband and I are both driven, Type A, can-do leaders. That all came to a screeching halt for me. He felt betrayed by me/my illness, I felt betrayed by life. But we have both slowly come to grips with things. My hubby is always pushing me to do what I used to do, even if it's not done as well. He will even push me to go for a walk that I don't feel up to, and most of the time I'm glad he made me go. At times I did resent him, feeling he didn't understand. But the reality was that it made me not give up, and helped me realize that I can do more than I think I can.

Down time. Instead of going out to eat or to have a drink, we have come to enjoy renting movies, or even taping them and watching them together at another time. If we feel up to being with others, it's easier to go elsewhere than have them at our house where we have to first clean the house and then play host, and hope they don't stay too long for my energy to hold out. (I wish I could make him enjoy board and card games or jigsaw puzzles, but I had to give up on that idea. However, asking a friend to come over for those things is also good.)

Alone time. It's important for your spouse to be able to have a guy's night out, or get together with friends to watch football or some such. He needs that opportunity to forget about the struggles for a while. And I really enjoy having the house to myself for a while, especially knowing that he is doing something fun for himself.

Hobbies. Find something new to pursue (alone or together), such as art, crafts, writing, music, scrapbooking, etc. There are many classes on the web if you aren't strong enough to go to a classroom but want instruction on something.

That transition period from active to sedentary can be really tough, but you can make it work for you. I am physically weak, having gone through terrible deconditioning after having once been strong and in great shape. Often, this angers or frustrates me. But my husband says that since he can't cure me, doing those things for me makes him feel he is at least doing something instead of "watching me be sick."

Whatever you do, if you love each other, work at making it work.

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Amy,

I think mostly everything is already said and it's all true. I think my husband suffers as much as I do sometimes and that's just because of all the things we can''t do together anymore. Then there was a period he acted really grumpy until I said: okay, that's it we have to accept this because if we can't we can't stay married. I don't want this POTS to destroy your life, it's not what we have been chosen but we have to deal with it or split. Ofcourse we didn't split (I guess I knew that ;) ) and as if he turned some switch, he is accepting our situation and now we BOTH are trying to make the best out of it. Ofcourse it's difficult (as for everybody, even for my children who new a perfectly healthy and very active mommy) but when you love and respect eachother there IS a way to go on. Hope this helped you,

Corina

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Guest tearose

Dear Amy, this is such a difficult topic. I'm so close to it that is hard to write. I sometimes have an easier time talking than writing. All the above suggestions and comments are the types of suggestions I also would try. Here are some of my heartfelt thoughts. I think those who love us keep hoping that one day we are going to say something like "I'm all better now", or "everything is going to be like it use to be". For some, this day has come and maybe they don't post here anymore. For some of us, this day still has not come...I've been waiting since 1991!! As opposite as it may sound, I have finally accepted my physical limitations and still, even though my condition has been slowly progressing more seriously, I can hold onto hope for some aspects of this disorder to lessen. You are so correct, there is so much uncertainty! But that is also life in general. These tough times you and your loving husband are going through will strengthen your relationship. Take it from me. Married 24 years to my soul mate and two wonderful teenage sons. Remember, " We cannot control what happens to us, we can only control how we respond". Tell your husband all that you think and feel and let him respond. My guess is that he is so frustrated that he personally can't DO anything to help you get better! He probably wants to"fix" you like men think they are suppose to do. Let him know too that if he needs to go away that he should do that. My prayerful thoughts are with you. Kiss that baby, talk more with your husband. I think he will not choose to walk away from you, he'll walk more closely beside you. keep sharing, hugs, tearose

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Amy, I am so sorry you are going through this difficult time. I sometimes try to place myself in my spouse's role instead of the one with the chronic illness. How would I handle not being able to help him and how would I feel about our lives changing dramatically without our consent?? What I realize is I would want to know what I do that is viewed as helpful? I try in my own relationship to thank my husband for the smallest of things that he probably doesn't realize mean a lot to me. When he hears that something he does helps, he feels better.

I wish that your doctors could find a reason for your other symptoms but I will share something that was helpful for me. One of my first doctors I saw, who after many specialists and test results that were "normal" said to me -- "sometimes, as doctors, we have to wait for the body to present us with more clues so that we can determine what is going on....until that time, try to go back to living your life and not worrying more....if it were life threatening, I feel confident we would have detected it". His honesty helped to reduce my stress level and sometimes I think we have to go on day to day not trying to fear what ELSE may be or become wrong with our bodies. This is so much easier said than done but I have really tried to focus my life based on today, not what may happen tomorrow. There is a great book called THE POWER OF NOW that speaks to this subject.

I hope that you and your husband find your way.

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Dear Amy,

I know this pain intimately. Many of us do here, as you can tell from the responses. Let me try a different path. As to the questions ". Any other ideas on what I can say to make him feel better? What can I do?" I'd suggest you both stop trying. Not to say you should stop loving each other. But stop trying to make each other "feel better". That is something we each need to do for ourselves. My happiness is not dependent on my husband (though at times I really want to blame him for my feelings) and his happiness is not dependent on my health. That's the bottom line.

I know he feels guilty and blames me that I can't "do things" with the children. But I know that that is really just his own mind making up a sad story. That's what our minds do ... they make up stories all the time. Sometimes we make up happy stories, most of the time we make up fearful, angry, guilty stories. Just like on TV .... hmmmm coincidence?

My mind still makes up stories ... we watched "Something's Gotta Give" the other night (skip this paragraph if you haven't seen the movie and don't want to know about the ending) and after the show was over my mind starting -- thinking, thinking, thinking. I thought to myself ... My husband wouldn't come looking for me if I went to Paris. My husband would be delighted if I left him. Thinking, thinking, thinking. I should have recognized these were mind stories, but I made them real and turned to him and said outloud "You wouldn't come for me in Paris would you?" Now that was really risky -- if I had hit him in one of his own negative mind made moods he could have added fuel to my fire. I happened to be lucky that time though and he turned to me and said "Truth is, if you were well enough to go to Paris by yourself. I would love to follow you there. We could have fun together." For me that was enough to let me leave my mind made drama and move on.

The future simply doesn't matter. Will we recover, won't we recover. Instead of focusing on a mind made future, look deeply at this tiny little moment we have. Right here, right now. What can you do? Maybe a little smile at one another from across the room. Perhaps a soft thank you and a hug. Forgive yourself and each other for spending time and energy worrying about what has not happened or the wake of the boat that is now the past. Embrace each other, right now, because this is all any of us have.

Good luck to you and your family on this healing journey.

EM

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Dear Amy,

Chronic illness is a nasty, rough and bumpy street. Everyone in your life is effected, oneway or another. Your immediate family is the hardest hit and the easiest to destroy. You, your spouce and kids have to learn to adjust to the fact that almost anything can happen to anyone at anytime. As to the feelings of being "helpless" and "unable to do anything" is perfectaly natural. Men are raised to believe that there is little that they can't do and they are responcable for "taking care of and protecting" their family. Like us, they have to learn that we have little or no control over what happens and that they only way to survive is to learn to "work with what we are givin and make the best of it".

Unfortunately, we live in a society that has made it very easy to "give up and move on". This is a thought that anyone in any chronic illness situation goes through. I have learned through personal experence that the best thing to do is TALK about what you feel. Mabey with your spouce or not with your spouce, but there are so many others out there to talk to. Family, councelors, priests, chat rooms, etc., etc.

I have lived on a two-way street for many years now. I have only been sick since March 2000, but my hubby has both major depression and post tramatic stress syndrom from a terriblly abusive father (physical and emotional).

We have seen each other through the best and worst of life and death. The passing of my hubby's mother was a terrible blow in june of 1999 (3 days befor our wedding anv. we buried her on our anv.) Three months befor that, his favorite aunt died (also of cancer). Three weeks after his mom's death, his grandmother died of CHF. Shortly after that, the truth about what had happend to my hubby and his sibblings came out and there was a lot to deal with all at once. And toward they end, just when I got sick he developed social anxiety and wouldn't even make phone calls. He is still in therapy. Over the course of the summer, we have found out that MY BROTHER has sexually assaulted our daughter. Through all of this we have talk, yelled, cried, hugged and loved.

Anyone of these events would be cause for divorce. Just so you have an idea, better than half of the marriages where ONE spouce has a chronic illness results in divorce (70% in mental illness). We are still together and still doing the same stuff as when I got sick.

How do we cope? We have our own spaces, do crafts together, and apart. We shop alone without the kids (we rarely get "dates"), we have our own projects in church, we meditate together and apart. And we talk about everything. We are together every day, almost all day. I can't live without him. And just so you know, sex is not an issue. We are intimate, we touch, sit together, hold each other, tickle and play, but we rarely have sex as I just can't tolerate it. There is always those who just can't take it and have to leave, but I would atleast try counseling befor it gets to that stage. I would also suggest a chat room caretakers of chronicly ill people. It can make a difference for alot of people.

I send you many good vibes and prayers. We are here for both of you and I think that you can work this out if you both really want to.

:o:wub:

Blackwolf

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Amy,

My heart feels for you very much right now. I too have a wonderful partner who is a very good father, provider, and a really good person. But he is at a loss when it comes to my illness, and has been for the past 3 years since it began. At times there are emotional shut-downs (which I attribute to being unable and unwilling to open up to me about it) and at other times there are emotional floods...when all the feelings come out about how nasty this thing really is. It's no doubt a hard road. The beautiful baby girl that you have in your lives can be your saving grace...and the bond that unites you and your husband has been strengthened by her presence, I hope :o Without Ethan, I am not sure if David and I would've made it through this at such a young age. He literally came along exactly when we needed him- both of our families had experienced detrimental losses that year, and I had gotten sick as well. Life was on a downhill spiral...we had even separated for a while because everything had taken such a toll on our emotions and our finances. Having the baby just put things in perspective for us. We have been stronger because of it, and the healing, positive energies that children carry with them all the time has made me a happier person. Initially, I had been through some very rough emotional rollercoasters with the POTS onset.

I do think it's great that you seem to be maintaining a positive attitude towards him, because I found that to be really important. The more I cried about my hardships, and the more resentful I became towards David for being "normal", the worse it got for us. Now we strike a balance between me venting and him being more understanding, which has taken a long time. We still have a lot of rough days, and no doubt hard times ahead. I don't think David would ever go to counseling either, so I understand your predicament. My best advice at that point would be to see if he would at least be willing to talk to one of the guys on this board (as Katherine suggested) one-on-one. I really hope that you two can heal and move on...just try to have as much fun as you can together, and laugh a lot. Show him that you can and do enjoy life. And please let us know when you need to talk :wub:

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Dear Amy,

My heart goes out to your husband and you. One of the benefits of this forum is that I do not know you and so can be a little more objective than if we were acquainted. A couple of things come to mind:

1. Your husband is talking to you. Maybe not in the way you would want, but at least he's talking and has told you of his feelings, some of which are very deep. He's probably been carrying this around for awhile and it came out the only way he knew... "unloading" It's a start. It's important. Validate his feelings... because this isn't fair to him. Tell him point blank that this isn't fair to him; isn't fair to you or your child either. And it's not your fault that life isn't fair.

2. Sometimes you gotta get to the bottom of the hill before you can climb back up. Maybe that's where he's at. Hopefully the discussion of his feelings in #1 will help open up that communication.

3. Sex.......... hoo boy. On top of everything else, there's the male ego and it's unrelenting sex drive. I guess I've made my peace with that one and found a variety of non-cardiac challenging positions. I had a great sex life when I was healthier. Now, I need to concentrate on doing what I can for my husband to the extent that I am able. Marriage isn't only marrying the right person, but being the right partner. If I'm well enough to do the dishes, I'm well enough for sex.

4. Counseling. The best analogy I ever heard for this one came from a counselor we saw for infertility therapy some years ago: "You two dance beautifully, but you need to learn a few new steps." Since going to a bona fide counselor seems out of the realm of possibility for now, consider your other resources. Is there anyone at your church or circle of friends/family who have dealt with a serious, ongoing illness? Especially if it entails the man really stepping up to be a man . If there's a peer or someone else he can talk to.....that'd be great. Sometimes they just need to talk to other guys. Role models like this don't grow on trees.

5. Mutual Support. Have him go with you to doctor's appointments where you are likely to hear "big news" together. He may hear something you do not, you can bounce ideas off each other and lean on one another right from the get go. Cry in his arms after the doc leaves the room instead of alone in your car. Works for me.

6. Faith. The idea that any of us has control over our lives is a comforting illusion we tell ourselves so we can get out of bed in the morning and drive on the freeway. We have no control. Whether you call it God, Jesus, Jehovah or whatever, knowing that you are not in control is a big step. Having faith in something other than our own abilities is paramount to surviving and triumphing over this......even if neither you or I "get well". We can still triumph. We triumph every day that we live life to its fullest, without regret, with love and concern for others.

You have much the same fighting spirit I have. No doubt your husband found you a strong, capable woman. Now that is changing before his eyes and he is helpless to stop it. Helpless men = frustrated, unhappy men. Just don't be so strong and spirited that you try and handle this alone. Grieve his losses with him. I've even apologized to my husband for things I would like to do and once used to do. (Apology, blame, fault and responsibility are four distinct, diffferent things and one does not mean any of the others are present.) So I say "I'm sorry I can't be the lover I used to." His reply "It's not your fault."

Every couple that stands at the alter is promised rough times.......how we handle them is what matters. The part about "let no man put asunder" isn't about divorce. It's about how we treat one another as husband and wife. You'll get there. Just keeping working together.

Prayers for both of you.

Either of you could call or email: Amy Richcreek 419-841-7989 or tajrichcreek@cs.com

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I am so overwhelmed with all of your excellent ideas and thoughts that I don't know what to say. But let me start with this: I did not mean to sound negative about my husband at all. I am not sure if I implied that; I just meant he emotionally unloaded on me, not unloaded in the sense that he yelled at me or anything. And I feel like we are absolutely both committed 100 percent to this relationship and to our daughter; it's just that sometimes I feel like no reasonable healthy human being can keep that up. Why would he want to be with a sick wife, I ask myself? Would you believe that the only other girlfriend he ever had had Wegener's granulomatosis, some horrible autoimmune disease? He had to watch her go through plasmapheresis and such. What crappy luck he has. Some people believe in coincidence; I do to some extent, but this is some coincidence.

The real issue here is I need to grow up and accept that life has its limits sometimes, and that I have to face this illness. I think it's different for me because like I said, I still have some uncertainty in my diagnosis. I have lost so much strength physically -- I can't hold a gallon of milk in one hand anymore, I can't hold my daughter with one arm for more than a minute or two and she's only 17 pounds. I hate that there's no answer as to why. While many of you here deal with fainting or dizziness, I have none anymore; I had dizziness early on, but that's it. I deal more with hyperadrenergic symptoms and the heart rate increase on standing, but the other stuff doesn't seem to fit in -- except for the shortness of breath, which a few of you have all the time like I do. I just never realized until now that you can have something physical wrong without there being a medical answer or test that shows why. My sister, who is in family practice, continues to tell me I need a mood stabilizer. She honestly thinks that I have post-traumatic stress from my pregnancy being rough. I just don't know what to think.

But I do know one thing: I am checking out "Spontaneous Healing" from the library on Monday, I am staying home this weekend watching some movies and playing some board games -- in between the packing we are doing because we are moving next week -- and I'm hugging my little girl. The poor thing either had a reaction from the flu shot that resulted in a fever of 103 or she picked something up in the doctor's office when I brought her in for the vaccine. I am getting my first taste of having a sick child -- ouch, it hurts Mom even more, I think!

I am going to gradually work on positive thinking and affirmation, because I really have a lot of negative voices in my head right now. I have been thinking all this time if I could just have one little sign from my body that it was headed toward healing and not decompensation, I would be mentally more positive. Well, that has not happened much, but at least I am not dizzy anymore! That means I can get up and walk around, at least. I am getting progressively weaker, but I am still able to walk and do things around the house. Many of you guys can't do that; I am thankful that I still can and pray that all of you will get to that point if you aren't.

I wish I could elect one of you for president -- you all have the compassion and ideas that comprise a good leader. You are all wonderful, special and unique. I love that each of you has something different to say or to offer. I only hope I can reciprocate that support.

I am going to try a few things you guys suggested and post again on Monday. Thanks, from the bottom of my heart.

Amy

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Amy

I didn't really think your husband was bad at all, just overwhelmed like we feel sometimes. That's why I started the seperate post about a support forum for the other half of this equation. They have feelings and go on emotional roller-coasters from time to time too. Men tend to shut down and want to be in their "Cave" :) I think Our loved ones just need a way to vent too.

I know it's got to be tough for you and your family. It sounds like you're having doubts about your diagnosis or wondering if there is more to it. I have heard that with Dysautonomia you can certainly have more than one diagnosis, it's not that uncommon. Hang in there!

I'm sure your sister means well but be cautious because Dysautonomia isn't something that doctors spend anytime studying about in medical school, I know that for a fact.

Steph

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amy,

i am not married, nor do i have a little one, so i don't have any good insight. the things people already said were amazing...i hope that you will find them helpful!

i do live with my mom, and she and i are VERY different in our communication styles. i like to talk, talk, talk things out and she withdraws. we try to go to counseling together sometimes just to check in on things.

sometimes she takes her frustrations out in ways that are really hurtful to me, and i have to remind myself that it isn't about me. it is so hard b/c she is my mom, caregiver, and best friend. we are so very close to one another. also, we are learning that sometimes when we get mad at each other...or think we are mad at each other...we are really mad at the SITUATION....like what your husband described. we are mad that we have these limits or have to do things in a certain way, etc. we are mad that we can't live independently, etc. of course, there is a flip side to all of those things...the blessing of time together that we wouldn't have if i lived far away and was working, etc. but, sometimes we do feel trapped by this life.

i mention this b/c i get hurt very easily and my mom and i are so different. sometimes she can have an outburst somewhat like your husband did. she might say mean things, but later she feels badly. also, we rarely yell (i grew up doing that and hearing that and now we are mindful not to do that!), but we also forget to "fight well"...and sometimes after we "get it out" like your husband did things start to go more smoothly. my mom "stuffs" things and i don't...and sometimes that can boil over in bad ways. it's not a good or a bad thing, it just is. that is how she works.

the challenge for me is meeting my mom where she is. and trying to let go at times that it isn't about me.

since i don't know your husband, i don't know if any of this makes sense. except that possibly, he's like my mom in that he is awesome and loving, but maybe "stuffs" things, and it just boiled over. perhaps he said things he didn't mean. or perhaps, yes, he is insanely frustrated by the situation, but not by YOU. there's a big difference b/w those things. i always have to say to my mom when she is withdrawing from me, "is this about something b/w us, or is this about you having work to do, etc." she has to remind me that she isn't made at ME about the illness. she is mad at the situation.

i, of course, am a huge advocate of counseling...and maybe at some point your husband will change his mind. but for now, i hope this situation opens the door to more communication, closeness and understanding.

also, please keep us posted. i haven't seen you on much and that always makes me worried about the folks who are "regulars." so, please let us know how you are faring! my heart goes out to you.

emily

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DancingLight,

Don't worry, I am alive ... I am just so busy this week with Election Day, packing to move this weekend to a new house, taking care of my girl, getting an echocardiogram tomorrow. I haven't had much time to write and it frustrates me because I want to reply to at least six other posts!

I appreciate all of your thoughts and support. My husband is just so tired -- physically and mentally. He has to pick up a lot of my slack, like taking care of the house, helping out with our daughter and such, and he has to do this after a long day at work. He goes in at 3:30 a.m. some mornings and 5 a.m. others, and doesn't get home until 4 in the afternoon most days. He has a management job so the calls don't stop when he leaves; they follow him home on his cell phone -- which I would love to smash into a million pieces, might I add! When he gets home, all he wants to do is take a nap. So I have to keep on going despite the fact that I am exhausted from a day of chasing a soon-to-be toddler all around. We joke that we should change our last name to Tired.

We are finding a way, though, to deal with it. We joke a lot about it, we cuddle a lot, and we cry/scream a lot too. Like I said, it's mainly me who needs to accept that this illness may be staying awhile, so I need to move on with my life and not keep waiting to get better. I am still so scared about the unknowns, though -- the weird weight loss/muscle loss component that no one can explain, the chronic shortness of breath thing, and all the other outwardly obvious signs that my health is failing. If one more co-worker asks me what's going on, I am going to freak out. I don't know what to say, so I say that I guess it's just breastfeeding burning off all of my calories. Although we all know if that were true, women would be having a lot more babes.

Amy

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