How do you all cope?

[dismichelle]

I've been reading this board for a while, but finally decided to post.

A little background:
This summer, my husband and I had what we thought was a pretty good life. We are both in our late twenties, he was working parttime as well as had one year left of electrical school and I have been a nurse for almost a decade. I was also pregnant with our fourth child. Then came the middle of August and my DH got sick, I thought it was maybe the flu or pneumonia.

He went to the ER on a weekend and they saw not much wrong, gave him antibiotics and said he would be okay, at that point I actually thought he may have had multiple sclerosis, but since the doctors said there was nothing wrong, I trusted them.

Fast forward to now and we've had at least 4 different diagnoses, surgery, multiple outpatient tests, 4 weeks total in 3 different hospitals, 2 episodes of paralysis from the waist down, a wheelchair, walker, and cane, and we finally have the right diagnosis of sarcoidosis and transverse myelitis. In my years of nursing, I've only had one patient with each of these.

Now we're at the point where he can walk with a cane, but has multiple problems from the myelitis such as debilitating pain, no physical endurance, and urinary problems.

My problem has been trying to cope with our new life. I hate these diseases and what they have done to our life, and I really just want our old life back, even though it doesn't look like that will ever happen. I find myself crying a lot and having panic attacks occasionally, especially when it comes to the little things. I miss how he can't help as much with our 2week old, can't take the trash out, can't just run to the grocery store to pick up things, and I still have no idea how he will be able to keep the baby when I go back to work.

My question is, after going back and reading a lot of the old posts here, you all seem to be doing okay emotionally, or are at least at a place where you seem to have accepted what your life is now. I guess I just need a little help to get to that place.

Thanks for taking time to read my little storybook.

 

[Pea-n-Me]

Welcome, michelle. Wow, you've got a very full plate.

I think it's always harder dealing with issues like this when you still have very little ones to take care of. Do you have help available to you? Family and friends nearby?

It's also a mixed bag being a nurse (I'm one, too). On the one hand, you're good with medical knowledge. OTOH, you're always taking care of everyone else and probably letting some of your own needs slip. Be careful about that. You need to take care of yourself, too.

Generally, crises, by definition, can't last indefinitely. At some point, they have to kind of resolve, or at least, even out. But in your case, it's tough where you have so many young children and a husband that's debilitated. Presumably things will be tight if he can't work, and difficult if you need to work more.

I guess while he (hopefully) stablizes medically, I'd try to get my ducks in a row. That might mean enlisting as much help as you can in lining up rides for appts, childcare, help with the house, meals, figuring out your work schedule, housing, etc. If you belong to a church, this might be something that members could help with. Maybe there are other services that could help - do you know a good social worker who can look into this for you? Is there a Mother's Helper in your neighborhood, say, a young girl who could come in for a couple of hours here and there to help occupy the younger kids while you do what you need to do?

I don't know the prognosis in your DH's situation, but to answer your question about coping, I think it's important to hold onto hope that things will get better. That's sometimes the thing that keeps you going. The good news is when you make it through something like this, it gives you a whole new appreciation for life.

I'm glad you posted, and hope you get responses that help you. Keep us posted.

 

[Elfstar]

Hi, Michelle, I wish I lived near you, I'd help you a couple of hours a week.

First, deal with the panic attacks - talk to your doctor, if your not nursing your baby he may give you something to help with them. Remember to take care of yourself (nurses are notorious for not doing just that!). Strive to get through just five minutes at time - dealing with change gets easier as time goes on. Find somebody to give you an hour or two to yourself each week if you can. Other than that, I will leave the rest of the advice giving to others younger than me, my only child is 27.

I'll add you and your family to our prayer list, and cross my fingers for luck for you!

 

[dismichelle]

Well, his prognosis is uncertain. 1/3 of the people with this will be paralyzed for life, 1/3 will have some degree of disability, and 1/3 will recover almost completely. From what I've found out about it, the point where you are after 4-6 months is probably where you will be from then on. He is also on high dose steroids and a mild oral chemotherapy to help his spine heal and prevent another relapse.

He has gotten to the point where he can drive some, but god do I still miss the little things he would do for me and our family. Can you tell that he had me pretty spoiled? I had it pretty good.

We were about to buy our dream house, really were just within days of making an offer on it. That dream house is still on the market, and he keeps saying that we should still go for it, but I am terrified of that because we're not sure if/when he will be able to work again.

We also have very little family here, which was a good thing for the couple of years we've been here, but now I'm not so sure.

I have also thought about asking my doctor for some kind of medication, but am scared that if I start them, I won't be able to get off them.

Thanks for listening/reading this. I have a bunch of sisters, but whenever I talk to them I get the feeling that they don't want to hear me crying on the phone. I finally understood that because my sisters and I are all so young, that none of us have ever had to go through anything hard like this, that they just don't understand/have no clue of what to say or do.

Thank goodness for this board and for others that have gone through rough times like this.

 

[safetymom]

You did a good thing by posting here. I am sorry for all that you are dealing with. It sometimes is best just to take life minutes at a time.

I am sure that life will settle into a routine for you and your family. Hopefully family and friends will be able to help you.

 

[Pea-n-Me]

There will be other dream houses, and other dreams. Right now your dream will be that your husband fully recovers. I'm reading a book right now about a lady that lost a baby - just devastating. But she went on to believe that that loss was what taught her about the real meaning of life. So sometimes it helps to look at things philosophically.

When I was going through cancer treatment (and had young kids, and working also), I had moments where I felt panicky - who wouldn't, really? What helped me, though, was learning to relax my mind - to meditate - something I'd previously never been into. Fortunately I had a support center that taught me how. It helped me a lot. What is great about it is that you can do it wherever you want and it's helpful even for just a few minutes.

I was going to say PM me and I'll try and help you get started, but WTH, maybe others will find it helpful too, so I'll post it here.

I was really never into the whole "sit perfectly straight, breathe in and out" part, it made me uncomfortable. So I say, go to a quiet place and get comfortable, somewhere you'll be uninterrupted for a while, even if it's only a few minutes. Do something that makes is "special" - like light a candle, or an incense, and put some soothing music on (you can pick up a CD at Whole Foods in the Wellness section). Concentrate on helping your body relax. Do NOT let your mind wander into all your worries - just keep it in the moment. Choose something ahead of time that you will focus on. It might be your favorite vacation spot - maybe your honeymoon or a place growing up, it really doesn't matter as long as it's somewhere you love to be that's relaxing. Then put yourself there in your mind. Hear the sounds, feel the air, smell the scents, imagine the tastes, use all your senses. And again, don't let your mind wander, keep it focused on this and this alone. Enjoy the time. Relax. You will find the benefits of this last most of the day. And the more you do it, the better you get at it.

Here's a link which also helps explain it. http://stress.about.com/od/meditation/ht/focused_med.htm

The other thing which might be really helpful to both you and your husband right now would be some Reiki treatments. I first got into it during my treatment also. There were volunteers who offered it for free at the support center (not only for the patient, but for the spouse, with the idea that the whole family, not just the patient, can benefit) which was great. Look around for support centers in your area that offer it for free. Another thought is that lots of OR nurses are offering this to patients undergoing procedures, maybe where you work there might be someone who could do it for you. Around what area of the country do you live?

HTH.

 

[mjwolfe]

Michelle,

I think I felt very much like you - wanting my old life back, wanting to just turn back time to when things were normal. (My DH had a terminal illness).

But I guess one thing I was opened up to was that there are so many people in this world facing things like this. I was not the only one. You can find strength inside that you did not know you had. I became aware that others had things worse than i did.

It took me a bit of time, but at some point I realized that I could not change or impact in any way what had happened. That is hard to accept for someone who likes to be in control. But the thing I could control was how I reacted. My behavior, my daily attitude - now that i had some control over.

In some ways I think I became very focused on the current day, or hour. I knew that in this particular hour, I would not be facing more than i could handle. When I tried to look forward though to what was in store for us, it made me scared, but here again - I tried to convince myself I could not predict the exact path things would take. If i focused on the here and now, it was something more manageable than fast forwarding to some scary future I could not predict.

It has been tough, and it continues to be so. I have often said that the life experience I have been through has changed me forever. I would hope those changes are for the better.

I can tell in your post you truly want to be able to cope with this. That is the start. I imagine there are many people out there that run away when things get tough. Give yourself the credit that is due. You have made the first step to coping in recognizing it is a state you want to be.

One thing I think is important is getting some rest. At night time, I used to tell myself that someone else would worry for me, and that I could sleep. So if you need it, please know that others will take up your burden so you can sleep.

take a little bit at a time,

Marti

 

[dismichelle]

Thank you all so much for your replies.
I am definitely going to try the meditation, even if it is for just a few minutes. It seems that it might actually help.

I know honestly that he could be so much worse, and there are others including some on this very board who are going through worse times than we are, so I try not to complain too much. Elfstar, I've read some of your previous posts and you and some others on this board are a saint. I guess you truly don't know how much you can handle until it's right in front of you.

Marti, you're right on a couple of things. Even though I learned a few weeks ago to just focus on what needs to be done today, I can't stop worrying from time to time about the immediate future. I want to take the older kids shopping for fall clothes, but am scared to leave the baby with him even for a few hours, which I'm sure he could handle if I got everything prepared for him.

Thanks again to everyone who replied.
Michelle

 

[BelleBeast]

Michelle - What part of the county do you live in, maybe some of us can help?

We will keep you in our thoughts and prayers.

 

[LuvOrlando]

No advice, just a

 

[luvdzny]

I was about your age when DH was diagnosed with cancer, we had a baby and a 5 year old.( That was 18 years ago.) I thought we would never get through it, but we did....more than once. Posting here was a great first step, there is a lot of support here. Just try to take things 1 day at a time, looking too far into the future can be overwhelming. I hope that your husband continues to do well and that you have many happy years ahead.

 

[Mickee]

Not sure your situation now and I hope and pray everything is going ok.

We have issues in our family,10 + years of Childrens Hospitals and now my wife was diagnosed with a brain tumor on 10/24....

Through the past 10 years, friends and family ask how we deal with my daughter being at hospitals at some point for months at a time...

We got through those times "One day At a time"

Yesterdays brought great memories.
Live today for what joy today will bring.
Don't worry about tomorrows until tomorrows come.

We have become a stronger family for all we have been through and continue to cope with, but life in general is not easy.....

Hope and pray all is going well.

One day at a time!


Merry Christmas

 

[dismichelle]

I read/lurk on the compassion forum occasionally and love the updates, so here's mine.

I am smiling again. When I first posted, I was so deep in depression (understandably so), that I couldn't think rationally. I considered asking my doctor for meds, but never did. I slept and mildly took care of my kids for more than a month. Thank goodness I came out of it, but if I feel myself getting close to that point again, I will seek help/medication. I feel like I wasted at least a month out of my life at that point.

DH is walking without assistance. He's still on the steroids and oral chemo, is tired more often, has to sleep/rest more than most, and has nerve pain. Sounds bad, but I honestly thought he'd never gain as much function back as he has.

Life is good.

He still hasn't returned back to work. He's taking more classes to be able to get a better degree where he won't have to do manual labor, and should be finished in August.

I and my family are very blessed. I don't know of too many people who were once totally paralyzed and can walk unassisted.

Thanks for all the advice, offers for help and hugs.

The absolute best advice I've received and now give is to take one day at time, and if that's too much then focus on the hour or minute.

 

[minkydog]

Dismichelle, I can read your pain and frustration loud and clear. I have no experience with myelitis, but I have a LOT of experience with sarcoidosis. My DH has had it for 7 years. As you probably know, most people recover from sarcoid in less than 2 years. A very small percentage will experience symptoms that wax and wane. And another very small percentage will have a progressive course. That's where my DH is. He has had multiple close calls and at this point has about 30% lung capacity. I won't go into all the details, because i don't think it would be helpful to you. But I wanted to address your feelings.

I too feel betrayed. Not by my husband, but by this awful disease. It has robbed me of my young, vital husband and left me with an old man who takes 3 naps a day, can't swim or sing anymore, and has short term memory loss, which causes a lot of frustration for me because he'll tell me things more than once and can't remember what i told him. We have a severely mentally handicapped 15yo son. DS cannot do anything for himself, so we have to bathe, dress, diaper, feed him and constantly watch to keep him safe. He's like a 120-lb one year old. DH cannot walk with him anymore. He can bathe him but not get him out of the shower and dress him. He can't lift him, so I do it. If DS falls asleep on the floor, I have to leave him there with a pillow and blanket because neither of us can get him off the floor. And I feel angry that it has to be this way.

But it's not all a terrible tale. As a result of this chronic serious illness we have really learned what matters in life. We are more appreciative of each other. We focus more on our family and less on climbing the corporate ladder. DH was put on SSDI about 5 years ago, so at least we have some income. We can still plant a garden, although it's an interesting process--DH walks up and down the garden in straight lines, pulling a hoe behind him. Then DD16 drops seeds into the ground and covers them up. I do all the weeding and picking because he can't do that anymore. We can still go camping(we bought a travel trailer) because I learned how to hitch it up, tow it, drop it, stabilize it and decamp. All he has to do is show up--and he enjoys it so! It's the one activity that we can all still do. He takes his oxygen and we're good to go.

Anyway, that's a long way of saying I so sympathize with you. There are a lot of times that I get angry and wish that things were different. But they're not and they never will be. DH will eventually die from his disease(most people with sarcoidosis NEVER get this sick, btw.) And it's just not fair! So I have to find the little things that make life good. I take meds for depression because without them I would be crushed. I have a support group and a therapist who are very helpful. If you find that you are feeling depressed, sleepless, irritable for more than 2 weeks, you ought to do yourself a favor and talk to a doctor. They understand. As one of my docs said to me "If I had your life I'd kill myself. No wonder you're depressed." Kinda funny now, but it wasn't funny at the time(and I fired him, too.) But it's true. NOBODY would trade lives with us. But they don't understand that THERE IS JOY. We just have to look for it. Best of life to you.