Feel like I shouldn't talk about my disease because my poor nephew is dying from his

General
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As some of you know,I was only diagnosed a few weeks ago but like most,been suffering for years.

My nephew has the worst kind of Muscular Distrophy. He was diagnosed when he was 2 and his prognosis was that they didn't expect him to live past the age of 15. He's 21 now and still lives at home but is a palliative patient. His room has everything you would expect to see in a hospital room along with a small fridge with all of his liquid compound medications.He has Scoliosis so bad that he's twisted up like a pretzel. He has signed a DNR and my sister is an amazing caregiver. He's only been hospitalized twice amazingly,but when he has been in the ICU,the nursing staff doesn't even know how to care for him,his machines are different and his case so unique.So even when he's in the hospital ,my sister doesn't get a break. From the time she wakes up until the time she goes to bed she is caring for him and fighting to keep him alive with exhausting therapy.The doctors and nursing staff told her that they've never seen such a strong advocat before.

Up until the last 2 years,we as a family have been trained and have been able to pitch in and give her a break.Now we can't. It's become too much for us to take on and little by little we've been worn down by this horrible disease. He got a feeding tube last year so he doesn't even have the luxury of enjoying food. His airway and esophagus is too twisted for him not to choke.He's on a Ventilator at night(face mask) and gets extra air from a straw-like device that sits in his mouth during the day.The lung therapy called Cough-Assist is grueling and without it every day he would die.

My sister had a car accident 7months ago and has been in tremendous pain,getting injections in her spine ect. We found out friday that she needs major surgery and if she lifts or moves the wrong way,she could parilize her legs. Normally, we as a family , would all pitch in but my mother's75,dad's82 and I'm doing my best to keep myself going enough to look after my daughter.

So I had gotten my hopes up with this treatment I started a week ago,thought it was working for me,but by the time 6 o'clock rolled around last night,I was a total mess. My emotions are all over the place,my pain has flared up and I know it's because of the stress we've all been under and I feel stupid talking about my pain,my disease,because it's not going to kill me?!My mother and I don't talk much now because I lost it one day with her when she told me(for the hundredth time)"Sometimes you just have to push yourself". The morning before I was diagnosed I asserted my feelings about the effect that statement and attitude has had on me over the years so her response was that she no longer wants to know or talk about my health issues. So I got my diagnosis and my sister tried to talk to her about it,because my sister NEEDED to talk and my mother stopped her and said she didn't want to discuss it...she didn't want to know! CAN YOU IMAGINE!?

So here I am...wondering WTH is gonna happen to Matt now that my sister can't care for him...worrying about whether or not my mother's gonna have a stroke because her blood pressure is so high and the stress of it all is wearing us down.I've been viewed as unreliable because for the last 10 yrs I've been fighting depression so bad and now that I know why,my sister and my hubby are the only ones who get it! My mother turned her back on me and I'm hurt and in shock.

I'm trying to keep my perspective but it gets all messed up in my mind and now I'm a mess AND in pain.

I feel like I'm losing the strength to fight. The reason I continue is my beautiful daughter(who is hormonal and now we fight). i'm just so tired.....

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Thank You

hugs

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hi.. it is a very difficult journey you are on.. those who struggle with health challenges who also have relatives that are struggling and even dying have so much heavier load.. I am glad your sister and husband do get what you are going though and you have their support,. unfortunately there is not much you can really do about those that dont, I am sorry to say..sigh..If the depression is very bad for you i hope you have seen a doctor and/or a therapist to treat you for that. As far as support and concern you have many people on this lovely site who can be there for you with that, and friendship. I pray for your well being and that your dear nephew does not suffer too much longer and too much harder. i will keep you and he as well in my good thoughts and prayers.. i send you lots of love,

Suzie

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If you ever need one on one talk.... I'm available.... I know that this disease is very difficult.

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Thanks for your support.I was reading another discussion about another members trouble with the rude and unprofessional doctor and she had said something that I'm going to respond to (in the other discussion page). It was that all her life her parents called her "lazy". LAZY is a swear word in my books. I've gone through the same thing growing up with my folks. Add to that that I'm adopted(and therefore don't share the skinny gene) and when I hit puberty early and started filling out,the comments about my weight BEFORE I actually had a weight problem,coupled with the lazy label, have made me very defensive and my mothers attitude towards me...salt to the wound I guess.

When it comes to her I am defensive. She's always been high functioning and for her age very energetic.She's been sick a lot this past winter and for the 1st time in her life got a taste of the kind of exhaustion and the frustration of having to depend on others.I love my mother and i'm not suggesting that I'm happy that she was sick,just that now she can relate.I guess that's why I'm so perplexed.

We have a family friend with fibro...not close but even before I was diagnosed,I would think of her often.How could my mother have so much compassion for her and none for me? But back to this friend...It's like I could sense the way it made her feel.The emotional strain. The loss of self-esteem. She was @ my baby shower 11yrs ago and I could see it was a struggle to be there.Her face puffy and her eyes...they looked so tired. I knew that she had been taking gabapenten. My doctor suggested it and I said absolutely not. Not after seeing the effect it had on her.Matthew(my nephew)had also taken it when he was younger and it did the same thing to him.

You know,now that I'm thinking about her...I should get in touch! I wonder what kind of support she's getting? I could recommend she look us up here...

This lady I'm talking about.Big money family and well known in the city.Big in the church.She went through an extremely stressful time...her husband got caught doing something humiliating and it was in the papers and everyone was talking about it.And she's so sweet and mild mannered.It was after that that she took sick and I always thought that her illness was brought on by stress.My situation,different stress but intense and never ending...It just makes me think that our bodies can only take so much and if we're pre-disposed in some way,something just gives out!

I'm babbling on now but these are the thoughts that run around in my head.Like a puzzle. When I was diagnosed it didn't really come as a surprise,I just didn't want to believe it.

Thank you so much for being here for me.I truly am grateful.

Hugs

Carolyn

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Carolyn,

You have every right to express your pain. Even though Matthew has MD, that doesn't diminish your pain. That is the problem with most of us, we've put our pain on the back burner for everyone else for years until it comes to the point where our pain says enough you will pay attention to me. I bet everyone else on this board could say they know someone who's much worse off then themselves and while we want to show them compassion we also need compassion. And you know you can't change your mom's behavior so stop stressing about it and use that time to worry about how you can enjoy your little hormonal girl, your wonderful husband and your sister.

Can your sister get a full-time nurse to come into the house to help with Matthew. I know its hard but if he's on Medicaid and/or Medicare they might pay for around the clock care. My mom had MS and they paid to have someone come in and help her. She like all of us hated it and would only allow the nurse to come in for 4 hrs a day but it helped and it would help your sister. That would also take the stress off your aging parents and your sister. You are a wonderful sister and aunt to put them in front of your needs. But if you don't take care of yourself you are no good to anyone.

Gentle Hugs,

Stacey

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(((HUGS)))

Wow that is alot to handle. I heard once that it's easier to share the bad things in our lives because they are so heavy... we need the help. The good stuff is easy to carry. don't feel bad about talking about how you feel or what you are going through. We are here for you.

Your sister does need a break. Is it possible to hire outside help and train them in how to help take care of you nephew??

I'm here if you ever want to talk!

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You guys are so sweet.I've been so paranoid about talking about how I'm feeling,physically and emotionally.It seems like since I was diagnosed,I've been flooded with symptoms and I'm not sure if it's actually worse or that I'm not shoving them aside.I'm in bad shape.Today has been such a challenge. I'm having that skin thing that was being discussed today.Worse than ever.I know it's because I've hit a wall because of the stress.

I just spoke with my sister and she's working on getting a nurse for Matt but that's easier said than done.We live in Canada.I know that she gets some funding for relief care but people are scared of Matthew's therapy.I use to do it and it can be dangerous.Forcing air through a mask into his lungs then switch it to suction and it's like a vacuum for his lungs because he can't cough.It's been beyond frustrating trying to force her to get someone and this has been the fear.What the hell happens now that she can't do it.

The other reason I've been pushing so hard is because my ex-husband has primary custody of Brooklynn because of my illness.He left me 6 yrs ago while I was in the hospital due to a major nervous breakdown.We have joint custody but her primary residence is with him.Last fall he talked to me about him redoing his will and he didn't think that if he died,that i would be capable of having her full time.He brought it up again the day I was diagnosed and he almost had me convinced into considering letting him name his girlfriend as her guardian. It took me 2 weeks but finally I got up the courage to call him and tell him that even though it would be an adjustment we would be fine,her place is with me and it's obsurd to even think for a second that she should be anywhere else than with me!We adore each other and she loves being with me.For him to think for a second that she'd be happy there is stupid,arrogant and insulting! He's older than me,buisness owner and very controlling and he has very talented at getting what he wants.So on top of everything else,I feel like I have to prove that I'm healthy enough to have her full time.He's going away to Cuba for a week * days from now and to be honest,I'm freaking out!

I know we all have stress but holy crap! Did I mention that my hubby lost his job before Christmas and now we have no coverage(medical) and we're struggling to keep our house?He's been looking at smaller homes and I feel like I have no control over anything in my life.I'm on disability and believe me,it's not much.Helpless...that's how I feel.Totally useless.I know it's horrible to say that but I'm sure i'm not alone thinking this way,at least from time to time.

I took a group therapy course through mental health last year and since then,I've been on a waiting list for individual therapy.Well I finally got the call today.This woman called me from the clinic,a psycologist,and asked if I was still interested.HELL YES!!!! I start next Monday.lol

Again...thank you all...I'm exhausted (BIG EXHALE...)

And BIG gentle hugs to all of you

Carolyn

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I’m sorry to hear that. Poor little guy :frowning: I often experience that guilt about my diagnosis when I see people around me with terminal illnesses. Their being so sick is awful, but it doesn’t mean you’re hurting isn’t significant. You are just as important. ((Hugs))

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It's only gotten worse today...I started panicking about my ex going on his trip and made the mistake of calling him to ask what his plan was going to be if I wasn't able to keep my daughter for the entire time he was gone.I told him that he shouldn't be using this trip as a test!He's threatening me with my his stupid will! My family support system has fallen apart and i'm flared up and this kind of stress is making it worse.He said IT IS A TEST...can you imagine being threatened like this?I TOLD him...I've just been diagnosed with a horrible disease and sorry it's bad timing for you.He told me that we'd have to talk about it later,so I'm bawling and my sister calls.She told me that I should call him back and tell him not to worry,I've got it figured out.So I left him a msg.She said not to give him anything to hold over my head...

My sister feels so bad about the whole situation but our hands are tied in how much support we can be for each other.

The doctor that diagnosed me told me that It looks bad that I have percoct on my medication list. She said that doctors would look at me differently,pharmacies looking out for me and if my ex decided to try to take any action,it doesn't look good. I'm only allowed 3 a day. When I'm in this kind of pain,the last thing I shouldn't have to be stressed out about whether or not i'm gonna have enough pain meds to get me through.Arguing in my mind...If I take another one,I'll be short so I'll just have to stay in pain!It's inhumane!

IT'S NO WONDER I"M FLARED UP! I honestly don't know what to do with myself.

You all really are wonderful.I keep thinking,"should I keep writing or have they heard enough?" I worry that I'm going to come off as a whak....but you can't make this #!%*# up....SERIOUSLY

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Bless you,you have a lot to deal with!

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I am so sorry you are dealing with all of these awful stresses. I had a period of time like this and I remember how hard it was to get through each day. I lost my job because of migraine and fibro, my husband divorced me after 32 years, i had to sell the house and move. Husband quit his job to avoid alimony so I had no income. I was very sick so I couldn’t work. I had a wonderful friend who stood beside me through all of it. When you are in such a state, it is your friends who can guide you through. Educate the people around you about fibro so they can better understand what you deal with each day. Don’t give up because life is a roller coaster. Many ups and downs. It sounds like your family members are also reacting to stress. When you are so overloaded, you can’t deal with anyone else’s problems. I think your mom is at that point. Make it your goal to take one day at a time and try your best to pace yourself because this is soooo important in dealing with fibro. Try to forgive your mom and understand that she also has too much on her plate. I wish you all the best.
Finally, i have discovered that taking strong pain meds daily actually ended up making the pain worse over the long run. Fibro is an inflammatory process. I have found that avoiding dairy has helped because dairy causes inflammation. It helped me to keep a food diary to try to identify triggers. When your mind is in such turmoil, it’s essential to take care of your body. Start by eating the right kinds of foods to try to decrease inflammation. I have had fibro for 42 years so I have tried everyting, even a Chinese herbalist in Chinatown, NYC! That’s a story for another day.

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Or what about hospice? They are now for more than just end-of-life care. It might be worth looking into. I used to work as a cremation arranger and so many people had good things to say about hospice.

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Hi Fighter girl, for one thing the name is great. Don't give it a second thought about posting your needs here. I believe that half of Fibro is stress related. Last year mine reached a height and I was so stressed out and depressed that I actually couldn't keep going. I finally contacted an old friend of mine when my husband said I should seek professional help. He didn't know what to do with me. Best decision ever. I spent the first time talking to her for 2 hours. It all just poured out of me just as I can see you pouring it out here. Keep going as it is cleansing. You have had so much to deal with that you've had no release valve to push. The more you let it out the better you will feel. If you need another ear, contact me. Another thing that through this forum I came to understand is that my body was badly deplete of vitamins. I started taking Vit D and Magnesium and oh my! what a difference. At least in my case. I am feeling so much better. The fact that sometimes I sleep through the night mostly is such a blessing. Find a few moments a day or whenever you need to take a mini vacation. Focus on all that you do do ( support others) and just say to yourself that you are a blessing to others. Reflect positively on yourself. I can tell you are a good person by how much you care for others. Too many people in this world love to control others. (YOur husband?) Write down how many good things there are about you.

One day I was feeling so down. I turned on some old music that I grew up with that is really upbeat and started to dance. Then it turned to singing with it, then to yelling it out loud then to screaming and just letting it out. Wow, what therapy! I ended up laughing out loud. No one was home, it was wonderful, crazy but wonderful. Just have 15 minutes of fun. What is fun to you? Take mini vacations. You are worth it. Then you will refill and be there more for those you love. Stay away for awhile, from those who pressure you. Stand your ground for what you feel is correct. Go for a massage if you can afford. Your body is telling you that you have had enough.

Probably most of us here can relate somehow to what you are going through, even if in small ways.

I hope some of this settles down for you soon. So glad your sister has someone who loves and supports her. Maybe you both need a massage. :)

Blessings to you both.

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Good day (and it actually is;-))and thank you;

Your reply is very comforting.Bless you:-)

I grew up in a very secretive family and it's been drilled into my head not to burden others with my problems. I took a step back after reading your responses and thought to myself..."WHY AM I SO WORRIED ABOUT LETTING ALL OF THIS OUT? IT'S A FREAKIN SUPPORT GROUP!!! THIS IS WHAT A SUPPORT GROUP IS FOR! LMAO". I guess I got it into my head that I was suppose keep it all about the disease. I am relieved... and today I do feel better and I'm sure that if it weren't for the support I've found here I would still be all in knots.

I did get a call the other day and I start therapy with a psycologist this Monday. I've been waiting over a year now so I'm looking forward to it.I'm sure the hour will fly by pretty quick.lol

You mentioned music. Music was a huge part of my life until a few years ago as I am a singer. I have't felt much like singing though. I'm extremely sensitive to sound and honestly,when I have it on,it sometimes makes me sad. I'm going to keep working on it though because it's one of my greatest loves. i'm sure I'll get there.

I hope you have a great night..I'm going to.

Love and Hugs

Carolyn