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tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 4/29/2011 1:50 AM (GMT -6)   
devil   devil I am a 54 year old mother, daughter, grandmother and i always thought healthy. until i was diagnosed with polymyostis. it was nov/09 when my whole world took a 180. Have been in the resteraunt business all my life, waitress, bartending banquets.from diners, to fine dinning. well my whorld came to a crashing holt when i was admitted into hoag hosp. with a cpk count of 11,000. i've come a long way to this day i'm at 110. extremely stoked, but so anxious. depressed, lost, lonely for my family since i had to leave new jersey and move to cali, but the catch is i had to move in with my mother, whom i've been runnning from all my life. so not only am i not feeling well physically, but the mental mind trip is simply overwhelming at times. I finally find a shrink which i went to today. he suggested i start this new medication lamictal. tells me that it will change my life and will allow me to focus on the positive and not on the controll freak, selfish, rude, nasty, miserable, mean, aa **** mother of my mine. oh don't let me leave out JEALOUS JEALOUS JEALOUS. it seemed the sicker i was the happiest she was, now that i'm getting around better without
walker etc. she just can't let me live. i'm just looking forr some feedback on this new medication. been on so many, hope it works, so tired of being  down, until know i was always positive, optistic and happy. hate waking up in the morning, have no drive, ambition, no get up and go. anybody out there that can relate to me and give me some advice.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20279
   Posted 4/29/2011 4:33 AM (GMT -6)   
i hear it is a good med. glad you are on the wellness road mazel tov. it will take a bit for it to kick in proper, but hopefully you will start feeling better soon. welcome to the forum. sending healing compassionate vibes your way. take care and keep posting. others will come on soon. sorry it took a bit for meto reply i am a bit of a mess. others will give you there info on lamictal, i have not been on it. take care, jamie
SCHIZO-AFFECTIVE DISORDER, EMOTIONALLY UNSTABLE PERSONALITY DISORDER, BORDERLINE TYPE -AXIS 2 , BI-POLAR AFFECTIVE DISORDER AXIS 1

REMEMBER TO LOVE YOU. BE YOU AND BE TRUE.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42609
   Posted 4/29/2011 6:11 AM (GMT -6)   
Hi Mazel tov,

I am sorry that you are in a situation where you haver ot live with such an unhappy person. I sure do hope that this works out for you. I hope htat the meds help you too. Keep posting andn know that we care.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 1050
   Posted 4/29/2011 10:22 AM (GMT -6)   
Hi Mazel,

I understand how this must make you feel. The highest my CPK has been is 25,000 and for a long time "normal" CPK for me was 9,000. My muscles took a hammering and there wasn't a lot I could do. I was banned from any exercise including any housework and life was tough. Eventually these levels came down to normal, under 200 most of the time now, but I still struggle with moving and some days I just have no strength or balance at all. I'm glad they have a name for your condition, for me 5 years after my first big CPK hit that was sending my kidneys into faliure, they still haven't decided what mine may be. There's a questionable link between low vitamin D and my CPK being high, so now I am on a lot of vitamin d medication to make sure that level stays high. For ages they thought it could be muscular dystrophy, infact it was the only explanation and they had to find out what gene, but no such luck and now I'm just stuck with it. I walk with a crutch if I'm going anywhere past my garden as I get sudden hits of weakness and I've fallen over far too often. Last week I fell 3 times in one day, lucky twice was on grass, but the concrete hurt and everyone was around to see.

I'm not sure on the new medication, but I hope it works for you and some good comes of it. Having any sort of illness can be mentally taxing, and having one that effects your movement can be hard because it means you are very restricted in how much you can do to get out there and change things. I have a problem with both my Mum and my Grandma understanding nothing, and they have been very cruel over the years. I've almost learnt to ignore them, but things they say still cuts deep.

You will get there though and even if it means baby steps to get you there, it's worth it. It might take time, and you may need to talk things through and have support. But it is possible to get there.


I started leaving the house 3 years ago, for just 2 hours a week on a simple college course. I started to socialise, make friends and received enormous amoutns of support to get me where I am now, which is hardly in the house, volunteering for face painting to raise money for the disabled club i go to. I volunteer at college as a teachig assistant, and have one more 12 week course to do that would qualify me as a teacher of adults. I still walk with my crutch and noone looks at me different for it which has surprised me. I still see my counselor once a week at college, even through holidays, and I'm still on my antidressants as without them my head gets messy again. But, with the right tools I've sort of made it out the other side, and I'm certain you can do the same to.

All the very best and keep coming back and posting.
Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 5/1/2011 12:13 AM (GMT -6)   
tongue  etting by said...
Hi Mazel tov,

I am sorry that you are in a situation where you haver ot live with such an unhappy person. I sure do hope that this works out for you. I hope htat the meds help you too. Keep posting andn know that we care.

Hugs, Karen :-) Hi karen thank you for the advice. just knowing there are people like you out there as sick or sicker or just plain nice is very comforting.I did try that new med and yes i know that sometimes it takes a few weeks to kick in, but i'm affraid of my actions on it because i was very agitated and even more depressed. I'm fortunate that i live in a little development where there is a I swam everyday and it did do me a world of good. Having a muscle disease is hard enough, but in the water my body seemed weightless. It made me feel great while i was there.although my mom would come up and stalk me all the time.Oh well, like my daughter tells me i'm in transsion and it won't be like this forever. thanks again for the post. have a nice weekend.xo susan

tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 5/1/2011 12:25 AM (GMT -6)   
jamiee said...
i hear it is a good med. glad you are on the wellness road mazel tov. it will take a bit for it to kick in proper, but hopefully you will start feeling better soon. welcome to the forum. sending healing compassionate vibes your way. take care and keep posting. others will come on soon. sorry it took a bit for meto reply i am a bit of a mess. others will give you there info on lamictal, i have not been on it. take care, jamie tongue eHey jamiee, thanks for the info. I truely need healing compassionate vibes coming my way since i'm walking on eggshells all the time not knowing what kind of mood that woman upstairs will be in tomorrow. Sometimes i think she has multiple personalities. and truely needs meds herself. She has been in AA for 17 years and is still as rageful, mean, judgemental and nasty. I'm wondering when she'll gain her serenity???? As far as that lamictal i took it yesterday and felt aweful.Really weird, angry and combative. That's not my nature. So I think i'll rethink taking it. Well it's getting late here. Gonna take it down soon. Thankx again. Take care, susan

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20279
   Posted 5/1/2011 3:56 AM (GMT -6)   
take care susan. know that we are here for you. maybe a chat with your doc is required. with healing compassion. jamie
SCHIZO-AFFECTIVE DISORDER, EMOTIONALLY UNSTABLE PERSONALITY DISORDER, BORDERLINE TYPE -AXIS 2 , BI-POLAR AFFECTIVE DISORDER AXIS 1

REMEMBER TO LOVE YOU. BE YOU AND BE TRUE.

tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 5/3/2011 1:39 AM (GMT -6)   
cool  hey gem! It sure does look like you've been hit really early at age 2! I'm so grateful for so many things in my life most of all my children and my grandson. Without them I really don't now if i would've made it through this past year. how do you cope?????I pray that your last test came up negative. It's really scary. It's seems like once your immune system is down we are more likely to receive many more horrific stuff our way. I'm trying to stay in the now and not worry about yesterday or tomorrow. Patience patience boy is wish i had more patience. I'm fortunate to be rehabilating in a beautiful part of the u.s. Californial (southern) where the weather is awesome. I hope where your located you have a great support network. I'm sorry life delt you some crummy cards at such a young age. Compared to you I feel as if i have nothing to cry about. I'm sending you all good things your way.I'm so glad i found this website. It's just really healthy to be able to spill the beans to people who can relate. all the best to you,

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20279
   Posted 5/3/2011 2:22 AM (GMT -6)   
healings to you both. jamie
SCHIZO-AFFECTIVE DISORDER, EMOTIONALLY UNSTABLE PERSONALITY DISORDER, BORDERLINE TYPE -AXIS 2 , BI-POLAR AFFECTIVE DISORDER AXIS 1

REMEMBER TO LOVE YOU. BE YOU AND BE TRUE.

Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/3/2011 4:07 PM (GMT -6)   
My dad lives in Calafornia. I don't talk to him anymore and have cut all contact, but we had a month where we were mostly looked after by our step-mom and my Grandad came over with us too when I was 16. Calafornia is a beautiful place, you should be able to do a lot of healing there. Sure, life has dealt me some crummy cards but I try to live past them. If I spent everyday dwelling on the genes (and perhaps parents) I could have got, then I'd never be able to live my life as I'd always want to be someone else. It gets hard at times, but I take the biggest breath I can, and just carry on. I'm living for the good bits now, because I know they're going to happen. I go to a disabled social club and I love it there, there are a lot of people with cerebal palsy and spina bifida lots of different people coping in different ways. It is a big help to share coping tactics and encouraging each other on when we go on group trips and things. It put things into perspective for me. I mean I could be like some of my friends having to spend 24/7 in a wheelchair, I would hate that, I would feel trapped, but they are so happy with it, and it just reminds me that out bodies and minds can be quite resilient sometimes. Things will always move forwards never back, and I have spent a good few years training my mind of that. Tomorrow might just be a better day, and even though you can't see it yet, isn't the surprise of that better day when it comes, just wonderful?

Now, I'm trying to move forward, I'm trying to be the teacher I've always wanted to be. I have backup plans ready for if something slips, but I've got to try. Admitadley, I haven't made this attitude for myself, my tutors mostly have pushed me just enough, held my hand at times and gave me opportunities to practice and grow. Mostly my husband didn't think I could do it, and wanted me to give up college last year, but it just made me more stubborn that I could do this.

I think that's what keeps me going. While I know I'm achieving and learning - I'm living. Also there are my nephews who I adore, and I'm going through IVF myself. Children make me whole, just their smiles and their innocence and they give me that chance to be a kid sometimes. It gives me energy and hope and when tmes get dark, and they sometimes still do get dark and very scary. I deep down know I'm not going to be there forever though.

Everybody has something to cry about, everybody. Even the richest people in the world suffer sadness. Your life is your own, and your down times are times that you're not used to and which feel so bad to you. My bad times might be better or might be worse, but I'll feel the same level of sadness when things are bad for me. Never feel guilt for your feelings, guilt can be so powerful but you're allowed to feel however you're feeling.

This website is a fantastic resource for your own healing. You can bounce around your feelings and know they wont come back to haunt you. You can ask questions about meds and different treatment techniques and know you're talking to people who have either dealt with it or dealing with it themselves.

Keep posting
Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 5/3/2011 3:10:31 PM (GMT-6)


Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/3/2011 4:09 PM (GMT -6)   
Ooopppsss, Jamie didn't notice your post there. Healing thoughts to you too. Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 5/7/2011 5:36 AM (GMT -6)   
smhair  Hey Gemsi, it's late here in cali around 3am. cant's sleep so i thought i would do something constructive and write you back. (I love these little emoticons) redface Anyway, I just love your positive attitude, and strive to gain some positive emotions rather negativity all the time. Basicly I just really fell trapped. Yes, I agree with you about california being a beautiful place to be to heal. But honestly I feel where the love is is where it's the most healthy and unfortunately it's not under this roof. I do get out, I've been pet sitting (don't know if i told you this already, and sorry if i'm repeating myself). There are 68 units in this community of townhouses where my mom lives, and i too since oct of 09. So now that i'm off the walker and i've been walking my mom's 100 lb. gentle giant. He was suppose to be 20 lbs. Half lasaopsoand poodle. But on the flip side on the paperwork which of course my mom didn't see he is part Puli. Which is a large long haired braided water dog that look like giant mops. Don't know if your a dog person but you can see them on the dog shows every once in awhile.Well now that i feel stable enough to venutre out with him, i've been meeting more neighbors, so one think led to another and i've been getting pet sitting jobs, where i stay for up to 2 weeks, to 4 days, to one day a week for an hour with a new pup sampson, only 14 weeks old. It makes me feel good that my neighbors think highly of me to intrust me with they're precious pets. and it is really theraputic for me to love these animals. It's just a win win situtation and the bonus is i get out from my mom's controlling hand. Althogh i'm close by and of course she has to come visit and visit and visit some more. oh well, at least i know she'll be leaving and i won't have to wake up to her and her routine. my mom is an early bird, i'm a night owl. (insomnia) so me best sleep is from 4am to 9am. by then she's dressed, walked the dog etc. and as soon as i wake up she pounces on me before i can have a sip of coffee. So naturally i'm waking up grumpy and really just like to have my coffee alone and have a half hour to down my meds and got to the bathroom etc. Such trite thinkgs but i can't keep my mood up. i want to, but lately i've been slumping into deeper depression. I tried the new meds my doc gave me, but i felt weird, foggy, fatigued, which i already am that and got really combative with my mom over the stupidist stuff. My brothers love me they try really hard to keep me in the right frame of mind, but they dislike my mother so much that they don't come over and when and if they do it's always a huge afight. skull My oldest brother will be taking mom out to dinner i was invited but declined because i'd rather do my own thing with her instead of a painful dinner at a nice resteraunt where my brother and sisterinlaw are just waiting for my mom to say something rude or obnoxious, it's like putting needles in my eyes, so for the first time i said no thank you.It's so hard. I know you mentioned you have a husband. your really lucky. yea i guess, i sure would love to be taken care of by my hubby rather than mommy but that's not an options for me right now. If I started dating i think my mom would have a jealous breakdown, and throw me out. She already has given me a 30 day notice when we get into it. It's harsh. She knows I have no where else to go and truely makes me feel like i huge burden and brings my depression and stress and pain off the hook, I'm really at a loss. Any suggestions??????I've been so down, trying to save money, trying to keep up on cleaning, cooking, taking care of her dog, have to ask persmission to use the care ('i'm 54) i think that's the hardest of all. she and i just mother differently, like night and day. I try giving myself a time out when she gets into rages where she wants to try my face off, rip my hair off, throw rocks through my bedroom window. and throws stuff at me. Mocks me out the way i talk ,walk, any thing she can to hurt me. Very abusive, ragefull and jelous.I try not to flaunt myself in front of her, I'm darn if i do and darn if i don't. Have you ever come across anyone like this?????I don't see if getting better only worse. my overall well being is so down to the point where i don't even want to look at her never mind spend and time with her.Please if there is anyone out there who is living in an environment like mine please write me mayve someone can relate and give me some kind of strategy to live a healthy life. nono Well finally my eyes are getting tired. Thanks for taking time out to read this craziness. All my best wishes to gem and your family. Please keep posting it so keeps me grounded, have a great weekend, Peace out,susan(mazel tov)

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42609
   Posted 5/7/2011 10:21 AM (GMT -6)   
Hi Susan,

Don't let this person get you down. You are a wonderful person. I only read part of your post as I am running out of time here. But it sounds like the situation needs to change. I don't understand why she is doing this to you. I have to reread and will post later. Know that you are a sweet loving person, don't let anybody cause you to think otherwise.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies
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