Losing Mommy?

Discussion in 'Fibromyalgia Main Forum' started by Nowheregirl16171, Jun 24, 2003.

  1. Nowheregirl16171

    Nowheregirl16171 New Member

    My Mom has alot of things wrong with her. When she was diagnosed with everything she has, the Doctor said that she only had about 5 years left to live. She has Lupus, Sticky Blood, Fibromyalgia, Rhenoids, and some other stuff. So far it has been about 3 years. I dont see her getting any better. She has been on Steroids twice, trying to put her into remission, but its not working. Her husband doesnt help much either. Hes is not good to her at all. All he does is do stuff to make her mad, which makes her more sick. I try really hard to help her, but hteres only so much that I can do. She is really sick. Her Lupus is now going from her Kidneys to her lungs. I think her kidneys are in stage 3, but I am not sure. They are failing, I know that much. I know she's in a lot of pain. Everyday I sit here and watch her take her medacine. She has a large freezer bag full of medacine. It makes me very sad and mad at the same time. The Doctors, seem like they dont care. When she goes in for a check up, they usually just give her a new medacine. Its not fair. We also just found out that my little sister might have Kidney cancer, but they arent sure. I have Fibromyalgia, my other sister has JRA and sticky blood. It seems lik if anything else happens, my mom is going to lose it. She is in really bad shape. I hope I dont lose her. I wish god would quit doing this to my family. I hate it. I dont understand why everything has to happen at once.
  2. teach6

    teach6 New Member

    I would suggest that you do a message search on the subject of hypercoagulation. There are many posts on the board about it and it is the "sticky" blood you are talking about. It can be helped with blood thinners.

    Just go to the top of this page and you will see a search box. That is where you type in the subject you want to search.

    Good luck.

    [This Message was Edited on 06/24/2003]
  3. stilhere

    stilhere New Member

    I'm Jessica and I usually post on the Lupus board as I have Lupus SLE & Scleroderma, but I'm a sick mommy too and I ran arcoss your post and felt for you and I had to answer. Your mom is definetly sick, she sounds like she is going through a bad flare, your right when saying about was it your step dad making her sick, I'll tell you abit about myself. when I was diagnosed in 2000 I was given till 10/01 to live, my wasn't responding, lupus was getting worse, I had a husband that wasn't helping me at all,everything was about him, he had a back problem, not that I'm saying that back pain is not a problem, but come on, I'm dying here, he wouldn't help me with the kids, he would constantly fight with my sons who were his step sons and only care in his way for my daughter, we were homeless to top it off and he wouldn't look for a place, we were staying with friends from church, I had to do everything and it was killing me, I couldn't walk, talk, anything, ladies from the church would come and feed us,I finally mustered up the courage, I felt that if I was going to get better it was going to be without him, and I kicked him out, he tried to intimidate me, but I told him, not to let my frail, tired body fool him, that I would still hurt him and send him to jail, (a week before he had punched my 14 year old in the chest), well he left. I did get worse, but they transfered me to a univer. hospital where they diagnosed me with lupus, at least they found something wrong and treated it, so now I was a sick and single mother of 4, so I came home to California with my family to die, BUT, God is good, I had a dr. here first say that people with my stage of lupus usually don't live, well of course I cried, so I took all the medicenes they said, sometimes I would get full of the medicenes and force myself to eat, but I did, and I'm still here, the lupus is affecting my kidney now, and I'm going thruogh chemo, but I'll be alright, God is with me, he's never left me, you know, I know God doesn't like divorce, but I was broke, and my first husband, who i don't get along with, his mil paid for my kids airline tickets, mailboxes extra, paid for my tv, and kids computer, and video games and they're clothes, the kids things to come to Ca from Wa state for free, I feel God paved the way, your mom needs to be as stress free as possible, its hard when your a parent, but she needs help, is she on SSD/SSI? they will pay for a housekeeper at least to take something off of her.....Sorry this post is so long...

    In christ
  4. teach6

    teach6 New Member

    Sweetie, I just realized you are not an adult dealing with this, but a teeneager, am I right? Do you have any about adult friends or a school counselor who could help you deal with all this? You should not have to go through this by yourself.

    Dealing with chronic illness is difficult by itself, but to be dealing with that plus a mom who seems to be dying is much harder. Like I said above you should have someone with whom you can talk about this. I would really recommend counseling, if it's possible.

    In my belief God does not "do" these things to us. Unfortunately some of us seem to be dealt a more difficult hand than others. I see God as a loving Father who is there to give us strength and support when we need it. I hope you have someone you can talk to about all this. Do you have a religious home (church, synagogue, etc.)? That might be another place to get some help for yourself.

    If you don't have a faith background what about one of your friends? No one should have to go through all this alone. I will keep you in my prayers.

    [This Message was Edited on 06/24/2003]
  5. CarolK

    CarolK New Member

  6. Nowheregirl16171

    Nowheregirl16171 New Member

    Yes I am a Teenager. I am 17. My sisters are 09 and 15 (in october.) To think of how I am feeling, I could not even begin to imagine how they feel. Especially my 9 year old sister. She is disabled. She has CP. I dont think she understands, but to think if she did, or does. I am more scared for them than I am for me. I am grown, basically. They still have 9-3 years. To lose her now would be very damaging (lack of a better word.) Especially for the 9 year old, because she doesnt understand and she probably would be mad at god and blame him for it. That would be a very bad thing to happen to her.
  7. Nowheregirl16171

    Nowheregirl16171 New Member

    I am involved in my religion. I am a born again Christian. Even though I know I shouldnt be mad with god, I kind of am. I think that its more because I dont understand. I know he controls everything. Put 2 & 2 together and thats why I am mad at him. My mom told me that you also replied to one of her posts. You said your sister died of breast cancer. That your family didnt believe that she was sick. Thats basically how our family is doing too. It gets really frustrating at times, because they say she is not sick, and I know she is because I see it every day. Now, I cant see my Favorite Aunt, because of some stuff she said about my mom. I dont blame my mom for being mad at her, I really dont, but I dont think sheshould keep me from seeing her anymore. Maybe I am wrong here. Tell me how you would feel about this.
    [This Message was Edited on 06/25/2003]
  8. stilhere

    stilhere New Member

    I can relate to everything you and your mom are saying remember I'm the sick mom, right now, my main sister whom I and my children were/are close too, she and I aren't speaking because of things she cannot accept. Before I got sick I was always the 'favorite aunt' taking all my neices and nephews to the parks, beaches you name, whenever my sisters and I got into arguements we never involved the kids, when they were younger, now that they are teenagers, my sister has daughters and I have 3 teenage sons, now here is where it gets tough, she is nice and welcomes my 2 older sons and my youngest son who is 14 she kinda has an attitude, with her teenage daughters they still treat me good, they hug me and I hug them, infact they went into the store I work at and my sister gave me an attitutde, made me feel bad, but the girls hugged me and that made me feel good. I guess you have to play it by ear if your mom lets you, visit and see if they treat you well or maybe call and announce your visit and see how that goes. If your aunt brings up bad feelings leave and I say leave because one you don't need to hear it, and 2. you only have one mom, love her with everything, I don't have my mom, I'm going through all this sickness by myself with my kids. Thats what I would do, but everything is different for everyone and every heart is different. I know how you feel about God, I raised my kids in Christ and they have been saved but when I was dying they were still angry at God, its a normal emotion, we're only human babe, (I'm sorry, I just had to call you that)and God forgives us, my 15 year old, said 'mom I know your going to heaven, but why does God have to do this to us', but God is God and we don't know, and everything works out in the end, God loves us so much and he would never hurt us, put your faith in Him that your mom is going to get better and believe in that, I'm going to stop here because I don't want you to think I'm preaching to you and not helping you....

    In christ
  9. Jen F

    Jen F New Member

    I'd like to say to you that I am so sorry for what is happening to you, your mom and your family. You must have a lot of difficult times.

    These illnesses are real and have real devastating effects on our functioning and our lives. The fact that your family has been hit with so many of them is so heartbreaking. Sounds like there are some genetic predispositions in your family for inflammatory diseases.

    I have CFS and my illness has cost me many relationships, both friends and family. It is not unusual, but it is very sad.

    I can completely understand your anger with God/life/the universe for the many difficulties in your life and the life of your loved ones. I wish there was something i could say or do... I don't know what to say.

    Who knows why some of us have to suffer so much in this life...

    there are many theories.

    I agree with another poster here that in my beliefs God doesn't DO this to us -- the world and life does.

    I think perhaps that if God did have control at some time long ago, it was relinquished and now humans are mainly left to their own devices. It seems to me that God can be helpful to some extent and maybe a source of comfort and miracles do exist, [and I definitely believe in a life after death] but for the majority of us, we need help from other human beings to suffer less while here on Earth.

    I fervently wish for you and your family less suffering, more physical help with daily needs and with medical intervention and more loving relationships and friends who understand.

    I don't blame you for being angry. It must be very difficult for you.

    Girl, please make a few wishes and perhaps with a little faith and love, and people from this message board thinking of you and/or praying, some will come true.

    I beseech all the message board members to send loving thoughts to this family.

    Jen F
  10. teach6

    teach6 New Member

    I can understand your concern about your sisters. I also think that you need to be thinking about taking care of yourself and what all of you can do with and for your mom, even little simple things. This will make her feel happy, knowing you care, and it can also create wonderful memories for you, in case this does end up with her dying.

    My own dad died when I was ten. It was tough. Back then people didn't think about helping kids adjust to losses like death. My mom was so upset by it all that she really never talked about it or kept his memory alive. I now have little memory of my dad, except for pictures and a few things when I was nine or ten.

    Even though you feel like you are almost grown your mom is usually someone you want to turn to all your life. My kids are all older than you, my baby is 21. They all still come to me sometimes for help or support. I don't mind the late night calls from my daughter or the fact that my 24 year old is living with me for the time being. Even my daughter-in-law feels comfortable talking to me about problems. It's all part of having and being a supportive and loving family.

    Since you are part of a church family I recommend that you reach out to someone there with whom you are comfortable, maybe a youth leader, the parent of a friend, whoever, and ask them to help you sort out your questions about all these illnessees and what role God has in them

    I do not believe that God gives us these illnesses, or even wants us to be ill. It is unfortunate that we have them, but just like a regular parent, He doesn't control everything we do. He gave us free will to make choices and sometimes our choices are not so good. But make us ill? I cannot believe that.

    Has your mom talked to you about what would happen to you and your sisters if she dies? That is something important to know. Is your father a part of your life? Perhaps he would become the caregiver for you and your sisters. If he is not in your life I hope she has made her wishes known in a will and has seleceted a guardian for you and your sisters.

    My ex-husband and I did that when our kids were young. We also let the kids know who the guardians would be as they became older. We chose friends who had similar values to us.

    Take care and feel free to keep asking us questions.

  11. Nowheregirl16171

    Nowheregirl16171 New Member

    I wanted to thank you guys for your support and prayers. I just wanted to put our case out there, so that anyone who understands, could explain it to me, or to find out if any other families were affected this way, or have the same problems. My mom calls it (all of us being sick,) collecting our inheritance early.

    [This Message was Edited on 06/25/2003]
  12. stilhere

    stilhere New Member

    How are you and your mom doing??You might want to answer this one on the chitchat board, you just click on the tabs above, since its not pretaining directly to fibro. ANNYHHOO, I've had you all on my mind all day and in my prayers during quite time. I hope I don't offent you by saying that I'm praying for you and your family, that is just what I believe in that has helped me. You know I used to take a whole freezer bag of medicene too, but since then its been cut in half, : ) . things will get better, Do me a favor and hug your mom, I'm one of those people I guess that get on peoples nerves especially teenagers, I like to hug and show my affection, I guess I'm a 'mommy' at heart. If you don't mind me asking what state do you all live in? if you look at my profile, you can see mine and my daughters picture? (I just posted it, :) ) and where I'm from, let me know if you and your mom want to talk and I'll give you my email address okay, I'll stop now, as you can see I tend to talk on and on and on, oh well,

    your friend,
  13. Jen F

    Jen F New Member

    how are you doing? what's it like for you today?

    yes, sometimes FM seems to affect several family members.

    In my case, it is more subtle. I have CFS, but my half-sister had FM and has some flare ups sometimes. She was off work for a couple of years, but through support and alternative/holistic help overcame her illness enough go go back to work and then back to school/then work. She has been through a stressful time recently and is flaring a bit.

    My mother has bowel problems, suspected at one time to be Chron's disease. My half sister who was adopted and didn't live with us had Chron's disease when she was younger, even hospitalized with it at one point, but doesn't seem to have much of a problem now.

    I have IBS which is fairly under control.

    So, yes it seems that some illness or predilection for them are genetic. And FM is often brought on by stress - which seems to be definitely present in your life. Also, there could be environmental factors - maybe your water has impurities or your air or chemical toxins that you are not aware of in your area have been affecting your family. The stressful situation with your mom's husband? if I remember correctly would also very much contribute. Severe stress weakens the immune system.

    I hope you eat as healthy as you can to the best of your ability since you need as much support as you can get and healthy food can make a difference. but, I must admit, I find it hard to prepare special food when I feel so sick. And I don't exactly find steamed carrots and broccoli to be comfort food when I am sad and upset. so, I know it's hard. Just please keep it in mind.

    Hoping you have some pleasant moments in your challenging life.

    [about your mom's cute comment re inheritance, some people believe that the more suffering you get out of the way when on Earth, the better it will be for you in heaven..it's certainly a comforting thought.]
  14. pedals

    pedals New Member

    Hi honey!! Reading your note was very touching to my heart, wish I were there to hug u.. I can relate w u alot. It's not fare to live such a life. But dear make this time the best time of your life !!!! Mom may be very ill & the time clock is ticking, but who said, it was to stop ticking now make the best of it... Ask questions now about her favorite childhood days, holidays, color and about family history. Once she's gone dear there are no more questions to ask. Play games, do puzzles, write in a journal ea. day w each other and remember the GOOD DAYS!!!!!! Write notes to her about how much u love her ect.. Give her a coupon for a homemade dinner that's her favorite meal, foot soak & polish those nails!! Pamper w lots of tlc!!! You will feel good about yourself when her x is done knowing u gave her very good help and many happy days!!!! P.S remember not to be mad at her for her illness, be mad at the diseases only. I learned that from my sons m.d.& it helped both of us so much it opened a new window for us and life is easier for both of us. My son was always mad at ME for not being able to do the things i was able to do before. Now we take each day as a new day and live it up the best we can. He has grown up so fast because of my fm & rh, bi-polar, but I can still bring the kid out in him just as fast and i feel like a kid too. What a good ole fashion water fight can do for u !!!!!!!!!!!!!!!!!!!!!!!!! Flavored looking mickey mouse pancakes are so fun to do together, and don't forget the disney music to go w the meal!!!!!!!!!!!! My son is 16 & daughter is 5 yrs. me? Well I'll let u guess my age, i just don't let the pain make me feel older then i am.. We will pray for u & your family.. God is always there , so please don't move away from god, hold him close to your heart as u do w your mom!! O.K. Bless you & your family, pedals