Blog Comments

  1. serand4's Avatar
    Hi Shining Star! It's funny that I got your message today because it's the first good day I've had probably since that post. I am magnet for colds and sinus infections so they hit one after another and I just got over my last one. I finally got the oil changed in the car (LONG overdue) and stocked up our groceries. My poor son was down to popcorn and water for snacks which is death to a teenager! It's heaven to have a good day!

    Surprisingly, the fibro is so much more difficult to deal with than the Lupus. The Lupus can kill me but the fibro has made me want to kill myself a few times. I have it really, really bad. I even went to Clevenland Clinic last year to make sure I didn't have some form of cancer that hadn't been caught by the local doctors. Apparently I have it in every aspect of my system so even my gastro system is screwed. Before I started prednisone I could stomach little more than cereal and soy milk. Keeping my weight down wasn't too much of a problem since most foods were more trouble than they were worth. But I also have digenerent (sp?) disk disease and at the bottom of my spine there is a tear in the stuff inside my spinal cord and a nerve is caught in it. So, it's tough to know what is the back and what is the fibro. I'll just say a little prayer for you that you don't have to deal with this nasty little bugger! Lupus sucks and it would be nice to not have to fight all the lung problems I have with it, but I'll take it over fibro any day!

    Hope all is well with you! Thanks for thinking of me, it means a lot.
  2. Shining Star's Avatar
    Hello! How is the fibro going? It sounds a little easier... thinking of you x
  3. serand4's Avatar
    Thanks so much for both of your support! Man, that was a hard and horrible day! I did end up in the ER because I felt like I'd been kicked right in the middle of my chest. Truth be told, I was just so tired I wanted to be admitted and taken care of but instead I got some intense pain medicine, a little sleep and some perspective. My parents kept my son for the following day but I did go get him that night. For the first time in my whole life, my mom knew enough not to give her "two cents" on my parenting. I was already getting sick (I am SO sick right now with a chest cold) and I wasn't going to back down about his behavior. He and I are walking on egg shells but when I'm sick like this, I can't talk anyway and can barely breath so there won't be much arguing.

    And Rob, I wish you lived next door too! A snow blower would be one hec of a welcome addition to the neighborhood! I'll just have to figure out a different way to handle these type of things. As you guys know so well, being sick just puts such a different spin on everything and I remain convinced that my doctors have missed something. The Shrinking Lung Syndrom was an original diagnosis that suddenly vaporized when my ANA score went down. The problem is, if I do have that, it needs to be treated now -- yesterday actually! Anyway, thanks for your kind words and I will work on my perspective. God bless and I hope you guys have sunshine where you're at!
  4. BonusMom's Avatar
    What a nightmare for you to endure! Raising teenagers is difficult enough, but special needs kids are even that much more of a challenge. I'm sorry you're having to do this without the support of your family or your son's father.
  5. Linda From Australia's Avatar
    OK, so that wasn't a very postive comment was it? Sorry about that, but I just wanted you to know that I know exactly how you feel.
  6. Linda From Australia's Avatar
    Susan I know exaclty what living with an autistic teenager is like.

    We went on a holiday 2 and a half hours away from home one time. My autistic teenage daughter sulked all the way home, I can't remember why, but it was only a little thing. When we got home she got worse. I had enough, was sick and said "FINE, I will drive you all the way back and continue with the holiday". Sometimes, we give in because we cannot handle the abuse and tension an autistic person can create over tiny little things. I was 5 minutes away from our destination when she realised how stupid she was, and then I had to put up with all the over the top sobbing and howling the whole 2 and a half hours back home. And it coninued into the night. When she realised how innapropriately she acted, she was devistated.

    I was at the shops at the time, the very rare times I finally had time on my own. My younger daughter phone up and all I could hear was howling in the background. I said "What did you do to your sister?" Apparently my autistic daughter found a wild mouse in the house and decided to keep it as a pet. (YUK) She kept it in her pocket stroking it from time to time. She forgot about it and when she went to stroke it, it was dead. So of course she thought she killed it. For an animal lover, that is the worst thing that could happen. She was out the front of the house howling and sobbing, so loud. My other daughter took the phone out to her and I said, trying to make sure the other shoppers couldn't hear me "for goodness sake, what would the neighbours think. It was only an old sick mouse, you are acting as though someone close to you died. She wouldn't stop howling, at the TOP OF HER VOICE!!!! I told her to get inside and shut herself in a room in the middle of the house" (so no one would call the police thinking that something really bad was happening). And by the way, I had some lovely clothes I wanted to buy myself, they fitted really nice and made me feel so good. I just dumped them on the nearest shelf and took off as fast as I could to go home to sort out my daughter, which took weeks!!

    Another time, I HAD ENOUGH of her selfish and insensitive behaviour (no fault of her own, just being typically autistic). I said I am driving her to hospital for teenagers with mental health problems and dumping her there because I couldn't handle her behaviour anymore. She said "GOOD". So again, after driving 45 minutes, when she saw the hospital she realised that I was serious, I was going to dump her there. Then the howling and sobbing started again when she realised I would not be staying with her. She threatened that she will run away from hospital every chance she could get and bite and kick the nurses until they let her come home to me. Stupid me drove home with her, and her behaviour didn't change.

    Another time I phoned an emergency phone line on weekend and told them I couldn't handle my daughter's behaviours and wanted emergency respite. They said there was no room. When i told them that I felt like harming her and that I if I started I probably wouldn't stop. I was worried for her life. All they could offer me was someone to come into my house and watch her. I told them that was not good enough because I didn't want her here with me, I wanted her out of my house. But no - they didn't even worry about th threats I made. I have a feeling that they think mothers of autistic children are angels and would never harm their beautiful helpless autistic children. I never got any help, they just told me to phone her psychiatrist on Monday.

    I also have 2 other teenagers, and there is a HUGE difference between 'normal' teenagers and teenagers who have autism. She is 23 years old now, and OH BOY - being autistic, just makes the teenage years stretch out to an eternity. We have had 10 years of teenager behaviour with her (13 - 23) and she is behaving at a 14 year old at the moment, so you do the maths, how many more teenage nightmare years am I in for??

    To some it up - having a teenage autistic child really SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    And being sick at the same time - really ______ _______ (oh I don't sware, so you fill in the blanks) !!!!!!!!!!!!!!!!!
    Updated 01-21-2011 at 11:18 PM by Linda From Australia
  7. rob's Avatar
    I guess I spoke too soon-I'm sorry you have had a totally f-ed up day. I wish I lived nextdoor to you, I'd come over with my snowblower and take care of that driveway for you. For what it's worth, I think you were right to stand up for yourself, and your authority as a Mom, and the head of the household. I'm glad you got some help from the police-I know you didn't call them to be mean. Teenagers, Autistic or not, sometimes need a wakeup call like that. Let them know that threats and disrespect will not be tolerated under your roof.

    I know the stress is tearing you up. Just know that I'm thinking of you. If you want to talk, you can always PM me.

  8. rob's Avatar
    I don't know what normal is anymore. Sometimes, I don't think I know who I am anymore. I look in the mirror and see a stranger looking back at me. A tired old recluse who's rapidly losing what marbles he still has left upstairs. Sorry, I'm not trying to be a bummer.

    However, it makes me very happy to see that you are doing well, and feeling so good. Soak in every last drop of the good days, and hold onto it tight. It's the medicine we need to help us get through the bad days.

  9. serand4's Avatar
    I'll bring that suggestion to my doctor on Thursday, Shining Star. There has got to be a better way to manage this pain without destroying my body. Wow, that's interesting that another woman, shining star and I all were diagnosed with an autoimmune illness four years after being diagnosed with fibro. There has to be a real connection to those two. Today I spent the day with my son running errands and even though I took a perocet half way through, my whole body was screaming in pain by the time we got home. I just don't understand why there are no long-term pain medicines for an illness like this. When I see my doctor, we are going to have a heart to heart. I don't mean I'm going to yell or anything, I just have to get her to understand that I truly am not trying to get high. I don't drink or smoke. If I wanted to get buzzed, I could -- it's not my thing. I just want to have some quality of life sometime in the near future. Oh, and the prednisone only made me hyper for about three weeks. I would kill to have something give me energy! I did find the 5-hour energy drink and while it's horribly expensive, it works for me but I have to save it for special occasions due to the cost.

    Anyway, I will definitely bring up the dihydrocodeine. I also am getting trigger shots so they should help. Thanks for the support guys. I truly don't know where I'd be without this group of people. Unless you're going through it, you don't understand it and don't believe it. If I hear my mother say, "now Susan!" when I say how bad the pain is or my dad dismiss the whole concept of pain management, I will definitely scream!

    Take care and have a great night!
  10. Shining Star's Avatar
    Hey Serena, no none of it is imagined. It is all very real. The bone crunching, mind numbing pain is a result of very vulnerable nerves. There are so many invisible nerve centres all over the body and fibro seems to plug into them like a generator. Not being able to sleep as a result of pain and steroid hyperactivity makes us further vulnerable to Fibro.
    I was diagnosed with Fibro in 2001 after four years of SLE, and put on a codeine based painkiller, called dihydrocodeine. It's strong but along with sleeping tablets, I managed to break the cycle of excrutiating pain. So that would be my solution to you - strong painkillers plus sleeping tablets for an intense period of time, until your cycles of pain start to break and your mind starts to relax enough to breathe again.
    What do you think? Good luck. x
  11. tgal's Avatar
    Hey Serena,

    I understand the love/hate relationship with steroids. I actually wrote to someone about that today. I know that steroids are not good for us but it is one of the things that makes me feel better too. I really do understand what you are going through and I hope things get better for you soon. Until then please remember that we are here for you
  12. serand4's Avatar
    Thank you! Your comment means a lot to me. My degree is in Journalism and in all honesty, I haven't used it much since college. I'm half way hoping that this upheaval in my life may be what leads me back to something I loved doing most of my young life - writing. If I could have two decent days in a row, maybe it's a possibility!

    Thank you again!
  13. Linda From Australia's Avatar
    I am pleased that you have been able to do a few 'normal' things. But remember, that with successes, you will also have failures. Don't look at the things that you find difficult as failures though, just remember that some days you will be able to do somethings productive.

    At times you may be just taking one hour at a time, and as things get better, take things half a day at a time. Eventually you can take things a day at a time, a few days at a time, a week at a time. I hope you understand what I mean.
  14. serand4's Avatar
    Thanks tgal! That was one hec of a crash over the past few days. I have a map laid out for next week to be more proactive and try to get to the bottom of some of this. It's the not knowing that just drives us sane women crazy! And, of course, the congnative dysfunction totally knocked me for a loop! Wow, who knew this stuff could start so early!

    Take good care and have a safe and happy New Year. I just know this will be a better year! Love ya, too!
  15. tgal's Avatar
    So glad you are feeling better! I know the pred has its side effects and can be nasty but I agree about quality of life. Don't make yourself suffer when you don't have to. We love ya too much!
  16. predcheeks's Avatar
    i think almost anyone with an autoimmune disease has been there..hopefully you'll get your meds figured out soon. i have no idea what kind of meds you are on but when i started feeling really depressed like that..the dr put me on a vitamen d supplement. it has been working really well. can't hurt to ask if you aren't already on it. praying for you.
  17. SandyR's Avatar
    it's not easy admitting these feelings when they come along and God Bless you for being so open and honest about how you do feel. Your love for your son pours through your words and out of my computer screen. Good for you for not only recognizing how you feel but verbalizing it and seeking support for it as well. It's a tough road we are traveling on and please know - you are not alone. I'm praying for you.
  18. SandyR's Avatar
    my pulmonologist is also my harshest critic. I have Sarcoidosis. A condition he confirmed the diagnosis of and still he acts like I am making things up. I only have to see him a few times a year and when I do there is obvious disease action so I wish he would stop doubting his own diagnosis aloud and just move onto treating me for it already.
  19. SandyR's Avatar
    I've been praising your writing style in my head as I read through your blog and now I understand why you are so good at it - you love it. Maybe this blog could become some sort of stay at home job for you. Lots of places hire freelance and medical blogs seem to be really big right now.
  20. SandyR's Avatar
    I think crying's good. It cleans the windows of our souls so we can see the sun again.
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