Blog Comments

  1. SandyR's Avatar
    I had a Big Sister as a kid! We're still very close 22 years later.
  2. SandyR's Avatar
    This post sounds like something I would have said word for word. Except for the son bit, but substitue friend and I'm right there with you. I used to volunteer at a local dog shelter once a week or more and had to give that up this year b/c the air there was killing my already compromised lungs and I was getting at least one sinus infection every month. It was the worst part of this year for me but I knew it wouldn't be fair to volunteer there and only be able to do 1/2 the work of the other volunteers. I really miss my puppies but since I stopped going there in April I have only had 2 sinus infections the rest of the year so I am learning to live with this choice. You are so right in describing the feeling of watching those furbabies leave for their new homes with their new mommies and daddies.
  3. Linda From Australia's Avatar
    Let us know how you went.
  4. serand4's Avatar
    I think I will call my pcp first thing tomorrow and see if I can get on Lexapro right away. This fatigue has got to be due to depression. If it's not, than I'm truly sicker than I think. I am definitely confused as to my diagnosis but I'm slowly taking that one day at a time. We'll figure it all out. In the meantime, I've got to find a way to get more energy so I can take care of the numerous bills and disability claims that need to be handled right away. If the antidepressents don't work, well, it will be time to try something else. Like one doctor said, it's just a process of elimination.

    Thank you for your support! I really do appreciate it. I'm just at a low point and we all know how hard it is to crawl out of those sometimes.
  5. predcheeks's Avatar
    thank you for sharing that! it made me feel much less alone in the morning agony of trying to get up but feeling completely exhausted! i just got a new coffee maker for christmas to keep in my room..so hopefully the caffiene will help a little before facing the family! one day at a time..things will seem better again before you know it!
  6. Linda From Australia's Avatar
    Well good on you for blogging your thoughts. Hopefully you feel a bit better for writing it, because no-one close to you really wants to hear the same old story of feeling sick and tired. You are right, your son probably does know that you are laughing just to please him. I suppose your doctors are concerned about your mental health and that is why it was suggested to see someone to help you cope. But with the mountain for medical bills, it is hard to work out what appointments are a priority. I don't have any answers for you, but you have my ears. I am glad you had a nice Christmas, hopefully next year will be an easier Christmas for you
  7. vfelus's Avatar
    Thats great!! I too am going on a week of feeling better! I have noticed though I still have to pace myself. I try to do too much because I am feeling good. Today have plans to take my Mom to a concert so instead of getting everything done before I go, I am taking it easy, paying some bills and going to take a little nap. That way I will feel ok for this afternoon. I hope you continue to feel better!
  8. Linda From Australia's Avatar
    How are you feeling today. YOu were hoping things get better. Perhaps if you write in your blogs how you actually get through the difficult times which will give you the courage to continue when you have another bad time.
  9. Linda From Australia's Avatar
    This is wonderful news, Enjoy your Christmas and pace yourself so you do not get sick
  10. serand4's Avatar
    Reference to later posts on loss of memory -- I have NO recollection of writing this. I used to tease about wanting to have dementia before I died so that I wouldn't realize what I was losing. Wow, I'm not so sure I want that wish now!
  11. serand4's Avatar
    Hi MammaD - I think autoimmune diseases just pile up like my kid's laundry! Fibro really does suck but I'm not sure it's as bad as Lupus. Lupus seems to just drain every last bit of energy a person has and for me, whatever it is that I have, seems to bring on one illness after another. I was SO sick last week! I knew I had to go to the lung doctor because around this area there must be two because it's up to a three month wait for an appointment despite feeling like death. The second I walked out of the house I felt like my eyes were on fire and in less than five minutes I had a malar rash that was practically purple. Yeah, doctor, tell me nothing is wrong! (Sorry, still mad at the one rheum doctor). It was the first time my folks had seen the rash (they met me at the doctor). They also saw how swollen I was and had the lung doctor reititerate the fact that ANA scores do not necessarily show up with autoimmune diseases. Please don't think I'm slamming my folks. They just want me well and it's easier to believe I'm wrong than to listen to massive amount research I've done.

    But I am better now. I made an honest to goodness lunch for my son (first time in days though at 16, he can make sure he doesn't starve). I'll be able to do some laundry and God willing, by tomorrow I will feel much closer to a decent version of normal. I need normal to last for at least a few days to get to Family Services, get the blood tests and maybe even pick up a couple of things for Christmas. I know to do only one or two things each day but boy could I use a mega burst of energy right now!

    Take good care!
  12. mommaD's Avatar
    I think alot of us have the same feeling. Only we couldn't. I'm tired of all the pain, Drs. included. What else can they do? Not much.they pretend to know how we feel. I wish! I now have FM! kill joy. Then there's Crest symdrome! What's next? I feel your pain. I'm here if you need to vent! Nice talking to you! Momma D
  13. serand4's Avatar
    Rob, thank you so much! You essentially told my story though I haven't tried to kill myself --- but the Lord knows how many times I've wanted to. The fatigue is SO overwhelming! I hate to answer the phone anymore because it most likely will be my mother telling me something I need to do. Yes, I need to do blood tests desperately and I need to make more doctors appointments. I'm begging the Lord for strength to shop for Christmas. My son lives for this time of year and while he sounds very self-centered, he LOVES getting the stuff. We also promised to help my folks put up their tree. I can't believe I actually had more energy at Thanksgiving when I agreed to do that. But somehow I will. I've heard people say "just push through it." How? How do they do it? I see a psych next week and I intend to be absolutely candid about how I've been feeling. Perhaps there's an antipsychotic that increases energy. Caffine is a joke so maybe there's something more.

    Again, thank you Rob. There are some of my fellow lupusites that are living a parallel life.
  14. rob's Avatar
    Sometimes, life just plain sucks. There's no way around it. What a twisted thing it is to be in diagnostic limbo. And how strange is it that I feel so fortunate to have a diagnosis for my problems. Have you ever thought of asking your PCP if he/she would start you on Plaquenil to see what happens? I know it sounds backwards, but one sure-fire way to come closer to proving you have an autoimmune disorder is to take one of the better meds used to treat them and see if you start to feel better. It's an idea anyway. My parent's help me out quite a bit. I'm 42 and they are both 73, I should be the one helping them. But, they are in good health, and I think they like to help just because. I could never live with them though. I know what you mean about the makings of an A-bomb. There are no people in my family who are passive, and sometimes strong personalities can clash (that's putting it mildly).

    I can really understand your feeling that you are giving up, or that you would like to. You know, you can surrender for a day to rest your mind and recharge your batteries, but not give up totally. Sometimes, we just need a break from the Dr.'s and all the questions of why, and how. When I was first diagnosed with SLE, I was driven to a very bad place. I was absolutely overwhelmed with pain and loss. In the matter of a few months, I lost everything I worked so har for for so many years. My business, really my dream job, had to be sold. My fiancee and soon to be wife left me after six years together. Said she needed someone in her life "who wouldn't be dead in a couple of years". She actually said that. My friends stopped coming around and my family and I were not on speaking terms at the time. One day I finally gave up and took a massive overdose of tranquilizers and proceeded to drive head on into the path of an oncoming truck, "just to be sure".

    Long story short, I was nearly dead when I woke up in the hospital over a week later, but I survived (much to my dismay at the time). I recovered both physically and mentally. I sold everything I had and moved to my childhood home of Maine to mend fences with my family, and to get away from the pain and bad memories of my dream that died back in Arizona. Today, I have Lupus, and I was also diagnosed with MS two years ago. The two worst autoimmune disorders there are, and I have them both! But, I do OK and enjoy life to the best of my abilities. I met a new lady who is just an amazing person, and my family and I are very close now. I cannot work, and am on full disability. I live a pretty good life overall, although I do have some very tough days, like lately, I've been dealing with the pain of Trigeminal Neuralgia, which is related to my MS.

    I guess what I'm trying to say, is that no matter how bad things can be at various times in our lives, we can get through them, and still have good days ahead of us to look forward to. It is not easy, I know. I went from near death to living on the coast of Maine with new friends, new family ties, new hobbies and interests that I can handle, I have an awesome girlfriend, and I have three loving cats. Things can get better! If you want to talk, you can PM me anytime. Just know that I do understand how you are feeling. I hope you have a better day today.

    Rob
  15. Linda From Australia's Avatar
    It is great that you had a good day, hopefuly there will be many more.
  16. Linda From Australia's Avatar
    I know this blog is a couple of weeks old now, but what is happening with your lungs? Was the doctor's appointment positive?
  17. slim's Avatar
    Quote Originally Posted by Linda From Australia
    WOW what a fantastic day. I am glad you and your son enjoyed yourself.
    hey linda
    im glad u had a good day with ur son even if it made u ill because for us we have to grab those moments . I dont have lung problems but i did notice like u that my blood pressure has been higher than normal im usually low and my heart rate will be 131 while doing nothing but sitting down im suppose to go back to the cardiologist but im tired of all the doctors appt. hope u feel better ill keep u in my prayers. slim.
  18. Linda From Australia's Avatar
    WOW what a fantastic day. I am glad you and your son enjoyed yourself.
  19. sillylupie's Avatar
    Hello serand4,

    Hugs & Prayers going your way.
    Please feel better soon.
    I am glad you went to the hospital and not wait!

    Love, Bin
    http://sillylupie.blogspot.com/
  20. Atkyjason's Avatar
    Hello,
    I'm sorry to hear you're going through so much all at once. I've never dealt with Lupus or Fibro myself though my grandfather does live with Lupus.
    I believe I may have a resource that can help you with applying for Disability. If you go to www.disabilitycenter.info you can sign up for a free membership to the Disability Digest. You can get really useful information about applying for Social Security and how to work without loosing your benefits. I am on SSDI myself because I'm totally blind and unemployed. I used this service to help me so maybe this can help you as well. I hope so at least.
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