Too much to bare

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I am not frantic anymore or fighting to find the answer to all the questions about Lupus. Perhaps the best way to describe my feelings are, "I give up." I'm worn out from fighting with the doctors and waiting on the blood tests. I'm exhausted from trying to explain a condition to people who don't even believe I have the condition. I have no way to move things along when it comes to disability so I'll probably end up living with my parents. I love them but the blend of their family and ours is essentially the ingrediants for the A bomb. For over 20 years I've run my life. If I can't put the brakes on this oncoming disaster, I will be forced to regress to a 15 year old child who must okay every movement and explain every decision. But then, my brain seems to have died sometime about three weeks ago so maybe it won't be such a bad thing.

Family Services is forcing me to see a psychiatrist before considering me for medicaid and I will definitely let this person know that I am truly hanging by my last, fraying nerve. Is my mental health strong -- NO! Would I prefer to stay in bed and sleep 24/7, yes. I have stacks and stacks of medical bills and before long I will be two months behind in my house payments. This is the house I've lived in for 20 years. The house I brought my son to when he was just born. But I can't take care of it anymore. The leaves have taken over and the tree out back may fall in through the roof at any moment. I need to find somewhere smaller that doesn't require upkeep. But I can't pack up the house. I can barely vaccum.

I was back at the doctor's office again yesterday. I just love my pcp. He seems to "get it" when I say how tired I am. I believe I will call the social worker/case worker tomorrow and see if they have any suggestions. I would like to begin calling my congressman but my voice is essentially a thing of the past. I can barely talk anymore and I run out of air when I try. I see my lung doctor on Friday and I have hope that maybe he can make suggestions. He's moving to Kansas City so he won't exactly be invested in my care but maybe he'll have ideas to pass on to the next doctor.

There's something very wrong with my health. I know this without a doubt. I've never felt this weak, or so sore, or so helpless. My father, who I love so very much, wants me to figure this out. Why did it start when it did? What started it? Am I allergic to something (i.e., my cats which I've had since birth). My mom wants me to stop driving and have my dad take me everywhere. Sweet thought, but I can still drive. They know my brain isn't working well anymore and I'm sure it scares them to death. Me too, for that matter.

Depression has settled in very deeply though I fight it with every grain of strength I have left. I will not leave my son to fend for himself if I have I have "go away" for awhile (mental ward). Though it sounds like heaven. The idea of not having to fret over every detail that goes with disability or try to explain to my parents that while my blood work may not show Lupus, the symptoms quite literally override that aspect of the conclusion. It would be a vacation from having to explain myself at every turn. Again, thank goodness for my pcp. He hears the barking cough and sees the swelling from head to toe. He doesn't know if it's Lupus but at least he doesn't pretend to be sure one way or another.

Take care folks and my apologies for the long-winded, sad-song version of my life right now. I have to get it out or I cannot guarantee what would happen next. I do understand why people prefer death over life in these situations. Why do people expect you to explain why you feel the way you do when you have no idea yourself! My father wants to know why this started so suddenly. Because you don't get special notices when your life is about to be turned over on it's head! I've had to literally ask to end a conversation because I simply can no longer breath and while it should be obvious, apparently it's not.

I will leave things at that. Hopefully my next blog will be more cheery. God bless to all.
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  1. 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.

  2. 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.
  3. 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
  4. 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!
  5. 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.