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The year of hell that started 10 years ago

Discussion in 'Life Changing or Long Term Physical Illness' started by PhoenixLady, Nov 28, 2017.

  1. PhoenixLady

    PhoenixLady Well-Known Member

    About 10 years ago I was diagnosed with lupus and another immune disorder that I don't talk about much because it is rare and misunderstood and fibromyalgia.

    That was after six years and three rheumatologists. The fourth one was a charm. The others were actually quite cruel and judgmental and there was many a time that I ended up crying in the doctors office.

    Many times I was told it was all in my head. It was the depression and ptsd that I have dealt with since I was a child. Getting that diagnosis was a double edge sword.

    On one spectrum it was an affirmation that I wasn't just depressed there was something physically wrong with me. It is extremely hard to diagnose lupus because it mimics so many immune disorders. You get a blood test and if that is positive they give you another test to confirm that first test and then if that second test is positive they give you a third test to confirm that second test.

    So bottom line I have it, and according to my doctor I am lucky because of my race/ethnicity so it won't be as severe. But with all three disorders there is no cure only management.

    Then of course no one can actively see the depression and ptsd.

    Now throw the problems with organs because that's what lupus does it attacks your body basically.

    Now problems with osteoporosis because of repeated use of steroids to help control the immune disorders. And of course I am supposed to limit steroids now because of that. How am I supposed to manage the constant pain and exhaustion?

    This year alone I have had approximately 55 doctors visits and that doesn't even count the eye doctor and dentist.

    The year isn't over the endocrinologist wants me to get a yearly calcium infusion but they need to talk to my dentist first which is going to be a problem because I have had repeated infection so I might not be able to get the infusion because jaw infections can be a side effect. The only other option is to give myself shots and I can tell you right now that won't happen.

    I probably need to make another appointment with my doctor because my pain levels have been off the charts. I know logically I need something better to manage the pain than what I have right now.

    I am just really tired of going to appointments having to take time off work.

    The invisible diseases that no one can see so I must be all right...right?
    Last edited: Nov 28, 2017
  2. sassy123

    sassy123 SF hugger Staff Member Safety & Support SF Supporter

    Hugs so sorry you have to go through all of this. You are such an active person I know all of this has to be extra hard because of that. We are all here for hugs stay safe
  3. PhoenixLady

    PhoenixLady Well-Known Member

    Sassy thank you for your words of support
    Honestly right now I don't really care about being active
    I got to thinking about it more and with all the therapy and Eye doctor and dentist appointments I have had 92 appointments this year so far
    I had to contact my regular doctor today to talk to her about my pain management I have to go back into see her on December 11 really don't want to talk to her

    I'm fed up to be honest
    I feel like giving up
    Why fight it all if it can't be cured
  4. sassy123

    sassy123 SF hugger Staff Member Safety & Support SF Supporter

    Hugs no giving up you have a trip you need to go on next year there is always hope that things will get better don't lose that. There might not be a cure but they could manage your pain better. You can still live a long good live don't give up hope
  5. Deety

    Deety SF Supporter

    Oh my, that is rough, sorry you have so much to deal with. Constant physical pain is exhausting, and on top of that you have all the appointments you need to go to to try and manage your conditions. You sound very discouraged, but please keep trying, maybe a cure is not available yet, but I hope you will find the right combination of medications/therapy that will control your pain and other symptoms.
    Hugs to you.
  6. JmpMster

    JmpMster Have a question? Message Me Staff Member Forum Owner ADMIN

    Chronic pain is completely exhausting. When is the sort of thing others cannot see then it is not only physically exhausting but also emotionally draining to have to either explain or not explain and leave hanging why no, I am not going to go to ... or do .... . Pain management can be hit or miss as you well know as first need to find a doctor that even believes you- - - - I am just saying I completely understand your difficulties and empathize.

    I don't have any advice really- 10 years seems likely you have thought of everything I could think of in next 10 minutes- just waned you to know yes, some people do understand., and others are living the same way. It is hard- but but look for the good days- if no good days then the days that are not as bad. It is easy to let yourself stop seeing the good- but it is still there around you- just that like everything else you have to work harder to see it or enjoy it.
  7. SillyOldBear

    SillyOldBear Teddy Bear Fanatic Staff Alumni

    Oh how I ache for your @PhoenixLady. I knew you were suffering, but did not know how much. I have some sense of what you are going through as I also have painful illnesses that are not visible to others. They just think I am a BIG GRUMP. Have even gotten in trouble at work for it lately. The sad thing is people just will not really be able to understand unless they are confronted with the same or similar issues. While there are times that I do wish that on my WORST ENEMIES, fortunately I am not really sincere in that. I just wish they would understand. I suspect you wish the same.

    How you handle all the pain, doctor appointments, the expense (good gawd-I hope you get help with that). Then there are all the side effects to the meds. Like pain meds can cause constipation. And you know all to well about the osteoporosis. My mother dealt with that. And an elderly at my church suffered much from it.

    Pho, you have certainly earned my respect and admiration. Only you can determine when it is time to give up the fight. I can only say that you need to be absolutely sure before you do. Sending massive amounts of hugs your way.
  8. PhoenixLady

    PhoenixLady Well-Known Member

    Your completely right chronic pain is exhausting. I wish no one had to deal with it. Usually I can get things into perspective but this year has left me gasping.

    It's been one thing after the next and I just can't seem to catch my breath. I think I am afraid I am never going to get control of things again.

    Dealing with a chronic illness is like the tiny snowball that begins to roll down the hill and with each turn each roll it gets larger and larger until it seems to swallow the person whole that is trying to get away from it.

    Hearing you understand and empathize does help, it's just so hard when you feel like no one gets it. Thank you for your words of support.
  9. PhoenixLady

    PhoenixLady Well-Known Member

    I won't give up, as much as I want to when I am at my wits and or at least I am trying really hard not too.
  10. PhoenixLady

    PhoenixLady Well-Known Member

    Deety I am really discouraged and I appreciate your words of support immensely. I will keep trying, that's all we can do right?
    Deety likes this.
  11. PhoenixLady

    PhoenixLady Well-Known Member

    Bear I definitely do not think you are a big grump but I get what your saying. People don't often look below the surface and really get to know the person anymore. Even people close to us seems a difficult thing to grasp.

    I wish you not I or anyone else ever had to deal with chronic pain.

    Your words of support mean so much to me it is what sustains me to know that I am not alone that yes there may be difficult days but it also reminds me to look for the good.

    I think sometimes because of what have and am going through can be useful because since I know and understand I can possibly comfort and empathize with others.
    Big massive hugs headed back yor way
  12. @PhoenixLady I have had some time this morning to get in here and read posts. I'm sorry I didn't see this before.

    I knew you had pain in addition to the whole PTSD from childhood but I didn't know how bad. From when I first met you here, I have admired how thoughtful and creative and well spoken you are. And to know how you push that through all you are dealing with makes you even more amazing! You are truly a fighter and I believe life is more to you than you sometimes admit. I'm sorry it is so hard for you. Your recent bout with the injury and being off work and fighting to get help with your responsibilities show your real inner strength.

    I just want you to know that I truly respect and admire you! You honestly inspire me to tend to my own issues rather than just giving up. You and @sassy123 have really been instrumental in keeping me alive and moving forward and for that I am eternally grateful.

    Please know that I am always here for you and now that I'm not all that far away, if there is anything you need, please don't hesitate to ask because as a friend and because I owe you for all you mean to me!

    I care. Hugs.