Lately

Lately, I have been feeling rotten, sad, sickly, mad.

Appointment at endocrinologist revealed nothing new.

For those Addisonians that understand these numbers…..

Am cortisol=4.4 

ACTH=15

DHEA=6

All incredibly low…ACTH and DHEA hasn’t been this low in many years.  Only thing I can do is increase DHEA.  I have been taking 12.5 mg, so will up it to 25 daily for a short while, and then every other day 12.5 / 25 mg and see if I can get in the normal range again.  I’m taking 25 mg Cortef daily, can’t increase that.

I had a dental visit last week.  Fillings are falling out every month or so,  I have cracked three teeth…my mouth is a mess.  It is the steroids.  I shudder to think what is happening to my bones.  

Because I had such a terrible time this summer with the heat, my endo wants to try Florinef next summer.  Even though I am secondary and don’t take it and don’t need it, she thinks it might help me with the heat.  We shall see.

I had a “talk” with the endo when I saw her.  I explained to her that my outlook and expectations of my illness have completely changed. 

There is no cure or any of this, I am going to stop looking at her for a cure.  I know very few Addisonian’s’ that feel good all the time.  The few days I get that I can function are few and far between, so I will be thankful for those days, and just accept the bad days. 

Se looked at me and simply said that I might be better off thinking this way.  Wishing and hoping for a spontaneous cure is unrealistic. Short of a miracle, which could happen, I am stuck with this.

I am not giving up, I am just giving in. 

Cheers,

mo

I love this song….it makes me wanna dance.

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20 thoughts on “Lately

  1. I’m sorry you’re in a flare-hole right now. That really stinks. Heat is my enemy too – I don’t know what the mechanism is but boy is it tough. I find myself looking forward to cold weather and getting down when everyone else is happy that it’s unseasonably warm outside of summer. So why the flourinef? I was on it briefly last year to try to bring up my blood pressure – it made me nauseous so my doc discontinued it. I hope you have better luck with it.

    • Sorry it took so long to answer. Florinef is used by Addison Disease patients to help the kidneys hold on to salt for the body. My sodium and potassium can go very low at times….especially in the hot weather. So hopefully next summer we will try it and hope for the best.

  2. Mo, I am so sorry that you are feeling so yucky. You know that we two often feel so much alike. I remember really hoping for a sudden, miraculous healing, then I got the MRI that showed the adrenals had “withered.” It was devastating. However, on the other hand, it kind of helped me move forward and to know that it is what it is. Not fun, but you’ve already been dealing with it…

    Also, I had learned through some research that even Secondary Addison’s disease patients will often end up on Florinef because the entire adrenals are often impacted in the long run. So, it might make you feel a little better to have a smidgeon of Florinef. For me, it doesn’t take much. At one point, they initially put me on a much too high dose of Florinef and my vessels were imploding…too much blood pressure was building and I was becoming Cushing-looking, the vessels in my eyes were bursting, it was just more rotten feelings in the other direction, so there’s a delicate balance. One dose usually lasts me a couple of days in the summer, here in Texas. But, I do drink a lot and take KlorCon and eat my added salt on my food, which helps a lot, but that I don’t like too much.

    Anyway, I sure wish I could tell you that things suddenly get better, but so many people with Addison’s disease do struggle…I’ve only heard from a couple who don’t and they seem to have been diagnosed when they didn’t even realize there was a real problem to start with…kind of weird…I can’t imagine. So, just keep putting one foot in front of the other, on the days you feel like walking about and just be the best you can be with what you’ve got!

    Sending HUGS to you!!!!!!!!!!

    Lana

  3. Ah, Mo, that’s a hard place to reach. I understand, and it’s probably a healthy place to get to. I’m still working on it myself.

    Hang in there, Mo! I’ll be wishing you more good days.

    xoxo

  4. Hi Mo,
    you said…I had a dental visit last week. Fillings are falling out every month or so, I have cracked three teeth…my mouth is a mess….
    I wanted to tell you that last year my dentist (whom is an AWESOME dentist & when his partner,who was my dentist,refused to see me because of being on the steroids & having multiple medical issues, He stepped in. He also took it upon himself to educate himself about Addison’s & Addison’s & dental issues)) & I had made the decision to start removing ALL of my teeth one by one. It got to the point where my teeth could NOT hold onto any fillings (especially the ones that have been done in the past 6 years…was dx in June of 2006)I went to the dentist & he had taken xrays, 3 months later he took another set of xrays & he said I have cavities in EVERY tooth. He had never seen teeth deteriorate so fast. We had a plan, but my teeth have had other ideas as now we’ve been taking them out as parts of them start falling out. I have to stress dose at least 100 mg (have had to go as high as 150mg) use NON epinephrine Novocaine,and take pain meds during & after the procedures. It takes me a good THREE months or so to recover from getting ONE pulled, my body would NOT be able to withstand having them all out at once.
    Weak teeth run in my family. My dad had his all out when he was 17. My son who is now 25 has dentures. He had all his removed over the past year,they were all breaking & falling out before that. so I don’t know how much of mine is because of family crappy teeth line & how much is due to Addison’s & steroid use. Maybe with Addison’s it takes your weakest parts & makes them worse.
    Just wanted you to know your not alone in the rotting out teeth department.
    Have you decided what you are going to do about it? are you having them all removed also?
    I am 45 by the way….with several other severe health issues.
    I too am trying to not give up but working on acceptance. To enjoy what I DO HAVE and not on what I can no longer do. BUT like you my bad days way out number my good ones!!
    FWIW,
    Dannielle

    • Dannielle, Thanks for all the info in your comment. I am lucky to have a dentist that knows alot about Addison’s Her Grandfather has it, so she treats me with kid gloves. Last week when I went to see her, she gave me two temporary crowns and wouldn’t you know one fell off yesteday! I am going in tomorrow for the permanent bridge, and hope I do wel. I haven’t felt good the past few days, and I wonder if it s just the discomfort of the teeth that is making my body want more steroids to deal with it. I am thnking of doubling my cortisol tomorrow to help me get through it. I’ll just go with the flow for now with the rest of the teeth and make a decision later. Hopefully after these are fixed I will get a break for awhile with the tooth fairy.
      mo

  5. Hang in there Mo! I do have days when I feel bad, but overall I’m ok most of the time. Don’t stop fighting to feel well. I know we’re different since I’m primary, but I have hope that you’re going to keep finding ways to make life feel more positive. I do think that accepting what we’re dealing with can help adjust to our reality, and I know that I sure mourned over being diagnosed with Addison’s. So if you haven’t completely gone through that, maybe this is it?

    • Suzanna, I hope you are right. I’m hoping that the cooler weather will help me feel better and function a little more. I really need to get out of this funk.
      mo

  6. sorry that you’ve not had much in the way of good news or feeling good lately. As Judith says, acceptance isn’t giving in to your chronic illness. I realize that acceptance can be a tough thing to do; but it doesn’t mean giving up. good luck!

    • I do not intend on giving up on me. I am just givng into what my body wants, if it wants sleep…I will sleep. Today was a bad day, so I just laid low and did only what I could handle. Tomorrow could be a great day, that’s what I look forward to…a good day. Thanks for you reply.

  7. Oh Maureen,
    I cannot begin to comprehend what you have been going through. You are an incredible woman to manage to stay as positive as you do given the circumstances of your life.

    There is a HUGE difference between giving up and giving in. I know that when I finally gave in to the reality of my more benign condition of fibromyalgia it brought down my stress levels and I actually did better. I’ve not come to that place yet with my heart conditions – I still feel the fear, the hope, the disappointment and despair.
    with much love,
    Judy

    • Judy, I have been absent with both posts and comments as of late…but I have been reading your blogs. You can find humor to help you deal with your illness, a talent I wish I had. I hope you are right…that not worrying and stressing out so much about my Addison’s, that I might do better. Stress is what fuels the Addison monsters…them s.o.b.’s.

      Your heart condition is something you make light of sometimes (in your blog at least), but I know just how scary your everday life is. It’s like walking on eggshells I imagine. I’m glad Tallulah has been taking good care of you….and Max too of course!

      Thanks for the pep talk! I needed it!

      mo

  8. Mo, I think it is best to accept what we can not change…I try not to think about what I’ve lost. I never feel well. But there are those worse off than I and I am grateful for the measure of health I do enjoy. I hope you can feel better about everything you are going through. You have a lot to deal with so don’t be too hard on yourself if sometimes you aren’t as accepting as you’d like.

    It might be a good thing to try the fludrocortisone. But with your low potassium it might prove trickier than for those with primary Addison’s…but it might help. Worth trying.

    Take care,
    Jo

    • Jo, Thanks for your reply. What is that saying….If life gives you lemons, make lemonade? That sounds great, if I could put vodka in it. I know we can’t change any part of this disease, I just need to stop being so mad about it all the time. We have talked about it so I know you and I have the same sort of daily misery. Embrace the good days…right?!?

      Lova ya,
      mo

  9. I’m so sorry that you didn’t get good news. I have been feeling worse the past couple of weeks myself. I think part of keeping your head in the right place with a chronic illness is finding the right balance between being realistic and accepting the stuff you cannot change while still fighting and keeping hope for better days.

    I am glad that you made a post, it had been awhile and I was wondering about ya. 😉
    Thanks for sharing the video. I had heard that song on the radio, but I’d never seen the video. I like upbeat songs.

    Hang in there Mo. I will keep you in my prayers.
    (((hugs)))
    Deb

    • Thanks Deb, My head hasn’t been in that good place for several weeks and I just didn’t have anything good to say…that explains the lack of posting on my part. Even though I am so pissed and down in the dumps right now, I think my attitude adjustment might be just what I need. There are so many things in life you can’t control…..why should I think I can control this stupid illness. Your posts and pictures are so enjoyable, and I am constantly amazed at your upbeat personality. Your health problems would stop some people fromm doing anything, and you just keep going. You are a WONDERFUL Mother, and work very hard to keep your family happy. You, my dear are an inspiration!
      xoxomo
      Glad you liked that silly video…..

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