You’ve Got What?

 

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This is a repost from a closed blog.

 

Starting in 1985, I had one medical problem after another.  Two babies, an ectopic pregnancy, a miscarriage, 9 surgeries for gallbladder, cysts, hysterectomy and a bowel resection…but nothing could have prepared me for what happened to me in 2001.

 

I was so sick I couldn’t get out of bed.  I was exhausted, weak, I couldn’t eat, I was confused all the time, and all I did was sleep.   I had debilitating fatigue, muscle weakness, cramping,  low potassium, and nausea.  The doctors kept attributing all my problems to my Crohns.  But I knew it was something else.

 

After several ER visits due to extreme weakness, I was finally admitted to the hospital by my Gastroenterologist.   You know those doctors that tell you they ran every test in the book and didn’t find anything?  Well this guy DID run EVERY test in the book, and he solved the big mystery

 

ADDISON”S DISEASE

 I had never heard of it.  Adrenal insufficiency?  What does that mean?  Where are your adrenal glands and what the heck do they do?  What does the pituitary gland have to do with all of this?  What is cortisol? ACTH? DHEA?

 

And the biggest question “why didn’t someone figure out sooner what the hell was wrong with me?”

 

Addison’s Disease is failure of the adrenal glands. Lifelong treatment with steroids is necessary. Until the development of steroids Hydrocortisone, Prednisone and Solu-medrol, adrenal disease was ultimately fatal.

 

 I saw my Sister’s  endocrinologist, I went to the University of Chicago Hospital, and I took a trip to Mayo Clinic in Minnesota.  None of these doctors could make me well.  I was told to take my meds and I should feel better.  How many of us have heard that line?  It’s bullshit! 

 

 Because my endocrine system is shot ( pituitary, adrenals, thyroid and ovaries) I am a hot mess. 

The most important hormone the adrenals release is cortisol. Cortisol is the “flight or fight” hormone, it helps you handle stress.  Major stress, such as injury or illness, dehydration, low potassium levels, vomiting, fever or an infection can throw you into an Addisonian crisis, which requires immediate medical attention. 

 I have had many trips to the ER in an ambulance and too many hospital stays to remember.  When a person goes in crisis, IV steroids must to given to keep the patient from going into shock. This can all happen very fast. I keep a supply of steroid injections on hand so if needed, I can give myself a shot before I head to the hospital.  Because I take steroids everyday, infection or illness can be easily masked.  Just as people take steroids to help with inflammation from allergies, asthma or rashes, my steroids can hide a problem until you are very sick or in pain.  In 2005 I had a severe diverticulitis attack without even knowing what was going on.  The steroids kept the inflammation at bay and the infection hidden so I didn’t have pain. One morning I woke up in terrible pain and I ended up in the ER.  An MRI showed a mass in my colon and I needed emergency surgery to remove and repair the damage. 

 

There are so many side effects for a person on daily steroid therapy.  It damages bones, the lining of the stomach, weakens your immune system, can cause cataracts, depression and insomnia.  Even GOOD stress can land me in the ER. 

 

   It doesn’t have to be something bad to affect your stress level, and with no cortisol, an Addisonian is in big trouble. Many times my family noticed I was in trouble and got me to the ER. Confusion is one of the first symptoms for me, and then I just get stupid.  I don’t even realize what’s happening to me. 

I have to wear a medic alert bracelet, and I keep a list of all my meds in my wallet, as does each of my family members.  

 

Addison’s is my major illness.  I rarely think about the others: Crohns, Seizure Disorder, Hypopituitary, Hypothyroid, Endomeitriosis, Hypertension and Fibromyalgia.  (I think that’s it).  All of my siblings have some type of auto immune problems.  Spread among us is Hashimoto’s, Raynaud’s, thrombocytopenia, Endometriosis, and pernicious anemia.

 

  I do not suffer with daily pain as so many of my “blog friends” do, and I am thankful for that.  But, my life has been forever altered by this disease.  Days, weeks, months and years have been robbed from me because of my inability to function.  From one day to the next I never know how I am going to feel.  Sadly, I have more bad days than good.  My family has been there for me always, and for that I am thankful.  Addison’s Disease has attempted to take my life….but it hasn’t!  I fight this S.O.B. everyday…and I fight like a GIRL

 

16 responses

  1. Oh, this is so depressing. I know you all are telling the truth. Auto Immune diseases suck!!! I have Hashimotos, which I was able to live with, then I was diagnosed with Pernicious Anemia, which as long as my D & B12 levels are good, I could handle that. But now I have primary Adrenal Insufficiency (which last antibody test was neg so not considered Auto Immune) and so far I am not handling this very well. And I don’t understand why starting the medicine has made me feel worse. I feel like I have the full blown symptoms now of Adrenal Insufficiency, when I didn’t before. I was better off not being treated for it. I want to go back there. I know it would be a dangerous situation prob if I ever was in an accident or something. I also have asthma & allergies.

    So have any of you ever consulted a Naturopathic, Holistic, or Functional Medicine type Dr? I am wondering if that would help. I am trying to be Gluten Free. Have any of you tried that? Supposedly if you have Auto Immune Diseases you feel better to go Gluten Free. And they say that could be the cause of some Auto Immune Diseases, as well as soy or dairy. I just don’t know what to do. I can’t live like this. I work full time, I have my own home and family to take care of, as well as an elderly mother who needs me to take her to all her Drs appt, manage her meds and finances, as well as a disabled brother who lives with her, I manage his finances too. My other brother lives with them also, but he has some learning disabilities and does not drive. I know I have to stop doing so much, but who is going to do it. How am I going to do it if I continue to feel so sick??????

    • Sara, Sorry it has taken so long to reply to you. You certainly have you hands full with taking care of your Mom and having your health problems to deal with can’t be easy. Have the doctors come up with anything that has helped you feel better? I have a lot of digestive problems, but diet never seems to have anything to do with my adrenal problems. And, no I have never tried any alternative medicine or doctors, I have heard of some people finding some relief with massage, but I’ve never tried. Wondering what meds you are taking and what your doses are? Are you seeing and endo or just a regular doctor? Please email me if you want so we can compare notes.
      mo

  2. I too have Addison’s and Crohn’s it took them 8 years to finally diagnose me with Addison’s… I have been diagnosed with it for 15 years and 10 years with Crohn’s… The Addison’s is under control but can’t say the same f

  3. I just found this old blog searching for something else. I am a 37 y/o female going through hell right now. I was diagnosed with Addison’s Disease at 17 y/o after being sick for a year and almost dying 2x. Fast forward many years….I have, in the past 20 years with Type 2 Diabetes, Fibromyalgia, chronic Migraines, severe bilateral hip bursitis and now I have a severely infected cyst on my genitalia which may be MRSA….I don’t know how much I can deal with. Oh add obstructive sleep apnea to the mix. And my current endo office is useless :(

    • Autumn, I’m so sorry that you have so many problems with your health! Have you tried to find another endo? Where do you live? I am very lucky that I found an excellant doctor, but I’m not sick as you. Thanks for visiting and commenting. Feel free to email me.

  4. I was so glad I found this. I have been having symptoms of extreme fatigue, nausea, muscle and joint pain, salt cravings…and I have crohns. My GI seems to think these symptom are nothing but I know something is not right. I saw something about Addison’s online and I have all the symptoms, except for the skim pigmentation. Any suggestions on how I might go about getting a doctor to test me? I’m not very assertive and leave my GI appts in tears but I’m so tired and just want answers.
    Thanks for sharing your experiences.

    • Vanessa, I’m so sorry that you are having such a hard time trying to get your doctor to listen to you. Do you have another doctor besides your gastro guy? You could ask the other doc what you think, and tell him/her that you really want to be tested. OR find an endocrinologist who should listen to your symptoms and test you. I don’t have the dark skin pigmentation either, because I have secondary adrenal insuffiency, which is easily found with the right tests. Email me if you want. Good luck. AND doctors should not make you cry……jerk.
      mo
      maureenk83@sbcglobal.net

  5. I was diagnosed in Dec 2012 so it’s all new and scarey atm. My job really puts strain on me and it annoys people in work that I’m tired a lot, they don’t understand they think I’m slacking when I’m not.

  6. Have you been diagnosed with both Crohn’s Disease and Addison’s? I have been going through testing for years and they are now looking at Addison’s, My daughter is plagued with autoimmune diseases including: asthma, psoraisis and CROHNs… I am also seeing some symptoms of Addison’s. I was wondering if anyone else had multiple AI diseases?

  7. Hey Mo- Good post. I am secondary AI. I live in a Hypopit world. My Hypopit has the end result of Addison’s and a host of other gland failures. I agree, AI is the worse!!!

  8. I’ll follow you anywhere Mo and I think the explanation here is simple and easy to understand but I feel bad for you. Also feeling sorry for myself, I cannot lie, because the last three weeks it is hard for me to MOVE at all. Hard to get in and out of bed, to walk, to sit to sit down….I don’t know what caused this regression and I’m too tired to go to the Dr. but will work through it. Love you girl, You Twin Laurie

    • Laurie, You saw the nasty post, I am still pissed aout it. Anyway, I hope you start feeling better soon, I have been down and out for so long I can’t believe it. Maybe it’s the heat, even though I never go out in it.
      mo

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