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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.
In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my "Due Diligence" .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your "Due Diligence"! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was 'BECOMING MY DISEASE"! It became my FOCUS in life.
I had to have a "Coming to Jesus" moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.
I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I'm just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don't allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn't staring me In the face .. it doesn't exist .. denial has worked wonders since 2007 and I've live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering
Replies to "Hello All, I am going to say something that may not go over well .. BUT..."
I was diagnosed with MAC on july 5 2016. I dont feel bad at all but kinda freaked out regarding the side effects of the meds. Cried and cried until spmeone prayed for me and i know i have to think positive to be healed...
Welcome Sophie, I am glad you have found our Forum .. I feel confident you will find a LOT of good information if you can find the time to read through the posts going back to the beginning. Plus you will find many kind supportive people who are here walking the same journey you are on .. we are all in this together. Personally I have been off the antibiotics since May 2014 . . so as you said .. THINK POSITIVE! You have a great attitude .. you just keep it up and you will be just fine! Sending you a hug! Katherine
Hi Sophie, You are right to think positive! I was diagnosed with MAC and Bronchiectasis in beginning of March and didn't see a pulmonologist until mid-April. I also feel fine at this point so I probably won't be starting treatment at this time but I will discuss it with Doctors that specialize in this in August when I go to a clinic here that treats just Bronchiectasis and also MAC or NTM. I think the most important thing you can do is research. Its scary at first but focus on the success stories - there are many of those too. And by success, I mean learning to live with this disease, to accommodate it, to work around it. And find doctors in your area that know a lot about this. You need an infectious disease specialist along with your pulmonary doctor. What state are you in? Katherine is absolutely right - read all the past posts on this board. You will learn so much. You are not alone in this! Hang in there. Janet
Did you have any side effects with your meds? Any eye problems????
I haven't started the meds yet. My Dr told me it could affect my hearing but, it shouldn't bother my eyes. What mycobacterium do you have? Do you have abscessus?
No I don't have that. Just the non tb mac. So far I'm doing okay on the meds. Had a little diarrhea, which the doc told me about but that went away. My doc told me that any side effects should occur within the 1st 30 days, if any, then everything should go smooth.<br><br><br><br>
@katemn (Katherine),
I so agree with your message about not letting us 'become our disease'.
While technology may be a wonderful thing, we can get so wrapped up in searching online for medical information or the messages on this blog, that we let disease encompass our day. There is a life to live out there. I don't ever want NTM, MAC, Bronchiectasis or any other disease define who I am. No way! 🙂
Paula
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@katemn, your message yesterday was among the strongest, most sensible and reasonable, reassuring I have seen here or heard among my associates in my senior community. Too many of my neighbors dwell on the information they have -- and the information they still want -- about their infirmities (better word than "illnesses" or "diseases"). Their attention is dominated by the physical and mental miscues (better word than "accidents," "foul-ups," "injuries" and the like) they catch themselves enduring. I can't say better what you have said above, so I hope everybody will read your solid affirmation of who you are and what you are not. Thank you so much.