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Thu, Oct 31 8:29am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait… I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

Mon, Sep 2 9:17am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker and others in this storms path. I can't even imagine what you all are going through. With a threat like this and the uncertainty of it all. It is so hard get around with chronic illness on a good day. May the coming days be easier as each day passes. With your community, family and pets being safe, calm and comfortable. Finding shelter from the storms looking out for one another as you help others and receive help for yourself . May God send blessings your way. All of you are loved and appreciated for all you do ♡♡♡

Sun, Sep 1 8:22am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker , I'm praying for you and all affected by the hurricane. Praying for safe travels by those needing to get out of the way of this storm and for those unable to leave. Spare them all from the devistation of this hurricane. Show all of them the power of your love and shelter them in your arms. Amen
Becky Lyons

Mon, May 13 7:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I can't tell if pictures came through of my email or not

Mon, May 13 7:12am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker , Thank you for getting back to me so quickly. The DNA Test is an at home one that is from mayo clinic and then sourced out. It was heavily advertised around last Christmas and again at Mother's Day. It was sent directly to my e-mail hence my resent curiosity of the test. It is not something the doctor would order you just buy it at the mayo clinic website for 149.00. I would do it if anyone else had good information from it. I have so many diseases that I'm surprised I don't syndrome after my name. I would welcome any new information thru reliable testing. So I am asking the group if anyone has used this and had received helpful information from it. Thank you so much for your tireless devotion to our group. You really stepped up after we lost our group leader. You are loved and appreciated ♡♡♡
Becky

Thu, May 9 5:57am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

It has been a awhile since I posted anything but still reading all the emails from the sidelines. Wondering if anyone has used the mayo clinics genetic testing and was it helpful. I am thinking about getting one.
But Money is tight.

May 30, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you @suzie2017 and @windwalker. Thanks for your kind words. I first thought she was having mini strokes and having hearing issues . The hearing aids helped alots but there was still something wrong. Moms has been in a nursing home about 6 years and on hospice since January. Me and my step dad took care of her for a year before she went to the home. My anxiety is winning the battle most of the time with fidgeting and hand clenching and pill rolling (where my forefinger and thumb keep making a motion like there is something beween them that I'm rolling into a ball) not being able to complete a task. ( I am unable to make or answer the phone calls and its hard to explain it because I don't understand it myself) . My slow speech and stutter are apparent signs. Now my fingers and toes are twiching and have a mind of their own all day and at night too. Recently i have been tripping over nothing and falling into walls and furniture. Mom had hulusinations and she only told me about them after her diagnosis.
She said she knew they weren't real. I thought HD was a rare disease, but just like ntm, people dont talk about them enough. Sights like these can do wonders so people dont feel alone even with an isolating disease. Well thanks to everyone for keeping the conversation going. Katemn would be proud and is always looking out for us.
Becky

May 30, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@tutti, hope you are doing ok like most of us just hanging out in the background of this sight and soaking up the information when we can. I have been on disability and medicare for 14 years. I had a back injury while doing private duty nursing trying to help a patient get out of bed. I had a failed back surgery after trying everything else. I tried different nursing jobs but could not continue working and taking medication. I was denied disability the first time and appealed on my own and was approved the second time around. I have heard they almost always say no the first try so keep appealing until you are get your benefits. MedIcare is a benefit that come along with my disability so if you are not getting it you should contact your social security office. They deduct the premiums from my checks. It's a secondary insurance to my husbands for me. I have treatment resistant deppression, anxiety and had a hard time concentrating and finding my words sometimes. I sought many opinions from many specialist and was taking mother with me to many of my appointments. A neurologist notice symptoms of Huntingtons chorea in my mother at my visit. We both were tested and have the defective gene and will develop debilitating symptoms as our brain cells die. Recently I had a knee and foot injury just doing chores at home i started loosing my balance and tripping over my own feet. My physical therapist is helping me and my walker is a necessity now. I love everyone in this community . Im trying to keep up to date on this sight but its very hard and sometimes i have to force myself to delete messages. I saved some messages for reviewing at a later date. I hope everyone's memorial day was a good one. If you cannot work you should get disability and Medicare through the social security office that you have already paid for. Take care and stay strong!
Becky