The psychological aspect of dealing with bronchiectasis and MAC.

Whenever there is chronic illness, depression, and other phychological issues like anger, and low self esteem can creep into your life. Is this normal? How do we deal with that? I’d like to invite a fellow member, @megan123, a retired social worker; to join this conversation.

@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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@mediaguy Hello. Welcome to our group. You are a good guy to come on this site on your wife's behalf. Does she have any interest in coming online with us also? This is a good place to benefit both of you. Do you have any questions?

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@jkiemen

@sophie1019 I feel that I am getting more depressed as time goes on. Someone posted that maybe it was mourning the loss of health and vitality. I think that is part of it but the unknown is also depressing and all the what ifs and staying away from people because of colds, flu's and viruses. All of it gets overwhelming. Not having a great treatment option is the other. I keep saying WHY IS THERE NOT ANY PROGRESS IN TREATING THIS DARN THING!!!!. If I didn't have prayer, I don't know if I could make it through.

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@windwalker she's been reading the posts as well. I'm sure she'll jump in when she's ready. Nothing yet. Just trying to get more informed.

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I am treated at Mayo in Jacksonville. I have severe Crohn’s and MAC. I’m on Remicade for the Crohn’s. I’m on the three antibiotics for MAC. I have been being treated since being hospitalized in December, and I am still growing MAC. I work full time as a teacher. For the last few months, any anxiety that is sudden causes severe muscle spasms in my mid/upper back. I am wondering if this is related to the MAC, especially because it is right behind my lungs. Does anyone else have this, because I never had it until I got sick. I would describe the pain as a ten on a one to ten scale, but once it is over it doesn’t come back until something scares me again. It is very disruptive at work, because it means I cannot defend myself
in a stressful situation, due to the pain. My job is very stressful, and I need to be able to react. I was never like this until I got sick. As I understand it, applying for disability has no guarantees of qualifying , and I cannot afford to be out of work for the required time limit before applying anyway. Thank you all If you can share any personal experiences with this, and please share what helped you, if anything.

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@pinktower Hi, I’m a teacher too. I also get severe, random, shooting, muscle pains before and during an exacerbation. If chills and/or headache follow, I know I’m in trouble. I get them all over, and they feel like hypodermic needle pain at times. Worst body aches I’ve ever had. I do get them a lot more in my thoracic area than in years before. Sometimes sharp pains in chest, too, although since my doctor says lungs cant produce pain sensation, (so then it’s the pleura, maybe?) Sometimes massage can help a little, temporarily. Lots of water, and acetaminophen or ibuprofen, as have been mentioned. Gentle stretching when you can.

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@pinktower

I am treated at Mayo in Jacksonville. I have severe Crohn’s and MAC. I’m on Remicade for the Crohn’s. I’m on the three antibiotics for MAC. I have been being treated since being hospitalized in December, and I am still growing MAC. I work full time as a teacher. For the last few months, any anxiety that is sudden causes severe muscle spasms in my mid/upper back. I am wondering if this is related to the MAC, especially because it is right behind my lungs. Does anyone else have this, because I never had it until I got sick. I would describe the pain as a ten on a one to ten scale, but once it is over it doesn’t come back until something scares me again. It is very disruptive at work, because it means I cannot defend myself
in a stressful situation, due to the pain. My job is very stressful, and I need to be able to react. I was never like this until I got sick. As I understand it, applying for disability has no guarantees of qualifying , and I cannot afford to be out of work for the required time limit before applying anyway. Thank you all If you can share any personal experiences with this, and please share what helped you, if anything.

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I don’t know if this will help, but whenever I was under stress at school I got a severe pain similar to what you are describing. The difference is it would last anywhere from a few days to thirty days. I used to use a heating pad at school. (Sometimes my room smelled like rice!) When I had an endoscopy done lots of inflammation was discovered. (Gastritis and peptic ulcer). The gastroenterologist said those kinds of issues can cause severe pain in my back. It is debilitating pain. My MAC was discovered after the fact – which doesn’t mean I didn’t already have it. I am not convinced, but that’s what the doctor said about that pain.

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Another blow for psychological aspect. I got turned down for Life Insurance due to MAC. Tried to get a policy for when I retire. No Go!!!.

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@jkiemen

Another blow for psychological aspect. I got turned down for Life Insurance due to MAC. Tried to get a policy for when I retire. No Go!!!.

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@jkiemen, What a drag. Sorry to hear that. I had to go years without medical insurance due to being 'uninsurable'. I had to pay for everything out-of-pocket.

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@megan123

Dealing with Lung Diease, MAC, MAI, Psedomonas etc….is very difficult, and emotionally can lead to depression and anxiety, especially when first diagnosed…this is so normal…and happens to us all, to various degrees, depending on your diagnosis and the severity of symptoms…it's comparable to the grief we experience, when losing someone…This is the same type of grief with loss of health…symptoms including lack of joy, and reduced interest in things that used to bring us happiness. depression seems to be more common among women than men…it's important that we recognize the symptoms of depression, and get the support that we deserve…Many times our friends and family members don't understand what we have to deal with our Lung disease, which can isolate even more..This support group empowers us to learn as much as we can about our disease, but the emotional journey, I find is just as important as important, if not more so because it impacts on our physical health as well. I continue to experience the roller coaster of emotions, but have a therapist that helps me with my spiritual journey of mindfulness and awareness for the unchartered road ahead…peace and love.

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Dear @rwhite, Good morning. I haven't seen you post in awhile. Are you alright?

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@windwalker…Hi Terry…dealing with Chronic illness, such as lung disease, can be so challenging, both emotionally and physically…when you are first diagnosed, it is normal to go through a fluctuation of intense emotions…initially you may feel somewhat numb, as well as anger, sadness and depression…it is comparable to grieving death, but this is grieving the loss of our health…ithe healing process starts with awareness of how we are doing, and plugging in the necessary support systems ie counselling…The Mayo Clinic support Group is the beginning of empowering yourself with knowledge to help you in this challenging journey…I have never met such a caring group of individuals that are so knowledgeable..Terry, our mentor is an example of the courage and wisdom that she gives everyone, as this group of warriors continue to partner and help one another live our life with compassion and dignity in our journey ahead….💖

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@windwalker

Dear @rwhite, Good morning. I haven't seen you post in awhile. Are you alright?

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Terri M, What kind of saline do you used? Is there a generic or brand name of that? Also,have not have any e-mails from the group in a while. Did I get disconnected to the group? I got a call from my ID doctor saying I got 100 colonies. She said she will put me back on meds. I don't fell like too but I have been felling sick and tired, shortness of breath. Sometimes my back hurts too. Thank you so much!! Cila

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@cila

Terri M, What kind of saline do you used? Is there a generic or brand name of that? Also,have not have any e-mails from the group in a while. Did I get disconnected to the group? I got a call from my ID doctor saying I got 100 colonies. She said she will put me back on meds. I don't fell like too but I have been felling sick and tired, shortness of breath. Sometimes my back hurts too. Thank you so much!! Cila

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@cila Yikes! 100 colonies! No wonder you aren't feeling so good. Do they know what specie of mac you have? I am on 7% sodium chloride made by Pari it is called HyperSal 7% sodium chloride.

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I first felt relief that I did not have lung cancer, I next felt denial, I next felt mad, Now I feel scared!! I am going to a new pulmonary doc on Fri and I have lots of questions.

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@ameliar, I am glad that you are going to your doctor's appointment fully armed with a list of questions. My doctor loves that I do that. I hate that you are scared, know that I am here for you any time. My doctor told me that I can live out a full life with this disease provided that I stay on top of it; which I do religiously. Do you know the extent of your disease?

Liked by Jennifer

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