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MeganMN

Coping with Anxiety

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Hey gang. I'm some way, I feel connected to all of you, as we are all struggling with some range of debilitating/life changing issues. I have found myself completely paralyzed by anxiety after my tests came back showing possible carcinoid. I can't DO anything, but just feel gripped by it. I go for  PET scan on Thursday and feel as anxious about a positive as a negative. Just anxious...... How do you deal?  Still flushing, still tachycardia, still palpitations, still exhausted beyond belief. And now anxious......

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I am thinking about getting a book called The Subtle art of not giving a F@#$. I just read Man's Search for Meaning. I guess what I am getting at is anxiety is about the future, the unknown. Just trying to live day to day, more now. I've been having GI issues for many months now that preceded the POTS. I have a colonoscopy and EGD in 2 weeks. He's doing both at the same time. Just want to get it over to figure this out. I've narrowed it down to either I have an autoimmune disease, like PMR or GCA(or possibly an autoimmune reaction to h pylori) or I have carcinoid/PNS. Thing is, nothing has shown up on CT scans, ultrasounds or xrays. I hope you find the answers you are seeking. 

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Dear @MeganMN - I am very sorry to hear about your added symptom of anxiety! It sounds like you're dealing with quite a lot all at once... I do agree with JimL that you may need to start taking things more on a day by day basis in order to lessen your symptoms from flaring up. I had to completely change the way I organized my life when my POTS was at it's worst. I've had to learn to be much more "spontaneous" with things now as I can't plan any sort of activities in advance anymore because I don't know how I'll wake up feeling that particular day. It may sound silly, but making that change had a huge impact on my life because I felt like I was changing a part of who I was. Making lifestyle changes, worsening symptoms and having to stop working for a while made me quite depressed so I have been seeing a therapist a few times per month. Everyone is different, but it has helped me tremendously in ways I never even thought of.

My advice is to just take it easy, keep yourself surrounded by good friends and family, and have an activity (perhaps something you can do around the house as to not aggravate your symptoms) or hobby to keep you busy - something you enjoy that will make you feel satisfied or accomplished! When I was bedbound I always felt so useless and scrap-booking actually really helped alleviate some of those negative feelings. 

Good luck with your tests on Thursday - Communicate these feelings to your doctors too. It sounds like you have some good ones taking care of you.

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Dear @MeganMN - I sympathize with your situation. I just had a CT of my lungs last week and they found a nodule in my pleura that - although very small - is highly suspicious for cancer. Worse yet - this type of nodule often is not the main cancer, so it could be that there is cancer somewhere else. For now I am to wait 6 months for another CT scan to see if - and how much - it grew. And today they will do some labs to check for tumor markers etc, I believe. So - yes, I totally get why you would be anxious!!! Who wouldn't be? The trick is to learn to control these feelings. First of all: think rational. They have not yet identified if you actually have Cancer. And keep reminding yourself that IF you have it there are so many excellent treatments out there today, cancer care is so advanced these days. Especially in early stages.

Second: one step at a time. I have decided that instead of worrying for 6 months I am going to just go on as always, no one knows anything yet. This is the case for you as well. @JimL is right - anxiety IS about the unknown and the future. There is nothing we can do about what will happen - but we CAN create our present. Think positive: you have so much good in your life TODAY, despite the challenges. I personally am more excited about starting to dig and plant in my garden ( ordered new plants, coming soon!!! ) then I am worried about that lump. --

Third: when you first joined the forum you had so many questions and uncertainties about your POTS symptoms. As your doctors are digging deeper you have found some clues that might be helpful in finding a cure!!! Imagine if they find something that could be surgically removed and stops some - or all???? - of your symptoms? I know - this sounds farfetched but isn't the worst case scenario - the one that you are so afraid of - also just a theory? 

And finally: when you DO get overwhelmed with anxiety ( I have found myself in this position often over the years ) sit back, take a deep breath in and exhale slowly through your mouth. When I do this I imagine that the fear and negativity leaves me with every exhale, It works, try it. And then, once you calm down a bit, start thinking rational again and then think positive. When I get to the point where I have to physically have to calm myself down like that and succeed I usually reward myself with something, anything. Instead of doing a chore I will do something that I enjoy, just for me. The heck with worries and anxiety - I don't need it! I'm gonna enjoy my present, not fear the future that I can't even foresee yet!!!

I also agree with @jklass44 - it is very important and helpful to talk about your feelings or they can overwhelm you. So - you are on the right track!!! Be well - I am praying for you!!!!!

 

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On 4/15/2019 at 12:53 AM, MeganMN said:

I have found myself completely paralyzed by anxiety after my tests came back showing possible carcinoid.

Hi Megan,

I am sorry you are going through this. The way I would look at it though would be to be fervently hoping and praying that it IS carcinoid, which is highly amenable to treatment & could resolve your suffering, than for it to be negative & another dead end, just left so lightheaded & limited with no relief. I have thought about having the chromogranin test myself as I dream of a treatable cause, however I have no flushing or diarrhoea, & the test is very expensive. 

22 hours ago, Pistol said:

I just had a CT of my lungs last week and they found a nodule in my pleura that - although very small - is highly suspicious for cancer.

Pistol I am sorry to hear this too,  waiting for a 6 month re-scan is obviously going to be hard unless any of the tumour markers show anything. If it reassures you any,  it was fairly common when I was working that a patient would have suspicious nodules on a chest CT that would turn out to be nothing. Resolution is so high that little things often show up like a small fibrotic lymph node that cause a lot of worry but prove benign. 

Equally though, the prospect of discovering an underlying & potentially treatable cancer may just put your POTS in the paraneoplastic category and hence respond to treatment. How long have you been ill, could the timescale fit?

B xxx

 

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They found a nodule in my lung around the time my GI symptoms started last year. Very low in the lung and uniform, probable granuloma. Thing is, it's increased in size somewhat. I have to wonder. I am due for another scan of it soon. I have to wonder if my POTS is PNS related based on my other symptoms, like diplopia. My PCP thinks it's all individual things. The PCP before didn't think anything: You've lost weight and your blood work comes back normal, be happy. Right. 

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I am sorry that you are going through this.  When I first got extremely ill a friend told me about a book by Toni Bernhard, How to be Sick.  It’s lightly based on Buddhist principles.  I found it helpful.

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I have waited to reply because there were so many amazing responses and I appreciate each and every one! I finally realized I needed to reply though, and even though I do not have the energy to respond to each one, it is okay. I am sitting here in the eve of my scan, pondering all of this and also, the week of Easter, which is significant for me as well.  thanks so much to each and every one of you for your kind words and hearts!  @Pistol I am sorry to hear about your added results on top of everything you have already dealt with.  I think that after talking with my husband, this is all so wrapped up in the death of my mother.  She died the morning that I was admitted to the hospital after passing out at work. I was in the hospital without my family around scared from being sick and then I have been on this emotional roller coaster with my health while trying to adjust to a new normal without my mom.  It is just becoming increasingly difficult for me to go through life and pretend that everything is okay.  That is the toughest part.  But bounce is what I have always done and I will have to get up and bounce with this too, it is just taking me much longer this time.  Thank you again for all your words, I will read and re-read them many times in the days to come!  Will post soon about the scan.

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Dear @MeganMN 

4 hours ago, MeganMN said:

It is just becoming increasingly difficult for me to go through life and pretend that everything is okay. 

You do not have to feel that you need to appear - or even BE - OK. You are not OK, you are scared and frustrated and no longer able to do what you are used to. There is nothing wrong with that, so you do not have to spend your already dwindling energy on making it look like things are OK. Break down if you need to - I have many times. Strength does not mean you are perfect or above anyone, it means you get back up. That's all.  

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@Pistol thanks for the message. Hard to not be okay with 3 little ones!   The radiologist (who also works at my hospital) called me at home to tell me the scan was negative. Woohooo! Now to explain the weird test results. Off to endocrine and probable mast cell disease. Oh, the places we will go.  Relieved about the negative scan, but hoping for some explanation of the labs.... Thanks everyone!!

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@MeganMN - I am happy and relieved that nothing obvious showed up in the scan!!!! Be well - remember: you cannot take care of others if you do not take care of yourself!!! 

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Excellent!

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I'm so pleased your result has given you some peace. If it is mast cell, I don't have much knowledge about that but there appear to be a growing number of treatments that people find helpful. Look after yourself & don't feel you need to reply. Just know that you're not alone in this and people care about you on here even though none of us have met in real life. 

Losing your mother at the same time as becoming unwell is also a major double blow to deal with, & I am sorry you had to go through both at once. I hope you have other supportive people around that you can lean on. 

Look after yourself,

B xxx

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