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going for biopsy/dealing with it for a year

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amanda0322
amanda0322

Hi. I've been dealing with sarcoidosis for a year now... I was on prednisone (60mg) , in a wheel chair and couldn't even work or do things with my two beautiful girls. Then all of a sudden all my chest xrays showed clear and I was tapered off all my meds.. Until Christmas... I was completely paralyzed on my left side, losing vision in my right eye, having trouble breathing, and gaining weight like crazy... Well I now have had a CT scan done which showed a huge mass in my lungs and several smaller ones.. My mom was diagnosed with sarcoid at 23... Followed by lymphoma at 38.. So I now have a biopsy scheduled on the 23RD to fund out for sure what we are dealing with. I am a 30 yr old mother of two. This is now affecting my eyes, lungs, nerves and I am starting to get depressed... HELP!

0 likes, 30 replies

30 Replies

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  • Nickademus
    Nickademus amanda0322

    Posted

    The biggest deal ive dealt with when I think it over is coming to terms with this is now my life. Humour, stubbornness, determination, tears, has got me to this point. Im 42, single, now overweight due to the steroids, on water tablets so I pee all the time, other meds upset my stomach so I end up with the runs. Skin ulcers, hair fall out. scars on my legs from the infections I had at the time, bad breathing and I have a CPAP machine to sleep with at night which leaves imprints on my face in the morning. This is not my advert in a singles column!!!! I look at that and I would run a mile. But my friends tell me if someone loves you they will love all those things as well

    I do wonder if youre not sleeping well, then worrying in the night and the next day things seem worse in everything. Ive done this myself so many times

    • amanda0322
      amanda0322 Nickademus

      Posted

      They told me that my oxygen drops at night and that I may need a cpap. I have had 2 sleep studies done and both said about the same things... I do stay up most nights and wonder what if. I go and look at my children sleeping and wonder if that's the last time I'll see them... And the same about my husband... I have gained a bunch of weight and that just makes me more sad.
    • senga66
      senga66 Nickademus

      Posted

      Hi, my names Senga and I've been following yours and Amanda's conversation, you are incredibly intuitive, if I wasn't old enough to be your mum I would jump at the chance of knowing you. I have a cpap machine too and the way to stop the marks is to wash it in washing up detergent every day, it make the mask more durable. This site is amazing, my Sarcoid is not causing too many problems just now, but I know it's always on the doorstep. The support from this site is invaluable, I offered help to Amanda but bowed out because you were saying the right things. God bless you.
    • Nickademus
      Nickademus senga66

      Posted

      aaaww thanks for your commentsredface. 

      Age is a state of mind. Thanks for the advice with the cpap mask. I dont wear makeup because it makes it look worse. I do think we all get hangups such as the mask, the weight gain and the side affects but at the bottom of it we are just people with this set of issues. I have a saying on my wall at work that goes

      If everyone put their troubles on their doorstep for others to view and take, people will look at yours and take their won back in.

      there is someone else with a set of issues we dont want

    • amanda0322
      amanda0322 senga66

      Posted

      Thank u for wanting to help.. Your words are welcomed just as much.
    • Nickademus
      Nickademus amanda0322

      Posted

      I agree. I know I rattle on alot but knowing others think the same and can add their pespective helps everyone

      We are not alone out there in the wilderness of Sarcoid

  • Nickademus
    Nickademus amanda0322

    Posted

    oooooh nooo not little ones!!! they always want to wee and wipe their hands on youcheesygrin

    I am Head of Dept in a Secondary School so I teach Y7 -13 ages 11-18. Saying that mine always want to wee and wipe thier hands on each other. Thats just kids

    • amanda0322
      amanda0322 Nickademus

      Posted

      Haha.. Yes they do!!!!! That's so funny... Yes they do tend to be kids and want to put ever thing on everyone lol
  • Nickademus
    Nickademus amanda0322

    Posted

    I can sense from your words that youve been lifted by just talking it through, knowing youre not alone and other people genuinely understand. Only those of us going though it can truly understand. Despite your mums ill health she is still with you and can support you

    I also think the fear of it is paralysing and as much as you want to be practive and share the fear is overwhelming. Ive been there too. Something which i dont want to discuss on this public forum happened which forced me into sharing my fears with my mum. And I can say she didnt react like I thought she would, she helped me. Perhaps you are not only scared of telling your husband because it becomes real, but also you are fearful it will be the last straw for him and you dont want to give him a reason. I think talk to him or write it down if you cant say it in person

  • Nickademus
    Nickademus amanda0322

    Posted

    On my CPAP test I stopped breathing over 20 times an hour. I have 16cbu llbs of pressure. When I first got it it was no chance I hate this. It took me about 6 weeks to get used to it and now I cant sleep without it. A friend has one and she hasnt embraced it so Im glad I have. Its the biggest passion killer ever but so is snoring like a pig! My Sats went down to about 65% in the night so I needed one. ON my last lung function test they told me that last year during the day I was only absorbing 60% Oxygen and a year on that Im now absorbing 72% during the day. They dont know why its low. Ive been off steroids for 4 weeks after being on them for 2 years. My next lung function will give them a truer picture of whats going on. 

    Think about kids in your class. The ones who are allowed to stay up dont have a routine, done get enought sleep. Grouchy, needy, not listening, dont fucntion as well, no so alert to what going on...... see my point. I think  you need some quality sleep

    • amanda0322
      amanda0322 Nickademus

      Posted

      Wow... My stats only went down to 80 but I had 5 episodes of stopping breathing. What time is it there now? It is 9:58 am here. They have given me some meds to try to help me sleep but I just feel like a pill popper and that medicine controls my life. But I can't go without any of it or I can't function for the day.
  • Nickademus
    Nickademus amanda0322

    Posted

    its 4pm and Im on half term so I will make this the last message for today so yu can get some sleep. Try things like lavender, on your pillow, my mum is a homeopath and she gives me stuff to sleep. I know lots of people say it doesnt work but it does for me and it doesnt do any harm. I take 1000mg x 4 Co dydramol (pain), 200mg x 2 Hydracloxocloroquine (joints) 400mg x4 Ibubrofen (pain, inflammation) 40mg frusaminde (water retention) 25mg Atarax (anit hystermine for itching) 25mg Omozeprole (stomach pills to stop others reacting) 50mg losatan to regulate blood pressure. Just stopped prednislone after 2 years. Try alternate things rather than just pill popping. Im always so tired I dont need pills but when i do wake i cant get back to sleep and then the demons come. I think you will sleep better tonight as you have off loaded some of your burden and have a little bit more peace of mind

    Sweet dreams and any time you want to chat then come and talk

    Kindest Regards

    Nicola

  • bert73173
    bert73173 amanda0322

    Posted

    I suggest sharing your feelings on Sarcoidosis with family and loved ones.  My wife has had for oveer 25 years now.  At first, I could not figure out why she was so tired and lethargic for someone in her early 40's.  She couldn't walk up 2 flights of stairs without taking a breather.  I went to a support group with her and found a group of 50 Sarcoid patients just like her who also had shortness of breath and were tired.

    One lady who had a portble oxygen mahine with her, was asked how she got around and said " I just packs my bags".  Meaning, she lived with it as best as she could and kept on going.

    I've discovered a community of people through the 25 years that is always changing.  Some people come to support group meetings and never show up again.  They may be the lucky group of roughly 50% of Sarcoid patients whose symptoms go away within 6 months.  No one knows why.  Or they may be lucky that the disease is in remission or at least acceptable to live with. The group who show up meeting after meeting is the group that demonstrates their resistance to letting the disease define them. 

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