active 2 days, 4 hours ago Lizzy Finn

@lizzysawrus

Member since July 23, 2019

Total Reads: 4,696
Total Posts: 10
  • Cancer is what we are all afraid of, isn’t it? All the TV shows we watch, the movies we see, the dramatic health story is normally a cancer diagnosis. We’ve all seen the image of the woman stoically losing her […]

  • It’s pretty scary out there, isn’t it?
    Get through this, there are no second chances. I’m listening to some of Placebo’s music right now, which seems fitting.

    It’s an ironic world out there in the chronic i […]

    • @lizzysawrus Great article! I have welcomed many of my family members and friends into our world. Many of them told me they had no idea how difficult life is like this so yes, better understanding is one of the bright sides of this awful virus.

  • Also, glad MTX is treating you well. I hear it is very well tolerated once you get used to it. At the moment it is giving me about 5-6 days of severe nausea 🙁

  • Ah, sorry. I am on 7mg a day and we *were* tapering by 0.5mg every two weeks (so 1mg less per month) and now we are tapering 1mg every 7 weeks. So it will take me 7 weeks to go from 7mg a day to 6mg a day. Which means it will take FOREVER to come off them. I am in steroid withdrawal – my body isn’t naturally making it any more. S it is really hard…[Read more]

  • I saw my specialist today and let’s just say, it wasn’t the news I wanted.

    Nine months, now, I’ve been sick. And I’ve stayed strong throughout it all. Through the month in hospital when I was poked and prodded […]

    • 1 mg of steroid (Prednisone?) every 7 weeks? is that right?

      • to further explain my confusion: the body naturally produces (barring cushings syndrome of course) 5 mgs of cortisol a day. So you taking 1 mg every 7 weeks is odd. also. I am on MTX and have been for almost a year; it has been very good to me. hope the same for you.

      • Ah, sorry. I am on 7mg a day and we *were* tapering by 0.5mg every two weeks (so 1mg less per month) and now we are tapering 1mg every 7 weeks. So it will take me 7 weeks to go from 7mg a day to 6mg a day. Which means it will take FOREVER to come off them. I am in steroid withdrawal – my body isn’t naturally making it any more. S it is really hard and is making me really sick. I started out on 100 mg per day 🙁

      • Also, glad MTX is treating you well. I hear it is very well tolerated once you get used to it. At the moment it is giving me about 5-6 days of severe nausea 🙁

      • RE: MTX and nausea: i get it; that is why i switched to the Sub-Q. So i give myself a shot every week. are you taking the shot or pills?

  • Well, it was bound to happen at some point. INFECTION WATCH: CODE AMBER!

    As those of you with a compromised immune system know, the biggest threat to my health right now is picking up an infection while my […]

  • Also known as how to travel (or not) with a chronic illness whilst immune-compromised, but I didn’t think that was a catchy enough title!

    It was my birthday this week. Now, I normally go on holiday for my b […]

    • thank you Lizzy for sharing; and belated Happy Birthday 🙂 i almost got anxious reading this only because yes, trying to prepare and anticipate the limits of such an adventure is very…very…hard. and no one gets that ..except us. All the limits you have to anticipate and/or put in place can sometimes confuse people. and the snorkeling, the scratches, …i was right there with you worrying – lol. and then re-setting your own personal expectations: that can be depressing, and frustrating: Someone who was once a strong swimmer having to be pullled along by the JetSki: I know was hard.
      I am ALWAYS thinking exit strategies now. and yes, you are right: spontaneity is a huge NO.
      it does take away some of the joy – but we learn how to find joy in places most people don’t.

  • This is beautiful – thank you for sharing 🙂

  • Great job! I went for a hike (3k, all flat) last week and was SO THRILLED that I managed it, it was such an amazing feeling. Yours sounds intense, you were really brave. I wish for many more successful hikes for you 🙂

  • Well, friends, foes, followers, life keeps moving forward. There is no pause. There is no off switch. There is sometimes no respite. I try to stay positive. I try to “keep my pecker up” but this year has tes […]

    • I’ve done my chronic illness partner-less so it’s my normal… it still sucks but it’s all I know. I feel so bad for you. I know you’re strong, you know you’re strong and will get through but right not, or sucks.

    • Raises Hand – Going it Alone here! and frankly, its working for me; it means everything gets to be about me. :))) but seriously, there are (alot) of times that i just have to suck it up and get stuff done (that hard chore, that drive to the lab appointment, etc.,) because there isnt a partner standing by to do it for me.

      However, I am stronger for it. MUCH stronger.

    • @lizzysawrus I can’t imagine the shock you faced hearing this from J! I was shocked to read it; I actually gasped out loud. Thanks for the positivity despite that it is a terrible situation for you and for providing tips to help others may be going through the same thing. I just happened to get lucky in meeting my husband the year I got sick and he has stuck by me now for 18 years. That is more uncommon I think and I realize I am blessed. Hang in there and focus on you. Just keep swimming . . .

  • It is now October  – four months since I was diagnosed with Dermatomyositis. I’m going into my fifth month off work. October 1st was originally the day I was planning to go back to work.

    Four months have flow […]

    • hi Lizzy that float therapy sounds AWESOME. I have to admit, i have taken a slightly less forgiving path ..lol; i do push my body but that only started once my treatment kicked in (I was diagnosed May 21…and I didnt feel strong again until August 4th) I for sure rest, but within the time frame that I would have rested without this disease. I suppose that sounds like i am in denial of this diagnosis – and maybe i am …lol…but for now, I am eager to see how much i can feel “normal” and do the things when and how I want to; not when and how this disease wants to; I wont lie: it is hard, and i feel the “lessening” of my abilities but i keep pushing. If this disease can come upon me out of nowhere, perhaps it can go away just as easily 🙂

  • Wow, well done! Your story is similar to mine – diagnosed in June and had incredible pain and weakness. I’m so impressed that you are managing to move more for your own health and happiness. I still can’t manage more than a 15 minute walk but every day I hope that with rest, and good food, and sleep, and meds, I am moving back towards being well…[Read more]

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