View Full Version : New thread from "Upset about giving up my dog"
04-11-2008, 05:30 PM
I wanted to say say to Olwa, thank you for noticing I was gone! :) It was so nice of you to think of me.
Things haven't been going so well, the meds I was on weren't working and I've been in pretty much a constant state of flare, blurgh! Anyway, they were hesitant to put me on Methotrexate because I also have NASH which means I have liver issues but not due to alcohol and they are concerned that the new meds will put me into liver failure. Well, they (the team of doctors I have) have decided to put me on the new meds and watch my liver functions as these are my last hope, I am allergic to the steroids and the hydroxychloriquine (sp) isn't working, what's a girls to do! ;)
So I have been in a bad way, very weak and very sick, oh and I was told that I am dying, how long I have, who knows they said five months or 20 years, hhhhhhellllllllloooooo! Anybody else been told this? So I am trying to deal with that and we rehomed a bunch of our cats and Chloe (our dog) is leaving in two weeks to go to a really great home so that's good. We are also tryingo to get custody of my 13 yr old step-son who I adore but it's a battle and that's hard, lets see, what else....oh I was just diagnosed with PTSD, what a surprise! ;) Life, it just keeps going whether you are ready or not. :)
Well, I gotta run, I'm sorry I can't respond to anyone right now, I'll hopefully feel better soon and will be able to join in again. Take care all!
04-11-2008, 05:46 PM
My word! You poor thing...hugssss. Wrest up and get your butt back in here so we can hugsssssssss ya.
04-11-2008, 06:20 PM
Oh my goodness, onpointe....when it rains it pours - and it sounds like you've got a hurricane on your hands. Flares pass (usually) and we'll hope and pray the meds take hold and do the trick for you. Take good care of yourself. Pop in when you need a lift - we'll all be pulling for you. (Glad you've found Chloe a new home...I know that was weighing on your mind.)
04-11-2008, 06:40 PM
Sorry to hear things aren't going so swell. Flairs without high heels do suck the life out of us. Even to sit at a PC can be trying. We understand...
Who said, dying..your doctor? Was he making light of it, like we all die at some point. If so, seems stupid for the lack of a better word.
Did he/she say why they came to that conclusion...was it more said like he did not know...anything can happen between 5 months and 20 years.
Don't stress over it...live life as full as you can, stop stressing over his words as we know stress feeds the entity IT.
What happened if I may, what caused the PTSD. Have you talk about it with anyone. Need someone?
Indeed life keeps happening around us...it doesn't stop. Sometimes we have to jump on where we can with what we have. Sulking, worrying..stressing just robs us from the day..from life. Bit by bit, it chips away at us...don't let that happen. We should all enjoy, make the most of each day as if it was our last...instead or worrying about what has happened, what may happen...
You started to destress your life. Keep doing it...Just do the best you can...it is good enough.
And I hope and pray, each day you feel better and better. Enough to enjoy the Spring...the blooms, the birds...It is a great day to be alive. Enjoy it and don't worry about 5 months or 20 years. Give love, get love everyday...do the things that matter...
04-11-2008, 10:02 PM
I am so sorry to hear that things have been going badly for you. You have been through such an ordeal and it seems as if they just keep coming.
Just FYI, I was diagnosed with Lupus in 1985. At that time, my "Team" of doctors told me that I might have six months to live, at most! They told me to make sure that everything in my life was "in order" because I was in such bad shape that I might not live to see Christmas. Now, that was in 1985, it is now 2008!! So, what the #@!# do they know????
I did put my life in order, I renewed and re-energized my faith. I made a determined vow that I was going to fight this disease, I was going to take control of my health and my life. It took many, many YEARS before I began to see the light (no pun intended) and in 1995, I started slowly going into a form of remission. That was 10 years of fighting, 10 years of one flare-up after another, 10 years of multiple hospitalizations, 10 years of medications that worked sometimes, but didn't work most of the time, 10 years of declining health and very few good days! But, here I am today - downgraded to Mild Lupus in 1995 and I have remained there for the past 13 years!! I have lived with Lupus for 23 years and I was told I'd be gone in six months!
Onpointe, do not give up. I know how hard this is, fighting all of the time and nothing seems to work. I know how hopeless doctors can make you feel. But, do not stop fighting! Do not give up! Envision your future and then make each day a new beginning with that future in mind. Live each day sharing love and giving joy and I guarantee that love and joy will fill your days, every day. We are only given this moment, one moment at a time. I am praying that every moment of your life is filled with love, joy, Peace and Blessings!
04-14-2008, 01:01 AM
Thank you all for your kind and uplifting words! You are all so sweet! :)
I just started taking my new meds and so far so good, I haven't had a bad reaction and I think it's too soon for it to really be making a difference but something has changed, I am starting to feel better. One thing I think might be helping is that we took all the carpet our of our house that was glued to the floor with this weird oiled pad that is "supposed" to keep liquids from going thru the pad, FYI don't pay extra for this pad, it doesn't work!!!
As far as what my doctor said, let me say this, he is a very nice older man and we have a really good rapport, this is my GI doc that I've had for five years now and he almost cried and then said some "choice" words when he found out it was a diagnosis for SLE. He has to watch my liver on these meds and what had happened was that he was looking over some notes while we were talking and I said "I feel like I'm dying" and he, without looking up because he was thinking about something else just blurted out "that's because you are", I then started waving my hands and said "hello, a PERSON is sitting here" and he quickly realized what he had done and apologized but then said that the reality is that I am a very sick young woman and they really don't know how long I have but with my liver and other issues it could be as little as five months or much longer but he really doesn't know. He's very good at what he does and is going to watch my liver enzymes like a hawk and wants to do a liver biopsy in the next few months, I'm glad he's tring to stay on top of it but he flubbed up when he told me that and he knows it. :)
As for the PTSD, I was just diagnosed, I've been having some really sever anxiety issues and just felt it was more than I could deal with on my own so I started seeing a therapist. I've only seen her once and we only got up to age 16 (yikes!) but her preliminary diagnosis is PTSD, I can't wait to see what else she has to say! ;) I had a very unstable child hood but thankfully I wasn't physically abused and it certainly wasn't as bad as a lot of people had it but it was still damaging. The chaos in my young life made me feel the need for control and that control manifested itself into an eating disorder as a teenager, thankfully (I was able to stop most of those behaviours, but not the thoughts behind them) and she thinks that this anxiety has transitioned into my adult life and is coming up again because of the chaos I've got with my health issues, surgeries (which I guess can cause PTSD all on their own???) miscarriages, ect...all things out of my control. I know I can do things to help with my SLE but getting it was out of my control. All of this in 1 hour! I think she's very good! :) There is so much "stuff" that I have to finish my intake at our next appointment, I think she can be a very usful piece of the puzzle and of course my faith in God is of the utmost importance and I am very fortunate to have a very loving, patient and understanding hubby, although he's having a hard time himself coming to terms with how serious this disease, but I'm confident that we will get through this together. :)
Thank you again for all the support, it really means so very much to me! I'll start trying to post more soon. Take care all, we are in this together!!!
A special not to saysuzie, your story has helped me sooooo much! It has made me realize that sometimes the human will to live is far greater than what any doctor can tell you! :)