An update and a vent
I've been up and down of late. I've had some wonderful news and I've been struggling with other news - not so wonderful.
I am now teaching, I love my job, but it is hard with a chronic condition. I go to work come home and rest - I am thankful for the holidays where I get to recoup myself ever so slightly. I had Grade 5 in 2014 and this year I make a leap down to Grade 1 I am excited for the change.
We managed to buy our first home together, in my eyes its perfection. It needs some modifications but overall it's divine and we are so proud.
Christmas eve saw after 5+ years together an engagement! Yes, I am engaged!! :)
As you can see I have had some simply wonderful things to celebrate, and gosh, I am so grateful!
My disease isn't getting better, since my 6th lap in 2013 I refused more surgery, I can feel things getting worse inside me, I can see its affect on my constantly swollen and sore tummy. My specialist who is simply amazing sent me for a second opinion from his colleague, they're both top surgeons and the surgeon he sent me too was recommended to me years ago by Dr. Redwine when I sent him my files. He looked over everything and said I am in a bad spot, it's literally a rock and a hard place. He isn't convinced I can get pregnant or carry a pregnancy. He said even if I try I need to come to terms with that, my disease is "too far" gone and my outcomes look bleak. Well, miracles happen you know, I believe in them because I am one. But it's hard, when doctor after doctor tells you this. I just can't give up. And, I know someone else got pregnant, or someones friends mother's sister had the same thing and got pregnant...I get it, I get those stories. But they're not me, they're not my situation. We're all so different. I'm realistic, I am, I just I still have some hope. I see my specialist on the 21st of Jan again. I have the mirena and the implanon in now because they have nothing else to give me and my body was over riding the mirena and BCP. New Years Eve I spotted, just for the night, through the mirena and implanon, my bowels were playing up too, not sure if the irritated bowels could have affected things.
I know I am just existing, I never want to do anything for fear of irritating my pain - it's just not living you know. We are saving up, we plan to get married in 2017 and hopefully not long after we can try IVF - if I can and my body can hold out that long. Who knows what it's affecting now.
I had another scare late last year with surgery for a breast tumour, I have next to no boobs so it was a shock to realise I had a tumour in my duct. Thankfully it was benign however severely inflamed, so hopefully I got to it before anything nasty could come of it. I had some post op issues so I am back to my specialist this morning, but it looks like it's healing well now. Just another scar to add to the mix hey?
Sometimes I feel good, sometimes I feel horrible. I feel guilty for feeling horrible because I have a good life outside of my disease. In fact, some would say perfect. I'm just so dictated by my bodies limitations, its frustrating, exhausting. I feel so helpless. I don't talk about it much anymore. I used to be all talk, all information, all awareness. I mean, I am happy to explain anything to anyone. I just feel so defeated. People don't see my behind closed doors...I think as I get older I am struggling more and more with this life sentence. I never knew it would get like this.
Thanks for the vent!
I am now teaching, I love my job, but it is hard with a chronic condition. I go to work come home and rest - I am thankful for the holidays where I get to recoup myself ever so slightly. I had Grade 5 in 2014 and this year I make a leap down to Grade 1 I am excited for the change.
We managed to buy our first home together, in my eyes its perfection. It needs some modifications but overall it's divine and we are so proud.
Christmas eve saw after 5+ years together an engagement! Yes, I am engaged!! :)
As you can see I have had some simply wonderful things to celebrate, and gosh, I am so grateful!
My disease isn't getting better, since my 6th lap in 2013 I refused more surgery, I can feel things getting worse inside me, I can see its affect on my constantly swollen and sore tummy. My specialist who is simply amazing sent me for a second opinion from his colleague, they're both top surgeons and the surgeon he sent me too was recommended to me years ago by Dr. Redwine when I sent him my files. He looked over everything and said I am in a bad spot, it's literally a rock and a hard place. He isn't convinced I can get pregnant or carry a pregnancy. He said even if I try I need to come to terms with that, my disease is "too far" gone and my outcomes look bleak. Well, miracles happen you know, I believe in them because I am one. But it's hard, when doctor after doctor tells you this. I just can't give up. And, I know someone else got pregnant, or someones friends mother's sister had the same thing and got pregnant...I get it, I get those stories. But they're not me, they're not my situation. We're all so different. I'm realistic, I am, I just I still have some hope. I see my specialist on the 21st of Jan again. I have the mirena and the implanon in now because they have nothing else to give me and my body was over riding the mirena and BCP. New Years Eve I spotted, just for the night, through the mirena and implanon, my bowels were playing up too, not sure if the irritated bowels could have affected things.
I know I am just existing, I never want to do anything for fear of irritating my pain - it's just not living you know. We are saving up, we plan to get married in 2017 and hopefully not long after we can try IVF - if I can and my body can hold out that long. Who knows what it's affecting now.
I had another scare late last year with surgery for a breast tumour, I have next to no boobs so it was a shock to realise I had a tumour in my duct. Thankfully it was benign however severely inflamed, so hopefully I got to it before anything nasty could come of it. I had some post op issues so I am back to my specialist this morning, but it looks like it's healing well now. Just another scar to add to the mix hey?
Sometimes I feel good, sometimes I feel horrible. I feel guilty for feeling horrible because I have a good life outside of my disease. In fact, some would say perfect. I'm just so dictated by my bodies limitations, its frustrating, exhausting. I feel so helpless. I don't talk about it much anymore. I used to be all talk, all information, all awareness. I mean, I am happy to explain anything to anyone. I just feel so defeated. People don't see my behind closed doors...I think as I get older I am struggling more and more with this life sentence. I never knew it would get like this.
Thanks for the vent!
Replies
Dear Tate,
Congratulations on completing your first year out teaching. Grade One will be a whole new experience for you but they are lovely. Look after yourself - the little ones can be very draining.
Congratulations on your engagement news - that is lovely - and on buying your house. What an evenful year it has been.
I\'m so glad that your breast tumour was benign. It\'s so stressful when something else rears its head and you\'ve already got so much on your plate.
I do know what you mean re feeling guilty for feeling horrible and for feeling helpless..My disease is not related to yours but I do have all those same feelings and so much pain.
I hope you were able to resolve your post-op problems and I\'m glad your surgery is now healing well.
You and Jason are4 such an inspirational couple. Tatum, you are so strong and so brave and Jason is a wonderfully supporting partner.
Love Pam xxx
You\'ve accomplished some amazing things this past year and I\'m so happy for you! Congratulations!
I see that you\'re feeling a bit down, but I know that you\'re strong and are going to continue this fight. Having surgery after surgery with no relief is exhausting. I totally understand that you don\'t want to have anymore of them, but make sure to listen to your body and trust your instincts. You know that I gave up on surgery for only a few years and almost died as a result. I just don\'t want to see something like that happen to you. This \"merry go round\" is exhausting and I would love to see us both get off of it. I have no doubt that someday we will...but, In the meantime, hold on, and don\'t lose hope.
I believe in miracles too...they happen everyday and if anyone if worthy of being blessed with one...it\'s you!
Big hugs and much love~always, Jen
Thanks so much ladies! xxx