Results...Kinda?

Sorry It's taken me so long to update but I thought It best for me to understand my results first before trying to explain them to you, then I had more hospital appointments for other bits and news on them so It's been a little hectic.

Okay so my results are either one of two things, 1: My Desmoids are to small to show up on a CT (which would be great news) OR 2: They don't show up on scans (not so fun news). So they next step for them is I now have to return to the surgeon who found them when opening me up as he is the only person who can answer this. So the next step is booking in to see him and then returning back to the specialist in a couple of months to tell them what he said. I know what your thinking "Why don't they ask him?" Yeah they did with no response, So it is now down to me to personally find out and get my CT's from him as well.

What did highlight on the CT though was my closed Fallopian Tube is now full of fluid along with the Ovary (Fun Times!) So now have to go get that scanned separately and then see a DR for that, So excited..another Dr, YAY!

I Just met with another Dr (Yes I am collecting them now lol)  last week about the lump in my jaw and they want to biopsy it, they have also asked for a CT and Xray to, no Ultrasound as I already had that done. After all that I will see them next month to discuss surgery! Gosh the fun keeps on coming!

And thennnn lol Just one more! I am off to a plastic Surgeon who will fix my scar from when they found my Desmoids nearly 4 years ago as the top won't heal properly. By this I mean my body keeps telling it it hasn't healed yet so keeps healing so it is growing outwards which gets in the way sometimes and really itches to. It use to weep as well but last year that finally stopped :)

So yeah it's been kind of busy at the moment, and how I feel about it all changes daily but I keep on smiling as it's one of the things in life we have control of, being happy :)

I hope you are all well and pain free <3

The countdown

Okay so next Monday I get my results, find out where these are an how big they are and although I'm feeling positive and thinking of all the best options I am nervous. I keep thinking being nervous when you don't think the results are going to be bad is wrong, like I shouldn't feel this way. But tonight I learnt it's okay. Nerves are a natural human reaction to the unknown, or in some cases the known. You could have long hair and about to get a long bob and you feel nervous! Perfectly okay. About to go on a date and your nervous, also okay! There is no rule book for nerves, they just show up when they want to. How we handle them though is a different matter. I for one become short tempered and emotional so the second I feel the nerves feeling creeping in I am straight to my husband to let him know, not so he can give me sympathy!! No I don't want none of that, just so he knows his silly moments that would normally make me laugh, probably not the best time for them. Basically treat me like it's "That Time" again lol All us women get "That Time" and I tell him so my nerves don't cause us any problem. I usually tuck myself away with a film and a cheeky drink and let it ride over me, Then the moments that doesn't work I know I have my amazing husband and family who are there to listen or just for cuddles. So just remember, any emotion you are feeling, it's okay! Some may not understand it and that's okay to, we are all different. One thing I've learnt is... It's Okay To Be Different :)

I hope you are all well and pain free <3

It's been a long two weeks!

Gosh where to start! It's been a very long and not so fun two weeks. It all started with a migraine that came on towards the end of my shift at work. Now for those who know me I extremely rarely get a headache, like I think 6 maybe, one of which was a migraine, well this was my second. I came home and did the usually in the dark in bed ritual, all the good stuff and when I woke I was a little unwell with my tummy and really thirsty. Thinking nothing of it I just continued the day in my pj's and mostly sleeping feeling worse and more thirsty every time I woke, then the pain crept in, In my kidneys, abdomen and ribs. I had that weekend off so thought I would just rest and all would be right by Monday but I was wrong. Every daily thing I did would make me need to sleep, Getting dressed, Showering, making lunch, I would need to rest or sleep after. Every waking moment I had a drink in my hands no matter what I was thirsty all the time. I thought It must be a virus and would go in a few days. Sunday afternoon came and knowing I had work the next day knew I needed to push myself and do some housework to show myself I could go to work the next day, bad mistake! I figured the hoovering needed doing so lets do that, just a few movements and I was a little breathless...pff that's not going to stop me! So I moved onto the stairs, by the 3rd step I knew I should stop but stubborn as I am refused, by the 5th could barely hold myself up let alone hold onto the hoover itself so had to shout for my husband to help, Felt a little useless at the moment If I'm honest. After being "rescued" I laid on the stairs for a while catching my breath until I had enough strength to move up the stairs to bed and realised now was the time to see a Dr, something obviously wasn't right. In the morning I made an emergency appointment and by 11:20 was in seeing a Dr. He was just as puzzled as me, I didn't have an infection or a temperature. Hadn't had a fever at all, not diabetic and my skin test said I wasn't dehydrated so we was lost where to look next.He then suggested I call my specialist and ask her and if she said it was nothing to do with my Desmoid's to return and he would decide where to go next. I left the office feeling very frustrated as this response is so common for me now. My trip to the office had worn me so had a little rest and decided even though when the Dr's say to ring my consultant and I ignore them and everything fixes itself, this time I didn't feel right and decided to call my specialist nurse instead. She wasn't in but had gotten back to me the next day. I told her about the pain, sleeping and constant thirst and after a few questions she told me about things Desmoids can do to you body, this was one. She sent me a recipe for an the most vial tasting drink EVER! Even recommended I drink it through a straw to bypass the tastebuds as much as possible lol It was to rehydrate my body. A few days later and I was finally fully awake!! was a great feeling. The pain has now dampened accept for the odd dig here and there but that's common for me now. Finally today after soooo many days off I returned to work, you wouldn't believe how happy I was to be there!! Never thought I would be saying that! lol So if you was wondering why my blog and page has been so quietly lately this is why. I hope you are all well and pain free <3

Pain Management (this may get a little personal FYI )

So as I wrote in a previous post I have now received pain management finally! I'm still on tablets that can be brought over the counter which as per the others I had do nothing for the pain. I'm refusing to go to the next level but have had a few days recently where the pain has almost had me screaming and I've nearly given in. Everyone says if I need them then just take them  and to stop being brave! But I don't think people understand what that comes with. I wouldn't be able to drive on them, so couldn't get to work! and they make me sleep. I can't handle the thought of letting it overcome me! So I push through and feel better for it when it all goes away and feel I have defeated it for the day!! Puffing my chest out and strutting "Ha you won't defeat me!" These things already took some things from me, I can no longer wear normal bra's. When I sit one tumour sits on the other and putting a wire on top one of them is so uncomfortable there's no words. Trust me wearing sports bra's is not sexy and you do not feel womanly! So I will not let it take work or going out from me to!

I would be very interested if anyone has found any other ways to help with the pain. Tried hots baths etc, A hot wheat bag takes the edge off a little so will be investing in a new one of those as I have burnt the wheat in this one now! oppps

Please comment below if you know of other ways or feel free to messege me on my Facebook page

Desmoids Suck, Let's Help Find A Cure

Pain Stricken!

I was writing a post about my upcoming appointment until I just had the WORST past ten minutes in along time!

It was like a massive spasm at the bottom on my ribs, feeling like my ribs and stomach were twisting. My breath taken from me and the pain, oh I can't describe!!! It scared the life out of me and I just wished it would end.  And it did but something wasn't right and I touched where the pain had been and dully still was, the Desmoids on my ribs were now pushed up, so much so my husband could finally see and feel what I was talking about! I've always been able to feel them I guess because I know my body better so knew what it felt like before I had them. Is it weird knowing he now has felt them to is reassuring? Like what I've been saying is real? does that make sense?

So I'm sat here with them still up as the pain is finally passing, a little tearful and still a little breathless wondering what on earth just happened. More so than ever looking forward to my appointment at the hospital and most definitely looking forward to my first MRI to see what these little suckers have been up to.

But I am also lucky as soon as I could move I spoke to my friend who has some in one of the same areas as me and straight away she knew what I had gone through and was reassuring. Desmoid buddies are a great thing to have and I hope you all have yours as I am truly thankful to have found mine. Thank you hunni  <3