Laparoscopy update

My laparoscopy went well - the consultant told me he didn't expect to find much as my scan last summer showed nothing to be worried about. So he was hugely surprised to find stage 3 endo which had stuck my right ovary to my abdominal wall, my uterus to my rectum and other spots around the ureter and utero-sacral ligaments. Just goes to show how little scans can show and how random endometriosis can be.

I was incredibly sick after the op and had to be kept in over night and given 3 huge bags of fluids as I just could not keep anything down but have managed to eat both breakfast and lunch today. I have a ridiculously sore throat and a nasty piece of skin or something hanging down from that little hangy down bit at the back of your throat which is annoying the hell out of me but every attempt to remove it just makes me retch and there is no way I am losing yet another meal that way - I need my nutrients so I'm having to deal with the annoyingness of it.

Pain wise I feel better than I have in months, aside from the gas pains - oh the gas pains I'd forgotten just how painful they can be plus I'm sore from throwing up. They think I threw up more this time because they flushed extra gas through my system to check they had made no holes in my bowel clearing the adhesions. I've been told to stay off work until at least nest Wednesday so that is what I plan to do.

I might go have another nap now. Be back with some normal blogging soon.

UPDATE: The thing at the back of my throat is pus (eeeewww tmi?) as I have an infected uvula from the tube they stick down your throat during the op. I got antibiotics yesterday but feel like crap - headache, throat so sore my whole mouth including my jaws and teeth hurt so bad I can hardly bear to eat just the minimum to keep taking painkillers and antibiotics, and general sicky feeling. 

The gas pains however are much better - I managed to even get in the bath for a quick soak today (with T's assistance to get back out again - there was no way I could do that myself). All in all I'm glad I told my work I'd be extending my leave from Monday to Thursday - gives the antibiotics more chance to kick in. 

Think of me?

I have my lap on Wednesday. I'm really hoping that this will be the turning point of this long run of ill health I've had and I'll be able to get back to blogging about nice, happy things instead of moaning all the time - I hate moaning, talking about happy things is far more fun... and leaves room for posting pretty pictures too!

So, I had my pre-op assessment on Tuesday which went well. Prior to the appointment I was terrified of this op because my last one was less than pleasant. Having spoken to the nurse however I now realise that my experience was not just bad because of the complications and the terrible nausea following it, but the way the whole thing was handled was incorrect... "breach of confidentiality" actually came into the conversation - so although it could have been a hell of a lot worse, it was actually pretty bad and I was expecting the same thing to happen again. But now I feel far more confident - I am nervous still, of course, but I'm ok with it now.

I'll be treated in the new treatment centre in one of the largest hospitals in the UK - you can't really worry that much when you're in such good hands, can you? Plus T has been telling me all about it, seen as though he works at the hospital and knows some things about how wards work etc. In fact having someone look after me who looks after people post-op regularly is ideal - he'll be prepared for the nausea (unless they manage to get the anaesthetic right for me this time and avoid the nausea - here's hoping) and the tears - why do people cry after it, I never understood that!

Anyway, I am nervous but looking forward to it being over - I hope they find something they can deal with because that would really be the ideal - if they find it and can treat it then great... of course I hope they don't find too much... so if you're a praying, sending good thoughts, or energy healing kind of person then please think of me this coming Wednesday... I'd really appreciate it!

Edit: I forgot to say - my BMI was perfect and my blood pressure "textbook" according to the nurse on Tuesday - I am over the moon!! I don't think I have ever been like that - underweight, yes, slightly overweight, yes, high blood pressure, yes... let's hope this bodes well!!

Update, Birthday and Time off

Ok I have the shortest time before getting ready for work so apologies for the bullets!

• I haven't been around much because I have felt the need to cut back my online time. I just haven't got the time or energy to do everything I want to and can't sit looking at a screen for as long as I used to. I have streamlined my bloglines feed to keep my endo friends and the baby blogs so that I can keep up with those who have things going on in their lives I don't want to miss - but the others I am not reading for the time being. I also won't be blogging myself as much - I can't cut myself off entirely but I need to cut back.
• It was my birthday on Tuesday and I had a wonderful day in the garden - how blissful. T also bought me the soundtrack to Sister Act which has been playing constantly - do you know how this is the best present ever for me?! Well it is.
• I saw occupational health on Wednesday which was um interesting. The nurse was concerned by how much I travel and work when I obviously cannot cope with it all whilst suffering with the endo and IBS. She wants me to cut down my hours or be redeployed to another area "short-term" until I get things under control healthwise - I can see why and in one way this is good but in another I don't want to lose my job because of it. She also wants me to see my GP and get a referral to both a nutritionalist and a pain management clinic as well as take up yoga again all to help me cope with what I do have because quite frankly I now have to accept this is a chronic condition. Damn.
• Hence I got all upset and upset T that night by going over the fact that we may not ever be able to have children because a) I might not be able to fall pregnant, b) if I could I don't know if my body could cope with pregnancy as it doesn't cope with hormonal changes well and I would hate to have to make that decision or c) we just may not be able to afford it if I can't work due to health when I earn more than he does. Double damn.
• I have my pre-op next week and then my lap on the 13th - let's hope they find something they can deal with to help make me feel better because I feel CRAP right now. I've had cramps since the weekend and the past 3 days I've had pain around my left ovary and shooting pains from there around my hip and down my leg - what's with that?? I've never had that before!! It hurts like hell though and now I feel sick as anything with trying to work - if I didn't have a meeting with my manager about improving the disabled guide for tourists which I have waited for weeks for I would call in sick today.
• On the up side of things though I spoke to a friend on the phone I haven't seen since graduating and it was just like old times - so happy - and I am going to add skype this weekend to catch up with another friend and finally get round to calling others seen as though I have a 3 day weekend coming up - yay!!

Got to go to work now - hopefully be back in the not too distant future!

Updates for Easter

I haven't got much time to blog at the moment so I thought I'd just leave a few quick pointers:

• My Grandma is coming to stay with us this weekend - I am SO excited I cannot tell you. I love my Grandma, she is like a part of my soul because she knows what is in my heart so well, be it something serious, something spiritual or something utterl ridiculous that we just have to giggle about. I am very much like my Grandma and that makes me happy because she is an amazing lady and I hope to be as amazing as she is when I am older!
• Tomorrow is my last day before Easter - I will then have worked 7 days in a row. I am so ready for the rest because I have spent most of those 7 days in pain so I am doubly tired. At least tomorrow and Monday are short days (11 - 3) because of it being Easter.
• I am spending a few nights at my aunt's next week. She lives in Cambridge itself and it was by staying at her house during the university holidays that I came to fall in love with the city. I loved spending time with her and miss those days so I am completely over the moon about spending a few days with her next week (T is on night shifts so I wouldn't see him anyway and by staying with her I also get the added benefit of being so much closer to work my days will be much shorter!)
• I have had a pain in my lower back (around the left ovary area) which feels like a combination between a bruise and somebody pulling your hair. I used to get this bruised feeling a day before my period but now I don't have periods and it is just sticking around and annoying me - it hurts to walk (esp up stairs because it pulls) and it hurts to sit down (like someone has thumped me with an iron rod or something). It's not been as bad the last couple of days but I've started having headaches, feeling sick and today could hardly stomach my lunch. It is of course full moon time again and I am always worse around the full moon - even without bleeding my body still keeps to its cycle it seems... maybe I'm a werewolf in disguise, what do you think?
• Work is getting really busy and I love it - I like being busy it makes the days go quicker. And now that we have two Italian girls and a Belgian girl working there plus someone from Germany and someone from Austria working in other parts of the office it is a linguist's dream!!

That's all I can think of right now, I'm too tired to think much so I'm going to go read in bed I think whilst I wait for T to arrive home from work. Have a wonderful Easter xx

Sacred Life Sunday - The Beauty of Sharing

Until very recently I held my faith very deep inside of me - I never wanted to speak of it. Actually that isn't true - when I was a child and teenager I had no qualms about talking about what I believed if asked but I never really volunteered information. And then after an experience whereby a certain "way of having faith" was forcibly thrown upon me I vowed never, ever to do the same to others. But I found that I couldn't talk about my faith at all really then, not openly with others of different beliefs. So I spent my time caught in my own little world, speaking so passionately with those I knew shared my way of thinking but never once opening up to others, despite their friendliness and compassion.

For those of you who have followed this blog for a while or those who know me you may already know that for a long time I have been feeling torn - a part of me continues to feel the pulling force of Christianity whilst another part of me is firmly rooted in the more liberal, new age communities. Because of this I even began to shut down the more spiritual side of myself I had previously been so strongly connected to - Angels, Reiki, Meditation and Spirit Guides. It was like I could only be one or the other person - a Christian who shunned the new age (which I couldn't do) or a new age person who shunned Christianity (not as hard as the first one but just as painful). Deep down I felt the need to make peace with them both, but try as I might I just kept getting lost in a circle of confusion.

Recently, however, I turned back to the Bible with an open heart and an open mind and suddenly it all made sense. I no longer felt anger or bitterness (ok I felt anger at some of the things certain people wrote about the new age in relation to the Bible - but I had no hard feelings when reading the Bible itself). It was like the dawning of a new day - bright and glorious, full of hope after the darkness of the night before. I felt happy and threw myself into both prayer and reading (you wouldn't believe the amount of books I have procured and read these past couple of months). But you know what was even greater than that? It was the ability to SHARE my faith with others - to say "God is great" and know that I didn't have to hide a part of myself in doing so! Because finally I felt comfortable saying to people "I'm not sure where I fit into all of this but I want to share with you this wonderful gift - I want to hear what YOU feel and I want to share with you what I feel" - how wonderful it felt to be able to look at it in that way.

And in doing so something even more incredibly occurred - I found that all this time I had a wrong impression of Christianity based purely on a select few people who had such strong convictions that I just couldn't agree with because I felt sure God wasn't telling me such things in my own heart. And I found that many of my Christian friends had very similar beliefs to me - in fact for every moment I was able to say "I don't feel comfortable with the idea of Jesus being the ONLY way to God", for example, they were equally able to say "I don't feel comfortable with the idea of hell and suffering"... and they were able to share with me what they felt the Bible taught about Jesus and I was able to share with them how my own interpretation helped me to make peace with suffering and the idea of hell. The more we spoke and the more I read the clearer it became to me that the few people I had spoken to in earlier years who had put me off Christianity completely due to their "holier than thou" and "we know the answers" attitude were so tiny in their minority - far more people have doubts that in fact strengthen their faith (for me having doubts means your ability to trust in something you do not know the answers to is made stronger - I hope that makes sense!)

I'm continuing to chat and read about these things and discovering a world I never knew - a world where there needn't be boundaries and I can be open in both my own sharing and the sharing of others in what we believe and how we feel God. That to me is a great blessing and has made me so much more open to building a relationship with God as well - so today I am celebrating the beauty that is found in sharing. When questions are asked, I will endeavour not to shy away in fear, for then my faith is weak, but to truly hear what is being asked, pray/meditate on the subject and accept that certain things may change - for faith is such a fluid thing - the basic tenets may never change, but our understanding of its finer details can easily grow as we experience more and more each day.

And in that light I am opening this post up to any questions/discussions anyone fancies having (either through the comments or email dreamslastforever{at}hotmail{dot}com regarding faith of any kind, be it Christian, new age or something else (though please do bear in mind if it is something else you may have to explain the basics to me because I only know these two paths). I promise not to force any of my opinions on you - I am in this to learn, not to argue!

Have a wonderful weekend
Amanda x

Onto a happier note...

My posts of late have been rather dreary, which in a way is why I love blogging so much - it helps me look back and see how I was feeling at certain points and note the patterns of thought and behaviour I go through. How else would I remember exactly how much I have been obsessing over health issues, when so often our memory is inaccurate? I mean I often remember hard times as easier, happier and forget just how happy the happy times were - it's like I remember the essence of a feeling (I know I was happy/sad etc) but I do not remember the level of that emotion - it's good to see that, and as I was never any good at keeping a diary blogging helps me to come close to keeping one.

And so, looking back over my previous posts, I realise that my worry, though legitimate, has been a bit obsessive. I can't change what is happening and worrying about it isn't doing me any good except making me feel even worse. So, with that in mind, I am going to use this next blog post to list some of the ways in which I am blessed and remember some of those people and situations I have had in my thoughts and wish to pray for - doesn't tha sound like a much better blog post? It certainly sounds like a much better inner dialogue for me to be having anyway!

Blessings

• I have a wonderful boyfriend who loves me with all his heart, cares for me deeply, laughs at my silliness and consoles me in my darkest times. He cooks, he cleans, he gets up early to ake my breakfast... all this and more to try and make my life easier for me during tough times. And more than that - he understands me. He understands my need to sometimes obsess over things just so that I can figure out for myself what it all means for me. He even takes me places he may not want to go originally but does because he loves me - and because he understands me on such a deep level he often finds he enjoys it himself in the end - how amazing it that?
• I had a beautiful childhood, no matter how many times I complain about this or that (which really isn't that often to be fair). I was loved, guided, protected and yet allowed to make my own way in the world when I was ready. If it weren't for this great start in life I wouldn't be the person I am today, and although it may sounds strange I am proud of the person I have become (which is a BIG thing for me to say because I find being proud of myself very difficult).
• I have amazing friends who, although not always close in distance, always remain close to y heart. Friendship is everything we could possibly ask for as far as I am concerned - T and I wouldn't make half as good a couple were it not for friendship!
• I have a job - that pays pretty well even at the lowest end of the pay scale and includes a good pension scheme and repayments of my student loan. In times like this when so many are out of work I am so thankful both T and I work - despite my anger sometimes at never having any money left by the end of the month and never being able to buy things just because we might want a treat, I am thankful we have jobs and a home.
• We have a beautiful hoe to return to each day - no matter the distance and inconvenience of commuting - in fact the commute has brought me time in the day to read, meditate and pray - things I never did on a daily basis before.

Prayers

• I am keeping all my friends and family in my prayers, especially those who are facing life threatening illnesses within their own families.
• I am praying for those I have met through blogging who are struggling so with their health, particularly endo-wise right now.
• I am thinking of a colleague who is struggling with mobility issues right now - the pain it is causing her both physically and emotionally as she learns to readjust from being terribly active to unable to do anything.
• I am asking to see the way forward with my own understanding of my beliefs - of God, Spirituality, life, death, reason and purpose... I am trying to be open to new ideas (and old), and to those sent to help me work this out at this stage in my journey

That will do for now - a much needed post I feel. I must run now otherwise I'll miss my bus. Hope you all have a lovely week. xx

22 and a half days

Thought I'd better update you all on the work situation.

I had an "informal meeting" with my manager as advised by HR to inform me that I won't be hearing from occupational health until after April 1st as we are changing the company who do all that stuff. So that means I have to wait longer to find out what they are going to say. I did find out during this meeting that I have had 22 and a half days off since starting at the end of August last year - which is a lot. I understand that. I also understand that they are concerned because they have not all been for the same thing - even though I have told them they only reason I get so ill so easily is because I am so exhausted from dealing with the symptoms of the endo. Anyway I'm currently trying to use my time to find articles I can take with me to back up my case.

One of the things that has been bothering me is the fact that I remember saying in my interview that my health was fine. It was - I'd just suffered the bout of labyrinthitis and I told them about that but it was the first time I had really struggled with my health since leaving uni in 2006. I had had 2 years symptom free of the endo and although the pain was creeping back in it was manageable and I had not had to take any time off for it - plus I had previously had a scan and all seemed well so why would I worry about it? Aside from the odd stomach bug (which everyone gets especialy when working in nurseries with loads of babies) I had not taken any time off work. But seen as though I've only been there since end of August and my endo has become a continuous nightmare since they tried the Zoladex injections in October it doesn't look good - almost like I lied about my health...

And this thought plagued me all week until I remembered that I had to fill in a health questionnaire before being approved for my job - even though I'd passed the interview I couldn't be accepted until I passed the health check. I wrote down three things on that form - hypermobility of joints, labyrinthitis, and endometriosis. I even spoke to a lady on the phone who was concerned about how standing up for long hours would affect my joints and how the inner ear damage could affect my ability to work - neither of which have been a problem once. And yet she never once mentioned the endo - it didn't even seem to cross her mind that it would be a problem. So if someone from a health screening company didn't think it necessary to bring it up, why would I?

I've spoken to a few people who have put my mind at ease a bit more this week - my dad has told me he gets things from HR about staff under his management and it is a requirement for the company to make sure it is nothing work related that is causing the ill health, and my aunt has told me she was called in my occupational health when she started getting migraines and despite fearing she'd lose her job over it, it all turned out fine. I just wish I'd been working there a little bit longer before all this happened so that I didn't have to worry that people thought I was just lazy and/or weak.

This is, of course, my biggest concern. I know there is nothing I can do, not really, to change what happens with HR and occupational health. I can be informed, sure, and I can make sure they don't try and make me feel bad or pin blame on me, but at the end of the day a policy is a policy and if that means I have to go see them then I have to go see them and there is no point in stressing myself out over it because that just makes me even worse. But there has to be something I can do to ensure those around me do not start to resent me for the extra pressure put upon them. Both my manager and supervisor this week have brought it up with me that my ill health does put pressure on others because I was brought in to ease the pressure they suffered last summer which I have heard was horrendous. Time and again whenever I have mentioned getting tired easily it has been said that I need to build my energy up for the summer (and concern has been shown in their eyes not for how I feel now but for how it may affect the summer months). And although I understand this completely, I also wish it wasn't the case - and again I feel that had I been there longer and shown the resilience and energy levels I used to have just a year ago even, then there might be a bit more compassion.

That being said my manager did try to reassure me that if she didn't care she wouldn't bother sending me to occupation health but would have refused to sign off my probationary period, which she did after the intitial 6 month period despite my long absences. Of course, I am only just over those 6 months and if they take into account how many days I have been off sick I don't now if they are allowed to revoke it, does anyone know? I cannot shake the feeling that I am on very unsteady ground - not because I think they can sack me or anything but because if the summer is as busy as we are expecting and my health does not improve I don't know how much longer my body will keep going - I do not know how to work at a lower level as I have high standards and feel even more under pressure to prove my ability when I do manage to work. And let's be fair, I work in a job where there isn't really much chance of changing my role - I am needed to be there, in the office, on the front counter, every day - no part-time, flexi hours or home working to take the pressure off until my health is better (as the endo leaflet I read suggested) it just wouldn't work for a public information post.

*sigh* - I hate the fact that something like this can happen - I never really realised how much endo can affect your life. Before my diagnosis I was a student and so things were more flexible - I could work from home so long as I made my deadlines. Going out to work and keeping up with the rent and other responsibilities (especially after having T out of work for so many months last year and paying off debts from that) add so much more pressure. I also never realised the different effects it has - before it was the nausea and pain alone - now it is the fatigue and general ill health that gets me, the pain, though bad, is nowhere near what it was before and yet I think now my endo affects me more than it ever did previously. And what is worse is that it is such a silent illness - to everyone else you look healthy, especially if you're like me and cannot show vulnerability and just carry on as if nothing is wrong despite being in agony. And it is such an unknown that even though many people respond with "oh I know someone with endo, it can be so painful can't it?!" they never realise how many other ways it can affect someone - and how could they, I mean I never realised even though I had it myself.

Next week we start the 7 day opening hours in our office, which means that as a full time member of staff I will have to be in the office for 4 full days and 2 half days (that's 6 out of the 7) twice a month. We're hoping to change that to one week of 6 full days and one week of 4 full days but even so it does make it much harder than the winter months of 5 working days. I'm gonna need all the strength I can get - which is why today we did nothing but lay in bed the whole morning and then watch the extended version of The Fellowship of the Ring. And for once I didn't feel like I should be doing more.