So this week is Fertility Week, the week where people get to talk about whether they are or they aren't fertile and not sound like a broken record. There is a real stigma attached to infertility that annoys fertile people, once you have talked about it, shouldn't you stop going on about it? They don't go on about the fact that they cant stop having babies... why should you talk non-stop about not being able to have them? The fact is, we 'infertile' live it every day, think about it every day, dream about it every day. Reminded by pregnant bellies, cute facebook announcements, magazine articles, TV shows, movies, books, store sales... the list goes on. You fertile lot have babies cause its no big deal and move on with your life, progress, grow, accomplish and not that you notice it, moan, lots about how hard it is to parent, how you never get a break, you become quite ungrateful at times because no-one understands how hard it is. Imagine how hard it must be for us?
Anyway... so how do you make the decision to give up? make the final call? tell people you aren't rather than can't? Speak about it openly without the disappointment, pity or making people feel awkward. Ultimately the choice has been made for us but there is a still hope, still that chance, especially when we see donors, surrogates, adoptions, happy endings for some, just not for us?
Is it wrong we are coming to grips with it? sometimes enjoying the fact? booking holidays on a whim, not having to worry about school holidays, spending money on the house, relaxing in the quiet, feeling relieved our children wont have to live through and see the terrors of the world?
Then I hug my nephews, or hold a newborn, or remember I'm not going to be a grandmother, or give my parents grand-kids and the anxiety of giving up, where the money will come from if we try again, the potential losses and my parents sadness, it all creeps back in. Will we, wont we? it seems like a revolving door. So, what if I put it out to the world, can I then take it back?
Decisions need to be made soon, maybe 2018 will be the year that makes us or breaks us.
Wow no post since March! what have I been doing? what a year it has been. I have missed blogging as it gives me an opportunity to speak about things I don't normally stop to chat to those around me about. To record them to look back on. Its all part of my journey.
These past few months have been really tough. My father still struggles but is doing better, my brother had a life-changing move, My mother-in-law can't sell her house, my sister separated from her husband in a rough domestic situation which has been really hard on her and my nephews, my ex-brother in law is the true meaning of the world arse-hole and needs to do a better job as a father, my great-nieces have had a trying time also with similar situation with their parents. Its been rough to sit back and see a total disregard for a child's mental health for a parents own immature and selfish needs or wants. I'm still a bit bitter and twisted about it really. Is it because I think they should be grateful for the gift of parenthood, oh for sure! That's the hardest part.
We decided to push forward with our renovations before looking at another cycle and they have gone on for way to long and gone totally over budget so our idea of another cycle this year was put on the back-burner. We are hoping for next year but just when it starts to rain it ends up a torrential downpour. Between work, home, my DH's final papers of his degree I think we have enough on our plate, so we are taking it day-by-day.
Then...I met some ladies online... and they really have been my life-line. Its an international community of those who are childless 'not by choice'. I'm not going to go too much into it to protect their privacy but its a place I feel I can truly talk about how i'm feeling, and not be judged for being dark and twisty, they fully understand and on occasion my positive outlook, which is most of the time, in turn has helped them when having a bad day. The 'mothers to be' group I am a part of is sometimes too hard as there has been a lot of BFPs lately and pics of their new babies. Truly happy for them but still...
So, does that mean im now sitting on the fence? One more ICSI cycle is what my husband and I had promised each other, but it just seems so out of reach now? have I moved on, am I content with our childless status, or have I given up? I can't really figure it out, all I know is that i'm actually fine, apart from being stressed out of my brain about all that's going on around me, I seem to still be doing fine.
We have another month or so to endure of moving out for remainder of our reno's, its a nice wee place to stay, im going to take the opportunity to meditate, read, colour, write/blog more and really do some soul-searching with DH and make some plans together for the year ahead. What good is a life you're not living?
Best thing that has happened to me thus far was being referred to my Pelvic Heath physio, I wish my bowel specialist had thought of that sooner! what a weight off my shoulders. After spending most of the appointment listing all my ailments we finally got to the assessment I had been sent to her for and brilliant news! yes I have a short pelvic floor but given my history, that is better than a long one and is much much better than what it appeared on my Functional MRI. No need at this stage for surgery or really even physiotherapy as meds and monitoring of diet should reduce risk of further complications and we even did a Bladder diary to rule out any systemic issues and that also came back really positive news, my bladder issues definitely stem from my bowel issues and if stay healthy I should have minimal issues going forward. She wasn't impressed with the outcome of my MRI as my second appointment with her was after my follow up appointment with surgeon and she still is concerned my nerve pain hasnt been addressed and may be contributing to other abdominal pain her and I have been discussing, she was nice enough to refer me to someone she works with that she believes could benefit me in some way with a plan for my Spondylosisthesis and getting more cardio/movement and reduce my pain and fatigue. Yay, a win!
So ultimately this is where I feel like I should be now, at the point where surgery at this stage is not yet necessary on my bowel, pelvis, uterus or my spine, money well spent on specialists I think and is all good news really!
I had my first appointment with my new physio this week, yes I now have two. Luckily they know each other well and are working together. She did look a little overwhelmed when she saw the size of my file and the notes my Pelvic Health physio sent over in preparation for my appointment.
So, not going to bore you with the entire appointment as I do have the tendency to ramble (ask anyone in my family, esp my DH), long story short the new physio wasnt impressed that the spinal surgeon only wants to see me back again if I decompensate "In medicine, decompensation is the functional deterioration of a previously working structure or system. Decompensation may occur due to fatigue, stress, illness, or old age. When a system is "compensated", it is able to function despite stressors or defects". In other words when i physically and mentally cant cope anymore. That means I have to find the best way to cope even better than I am now and the hopes are I can stay that way for many many years to come. I dont actually want surgery ever, its risky business!
My first physio appointment was trying to get everyone out and noted on what has led me to this point, still we are able to determine what is causing, or has caused my sciatica, physio commented that MRI's dont show nerve damage only nerve compression and even then not always detected so she has slight concern that I still could have compression, irritation or even a torn/damaged nerve somewhere. Potentially I could have damage further up in thoracic or even cervical spine as nerves are continuous from top to toe and the pain im experiencing is from extra strain on a already 'bothered' nerve so where ive been pushing on, maybe I should just take it easy. She gave me stretches to do only on my left side for now to gradually work on it, and work to do on my posture when sitting down for work each day, it has been challenging today but can see the benefits of being more 'aware' already. Just need to work on my posture at home now, as I type im cross-legged and slumped back on the desperately ergonomically lacking couch own, time to get my dream lazy-boy suite I think! Im going back in 2 weeks time to see her to do a bit more work on creating a long term plan for me as I am really in the chronic category when it comes to pain, i never have a pain level of 0... so not necessary for me to be in there every week as we are not going to find a magical fix. After that if Im doing ok and not worse we are looking to book me onto an 8 week program of physio targeting my core strength, then if successful I can start some proper exercise like getting back into Yoga, potentially doing some proper cardio, in the meantime my personal goal is for me to be out walking for at least 30 mins every two days.. does shopping count? haha.
I really feel lucky that I cope well...im part of a few social network groups and see people battling everyday...and that I have a great quality of life despite what is going on, it could be so much worse, never take the ability to 'get up and go' for granted. Truly grateful and hope it stays that way going forward.
So today was Spine Surgeon MRI review day. Even though I had requested my own MRI results (ill list them below) and was some-what prepared for the appointment, I was still feeling nervous about what the outcome would be, wasn't expecting what actually happened though!
I knocked off work a little earlier than the appointment, for those that know me, I like to be early to my appointments and avoid rush and car park drama. His offices were just down road from work and they have a car-park at bottom of the building, such a nice change not having to pay for parking. The small joys.
Right, lets start with the 'Good News' first... my L5/S1 disc looks good! apparently... compared to how it could look. The findings from MRI were are apparently 'typical' of those of someone with my condition and in my age group. Also he believes the same for the L1 vertical herniation, "I see it a lot" he said. No surgery required 'at this stage'.
Now for the 'Bad News', if you can even call it that. As there is definite narrowing in the foramen (bony hollow archway created by pedicles of adjacent vertebrae, creating a passage-way through which all spinal nerve roots run) some nerves might be 'irritated' however not trapped as such, so no way of actually telling what is causing my Sciatic pain. My treatment plan apparently is mine to sort out, no referral to a specialist physio, no prescription or even suggestion about medication, just good luck, increase your cardiovascular exercise and it 'should' but might not get better, come back and see me if it gets worse though, final outcome once it gets bad enough will be to fuse my L5/S1 together to avoid any more pressure on the disc once it degenerates completely over time. I will be booking an appointment with my GP in meantime to talk over what the affects of long-term use of Paracetamol or any meds for that matter will be on my Solitary Kidney, Paracetamol doesn't do the whole trick but it helps a little, I refused the Codeine and Tramadol previously, that just leave Gabapentin and other nerve blockers and he said intellectually they are not going to help me when it comes to working 8 hour days. I'm not prepared to commit to any long term use of them without regular checks on my kidney function as I would rather suffer some with the pain in the meantime till I really need them.
There you have it. Most of the above I had already found out via google so I find it quite comical really. My father and I knew it would be the outcome anyway as most specialist surgeons wait for a pain scale of 10 before taking any action.
So it continues... I will talk it over with my Pelvic Health Physio at the end of this month but in the meantime I'll try looking into Spine Physio that I have been recommended by a friend from work, maybe get back in touch with the Osteo I was seeing previously, see what she says, willing to try anything at this stage... including exercise, as comfortable as that is going to be maybe that is what I've been lacking lately.
Reminder to self, choose joy, count blessings.
I feel like I haven't posted in ages and this will be one of those posts that I will edit about 100 times as I forget where I left off and have so much to write about.
I think my last post I talked about the discovery via a Lumbar Xray of my Spondylolysis and Spondylosisthesis. Well.. lots of reading has been done since then you can just imagine! Dr Google been at it again. End of November 2016 I finally saw the Spinal Surgeon who agreed you don't have pain for no reason, everyone deserves a diagnosis before treatment is given. That is the first time I feel like I have been taken seriously, he didn't just talk, he listened, then referred me for my Lumber MRI. FINALLY! it was right on Xmas so I didn't go in straight away and it was nice to just have a break from appts actually over that time, got stuck into some spring cleaning and time with hubby for a week off work then headed in for MRI my first week back to the 'real world'.
I was a breeze this time, being my 3rd one it was actually quite relaxing! they gave me a blanket even, it was an 8am scan and before my morning coffee so nearly nodded off again. I was asked at the end of it if I would be seeing someone about the results and I said a month away, I then started to feel a bit nervous about why she was asking. Thoughts in back of head for past few weeks were hope there is nothing growing in there that shouldn't be as the pain seems to be getting worse not better... paracetamol x4 daily is helping (when i take it) but knowing its not good for my kidney I only take it when I feel like I really need it. Stupid I know but im pretty good with pain. Sciatic pain is not fun however and I really feel for those that suffer badly with it.
Now, you probably know me well enough now to know I wasn't going to sit around waiting for those results so I emailed the GP's office about a week or so later and asked for the results to be sent through. Hmm not sure that was a good idea! Not only do I have a misalignment of vertebra, its noted that I also have one bulging and vertically herniated disc at L1 and also a bulging disc and annular tear possibly at L5/S1. Not sure at this stage what that means for me as both a mild, but could explain a lot, seems no nerves are looking compressed but the disc nerves may be the issue? Yup, again if I was going to do it, I will do it properly! I now have to only wait one more week to see the Surgeon and see what he has to say. At this stage surgery not likely I don't think but looking forward to some kind of plan, physio, brace, meds (just no NSAIDS) you name it ill try it once! So will have more information and stop make my own diagnosis. I had picked up on the report that my kidney was Atrophied which isn't good, it means that parts of my only kidney were starting to die away.. so I emailed the nurse and asked for that to be queried with my GP, surely that isnt good and why did we not know about that already? Turns out the Radiologist has misinterpreted the clinical coding and that was actually meant to say Hypertrophied.. we already knew that so was a sigh of relief there thats for sure. Always read your results and always be your own advocate!
Today I also went to see a Pelvic Floor Physio, referred to by my bowel surgeon. That was a great appointment! We spent an hour just making notes on the file and having a quick exam and the good news is its better than we thought! No surgery needed at this stage there either, my pelvic floor is short (which isn't normal) but consistent with my long history of IBS and Bladder problems, there are a few muscular issues that need to be worked out and a Bladder Diary to be done but other than that I think the appointment went great, I did get the 'omg you really are a interesting case' look... but Im well used to that now. Looking forward to seeing her again at end of this month, we want to wait and see what the outcomes are from the Spinal Surgeon appt, as my 'anatomy' is my number one contributor to a lot of these issues.
Still finding the silver lining and dancing in the rain, will update again soon.
