Welcome to my new blog! YAY, I’ve cannot tell you how long I’ve waited for this to happen, I’ve always wanted to go self-hosted and I’ve finally made it happen. I’m so happy with how my new blog looks and I cannot wait to create lots of new content for you all to read/enjoy.
It’s been a long three months since I last done a update for you all so I’m back today with a health update. I felt it was time to let you guys know what’s been happening over the last couple of months which has lead to my lack of social media presence. Alongside going on an incredible holiday which we as a family thoroughly enjoyed, as soon as we got home it was straight back to normality – hospital appointments, seeing consultants, starting new treatment and new symptoms constantly arising. The break didn’t last too long unfortunately…
Gastroenterology Appointment – 4th September:
After waiting months to see my gastro consultant (we’re meant to see her every two-three months, but we got lost in the system apparently so had to wait nearly 7) when we got to the hospital we were told she wasn’t there as she was poorly therefore someone else was stepping in for her that day. To say we were disappointed was an understatement but actually meeting my consultants understudy whose just qualifying as a consultant, whose going to be part of my team, was actually a blessing in disguise.
After home studying recent scans and reading my notes right back to the beginning he told me that my disgestive tract paralysis, especially my bowel, isn’t going to ever get better. Why? Because it’s misshaped, floppy, Ive been on treatment everyday for four years & none of its worked and finally the illness is to progressed now to get better unfortunately. I’ve been told this twice before but when having a new set of eyes telling you this, it never gets easier to hear. We told him about the treatments I’ve been on and we’re currently on and he actually told me that my consultant was wrong for keeping me on them for so long, if after 4 weeks a treatment isn’t working – you know it isn’t going to work full stop so you shouldn’t continue taking it in his eyes. He continued to tell us about the new treatment that on the market and that he wants me to try both of the ones for my bowel. If after four weeks it doesn’t work go onto the other!
Since the appointment, I tried the first treatment which was called Lubiprostone and this treatment you take once a day. Unfortunately I had no good outcome with this treatment, i must have had every single bad side effect possible as I was doubled over in pain etc. It wasn’t the best of experiences I had with this treatment but that’s not to say it wouldn’t work on someone else, it just didn’t on me. I’ve also just finished my other treatment which was called Linaclotide and this treatment you also take once daily. The outcome with this treatment was also the same, It didn’t quite work it’s magic on me unfortunately. But I must have also hit every bad side effect with this one as i was in more pain than what I usually am which is a nightmare for me as it just really kicks my butt. Moreover, I finished my treatments on the 6th of November and i now have to go treatment free until the 3rd of December until I see both my consultants. Myself and my family are hoping they have a new plan awaiting us when we see them. *fingers crossed*.
Bladder Scan – 5th September:
After the results of my bladder test on the 20th of June, the doctor asked me to come back in a couple of months so he could re-do the camera test and hopefully see a difference. As I’ve mentioned before, this isn’t a painful procedure, it’s quick with no anaesthetic – just numbing cream around the area in which the camera is placed. It’s a little uncomfortable I’ll admit but it doesn’t take long.
Anyway, I started by explaining to the doctor/consultant who was doing the procedure some of the symptoms I’ve been having since taking the catheter out – spasms, pain, bleeding and still getting clots despite self-catheterising (makes it harder for clots to come out). He explained that everything I was expierencing is what he’d expect me to be having after the damage caused plus having a catheter for so long. Furthermore, after talking he started to do the test. Firstly he placed the camera up my up uterus to see how the damage was from the catheter trouble I had a few months ago, thankfully he said that it was looking good. The scar is small, there’s some scar tissue around the area also and there was quite a bit of blood but he said that was to be expected. Then he went up into the bladder itself and to our surprise there was a difference defiantly. There was still some scar tissue, quite a lot of clots floating around and blood in the bladder but he said he wasn’t worried which was brilliant as that meant no operation!
Cardiology Appointment – 28th September:
Cardiology is always an appointment I don’t mind going too, I always feel so much more at ease with my cardiology consultant than I do anyone else. Anyway. since having the heart monitor fitted which showed that my heart skips a beat – I’ve been having some severe heart palpitations which have been worrying me especially with me having PoTS and this being what lead me into hospital early this year. So my heart consultant brought forward out appointment so he could see us, he took my pulse and blood pressure, my pulse was running fast but nothing he was too concerned about especially as I’m on beta blockers but my blood pressure was quite high so he did say it could be a mixture of both the PoTs and that. He wants to do another heart monitor, this time for a MONTH! I know, a blooming month. But it’ll be worth it so he can track these palps and keep a record of my heart rate as it goes from really high to really low so it’ll be interesting for him to see that.
Gynaecologist Appointment – 16th October
My gyne is actually still in the children’s hospital which is such a strange feeling going back in there after so long. Everyone knows me yet I feel like their strangers now and it’s the weirdest feeling. I knew going to the children’s hospital meant that I was going to get weighed which was a good thing as we wanted a weight anyway for my gastro doctor and dietitian, so after getting on the scales we got told I’d lost over 2 and a half stone. I knew I’d lost weight but I had no idea it was that much, my stomach hasn’t been tolerating much and it’s obviously showing!
Anyway, when speaking to my gyne she mentioned about me getting the coil which to me right now is a certain no as the pills I’m on right now aren’t the best solution long term. I’ve been on them well over a year and they are defiantly starting to ware off on me, so we are trying to find another pill which will work but it’s certainly proving difficult. Due to having pressure&swelling on my brain I can’t have anything with the hormone oestrogen in (as it can cause me to have a stroke), I can’t have the implant again as it made me gain nearly three stone in weight/caused my migraines to get worse and I struggle with other pills (like Yasmin etc) as they don’t slow my periods down, so I’m in a no win situation. So we decided to stay on my pill I’m on for now while she continued to search for another pill for me, if any of you have suggestions – Please do message me or comment below as I’d really appreciate it!
Stanmore was completely set in stone for me to be admitted to the rehabilitation centre for two weeks from the 23rd of October till the 3rd of November but unfortunately I did have to cancel and re-schedule for January 2018.
As I’ve mentioned above, I started treatment for my digestive paralysis in September for four weeks which I wasn’t expecting to knock me off my feet like it has. Alongside the treatment, my migraines have been the worst they’ve been so having them two things together whilst at rehab, I knew it just wasn’t going to work. So we decided to give the rehab nurse a ring, tell her all that’s going on and to our surprise she actually told us that they wouldn’t have wanted me to go and do all the physio etc whilst on treatment anyway as it wouldn’t be fair. So we decided January would hopefully be better as we can consult with gastro about treatment in December and make sure I’m not starting any until after the rehab therapy for my shoulder.
Neurologist Appointment – 10th November:
After my last neurology appointment, my neurologist left which meant yet again I got lost in the system. After a very long few months of waiting, ringing back/forth, we finally saw my new neurologist and it went better than I anticipated.
As a lot of you know, since November last year my migraines have continued to go in a downwards spiral with symptoms worsening week by week.
And that’s the end of today’s update for you all lovelies, apologies that today’s post is a little long but obviously I wanted to keep you all updated as I know you like to know what’s going on.
I really hope you like the new blog, I’m beyond excited for the upcoming content and I really hope you are too! Also, I really hope you liked today’s blog post and you know that I appreciate you more than you ever know. Thank you all from the bottom of my heart for your continuous support, love and encouragement – it truly means the world to me.
Sending you tons of love and hugs as always,