Introduction

Hi, Thanks for viewing my blog. It lets me have a rant and I may even help someone along the way. Got the idea to do a blog following using an Arthritis Forum for the first time at www.arthritiscare.org.uk

I suffer from Psoriatic Arthritis which is very demanding in all aspects of my life and this is my story on how I deal with it on a day to day basis.

I have been spending lots of time recently researching arthritis and pregnancy, there isnt loads of information out there and the most helpful thing i have found to date is forums and hearing other peoples story. This just confirms to me why I am 'blogging', if someone like me wants to know they are not on their own.

Tuesday, 13 May 2014

Mummy and baby 1 - arthritis 0

Sorry yet again for the absence of any blogging. Still can't believe how time consuming a little one can be. More so now that he is into everything and starting to walk. I could do with some extra pairs of eyes and hands.

Still enjoying every single minute of this amazing journey that is motherhood. Very hard work but so worth it, it's amazing see this little baby grow,  he's now a little boy with his own cheeky personality. He will never know just how much he has changed my life and how he has helped me so much with dealing with and managing my arthritis.

I'm feeling sorry for myself today, the pain is the worst it's been for a very long time. I could cry, but instead I've planted a smile across my face for my little man and just got on with it. He's not going to miss out on things because of this horrible disease too.
Mummy and baby 1 - arthritis 0

Just a mention, late for this year but to help this lady, Heather raise awareness of mesothelioma please check out the following link when you get chance Mesothelioma.com/heather/lungleavinday

Thanks x

Thursday, 16 January 2014

Time flies when you are having fun!

So this time last year I had an oversized belly, swollen ankles, larger than normal boobs, all in all, I was pretty fed up and even though I had just less than 2 weeks to go until my due date it felt like I was well overdue. I was so eager to meet my little wriggler that hadn't seemed to have stopped moving for the past 9 months. After so long planning for the pregnancy because of my medication it was hard to believe the journey had nearly reached its conclusion. He eventually arrived on 23rd January, words can not describe how amazing it felt to be a mum.

So this time next week I will be celebrating my little boys first birthday, it's hard to believe he will be one already. It's lovely seeing him grow each day and I feel so blessed to have our little miracle, but it makes me sad too, he's not a baby anymore. I feel like the firsts are running out though, even when I know I have years of him doing new things. The past year has just flown by, I can't believe how quickly it goes. One of his friends (from our baby group) was one today and had a party, it only seems like a few weeks ago that I met my baby group and their little ones. It's lovely to see them all developing though and their individual little personalities coming out.

I have had so much fun on this incredible journey so far, and although my arthritis still sucks,  it makes it much easier to deal with. I have no choice but to keep going for my little man. When I'm playing games with him even though I'm having to push through the pain to do it, his little smile or giggle just makes all the pain worth it.

Don't get me wrong I still have my worse days when I could just curl up in a ball and cry. But, I get myself up, usually with help from my husband,  plant a smile on my face and just do my best. Today was one of those days and with the damp, cold weather these days occur more often. I still hope that a cure could be just around the corner,  I want to be able to play football with my little boy when he is a little older, and whilst I stretch myself all the time that may be a stretch too far. Chasing after my crawling monster can be a challenge on days like today.

Thanks for reading and sorry for the lack of blog posts in the last year, life is very busy with children. But like with everything I will continue to try harder.

Wednesday, 31 July 2013

Erm, hello? Mother over here not very amused by this!!!!!

Wow! Where have the last 2 weeks gone. Things have been a little bit manic and upside down.

When I last wrote as you know I was in lots of pain, I didn’t however mention that my little boy was poorly. He had come out in some spots, at first I thought it was chicken pox, but soon discovered it wasn’t. He was covered head to two in little spots, he wasn’t quite himself either. His temperature had rocketed to 39.3. We took him to out of hours where calpol and ibuprofen was recommended and told it was just a virus. The following day the temperature dropped to 34.1, after ‘googling’ it, it made us aware that a low temperature can cause hypothermia, so another call to 111, and another visit to out of hours, where we were told to keep him wrapped up. How bizarre, his room was 25 degrees, he had a sleepsuit on, was wrapped up in a 2.5 tog sleeping bag and had a hat on, and yet all night we couldn’t get his temperature to reach 35 degrees. I just knew something wasn’t right (guess this is what they call mothers intuition!), so I took him to the GP. My baby boy is far too precious to me to ignore these symptoms and the fact he just isn’t quite himself. The GP agreed it was just a virus, and I was satisfied with his explanation and agreed with his suggestion to keep him out of circulation for a week.

However, the day after I last posted, I washed him at 8am as usual and he still had the rash which he had, had for 5 days. Less than an hour later I noticed the rash on his leg had changed, I pressed on it and it didn’t disappear. So out came the glass and the glass test reached the same conclusion, the rash was not disappearing. So by this point I was a little worried however my little boy was still alert and responsive and with everything I know about meningitis (albeit very little) the rash is generally the last symptom by which point the they would be very poorly. I therefore made the call to phone my GP practice, who I have to say since joining them in December have impressed me no end. I was seen very promptly, and the Dr was a little concerned but as he was so alert, was in two minds what to do about it. He suggested going to the hospital to be on the safe side and I completely agreed, you can never be too careful. Especially when he is only 6 months and can’t tell you how he is feeling. I don’t really know how I held myself together; I can honestly say I have never been as scared as I was at that point and for the next couple of days.

We went straight to the hospital, and he was looked over by a dr who wanted to take bloods and also suggested possibly carrying out a lumbar puncture. I agreed to the bloods but had to speak with hubby before deciding on the other test and I needed to know more about what it involved, risks etc...

The bloods were traumatic! They struggled to find a vein anywhere and ended up having to go in at his wrist, where they canulated too, so had to splint his arm up to keep it straight. The blood went everywhere, he was screaming. And then when they tried to tape it down and bandage it up, because he was sweating the tape kept slipping off. The Dr seemed to find this amusing, or at least that’s what I got from him laughing. ‘’Erm, hello? Mother over here not very amused by this!!!!! ARGHHHHH!!!’’ I was so angry.

After that and speaking to my husband we did agree to the lumbar puncture but I did ask if anyone else could carry this out, my confidence in that Dr after the bloods wasn’t all that good. Unfortunately, not, but we had to make sure they found out what was wrong so that he could be treated. I couldn’t go in the room with him, and still feel awful for not doing that now. Instead, I sat in the room next door, hearing him cry, it was complete torture, and I just wished I could take it all away from him. Sitting in that room, it took me back to when I was a teenager and my first experience of hospital. I am glad unlike me that my little boy is too young to remember! This was the type of experience that has made me cautious and untrusting of hospitals ever since. They had a similar difficulty with my blood and that went everywhere too. They told my parents to prepare themselves for the worst, as they didn’t have any idea what was wrong with me. It wasn’t until I was sitting in hospital with my little boy that I had any idea how they must have been feeling. OMG, this is hell. This is the part about being a parent I am not liking.

He got through the lumbar puncture like the brave little boy he is and then they began daily IV antibiotics. We stayed in hospital on the same ward I did 14 years ago, for 2 nights and the best part of 3 days. We went home knowing most of the results were clear but we would need to go back the following day for the results of the blood cultures and he would need to keep the canular in, in case they needed to continue with the IV antibiotics. The poor little boy, the arm which was bandaged up due to the canular was the thumb he sucks, so he couldn’t get to it.

The following day we went back and the cultures were clear too. They put the whole thing down to a virus. The canular came out and he got his thumb back. He also got a trip to ‘Toys r us’ and some new toys for being our brave little boy.

What a hard experience, and I am sure I am still catching up on my sleep, words can’t describe how happy I am that my little boy is OK though. I am truly blessed to have him!

I am still suffering with my pain and managed to get to my emergency rheumy appointment, we didn’t go for a steroid injection and instead we are trying a new painkiller, Gabapentin. So far, so good, no side effects to note and it seems to be taking the edge of the pain, making day to day a little more manageable.

I feel like life is just about getting back to normal now, the hospital stay really turned things upside down.

Thanks for reading again, will keep you all posted on any more developments in my life, which now isn’t all about my arthritis, but what comes with being a wife and mother too! Which reminds me, we have also celebrated our 2 year wedding anniversary in the last 2 weeks too. Love you hubby, thanks for being my rock xxx

Wednesday, 17 July 2013

The BEST Medicine

A well overdue instalment to my blog. Who knew how busy a baby keeps you?

Well I am enjoying every second of being a mummy, and my little boy is going to be 6 months next week. The time really does fly. He is rolling over, sitting up and not far away from crawling or cutting his first tooth.

So, the flare settled down, and whilst I was no means pain free I was able to push myself through every day. I want so much to be able to avoid the drugs after the damage they done to my body. I met with the physiotherapist as this is one of the things I have requested to try; the medication really is a last resort! When I met with her I had started flaring again, and hydrotherapy was also suggested. To date I have had 2 hydro sessions, the flare started to settle but BOOM!!! I am officially in agony again. My little boy really is ‘the BEST medicine’, I can’t just give up, and he gives me a reason to get out of bed every morning.

Last night was the first time that the pain has really got to me in a long time. My joints felt like they were on fire and as though someone had taken a sledgehammer to them. Pain is so hard to describe. I laid in bed on my memory foam mattress and it felt as though I was lying on a bed of stones. The pain had me sobbing, this does not happen very often and I feel somewhat disappointed that I have let it get to me. But the sobbing was a combination from the excruciating pain and the frustration of this horrible disease. It has been suggested by my rheumatologist that as well as the arthritis I am likely to have fibromyalgia, I’m currently waiting a referral to pain management.

I have however, throughout my sleepless night made the decision to call rheumatology and request some help, probably a steroid injection. I reacted badly to this before, by going numb all over but it did take some of the pain away. I have to think about my little man now too and I NEED to be able to look after him. I would prefer this to be as comfortable as possible. So I have an appointment at 11am on Friday. I still want to avoid continuous medication but I am at the point where I need some relief. Hopefully, with this, physio, hydro and pain management I will be able to find new ways to deal with it.

As from day one, I hope this blog helps people to understand the condition. I wish people would be less ignorant, whilst I have learnt to ignore the looks and comments when I park in a disabled space, my husband finds this really frustrating, I tell him it is just ignorance. On the outside, I’m young and healthy looking, but you should never judge a book by its cover. Believe me; if they want to park in the disabled bays I would be more than willing to give them this, the catch, they would need to take this horrible disease too. I don’t think I’d have any takers somehow! These little things just make day to day things people take for granted just that little bit easier for me.


Now my little boy is in a better routine hopefully I will be able to update you all more frequently, thanks for reading!

Monday, 25 February 2013

WOW!!! And OMG, I'm a Mummy!

A long time since my last blog as I have been a little busy. I gave birth to a beautiful baby boy on 23rd January at 6.33pm. He was perfectly healthy, weighing 7lb 8oz and had a full head of thick, dark hair - which explains the horrendous heart burn I suffered throughout the majority of the pregnancy.

After 9 months (well less 5 days) we had our baby boy in our arms, WOW!!! And OMG, I'm a Mummy! Labour was by no means easy, but now 4 and a half weeks later it is pretty much forgotten and it was all so worth it. I cant believe my little boy is already a month old. So that was one journey complete, and now a new one is starting and it is so exciting!!!

2 days after giving birth, the arthritis flared and it felt as though I had hit a brick wall. But my son, gave me the motivation to keep going and with some fantastic support from my midwife and GP practice I was given a hospital appointment with my new consultant. It was a very productive appointment and the consultant listened to my wishes too. I am going to go through all the tests again to see what the condition of my bones are like and to try and get a more definite diagnosis on my condition and then get a treatment plan in place to help me get the best quality of life but balancing it by trying to avoid the drugs which give nasty side effects. So at the moment I am managing it with pain relief and anti-inflammatories.

I'm enjoying being a mummy so much, but the arthritis does make some parts challenging. Like the night feeds when I have stiffened up and cant get out of bed when he is crying for a feed. It is amazing how much of a motivation he is and just pushes me beyond where I would previously have given up. As usual I am lucky to have fantastic support from my husband and family and I'm looking forward to the coming days, weeks and months! I'm just hoping it doesnt go too fast as this time is so precious.

So now the journey of motherhood......

Wednesday, 9 January 2013

The Waiting Game

Sorry for the delay in posting. It has been a busy month or so.

We eventually moved and now just about sorted in our new house ready for the arrival of our little baby. It really does feel like a weight has been lifted now, just knowing that we have the room to grow as a family. We moved 10 days before Christmas and I was 34 weeks pregnant. I felt slightly useless, I don't like not being able to do things, you'd think with the arthritis I'd be used to it by now. Moving this late on in pregnancy and so close to Christmas is something I will try not to repeat; however it feels awesome now we are settled.

Bump has continued to grow and continued to be trouble - since my last post we have had another 2 visits to hospital having contractions. First visit was New Years Eve, and again another good experience, they also tried feeding me up in case I was going into labour and the food couldn't have been more of a contrast to the previous visit. It wasn't slop this time, in fact hubby described it as almost gourmet. Bump had suddenly dropped and I no longer looked 8 months pregnant, and yippee some relief from the heartburn. I was having contractions but not dilating, the hospital said I had an irritable uterus. Wonderful! So they let me out and we went and celebrated NYE with my family. I hadn't been as hungry as I was in the whole pregnancy either, I had a good go at the spread mum had laid out, I was convinced the baby was going to be here very soon. We are still waiting.

On Saturday 5th I was in so much pain that I was in tears, it hurt to move. The pain was low down but no contractions. I called the hospital for advice who said rest and take paracetamol, this done nothing and at midday contractions started. They began 10-12 minutes apart but by about 8pm they were only 2-3 minutes apart. I was convinced that this was it. So a little scared I called the hospital who told me to come in. This time I didn't even freak out when I was taken straight into a delivery room. The staff were lovely again, I had the monitor again, they wanted to check babies movements as my little terror is usually very active in the evening and I had only felt about 3 movements since 6pm. They must have thought I was lying as, as soon as the monitor was hooked up it didn't stop moving. Contractions were measured again and I was 1cm dilated, babies head wasn't engaged and they didn't think anything was going to happen. Again an irritable uterus was making me feel how I was, along with a possible water infection which I will need to wait until the end of the week for the results. I was sent home and told to continue with regular paracetamol. This I have done, and had lots of rest. I do however have this little problem that I seem to be falling asleep anytime I sit down. Which I suppose is good as I cant get comfortable and sleep at night.

So today I am 37 weeks 2 days, so officially full term now. It feels like I have been pregnant forever and that I'm going to be pregnant forever. I'm getting very uncomfortable now and fed up, not helped by the fact my arthritis is flaring with the ever changing weather. OK, so maybe I'm just mainly impatient and want to meet our little one. I want to know if its a boy or girl now too. Off to see the midwife this afternoon and just trying to keep my mind active and fingers crossed baby will come soon.

I would also like to congratulate my friend at operationuptheduff.blogspot.com on the birth of their daughter on the 20th December, I believe operation is complete! Its been a long journey, but it is proof the end is in sight.

I am so excited to meet my little one, the end of one journey but the start of the next! Keep you all posted. As usual thanks for reading.

Thursday, 29 November 2012

Finally.....

..........a good hospital experience to report!


Why cant I ever be normal? An unexpected hospital stay. A bit scary but also got some other questions answered which I've had for a long time. But I have to praise the hospital, the standard of care has been top notch, as they say there is a first time for everything! And they dealt so well with my freak out at being taken straight to the delivery room.

So I wake up Tuesday fine, 31 weeks+1. At about quarter to 9 I start getting the pain and pressure I experienced a few weeks back. I carried on with the days plans knowing I had a midwife appointment booked in at 1.15 anyway. I went to see the midwife as planned and was just told to call and arrange some physio as it was likely just to be my body stretching etc.. The pain seemed to subside for the rest of the afternoon until I was eating dinner, at 7.15 the pain came back with a vengeance and became more intense and frequent. Coming in waves every 3-4 minutes. I stayed calm but at quarter to 9 when it wasn't getting any better I was starting to get a little worried. As you know I'm not shy of pain, dealing with arthritis on a daily basis. I called the hospital and was told to go straight up. Oh My God, nothing is ready, I haven't packed my hospital bag, baby's clothes aren't washed yet, in fact I don't even think I've got enough baby clothes. So hard to tell when all our things are spread across ours and our parents houses at the moment as we are waiting to move.

We arrived at the hospital about 9.15, was not expecting to be taken into a delivery room. In all honesty I was expecting them to quickly check me over then tell me to go home. Had a bit of a freak out. I was not going into that room, this baby was not coming now. I was however in too much pain to put up much of a fight and kept being told 'Its the best place for both me and baby to be.' So I went into the room, it wasn't what I was expecting - it was huge! And not as surgical or full of equipment as I thought. I was wired up to a monitor which records baby's heartbeat and any contractions. It was scary, but reassuring to see baby's heartbeat was fine. Contractions recorded quite frequently for a while until I had to re-adjust my positioning to get comfortable at which time they didn't seem to pick up on the monitor when they were happening.

I saw a doc who done the usual checks. After having to ask what the industrial looking torch was for (I knew I didn't really want to know that answer). I wasn't dilating which was good. But she wanted to keep me in for monitoring. My urine had shown an infection so had to start some antibiotics, how bizarre, about 8 hours previous at my midwife appointment it was fine. Then I was told I needed a cannula inserted, not impressed, I don't like these. I hate the feeling of them in me and being able to see them under my skin. A bit squeamish with things like that! But it was best for baby for any emergency medication or if they needed to give me anything to stop the contractions. As my veins collapse easily they arranged for the an anaesthetist to come and do this and at the same time take blood. She was fantastic and I was able to discuss with the her the easiness and effects of an epidural or spinal block if needed due to my arthritis. It shouldnt be a problem and something which they will get around at the time if needed and which I can discuss with them at anytime so I felt reassured about this.

The doc also done a quick scan to check the baby's positioning as unlike the midwife in the afternoon they wasn't sure that the baby was head down and actually thought it was transverse which could be a problem if I was going into labour. But baby was head down so that was reassuring too.

It was decided that I needed to have some steroids as if baby decided to come then it would help mature its lungs to give it the best chance. This is administered by 2 injections 12-24 hours apart. So I was also stabbed with my first dose of this in my right thigh. And tonight have noticed a nice big ugly bruise it has left! The pain started to subside around midnight and whilst I was still experiencing tightenings and pressure the pain wasn't there like it had been. I was to be transferred onto the ward.

I got to the ward about 3am Wednesday by which point even the tightenings were less frequent and I was starting to relax. Hubby left and I was on the ward wanting to cry, I had definitely not planned any of this. Some of my family who are ITFC supporters thought it was just an excuse so they couldn't mention the win they'd had over my team. As I said we just felt that ITFC needed the points more than we did right now!

Sleep isn't all that possible in hospital, they are such busy places but I must have got about an hour and a half. About 7am I was handed a lunch and dinner menu. 5 minutes later when I was asked to make my choice my answer was 'Well I don't intend to be in here by then.' I had to chose anyway, not really the time of day I want to be choosing food. But I chose, jacket potato with butter followed by vanilla ice cream for lunch and then cottage pie followed by orange jelly for dinner. Before long it was breakfast, luke warm toast and solid butter and orange juice. Kept the orange juice for hubby later as I didn't fancy it. I was glad when I was offered tea!

Time drags and the clock moves very slowly. They wanted a urine sample and found ketones and glucose traces, so for the rest of the day they wanted to collect my urine and measure and test in case I had any diabetes develop since my GTT test 3 weeks ago which came back clear. The monitor was put on me again and I had my obs done. No contractions, still the tightening on and off with twinges. The concern however was that my pulse was up to around 112 and the babies was around the same, so they got the machine to record my pulse too. This was then reviewed by my obstetric consultant and her team when they came around 10am. It was decided I would continue the antibiotics, have the 2nd steroid dose at some point later that day. She also decided to send me for an ultrasound to check baby in more detail, measurements etc.. and for me to continue being monitored including have some blood prick tests to check for diabetes alongside the urine testing. When they left hubby was waiting outside the curtain; I was so happy to see him. We were soon sent down for the scan which was even more detailed that the last time, all of the babies ribs were clearly seen along with facial features. However,  I didn't look too much as I didn't want to chance seeing the babies sex.

It wasn't long before lunch turned up, at the time I was however seeing a student midwife who was feeling my tummy and doing the usual checks. So by the time I got to eat, the jacket potato was cooling down, however it was going to be bland anyway. My ice cream on the other hand now resembled more of a mousse. OK, I suppose you cant expect any gourmet food!

I sent hubby home just before 1 as he looked so tired and I wanted him to get some sleep. I thought I might myself be able to get a little bit of sleep. However, as I say hospitals are busy places and along with the constant need to wee I didn't really get much rest. At just after 1pm, a midwife brought me some sexy stockings to prevent any clots. Great idea, I did however wonder why this had come 16 hours after I had first come in.

The rest of the afternoon moved rather slowly and still I couldn't sleep. Clock watching I am sure makes the time go even slower. I even took to counting the dots on the ceiling, I didn't get too far with that either before I lost concentration. I spoke with a few other girls on the ward and heard some of their stories but in general it was quite quiet. My urine seemed to get better with the traces of ketones and glucose getting smaller. This was all looking positive along with not experiencing contractions anymore. I was really hoping I would go home soon now.

I had more monitoring start at 4pm and the midwife was pleased to see my pulse had lowered and the babies heartbeat was no longer showing the same as me. It also monitored the babies movements which I was pleased to say was back into its normal patterns. The monitor was showing both babies heart beat and my pulse were varying but definitely 2 very different readings and generally staying around where they would expect to be. Hubby turned up as this monitoring was coming to an end, and next thing I knew it was dinner. What can I say? Slop? I don't know the words couldn't quite describe it so I managed to capture a picture. And I'm sure you'll agree, that's not the orange jelly I ordered. Hubby was happy though as he got that too!

My obstetric consultants registrar came to see me and I had my second prick test which showed a drop from 8.something to 4.something, which was in normal range, my urine was also OK now. The scan was all normal and showed baby was well within the averages for what was to be expected at 31 weeks. So i asked about going home. It was agreed I could, I'd just need to have my second steroid injection. They were trying to suggest this was done at midnight so that it was the 24 hours apart however after some sweet negotiations I made them see that if they done it at 9, I could then go home that evening with hubby and free up the bed. It was agreed, yay!!! So at a little after 9 I was given my injection and eventually got the cannula out which felt amazing as it had made my hand so itchy. I was given my antibiotics and sent on my way - feeling a bit sore from all the prodding and poking, a bruised hand from the cannula and much in need of sleep, after having only 1 and a half hours in the last 38. I have to say I was very happy to be home, as much as its filled with packed boxes, when we got in at 10pm, and very pleased to see my little pup until he thought my legs would make a comfortable pillow! I slept well, waking up a few times as usual for my nightly toilet visits and gaviscon doses, but slept until about 9.30.

Today I am feeling much better, quite drained and a bit of a headache but so glad to be home. I will be getting lots of rest as I have a feeling I might not have quite as much of that left as we had originally thought, but over the next week I will be packing my hospital bag and with the help of mum getting all of babies clothes ready, just in case!

I want to enjoy the rest of the pregnancy, its so amazing growing this little person inside me. However, ideally I would like it to stay put just a little longer, as much as I cant wait to meet him/her I want it to have the best chance and that means at least another 6 weeks to take me full term, 37weeks.

I am pleased to say I am feeling much more confident about the whole situation now when it does happen, after this hospital stay, as they were brilliant. I also know what to expect from the delivery room, wards etc... I will also know that we need to have plenty of snacks, dont really want any hospital food again in a hurry! Enough chatting, from me, plus I could probably do with some more sleep. Well if this little monster lets me, kicking away happily as usual. Got to be male with all this its been putting me through!