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.

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!

Tuesday 13 November 2012

IF........???

Well last week was different! I woke up at 4a.m Monday morning being ill and then had sudden immense pressure low down and intense pains, I thought I was in labour! The pain and pressure was still there by midday at which point I called the midwife. I was really scared, far too early for baby to arrive and I am so not ready yet. The midwife came and checked on me, said it could be a sign of early labour and to call hospital if it got any worse. She also told me babies head was down. This done nothing to relieve my panic.
The pain or pressure didn't go but I managed to sleep, and felt reassured as I had an antenatal appointment at the hospital the following day anyway, so I'd be in the best place if anything did happen. Tuesday morning the pressure was still awful, feeling like I needed to wee but nothing was coming out. The pains kept coming in waves too. The appointment was the normal 28 week check and glucose tolerance test which I had been dreading as they can never get my veins. However the appointment went really well. 9a.m first blood test after fasting from 10p.m, followed by a special drink. Then the usual checks and got to hear babies heartbeat again. (I never get over how amazing this is!) Midwife was concerned with how I was feeling though and as I had a two hour wait before the second blood test she got me in to see the doctor who was able to confirm while babies head was down it wasn't engaged but to get in touch if the pain gets worse. After this the pain began to ease thankfully, becoming less frequent, however definitely experiencing Braxton hicks! Pressure is still here but must be the new position the baby is in and it's growing weight. Second blood test went smoothly too, yay! I was glad that was over.
Friday, brought my first appointment with my new rheumatologist consultant. Another awful experience so it will also be the last, I have requested a change of consultant. She had the inability to listen and could not seem to understand I constantly ache and I'm in pain. She kept saying, "well IF it's psoriatic arthritis", "if it's bursitis". OMG, the 4 minutes she spent reading my notes evidently were not enough. I have arthritis and have done for over 10 years now. I was on a cocktail of drugs before suspending them so I could safely have a baby. I am in constant pain and live with it everyday. This appointment was so that I could discuss other drugs available to try once baby arrives and have it available to commence immediately following birth. Instead, she'll see me after the birth and talk about it then. As I say she had the inability to listen! So the hour and 20 minute wait for my appointment and the appointment itself was a complete waste of time. Looks like again I will have to rely on my persistence to push through the pain until I have the chance to see a capable rheumatologist which can at least try and help make my life more comfortable.
While I was in the appointment I chased up my physio appointment which the Locum had requested at the start of September; which I was told I'd get an appointment for within 2 weeks to try and help my hip pain, to hopefully alleviate some of it prior to labour. I had called at the start of October to chase it up to be told it was still going through the triage system as they had a backlog and I would have an appointment soon. Friday the receptionist told me they were up to date, and had no request for my physio so I would need the consultant to do another referral. So i requested this and nearly had the referral form in my hand, when she decided she wanted to look at my hip. At this point she decided she wanted to send me for an ultrasound before I had any physio. The receptionist sent me to the ultrasound department saying they would just do it the same day. After getting lost in the hospital corridors I found myself (with the help of a porter) in the ultrasound department. I checked with a staff member as there was no receptionist that I was in the right place. I was and only had 25 minute wait for the department to open. So more sitting around waiting and when the receptionist turned up we were then told that they would make me and appointment and send it through in the post. Excellent, so now it looks like I'll have 3-4+ weeks wait for the ultrasound of my hip and then they will decide if I should have physio which is what i want to try and help the pain as I will continue with 'no drugs' for the health of my baby! No doubt it will then take 3-4 weeks to get a physio appointment. So if I am lucky I might get the physio before I pop! BUT with only 11 weeks left its going to be a close call.

I cant wait to be able to blog, one day, that I have had an awesome and really productive appointment. The 3 and a bit hours at the hospital was torture!!! I hate hospitals.

On a lighter note my little one is very active and keeps kicking me to remind me of its presence. Still weighing less than I was at the start of the pregnancy, I am trying to enjoy it all as much as possible. 29 weeks and 1 day today, not long left!!!!