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
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
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!!!!
Wednesday, 26 September 2012
Baby is wriggling around lots, it seems to only settle down in the morning but moves constantly other than that. Its a nice reassurance though that baby is doing well.
Unfortunately I haven't had a very good few weeks. The morning sickness came back and on top of that I was constantly dizzy and felt as though I was going to collapse. Lots of tests and all came back clear. The Dr gave me strict orders to rest (which could be the worst thing anyone could say to me), and carry on making sure I am eating and drinking enough. But I have done as I am told and now starting to feel better and looking forward to going back to work on Monday. I'll be 23 weeks!!! And only 11 weeks left at work, one of which I am on holiday. This pregnancy really is flying past, its making me wonder if everything will be ready in time for baby's arrival.
Tuesday, 11 September 2012
I seem to have had a unwanted return of my morning sickness, spending the majority of yesterday bent over the toilet. Luckily today the vomiting had stopped but the nausea has stayed around all day. I was not expecting this, I thought I had seen the back of it; fingers crossed it doesn't hang around for too long. 20 weeks left and I don't want to spend those with my head over the toilet. And just when I'd started really enjoying being pregnant!
OK I'm not too hot on law, but not impressed today when I tried to purchase tickets to a Peter Andre concert on 15th December. It was going to be my gift to my best friend for her 30th birthday, so absolutely gutted by the result. I have been trying to get tickets since July. The venue have been appalling at getting back to me. They returned my call once at which point I asked if it was a seated event or standing event. I was told it was standing at which point I asked if they have disabled facilities as not only do I have arthritis and could not stand for the length of a concert but at the time I will also be 34 weeks pregnant. He told me they have a raised disabled section towards the back but he would need to check what was available with the venue organiser and would get back to me. He didn't. Throughout August I was calling every few days to get an answer, I left voicemails every time as there was no answer, and as of today my call had still not been returned. So I have called again and was told due to health and safety as it is a standing event they cannot provide any seating. So in actual fact they will not accommodate for the disabled. Absolutely gutted, I feel I have let my best friend down! It really does suck having this disease. I know I would probably need to sit down anyway due to how pregnant I will be, but it would be the same if I wasn't pregnant. I feel so disappointed, surely there should be some law in force to prevent this obvious disregard for equal opportunity?
Thursday, 6 September 2012
I had been thrilled at my last appointment to be told i wouldnt need to be seen again until after the baby had been born; which was fine by me as I had been managing well. It was sad however as Dr C said it was the last time i'd be seeing him as he had a job elsewhere. He had been looking after me since my arthritis was first suspected. Unfortunately, a week after this appointment my arthritis started flaring - the main problem being in my hips and not being able to put weight on them but also swelling and pain in my lower limbs and hands. I wasn't expecting an easy pregnancy but I was hoping i'd be one of the lucky ones whose arthritis would go into remission for this time. Still i'm plodding on. Its been six weeks since the flare started and things have become much easier again, however joints keep playing up intermittently and are quite stiff. Just trying to keep mobile.
So back to the appointment today, I have been stewing over it the last couple of days; as i was a bit nervous about seeing my new consultant for the first time as well as it being the chance to ask some important questions about certain aspects to consider, now, at the birth and after. After sitting in traffic longer than I expected I reached my appointment with a minute to spare, and my pregnant bladder desperate to be emptied. I dont know why I was expecting to be seen on time.
I was called in by Dr S, not in the usual fashion 'Mrs Grant' or 'Charlotte' or 'Charlotte Grant' but instead 'Grant, Charlotte' which I didnt really appreciate and to be honest wasnt a good starting point. Next I see the Dr pick up my records at the same time I am entering his room. So he has no clue about me, OK. So when he asked me how I was doing I thought I'd help him out a bit by responding 'Dr C didnt want to see until after having my baby as I was managing well when I saw him but a week later I started flaring.' Nope, obviously this was not enough as I was next asked 'How olds the baby?' ARGHHH!! NO, I'm 20 weeks pregnant, obviously he just thought I was a fat cow. So I correct him and explain the flare and where I have been experiencing symptoms. Obviously, sods law I was having one of my better days today so hard for him to see. He carried out an examination and at least could see the pain my left hip is causing me. He therefore decided to refer me to a physio, which I am happy with, as obviously drugs carry too many risks in pregnancy so anything else I can do to help is a bonus.
I had the questions I had pre-prepared as I wasnt expecting another visit between now and after the birth. So I start by trying to find out with him if the inflammation in my back will pose any problems or complications if an epidural or spinal block was needed in labour or in the event of a caesarean. He agreed this was a very valid question but couldnt understand why i'd have inflammation in my back. I explained that I suffer with pain in my back, especially the lower back and coccyx. He told me this was to be expected in pregnancy at which point I had to correct him saying my arthritis has always affected my back. He therefore checked a lumbar xray from 2010 and confirmed it should be fine. I was looking for more of a confident answer bearing in mind the situation of inflammation could very well have changed since 2010.
Next I went on to explain that I would like to go back on medication as soon as possible after the birth and therefore wanted to discuss this so it could be ready to start. I mentioned I didnt want to go back onto Methotrexate. No question was asked as to why, and I was shocked by the next thing which came out of his mouth. 'Well there's Leflunomide.' If you are a regular reader you may remember that this was the drug I was initially told I had to be off for a year before trying to conceive but when it came to it they had changed this and said 2 years, so I had to go through a wash out procedure and then wait ages for special blood tests to confirm it was out of my system. At this time I was told (and it was coroborated with information I was able to find on the internet) that this drug is no longer given to women of child bearing age. Not only am I definitely of child bearing age but the Dr didnt even establish if I was likely to have any more children. I told him I wouldnt be going back onto that either but it scared me that this was suggested so easily and makes me wonder how many other women which may want children are still having this prescribed to them. I think I will discuss my medication at my next appointment as I will be seen again in 2 months.
The last question was advice on whether i should let the obstetric consultant know about my recent flare up, as I saw her also when I was managing well and on that basis she had said she wouldnt need to see me again until 34 weeks. Dr S, said he see's no reason as its just 'a mild flare up'. Yes mild now! Not 6 weeks ago. I think I will ask this question at my 20 weeks scan next week instead.
So i'm given my follow up appointment sheet to take to reception and notice he had written my name as 'Charles Grant', so not only am I fat, not of child bearing age, but I am obviously also a MAN! At reception I had to ask if this was my new consultant as in all honesty I had expected a woman from what I had been told previously. The receptionist said that it was a locum I had just seen covering until my new consultant starts in November. I couldn't help but to respond 'Thank God.' If it had of been my new consultant, I would have been insisting on a change in consultant. My appointment in 2 months should be with my new consultant too so hopefully will find this more beneficial. I made sure to point out to the receptionist the error with my name, I wasnt going to let that go by unnoticed! So now I await my physio appointment to come through.
Not an over impressive day and a bit disheartening as I was expecting to come away with some answers. Now it will just be a waiting game until I can ask these questions to someone which can help and with any luck may be familiar with my notes first.
Monday, 3 September 2012
I cant believe how exhausted I still am, I'm sure all I do is eat, work and sleep! Well sometimes sleep - its quite interrupted, cant quite get used to not sleeping on my back or tummy, and with the added discomfort of my arthritic pain in my hips I'm not getting many nights which I get to sleep through. At least I'm getting used to it now. Good preparation for 5 months time, lol!
Keep feeling what I think is flutters but I just want baby to really start kicking, just a bit of reassurance everyday that he is doing well.
Sunday, 5 August 2012
They say the second trimester is easier. It is in that my breasts aren't tender anymore and the sickness has worn off just cropping up on occasions, but I am still so tired. No amount of sleep seems enough! I was told the other day that I have now started ''glowing'', I don't see it personally but I'll keep an eye out for it.
So 15 weeks tomorrow and a midwife appointment this week, I'm hoping I will get to hear baby's heart beat for the first time.
Friday, 27 July 2012
.... this week; 13 weeks pregnant and flaring. I have to say its hit me hard and quite unexpected. I had been coping so well and thought that I would sail through the rest of my pregnancy with no flares. Unfortunately the sudden change in weather brought with it my flare. With only paracetamol to help with the pain its been a very uncomfortable week. I haven't really moved from bed apart from the continuing trips to the toilet (pregnancy effect), and they take me a while to get up and moving.
I noticed I was not quite right on Monday; our first wedding anniversary, when a few of my joints started niggling me. When I went to work Friday I had horrendous pain in my lower back with discomfort at other joints; the pain was so full on that I was overly hot and felt sick. Pain has a habit of doing this to me. Instead of powering through the whole day; which I probably would have done when I only had me to think about I went home to put my feet up and get some rest, hoping I would be fine the next day. Unfortunately not, I woke up Wednesday and my arthritis is in full swing; effecting all my joints with not only incruciating pain but swelling too. My little one has kept me going, I'm fed up of staring at the same 4 walls but I have to think about him/her.
Resting the rest of this week and over the weekend I am hoping will be enough. I want to be able to enjoy the rest of my pregnancy, not be in all this pain.
I'm off now for my next dose of paracetamol, fingers crossed this flare will go away as quick as it came on.
Thursday, 19 July 2012
We are pregnant! cannot start to describe how excited we are. I found out on 22nd may, I couldn't believe my eyes when the little line appeared. 3 tests later I was convinced and could not stop smiling.
I got an appointment with the Dr the following day who estimated due date based on my last period as boxing day, this caught me a little of guard as from the clear blue test I was expecting an additional 4 weeks, a January baby not a Christmas baby. As expected due to my medical he said he needed to refer me to an obstetrician for a consultant led pregnancy and that I must book a midwife appointment ASAP.
Midwife appointment was a week later, had to let my manager know as I was feeling rough and had done for a few weeks.
The midwife appointment came and I was quite disappointed as I thought we would get to hear baby's heartbeat. Instead it was paperwork, peeing in a bottle and the midwife trying to get blood. I was glad I have some knowledge of what to expect etc, as considering its our first baby the midwife told us very little.
As soon as I got my scan appointment through I was on a countdown especially as, if the Dr is correct I would be 12 weeks and 2 days.
The scan approached quickly even with my painful growing boobs, the vomiting, the constant weeing, the poor night sleeps and worst of all the dizziness (to the point if feeling drunk where the room is spinning). In between which I was going on and off food.
By the week of the scan, comfortable in maternity day and sleep bra's and with the other symptoms subsiding I got even more excited, and it became even mote difficult to keep the secret. I'm glad we chose to share the news with close family and friends otherwise I might actually have gone insane. And I was really elated by how excited my parents and brothers were as well as the in-laws!
2 night's before the scan I couldn't sleep, I suddenly got nervous about the scan, worrying they wouldn't find a heartbeat, but I kept trying to counter that with the comments I'd had when suffering sickness etc.. saying it indicates a healthy pregnancy. Such mixed feelings!
As predicted the scan was very nerve racking. I sat in the tiny waiting room with hubby desperate for a wee and all of a sudden started crying; I was scared. This was not helped when i got seen and laid on the bed and couldn't see anything on the screen. Oh my god, nothings there, there isn't a baby!!!! But she reassured me when I questioned this saying I just wasn't as far along as the doctor had thought. She estimated I was 7 weeks 3 days - a due date of 28th January 2013. So much better for my baby not to have a birthday right on top of Christmas. I saw a smudge and a little movement, it was the heartbeat, just this little pulsing. I was overwhelmed!!! I'm gonna be a mummy!!!
Booked another scan in for 19th July when I will be 12+3, eek! We should see a proper baby then, hopefully I should feel much more at ease then too.
Between the two scans i continued to be absolutely exhausted and bursting to shout out my news to the world. Hormone changes have given me a bit of a reminder as to what it was like being a teenager, however this is worse. I have constantly been bursting into tears for no reason at all, one minute I can be laughing and the next crying like a baby.
I had my first antenatal appointment with the obstetric consultant as I have got to have a consultant led pregnancy. She went over what to expect from my conditions during the pregnancy and after; and that was about it.
Before I knew it I was 12 weeks and a few days away from the scan, cannot describe how excited I was, with just a hint of nervousness. At last the sick feeling is subsiding and generally feeling better, unfortunately due to the bad weather my arthritis isn't as good as it could be. At about 11 1/2 weeks I started to show and my clothes became more and more snug, I only needed another week for it not to notice so nobody guessed - with any luck they may just think I'd put on a few pounds.
Scan day today...Eeeek!!!! Oh wow, how much baby has grown since the scan 5 weeks ago. This is what i was expecting to see back then! It was such an amazing experience seeing our little baby, and shocking at just how much it was moving. I really am going to be a mummy!!!! I cannot even start to explain how emotional this is! 12 weeks + 3 down, 27 weeks +4 to go until baby will be in our arms.
Wednesday, 9 May 2012
I don't know why but its a really hard week!
I feel exhausted both physically and mentally. The bank holiday weekend was quite busy so done little to recuperate. Celebrated my birthday with lovely friends which was nice.
Got my MRI Friday and maybe a little nervous about that.
Hubby and I are both trying to eat healthier, fell down today, so hungry so guessing my monthly (or not so monthly, currently) visitor is on its way. I hadn't been thinking about conceiving this month and just in the mind set that it will happen when it happens but the thought of my period coming has made me a little down.
Fingers crossed next month will be the month.
Friday, 27 April 2012
What a wonderful way to introduce myself back in to driving - motorways in torrential rain I could barely see in front of my face - nice!! But I managed it, and surprisingly it's easier than getting back on a bicycle after not riding it for a while. A bit concerned however at the progression of my arthritis since last driving in November - I never noticed the pain in just holding the steering wheel before! For the rest of the week and as hubby got better we shared the driving and by our return home he drove the whole way, so I got a nice kip.
We had a busy week whilst away and made sure to make the most of it, even though the weather wasn't as good as it could have been. A bit of a contrast to our trip to Egypt last year.
We visited Cheddar gorge on our first day trip - it was quite novel as the dog was not only allowed in the caves with us but also shops and restaurants. Theo loved it, I don't think he quite knew what to do with himself. I was proud of my achievement too as we climbed Jacobs Ladder (274 steps), it was hard and every step painful but I was determined not to let my arthritis stop me. I did however make the most of the rest stops on the way up.
Another visit was to Longleat, whilst the safari was in the car, there was much more to see which also involved lots more walking. Very tiring but I kept pushing through, I am determined this disease will not get the better of me! It was hubbys first experience of a safari park but even I was amazed at how close lots of the animals were. We had a monkey drinking the water off the car and then a naughty monkey trying to bite the nozzle for the windscreen water spray off. A rhino nearly walked into the car and even a tiger was within touching distance of the car. I wonder how these animals would have reacted had we been allowed to have Theo in the car, or even how Theo would have been had we taken him. Maybe we won't try that!
On the nicest day we had (weather wise) we made the most of it and went to Weston Super Mare, Theo and hubby ran around the beach like loons, whilst I would have pretended not to know either of them, I really wish I was able to run about like that without causing myself pain. We had fun though and spent a long time walking, then the weather turned. What's all this about a hosepipe ban???? Had a bit of a drive then got back to the caravan, later in the day as the weather had picked up again we strolled the 1/2 mile to Berrow beach which Theo loved again. He then spent the rest of the evening sleeping and didn't even mind us leaving him to go out for dinner.
Wednesday took us to Bristol and the Clifton Suspension Bridge. The heavens opened when we walked across the bridge - but it was well worth it as it was quite spectacular! We then drove into Bristol after I had a slight problem navigating as I was looking at the map wrong. I did wonder why the road names weren't matching up to the road names on the map. I'm sure driving somewhere unfamiliar could cause the calmest people to have arguments - hubby got a little stressed finding parking. I was helpful saying things such as 'Follow the signs' or 'I can't see, I haven't got my glasses on'. We eventually got parked and done yet more walking. After visiting the Christmas steps and the fish n chip shop we went back to the caravan. I was in need of a rest which turned into a nap, a 3 hour nap. I had to give in at this point. Luckily we had nothing planned for the next day and just relaxed, taking only a leisurely walk along Berrow beach.
It was a lovely week, and now got a busy weekend to look forward to. Its my twin nephews 3rd birthdays today; they are very excited to the point that they sang happy birthday to US when we rang to wish THEM happy birthday. I also have the pleasure of a birthday Sunday, slightly older than 3 though but will be sharing their birthday party tomorrow morning and then in the evening having celebrations with my family.
Sunday I am expecting to be spoilt rotten by hubby, I think I deserve it - after all in the last year I did give him the pleasure of making me his wife.
Monday is going to be spent catching up with friends and catching up on washing and housework whilst hubby returns to work. But back to reality for me on Tuesday too, only a 4 day week though and then more birthday celebrations with friends.
Now I'm just hoping hubby can stop with the accent he has picked up and the continuous 'Alright my Luvverrrrrr!'
Friday, 20 April 2012
These things always have immaculate timing. Last Thursday hubby woke up in agony with pain in his knee, obviously I thought he was exaggerating, but by hat evening it did look quite sore. As I cant drive his dad took him to out of hours, where he was diagnosed with Bursitis (AKA Housemaids Knee -which i found highly amusing) he was prescribed antibiotics.
However Wednesday evening he was still no better, in fact it was getting worse. Again the caring and patient wife I am thought he was making a mountain out of a mole hill. So he drove to A&E, and surprisingly seen quite quickly. An Xray and lots of bloods later they decided to keep him in. 'Sorry, what?'
Yes it caught me a little off guard it was the last thing I was expecting and so much went through my head but I tried my best to stay brave about it in front of him as I could tell he was upset. Then PANIC! How am i going to get the car home? Even though i knew i am probably well enough to drive now i haven't driven in 4 1/2 months - its dark, and I haven't got my glasses. Thank god for my parents, they came and sorted that out for me. His parents came too and we waited with him until he was put on a ward, at which point they took me back to get him some things. Eventually after dropping these off, and a bit of a break down when leaving the hospital I got home at 12.40. I sobbed, and my little Theo (the dog) done a very good job at looking after me but didn't stop looking for his daddy. I was not only worried about hubby but as I rely on him so much at the moment I was worried how i would cope at home without him.
I have done well though and hopefully he will be discharged at 12 and on our way.
Oh yeah I forgot, i thought I'd chase the EEG results to see if I can drive now - after all it was ONLY 8 weeks ago I had the EEG, and I NEED to drive. Eventually after finding out they hadn't even done the results yet, the secretary got the DR to look at them and called be back to say 'I'm fine to drive'.
Yes so happy however still a little nervous.
Life seems such a whirlwind at the moment, if its not one thing its another - wheres the light at the end of this tunnel?
Wednesday, 11 April 2012
Following my rheumy visit and bloods, I awaited my unknown appointment with Gastrology, having no idea what so ever this was for. I turned up with mum by side; dedicated chauffeur for the day - still being unable to drive. In the appointment it was discovered the GP had referred me at the end of 2011 as my ALP levels on my bloods had gone above 400 when they should be a maximum of 200; suspected liver damage. Oh Joy! What a lovely side effect of my medications, so more blood tests, to the point my veins collapsed.
I went away from the hospital wondering what else can possibly be wrong and had 2 bruised arms!
I am quite used to hospitals and being poorly now, so when mum was taken into hospital I was quite shocked at how I just broke down with panic. I held it together fine when I was at the hospital with her, but as usual the hospital lived up to its general standard. Its strange I've never known my mum to be poorly, she never makes a fuss! I wish she would just look after herself - she was laying in a hospital bed STILL worrying about everyone else. Nearly 2 weeks on she is on the mend thankfully, but not sure she'd let on if she was still in discomfort.
Hubby is settled in his new job now which is fab and a relief knowing we will have money again.
I have an ultrasound Friday - don't get too excited not been successful in conceiving yet; its to check my liver following my gastrology appointment. Conception has to be put on hold now too, got to have an MRI scan in regards to seizures which is in May; but then it will be all go again.
The 4 day Easter weekend was much needed as I had got to point of exhaustion. Back to work I went Tuesday and whilst it was a struggle I have in my mind that I go on holiday with hubby and the dog in a little over a week. Really looking forward to getting away from everything that's been going on lately.
Monday, 19 March 2012
I bashed my elbow on our door on the way out to work, not overly aware of what I had done and hubby making me aware of the 'crack' he heard. Oh and then the pain! But soldiering on as I do. Hi! Ho! Off to work I go! Didn't have much of a productive morning and after much nagging from my colleagues to go and get my arm checked; hubby took me to A&E. By this time from keeping my arm still I had gone stiff too! I also had a rheumataology appointment at 4.15 so when I still hadn't been seen at 3.45 I went to the desk which pushed them along. The Dr said it was broken as I could move it (so could my nephew but his was broken) and he wouldn't xray due to us trying to conceive.
So I was in time for my appointment not that it mattered as I wasn't see until 5pm. The result came back wasn't exactly Lupus, it was something which was indicated in the Lupus tests. APS - antiphospholipid syndrome easy to understand as sticky blood. Dr C my normal consultant was in agreement that this wasn't something which could have been left until my appointment in June and needed re-testing straight away to check it wasn't a false positive; it could also explain the fits. Dr C thinks it is important to get this checked and if necessary diagnosed and treated ASAP as it can cause miscarriages. It was as much as I could do not to burst into tears when he started to say this; as if this isn't challenging enough already. So leaflet in hand and blood forms I went to yet another waiting room to get my bloods taken. Began to read and promptly stopped reading the leaflet. I think I will just wait for the results. Dr C thinks an MRI should be done in regards to this and the fits too!
I came home and got ready to update you guys and came across some sad news my friend who is also trying to conceive has miscarried, my heart goes out to her and her husband; I just hope this doesn't make them give up.
Saturday, 17 March 2012
Persistence is definitely something I have lots of, dealing with this horrible disease. As if the constant pain and discomfort isn't enough, the flare ups are just agonising. I wish our British weather would decide what to do with itself - the damp this week has certainly not helped. I don't really know how to explain the pain, imagine be covering head to toe in bruises and then being bashed about; on top of that every movement you make feeling your bones grind together. That's as close as I can get to any type of description. This week has been bad, I've relied on hubby to help me in and out of the shower. He's been able to walk or drive me to work but as he started his new job this week I've been left t get home on my own. I am very fortunate that on the days where I wouldn't have made it home walking one of my lovely colleagues drove me home. I don't think they could ever know how grateful I was of that this week.
Hubby's job is going well so that's all good - he has a smile on his face again. That makes a difference and gives me another reason to keep up the persistence of being off all the drugs to try and conceive.
At 3am this morning it was a different story; I can not describe the pain I was in apart from the fact it is so much pain that I actually felt like I was going to be sick; but was too stiff and unable to move. The frustration of this is GRRRRRR!!!!! I lay awake in pain not knowing what to do with myself until 5am when hubby wakes up and asks me if I am OK. It was as much as I could manage not to burst into tears, he got up and got me some paracetamol; whilst not make much difference at least it helped me get another couple of hours sleep.
I will keep persisting as I keep telling myself 'It's all about getting from A to B' and it will all be worth it when we have that little baby in our arms. I really hope its not going to take too much longer though.
So a chill out day in my PJ's today and a meal out tonight with some old work friends which I am really looking forward to. It will be nice to catch up as its been a long time and will be something to take my mind off this pain for a while. I think hubby is looking forward to me going out, he is having a curry which my mum made for him on his birthday which we've frozen. I don't do curry so he doesn't get much chance of having it, bless him! So his night except from chauffeuring me will be curry with Lets dance for Sport Relief, with the dog for company.
Tomorrow he is working so spending the day with my mum and then seeing my mother-in-law tomorrow night. So Happy Mothers Day to all you Mummies out there (with any luck I'll be one by next mothers day) but a special happy mothers day to my mummy. Thank you for looking after me and worrying about me all the time, but I'm a big girl now so you don't have to worry about me quite as much. Love you xxx
Sunday, 11 March 2012
I'm glad to say hubby starts his new job tomorrow; whilst it will still be a bit of a wait until we get a pay packet at least I know its coming. I have to say I'm not surprised why so many relationships fail in our society; its been a difficult time for us with dealing with the normal day to day things that we have learnt to manage but also dealing with having next to no money. That has been a challenge!
So the weekend came and I was tired and a little achy but managing. Yesterday saw my nephews 5th birthday party, a soft play party and bouncy castles with near on 20 kids aged 5 and under! After a while hubby and I ventured onto the bouncy castle to 'assist' all the kids - and on a couple of occasions the bouncy castle collapsed - PANIC!!! Then I realised that I might be 25 but my body definitely isn't. I fell to the floor and just couldn't get up, I'm sure all the kids found it quite funny. 2 hours later I was exhausted and really starting to feel the pain so I was grateful of the evening just chilled out in front of the TV.
I woke up this morning or should I say I was woken up this morning; apparently hogging the bed. Then spent the next hour and a half clipping the dog, then bathing him. Then went out on a walk over the park, hoping it was going to loosen my joints up a bit. Instead hubby 'accidentally' kicked a football into my back so now I am back on the sofa chilling out again as I figure that along with some painkillers might just sort me out.
Good thing is the dog is happy and fast asleep, not sure how long that will last. Tomorrow will be the first time in over 6 months that both me and hubby will be at work all day.
Saturday, 3 March 2012
By this time I am pretty annoyed so end up leaving quite a short message on the advice line - saying I'm quite anxious to understand the results and I have been worrying about them for the last week. At lunch time I went for a team lunch and typically they chose to call me back then.
Lets wind me up - as if I'm not feeling rough enough at the moment what with my general arthritis pain, sore throat, ear ache and still having the never ending cold along with dealing with my seizures. Yes lets make this worried, and by this point pretty annoyed patient even angrier.
Its OK apparently I have had a positive result on a Lupus test which my surgery notified me off but the rheumatology department cannot discuss results over the phone and will just discuss it in my next appointment as it is ONLY part of diagnosis. What? My next appointment? You mean the one at the end of June? I DON'T think so.
So I let them know I'm not prepared to wait this long and they tell me I will have to get my GP to write to the consultant to get them to see me earlier. I am NOT a yo-yo, the Dr sent me here! She tells me she cant just book an appointment. 2 minutes later I have an appointment with my consultant on 19th March. Why did I have to kick up such a fuss though, can they not understand I'm a person; who is genuinely worried. I am always ill (as I told her) and just want this sorted. On top of this I need to know if these results are going to have any bearing on having a child; really something I cant wait until June for. I don't know how I keep it together as much as I do; not sure the people in the restaurant would agree though as I gradually raised my voice during the phone-call. To all the girls at work, I apologise for any embarrassment I caused.
Monday, 27 February 2012
No such luck; arriving at the Dr's at 5.20 for my 5.30 appointment only to be seen at 5.50 and then get told that they were results I need to discuss with my rheumatologist. The Dr could not comment as he was not a specialist - so why do I receive a phone call last Thursday saying the Dr needs to see me to discuss these results. GRRRRRR!!!!! Organisation people, a wasted journey, wasted time and wasted fuel which I just cannot afford at the moment.
So deep breaths and counting to 10 as chances are it wasn't necessarily that Dr's fault. Still agitated by this I arrive home after being out since just gone 8am this morning to find a demand of payment for my ground rent. I have until this year paid twice a year by cheque but changed to monthly standing order from the start of this year as I know we may potentially move this year so it will save complication. I have to date had 2 months payments taken out with another which will come out of my account tomorrow. I called in January when I received my first notice of payment and trusted it had been sorted out. Obviously not, GRRRRRR!!!!! Organisation people.
So more stress but now with my little rant on here and my strongly worded letter of complaint to the company which will go in the post first thing I am starting to chill out. Where is the chocolate when you need it.
Maybe its just because I'm tired, my fits were bad in the night - they woke me up and scared me to the point I dared to wake hubby up. Yes I'm tired but is organisation that much to ask? Do I not deal with enough already?
Hubby has started a blog now to - check it out if you like, it may show you the other side to some of my stories! http://notoriousaeg-foryouramusement.blogspot.com/
And once again thanks for continuing to read about my little life! x
Sunday, 26 February 2012
Thursday evening 17:22, already a bit anxious about my EEG I was having the following morning, the phone rings. It is the Dr surgery informing me one of the tests for Lupus has came back positive and needs to be repeated in 3 months; but the Dr has asked to see me. Even though its only 38 minutes away from closing they refuse to book me an appointment for the following day as its 'ring on the day' appointments only. Friday morning, before 8am get in the car to be driven to the hospital for my EEG; as soon as it turns 8am (Dr's opening time) I call the Dr's for the voice mail to inform me 'The Surgery Is Now Closed'. I then try again to receive an engaged tone for 15 minutes, then manage to get through to wait in a queue for a further 10 minutes. Lets bear in mind at this point I am in the waiting room at the hospital, waiting for my 8.30am appointment for an EEG. Once I eventually get through there are no appointments left and the soonest they can book me in to see the Dr is a whole week away. So they tell me something on Thursday which I have got to wait and worry about for over a week before I can discuss it with my Dr. Grrrr! Not only this but it means more time off work. I already had Friday off.
It really is quite frustrating, not really sure how I feel about getting that result either. Whilst it might explain a lot of things; it makes me wonder what will come in the future. I don't want to think about it too much before I see the Dr as I don't really know what any of this means.
My EEG went well, the lady doing it was the same lady that carried the test out on me 11 years ago. So after lots of drawing on my head, gluing things on, hubby having a giggle and lots of flashing lights causing me discomfort; the test concluded and I have a potential wait of up to a month for any results.
Monday, 20 February 2012
So 3rd week back at work and been easing into it but worked a full day today; I love being back but I'm not going to lie - its hard! Its exhausting!
It was hubby's birthday Saturday and at 00:02 (yes 2 minutes into his birthday) he had a bit of a mid-life breakdown, I was only teasing - come on he's only 27. I'm 26 this year but what does age matter, I'm like a 80 year old most the time. Not this weekend though, I pulled myself through so that he could have a normal birthday and let my hair down with a couple of drinks, which turned into a couple too many. But it was awesome to actually feel like 26 for once and be a little reckless, definitely what I needed after getting a negative pregnancy test that morning. It was an awesome night and apart from the increased aches and pains, I felt fine Sunday morning. This was definitely a good thing as we were having a family party, 14 of us, 7 of which kids and I had to sort all the food. It was a lovely day, probably a bit noisy if you are suffering with a hangover but you will have to ask hubby that.
So I am gradually getting back into a routine and feeling good for it. I have my EEG this Friday and its still early days on the baby front, so got plenty of time to wait for it to happen.
Monday, 6 February 2012
I was expecting a huge wait for my EEG appointment following seeing the Neurologist; shockingly it is the 24th February - only 25 days after my appointment. I've had one before so nothing to worry about and at least then they will be able to corroborate that there is a brain in there....somewhere!
Using the ovulation kit this month to check; firstly if I am ovulating and secondly when in my cycle it is happening. All the peeing on sticks waiting for what you want to see so that you know you have a chance to get pregnant; and then the day you get the smiley face to confirm ovulation really does make the wait worthwhile. Yes I have definitely ovulated this month so now another waiting game to see if it has been a successful month; fingers crossed! and toes and everything else!
A big step today was going back to work, I only worked 4 hours to ease me back into it. Minus the annoyance of problems logging on to my systems after having access revoked I rather enjoyed it. I was most anxious about walking in the snow. I struggle walking at the best of times, but me and snow/ice do not mix well - its not happy with just seeing the souls of my feet; it needs to see my bum and/or y face too! All in all a good day - exhausted now and painful back but a restful afternoon and early night in readiness for day 2.
Monday, 30 January 2012
I kept myself busy today with my mum as my appointment wasn't until 5pm, but as it got closer I did start to get a bit nervous. I was exhausted before I got in the car to leave for the hospital and don't know how I would have coped without Hubby's support.
The consultant was very nice and thorough, we discussed my medical circumstances and history and unlike my recent visit to A&E he didn't imply that I was crazy for not wanting to do or take anything which will provide a risk or complications to trying to conceive/pregnancy. After a long discussion the consultant examined me; this was the worst part. You'd think knowing that the patient suffers from arthritis you would be gentle - No, obviously not; he was quite rough and instead of tapping to get my reflexes it was more of a hit. OUCH! I am hurting now and was already having a bad day with the pain so I hope I will be able to sleep tonight as had an awful night last night - crying at 3am because of the pain. As much as I wanted to wake hubby up for comforting I stopped myself as he gets up so early for work; it wouldn't be fair.
All in all the appointment was good; awaiting some blood results from last week still as he thinks something like Lupus could be a possibility. He wants me to have an EEG and we will take things from there, so now its just a case of waiting for the appointment. In the meantime he sees no reason why I cant work; but advises I do not drive still until investigations are complete.
My wonderful husband has made me dinner since we got home and I am planning on a relaxing night and day tomorrow.
Saturday, 28 January 2012
I ventured out yesterday with my sister-in-law; it was quite surreal as I haven't really been out in weeks. We went into town shopping for birthday presents. Maybe I was a little too adventurous as I am certainly paying the price today; in a lot of pain. We were in town a few hours and I only had one fit which was minimal and had helped alleviate some of the worry I had about going out. This is good to know as week after next I am hopefully going back to work providing the neurologist appointment goes OK on Monday.
I thought I would be quite apprehensive about Monday but at the moment I am feeling fine about it actually quite excited as it means that I am that much closer to going back to work.
When in town yesterday it was amazing looking around at what was going on around me; I have been used to the same 4 walls but there were people. I had a little giggle when I heard two Young girls talking about what they would give up first, 'Sex or Food?'
Hmmmm, what a question? In order to achieve the desired outcome of having a family giving up Sex would not be to helpful at the moment; somewhat of a necessity in order to make a baby but food is important to stay healthy for a baby to grow as well.
It is quite amusing when trying for a baby how Sex becomes part of your routine; luckily it has not yet become a chore. However my tired hubby may disagree. Its best to stay relaxed about it and not put too much pressure on ourselves and we have found ourselves quite literally laughing throughout the deed.
We have a 60th party to go to next weekend so my lovely husband took me into town again today so that I could get an outfit; but as I feel so BLAH at the moment I ended up getting grumpy with my body and I have decided I will just find something in the wardrobe at home. I didn't mean to be ungrateful but I bet that's how I sounded. I'm just not all that comfortable with my body at the moment; its winter so you naturally eat that little more to keep warm, plus I comfort eat when I feel low which is obviously how I am feeling after sitting at home for so long. I will get back on track once I am back at work but there is only so much I can think about and on top of everything else at the moment; eating habits just aren't at the top of my list. So the answer should probably be food, but maybe I will just start by giving up the worst foods. Dessert, sweets, chocolate!
My plan for the rest of the weekend is to rest up in the warm in readiness for Mondays neurology appointment as well as a friends birthday meal Sunday evening but that should be quite relaxed.
Monday, 23 January 2012
I was even brave with my blood tests today and chanced my luck with the pathologists at the hospital trying to put my previous bad experiences behind me. They got my blood easy and its now all out the way just a waiting game for the result and a little bit of a bruise.
So my Mum spent the morning running me around and when we got back I made her lunch but now I am absolutely exhausted and looking forward to getting in bed tonight; a well deserved lay in for me tomorrow.
Monday, 16 January 2012
This has seemed such a long journey even to this point; in planning to come of medication of which some had to be a whole year, then tests, then eventually being able to try but it not being as easy as you had thought (or hoped). So nearly 1 and a half years on from deciding we wanted a family I cant help but find myself getting slightly impatient. All in good time though, well at least that's what people keep telling me.
Appointment with rheumy next week, a little bit nervous as want to discuss the possibility of all my medical history actually indicating something such as Lupus. Luckily they are really nice and will hopefully listen to my thoughts and investigate but there is a bit of doubt in my mind that they might just dismiss the idea without actually considering it a possibility.
Then the following week neurology appointment which will hopefully mean I can return to work at long last.
Thursday, 12 January 2012
My new phone arrived yesterday so that has taken up some of my time too; it takes so long to set up a new phone, or maybe it is just me not great with technology?
Any ideas how else I can occupy my time until I get myself back to work?
Tuesday, 3 January 2012
Well apart from my normal struggles I thoroughly enjoyed the Christmas holidays, mainly for the fact that I had company. It has been nice even though I have had days of not doing anything, I haven't been alone. So hubby has just left to go back to work, I feel quite sad at the prospect of being stuck at home on my own again.
But on the plus side I am breathing better and (touch wood) have eventually got rid of my cold which has clung on to me since September. So a week of antibiotics and steroids has made my chest much better, yay! The fits while still occurring seem to have died down and every day I am getting closer to my hospital appointment.
So an afternoon with the TV at least hubby only has a half day today.