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Raisie Bay

hospital

Hospital and Family Memories

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Last week I left you as I tackled my roller coaster life. Well, I’ve been so busy since then, but things seems to be getting better. With school visits, shopping and a day out at an inflatable theme park spirits have been lifted a little. Even though I’m a little exhausted too.

Hospital Memories

This week I will be in hospital for the first two days, so I may not be around much. Or I might be if I can get on the internet while in the hospital and I’m bored enough. The hospital is like my second home now, I don’t even have to give my name when I walk into the reception of my usual ward.

It takes me back to just a few years ago when it was the same for Star at the Children’s Hospital. It was Christmas 2013 when she was first fitted with a halo, how appropriate. She earned her nickname Star for all that she went through, she truly shone despite the pain and sadness. Now she has to see her consultant just once a year, but she still has to see a nurse every three months and has another appointment with the very busy geneticist next year. The good news is that she seems to be doing just fine, and she copes so well with her pain. Yes, she is a Star!

Family Memories

This weekend Graham’s brother came up to visit from his home in Dorset. He brought his two young children with him. We had Graham’s Mum come to visit too and they all stayed for the day. It was so lovely to have family around, the kids ran riot and made an awful mess, but I loved it. I do think that my kids are way to quiet and tidy sometimes. When my older two were little the house was never tidy, but they didn’t have laptops or phones to play on. They did have the Nintendo, but still liked to play and make mess. My kids, even when not on devices, will do quiet stuff like draw or read. The Little Man loves his Lego, but he always puts it away after playing. 

Having family around brought back memories for both me and Graham. When we were young the house was often full of cousins and aunts and uncles. We used to have visitors all the time, or we’d be the ones visiting. My mum had five sisters and two brothers, so there were many, many cousins. Usually, me and my two cousins of a similar age would be on tea duty and be sent to the kitchen on a regular basis to make pots of tea for everyone. 

These days it seems a rare occasion when we have lots of family visiting, or we visit family. Most of my family dissipated when my Nan passed away, but one of the main issues is the age differences in my own family. Two of my  brothers are a lot older than me and their children are even older than my eldest children. So the only cousins my youngest kids have are Graham’s brother’s and, as I said before, they live in Dorset. 

Families tend to be smaller these days and families don’t always live close together any more. I know that when I was little, four of my aunties and my Nan all lived in walking distance from us. 

I do miss those family days though. Even though it meant more arguments, more mess, and definitely more cups of tea. It was never dull.

Do you come from a large family, or have a large family now? Do you get together a lot with family?

I’ll leave you with a photo of a tired out Christmas cat 🙂 

black and white cat sleeping on the back of the settee with Christmas decorations in the background.
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Tales From Mamaville

Debs Random Writings
Sticky Mud and Belly Laughs

Déjà vu

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Last week I was back a the hospital to see a different Doctor. I almost got the times wrong but thankfully I checked at the last minute. I seem to be doing that a lot lately, getting times wrong and missing appointments. Or just simply forgetting to do something that I’d promised to do. Anyway, as usual I left the hospital feeling that it was ‘all in my head.’ Why do they do that, unless you are actually at death’s door Drs just don’t want to listen. I had symptoms of my illness for about three years before I lost the use of my legs, but no-one would listen. What if they had? Would I still be able to walk now? Why does it keep happening to me?

It also surprises me at how little attention my condition warrants from doctors. I mean, I have an ultra rare condition that barely any doctor has heard of. I have been diagnosed by a very reputable neurology consultant, it’s not something I made up. If I was a doctor I’d think, ‘ooh that’s interesting I’ve never heard of that, tell me more.’ But they show so little interest, they don’t even ask how it affects me. I sometimes wonder if they would show more interest if I gave it it’s original name Moersch and Woltman Syndrome, maybe Stiff Person Syndrome sounds a little naff to them. The Doctor I saw was also under the impression that I was still diagnosed as having Transverse Myelitis, maybe he knew what that was.

Grumble over, I am having further tests, just in case. Fingers crossed that the doctor is right and there is nothing to worry about. In the meantime I’m going to assume it’s all in my head, and use my head to stop it!

It Happened Again

On Saturday, me, Graham and the Little Man had to go and see a specialist doctor about our injuries from our car accident a month ago. The girls stayed home with their older siblings. We were at the surgery for about an hour, then did a little shopping before coming home.

Graham bought a packet of peanuts to eat in the car. He said the last time he bought peanuts was when we had our crash. I just had to point out that our crash also happened on a Saturday afternoon and there was just the three of us in the car.

Just a few minutes away from home, Graham stopped by a parked car because there was another car coming up the other way. Then, crash! Someone went straight into the back of us. Again! 

Thankfully, it was not as bad as our last crash and I did not need to be stretchered off in an ambulance. The Little Man was upset but unharmed, so there are always things to be thankful for. Tell that to the car hire company that is loaning us the brand new Mazda while our car is still being repaired from the last crash! 

Busy

As for the rest of the week, I’ve been pretty busy. As well as going out Friday and Saturday, I also had to go out on Monday and today, Tuesday. I think I may need the rest of the week being glued to my settee. That probably won’t happen though because today it’s treatment day so, as long as I avoid the side effects, I’ll probably be feeling pretty good for the next week or so. 

As well as going out I’ve also managed to finish two crochet projects. One is a Christmas present so I can’t show you that. But I’ll show you a pic of my blanket which took me ages. It’s a gorgeous soft wool and I love the colours. I crocheted it in diamonds and then had to sew them all together. It’s the first time I’ve done this type of project and I found it hard work. I am happy with though.

a crochet blanket in red, white and blue diamonds

Debs Random Writings

It’s a Week of New Things

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a purple star with the word, new, in the middle

Last week my word of the week was School as we had found a new school for the Little Man. We went out on Saturday to buy his new uniform and although we got everything we need the day didn’t end well. More about that in a little while. First I want to tell you that the Little Man absolutely loves his new school. He’s made lots of friends already and thinks his teacher is great. In one week I’ve found him keen to read his book just so I can give him his comment in his reading log (he’s never been keen before) and he’s been singing songs to me that he’s learnt. 

He is happy and excited to go to school in the morning and comes home bubbling. I have missed him like crazy but it was certainly the right decision to send him back to school, he is so much brighter.

The Crash

We also have a brand new, I mean, so new it’s only just over a month old, car! It’s a top of the range Mazda with leather seats and so many features, including many safety features. Graham is in love already. BUT, it’s not ours really, it’s a courtesy car while our poor Skoda, Bernard, is being repaired. 

After uniform shopping on Saturday we were involved in a car accident. While waiting to turn right another car ploughed into the back of us at speed. Thankfully the girls were safe at home with their big sister so there were only three of us in the car.

Graham was fine at the time but has since become stiff and sore from whiplash and is suffering from recurring headaches. The Little Man was hysterical, but it was more fright than anything. He hit is head off my seat, despite being strapped in. He has bruising on both his legs and also has a stiff neck and shoulders. 

I don’t even remember what happened but I remembered seeing blood from my foot and my shoe was missing. My back was really hurting and I’d gone stiff in spasm from my condition. I can only surmise that the shock of the accident caused my startle reflex to set in and I somehow managed to get pretty bashed. I was taken to Accident and Emergency by ambulance, but my experience at the hospital was not good. The Dr had no idea how to treat me because my stiffness meant he couldn’t make his usual examinations, after poking my back and sending me into a massive spasm again. It’s difficult to examine someone for spinal injuries when they already have a knackered spine. I can’t blame him for not knowing what to do, nobody ever knows how to deal with me.

I left hospital unable to weight bear on my left side and my back has been hurting like crazy. But, it is slowly getting better so I just need to heal. If it was getting worse I would be worried. About three days after the accident I also suffered from the stiff neck and shoulder pain. My ankle is also swollen, bruised and grazed. But the main thing is, we survived. 

New Plan of Treatment

On Tuesday I was back at the hospital but this time for a scheduled appointment with my consultant. We first discussed the IVIG which I am feeling benefits from now that I’ve been having it for a year. Changing it to every month, rather than every three months, has made a big difference. 

Then we discussed all the new issues I’d been having and he told me that they are all side affects from my medication. I’ve been taking this medication for three years now without side affects, but now that the IVIG is in my system there seems to be a battle going on with the IVIG and my medication. So, the plan is to reduce the medication and adjust the IVIG so that I get the best benefits without the side affects. 

It sounds good to me. I’m quite happy to be pumping less drugs into my body, especially if it gets rid of the side effects.

Other issues I’ve been having can be put down to me lacking in B12 and folate. My medication can stop my body from absorbing these from my food so now I am taking supplements for four months to help. 

I am actually beginning to feel more positive. I know there are other drugs that can be used to help my condition, but as it’s so rare it’s hit and miss as to whether they work. So although, although I’d give anything to take something to make me better, the thought of taking even more drugs was making me feel anxious. I’m so hoping this works out, my consultant seems quite confident it will. 

The Reading Residence Debs Random Writings

Thunder, Hospitals and Holidays

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the storm lighting up the night sky

I Hear Thunder

Wow did we have some storms this weekend. I was woken in the early hours of Sunday morning by the most enormous thunder crash. It’s a good job that storms don’t frighten me, although they do make me wary as I know they can be dangerous. Thankfully, the kids didn’t wake up.

Sunday morning started quite sunny and we thought the storms were long gone, then mid afternoon we could hear rumbling. It was weird, not like normal thunder that comes and goes but a continuous rumble. I wasn’t even sure it was Thunder at first, but then I saw a flash of lightening, and another, and another. Within minutes came the rain and a proper deluge it was, the garden was soon like a pool. It just kept coming and coming, continuous rumbling, constant flashes and so much rain.

There were areas of flooding nearby, even some of the main roads were more like rivers. Living at the bottom of a hill we’ve seen a fair bit of water but the drainage is pretty good around here so it soon disappears again. The water in the garden was almost up to the edge of our patio doors but it didn’t come inside. I think we were lucky.

It was the rumbling that affected me most though, it really didn’t stop for over an hour, just a deep heavy grumbling in the sky, the heavens were certainly annoyed at something!

Hospital

I spent last Thursday at the hospital with my Little Man after an accident at school. He hurt his arm on a radiator and the GP thought he may have fractured the bone. It turned out to be just bruising though. Sadly our day revealed a lot more though, the bullying that has continued for my boy on a daily basis. He is being kicked and punched on a daily basis both in the classroom as well as the playground. This is after us complaining to the school. We are now taking him out of school on a concern for welfare. In fact we are considering not sending him back at all. You can read the full story here on my post last week.

Also on the subject of hospital, I’m off for my IVIG treatment today. I’m hoping it gives me a little more relief for the rest of this week. I don’t think one days treatment is helping much though, I really need to talk to my consultant about alternatives.

Whitsun

This week is the Whitsun holiday from school and it feels kind of strange because for the past four years we have taken a holiday. This year, however, we have decided to take our holiday in August. It feels like a long wait, but at least we will be going for a full week instead of a midweek break.

I am hoping that we can fit in a couple of days out this week but it will probably be nearer the weekend. I’m not even sure where we will go yet but Star wants to go to the Nature Centre. We’ve been there loads of times before but she’s happier going somewhere familiar.

I want to go to a National Trust Property, there are still a few nearby that we’ve not visited yet. Maybe we can fit in both.

What have you been up to this week?

 

Debs Random Writings

 

 

Hospital, Transport, School and Other News!

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Hospital

I’m off to hospital today, I’m hoping there will be a few more people than yesterday on the day ward.

a hospital day ward with empty chairs

It’s not that I mind being on my own, but I have made quite a few nice friends on this ward.

I only have two days to do this time, It used to be a whole week but that was every three months. Now I get my IVIG every month and I think it’s making a difference. The last one only wore off towards the end of last week. I just have to remember to keep hydrated and ward off those horrid migraines.

Transport

Last week I went to Naidex44 which is a disability show at the National Exhibition Centre in Birmingham. I got to try out lots of different wheelchairs, but I’m still not sure what to save up for. I know which one I’d really like but it’s out of my price range.

Graham also had a look at some cars. I was interested in the Wheelchair Accessible Vehicles but Graham was not so keen. At least if we had one I would be able to have a more robust wheelchair that didn’t need to be folded to go in the boot!

School

We had a meeting at the school about the Little Man and they are hopeful that they can sort things out. He’s already coming home a little happier and not refusing to go to school. We will have another meeting next week to see how things are going.

This evening, Graham is off to Star’s school for a talk about her trip to France next month. Star is really excited about it but I’m sure the nerves will kick in when it gets closer. I am nervous already, but I need to allow my children to experience new things and try not to worry.

Boo is also off on a residential next month but she’s staying in this country at least. I’m not so worried about her, she can be fickle but she is so much more independent than Star.

 

In other news

I have a frozen shoulder and it’s been giving me some real trouble lately, in fact I barely slept last night because of the pain. I’ve tried painkiller, a pain relief cream, massage from my shoulder massager (which is rather lovely) and some gentle exercises. It’s starting to ease off a little now but I’ve heard it can take years to heal.

I’m also having a problem with the stairs in my house. I have two handrails which I use to pull myself up and support myself down. However, twice in the last week I’ve been unable to walk down the stairs, my legs have just given up on me. I have tried getting down on my bottom but that’s one of the places I get a lot of pain. So I’ve ended up having to go back up, with help, and go to bed to rest. It’s really annoying and pretty scary.

To keep myself busy I’ve been reading a lot and listening to my audio books. I’ll be writing some reviews soon. I’ve also been crocheting a lot and I’ve completed two more squares of my Crochet Along blanket and I’ve started on making an arctic fox for Star. This will be my third animal creation and each one is getting a little better as I get to grips with the techniques. Can you believe, I’ve just realised that I have sewn the arms wrong on the last two, I did wonder why they were too floppy!

How has your week been? Have you read any good books lately, or made anything creative?

 

Debs Random Writings