Tag Archives: Autoimmune

Bit of a health update

I haven’t posted anything on my health for a while so I thought I would post an update on how things are going with my health.

I am still in the process of reducing my prednisone dosage which is knocking me around a fair bit.  Every time I reduce my dosage even by as little as 1mg, I get lots of facial and neck swelling which restricts my breathing a little and makes me snore! I have never snored in my life unless I have had a cold. I think Dean secretly enjoys that I am snoring for once because it is normally me who is waking him up and telling him to roll over because he is snoring and keeping me awake.

One of the first time I reduced my dosage the swelling around my neck was that bad that I woke up gasping for breath. Off to my gp I went and she ordered a scan of my thyroid which came up clear. It turns out the swelling happens every time I reduce my dosage but it seems to be less and less severe as my dosage decreases.

Each time I reduce my dose I also experience a flare up of symptoms. If it coincides with a change in weather it seems to be twice as bad. The last flare was over the Easter break. Easter Saturday I had three naps in one day and was STILL tired! Dean said you could see in my face how tired I was. I still needed a nap again on Sunday and thankfully Monday I got through the whole day without one. Wahoo! I guess I should be thankful it happened during my days off work so I didn’t need to use up more of my nearly non existant sick days!

I have been working through lunch breaks at work so that I have a bit of extra time up my sleeve for such occasions as I am constantly running out of sick days.

I was hoping to get two kits done over the Easter break but because I was so crook ( joint pain was really bad too) I only manged to do one on Monday when I was feeling a fair bit better. When I am having a flare I have trouble concentrating and focusing on anything so that is not great for the designing mojo!

I am down to 10mg/day of the prednisone now as of today, so am expecting another flare by the weekend. I am trying to get off the prednisone as soon as I can because I think I have gained about 10kg’s now on it which is scaring me silly. I so do not need any more extra weight! I am running out of clothes that fit and do not want to buy any bigger sizes! I hope I will be able to loose it all ok once I am off the prednisone. Fingers crossed that once I am off it I do not revert back to my previous symptoms making it impossible to do any excercise. Fingers crossed that by the time I am off the prednisone the plaquenil will start to kick in and I will start getting better again!

I hope that the prednisone weight is not too hard to loose once I am off it. Wish me luck, I think I will need it!

Christmas is coming! & update

Wow Christmas is coming way to fast, I just can’t keep up with the pace! Work is super busy and there is tons of stuff to do at home before Christmas, we have yet to put up the tree and finish buying presents. I still haven’t taken the photos for our Christmas cards, let alone sent them, they are looking like they are going to be late again this year!

I had my appointment with the rhematologist on Tuesday and unfortunately I STILL have no clear answers. My blood work only showed inflamation but no clear signs of exactly what the problem is. The doctor said I could have any of the autoimmune diseases, including Lupus, Scheroderma, Rheumatoid Arthritus, Mixed Connective Tissue Disease or even Still’s Disease which I think is also an Autoimmune Disease. He said he just can’t fit me into a neat little box.

From what I have read and heard Auto Immune Diseases are notoriously difficult to diagnose and I have heard many stories of it taking 5-10 years to get a diagnosis. I am thinking that as the disease progresses it will probably become more clear.

He offered to try treating it with prednisone if I wanted to and in a way tried to talk me out of it, but when he asked me what I thought I explained it is getting harder and harder to get through the working week and that it is effecting my work, and he said alright I think we should do it then. Prednisone is used as a treatment for all of the above diseases, so here’s hoping it will help. It has a lot of nasty side effects so it is going to be a see what happens kind of deal.

I started the medication on Tuesday night and I think I am noticing a slight improvement already. Fingers crossed it continues and the side effects aren’t too bad. I am on 25mg/day for the next month, then I have to reduce the dose by 1/4 of a tablet for the next month and another quarter the month after that, after which I have to go and see the rheumatologist again. He even gave me his email address which I have never had a doctor do before in case I have any problems with the Prednisone. So it is good to know I can easily contact him if I do experience any of the bad side effects.

Dean is still doing his triathalon training and is well and truely hooked. He is looking fitter and fitter every day and loosing some of his ‘beer’ belly. (not that he ever drinks much beer!) I am so proud of how much he is putting into it and how well he is doing, and how much his self confidence has improved since he started doing it. It really is great to see! Unfortunately it is a rather expensive hobby to get all the gear and to enter the comps, but he is enjoying it and it does him lots of good so you can’t begrudge him that at all!

Kyan has been very cranky the last few months, lots of tantrums and testing the boundries. Dean had a parent teacher interview at his kindy (I couldn’t make it because I am too busy at work) and they had noticed a change as well. They said he has been getting a bit bored in his current room and he is very ready to move up to the preschool room where it is more structured and they do a lot more ‘schooling’ type activities. They started transitioning him this week. I think it will do him good and be a bit more of a challenge for him. I think he is turning into a smart little cookie with a lot of ‘street smarts’. He is very observant and will often remember where things are when we can’t find them. I have been thinking that his crankyness is a combination of loosing his day naps, getting tired towards the end of the year, and testing the boundries a little as he gets a bit older. Fingers crossed it ends soon because his tantrums have been rather nasty and very testing!

Jasmine remains her consistent smart, well behaved and cheerful self, in between virus’s and illnesses that is. She has had her fair run of illness this year, her most recent an ear infection which she hasn’t had for quite some time. She is currently a bit wingy about all the mozzies that have come out in force thanks to our recent rain but apart from that she is doing well. Must dig out that mozzie zapper and a website addy I have yet to check out! I can’t wait till we have fly screens in the new house! She is enjoying her last weeks of year 1 and can’t wait to go to grade two! She still loves learning, reading and writing and appears to be a bit of a wizz at maths. She still loves her art and craft and being creative. I don’t think that will ever change since it is in her blood from both sides of the family!

The house plans are going well. We are in the final stages before it goes to council certification. We took a bit long over a few things which has delayed our starting date.  We are just waiting on one little thing and they will put it in for approval. Then hopefully in the new year building will start! YEAH! We have done all our selections and Dean is currently checking them all with all the suppliers to make sure everything is correct. Good thing he did because there were a couple of changes a few of them hadn’t made! It will be so exciting when building starts, I will be sure it innundate this blog with photos when it does! The current plan is that we should be able to move in in May, right at the start of winter. I am hanging for that spa bath to sooth my aching bones, fingers crossed there will be enough water in the tank to use it!

We have had lots of rain lately which is great, our dams are still critically low however with the rain only enough to sustain the city for a few more months. As I type however I can hear a storm brewing so heres hoping for a nice big downpour! Fingers crossed we continue to get enough rain until they finish the pipeline that will connect us to the Brisbane supply.

I am still doing some designing, I love it so much as it really satisfies my creative urges. I would love dearly to do it full time. We can only dream right?? I am doing a contest at the moment so haven’t been putting out much but the kits I have been working on should be available soon, with any luck!

Wow what a book! Ok, lots to do I had better get too it!