Tag Archives: lupus

The Spoon Theory

I stumbled across The Spoon Theory and it is such a wonderful way to explain dealing with my Auto-Immune issues.  I don’t think mine are QUITE as severe as hers, but fairly close.

So many people don’t get that I am sick because apart from looking pale at times, I don’t really look sick, and it is really hard to explain. I have on countless occasions knocked back a social event because I just wasn’t feeling up to it. I feel at my worst in the mornings after I get up and in the evenings after work and while somewhat better during the day, if I overdo things I pay for it later.

Now most of the time, if I start to feel it I just stop as I know it will only get worse later if I push through it. Sometimes (like at work) I have to do it anyway because it has to get done and I do pay for it later.

Anyway, enough rambling, I thought this was a great way to explain things. Have a read…

The Spoon Theory by by Christine Miserandino www.butyoudontlooksick.com

A Couple of Layouts

Dean did his first Half Marathon last weekend which I thought was pretty impressive! I have done a layout with pics of him crossing the finish line. Poor fella was absolutely knackered, but hammed it up for the finish.

Here is one of me. I had an interview with SBE as I am designer of the month this month there. (25% off selected products!) They asked for a layout of me and I hadn’t done one for a while, so here is my latest about me layout.

Both of these layouts were done with Funkified, now available at DigiscrapArt.com

On the health front, I had an appointment with a rheumatologist earlier this month. He doesn’t think it is lupus as he said I don’t have enough of the symptoms, however at this stage he thinks the most likely diagnosis is Mixed Connective Tissue Disease, which is another auto-immune disorder, not necessarily much better. (Lupus is a connective tissue disease) I have to have a bunch more blood tests done, many of which I haven’t had done before and see him again in 6wks so STILL no answers which I find very frustrating!

Mixed connective tissue disease from what i have read is an auto-immune disorder with a combination of symptoms from various connective tissue diseases such as lupus, rheumatoid arthritus, scleroderma and polymoysitis. Apparently it can develop into one or more of the other connective tissue diseases later on in the progression of the disease.

Anyway, there are a huge number of blood tests I have to have done so hopefully I will have a more firm diagnosis in 6wks time. At least we are getting closer to finding out what is wrong. I have been a fair bit better the last few days, so I am waiting till I have another flare before I have the blood tests done.

 

 

House Plans & General Update

It is official (and has been for a few weeks now) our block of land is now officially ours, wahoo! :-)

Our plan has now been drawn up properly so we just need to get a few things finalised before we can start building.

Dean has been training to do a Tri-athalon in April with one of the partners at work. Dean last weekend competed in the Bridge to Brisbane, doing the 10km run. He is doing so well with his training and is really enjoying his increased fitness. He has bought a new bike to replace is 20yr old dinosaur and has started riding as well.

I am not doing as great health wise! My fevers are continuing on a daily basis, as is my anemia, insomnia, exhaustion, and now there are new symptoms adding into the mix. I have a whole host of symptoms that have been going on for some time, including joint pain which up until recently has been pretty managable. However in the last 6mths or so I have been getting really severe bouts of joint pain which has given me a whole new appreciation for what it feels like to suffer from arthritus. Nurophen just isn’t cutting it anymore and I have had to start using stronger anti-inflamitaries. There was one night a few weeks ago, where I was in that much pain that I was in tears.. and it takes a LOT to get me crying. The last time I remember crying due to pain was when I had gall stones.

Now that I have started the heavier anti-inflamitories it is a lot more managable but my joints remain very weak and do get sore if I strain them too much. As well as the increased joint pain I have started getting a lot of lymph node swelling. It started out with just one here and there but over the past 2 or so weeks I have had continual swelling in several lymph nodes. At one point I was sure they were all swollen, I had no idea there were so many lymph nodes in the body! I sure do now!

I have had more blood tests than I can count and there is no sign of lymphoma or anything hideous like that, but my ESR levels are raised, and my platelets are low.

I went to see an endocrinologist last week as my gp thought some of my symptoms might be related to PCOS, but he confirmed that they weren’t (as I suspected) and also made the suggestion that he thought my symptoms were consistent with Lupus. When he mentioned this I told him I have suspected they might be as I have been researching all my symptoms and Lupus fits. As much as I don’t want Lupus, at this point I just want an answer, this has been going on for 2 years almost, and I want to know what is going on so that it can be treated and we know where we are heading.

The endocrinologist wants me to see a Rheumatologist, so after a bit of searching I found a good one who doesn’t have a 6mth wait. I have an appointment on the 14th of October, and I am hanging for it, because my symptoms just seem to be getting worse and worse lately. I am finding it increasingly difficult to get through a working week without needing a day off to recouperate a little. I am spending my weekends resting as much as I can so as to cope with the next week of work. It just isn’t fair on me, Dean or the kids as poor Dean is lumped with the bulk of the household duties because I am too tired to manage much. I try and do as much as I can when my energy levels are better than usual, but that often doesn’t go very far.

It is the wierdest form of tiredness I have ever experienced. When it is really bad, it feels like my body ways a tonne and lifting an arm feels like lifting boxes of weight. Moving from one room to another requires rest at the other end, yes you heard right, REST! :-( Thankfully I have only experienced this a few times, but I can feel myself heading that way when I overdo things. The sad part is I am not even exaggerating!

I haven’t done any designing in the last few weeks since I have been more tired than usual. The mojo just doesn’t flow when I am this tired.

Anyway, at this point Oct 14 can’t come quick enough..I just hope the Rheumatologist has some answers and a decent treatment plan for me. As my brother so eloquently put it a few days ago, at least I can eat at Sizzlers! LOL