Health Update – Is it Lupus?

I mentioned in my last post that I was having a funny year health wise, well that statement couldn’t have been more accurate(my last post was 3 months ago…no blog awards for me!!). I went for a colonoscopy in August, and I had myself prepared to be told there was something wrong, and in a way I was looking forward to finally having the answers to why I felt so unwell and had a complete lack of energy. I was looking forward to being told something was wrong, strange that! but I spent so long beating myself up over not being able to get healthy and loss weight and I was so sure there had to be more to it. My results came back all clear!! I was totally confused with how I felt, I was happy there was nothing wrong, I was upset that nothing was wrong! Was it all in my head, was I just lazy, am I just a failure that can’t seem to sort my life out!! I was in a head spin and didn’t know what to do, but the consultant discharged me and recommended I get allergy testing done and go see a dietitian, so at least I had a next step. I ignored the comment he made about my weight being the cause of inflammation markers in my blood, at least I pretend to ignore it! I concentrated on getting allergy testing done, maybe its just allergies and once I eliminate what ever I am allergic to I will feel better and I finally be able to lose the weight!

Thank goodness I had a great GP, in fact I have only been with this GP 5 months and he has done more for me than any other doctor ever has. I have been going the doctors for years over various things, heart palpitations, stomach issues, sinus issues, no sense of smell, swollen glands and joints, unexplained anxiety!! But this GP seemed to listen to me, and before I curse all other GPs, in fairness they didn’t have much grounds to go on, but my blood tests this year were showing something was wrong and I think that is why this GP really listened, because he had medical backup for grounds to dig a little deeper, its why he sent me for the colonoscopy in the first place. So when I went back with the colonoscopy results he agreed to do allergy testing and also said there is a few other tests he can do to check for any other illness. He didn’t go into much detail and I didn’t ask, I lost count of how many vials of blood were taken but again I had a feeling I might get answers and I started feeling hopeful again.

These tests took a few weeks to come back, but I had a trip to Orlando planned in the mean time, a few days before a went I got a call from the GP office to say I needed to come in for B12 injections because it was very low. Could this be the answer! Lack of B12 could really explain everything I was experiencing, lack of motivation, concentration, apathy, fatigue, tingling in my arms, muscle weakness, anxiety, I ticked all the boxes!! Was the answer that simple, I was low in vitamins! I came in for my first 2 injections and was to get my next 4 when I came home from Orlando. The rest of my blood tests came in the day I flew out, but I purposely decided not to get the results until I came back. It was holiday time and everything else could wait.

I came home and booked in my next B12 injection. This was 4 weeks ago now! Mid October. I was nervous going to that appointment because I was going to ask for the rest of the results and I think maybe my intuition knew something was going to be said that day. At first it was all good news, I wasn’t allergic to anything! Not even dust…which is a good thing with my house!!! But then it came to the antibody testing and a positive result showed up for whats called Anti SM antibody, with an comment underneath to say this test is highly specific to SLE. I didn’t know what the meant and nurse wasn’t willing to discuss it, which I can understand, she wanted me to talk to the doctor. So I went back the next day to talk to him, of course I had spent the whole night googling everything so when he told me he thinks I have Lupus I wasn’t one bit surprised!! I was being referred to rheumatology to be reviewed and only they can make an official diagnoses. I think I cried for a week straight. If he had of told me I had Crohns, Colities or Celiac disease I would have been so prepared, but I never once looked at Lupus (until that night of course). It was one of those things that when I searched symptoms it was always mentioned, but I never clicked on it. I never considered it. And I guess that’s why they tell you not to google, because you really don’t know until you go and get tests done.

It was shock and relief that I think caused the emotions. I now knew that it wasn’t all in my head, that I wasn’t a failure and I didn’t need to be so hard on myself anymore. When I am too exhausted to clean the house, I let myself do the bare minimum now, rather than calling myself a lazy lump (that’s putting it nicely) and pushing myself until I was near breaking point. Don’t get me wrong I still push myself, partly because I hate a unclean house, and partly because I feel like I still need to push myself to keep up some level of normality. But I am kinder to myself now and I’ve actually starting talking about the pain and lack of energy I feel. As funny as that sounds, I didn’t want to say it out loud to people for fear they would also class me as a lazy lump and worse than that, that I was lazy because I was fat (yes I said the F word!!). Now I have reason to say I need a rest. Granted I am not officially diagnosed yet and there is every possibility the consultant will review my case and say it is not the case, but my from what my GPs says and a relative that is a doctor looked at my tests and both seem to think it is Lupus so that is what I have to go on.

Unfortunately with the nature of Rheumatology, there isn’t a tone of specialists in Ireland, meaning there is a wait to see these guys. And even going private I will be waiting until January until I get in front of a consultant. In the mean time I am going for a sleep study at the end of this month that I have been waiting 2 and a half years for…which I will do a separate post on the ins and outs of that! I have an MRI and scope mid December to see why I have no smell and a follow on from the sleep study!! And sure then its Christmas and New Years so it will be no time at all before I am in with the Rheumatologist. One thing for sure, whatever is going on I will never give up until I am down to a weight I am happy with, which coming from someone who put on a stone and a half in 2018 seems like empty vessels of promises, at least I feel like that’s how it sounds, and I don’t want to say it’s been a tough year because I feel like I am making excuses, but then again am I being too hard on myself…or do I need to be hard on myself to snap out of it and be healthy.. if I figure it all out I will let you know!!

Good Health to all

Sharon xx

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