For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Saturday, 28 June 2014

Suffer, Survive, Thrive.

Its been a bit of a rollercoaster these last weeks, both physically and emotionally. The first thing was going to see the doctor on Monday as the antibiotics I have been using weren't really doing a lot at the time, so we switched over to Ciprofloxacin and the doctor said she would phone my consultant teams and find out what the best thing for me would be next. My aminophylline level was at 7.9 last time it was checked (which was 4 hours after the regular dose in the morning) so we may have a margin in which we can increase the Phyllocontin with (this is the first time in years my aminophylline has been measured so that is a concern as it should be reviewed every 6 months...). Also was the concern that my WBC is still incredibly high and I am generally not very well at all. I am still coughing and I am still very feverish, the bottoms of my lungs seem to be taking the brunt of it all and I am exhausted!!

Another blood test had been arranged (it was supposed to be Friday but there would have been no way to get the blood to the labs on a Friday evening) and we want to check all the bases as I have some symptoms of an underactive thyroid. If this is the case then it would explain a lot of my recent problems and it is a very easily treated problem if that is the case. This could have been missed for a long time and the symptoms were just dismissed as effects of other medications I use (steroids can be prolific for causing all kinds of problems) and as a result were left to run amok in my body for quite some time. I have a particular problem with my immune system attacking itself rather than anything that has made its way in to my system, so when we get the results back probably the week after next, after my o2 assessment which I am worried about (although I think I know deep down it's going to be fine and I won't have to worry really), and then we can go from there. Until then, I have to just try and try and get rid of the chest infection I have had for so long now.

The other problem we are worried about is that from nowhere, I have developed loads of strange bruiselike marks on my body. I haven't been knocking myself but we have watched them appear from nowhere. When we were at the Court on Wednesday, I watched one appear on my arm just before I went in to the room. Hopefully it could be down to one or two small issues which are easy to sort out and nothing too sinister. If it needs to happen, the doctor has said that she will make sure that I am admitted under the right consultant if I had to go to the hospital. Fingers crossed though that it won't come to it, but realistically, I have to be prepared for anything.

I mentioned briefly that I was at the Courts on Wednesday. No, I am not in any trouble!! I was a witness to a rather horrible event that happened in the flat above me. I can't really discuss the happenings of the case or the evidence I had to give, but the up side was that I did see Becky again! And we had a long, happy chatter. It was like she had never even been away and we are making some plans, but again, I won't say much here as well, the best kind of prize is a surprise. I've always felt like I can talk to Becky about things when they bother me and as much as I love Natt and Tash, there are some things that I don't really feel like I can talk to them about. One of the biggest things that she noticed actually was how much better I am now I have my oxygen, before she left, I was barely able to say much and was almost always asleep. So it makes a change to be awake for once!

I am really hoping that these bloods show something that can be put right and even if I have two thoughts about what that may take. I am hoping that we can get to the bottom of it all because even the doctors agree that this really isn't fair on me at all. I've been going around in circles and things haven't really improved or if they have, they have quickly dropped again and right now I am really having to push myself further to do routine things like dressing or eating. I went for my chest X-ray today. The shadow is still there and its taken up a chunk of my right lung again so that's still full of infection and inflammation (which explains why I feel so poorly still) and we need to see a consultant again soon because we desperately need to get this back on some kind of even keel and maybe reduce my body's need for oxygen and steroids because frankly, I want to be able to do things again and live normally.

I'm not ready to accept that for now, all they can offer me is palliative care. Its ironic, the amount of times I tried to end my life, I'm now fighting tooth and nail to stay alive. It comes back to an album my first boyfriend and I tried to help promote back 2004. 10 years and the name of the album has stayed with me. It was called "Suffer, Survive." and that is kind of what I do. I suffer sometimes and physically struggle to keep at it, but the other side of it is that I am surviving. I know people who would use a situation like mine to gain constant sympathy and "awww poor old you...." And it makes me physically ill because that is one thing I don't need and certainly don't want. I need to find out how to make my life count and I want to survive long enough that I can see what the future holds. If it was pity I want, I'd not be fighting so hard against something I hate. Maybe one day, there could be a cure?

Wendy xx

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