It's been a while ....

Good morning Bleeps.

It's been a while eh? I have taken a step back from my blog because I felt like I was going around in circles. It still does in some ways because I am none the wiser and no better off but today I decided to talk it out as I really need to offload. I have this need to write down how I feel but that is confused with a feeling of wanting to retreat into myself and hide away from people and the world, it is a weird old conundrum.

Well, the last time we spoke I think I had been to the Urologist and he was going to run a test where they would check my kidney function. I had that done in July (with the dye running through my kidneys to track how they work after filling me with water and then a diuretic) and the Urologist told me that unless they found something to worry about he would just write to me with a letter of discharge. I already know I have a shrivelled kidney that 14 years ago was functioning just over the level where they remove it but I haven't been under the care of any Docs since or had any follow ups - not sure why?

At the beginning of last month (Aug) I was hit with an awful UTI and so I called my Urologist's secretary to see if my results were back as I was worried about the pain in my right side/back too in case the UTI was affecting my already dodgy kidney. Her response was that my results were back and she was about to write me a letter. I asked if I could get any feedback over the phone but of course I couldn't, I mean it is only MY body right? It is only MY health but heaven forbid I am given any information about the test, I have to sit and wait for the "system", which in this case was waiting for her to type up a letter and send it by second class post! A week later I got my letter, except it wasnt a letter, it was an appointment for October to come back.

I will admit that it was a bit of a surprise as I honestly was just expecting to get a letter saying there was no change and have a nice day. To get an appointment means he wants to see me, to discuss the results. Does this mean that they need to do something about this kidney? Finally?! If so, does this mean I wont be in pain in my side/back any more? I can only dream of that at this point.

Last night I was hit with the familiar feelings of another UTI (my second in as many months) and this morning I am in agony with the addition of the familiar back pain. Oh the joy!

I have however been Googling (Dr. Google is more helpful than anyone else has been so far) and I have come across some very interesting information.

I have read about some symptoms caused by poorly kidneys (or CKD) on this website as well as others and I am interested that unwell kidneys can cause symptoms such as:

high blood pressure - I have this.

fatigue and weakness - always put this down to chronic fatigue as part of MS - could it be my kidneys?

loss of appetite, nausea; - Yup, all of the time!

itching, easy bruising, and pale skin (from anemia);

shortness of breath from fluid accumulation in the lungs; - I literally am doubled over trying to force air into my lungs on a regular basis and always put this down to MS Hugs.

headaches, numbness in the feet or hands (peripheral neuropathy), disturbed sleep, altered mental status and restless legs syndrome;

It is very easy to get carried away with diagnosing one's self when reading up on stuff like this and with what feels like very little help from my Doctors at this point, I dont have much choice! Unfortunately it can drive you a bit mad because these symptoms cross over so many conditions.

Here I sit, a year on from when I first went to my Doc and had a melt down and begged for help and I am no better off. In fact, I would argue that I feel a hundred times worse and I still have no help, no meds, no answers. I am also running low on faith and hope because it is bloody hard to stay positive when you are peeing razor blades on a regular basis, when you are dizzy and light-headed every single flipping day, when you wake up in the morning feeling like you haven't slept in a month, oh I could go on and on with the symptoms I feel every single bloody day!

My business is going down the drain because although I have my loyal clients, I am struggling to acquire new ones because I am simply too unwell and have no energy. I REFUSE to give up though, I have to get the answers and help that I think I deserve.

It's a lonely old world this one of chronic illness. I will sometimes mention not feeling well but I no longer talk about it much - when I do it feels like it is met with blank stares. It isn't that my family don't care but how bored must they be of hearing it? Probably as much as I am with saying/feeling it!

So, back to the Docs this morning for yet more antibiotics, which I loathe. Another long wait until I see the Urologist in October although you would think I would be used to waiting by now. After all, I saw my Neuro in April (the 12th to be exact) and he ordered more tests (blood as well as more MRI's, CT scans etc) and I am yet to get a follow up appointment for the results. It's like living in a third world country sometimes and it is very depressing!

So enough about me, how are YOU?