saz

Yesterday was my breast clinic appointment. The results were all clear. Finally, a result I wanted! I went to see my doctor today and she is going to look into the endometriosis. She says the neuro isn't prepared to see me for the raised intracranial pressure. He is determined his diagnosis of migraine was correct, and won't budge. It is a very sad state of affairs that he won't even discuss it with me. Oh well. Back to the drawing board. I have to find another way to get tested. And I will find it, trust me when I say that. I just HATE doctors...

I can't believe how long it has been since I last checked in. That's probably because I don't have anything to say. Life is kind of stagnant right now. My symptoms are all still there, although slightly less prominant now that I am taking it easy and not working. The problem is that now, new things are starting to show up. I have a lump in my breast I am waiting to have checked. I have a black spot in my vision that the optician is concerned about, though she says my eyes look healthy enough. I am presenting with the symptoms of endometriosis, and need to convince my doc to check that out. I am coming down with infections that are taking weeks to go away. My body isn't responding like it should to sugar- One glass of juice sends my blood sugar high, so I guess I'm becoming insulin resistant. Everytime I go to the doctors, I am bringing up something new. I feel as though they thnk I am a hypochondriach. It's because they don't, or won't recognise that I have an illness that connects all of this, and they are viewing all of these symptoms seperately. It is infuriating. Anyway, on the positive side, I am taking steps to get back into my writing. I've had one of my short stories published this month, and my novel is with a publisher at the minute. Even if they say no, at least I am trying. Life is all about the little victories.

It seems I only ever seem to write anything in here when I'm feeling down, so I thought I would write a quick update today while I am feeling relatively upbeat. Life is ok at the minute. Being off work has allowed me to relax a little, and I feel less tired and worn out than before, although I still have my bad days. It is getting to where I can't walk any distance at all without having to rest a while, and they can't blame the fact that this is getting worse on my weight, because I'm not getting any bigger. It is getting easier to fit my life around the illness though. I accept my limitations, and arrange my activities around these. It just gets harder when the boundaries close in on me. I hope the doctors recognise this before the walls get too close. Anyway, this was supposed to be a positive, upbeat entry, so I will talk more about the good things in my life. Matthew is wonderful. He gets me through from day to day. He looks after me, cares for me and supports me. I also have my mum and my sister who I know love me very much, even if they struggle to understand. I am lucky, I know, to have people in my life who love me unconditionally like this.

I don't know how to feel right now. I got two letters in the post on Wednesday. One was a brown envelope from the hospital, the other was a package. The package turned out to be an announcement that I have won a writing competition and one of my short stories will appear in a book to be published in October. That was fantastic news. The letter was a request from the hospital to go for a second ultrasound of my ovaries on the 7th August. I went for one a few weeks ago, because they were looking for PCOS. They didn't find it, but they did see something else; a growth or something next to my right ovary. The person who did the scan, seeing that I was upset, told me not to worry, and that if the doctor felt there was cause for concern, he would send me back for a second scan. So now I'm going for my second scan... I am also going through major guilt trips at the moment over the fact that I am not working. It really bothers me that I am sitting on my bum all day while my hubby goes out to earn the money, then comes home to look after me, clean the house etc etc. I just want this to be over. I am due to return to see my endo on the 7th August, after the scan. Hopefully then I will begin to get some answers, but I'm not holding out much hope.

It's been a while since I blogged, and a lot has happened since I last did. I went to see a wonderful endo. He was cautious, insisting that Cushing's is rare, and while he does a lot of tests for it, he rarely finds it. Nevertheless, he admits that nothing else explains my illness and there is no point in discussing what else it might be until we are sure it isn't Cushing's. The tests were in May. I'm still waiting for the results... If nothing else, this ordeal is teaching me to be patient. I was signed off work sick on 22nd May, and haven't been back since. It is such a relief. I still feel ill, but I have a little bit of me back. I can smile and laugh again. I have the energy to go for walks, to clean a little, to spend time with Matt. I hadn't realised just how bad things had got until I stopped. When I did, I slept almost non stop for three days! I had no quality of life whatsoever. I know there are people expecting me to return end of August, but I don't see how I can, unless I have found some kind of miracle by then. My next appointment with the endo isn't until 7th August, which seems an age away, but there is nothing to do but wait. I am almost glad it's a little way off if I'm being honest. I'm scared it is Cushing's, I'm scared it isn't. I just don't know what I want any more...

Today is a bad day. I am struggling so much I don't know how much longer I will be able to cope. I am tired, tearful, and so sore everywhere. My head is so painful all the time. I am at work, trying to get through another day, but I don't think I can go on like this. It is just too much. And yet I am afraid of being weak, of giving in, of disappointing the people who believe in me and need to see me coping with this. I don't think anyone really understands how hard it is getting just to get up in the morning. I want to have hope, but it seems to be a rare commodity these days. The only thing left to do is put my faith in God to see me through this. I know he will.

I went to the hospital yesterday for a follow up appointment. It went well. Ok, well is an exaggeration, but at least she didn't tell me I was stupid, or call me a liar. Sure, she implied it, but that's progress!! They are now leaning towards PCOS, with no grounding for it whatsoever, except the weight gain. My periods are normal, I have no unusual hair growth, and I have roughly 20 symptoms that aren't explained by PCOS, but hey, it's more common, and the treatment is simpler, so let's pretend that's what it is. She says I can do another UFC, if only to rule Cushing's out and put my mind at ease. That's so kind of her. She will allow me to pee in a jug for a day! I am so happy. Sorry, do I sound bitter? It's because I am. I hate doctors, and their stupidity and their inability to see what is staring them in the face. The one good thing that came out of the appointment (apart from the jug and her kind permission to pee in it) was the fact that there was a medical student sitting in on the appointment. If the rumours are true, and they do get virtually no training on Cushing's, then I just drastically increased his exposure to it, and maybe one day, when someone like me walks through his door, he'll remember that conversation and say "it's probably PCOS, but maybe we should do a UFC just to be safe."

Ok, so last Thursday was a bit of a nightmare. I woke up feeling rough, my stretch marks were almost invisible, and I my head was killing me. I'm guessing that was a low. Then, around 11am, the stretchmarks suddenly turned DARK purple, and I was suddenly more depressed than Ive felt in a long time. That lasted most of the day, then the mood and the stretchmarks calmed down around tea time. I have to guess from this that these feelings of sadness, isolation and desperation are a symptom of a high. Friday, I was cycling very fast. I was hot, sweaty, tired and irritable one minute, and shaky, jittery and angry/ happy/ sad the next. My head was bad again, had to take twice my usual dose of pain killers. Saturday was another up and down day. The pain, everywhere, was terrible. My moods were all over the place, and I felt sick all day. Sunday, I was sooo tired. I slept on and off until after 5pm. The migraine was terrible. Today, so far, I am irritable, tired, shaky, hot and the migraine is still with me. I hope tomorrow is better.

I have to believe that things are going to get better, because if I don't believe it, I won't be able to get out of bed tomorrow. I am so lucky to have my husband. Matt is the only reason I have coped this long, but I'm not sure I am strong enough to keep going any more. I am amazed and in awe daily of the way so many others deal with this illness and manage to keep a smile on their faces. Matt says I am strong enough to handle whatever life throws at me, after all, God only gives you as much as you can handle in life, but sometimes, on days like today, I just can't make myself believe that. So I will continue to tell myself that it will get better, and maybe tomorrow when the sun comes up, I will believe it.

How much extra is it for postage to the UK? I really want one.

I can't believe how time gets away! It's almost May already and I still haven't read a book my husband got me for Christmas. There just doesn't seem to be enough time to do anything any more. I went to the neurologist this morning. She looked through my file and said, everything has come back normal, so basically, you are a normal person who suffers from migraines. I wish!! Oh well, what did I expect, seriously? On top of that, I feel like I am getting no support from my bosses whatsoever. I am giving them every scrap of energy I have, to the point of not having a life outside of those walls, and still it isn't enough. Something has got to give...

Wow, I went to the docs on Tuesday evening, and she was so kind. She says I tick all the boxes for an endocrine related illness. She is actually taking me seriously!! I've waited so long for this. Yesterday was an ok day. Very tired, but what's new?? Today, I'm having a problem with words, keep saying random things that don't make any sense. It makes me sound like such an idiot. Oh well, I guess it's better than most of the other symptoms. Anyway, it's almost Easter, yay! So I am going to choose to be happy and jolly today, and fight through these feelings of achiness and fatigue. I will smile, I will be happy, I will...

I am having the worst day. I am so angry at everything. My colleague, who is actually very sweet, is in serious danger of getting slapped if she looks at me again, and I want to SCREAM. This is awful. I don't want to feel like this. I feel like I have lost all control of my emotions. I have been trying for a week to get an appointment with my doctor, but I still haven't managed to get one. They don't seem to understand that this is important. WHY WON'T THEY HELP ME???? I think I'm going to phone up tonight and tell them it's an emergency. That ought to work (I hope).

Ok, so after a couple of throw-myself-off-a-bridge days, my weekend was surprisingly good. Saturday was the first day in weeks that I've had enough energy to do anything around the house. I got up early, cleaned, tidied, and cleared out my wardrobe. That was a huge job. I have put all the clothes I used to wear before I got ill away in a suitcase, to be brought out when I am back to my old self. It WILL happen. Then I slept on the sofa for half the day. On Sunday I slept in late and got woken up by Matthew bringing me breakfast in bed. He really is the perfect man. Then we went into town to see Ice Age 2 in the afternon. By last night, I was starting to feel pretty awful again, but at least I got a couple of half decent days.

I am so miserable. I am having another really awful day; tired, weak, fed up, and I've noticed some rather gross stretch marks on my calves Yuck!! On top of this, my bosses have told me I can't reduce my hours at work, so I'm not sure how I am going to cope, and now I've just had the results of my first UFC back, and they are totally normal. I know I'm not the first person in the world this has happened to, and I shouldn't be feeling so sorry for myself, but I just can't take this today. I feel like I am drowning.

This has been one very long and very miserable day. I got up at the same time I do every day, but managed to take so long getting ready that by the time I left the house, I was running late. I had to power walk the quarter of a mile or whatever the distance is between my house and work, and by the time I got there, I was dead on my feet. I am so tired, my finger joints hurt, my head is killing me, and all I want to do is lie down in a dark room and cry. Will this ever end? The consultant's secretary called and spoke to my hubby yesterday, wanting to know what results I was waiting for!?! He told her and she said she would post them out. I think I'm getting pretty anxious about that. My whole family are planning to decide whether or not they believe me about my illness based on these results. No matter how many times I tell them that one test can't really tell us anything! If it comes back normal, I don't know what I will do. I am such a moaning cow, aren't I? Anyway, it's Thursday, so we visit hubby's Gran tonight. I love her to bits, so that is one thing to look forward to at least.