New Car!!!

The other day I mentioned that I had some running errands to do and was dreading going because my car doesn’t have air conditioning. I live in Alabama and it is already in the mid 90s most days. Well, guys and gals…I have some good news!

Today I got a new car. Well, a new to me car. I live in the city and needed a small cylinder car that would be good on gas. So today I found a car that is a 4 cylinder, has really cold air conditioning (YAY!), and was checked bumper to bumper by a mechanic for any issues (none were found). I was able to pay for the car in cash (thank you very much M.) and therefore I won’t have to make any more payments on it. It’s perfect!

The car hadn’t been cleaned yet, so M. got his work buddy to clean it out for me (it took hours! It was so dirty!) and now it is in the process of drying out. M. is trying really hard to fix the problems we’ve been having lately. He did good today.

I went to the store and got a cushion for the seat and a holder for my phone so that I can use it hands free for phone calls and GPS navigation.

I am so excited! This means that I no longer have to worry about going to the doctor and being all hot and sweaty by the time I get there. I will be able to visit my sister and niece whenever I want (my old car wouldn’t have made it that far).

Things have really been looking up lately. Here’s to wishing and praying that things continue to go well for me.

Health wise, I’m about the same. Today I was too excited to feel much pain. The adrenalin did a good job of covering it up. Hopefully I will be able to get some sleep tonight. I know this might seem like a silly thing to be so excited about, but I am. YAY ME!

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Medications and Anger

A couple of weeks back when I went tot the doctor for my coughing, he prescribed me this new asthma medicine to take twice a day so that I use my rescue inhaler less. As far as the coughing goes, the new stuff helped the coughs be more productive and I have gotten a bit better. There are a few problems with this medication, though. One, it makes my mouth burn. Rinsing my mouth out after using it has helped some but my tongue still stays pretty sore. Two, I have been having some major anger issues lately that may be caused by the steroids in this medicine.

I am normally an unusually patient person, but lately, the smallest things just set me off. I hate feeling this way. I hate being angry. It usually doesn’t last long, but while it does, the feelings are intense. ┬áLastly, my appetite (which was nonexistent when I went to the doctor) has returned with a vengeance. I stay hungry all the time now.

Have any of you dealt with these issues? The medicine is called Symbicort. If so, were the side effects worth it to you? The doctor offered to switch me to another medicine called advair (I think), but wouldn’t it do the same things if the medicine works in the same way? Any advice you guys can give would be appreciated!

Guest Post: Kate Way

 

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Today was supposed to be the beginning of a new chapter in my life.
Today I was supposed to be having my long awaited surgery and feeling hopeful about the future.
Well today didn’t really work out because today my surgery got cancelled and today I’m upset. And mad. Really mad. So I decided today would be a good day to write about my experiences of chronic illness and having adhesions and the effect it has had on my life. Not to receive pity or sympathetic comments, but because in a situation where I feel completely helpless I feel I have to do something. Because anything feels better than nothing right now.

My nightmare started in Feb 2008 when one Saturday night I arrived to play a DJ set at my usual venue. I was feeling a little fragile as two nights previously I had had a rather ‘late night’ shall we say, at a familiar club in Soho with some friends and was still a little wobbly. Because of this, I didn’t take the pelvic pain I was having too seriously. ‘You must look after yourself better’ I was saying to myself. ‘You’re just hungover still – deal with it.’ I was telling myself. But as I climbed the stairs to the DJ booth I knew something was badly wrong. I felt like my insides were about to pop. It was a hot, sharp, burning, pressing feeling. It took my breath away and I had never felt anything like it. But I knew it was something bad. I played it down for a while, telling anyone who asked I was fine. Someone I worked with asked if I was pregnant, knowing perfectly well I wasn’t, and I said what a hilarious idea that was and we joked and laughed about that for a while. By some miracle and with the help of many squats and awkward crouching positions for the duration, I managed to get through my set. I wasn’t happy with the way I played, it wasn’t technically perfect but the equipment was appalling and I could barely stand up so all things considered it was ok. I managed to get home on the bus and the following day I went to a Boy George concert In Croydon with my friend and the whole night I was in so much pain I had to sit down during the show. That was when I knew it was serious! I do NOT stay seated at gigs! Not EVER! (Unless it’s something jazz like or classical or I’m too drunk to stand up) The hours that followed were awful. I couldn’t turn over in bed, I felt like I had a football inside me and if I could have ripped myself open to get it out I would have. In the morning, in extreme pain, I crawled downstairs to the kitchen where I slumped into a plastic garden chair and my cat stood up on his back legs and placed his chin on my knees in sympathy. My then housemate asked ‘shall I call an ambulance?’ to which the answer was of course ‘Yes.’ In the ambulance the medics kept saying ‘it’s your appendix, it’s your appendix’ which didn’t seem right to me. Many hours sat uncomfortably in a wheelchair in A&E followed, doctors dismissing my pain telling me I just needed to pee (seriously?!) or I just had period pain, or most laughably ‘Maybe you just drank too much pepsi.’ After what felt like an eternity I was taken to a ward where I almost punched a nurse right out as she attempted to help me onto the bed. The pain was terrible and I was not in the mood for ‘just get up on the bed now, dear and everything will be fine’

In the morning I was wheeled down to theatre for surgery where they discovered a huge chocolate cyst the size of a football on my right ovary. It was so big it literally had nowhere to go any more. I also had a smaller orange sized cyst nearby which also had to come out. They were too big to remove laparoscopically so they had to be removed by open surgery. I hadn’t experienced anything like this before so it was all a bit of a blur. I was aware I had put on some weight recently but I just thought I needed to cut down on my beer and stuff. It never occurred to me I had cysts inside. I woke from the anaesthetic talking absolute rubbish and begging for pain relief. Later that day the surgeon came to see me in the ward. ‘You have severe endometriosis and we need to monitor your recovery for a while.’
One week later I was allowed home (in pain and cursing every step I had to walk down to to the taxi which took me home) where I completely underestimated how intense my pain would be. Walking down stairs hurt a lot and on attempting to take some parcels to the post office the following week I thought my insides were gong to burst out. One week later I was back in hospital because my wound would not heal. Every time I stood up, loads of yellow looking fluid poured out. The doctor decided it had not healed properly and I was ordered to return to the ward every day to have the wound packed out until it had healed from the inside.

And then things were pretty much ok for a while. I was back in the gym after 5 weeks. (yeah I know they say 6 but I couldn’t wait any longer) My periods were still seriously bad though but that wasn’t a new thing. Even before I was told I had endometriosis I suspected it. The pain started when I was 12. My mum wrote a letter to my form teacher at school every month explaining that I was off school because my periods were painful, and on my return, as she opened and read the letter, my teacher, in between flicking her brown hair and occasionally spitting on the table, in her Manchester accent would say every time ‘I don’t understand why you have to be off school every time you have your period, Katie. None of the other girls do.’

A couple of years later things didn’t feel quite right. I started to notice that every time I ate food, my stomach would bloat up like a balloon. I felt huge after just a few mouthfuls. But again because my job and my lifestyle involved socialising a lot I thought ‘Maybe I just had one glass of wine too many last night’ This went on for a few years. I kept telling myself that when I got back in the gym and started taking care of myself more these things would improve. I blamed myself for these symptoms and promised myself that I would finally sort myself out and become more healthy. I threw myself into my touring and DJing work because that made me happy and it took my mind off the other things that were happening in my life. I was really starting to get somewhere with it all and I felt like the hard work was starting to pay off. There were a few things I couldn’t explain like the extreme tiredness I experienced after food that would send me to sleep for hours or the terrible stomach pain that wouldn’t ease up but I ignored these things as much as i could because I wanted to get on with things. I threw myself into the gym again, spending an hour every morning on the rowing machine and then going back in the evening for a swim or to a class. I was determined to get fit properly.

At the end of 2012 I knew something was wrong again. Every time I ate any food at all I was knocked out. I had to lay down for ages after. It was a tiredness noone I knew could understand. Friends kept making comments like ‘oh well it could be worse’ or ‘you’ll just have to put up with it’ but that wasn’t helpful. Then the nausea started. Every day when I got up I had to be sick or at least try to. It made no sense at all. I wasn’t doing anything differently so why was I feeling like this? My stomach was huge. I would arrive at venues for gigs and go straight to the toilet to be sick before I had even taken my coat off. I couldn’t work out any more because the nausea was so bad. I had UTI after UTI and I just felt dreadful. Every time I had my period I would be in bed for days and then after that I would have inflammation that would travel up to my rib area for weeks and was very painful. I saw a gynaecologist at the local hospital who eventually referred me for surgery. On the day of the referral I walked into her room in terrible pain and with a shocking migraine and simply said ‘please help me’
So in Feb 2013 I had a diagnostic laparoscopy which showed multiple adhesions in the pelvic area and and several loops of bowel firmly twisted and adhered to my abdominal wall. When I woke up from my surgery i was told there were no nurses or doctors available to come and talk to me about my operation so i would have to go home and call the hospital the following week and ask what happened during surgery. ‘Sorry’ I said ‘but that just isn’t good enough.’ So eventually a nurse came, with coat and scarf on, ready to go home and not really interested in talking to me. She explained the loops of bowel were not separated because the gynaecology department ‘do not deal with bowels.’ So I then had to be referred by my GP to another department to see a consultant about my bowel adhesions. Three months later and still in severe pain I saw a consultant who dismissively sat back in his chair and rubbed his cheek and said ‘well maybe we will just leave it the way it is.’ By this stage I was only able to digest liquid foods so I was furious. A CT scan followed which I had to wait weeks for the results of, and finally I convinced him to refer me for surgery to separate the bowel adhesions. On the day of my surgery the surgeon who I had never met before said ‘oh hello we met before didn’t we?’ I had absolutely never met him before ever. ‘don’t talk to me’ he said ‘and don’t bother to tell me where your pain is because I will see when I look inside.’ This was at 7am. At 1.30pm I was still in the waiting room waiting to go down for surgery and I was horribly dehydrated and my painkillers had worn off.

The surgery happened and I was allowed to go home next day. ‘Great!’ I thought. I was ready to get on with my life. I had an amazing two weeks after my recovery going out for meals and socialising and feeling great. And then the pain came….

Exactly one month after my surgery I was taken back into hospital. I was out of breath and I had the worst pain ever under both ribs and all down my right side. I couldn’t cope any more. I wanted someone to come and take all this pain away so i could get on with things. Many tests followed, none of which were particularly relevant. A CT of the chest just in case I had a blood clot? My pain was not in my chest! I had a vaginal ultrasound which showed a tiny 2cm cyst on my right ovary. I had a gastroscopy which showed severe inflammation and a colonoscopy which showed ulcers in my large intestine. But of course, I already knew that because I was bleeding. Many doctors came to my bedside, on one occasion 8 doctors arrived at once which was extremely humiliating. ‘We have come to the conclusion’ they said ‘that this tiny 2cm cyst is the cause of all your troubles.’ ‘Also you have severe adhesions again.’ ‘and take painkillers for your ulcers’ I was so furious I had a bit of a strop and pulled my bedcovers over my face and refused to speak to them any more.

‘What can be done about this pain?’ I asked them later.
‘Nothing’ the surgeon quipped. ‘Take some paracetamol’
The night that followed was the worst. The pain was so bad I just wanted out. It was too much and the nurses on the ward had already told me that they were too busy to attend to me and not to press the buzzer if I was in pain. In all my 36 years and of all the difficult things I have experienced in my life I can honestly say that was the worst week of my life.

I left the hospital still in pain and disgusted. I then started the long painful procedure of getting referred to a different hospital. That was in August. I made many trips to A&E in desperation begging for pain relief. I also had acupuncture and saw a nutritionalist in the hope of improving my general wellbeing. I just had to do something. This didn’t work out because every time I ate I would feel extremely unwell and in September we mutually agreed that my condition was so severe that those treatments could not help me and I was devastated. I had tried so hard and put all of my energy into making myself better and it still hadn’t worked. I just didn’t know where to turn and I felt really alone. In November I saw a consultant who miraculously said ‘ we have to do surgery again because we have no choice’ Unfortunately his referral went missing in the hospital computer system so two months later I paid for a private consultation with the surgeon I was referred to. In January he put me back on his NHS list on the condition that ‘we do more tests’

Two MRI scans followed and several months went by before I could see him again. ‘Nothing shows up on your scans’ he said. Of course they don’t doctor! Adhesions don’t really show up on scans! We ALL know this! ‘I think some of your organs may have fused together but it’s pointless separating them because it will happen again.’ Eventually, after many arguments and a complaint made by me against the hospital he referred me for surgery which has now been cancelled and no further date scheduled as yet.

I just want my life back. My bowels now work slightly better than they did before the last surgery which is amazing but the pain in my abdomen is shocking. I can’t eat anything without pain and my quality of life, my relationships and my work is suffering. I am on Codeine and Tramadol and Tapentadol and Buprenorphine which sometimes helps but mainly makes me sleep too much and leaves me feeling like a complete zombie when I would rather be out with friends. I am trying to work still but it is not always possible. The only time my pain is reduced is when there is no food in my body at all. I will continue to do my best and that is all I can do. I know my adhesions will come back after the next surgery and my life will never be the same but I am ready to try one more time. I am still a real person with real feelings. The worst thing is that I could not have done anything to stop this happening to me and that seems unfair. I have achieved many things in my life and I hope to continue to do so and right now anything I can do to help raise awareness of this awful thing is worth doing. I hate not being out there DJing every weekend and as soon as I can get this under control a bit more I will do my best to get back to it.

If I could say anything to those who have no knowledge of adhesions?

If you don’t know what they are or how they affect people’s lives – don’t ask me ‘Are you feeling any better yet?’ or ‘Are you STILL ill?’ Those comments infuriate me so much. If you want to know how this thing affects people – please do not just look at me with a blank face when I try to explain – Look it up. Please do not doubt my pain because one day it could happen to you. If you are lucky enough to be able to go about your day and eat without pain please do not ever take that for granted, even if it’s just a piece of toast before work or a plate of chips in a service station on the way to a gig. Not even for one day. Incurable means incurable. If you see me out and about it is because I am trying my best to be normal. It does not mean I am ‘better’ or not in pain. It means I am finding the strength to get through my day the best I can and I am extremely proud of the way that I am doing that. I don’t tell people how bad things are sometimes because people are busy and quite frankly nobody wants to hear it. Since I’ve been ill many of my friends have vanished. I no longer have the energy to keep making the effort that I once did and I have had to accept the way that things are.

Oh! That ‘absolute nonsense’ thing that I said when I woke up from my first surgery in 2008 was actually ‘I’ve got to go to work! I’m VERY important you know!’ (whoops that’s anaesthetic for you!) Well maybe I will remind the surgeon of that next time. If it ever gets done that is!

Way To Go GP!

I went today to pick up the disability paperwork from my GP’s office. Surprisingly enough, he filled out all three of the forms!!! So, I can now send off the paperwork to discharge my student loans and I was able to go to the local courthouse and pick up the placards that allow me to park in disabled parking spaces. Yay! I’m so excited and for once am proud of my GP. Now, does that mean that I won’t change doctors later? Not really. I will however wait it out until I get notice back from the government that my student loans have been discharged. Once that happens then I will reconsider whether or not to change doctors. For today, I’m just celebrating a win. It’s been a long time since something good happened and I intend to enjoy the heck out of it!

New Diagnosis

I hope you guys were able to check out my guest post for my friend GreenGrowsDark. If you missed it, here is a quick update:

I finally got in to see a rheumatologist this past week. He and his entire staff were really nice. I got two new diagnosis during that visit. If any of you remember, my GP said that he believed I have fibromyalgia, but he never listed it on my chart as a diagnosis. After talking to the rheumatologist he did confirm Fibro. I’m glad to finally be able to put a name to my symptoms. I now join many of you who deal with this illness and you officially have a new “spoonie” sister.

My second diagnosis was another one that I already believed I had…bursitis. That explains why my hips have been bothering me so much. The Dr. gave me a shot in each hip and so far it is helping. One side did better than the other, but at least the pain has eased up some. I am so grateful that he actually did something for it, not just mentioning it and then letting it go like others have done. Also, he ran bloodwork to check for other disorders like lupus and I suppose I will get those results when I see him again next month.

Lastly, when I saw my GP last week I dropped off some disability paperwork. One was for my school loans and the other was for handicapped plates. His office finally called on Friday to let me know that my paperwork was ready. So, I will go and pick it up on Monday. Keep your fingers crossed that he signed all of it. If he did I am going to send it off and then change to another GP. It is really sad that he is so disinterested in helping me out. I have been telling him for months about my hips hurting and he never offered me any shots for them and when I asked for the referral to the rheumatologist he said no. I ended up having to get the referral from my Ob/Gyn. I’m glad now that I was proactive enough to ask the Ob/Gyn for it instead of admitting defeat. Hopefully I will have better luck with my new GP whoever he may be.

Frustration

I am feeling very frustrated today. Actually, I’ve been this way for a couple of days. My reasons may seem silly to others, but for me they are very real. I’m not going to bore everyone by going into detail, just suffice it to say that relationships have a way of sucking big time. I am seriously considering going back to my sister’s house for another week. I don’t really want to leave the comfort of my home, but it might be worth it to just get away for a while. I felt so much better after my last trip there. It’s definitely something I will be considering.

Today is my bill day. I am exhausted and would give just about anything not to have to run errands today, but run them I must. So, a day of running around in the south without air conditioning in the car is in my immediate future. Can you say HOT! Not to mention that there is no way to look presentable when you have to ride around with the windows open, hair getting all tangled, and then walk into public establishments sweating like a stuffed pig. Arrrggghhh! Sorry guys, just needed to vent. I will make it through today just like I always make it through. Maybe if I just scream really loud it will release some of my frustration…