Happy Again

So, before I tell you guys why I’m so happy, I am going to update you a bit on my medical issues.

I went back to the rheumatologist and they re-did my bloodwork because last time it showed high levels of inflammation. Luckily though, it was negative for lupus and the other diseases they are able to test for. The results of the new bloodwork still showed high levels of inflammation, so the doctor started me on a medicine called Plaquinil. I will take it once a day and they will recheck my levels at my next visit. I am excited about this medicine because I am unable to take medicines from the NSAID family which is what they usually use for inflammation. I didn’t know there were other options. The only thing is that I have to make sure to get my eyes checked every year while on this medicine.

Secondly, I have had a really bad cough for a while now. After starting a new medicine called Symbicort the cough still hasn’t gone away. So the other day the doctor gave me a shot of a steroid and prescribed a course of Prednisone to help clear out my lungs.

This is where we get to the happy part. Somewhere between the Prednisone, my thyroid medicine and the Plaquinil, I have actually had ENERGY! For someone with fibromyalgia and chronic pain, this is a big thing. I am always extremely fatigued, so having a bit of energy has felt great… I feel almost normal. It is so exciting! Add to that the fact that it has actually been peaceful in my home for about a week and that makes one happy Joy. If it could only be this stress-free all the time! Lastly, I treated myself to a pedicure the other day so I have beautiful feet! I am thoroughly enjoying the peace, my energy, and my pedicure.

Too bad I can’t stay on this medicine all the time. That would be nice. It has been so long since I have felt normal. Don’t get me wrong, I still have the chronic pain, but my energy level is definitely better. I only have a few days left of the Prednisone, so it is very possible that my newfound energy stops with it. However, I intend to enjoy every minute of this feeling. It’s been a long time since I’ve felt this good, so I will cherish every minute of it. Don’t worry, though. I am trying to pace myself to where I won’t overdo it. Today has been a day of rest except for a quick trip to the store.

I hope all of you are as happy as I am right now. Oh, and do something nice for yourself. You’ll be amazed at how great it makes you feel!

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A Veteran with Cluster Headaches About to Lose his Home

 

 

In honor of migraine awareness month, let’s help out a U.S. Veteran and migraine sufferer. Read the entire article for more details.

Migraine Discussions

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If you read the news you know the Veterans Association has been under a lot of scrutiny lately for how it has been operating and taking care of our veterans. It’s so bad the head of the VA is actually fighting against requests for him to resign which I think he should immediately. The way our veterans with chronic illness, especially neurological disorders gained during their tours of duty is egregious. There’s just no way to justify the neurological stigma that has seemingly penetrated the VA!

I want to tell you a story today in honor of Migraine Headache Awareness Month and our veterans about the VA’s ignorance. You might know Cluster headache and Migraine advocate John Beebee if you’ve ever been to Headache on the Hill. He can often be found laughing and doling out hugs amongst his friends in the Cluster Busters advocacy group which I was a…

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My Migraine Story

In honor of Migraine Awareness Month and my friend Michael Fernandez (a migraine sufferer and patient advocate) migraine discussions.com, I have decided to share my migraine story.

My migraines began around age 17. I had many triggers back then, but the one I remember the best is pepperoni. If I ate it cooked (like on a pizza) I would get a terrible migraine, but if I ate it raw (like they sell it in packs at the store) I wouldn’t. I never could figure out how that worked. Anyway, I tried many medications, but the one that helped the most back then was the sumatriptan injections. Back then the medicine was new and cost me a hundred dollars for two injections. Luckily I worked at the time and could afford them. At one point, though, I was having up to three migraines a week. I even went to the ER because of them on a couple of occasions. Literally anything would set them off.

At age 19, I had gastric bypass surgery and the migraines mysteriously stopped. I might have one once a year or once every two years, but nothing compared to before the surgery. Since the timing was right, I thanked the surgery for curing me, but later found out that it was just good timing.

In 2011 my migraines returned with a vengeance. I went to see a neurologist and I was told that sometimes migraines will go into remission for a while, but they usually end up showing back up sooner or later. This time, though, I seemed to have only one trigger…the sun. Anytime I went outside that summer I would get a migraine. I tried sunglasses, but just couldn’t find ones dark enough to shield me from the UV. Luckily after that summer the migraines eased up a bit, and I could go out in the sun, but if I stayed out for a good length of time the migraine would set in. My new neurologist started me on preventative medications that first summer that really seemed to help by the time the second summer rolled around. I also began using a medicine called Maxalt for when I would get a migraine. I still use it to this day if I think a migraine might be coming on. As soon as the headache starts I can take the Maxalt and it keeps the migraine from getting too bad.

I still get migraines now, but they are much weaker than before. Sound and light still bother me, but it is out of the ordinary these days for it to get bad enough to cause the nausea and vomiting that it used to. I would still love to find a good pair of sunglasses to help me with my sensitivity to light. I wear prescription eyeglasses, but after asking around found out that when the optometrist puts the UV shield coloring on, it really doesn’t get that dark. If I could find a pair of glasses that truly helped, I might look into wearing contacts again. I had to stop at one point because I take so many medications that my eyes stayed too dry to allow me to wear them. I would love to find some glasses that could be made according to my prescription strength, but I’m afraid to think of how much they might cost. Another problem I’ve run into is finding frames that cover enough of my area of vision. Usually the sun still seeps around the edges of the frames.

Even though my migraines have gotten better thanks to the preventative medications, I’m always scared of the day when they might return again with the same intensity as before. Here’s to hoping that the meds keep them at bay.

Bye Happy Joy

So, happy Joy didn’t last very long…as usual. I’m so frustrated. So tired of having no support system. Tired of being made to feel like I’m worthless and some kind of druggie because I am sick and have to take medication. I woke up this morning to a barrage of insults about how nothing is ever done around the house…about how I just stay in my room (hell yeah! It’s the only room with AC) and take medications and smoke cigarettes. How can he say anything when he smokes and takes medications? How is it possible that he doesn’t understand that I didn’t choose to be sick? I didn’t choose to have to take medications, and I didn’t choose this life. All of this was chosen for me by a higher power.

So, as of now I have adhesions, fibromyalgia, prediabetes, hypoparathyroidism, and now hypothyroidism. It seems my body is attacking itself. The first to go was my thyroid. What will be next? Hopefully the rheumatologist will be able to figure out what kind of autoimmune thing is going on when I see him next week. But all in all it really doesn’t matter. I will still be seen as a lazy, good for nothing druggie. Sometimes I wonder how different my life and illness would be if I had a support system and less drama. I think it’s time for another trip to my sister’s. I really don’t want to be around any of this right now. I shouldn’t have to put up with someone trying to judge me and insulting me.

The Cherry on Top

I had an appointment with my endocrinologist the other day. I see him for prediabetes and hypoparathyroidism (extremely low Vitamin D deficiency). We make time for each other every 6 months where he checks my bloodwork (that I get done 1 week before my appointment), tells me everything’s looking good, and then I go home. Well, that’s the way it has been the past year…

Monday, however, was unfortunately not my usual easy appointment. He takes a look at the test results, and circles something before continuing down the list. At that point I was thinking to myself that maybe my Vitamin D levels were off again or maybe it was my A1C and I should be checking my blood sugar more often.

Well, imagine my surprise when he asks me if I’ve been taking my thyroid medicine! I was like, WAIT…you never prescribed me any thyroid medicine because you said that my thyroid has always checked out. Turns out that what he had circled was the results of the thyroid test. He checked back at the past labs before saying, “yes- you’re right. Before the levels were always normal. Today, however, it seems that your thyroid is not functioning anymore.”

WHAT? That was the last thing I expected to hear. So he checked my neck (where the thyroid glands are) and said that they were swollen. I had actually noticed that the area had been sore for a while, but I assumed it was because I smoke, or maybe because I was getting sick…not realizing that I never came down with anything.

The thyroid gland controls the way your body uses energy, like your metabolism. The symptoms of hypothyroidism (not producing enough thyroid hormones) are a lot like those for fibromyalgia. Low energy levels, tiredness, weakness, trouble dealing with cold temperatures, and memory problems (or trouble thinking clearly). So I assumed those were all because of the Fibro. Also, it can cause dry hair, dry skin, constipation, and hair loss. I assumed the dry hair and skin was just a byproduct of the extreme colds this winter and I deal with constipation because of the adhesions and pain medications. The hair loss I didn’t really think much about because I have really thick hair and always shed. So see, there was no symptom that was really out of the ordinary for me. Add to all this the fact that when something is wrong I can usually tell, but then it is a matter of getting a doctor to agree with me. It’s sad that things are that way, but it’s true. I forget sometimes that I have composed a great team of doctors (the jury is still out on my GP, though lol) and don’t really have to worry about that anymore.

Suffice it to say that I was STUNNED that something is wrong with me and I didn’t realize it. It also bothers me that the inflammation has caused permanent damage to my thyroid and I will now have to take thyroid replacement medication for the rest of my life. I mean, it’s not like I didn’t already have a laundry list full of different diagnosis…now I have one more that will follow me around. One more invisible illness to have to manage.

So yeah, when the doctor told me all of this, I said “well isn’t that just the cherry on top?” One more thing to have to deal with. I am, however, looking forward to the fact that once the thyroid levels are regulated I may get a little bit of energy back. I really miss having energy! What I am not looking forward to are the doctors appointments every two months until we find the right dose of medication or the new pill I will have to take every day. At this point, all I can do is look forward to the sweetness of that cherry instead of the hard pit in the middle.

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!

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.  Lastly, 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!