Inconvenient Annoyances

Medical update.

Finally had my specialist appointment today. What a different experience from my GP!

She has reordered all my labs, which I had taken today, and I should have my iron infusion appointment by the beginning of next week plus for good measure, I'll be having an upper gastrointestinal endoscopy and a colonoscopy. 

So relieved to finally be in the specialist system!

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Thank goodness! I just found out they made a pain management referral for me so hopefully in August I'll get somewhere.

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I'll be having an upper gastrointestinal endoscopy and a colonoscopy.

What a pain in the butt. 

Apparently today is medical day on UKY.

My doctor said I've got an abscess in my upper ear from my infected ear piercing, so I'm on antibiotics for the next five days.

It'll be fun planning the meds - I need to take four capsules a day (one at a time) on an empty stomach at least two hours after eating and one hour before eating.

At least I work from home so I can be a bit flexible with my meals and take it easy if I get side effects.

What a pain in the butt. 

Apparently today is medical day on UKY.

My doctor said I've got an abscess in my upper ear from my infected ear piercing, so I'm on antibiotics for the next five days.

It'll be fun planning the meds - I need to take four capsules a day (one at a time) on an empty stomach at least two hours after eating and one hour before eating.

At least I work from home so I can be a bit flexible with my meals and take it easy if I get side effects.

I'm always eating... I'd be screwed.

This anaemia even has me waking up in the middle of the night to eat. 

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What a pain in the butt. 

Apparently today is medical day on UKY.

My doctor said I've got an abscess in my upper ear from my infected ear piercing, so I'm on antibiotics for the next five days.

It'll be fun planning the meds - I need to take four capsules a day (one at a time) on an empty stomach at least two hours after eating and one hour before eating.

At least I work from home so I can be a bit flexible with my meals and take it easy if I get side effects.

You might need to make a spreadsheet to figure it out!   

So pleased about the referrals ladies.

My top tip - do NOT let me discharge you.  Tell them you are happy to just call when you need another appointment but don't have them discharge you back to the GRP - EVER!   

So pleased about the referrals ladies.

My top tip - do NOT let me discharge you.  Tell them you are happy to just call when you need another appointment but don't have them discharge you back to the GRP - EVER!   

Yep, already knew that one from the EDS groups I'm in! I'm relieved that seeing the GP I was assigned to went much better.

I'm always eating... I'd be screwed.

I work from home and do a lot of snacking, odd meal times and... erm.... more snacking. This will be a tough five days, but maybe it'll help me get into a better routine, or at least make me see how much I snack.

You might need to make a spreadsheet to figure it out!   

I've written out a rough schedule for tablet taking and meal eating for the next five days and I have my timer going for the two hour and one hour windows. Fortunately, I like that kind of planning and tracking, but it's easier to do the planning than it is to actually stick to it.

Medical update.

Finally had my specialist appointment today. What a different experience from my GP!

She has reordered all my labs, which I had taken today, and I should have my iron infusion appointment by the beginning of next week plus for good measure, I'll be having an upper gastrointestinal endoscopy and a colonoscopy. 

So relieved to finally be in the specialist system!

Meanwhile, I've still not heard anything about my cardiology referral.  It's been six weeks since I went back to the GP practice to ask again (after waiting over a year thinking it was just a long slow process)... I'm considering another GP, or going private to get started.  I didn't necessarily expect to be IN by now, but I would've thought to have heard from them to reassure me they were doing something this time.

Meanwhile, I've still not heard anything about my cardiology referral.  It's been six weeks since I went back to the GP practice to ask again (after waiting over a year thinking it was just a long slow process)... I'm considering another GP, or going private to get started.  I didn't necessarily expect to be IN by now, but I would've thought to have heard from them to reassure me they were doing something this time.

There is a number you can call to chase it up yourself.  Let me see if I still have it.

01324566249

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Meanwhile, I've still not heard anything about my cardiology referral.  It's been six weeks since I went back to the GP practice to ask again (after waiting over a year thinking it was just a long slow process)... I'm considering another GP, or going private to get started.  I didn't necessarily expect to be IN by now, but I would've thought to have heard from them to reassure me they were doing something this time.

Eek. Yeah, chase it up! I get a text message and email as soon as an appointment is scheduled. You have to be careful about private because they can't always transfer you back to their NHS practice, so if you go that route make sure to ask ahead of time!

I'll have private coverage 3 months after starting my new job and i am so thankful for that! Hoping it isn't BUPA but I don't know yet. Getting onto the NHS has been such a drawn out process some of my things will no longer be "pre existing" in their eyes at least because it'll be a year since I had care for them.

Meanwhile, I've still not heard anything about my cardiology referral.  It's been six weeks since I went back to the GP practice to ask again (after waiting over a year thinking it was just a long slow process)... I'm considering another GP, or going private to get started.  I didn't necessarily expect to be IN by now, but I would've thought to have heard from them to reassure me they were doing something this time.

I would have expected for you to receive a copy of the referral letter that was sent...   

I would have expected for you to receive a copy of the referral letter that was sent...   

I didn't get one either. It took 3 months to get my referral appointment invitation and a total of 4 months until my appointment yesterday.

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I won't lie... I am starting to think that maybe this area is not going to be a good place for me, medical-wise.  I don't make a lot of demands on NHS (in 5-1/2 years, I've seen a GP 3 times, had one "asthma clinic", and got a flu jab), but when I ask for something I'm used to getting it.  I'm usually taken very seriously.  I know I've neglected myself for the last few years, but I would've thought that once I identified myself to them, they would be all, "whoa whoa whoa... get in here!  We need to check this out carefully!"

I won't lie... I am starting to think that maybe this area is not going to be a good place for me, medical-wise.  I don't make a lot of demands on NHS (in 5-1/2 years, I've seen a GP 3 times, had one "asthma clinic", and got a flu jab), but when I ask for something I'm used to getting it.  I'm usually taken very seriously.  I know I've neglected myself for the last few years, but I would've thought that once I identified myself to them, they would be all, "whoa whoa whoa... get in here!  We need to check this out carefully!"

From the experiences of EDS folks I know in Wales, its not good the CCGs are very low on money and there's a lot of people with lifestyle illnesses.

From the experiences of EDS folks I know in Wales, its not good the CCGs are very low on money and there's a lot of people with lifestyle illnesses.

B@stards ruining it for the truly needy!  *shakes fist*  '

I'm mostly joking.  But, for reals... if exercise and eating right would fix my heart valve and give me bigger lungs, I'd do it.  My conditions aren't the result of lifestyle choices I've made, and regular monitoring could let us know well in advance when any intervention might need to happen (though I'm not entirely comfortable with the idea of having heart surgery on NHS...).