Monday, 18 November 2013

A lack of understanding

So hi there!

So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.

I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.

I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?

My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.

In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.

It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.

Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.

So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)

Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.

In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.

The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.

So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.

So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)

By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.

So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.

When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.

In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.

They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.

So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.

However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.

So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.

The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.

So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.

So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’

I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.

The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.

However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.

I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.

If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.

Anyway I hope that I can get back to normal posting :)

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