Yesterday I visited my GP Dr Khan as my new Endocrinologist has changed the dose of my Hydrocortisone (steroid medication) and I needed the GP to update the pharmacy of the change. I have finally found a great doctor who listens, makes great referrals and is trying to help get my illness stabilised and managed.
I’m feeling rather annoyed with my past GP in Pontefract who never listened, ignored my concerns and quite frankly was rubbish. I’m also annoyed at the Endocrine Nurse in Yorkshire who caused me to be a “medical guinea pig” for over a year, changing my medication around constantly, failing to consider that I needed a higher dose of medication at night, telling me not to double dose (when my new specialist says I should) and never giving me an emergency injection to carry around in the event of an adrenal crisis.
Now I’ve vented and acknowledged that the NHS in Yorkshire failed me, I can move on knowing that my illness will be better managed with a more experienced Endocrinologist, the correct medication dose and new stress dose rules.
From now on if I feel unwell, have weak, aching muscles, get dizzy, nausea or stabbing pains, I need to double my medication for three days or longer. I need to double dose for any virus, infection or fever as well as for menstrual periods.
I can then drop down to the everyday single dose when I’m not having the above symptoms. By following my new medication rules, I should “theoretically” only have to go to the hospital if I’m involved in an accident, when my blood pressure drops or if I vomit or have the runs, (ha ha lol).
I’m pleased the constant low blood pressure, dizzy feelings and nausea has stopped.
I’m grateful I can now stand up and do things for a few minutes at a time before needing a break. However my symptoms will always come back 2-3 times a day, whenever my next dose of cortisol is due. (Until the day when I get a Hydrocortisone Infusion pump- hopefully within the next five years)… when the research is completed.
I will always suffer from chronic fatigue (I always have done) and have chronic headaches three times a day as the (lifesaving steroids I have to take to stay alive) give me headaches whenever I take them but at least I will be able to function better.
Today, I purchased a new but very important medical item, the OMRON M6. which is a blood pressure machine i’ve named Berty. This will help me to know when my blood pressure is dropping and will potentially get me to A and E for intravenous hydrocortisone and saline etc quicker, meaning I will get better quicker and be out of hospital faster.
My next appointment at Preston Royal and then I’m seeing a specialist at Salford Royal Hospital, (Manchester).I just have to find a babysitter to watch Sylvia after school as we wont be back in time to pick her up.
All in all, i’m feeling a lot happier because my blood pressure is in range and I don’t feel dizzy and nauseous. It is my hope that I will have my life semi-normal by the end of the year and that we can move on from this bump in the road which has plagued all but one week of our marriage so far.