Expectations and a reality check

I am home again and happy to be here!

This week has been massively full of appointments, and meetings and honestly, not much else.
I've never had 3 specialist appointments more different within one week and it has got me thinking about why?
Did I have too greater expectations? Too little expectations?  Was I more interested or involved in one appointment over another? Why, why, why!???!

All the doctors appointments were made to be with professionals each at the same technical level as another within their specialities, yet why are the experiences for me so different.
What do you guys think??

Tuesday was a massive day!
It involved a trip to my autonomic neurologist who is located 2.5hrs away. The day started early with my carers arriving early to get me ready for the day. Thankfully I had 2 of the better ones on shift so things were actually done and I wasn't left hanging like so many other days. Once I was ready I began the torturous wait for the paramedics to arrive within time. I was pretty nervous about it all because last trip they arrived really late, with exactly 90minutes to make the 2.5hr journey. I was very stressed about it but luckily on that day I got 2 great paramedics who were both flexible and did me the illegal favour of driving a large portion of the journey with lights and sirens & a quick dip over the median strip onto oncoming traffic in the dense part of the city. Thankfully the crew on Tuesday arrived with slightly more time to get there than the prior trip but still had to drive at 140km/hr all the way, so it was a partial lights on trip.
Side note: As a once a proud owner of the cutest little black Echo, "Ecka's Echo" to be it's exact name, I get a tad jealous everytime I see the paramedics using the lights. By no means did or do I want to be in an ambulance under any circumstances but having the option to part the seas of traffic if I had made a wrong turn or running late would've been quite handy. For now though, I'm a full-time passenger in my big blue car which has been modified for transporting me whilst I remain sitting in my wheelchair. I'd love to sit in the car seats in the future but for now I don't have enough core strength & stability to do so, not to mention the fact I still cannot sit up outside of my supportive chair. No lights for my big blue car, what a bummer!

ANYWAY back on track....
This appointment usually happens every 3 months face to face and during the inbetween times my Drs communicate via emails & phone. I'm always hopeful going to these appointments. Mostly there is nothing outstandingly exciting like a drug to cure me (I wish!) but my Dr always seems to have a new viewpoint on something, whether it be; making medication adjustments, discussing exercise regimes, how I'm progressing, or adding other ideas for managing all of the different organ systems that have been affected by the autonomic failure. I always leave knowing just that little bit more about how to manage an element of my condition, so I look forward to what is on offer.
My doctor is a 'no shit' type of person and I love it. She calls everything as it is and is as blunt as a butter knife. I was first introduced to her mannerism when she started me on steroid medication upon my first visit and in response to me asking if I'd expect any changes on it she said "you're going to get fat, deal with it." Slightly shocked at the time but happy, as for me, that directness is fine and I like that she can sometimes see the situation black and white, raw and honest. The appointment this week was no exception. I always go into the appointment with my parents and 'Gretel' as support and mostly, whilst I have been in hospital, the nurse that has accompanied me on the trip has come in aswell. I love that in the appointment my doctor talks to Me. She looks at me, asks questions to me and is really only interested in what I speak about, as if no one else is in the room. I appreciate that she is very patient-centred and does not feel she needs to talk to anyone but me.

This appointment was a success. We discussed a number of things that have been happening and she commented that I looked much better than when I saw her last (3 days prior to my 2nd bout of sepsis in 4 weeks). There were plans put in place for medical tests to be run, a port to be placed (as I literally have no viable veins to cannulate and need to have an IV line at least 4 days every month), discussion over her opinion to increase a drug and a few other things. She had all the time to talk and I was able to ask any questions & so was my family. My sister, being a medical student aswell, always has a good chat about anything she's thought of which is great. At the end of the appointment plans were made for her to get in contact with my GI specialist, urologist, rehabilitation consultant and local neurologist. Then we made our trip home trip home which was another fast run which was wonderful considering how unwell I was and the thrilling conversation with the old paramedic guy who just wanted to tell me about his and his wife's tattoos the Whole time! Ahhh!!!!
Exhausted is an understatement of how I felt after the trip, but as I reflect on the outcome of the day, I am content. I feel my questions had been answered, I was respected and listened to, progress was happening, a plan was  introduced and medication options were open for exploration. I am at ease once again and ready to continue on my path of optimism. The best line my doctor says at almost every appointment is that she continues to remain "cautiously optimistic" at this stage, and that is fine by me!

 I hate mornings and I have NEVER been a morning girl. I feel violated by my alarm clock if it rings earlier than usual and on Wednesday it rang it's heart out. Still tired and recovering from the big trip and subsequent autonomic flare of symptoms I had to be at another specialist this morning. This time it was a dermatologist appointment at my major local hospital. I arrived just in time for the scheduled appointment accompanied by my nurse. I was looking forward to this appointment to find out what
this new and strange rash was and also have a check over of my current medications for my severe
 psoriasis, which joined the party when my illness presented itself. Once being seen by the admin staff we began our wait. We waited, and waited and waited... After falling asleep in my wheelchair I woke up after 1hr and 20minutes with my nurse still waiting. I had still not been called in for my appointment at this stage. Finally after another 15minutes a group of 3 third year medical students called me in. They then spoke with me very vaguely about why I was there. They didn't even ask about my medical history despite me sitting in front of them in a big electric wheelchair which I found odd. Enter Dermatologist Dr. He is clearly busy and rushing and I give him the reasons I am there. He tells me I most likely have an allergy to penicillin antibiotics and need to see an immunologist for further allergy testing just to be sure, he tells me I have an infection inside my nose, and finally he rambles out a complicated medication name I have not heard of and verbally spews a new medication regime at me in under 2mins. He and the unhelpful students leave in under 10minutes with a promise to return. My nurse 'R' and I sit in the consult waiting as I get more uncomfortable and dizzy from being up so early and after 45minutes the Dr walks past and says "Oh, I forgot you were there, sorry. You can leave." I reminded him he was going to prescribe an antibiotic for me so he does that and sends it in with a nurse and then we leave. It was an appointment that I felt furious, frustrated and excessively time consuming all for nothing. The whole event felt like it was an effort for this specialist to do his most basic job of consulting a patient. He was clearly a very educated and intelligent Dr but he was run off his feet and I was just another number in his waiting room. This appointment left me thinking about how is it that within 48 hours I have seen 2 consultant specialists in their fields & my patient experiences couldn't be further from each other. I started to wonder a variety of things

Was it because I was less important?
Was it because he didn't care?
Was it because he was too busy?
Was it because we didn't have a history?
Was it because I wasn't as interesting?
Is this the typical way this department is run?
Why?

I woke up the next morning and was mad. So mad that I got some guts and called the
dermatology department and spoke with the supervisor in charge. I expressed my frustrations and so she then followed up on my story and returned my call with a sincere apology about the poor management of consultation and re-scheduled me in for next Monday the 8th. Second times a charm right???  I hung up the phone and wondered if this next appointment would be worthwhile or different. I am still wondering this right now to be honest, but I will attend in hope of some transformation from sub-standard to acceptable practise.

My third specialist appointment was with my GP. My GP is lovely and kind but as far as knowledge of my conditions, she is clueless. Before getting sick I was living away from home and didn't really have a steady GP. I was relatively healthy and didn't need to have a regular person, so when I became unwell and was close to being discharged, my mum found a nice GP who was willing to be part of my team. Not only was he interested, intelligent and very good looking, I felt like he cared.
Unfortunately for me he had to move away and so I had to start over with another Dr, this time a lady whom I will call 'Dr B'. At first she did not want to be involved in my case and encouraged me to see another doctor within the practise, but I had done my homework and none of the others were suitable so I stuck it out with her. At my second appointment I asked if she would be happy to continue seeing me and she was much more at ease. As I've barely been home enough to form a proper relationship with her we are still working on it. The thing that's most surprising to me, is that every time I come in for an appointment, I run the entire thing. I come in with my list of medications and dosages I need scripts for. She writes them. I request blood tests that I know I need, the papers are handed to me. I explain to her I need a new referral update, it's done. Basically in any instance, I discuss an issue I'm having and then request and receive the necessary. It often feels like an interview or administration activity. I write a referral I need worded correctly and Dr B types it up on official paper and signs it. At every appointment I update her on the specialists I have seen recently and she comments on how she thinks I look great and then I leave. If I leave and then forget something I had needed it's totally my fault as I know I only get what I request. Sometimes I get very frustrated as I honestly think I could do all of this myself. I want to share this job of GP and not be entirely reliant upon myself to think for her. I do have a better understanding of my condition and my requirements surrounding that but I am not a trained professional. I do not know about everyday bugs and sickness that every human encounters and I am not equipped or educated in this. I am grateful that she respects that I am educated about my conditions but occasionally I would just like to pass-the-buck on the rest of the GP stuff and let her step up and take the reins.
Again I left this appointment thinking about how different these 3 appointments were and was I being unrealistic to expect similar standards of each professional or should I be adjusting to their ways?
I ask myself:
Is this is what a typical GP relationship is like?
Is this how 'it works' when you have a chronic illness??
Why do I have to be the doctor and the patient?

As this week has come to an end I look in my calendar to see that next week I have yet another 3 specialist appointments, this time with my GI specialist, gynaecologist and radiologist. I wonder how different these appointments will turn out to be considering I know one specialist exceptionally well, another this appointment will be the second meeting and the latter one I have never met before.
Should I expect a similar level of treatment and care?
Right now I'm not going to think much about it, instead I choose the option to remain cautiously optimistic and see what the week brings...

Do you expect the same standard of treatment from professionals at the same level in their career?