when the drs think they know best


When the Dr's think they know more than you.

I write that title with an element of sarcasm and am mildly amused with myself as I type it.

In fact my humour is the reason I have coped so well with my life and misfortunes. Some years have just been a series of unfortunate events which have made me want to jump in a big rabbit hole and never return.

But im not Alice and mollys chest couldnt cope with smoking caterpillas.

So ive stayed in the real world to face it full on.

I suppose people when they meet me sometimes think me a bit of a fool. I have to be because if I took everything as seriously as I should I would eventually crack up.

We also have to try and keep Molly happy and upbeat you see. Laughter is the best medicine. and so if we have to spin around on wheely chairs to make her laugh. Or are silly in general  whilst shes having hideous tests then so be it.

I just want to say to the drs. professionals, consultants, professors and all who follow you.

Please do not under estimate the intelligence of your patients. And in my case the parents of your patient.

Firstly we are parents, our best interest is keeping our child happy and well. Secondly is your opinion of us.

It is true as parents /  patients we hang on your every word. We are only in your office because we have no choice. You are sometimes our only hope in the world. We see you as  part of our family if you have been around for a long time. We all have the wellbeing of our child at the front of our thoughts right?

Appointments are always looked forward to with much apprehension. And may be the slight chance that you may have a magic answer we haven't heard before. One which will Make her better once and for all. To be honest your job only exists​ because of people like us.

Everything you say has great effect on our lives.   Our expectations. 

 Recovery, management of our illness and positivity for the future.

Many of us do not have degrees we have not been to medical school but what we do have is experience of your patient. The subject sat before you.
I have come across good drs bad drs and drs who I'm sure are not humans... I have the greatest respect for all of them. But do they have respect for me ? Sometimes not.
For 18 years at the end of this month I have cared for my daughter. As a parent yes this is expected. But the level of care I have given has been to the expectations above and beyond normal parenting skills.

I wont bore you with 18 filled years but in summary

I have spent weeks on end all through the night giving percussion physiotherapy. Nebulisers, antibiotics asthma treatment. Autogenic drainage. Just so my child could breathe! I  can truly say  I know my child inside out I know what she needs and when she needs it.

I know how far I can go to make her well before she needs to be in a hospital.

        For 14 of those years Molly was undiagnosed with a life threatening condition. I do believe my actions and intuition have saved Molly's life on numerous occasions.  Molly has adrenal insufficiency , thyroid problems and growth hormone deficiency .

The medical term is hypopituritsm her pituitary gland does not function as it should.

So for the first 14 years of her life,. Molly had no natural mechanisms to fight off or make herself better following a virus. 

Molly would catch a simple cold which would progressively just get worse and worse.

The level of care involved in this process every few weeks was / is immense.

Luckily for me Mollys gp's trust my judgment and were always in agreement when i could do no more and she needed to be hospitalised. I have amazing relationships with them.

  She goes down quickly was put on her notes.  Because she did. One minute she would be playing and coughing. The next her temperature would be 40 * and she would literally fall in to a deep sleep. This often meant my physio efforts had been exhausted and the infection had took hold of her lungs.

   After a few years of recurring chest infections / pneumonias moll grew a bit bigger. Although she was still getting poorly every few weeks. From the age of about 7 it was a little easier to manage her on my own at home for longer. With respiratory percussion nebulisers and antibiotics.  Her tubes and lungs were bigger it was a little easier to clear them. Sometimes we avoided hospital all together. but she still was a frequent visitor.

Her health never improved  looking back it wasn't going to because no one knew what was wrong with her. And no one knew that she needed hormone medication to help her live.

The first time i encountered a rude dr was when Molly was very young. I had been awake all night holding an oxygen mask to her face because she was frightened of it. I was shattered, worried, and just wanting help for her. This is not right my mind was shouting. No child should be ill constantly like this.
I'm not even sure why this woman was so rude to me. I  mearly asked what they thought could be causing molly to be so poorly all of the time.
She snapped at me like i was an inconvenience.  According to her they just needed to concentrate on getting her better. She implied she had no time for my nonsensical questions.

Excuse me oh powerful one ! Like I didn't want that too. It put me off asking questions very early on.

I was the one who had spent days and nights on end watching my child suffer.

She hadn't been there for that, she had never seen us before in her life. We just seemed like a couple of items on her conveyor belt she had to get through in the day.

Fast forward now to my encounter yesterday.

For the past  3 years I have done everything humanly possible to rebuild Molly following a hideous few years.

Finally at 14 She was diagnosed. This followed  being dangerously threatened with losing her life at any time in that 14 years. BECAUSE NO ONE referred her to the correct field of medicine for help.

She has ended up having to leave school due to illness.  Her weight has trebled she is pre diabetic and now has ME due to sheer exhaustion. My Little girl who once rode a unicycle (in-between being ill )  is now in a wheelchair. Despite my best efforts as a parent.
             I gave up trying to have a career.

Previously I worked as an artist from home, I had to be freelance due to the infrequency of being able to work.

For these 3 years on top of all of the extensive physiotherapy when she is poorly. Weeks in hospital and usual stuff i have explained I have gone above and beyond the realms of any effort anyone could make.

I pick moll up when she is down. We spend all of our time together. I care for her 24 hours a day, she has what ever she needs, I take her out in her chair we learn we do projects , create stuff. We do art Moll has more art products than hobby craft. We laugh we make a point of being positive. Sometimes she crys.  Sometimes she hates me because I'm the only one there to lash out at.

She has nothing else apart from me, her family and one close friend. Her days are mainly spent indoors. Its frustrating for a 17 year old. 
I spend 4  hours a week in a hyperbaric oxygen chamber with moll. I tracked the place down after reading a study on how it helps in the recovery of ME patients. Oxygen therapy instantly makes her feel better.

We drive through the countryside for hours every week getting to and from therapy's, oxygen and other appointments.

We have spent £3000  in the last three years on private consultants. Trips to London clinics, an air filtration system for the house to prevent molly catching viruses / having asthma flare ups.

We have a private physiotherapist out every Tuesday to help moll rehabilitate and build up so some strength.

We spend £200 a month on essential vitamins. On probiotics because molly's natural bacteria's have been destroyed by constant antibiotics. This doesn't even include a multitude of other things we are doing in the effort to get moll well.

I'm so glad to say though that it appears to be working!

The fact that  she is no longer in school means the frequency​ of virus's are less.

The air filtration system takes out viruses bacteria and allergens from the air. This means she catches less colds from her siblings, the Asthma is also remarkably improved.

We are no way near better as she should be. I still feel all of her symptoms are blamed on the CFS. I have little idea how her hormone levels or sugars are on a day to day basis. Nothing is really explained in much technical detail.

But from an immune system perspective we are making progress. last December molly was blue lighted to hospital because her health was so bad. Every cold was causing serious breathing problems.  one year later with the help of replacement hormones and keeping her relatively virus free  molly is suffering colds like a normal person. This has never happened before. even with the medication for 2 years previous to this. We are now building her recovery on solid ground. before she would get slightly better and then be put back by being poorly.

Taking all of this on board I get quite mad when our efforts seem not to be taken seriously. ' So ' I quote Molly seems better because you have bought n air purifier?' wtf? THINK GUYS BEFORE YOU SAY STUFF LIKE THIS ... its a bit like a kick in the teeth.

This after explaining how hard we are trying to make her well. I said I would like to get Molly back in to school when she is better not meaning next week, she cant even sustain 2 hours out.

besides I'm not a pushy parent.. I have one child doing a masters at uni another doing well in grammar school a genius 5 year old and I'm proud of that. But I have NEVER  pushed any of them in fact i don't believe in homework and will keep ALWAYS them off of school if they are unwell.   

I'm not bothered by grades I want moll back in school because of the social aspect. I want her to have friends and use that very clever brain of hers, she's never had a fair crack of the whip at school really.

So to think or imply  I'm going to put Moll in to school when she is not 100% healthy and better is insulting.

That is all. Just a snippet of one random appointment. Over the years odd comments and dr's looking down their clever noses at us simple parents has happened numerous times. Its upsetting.

Medicals!! We are all on the same page ! give us the respect we give you that's all we ask.