Why I need help:
Here I will tell you about what I want, why I need it & what help has been given to me & the help I have sought
The NHS doctors have either done all they can, or admit they don't know what's causing my symptom, so they can't help me. Therefore I need money for private treatment, to get some thing's I know would help but the NHS's budget can't afford. This includes items such as custom made splints and a wheelchair that fits my long slim body. I also need private consultations with specialists that know about more rare conditions such as Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome, and can suggest treatment so help lessen my symptoms and suffering.
To achieve this I need your help.
I am being realistic and not expecting that I will be able to afford everything on my lists, nor that one consultation with each professional is going to be enough.
Just raising a few hundred for one consultation with a urologist will not mean they diagnose me right then and there; usually the first consultation is mostly discussion about my symptoms, how long I have had the problems, other health condition, what (many) doctors I have previously seen and what investigations they have done. But I know there has to be somebody who can help eradicate my kidney infection.
And with physiotherapy and hydrotherapy after a full assessment they will be able to give me suitable exercises to go away and do, then I will have to come back and get some tweaked, then go away and carry them out, but come back to touch base to see if they are still appropriate as I gain strength.
Private appointments are very expensive
To give you an idea I have just received a quote from a Professor in Autonomic and Neurovascular Medicine who was recommended to me, by Rodney Greham (a renowned EDS specialist in London), to create a treatment plan for my Ehlers Danlos and the first appointment is £345, while follow appointment's will be £265.
I also have to pay for an ambulance to take me all the way from my home in The Boarders to London hospitals & back again (the only way I can travel is my stretcher)
A hotel to stay at for at least 2 nights (as I am too ill and do not have enough energy to travel and have a hospital visit all in on day.)
Then a taxi to and from the station, hotel and the hospital.
Even if it is possible to get medical appointment sin the same week,and stay at the cheapest hotel I can find (which lets face it is very hard in London!) and my mum & I eat the cheapest food & drink possible, it is still a very expensive trip.
I am aware there is no quick fix, but a step in the right direction would be better than no steps at all.
A list of private medical treatment I need to enable me to get better:
- Follow up POTS Consultant in London who needs to preform tests so he can suggest the most appropriate medication to alleviate my symptoms (that will cost at least £2000!)
- Specialist Ehlers Danlos physiotherapy
- Urologist to identify and treat Kidney Infection/Kidney Stones
- Prof Azize for tummy related Ehlers Danlos problems
- A crown for a shell-of-a-tooth
- Advice/fitting/purchasing custom splints/supports that would help me
- Fillings/ braces
- Somebody to be able to help keep my jaw in place- maxofacial doc?
EDS Pain management specialist
- An immunologist (who will actually agree to see me unlike the NHS!) to explore my Mast Cell problems & put me on tablets that keep my symptoms under control better
- A back brace to enable me to sit upright & prevent my spine from getting more curved.
Also if you have any ideas of specialists that I might find useful, please suggest them to me :)
A list of items I need to reduce pain & fatigue:
- A suitable electric wheelchair that is for tall people
- A back brace to enable me to sit upright & prevent my spine from getting more curved, lessen pain, improve breathing etc.
- Electric adjustable 3/4 bed
- Tall/deep soft comfy armchair with leg raiser
Back-lit bathroom mirror (I cant lean over the sink or my ribs pop out)
- Custom made splints (for my wrists)
- Custom made brace for my left shoulders (to prevent it dislocating)
- Custon back brace (to prevent my kyphosis getting worse)
- Custom made gloves (arthritis kind)
- Wheelchair accessible Car (more of a wish item, but may as well put it on!)
As if the list of things I want wasn't extensive enough, I also need a wheelchair friendly room, with on suit washroom, renovated before I can move into it:
These items aren't directly related to my ilness/dsiability, but I would not need them if I was not ill &
disabled. I shall explain:
My lovely grandma passed away in october 2013, and she lived with us (all my life) so now her bedroom and on-suite bathroom is not being used.
I have now got to the stage where using the family bathroom is impossible, I have been wheeling back & forth to use the wetroom but due to my worsening symptoms it makes sense that I move into my grandmas old room so I can have a disabled acsess en-suite shower room.
Unfortunately my gran used to smoke (she managed to give up in her 80's!) so her room is covered in nicotine, and the carpet is over 20 years old, so it's past its best to say the least! So I would need the bedroom re decorated; plus I spend a lot of time ill in bed, so would like to have pretty surroundings:)
The bedroom is very cold, as I have POTS I find it extremely difficult to control my temperature and not helped by my poor mobility I am often cold (or too hot, my body doesn't like a happy medium!). My step dad explained that the pipes that go from the sitting room to the bedrooom are narrower than the rest of the house, so that is why the room is so cold. I really need these pipes replacing with wider ones, before I could move bedrooms.
All of these things would be expensive, carpet alone would be at least a month of my entire income!
So I would appreciate any money or any decorating buisnesses who could offer something to go towards the cost of doing up my grans old bedroom, so I can have a bit of an easier time.
P.S. Also as an avid ebay user, I can find bargain furniture, it is the carpet, paint and piping that costs the most.
A Lot of things are suggested by physios and doctors, but I have to use my own money to buy them; before I was disabled I assumed that the NHS pays for physio tools etc but they do not.
Disappointingly sometimes the suggested items aren't helpful, or make me worse, so I have to either re-sell them on eBay for a fraction of what they cost me, or I donate them to charity.
An example of things I am trying to save up for is an over-bed table which I can move on my own & doesn't have lumps around the edge which makes lifting things over very difficult or impossible so I have to reply on someone else to carry out a yet another task for me. A suitable over-bed table costs about £400!
An extra long, electric adjustable bed would cost upwards of £1000 & a made to measure reclining armchair with riser & leg elevation function about £1500. Plus other aids/furniture that I can not justify spending that much money on... or realistically afford, like my dream £30,000 wheelchair.
If you have made it this far down & actually read everything, thank you & well done, here is a reward cookie :)