Day in the life of me
15 February 2021
Losing my mobility and Independence because of Ehlers-Danlos 🦓
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A day in my life
15 February 2021 -
Bronchoscopy and lung wash day
15 February 2021In through the nose and right throughout the lungs
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Pumped full of protein and fluids
15 February 2021 -
Mitral valve prolapse and pneumonia
15 February 2021 -
Mitral valve prolapse
15 February 2021 -
Mitral valve prolapse and pneumonia
15 February 2021This has been a crazy month and this photo is just the tip of the iceberg. I'm now facing getting pneumonia on a regular basis as it's being caused by a mast cell activated allergic reaction 😓 they have found I have a Mitral Valve Prolapse which is a heart valve, I have so much going on with up coming tests e.g x-rays. Lung function test and not let ng had a Bronchoscopy and a lung wash. This is just the start of what's to come in the areas concerning my heart and lungs not to mention all I have going on before this.
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First Round Of Prolotherapy
6 March 2020I went to Whakatane hospital for Prolotherapy (ultrasound guided injections).
For now I only had to have one injection to ensure i wasn't allergic, in around 5-6 weeks I go back and have the full 6. This will continue for a very long time as its not a cure just a new treatment.
I have also got a sigmoidoscopy (a camera into the bowels and intestines to create a surgery plan.
Thanks you all for your love and Continued support it's very heart warming to know that there are others who care in this world.
Warm regards until next time
Miss xx
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Daily Medication Bag (former first aid kit)
5 February 2020This is the medication i take daily. I have the rest in a large bag put away safe, There is no way I could carry it all on my persons. This is a glimpse into to my daily life. Ill be updating you more often so you can follow my journey of living with EDS
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Hyperglycemia to add to my ever growing list!
5 February 2020I now have been found to have low blood sugar levels.
I need to keep an eye on them to ensure they don't go so low that I get the horrible symptoms. I must check when I wake, before and after each meal. (6 small meals per day now) and before bed.
So many things I had to remember now I add this and it's a pretty busy day maintaining and staying ahead of symptoms.
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Travel to Whakatane for Ultrasound Guided Injections.
4 February 2020I'm having to travel to Whakatane Hospital for what is called Prolotherapy Treatment.
This is Cortisone Injections into my upper extremities to releive pain. Now this will hurt while it being done, for the rest of the day and 2-4 weeks following the treatment.
I will be in a lot of pain. During this time I will have to be on bed rest and higher pain releif which we have chosen to be Morphine (the specialist, my doctor and myself).
I'm having this procedure on the 28th of this month. We are on a very tight budget and also having to move. (landlords elderly mother is taking over our house). We may be living in a big house bus so I'm needing to ensure i have all I need to be comfortable while I'm resting.
After this in April is my next procedure. The bowel reconstruction and prolapse repair. And also could be a hysterectomy at the same time to rid me of my Adenoymyosis and Endometriosis. Consultation with the surgeon is on the 1st of April.
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Prolasped bowel repair/ bowel reconstruction surgery
6 January 2020I was once again this week admitted to tauranga hospital. I need to have a rectal prolapse repair/ bowel reconstruction surgery.
This is going to be very testing on us as a family and finances for all these trips to hospital and medicine cost until I get my subsidy card around April/may.
Tough times ahead with recovery after the 6+ hour surgery. Luke will be at his engineering course and kyah at school. I may need at home assistance and will be bed bound for a few months.
I'll update as soon as I have the surgery date and keep you posted through out my hospital stay, surgery outcomes and the recovery process, God bless you all for caring and showing our little family that there's good in this world 🤗 (picture of me with nerve and tmj pain causing migraines and eye black outs and spots. )
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Body is turning on itself!
27 December 2019Surgery will be coming up in the new year,
Something I'm really not looking forward to. My bowels are starting to not work well at all and it's starting to go through my body up to my stomach. ( I'm scared of surgery because of catheters and being bed bound until healed enough to use my bowel and bladder on my own again)
I'm having all sorts of pain and symptoms. And am stuck at home alot over the past few months.
I will update when I have a date, I have the acceptance letter from general surgery and am on the short wait list.
Thank you to all who are supporting me through this ride I'll be on for the rest of my life, just different organs and problems.
Warm regards,
Mish xo
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Prolasped bowel and internal virus
1 December 2019Hey everyone who is following my journey,
I have just spent 3 and a half days in hospital, I went in for my prolasped bowel getting really bad and causing extereme pain, high temperature and very high heart rate.
I got admitted to the general surgery ward, not because of my of my bowel alone but because they found my crp (c reactive protein) and white blood cell count were extremely high which indicated some kind of virus.
I was administered I.V antibiotics and alot of pain medication over the couple of days I was there and my levels came down a little but still remains high. I'm on a 14 day at home antibiotics treatment plan while I await my colonoscopy.
My mobility has taken a hit because the virus is quite powerful (the pain,temps and dizzyness is what sent me to hospital on the recommendation of my GP). I'm unable to walk far before my body wants to give out and I feel as though I'm going to pass out. My EDS is taking a huge hit, all symptoms are intensified and prolasped bowel is unfortunately another co-morbidity of Ehlers-danlos.
I'm contemplating getting a wheelchair on hire until I can afford the 400+ to purchase one. (I'll be what's called an ambulance wheelchair user-only when needed on bad days).
I'm hoping this antibiotic treatment works as I'll be back in on the I.V souloution. But for now I wait for corelectal team to be in touch about surgery. And what plan we have going forward. (They are still finding the cause for virus as all swabs and tests were clear for infections).
Thanks all for being here with me
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