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My Life With Adrenal Insufficiency

My 2016 Health Goals And My Adrenal Pump Plan

Adrenal Pump

My 2016 Health Goals And My Adrenal Pump Plan

As many of my readers are aware, I am a Mother with serious Chronic Illness. I have been unwell for over seven years and was officially diagnosed with Secondary Adrenal Insufficiency in 2013 after I collapsed and was admitted to hospital. I was then diagnosed with Human Growth Hormone Deficiency in 2015 and started growth hormone injections in Dec 2015.

For the past few years, I’ve struggled to do the basic of things. I spend around five out of seven days in bed with the odd trip out of the home. I’ve been able to walk some days, other times I have been too unwell. I now have a wheelchair which I use for long distance. I simply am not well enough most of the time.

Since diagnosis my Adrenal Health never seems to be under control. I’ve had tests, day curves and more tests, however I still have serious adrenal symptoms. I get dizzy easily and nauseous. Sometimes my blood sugars drop, my BP can drop dangerously low and I may need treatment at the hospital.

In fact since diagnosis of AI I’ve had so many trips to hospital, I have honestly now lost track of how many. My steroid medication dosage has been changed more times than I can remember. I am currently on 20mg a day, however this drops in and out of my system causing fatigue and headaches when I’m low in cortisol. On tablets I’m always slightly under or over replaced and the best solution I can see would be to have ContinuousHydrocortisone replacement therapy also known as  The Adrenal Pump.

In 2015 there was an Adrenal Pump study conducted for Patients with Secondary Adrenal Insufficiency close to where I live. The Manchester medical paper explores the relative costs of treatment for steroid-dependent patients with a history of frequent hospital admissions. The paper concludes that for some patients, a cortisol pump may be cost-effective. All 3 of the cases reported in this paper had secondary adrenal insufficiency, like me.

Based on what I’ve read, heard and studied, I know the Adrenal Pump is the best option for me and I know it would make massive changes to my quality of life.

I’ve worked hard last year figuring out my options and searching for a way to get access to the Adrenal Pump. I am now one step closer and these are my next steps or goals for 2016.

Lose Weight – I plan to lose a lot of weight over the coming months. This will not only help me get a healthier BMI, prevent Diabetes and have more energy, losing my excess weight will allow me to reduce my daily Steroid replacement dose. I am dependent on steroids to live and without them I would die, however the smaller the dose the better as steroids can cause negative and unwanted side effects. This would also make having an Adrenal Pump much more affordable as my monthly medication would not cost as much money.

Find A New Endocrinologist– My GP has agreed to refer me to a new Endocrinologist. I have an appointment on the 7th January to discuss where and who I would like to be referred to. My current Endo team is in a small hospital and does not have any experience  with the Adrenal Pump. I now know which Endo I want to be referred to and I know that this Endocrinologist has worked with the Adrenal Pump and patients with Secondary Adrenal Insufficiency. This will give me a chance to discuss what I would like with someone who understands. A referral may take 2-4 months so I hope to see him by April fingers crossed.

Save up for the Adrenal Pump– I plan to save and raise the £9000 I will need for an Adrenal Pump, consumables and medication for the first 12-18 months. I’ll do this in 2016. I can do it if I work on my fundraising campaign and continue blogging to earn an income. I need to believe I can and I will.

Strengthen my Muscles– I have seen a physiotherapist and have some small exercises to practice. They are a struggle and I cant always do them but I hope to strengthen my weak muscles and eventually get into the swimming pool in the second half of 2016 to try some gentle water walking.

Electric Wheelchair and Adapted Home– I plan to get an Electric Wheelchair to enable me to go to school with my daughter some mornings and have more independence when I am having better days. I was assessed on the NHS for a wheelchair however our home is not suitable. I was told once we have a home with ramps and doors which are wide enough I will meet the criteria for a powered wheelchair. Therefore my goal is to move into a home in our current village which is wheelchair friendly. We have settled in our village and I don’t want to uproot my daughter. She has built friendships and loves the local community as do John and I and so in 2016 I hope to move to a more suitable home and get a powered wheelchair.

So this is my plan. I will work hard to achieve all 5 goals. It is not going to be easy and will take months but if I have a plan then I can work towards it and by the end of 2016, my quality of living and my family’s life could be a while lot better.

Fingers crossed

Angela x

 

16 Comments

  1. Lots to look forward to!! I think I am most excited that you will be getting a new endo! Since our quality of live is sooo dependent on the quality of our doctors, this is a big deal! I think the endos treating you have been doing a terrible job and I know a better endo will mean an even better and healthier Angela! I’ve watched your blog grow so much this year, and it had helped many others with adrenal insufficiency learn and know what to expect. You’re doing wonderful! Have a happy new year, and may we keep learning, growing an helping others in spite of AI! ? ?

    1. Thanks Michelle. This has been an amazing process and I am looking forward to potentially seeing someone with fresh eyes and experience of the Adrenal Pump. Also thanks for your lovely comment. I get so many messages on social media saying thank you or saying it is helping, not just from patients with AI, but also mothers with AI kids who don’t understand how it feels and find what I write useful in helping their kids so I’m glad this helps people. I hope to share my Journey in the coming month and throughout 2016 and head towards a better quality of health.

  2. It is actually really nice reading some 2016 goals with a different reasoning behind it. Your goals are fab and I wish you all the luck in the world to achieve them! I really hope you get the treatment you really need to allow you to enjoy so much more with your gorgeous daughter! xx

  3. Those are really good goals Angela. It is interesting to read more about you and understand more what you are going through every day. Focus on getting better is the most important goal for 2016 so you can cut those trips to the hospital. I also need to be healthier and loose some weight so I’m with you with your first goal. I really wish you can achieve all your goals. I’m sure having an electric wheelchair will make your life much better. 🙂 x
    P.S.: I like the new theme. Your blog looks really nice!!

    1. Thanks Franca. I will be losing weight. I have a huge plan and am so excited. It’s great to hear you like my new blog theme. thankyou. It was a big decision but I’ve changed it and hope to stick with this now. Angela

  4. Wow what a lot to work on this year. I wish you so much luck with making progress throughout the year on these goals,. I really admire your positive attitude and focus. Finger crossed you get to see the right specialist soon and getting into an adapted house.

    1. Thanks. I have to be realistic and set super goals if I want to blog professionally and I’m totally seriously. it’s just going to be a slow start this year.

      Angela x

    1. Thanks Laura. This is going to be my year. I have two different plans and will persist until I get this pump. My health is going to be way different than the end of the year and I’m really excited. Angela

  5. Good luck with it all Angela. Let us know how you get on after your appointment on Thursday. I’d never heard of AI before reading your blog and it’s interesting reading about how it effects you, etc. I like finding out about new things.

    Laura x

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