Dear Friends,

On  Monday ,21^st February 2011, during an intense thunder storm,

Lily Korst passed away in the arms of her beloved partner and family.

Lily walked through life with such grace, purpose and a love that was deep, pure and protective.

Lily faced the many battles in her life with courage, intelligence, humour and dignity….

Lily continues to express these qualities… her progress continues….

Lily has a destiny to fulfil.

It has been an absolute privilege being a part of your journey

Love always

Damien, Mummy, Robert, Maren, Grandma, Griffin and  Sophie Lily and all your family and friends.

_____________________

”The freer step

the fuller breath

the wide horizons grander view

The sense of Life that knows no death

The Life that maketh all things new”

This week I am going to introduce you to my Mum, Liz, to share a bit about herself and her journey from when I was diagnosed with CF. I adore my Mum and at the risk of sounding like a total suck up I am so happy that she is keen to share her story because Mum and I are a team. We go together like birds of a feather! Here she is….

A little bit about Lizzie….

My name is Liz, and I am a very proud mother of two beautiful daughters, Lily 28 years and Maren 27 years. I also have two absolutely beautiful grandchildren, Griffin who is nearly 6 and Sophie Lily just two. I am married to a lovely man Robert, who is step-father to Lily and Maren and is such a wonderful support to our family, we couldn’t imagine life without him.

A little while ago now I mentioned to Lily that she hadn’t written anything on her blog for awhile to which she replied “Mum I don’t always want to think about CF!!!!!” I realized she had probably written as much as she needed to at that time and even if she didn’t write another article the articles she had written were honest, relevant and timeless in her sharing of life with chronic illness.

For quite awhile I have wanted to write about my experience as a mother of a child with CF , but I have found it remarkably difficult to open the door to some of those memories.

How did you find out Lily had Cystic Fibrosis…..?

Lily was born on a hot summers day in Sydney, Australia. A normal pregnancy and birth and I was in absolute seventh heaven. She was beautiful with white wispy hair that defied gravity and the bluest eyes. Her father and I were so proud and happy with our little daughter… life was wonderful. Lily had just started smiling at six weeks when the hospital rang and asked me to come back for another heel prick test (a standard procedure given to newborns to detect certain illness). I wasn’t really concerned because she seemed to be thriving and saw this as an opportunity to show off my beautiful baby. All my family were in Brisbane and I didn’t really know many people in Sydney. So I dressed her in her best dress and off we went. I was absolutely devastated when the pediatrician started talking about testing Lily for this disease called CF, and explaining how serious this was and that if she had it they didn’t know how long she would live … perhaps two years but not much longer that 18 years, the life expectancy at that time. My life would never be the same again. I left the doctors office and walked in a daze for hours…..I realize there is no easy way to tell a parent such terrible news….however I think it was such a shame Lily’s father had not been asked to join me for that appointment as I desperately needed to be supported.

What was your journey after diagnosis?

Having a baby is such a transforming experience I felt like I was a different person, a better person. I couldn’t believe how much I loved this little baby and was feeling very happy. However when Lily was diagnosed I felt intense grief, the tears flowed for months and if I wasn’t crying I felt paralysed with fear and panicky. Though my husband was very loving and supportive I felt so alone, guilty and basically terrified.

But if the lights had gone out for me it was Lily who gradually turned them back on again. As the months went by her little personality and obvious joy for life asserted itself and her father and I were irresistibly taken along for the ride by this little force of nature.

What would you like to say to a parent whose child has just been diagnosed with CF…..

Be kind to yourself. I look back on the young woman/mother I was with such compassion and love. This is the mother whose first reaction was to think “But she’s in her best dress??” I still don’t know what to say about recalling that time, it is very personal, except that with the distance of almost thirty years I see a young mother who really was trying her very best to care for her child, her marriage and herself. I would just like to take that young woman in my arms and give her such a big hug and reassure her that this journey will deepen her sense of life and love in ways she could never have imagined.

The physical care, knowledge and understanding of the treatment relating to CF is very daunting to begin with … but given time, routines are established which will become habit. At this point parents become quite expert at reading their child’s comfort levels and well being. You’re a team. I know over the years I have had to be Lily’s advocate, often I felt very inadequate. In the hospital setting there will be many different people, positions and personalities which can be very intimidating however a parent has the right to have their questions, queries or concerns answered. You have that right. There will usually be someone you feel comfortable talking to perhaps a social worker or CF Co-ordinator, nurse or doctor. Lily has taught me so much in this area, she is a force to be reckoned with as many CF’s are who have been hospitalised for long periods. They know themselves better than many of the staff who are constantly changing around them. Lily remains calm yet speaks her mind. I am often in awe of her in this regard. She is courageous and brave.

I am so grateful for the care Lily has received, we often say how lucky we are that we live in Australia where the best possible care is given to patients regardless of their income. I am especially grateful for nurses who really are like the closest thing to family while in hospital, especially for the little ones.

So there you go, straight from Mum’s fingers! I hope you have enjoyed this post, there is some more from Mum to come so stay tuned. And if you have any questions for either myself or my lovely Mum than please feel free to email us or leave a comment below and we will reply quick as a flash!

Lx

I have been working on some new posts from my hospital bed and at the moment all the signs are pointing to doing some stuff on the shock of diagnosis. I received an email this week from a new Mum who had recently had her beautiful 4 week old baby diagnosed with CF. As you can imagine, the heartbreak can be overwhelming.

I had a good chat with my own Mum about my diagnosis and how she got through life after hearing those words. Mum has started recording her experiences so that we can do a series for Mum’s who are living through the trauma of a serious health diagnosis for their child. Obviously I have never had a child and have not gone through this experience so I am not well placed myself to be able to share my experience on that matter so I will leave that to my Mum. I am, however, well placed on having had a mother who has battled through a diagnosis and aimed to create a happy and positive child no matter what. I HONESTLY believe that a mother (and father) who guides her child to be a positive and happy person despite their problems is one of the BEST tools a mother can give her child. There is now good medical evidence that shows that a patient with a positive attitude is more equipped to better deal with their health issues than those who don’t have such an attitude. Creating a positive attitude in a child starts with the parents. So I will share with you the words that I shared with this Mum who reached out to me…..

I can only imagine how you are feeling at the moment. I am on the other side of the spectrum, I have never had to go through the sadness of having your beautiful little one being given what feels like a death sentence. It must be heartbreaking. I know the day I was given the diagnosis still haunts my Mum. You have to know that you will get used to the idea of CF, you will have some happiness again, you will be able to create beautiful memories. You will laugh again. There are a few things that you need to know now that will make a difference to both your life and the life of your little angel.

I know you are VERY angry and scared. It is totally natural. And you shouldn’t beat yourself up for feeling like that. You have a right to be angry. But you also need to understand that this is NOT your fault. This is not caused by anything you have “done”. At this time you need to just take one day at a time. When you feel angry, you need to just allow yourself to be angry for that moment. If you just give it it’s place, rather than trying to deny it and force it away then it will lose its hold on you much faster. It is the same with sadness and grief. Just be in the moment, say to yourself, “yes, I am sad right this moment but I will be OK”. Don’t beat yourself up for feeling these feelings; grief, sadness, anger, just acknowledge that you are feeling them, let them have their moment and then keep going. Do something to break the thought. Preferably something positive, something small like making a cup of tea, putting on a song that always makes your happy no matter what, etc. I know it sounds stupid but you will feel happiness again one day. This initial deep sadness and grief will ease somewhat. It is about giving grief and sadness its place while aiming for a positive outlook.

There will always be a some sadness. That is the nature of illness. But the best thing my mother could have EVER done for me is to teach me to be a positive person. It has been the best tool in my fight against CF. When you are sad remind yourself that you are going to be a positive role model for your son, you will show him how to be a positive and happy person no matter what his circumstances. That is honestly the best tool that you can give your son for the future. It takes practice and it is about changing your thought patterns and attitudes but it is TOTALLY possible. You are the best person to teach your son that life is worth living and that you can find joy and happiness in the smallest things. I know you won’t feel like it is possible at this time but it will happen.

As someone living with Chronic Illness, I know that the above information applies whether you are living with Illness yourself or whether you have a loved one or child who has just been diagnosed. It takes time to get used to your new reality but you will smile again.

Mum has written the first half of her post so I will post that very soon. There has been a bit of a delay between posts due to my being back in hospital. I am just in for a much needed tune up and am looking forward to getting out of here very soon. Until then, I am having fun doing some writing for TLWC and I am looking forward to sharing these stories and insights with you!

See you soon!

Lx.

For more information about TLWC check out the first TLWC post or the ABOUT page

Well, doesn’t time fly? Where has it gone? It has been almost a year since I have written on this site and I cannot believe it – it has flown by. Lots has happened, which is the norm when you have not written in so long! So what have been the highlights? Well, many things. Spending time with family and friends, learning and studying, enjoying life! The pics below are some highlights of 2010 so far….. So why start writing here at TLWC again? Good question!

I am in a different place to where I was last August. I am still living with CF (obviously) and so I have spent a lot of time over the last year thinking. About CF, about living with CF, about everything that comes with living with Chronic Illness. Chronic Illness and Injury really changes the work/rest/play dynamic in your life. And while I consider myself a proactive and conscientious CF “survivor” I also have times when I struggle with the unique issues that having CF bring to my life. I have come to terms with the facts of CF but sometimes the “lifestyle” issues that come with having CF really have me stumped.

Some of those “lifestyle” issues have included working, studying, having a career as well as a life outside of CF. I have spent many years trying to find out what I want to do with my life, what I want to be when I grow up. You know, the usual!! Having CF has made this decision making process much harder than normal. I had so many things I wanted to do and be but my body was not able to cooperate. When it became impossible to work a 9-5 anymore I had a dream of being able to work from home, productively, happily. I have searched high and low for a business or job that I could undertake from home. Without luck. If you want to work and are not able to do the 9-5, like many people with Chronic Illness or Injury, then you need a plan, you need to get creative and you need to realise that you are not going to be handed an opportunity, you have to CREATE one. So what to do? How to do it? I researched, soul searched and head scratched. After a few investigations, and much sulking, I have finally got myself a plan. I finally got clued in and changed my thinking process. Thank goodness!

So that is where the new chapter of The Life We Cherish comes in. I am now trying to work towards that goal of finding the right fit for me, in work, in study and in life. TLWC is about inspiring those with Chronic Illness and Injury to be able to live a happy and fulfilled life. I REALLY do believe that we can achieve our dreams, whatever they may be, we just have to be creative in how we approach them. We have to start working smarter, not harder. TLWC will still be about inspiration and motivation as well as about how to deal with the day to day “stuff” that Illness dumps on you. A whole bunch more of practical information on how to work towards your goals AND survive day to day. I am, however, going to make a couple of changes to TLWC. In the past I have written this blog as only “Lily” to protect my privacy and my loved ones who are mentioned on here but I am now going to open up the TLWC to my life and my families life. My mother and I have decided to work together on a couple of articles from a mothers perspective, how she feels, how she copes and so on. Mum is already chomping at the bit to get into it!! Go Mum! I have also got a list of people I personally know who inspire me in my day to day battle against failing health. They live with either Chronic Illness or serious, life-altering injury and they have taught me a whole lot about fighting the good fight. I am NOT going to promise to write 3 times a week but I will promise to write regularly about the practical and unusual ways that I go about having a life while living with health issues. TLWC is about my life  but I am sharing this because I know I am not the only one who struggles with the issues that your health can throw at you. I am not alone. I think that we can all learn from each other about how to deal with health issues and still have a life. I am just wanting to do my bit. If it helps just one person than my work here is done….

And I am always super excited to hear from TLWC readers so email anytime!

Lx

Finally! Here is the final part of the Medical Workbook series. I have been using my Medical Workbook this week quite abit actually, a bout of Whooping Cough has hit some members of my family and I have used my MW to look up immunisation/booster shot information as well as my medical history (I had Whooping Cough when I was 15). As always, having this information at my fingertips makes managing a stressful situation much easier. In this final part of the Medical Workbook we will look at keeping a record of your Medical History as well as an Admission/Clinic Outcome Journal.

Medical History

A well recorded Medical History is a very usual tool for people who have multiple health issues and any number of other complications. It is never too late to start a Medical History. A good way to start one is to roughly list the year that you first experienced any health problems and the details of that problem and then work your way back from there, giving a rough yearly outline. You will forgot things, you are not expected to remember everything at once, don’t worry! Instead write down what you can and perhaps put it into a word document that you can update easily when the details come to you at a later occasion. Once you have an outline of any issues, complications, problems or newly introduced treatments/medications that you have come across in the past you can then look at keeping your Medical History up to date. To do this I recommend anytime something new comes up, whether it be a new treatment or health problem, that you record it as soon as possible. At the very least look over your Medical History a couple of times a year and make any updates and then print out an updated copy for your HW. You don’t need to go into massive amounts of detail. You just want to create a document that can be looked over quickly and easily if an emergency arises or to update a new member of your Medical Team. Your History may look like the following….

2006

• New Pain Management regime started in Feb.
• C. Difficle diagnosed in May, cleared by June. 1 week in ICU, 7 weeks on Vancomycin.
• Seizure in November. Possible causes low O2 or hypoglycemia.
• New portacath inserted in right arm.
• Whooping Cough booster in August.

You get the idea. You just need a brief timeline that can be scanned quickly. If someone wants further details they can look at your Admission/Clinic Outcome Journal, Medication list etc. Having an up to date Medical History helps you keep on top of things during clinics or admissions and can help you get details quickly. I use mine to jog my memory when I have forgotten when something happened or if I confuse dates etc. Once again, this is not an exercise in “how sick you really are”, don’t let your list get you down. Remember knowledge is power and being organised is can a life saver. And doctors love a pro-active patient!

Admission/Clinic Outcome Journal

Hospital admissions and clinics are part and parcel of your health journey and I don’t know any patient that does not have a diary of some sort to record dates and times of appointments or admissions. An Admission/Clinic Outcome Journal is an extension of that. Whether you simply use your current diary or have a special diary is up to you. I have a Moleskin diary that I use to record everything. And at the end of every year I archive that years journal. Throwing it away would be ridiculous, I have had to refer to old diaries many times to be able to find specific details, dates or times. It is also useful for looking at symptom patterns. So what should you record in your Journal? Anything and everything that could be needed in the future. For admissions I include:

• What the admission was for.
• The dates of the admission (including admission and discharge).
• Any issues or problems during the admission.
• The details of any thing important including the doctor that you dealt with, the date and outcome if resolved during the admission.

If your Medical Team sends you a discharge letter when you get home keep a copy of that with your MW also. It can help you keep track of medication changes, treating doctors and so on. For clinics I often include the following information….

• Medications needed from pharmacy.
• Medication changes (doses, new medications, etc)
• Current symptoms or issues (more nausea than usual, cramps, etc).
• Any forms that needed to be filled out or details that need to be changed.
• Any other news or updates. Your doctors also like to hear any good news that is going on in your world too, if something exciting has happened, let them know. When you have such a close “working” relationship with your team it is nice for them to hear about any of your wins. It really does give them a boost too.

Whether you include this information in your daily diary or separate in your MW just make sure that you keep it updated regularly and keep it somewhere that is easily accessible during an emergency.

Well, that concludes the Medical Workbook series! This is not the be all and end all of health management and you do not HAVE to create a Medical Workbook to be a good patient, the idea is for you to take any part that could help in your health management and create something that will fit into your life. Being proactive about your health care is quite empowering and really shows your team that you take your health seriously. How you do it is up to you, as long as you stay positive and organised your health can only benefit.

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or the ABOUT page. You can find also find out more from the ARTICLES page.

To go over the Medical Workbook series, Part 1 can be read again here and Part 2 here

Well the feedback from the first part of the Medical Workbook has been very encouraging. I shall waste no time in getting onto the next part…..

Daily Routine Outline

A Daily Routine Outline is very handy for a number of reasons. When you are not feeling well and your mind is elsewhere it can be handy to have a guide of what you need to take or do next. I have used it on days when I can barely get out of bed and my mind is not functioning as it should. It keeps me on track with medications and treatments which is great because it can be a real problem if you have medications that need to be taken at set times and being behind the eight ball can really throw out your medication and treatment regime. This can be risky. A Outline can spare you that dilemma. It is also useful for showing your team or other new medical personnel what you do and when. It also shows that you are organised and proactive in your health care. Having an Outline puts it all together so that you don’t have to struggle through a day, stumbling from one set of meds to the next, not quite on top of any of it. You have something that will help you take your meds and treatments at the right time as well have a useful tool for showing people what your regime is. A good Daily Routine Outline would……

• Be set out in a time table format. Starting with the first treatment or medication that you take in a day and at what time you take it. For example: 8.30am – Ventolin and Atrovent (nebulised). 9am – Morning Medications, check BGL, take Insulin (Protophane 32 units). 10.30am Monring tea – Calshake.
• Include any thing that you need to do in a day whether it be Blood Glucose Levels, Nebulised Medication, Physio treatments, exercise and so on. Any thing that you do in your day to help manage your health. This will give anyone who needs to know a good guide to what you do in a day to keep on top of your health.
• Be a GUIDE only! Remember this is an example of your daily routine. It is for keeping on top of matters when you are not feeling the best and for giving your Medical Team an idea of your daily regime. Do NOT create a regime and feel that you have to stick to it every minute of the day for the rest of your life!! Do not stress yourself out, you need to be flexible when living with any sort of illness, this is not something to add more pressure to your day. It is for being useful on days when you are not at your best or to help show others what your day generally looks like.

I have also found this useful for times when I have to add a new treatment or medication to my routine. I can look at where it will fit in best for maximum benefit. Like I said I have also found it to be a life saver on days when I wake up and cannot remember who I am and what I have to do next!

Health Issues List

Another important list for your Medical Workbook is a list of Health Issues. Once again I have created this for emergencies and so on. Times when you are not well enough to go through the list of problems you have or when you need to give a lot of important Health information to someone quickly with out missing anything critical. You only need to keep this brief, it is not a Medical History, it is just a list of known problems that Medical Personnel need to know in the event of emergency. Your medical List should include:

• Any diagnosis that you have. For example: Cystic Fibrosis diagnosed at 6 weeks of age. Diabetes Type 2 diagnosed at 19 years old. Chronic Pain Syndrome diagnosed 2005.
• Any recent surgery or procedures. For example: Portacath inserted in right arm in 2005. Embolisation on lungs in 2001 and 2009.
• Any Infectious Diseases that you have or had. For example: C. Difficile Colitis diagnosed in 2006.

Having this vital information close to hand gives a Doctor the necessary, essential background information they need to start treating you. I know for some people this list may be long, mine is. I have gotten down by looking at my discharge letter from hospital that lists all my Health Problems. It is not pleasant reading but I have had to teach myself that I am not my Health Problems. They do not have to define who I am. I am a fighter and these Problems will not get the best of me. When I was able to deal with that then I was able to create the List knowing that it was for good Health Management. And it certainly saves a lot of time and effort during a time when both are in short supply!

So that is Part 2 of the Medical Workbook. Having these Lists included in your Workbook will help keep you on top of your Health Management as well as serve you well in the case of emergencies. Part 3 will give you a guide to keeping a Medical History as well as creating an Admission/Clinic Outcome Journal. These will help you to further be prepared for emergencies as well as help you keep on top of your Health by keeping brief records that can help you problem solve new issues and so on.

If you have any questions about your Medical Workbook or Health Management Plan please do not hesitate to email me. Look out for Part 3 in coming days. Part 1 can be read again here. Until next post….

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES

OK, here we are. This week we will be focusing on a very important part of your Health Management Plan (HMP)….. the Medical Workbook. This week I will show you the items that will make up your Medical Workbook which is a very necessary part of your HMP. This is your “go-to” tool for emergencies, for your Loved Ones to use in an emergency and to help keep track of your medical history as well as your medications. Your Medical Workbook can be a folder (display or arch lever) or a notebook. Anything that you can easily update and carry around. I keep mine in a display folder, keeping document templates on my computer for quick updates.

Today I will be focusing on the first two parts of your Medical Workbook. These are your Contact List and your Medication List.

Your Contact List

A Contact List is an essential part of being a “Professional Patient”! Every Professional has one and as a “Professional Patient” you are no different. A Contact List of everyone and anyone who has a hand in your health care is very important for obvious reasons. In an emergency you need to have those numbers close to hand and in one place. When you, or if you are unable to, when your Loved One has to get in contact with your medical team, your doctor, your physiotherapist or your hospital it is very handy to be able to turn to one page and be able to start dialling. Items that I include in my Contact are:

• My Consultants/Specialists – no many how many you have! I have 4! You need to be able to get in touch with them all if need be. Include all the numbers you have for this person, i.e. practice number, emergency number, mobile number, extension number, secretaries number, etc.
• Your local General Practitioner (GP) – include week day number and emergency or weekend numbers.
• Your Physiotherapist – as above.
• Your Chiropractor – as above.
• Your Medical Team – this may include your Team Coordinator, they are often your first port of call in an emergency as they can get you direct access to your Medical Team QUICKLY.
• Your hospital – the general switch board number and your ward number.
• Your pharmacy – both Hospital and Private.
• Anyone else you see for some aspect of your health including massage therapists, acupuncturists etc.
• Your Family and Loved Ones – Although you might know your family contact numbers it is important to have a comprehensive list of your next of kin so that if there was an emergency and someone who doesn’t know you has to make these calls they will have it all together, in one place and can make those calls very quickly. Quickly being the key word here.

It may seem a lot but if you see a lot of people for your health then you need to include them in your Contact List.  My Contact List is rather long but it sure as hell beats trolling through an address book at a time when I am not really with it. It is also important to give a copy of this Contact List to your Parents or Loved Ones to have handy just in case as well as having one in a central, easily accessible place in your home (even in your car, if you want). And don’t forget to update it as often as needed. I find that keeping a Word document on my computer makes it easy to make changes and print out a new copy to keep in my Medical Workbook and to keep my Loved Ones updated. I put mine in table form and type it in large, easy to read print. I also keep a copy in my diary for easy reference. Don’t you feel more on top of things already?!

Your Medication List

Having an up to date list of your Medications is also another ESSENTIAL part of being a “Professional Patient”. Like anyone with health issues, if I had a dollar for every time I was asked to list my medications then I would be living on my own island in the Caribbean! And like anyone in the same situation, I find it very easy to forget some important medication here and there, especially when I am on at approx. 30 different medications and treatments daily. Having a Medication List that you update regularly does away with that problem. I have also found it useful when having to call an Ambulance to your home, instead of having to list your meds when you may not be coherent, let alone conscious, you or your Loved One can give them the List. It is also always handy for Clinics/Outpatients appointment or when meeting a new Doctor or other Medical Personnel. A thorough Medication List would include:

• Your daily Medications including dosage and how many times a day it is taken. I include the Pharmaceutical Name (and the Generic name if applicable) as well as the main ingredient (for example: Panadol – Paracetamol 2x500mg four times daily).
• The reasons that you take that Medication (for example: Panadol – Paracetamol 2x500g four times daily. Taken for chest pain.)
• A comprehensive list of your Allergies (to any Medications, foods and additives, tapes, adhesives, bees, whatever it may be) and the reaction you have to that item (for example: Ceftazadime (a antibiotic) – facial swelling, difficulty breathing, rash.)
• For the fun of it I also create a Daily Schedule Outline of my Medications including what I take and at what time. This is to give anyone who needs to know an idea of my daily schedule and the Medications I take and when. This is very helpful actually, I have used it to keep myself on track on days when I am not feeling the best as well as when a new Medication is added to my regime so that I can work out when I need to take it and with what else. More on a Daily Schedule Outline next post.
• I also keep a note of any changes in my Medication Regime so that if there are any problems or issues that arise I can go back to check if it could be caused by any changes in my Medications. This has proven to be an invaluable tool.

As a “Professional Patient” it is SO important to know what medication you are on and why you are on it. It makes your doctors job that much easier and can help you manage your health a WHOLE lot better. Knowledge is power and I have found it very useful to be aware of what I am taking and why. You are putting these chemicals into you body so you also want to know what the possible adverse reactions may be to that medication and what other medications it is compatible with or not compatible with. Talk to your Pharmacist or Doctor about these issues. Once again keep a copy of your List at home and in your diary. You will also need to keep your Prescriptions in one place so that they are easy to find. I also mark on my diary/calender when I will run out of Medications. This is important so that you are able to keep on top of your Medication stock and do not run the risk of running out of an important drug (especially during holidays or long weekends when Pharmacies are not open).

By just creating the above two Lists you will be a lot more organised as well as being more on top of your health issues. Feeling in control and on top of things will allow you to be able to do things you felt you couldn’t do when your health was taking control of your life. You are more likely to go places and achieve things that you would not have been able to do otherwise. And that is only a good thing.

Next post I will be writing about creating a Daily Routine Outline and a List of Health Issues that you manage. Once again, my goal is that by the end of this series of posts you will be able to create a fully functioning and effective Medical Workbook and Health Management Plan. Doing so will give you some freedom to go out and achieve those dreams that you have. To live a life where you manage your health, not the other way around! Until then…..

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES

OK, so things have been crazy recently and I haven’t been posting as much as I used to. I am back to a good routine and have been thinking about where to go next with TLWC. I have shared my thoughts and feelings on many issues with some practical advice thrown in here and there and now I have decided to go into depth with how to create a thorough Health Management Plan to help you keep organised and on top of your health issues.

A thorough Health Management Plan (HMP) will help lay the foundation for living a positive, fulfilling life with Chronic Illness and Injury. A good Health Management Plan will help you in cases of emergency,  help keep you on top of your medications and what you are using them for, assist you in keeping track of your medical history and appointment/clinic outcomes and much, much more. I have used my HMP many times and it has also helped my loved ones in cases where I was not well enough to convey vital information to medical staff. My loved ones were able to use my HMP to give medications, medical history and information on recent procedures. A HMP takes a bit of organising and management but the benefits far outweigh the effort you need to put in. In some cases it could be a life saver.

I will create a series of posts starting next Monday on creating and maintaining a Health Management Plan. It will consist of three posts a week and at the end of the series you will have enough information to create your own HMP. I hope it will give you more confidence in managing your health as well as give you the freedom to do things that you have put off because of your health.

A HMP will make it easier to manage and organise yourself as a “Professional Patient”…. I hope you find the HMP posts informative and useful!

I look forward to getting started. Until next week……

Take care, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES

Home Sweet Home. Ah, it feels so good to be home and to sleep in your own bed, to have a cup of tea from water that as actually been boiled, to be able to sleep in without having 3 dozen people tramp through your room before lunch. Oh, it feels good!! Real good.

I have a bit of routine that comes from spending too much time in hospital. When I get home with the massive list of things to do that I created to help beat boredom I find I get home, look at my list and am exhausted just reading it!!! In hospital I spend so much time thinking about what I would be doing if I was home at that moment, creating projects and coming up with ideas left, right and centre to implement when I get home. I have every intention of doing everything on my list immediately but the problem with spending two weeks in hospital is that your energy levels and strength are zip. Nothing. Making a cup of tea requires a sit down for ten minutes after. My legs are weak. My heart pounds after walking up the stairs. I am exhausted at the drop of a hat. Very disappointing when you have an idea in your mind of what you will do when you are well enough to do it. Another throw back of being unwell regularly is that you think that after a course of antibiotics and two weeks in hospital you will be well enough afterwards to climb Mt Everest. And when I was younger that was the case. After an admission I could go back to working two jobs and having a great social life and not miss a beat. Now days that is not the case. I am happy to be able to do the washing and meet a friend for lunch!!

In the past I have gotten frustrated with myself for what I saw as myself being lazy or just not motivated enough. I was pretty hard on myself which only made me feel worse. What I have learnt is that while it is OK to make lists and come up with grand plans for my post admission adventures, ultimately I need to take it one hour at a time, one day at time. I have learnt to check in with myself regularly and check if I feel up to crossing another thing of my list or if I need to sit down and have a rest for 10. I also don’t beat up on myself for not achieving everything on my list within 5 minutes. I do what I can when I can. I set myself little goals that when achieved over a week or so will cross one big thing off my list. I do not have the energy anymore to do big things in day and I am OK with that. I can only do what I can do and I am ultimately happy to be able to do anything.

So that is where I am today. Taking it one step at a time. Doing what I can. Today I might not have so much energy but tomorrow is another day and I am happy with that being the case. It is easy to be hard on yourself when you see people around you doing big things and you are struggling to have a shower but we need to realise that there is no point in looking to others for what you should be doing. You need to be kind to yourself and be happy that you are to do anything today.

So I will go hang out my washing and remind myself that I just got out of hospital, I don’t need to be Superwoman, I just need to be Lily and do the best I can do today.

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES

Spending a lot of time in hospital you learn the things that you should pursue and the things you should let go. It can be really frustrating to know that something is not right with yourself and for it to be passed off as nothing everytime you raise the issue. It may be an inconvenience for your medical team when you keep at it but if you are positive that there is something funky going on then you HAVE to pursue it. It could very well SAVE YOUR LIFE.

Several years ago that very scenario played out in my life. I had been sick for a good while. It was not my normal problems and I just felt something was seriously amiss. I brought it up every clinic I had for over 6 months where I was told that it was just the natural progression of my disease. That was all good and fine, I knew that my Illness was degenerative and that it was going to happen but deep in my gut I knew that something was very wrong. I took the usual steps to trying to find the problem and fix it but when you are stonewalled everytime you raise the issue it can become very frustrating. When I knew that my doctor could not help me anymore due to the fact he didn’t think that things could be improved I decided to change consultants. This was a very tough decision and was not an easy process but after several months it happened. As I got to know my new doctor and his way of working I realised the importance of an open dialogue between a patient and their doctor and medical team. It totally changed how my concerns were dealt with and that made me feel a whole lot safer. Within months of changing doctors we found that I had contracted a possibly deadly infection. I had probably had it for at least 6 months. It almost killed me. I know if I had not pushed and pushed and then used my right to change doctors then I probably wouldn’t be here right now. It is as simple as that.

That experience taught me many things. Firstly, know and listen to your body. If you aren’t aware of your health then it makes a doctors job that much harder. If I had of just ignored my feelings I would be dead. Secondly, I learnt to stick to my guns. I knew that something was wrong and if I had of just swallowed every fob off then I would have paid the ultimate price. Keep at them. Thirdly, I learnt that you need to be willing to take action if you are not being heard. You need a doctor that listens to you. Keep trying until you find one. It will take time but you need a doctor that will communicate well and treat your relationship as a working partnership. Because that is what it should be. And don’t be afraid to remind them that it is you that has everything to lose, not them, when you feel like you are not being acknowledged as the expert of your own body.

I am writing this post today because I have come up against another “Stick to Your Guns” problem and once again I am sure I have no doubt annoyed my team with my persistence but it has paid off because I was right, there is a problem and if I had of just listened to the “it’s OK, it’s normal” routine again then I hate to think what the outcome might be. It is really important to be an expert on yourself. Know yourself. And fight for yourself. You won’t regret it. Guaranteed.

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES