Elise's Diary

[irish]

Craig, I remember Elise and all the posting she did. She was such a strong girl and endured so much while having such a good attitude. I am so sorry to hear that she succumbed to these diseases. You and your family are in my prayers during this difficult time. Thank you so much for telling us. Irish

[genko_b]

So sorry to hear of Elise's passing. She was such a brave girl and you both were an inspiration to us all. Our hearts and prayers go out to you.

Take care,

Genko

[Bucky]

Craig - my sympathy to you and your family.  Elise was such a special young lady.  She knew more about medical procedures than any young person should have to know.  She handled all the doctors appointments and procedures with such maturity from a very young age. 

You can be proud of your daughter and her courage to deal with all the medical issues she's had to deal with through the years.  Both you and your wife were such a blessing to Elise.

Rest in peace, Elise . . . we will always remember what a special young lady you were.

Craig, may you find peace in knowing you did everything you could to help Elise on her medical journey through all these years.  Elise knew she could depend on you and loved you dearly.

With sympathy & prayers,

Bucky

[susanep]

I have been reading Elise's Diary, and I am so sorry to hear of her passing. She sounded like a real trouper in all she endured, and she loved so much.

susanep

[Confused]

Craig,

I do not know if you still read this but on the chance you do have you thought about a book?  You have alot of information dealing with emotions, actual events and so much that perhaps you might be able to reach out to someone who will see what you have down and it could hit the right person and may be the push on the right Dr., scientist and set someone to go after this disease the right way.

There was a good purpose for all of this and I do not know what it is/was/will be.

Just a thought

[craigm]

A book sounds like a good idea,
would probably help me to get through this.....but I wouldn't know how to even start.

Any ideas would be greatly received.

Craig xx

[Confused]

You might start by writing your memories of Elise and her battle with Sjogren's in the form of a journal.

As you put your memories on paper, more memories will, no doubt, come to mind.  I suspect once you get started, the floodgates will open and you will fill many pages.

I have heard of groups of new authors who meet to share ideas and experiences and have also seen announcements in local newspapers advertising meetings similar to those of other types

of clubs.  I don't know whether England has similar venues for new authors but it is worth investigating.  I will keep looking here and pass on ideas I come across.

[irish]

I am going to suggest that you make headings to your journal entries. Just a thought but maybe a short journaling of Elise prior to diagnosis...when she wasn't sick and then the symptoms that precipitated a doctors visit. Then a section of journaling or telling the story of the doctors visits that took place and led up to diagnosis.

The next step could be the treatment the first number of years and how they worked. You can put down your feelings and Elise's feelings and attitude during this time. You could then divide the journaling into the times of certain treatments or during certain years of her life. She started out a youngster and then a teen so there must have been so many challenges in those many years that were not only medical but emotional and coping for you and for here.

I think this is a start for you or something you can bounce your ideas off of. So hard to write sometimes, but I think once you get into it you will just have ideas thoughts flowing that need to be written down. Good luck with this endeavor. Elise will be proud and you will do this well. I will keep you in my prayers. Irish

[ktfabian]

Craig,

I am so sorry, I just heard of Elise's passing today. She was a very special, very strong girl. I still have the glass Angel and worry box she sent me when I'd sent a package to her. She told me to put my worries in the box when they got to big and I still do it to this day.

While I know this doesn't make it easier for you and your wife, your beautiful daughter touched many lives, including many of us here, and she continues to do so. I hope you find some peace in your memories.

My very, very deepest sympathies,
Tracy Fabian

[Confused]

bump

[craigm]

Thank you all so much for your kind words....it really does mean so much...

I has been just me and Elise for the last 5 years or so.....Mum ran out on us so me and Elise became best friends too.

I always felt as though I was helping Elise......But at this moment in time..and the way I am feeling I think she was helping me more.

I am only too pleased for anyone to help in anyway at all

thank you all

Craig xx

[araminta]

Craig, I am so sorry about your loss.   I really can't imagine what you must have gone through in the past years.

I agree with others that writing can be very therapeutic, but would add that perhaps it might be an idea to also consider other ways to help yourself.   There is a lot of good advice online, and of course everyone reacts differently in these situations, so not all the advice would apply to you.   But things like looking after your physical wellbeing (getting out of the house, good diet etc), not being afraid to ask for help, noticing things that might lift your mood and making sure you do them  - even little things like having a shower, gardening, they all can help.

I think taking one day at a time is probably a good idea too, and not expecting too much of yourself.   Treat yourself with kindness.

The book idea is great, and I think it's possible to self publish online now, though I don't know the details of that.

I hope you keep posting here, this is a very kind and supportive community.