Friday 14 May 2010

Be patient in affliction . . .

"Be patient in afflictions, for thou shalt have many but endure them, for, lo, I am with thee, even unto the end of thy days."

D&C 24:8

So which do you want first? The bad news??? Or the good news????

Let's start with the good shall we. I do not have Osteo Arthritis, which means I will not be needing a hip replacement.

Now on to the bad. Although the x-ray of my hip did not show any signs of Osteo Arthritis, it did show an enlargement of the bone, which indicates Paget's Disease. The way the Doctor explained it to me was this: Normally your bones lay down new bone each day and shed old bone. This process (referred to as remodeling) is essential for maintaining the normal calcium levels in our blood. In bone affected by Paget's disease, the bone remodeling is disturbed and not synchronized. As a result, the bone that is formed is abnormal, enlarged, not as dense, brittle, and prone to breakage.

They don't know what causes it, and there is no cure, although they can control the progression of it, I believe, through medication. Paget's disease commonly causes no symptoms and is incidentally noted when X-ray tests are obtained for other reasons. It affects roughly 1 percent of the population. Paget's disease can cause bone pain, deformity, fracture,and arthritis, with the bone pain being located in the affected bone (s). I have pain in my lower back, pelvis, hip, knee and ankle, mostly on the right hand side, but now moving to the left. Enlarged bones can pinch adjacent nerves, causing tingling and numbness. Bowing of the legs can occur. Hip or knee involvement can lead to limping, as well as pain and stiffness of the hip or knee.

This explains a lot. Over the past six and some years I have never been without pain, but it has been getting progressively worse. I have good days, and I have bad days. Lately I have felt like a nerve or something is being pinched in the top of my right leg and across my pelvis, causing me a lot of discomfort and rendering me unable to take more than baby steps at times. It has been very disconcerting.

art of liz lemon swindle Pictures, Images and Photos

There have been many days, particularly when I was working at the Manor, that I could barely walk at the end of the day. It was all I could do to make it home and then I would literally have to crawl up the stairs I would be in so much pain. It is not so bad now that I do not have to spend so many hours on my feet at a time, although I am still in pain daily, and like I said, some days are better than others.

I now have to go and have a bone scan to see how far it has progressed. I am hoping that it is localized to the bottom half of my body because if it has spread any further, it can begin to affect my sight, hearing, and heart.

Whilst it cannot be cured, it can be treated, depending on how far it has progressed. The outlook is generally good, particularly if treatment is given before major changes in the affected bones have occurred. Paget's disease occurs most frequently in the spine, skull, pelvis, thighs, and lower legs. In general, symptoms progress slowly, and the disease does not spread to normal bones.

I cried a bit last night. There is a part of me that is very afraid . . . then again, there is another part of me though that is relieved. For six years I have been going to Doctors trying to find out what was causing all this pain that I have been experiencing daily. There have never been any answers, and I think a lot of the Doctors have thought it was my imagination . . . never mind that it felt very real to me, and was at times quite debilitating. I am so glad that now there is a name to it and that is is not my imagination.

I will be having a bone scan soon to determine the extent of it's progression and where to go as far as treatment goes. I am praying that it has not progressed too far. I think though, that this pretty much effectively ends my career as a chef, as I doubt that I can ever bear to be standing for that long at a time ever again. Having had this time off has really been instrumental in showing me exactly how much pain I was having to work through each day. So not having to work on my feet like that again, is not exactly a bad thing . . .

This has been my anus horribilus . . . even the Queen has one of those from time to time, so I am not alone. I am so grateful for my faith and the strength that it has given me over these past months, and still renders me.

"There are some years in our lives that we would not want to live again. But even these years will pass away, and the lessons learned will be a future blessing."
~marjorie pay hinckley

There is a silver lining. It could be something so much worse. I must look on the bright side! It's not cancer, and I am not going to die. (Not yet anyways!) I am sure there is a purpose in my life for even this.

I made us a nice corn chowder for our supper last night. It has been so cold for May. Although it was sunny for the most part yesterday, with only a few cloudy periods and showers, there was still that cold wind blowing. It blows right through you. I will be glad when the days begin to get a bit warmer. Life always seems a bit better on a sunny warm day doesn't it!

*Sweet Corn Chowder*
Serves 4
Printable Recipe

This was always one of my family's favourite meals. I often made it after church. It was quick, easy and delicious, not to mention economical!

4 slices smoked bacon, chopped
1/2 leek, trimmed, cut in half lengthwise, washed well and then cut into half moons
2 large baking potatoes, peeled and cut into 1/2 inch chunks
1 bay leaf
1/2 tsp summer savoury
salt and pepper to taste
boiling water or stock to cover
1 (425ml) tin of creamed style corn
1 cup of milk
a lump of butter

Heat a heavy bottomed medium large saucepan over medium heat and toss in the bacon. Fry until crisp, stirring from time to time. Add the leek and cook for a few minutes longer until tender, stirring. Add the potatoes, bay leaf, summer savoury and boiling water to cover. Bring to the boil and then reduce the heaet and simmer gently for 10 to 15 minutes, until the potatoes are fork tender. Stir in the creamed corn and the milk. Gently head until heated through. Season to taste with salt and pepper. Stir in a lump of butter and then ladle out into heated soup bowls.

Crisp buttered whole grain toast goes very well on the side with this!

Over on The English Kitchen today, delicious Bacon Chops with Fried Potatoes.


  1. Hi Marie,

    So sorry to hear you have been in so much pain for so long. A change of doctor has been significant in you getting the answers you need. Hopefully when you start medication, the pain will ease and your quality of life will improve greatly. It is a shame you cannot continue to be employed as a chef. But the new road you are one will bring fresh opportunity beneficail to you body and your fabulous talents.
    I will keep you in my prayerss



  2. Oh Marie,

    I am so sorry. When I began my back pain battle I was terrified I had Paget's as it is in my family. I am so sorry you are so affected. I am not a carrier but my Uncle was and he responded so well to treatment. I hope that this is possible for you.

    Whatever road comes next I pray that you are much more comfortable. I have a feeling that you will be exploring your creative side much more in the times to come.

    I love sweet corn chowder. I might make some tomorrow as I have a bucket load of driving in the morning and we are having an autumnal cold snap. Thanks for the reminder.

    Consider yourself hugged and loved.

  3. See? God was STILL doing his best for you, even when you were losing job and home in Kent. He saw what was happening and He took you out of there. You were directed to the north-west and, bingo, you get diagnosed! Your faith is the most important tool you have in the box. You can still be a chef......through your fingers on keyboard.

    And as for cooking at home? There are ways and means. If standing's a problem, sit. Ironing? Sit. Your doc can make a referral to an Occupational Therapist and he/she can provide all sorts that will make life easier and allow you to carry on as normal.

    Don't be afraid. There's no need.

    love, Angie, xx

  4. I'm so sorry to hear about your condition.

  5. Dear Marie..
    I'm so sorry to hear about your illness. You have put up with it for so long and there is nothing worse than the doctor not finding an answer to your pain. I can imagine how you must have suffered whilst on your feet all day at work. I hope and pray that this new doctor can get you some relief and halt its progress too.
    Gosh! You have put up with it for so long! I agree with one of your friends who said you needed to move to the North West to get a correct diagnosis.
    Hope Todd gets his bus pass soon.
    You take care!!
    Jeanie xxx

  6. My goodness, Marie. Saw this on facebook and rushed over to see what it was about. I've never heard of it before.
    But you're right, knowing what it is is good. Hopefully they can treat it successfully and alleviate some of your pain.

    Big Hugs!

  7. Now that your pain has a name, perhaps it can be dealt with. Your positive outlook will make all the difference in that for sure. I'll be praying that treatments will help and that the pain you are suffering ends too. I agree with Angie in that the good Lord knew you needed to get off your feet working. With the move and all I know it will take time but I think the rest will do you loads of good too.

  8. My dear Marie, Im so sorry to hear about your pain. You know you are a magical and special person, you know sometimes the life give us pain and hard moments and you know a bout this. You have to think God is with you and never let you alone, I will pray MORE for you and ask God help you to feel weel.
    And think ANgie have reason God see all the thinhs and who now? Maybe you needed a new roas and Im sure He will help you.
    Huggs and love special for you and Todd, my prayers go on! besooss, gloria

  9. Hi Marie....So sorry to hear about the pain you have been enduring. I'm glad they finally figured out the problem and that they will be treating it. Take care, and I will be praying for you! By the way, I wanted to tell you how much we enjoyed your "tuna casserole recipe" that you posted in March. It was the best we have EVER had!!

  10. Marie I'm so sorry about your disease but at least now you know and can proceed with treatment. I live with pain of arthritis so I can imagine what you are going through. I wish you the best in your treatment.

  11. Oh these temporal bodies just love to put stumbling blocks in our path. I am not that familiar with Paget's but maybe your bone scan will be more definitive and you'll have more information. I have been misdiagnosed before so it can happen.

    I can surely understand how something like this can set you off emotionally. I found a lot of comfort in the scriptures when I got a scary diagnosis that turned out to be wrong after two weeks of major suffering with worry. I think the thing I learned from that experience is that there are times in our lives when we have to submit totally and completely to His Will for us. It is a process and once we are able to do it the peace will come. We think we have but the doubts and need to have control keep resurfacing.

    I eventually did have to have surgery for my misdiagnosed illness but by the time I got there 8 months later I was so calm when we arrived at the hospital Jim thought I was drugged...but he knew I wasn't. From total fear to total peace takes sometime.

    God bless you each moment, Marie! Hopefully they can get you some meds that will help and also remember...You can take the chef out of the kitchen but you cannot take the chef out of the girl.

    I made that up but I believe it. You were born to won't stop.

    And like your other friend said you can continue to teach online, be more creative in your other talents and look for work later in a different line. How about as an editor or writer? You could illustrate and write some darling children's books. And you could make a cute cuddly animal or doll to go with the book!

    I love you dear friend,you and the Queen will survive and prosper!

  12. Dear Marie,

    Bless your heart and your body. I too have long term pain that affects what I can do.

    I can tell from your pictures on your post that you know that it is Jesus Christ alone that can help you, save you, heal you, or give you strength to go on.

    "Jesus Christ is the same yesterday, today and forever." (Sorry, didn't take time to look up the Bible reference.) He spent His time healing and drawing people closer to Himself and to Our Father.

    May you draw closer and closer to Jesus Christ, the blessed one and only Son of God. May He comfort you as you walk through this.

    I had to smile that even with an announcement such as this, you still shared a scrumptious recipe.

    You're a sweetheart!

    Your friend in Christ,

  13. Dear Marie,

    I'm so sorry to hear about your illness and the pain you've been experiencing, but glad you are beginning to get some answers and I hope the treatment will go well. You'll be in our prayers as you wait to hear the outcome of the next scans, it sounds like it's a good thing they've caught it now and we will hope and pray that with medication it can be contained. You really have had a rough year, and you are holding up so well and inspiring others in the process-- but you really are due some good news now!! Thinking of you-- Love, Sarah

  14. Marie, I am so sorry to hear this. You never let on that you had any problems like this before. Do you know I have a huge lump on the top of my right foot. When I went to the doctor about it a month ago, and then had it xrayed, he told me that I have Osteo arthritis and abnormal bone growth over it. I bet I have what you have. I am in constant pain. You disease seems to be much worse than my little foot. I am going to pray for your mobility, strength, good sense, and resiliency. You just take it easy, sweetie!

  15. Oh my...that sounds sorry that you have been in such pain! And it sure can make us feel emotional...I hope and pray that you can get some help and relief! :D

  16. Marie I know this is disheartening at best but I also know that your faith is strong and He is stronger. Take care of yourself and so what they tell you. blessings, marlene

  17. Marie...

    I just read about this on your Facebook. I am soooo sorry. But it is quite interesting the way the time-line has played out, isn't it? It seems like your new move came at just the right time.

    I'll keep you in my prayers and thoughts.

    Love you:
    Gerushia's New World

  18. Hi Marie... I went to dinner with Darien and her mommy and daddy tonight, and her mommy (my niece Janelle) told me of your diagnosis. Isn't it remarkable how we bloggers can become like family members... Here we are in Fort Collins, Colorado, talking about the cruise Kris and Lura are on, and the state of your health.

    I'm devastated to hear your news. As one who lives in constant pain, of varying degree, I can't empathize with what you are going through. There are days of seeming remission, and days of total despair.

    How blessed we are to have our faith and our church to comfort us. You are certainly in my prayers always. I'm praying for medication or procedures that will help alleviate your pain, as well as strength for you to endure through the worst of it.

    Take care sweet friend.

  19. Oh Marie, I had no idea you experienced such pain. I ache to imagine it. You are in my prayers.

  20. Oh Marie, I am so sorry to hear this. I had no idea you were having so much pain. You always sound so positive and uplifting. I am praying that the scan will show that the disease has not progressed too far, and that it can be treated. And I'm also praying for the Lord to touch your body and heal it in the name of Jesus.
    P.S. Love the pictures of Jesus with the litle children.


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