Hi,

I have been quiet about this, but I was in the hospital a few weeks ago with an anaphalyctic reaction for no apparent reason. They called an ambulance for me at work when I was unable to breathe or speak. I was covered in hives, my heart was racing along at 150 and my pulse was "weak and thready." I hadn't been stung and I hadn't eaten anything I was allergic to.

I am being tested for systemic mastocytosis, which is (I believe) a rare form of (indolent or non-aggressive) leukemia. If I have all my facts straight: mast cells are white blood cells that are part of the immune system and control allergic response. There is a mutation in a cell and it begins to reproduce at enormous rates. These cells can then colonize in your liver, spleen, intestines and stomach and skin. The prognosis for a long life (but debilitated) is pretty good for about 70% of the patients, although you will continue to suffer more and more frequent episodes of anaphalytic shock. For the other 30% the leukemia (if the preliminary stage is truly leukemia) moves to an aggressive stage and there is no treatment for it.

My liver is enlarged and I have bone pain. My local doctor is fairly certain that I at least have this in my skin (cutaneous mastocytosis). He can stroke a freckle on my skin lightly and produce hives, wheezing and a systemic allergic reaction.

I see the specialist at the major hospital tomorrow morning. She is probably the leading expert in mastocytosis in the country. I am lucky to be living very near a major city with great medical resources. She was gone on vacation for the past three weeks but she fit me in on an emergency basis as soon as she got back.

If everything happens the way my local specialist thinks it will, I will be having bone, liver and skin biopsies over the next couple of weeks. They have to figure out why my liver is swollen and has been since the episode. (I don't drink and don't do drugs.)

I carry all the proper supplies--Epi pen, medic alert bracelet, nebulizer, injectable antihistimines. I have for years. My friends and the security staff at work know what to do for me, as does Mr. J. Our kids don't know what to do if this should happen to me. They don't speak enough English yet for me to explain or for them to call 911.

I am kind of in shock. I have had these reactions in the past, but I had been free of them for 3 years. We thought that they came from food allergies. I felt safe that if I didn't eat what I was allergic to that this wouldn't happen to me. I don't feel safe anymore and I am kind of angry at this (maybe) being out of my control. (I am a big control freak.) Maybe everthing will turn up negative--most medical tests are negative.

Please, if you don't mind, keep me in your prayers. I already have quite a few medical complications like rheumatoid arthritis, osteoporosis, and endocrine disorders. I really don't want another one.

MJ

<small>[ September 03, 2002, 07:16 AM: Message edited by: MaryJanes ]</small>

{{{{{{{{{{{{{{{{{{{{{{{{{MJ}}}}}}}}}}}}}}}}}}}}}}}}}

You are in my prayers! I have never heard of this type of problem, and is sounds scary! I will pray for wisdom for your doctors and healing and comfort for you and strength for your H and family! I honestly don't know what else to say that that! <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" />

Love, prayers, and hugs,

Tigger

As always, I am praying for you Dear Friend.

{{{{{{MJ}}}}}}

Take care and keep us posted.

I'm stunned! I'm a spiritual, but not too religious person. I've been known to have my "conversations" with God. I don't know if you would call my talks with God "praying". But for you, dear lady, I will most definitely pray.

OB1

MJ,
Please know that you are in my thoughts and prayers.
Please keep us posted. We care about you and hope that all goes well the next few weeks.

Tina

{{{MJ}}},

I will keep you in my thoughts and prayers. Keep us posted on your progress.

CM

mj,
I will keep you in my prayers.

Dawn

My prayers are with you, Mary Janes. You've learned to summon and activate that fighting spirit to restore your marriage. Now call upon that same spirit and strength to fight for your health,,,and we'll back you up with prayers!!

MJ, you have my prayers, as always. I hope it is not the aggressive kind, if it in fact is what you think it may be. Please keep us posted.

MJ,

You are in my prayers. Keep us posted please.

With love,

would like to add my prayers to the bunch. God bless.

What the heck is THAT? Oh Mary Janes, I don't know what to say! I'm stunned this is happening to you...perhaps you should go back to being Mrs. Job, for crying out loud.

Dear Lord, grant your servant, MJ, good health during this trying time. Whatever is frightening, please make it nothing or at least manageable. She needs her health, Lord, to raise her boys according to your commandments and teach them Your way. Help Mr. J through the pressures and stresses he is dealing with and keep him strong and close to You and a comfort to MJ. Thank You, Lord, for the blessings and the joys as well as the challenges. Protect MJ from ill health and restore her to wholeness.

In Jesus' name, Amen.

Catnip =^^=

Dear MJ,

Four years ago I was diagnosed with a very serious heart problem. I remember that day like yesterday -- the doctor looked at my test results and casually told me that most people with my illness lived for five years.

I refused to believe my doctor. Doctors know what is in the textbooks, but they don't know and cannot explain the individual spirit. I had children who needed me and I placed myself in God's hands and care and asked Him to help me.

Four years later, I am doing great and I am virtually symptom free. I still have the illness and will always have it, but it is under control and I have no reason to believe that I will not live a long and happy life.

Tonight, MJ, my prayers and thoughts are with you. I know how it feels to be faced with your own mortality and scared, not for yourself, but for the children who need you so much. Just like me, you waited a long time to be a mother and to have this illness bearing down on you at this particular time is heartbreaking.

Let my illness be an example of the real-life miracles that happen every day. You have the strength of heart and spirit to challenge your body and control whatever it is that plagues you. You have purpose in the form of two special boys who have much joy to bring their mommy for many years to come. And you have support and prayers from so many of us on MB -- those that voice it and those who pray silently for you.

May God bless you and guide you through this difficult time in your life.

love,
heavenly

Heavenly, you're like a big squishy hot water bottle and a cup of cocoa in front of a roaring fire on a cold rainy night....

You give such hope and comfort. I love your spirituality.

Catnip =^^=

You're not on the spot, God is on the spot. His Word is on the spot. His promises are on the spot. He said He will never fail you nor forsake you. Keep the faith!

MJ, I'm very sorry that you are continuing to have problems, and I hope the tests are all negative and you recover your health. My prayers are with you.

Dear Mary Janes

How are you doing today? What did the specialist say this morning?

We've all been praying for you.

Catnip =^^=

MJ,
You are in my thoughts and prayers. Will do same for your niece, as well. Please take care of yourself.
with love,
cd

MJ,

also saying prayers of healing for you.

God Bless,
Z.

MJ,
I'm stunned. You've been through SO MUCH!! <img border="0" title="" alt="[Frown]" src="images/icons/frown.gif" /> I agree with Nerly: Get your fighting spirit on ( <img border="0" title="" alt="[Smile]" src="images/icons/smile.gif" /> ), and with BTDT: God is in charge! Keep the faith!

Prayers and angel wings,
J