Hang in there Lynda! I'm right there with you with all this frustration. I had such high hopes when I went to see our doc down south thinking HE was going to take care of all this misery. But as we both know now it didn't work that way and I'm back to being frustrated 1) because I'm not nearly on the right mix of meds and I'm so confused about what to do and whats the max and so many more questions and brain fog just keeps tripping me up  and  2) no luck locally in getting help with all this. SIGH!

However, when I wasn't having such an emotional day one day, I realized something....I'm much further along today then I was a month ago (when I got my diagnosis), two months ago (when I traveled to see Dr. Afrin), six months ago (when I finally swallowed my fears and emailed Dr Afrin for the first time), a year ago (when I started doing more in depth research on mast cell disorders), two years ago (when potty issues became debilitating), four years ago (when a pulmonologist couldn't figure out why I was short of breath so often). So you see the progression. You are making progress even though it's slow. But I bet if you look at it like I just laid it out, you will see you are moving forward and your no longer wondering what the heck is wrong with you. Keep pushing forward sweetie! We are all here for you!
BIG GROUP HUG!!!!!
Kim

Lori,  I am very proud of you!  That took a mature woman to give such a lovely appology as that!!    Please don´t feel bad.   We ALL do this and who amongst us hasn´t?   Who amongst us can cast that stone?   I think we´ll not have anybody answering those two questions of mine!!!

Your reaction, Lori, wasn´t merely due to your friend´s situation but to your own fears of your own future.  We ALL have been rocked to the core with getting this disease.  It is a disease which totally messes with out minds and our emotions due to the unpredictability of its nature.  We never know what is going to set us off next and when it does, how it´s going to act!!  And for those of us who go through constant anaphylaxis, it´s even more difficult to find out balance!!!   This disease is TREATUROUS and leaves us all right on the very emotional edge of life.   So, you may not realize this, but your own fears for your own life have a play in your reaction, even though you may not be aware of this.  

What do we do, emotionally, when we are faced with such life threatening issues?   How do we handle them?   I´m not talking religion nor philosophically, I´m speaking on a practical/emotional basis?    Yes, many of us have our religious beliefs, but I´m not talking about this right now.  

I, myself faced this very situation 2 years ago when I realized my angiologist couldn´t judge my aortic aneurysm.  An aortic aneurysm is not something you can just pretend isn´t there.   It MUST be operated on at the right time before the baloon literally POPS!   It´s a dangerous surgery and you are left in a kind of limbo by the doctors in a watch and wait situation.  They are who decide when to operate and if they wait too long.... .    And it´s your life you must trust in their hands!   When I realized that she just couldn´t make the call and that I had been hiding my head in the sand, I ran after authorities who could try to judge it for me.  It´s an unprecidented surgical situation of a masto patient with an aortic aneurysm and there was NOTHING in the literature to help my doctor except one study on MICE.  But what I did was find a link to a study on hereditary aortic aneurysms and I asked the doctor responsible for this study if he could help me find help.  I already knew that masto authorities couldn´t make that call for me - I needed hereditary aortic aneurysm authorities instead.   So I ran to DOCTORS for nobody else could help me.   This doctor took me under his wings and evaluated my case and indicated me for surgery and if he could have operated on me I´d have been in surgery within 2 months, but instead I had to face the process of finding surgeons here in Brazil who would take me, and after a few rejections I finally found one and was sucessfully put into surgery almost an entire year after I was indicated for surgery!!   My aorta could have blown with any one of my anaphylactic crises!!!   And with each doctor refusal, my emotions were tossed up into the air knowing that I had but 6 doctors to run to for help!   And when the surgeons who were willing to take me had to do a catheterization on me, due to my prior reaction to contrast, they openly told me, We won´t operate you if you react to the contrast!"   I knew I was totally up against the wall for if they refused me, at the largest cardiological hospital in Latin America, then the chances of not finding a single surgeon in Brazil to operate was likely and it was the signature on my death certificate then!

What did I do?  How did I react?  Do I allow my emotions in all this long year to undermine me?    HECK NO!!!!!!

WE ARE NOT CHILDREN!   We are MATURE MEN AND WOMEN WHO MUST FIGHT FOR OUR LIVES!   PERIOD!!       Yes, we face incredible battles and some of us just might not make it!   Some of us face these battles on an almost weekly basis with our high rates of anaphylaxis, but how can we, as adults allow our emotions and fears to take us captive and destroy our self confidence and our abilities to decide for our lives?  How can we allow this illness or ANY illness destroy our maturity when we need it most???!!    

I don´t know about any of you but I REFUSE TO ALLOW IT!!   I may feel rotten to the core and I may not be able to function well, but I have my dignity and my ability to make my own emotional decisions as to how I am going to behave and face these challenges and although I may not be able to control my body, I am still in control of my mind and emotions and I will remain so for as long as I possibly can!!   THIS I CAN CONTROL!!!


So, I FACED the surgeon and explained to him the difference between the use of contrast versus surgery and why I was NOT going to react while on the table with surgery even though I might react to the contrast.   My explanation saved the day and he felt my confidence and convictions and decided right there in my hospital room that yes, we could do this surgery and my convictions gave to him the confidence to save my life!!!   My emotional control and my mental determination to FIGHT FOR MY LIFE gave to him the ability to do HIS JOB and take me into surgery!!    

Am I this emotional giant that nobody can relate to?   HECK NO!!!   I was up half the night crying out to God afraid that the doctors were not going to operate and wondering about my 3 children and my husband and what little life I´d have left if we didn´t have surgery!!   I WAS SCARED MORE THAN I´D EVER BEEN BEFORE!!!    But there was absolutely NO WAY I was going to allow it to take my dignity from me and rob me of my RIGHT to FIGHT for my life!!!    If I´d do this for my kids, why would I not do it for myself?!


So, where does this leave us with this cancer issue?  

There may be some of you who do not know this but I´ve heard from one of the TMS conference transcripts that one of the researchers, Dr. Theoharides I believe, suspects that masto women may have a higher rate of breast cancer.   Mast cells have been found involved in breast cancer and they don´t know if the cells have been taken captive and forced to work towards the cancer´s purpose or whether the mast cell is the bad guy helping the cancer do it´s job.     REGARDLESS, of what it is, I for one am NOT going to stand by and just WAIT!!

I have breast cancer in my family with my grandmother having died from hers and my sister having lost one breast.   So, I decided to FACE MY FEARS and take the bull by the horn.    I just did an MRI of my breasts, sonogram and mamogram and now I am taking these exams to my oncologist in December.   I am in the process of drawing a baseline of my breasts so that we can keep a closer eye upon them so that IF anything shows up, THEN my doctors will be able to see right from the bat what is going on and so then we can RUN AFTER IT!!  

Although iI´m still afraid, I am who is in control and not impotently WAITING for something to go wrong.   If it does go wrong, I´M READY FOR IT!!!

THIS, my friends is how we emotionally face our fears on a practical basis.   The fears then diminish to a more reasonable size and we can DEAL WITH THEM on a more daily basis.


I hope this helps!

Yes, I did premedicate for the MRI.   Thankfully I did NOT react!!  I have a history of severe reactions to contrasts.   I did have some flushing and I´m certain that it was the machine which does this and not the contrast.

I understand your not wanting to go through the exam, Joan.   However, it´s one of those things that you must choose between what is at stake and what presents the higher risk to your health.  

As to the gladiolum, radiologists and urologists as well as other doctors are now telling patients to medicate before and after the exam with
N-acetylcisteine, or NAC.  This is an expectorante, however it is also a substance which our kidneys need to function properly and by medicating with this you can protect your kidneys.    If you google this medication with the words kidneys and gladiolum you will find the research on this.  

I can also testify that NAC helps to protect my kidneys!!  


Lisa