Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> Where do I go from here? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1320637530 Message started by lynda51 on 11/06/11 at 15:45:30

Title: Where do I go from here? Post by lynda51 on 11/06/11 at 15:45:30 Wow....this is TOUGHER than having breast cancer!!!!!!   Just this week, I had a reaction to compounded claritin, got bronchitis, a mild case of pheumonia with acute exacerbation of asthma (first time ever).  On Friday I ate a little bit of food (that stuff you are supposed to be able to put in your mouth!!) hummmm  and got itchy all over, dizzy, diarrhea and started coughing.  Sat eve. I was so hungry i ate again (ONLY what I CAN normally eat)...my husband had to call 911. Yea....  the WONDERFUL ER we all love!!!!   They even sent an intercept ambulance from the hospital ??? (don't even remember transferring, have no idea why)....inhaled albuterol on the way, masssive doses of steroids, and Ativan in ER. 5 hours later I was discharged with steroids and Ativan to go.   Now I am getting itchy from my Pepcid. My local doc is still NOT on board and Dr. Afrin is way toooooooo far away.  Just frustrated, starving and need a hug! Thanks for listening! Lynda

Title: Re: Where do I go from here? Post by kimtg68 on 11/07/11 at 02:35:12 Oh Lynda! I am so sorry you are going through this. I wish there was a magical solution I could share to make it all go away. I'm praying for you! Kim

Title: Re: Where do I go from here? Post by Enko on 11/07/11 at 07:40:33 Hang on Lynda! I hope that everything will calm down soon! :(

Title: Re: Where do I go from here? Post by lynda51 on 11/07/11 at 08:19:43 Thank you Kim and Enco....I am taking my steroids and doing a bit better today.  I have my primary on board and she is making some calls today for me and said she will stay on it until we get some answers! I have only been seeing her about a year but she is great! I appreciate your support and prayers!  I hope you both are having a good day! Hugs, Lynda

Title: Re: Where do I go from here? Post by lynda51 on 11/07/11 at 08:22:29 Sorry Enko...I spelled your name wrong.  (I hate that when people do that to me) :-/  I promise I will get it right next time :)

Title: Re: Where do I go from here? Post by Enko on 11/07/11 at 10:55:38 No need to apologize :) I'm glad that you're better! Can you eat today?

Title: Re: Where do I go from here? Post by hb36 on 11/07/11 at 13:59:59 Lynda, just sending some encouuragement your way!!  Have you seen your oncologist yet?  I know you really like him but if he is not on board with the mast cell issues maybe you need to call around to find another local doc to work with dr afrin.  Actually, it sounds like maybe your primary might be able to fill that role for you.  Keep us posted. Heather

Title: Re: Where do I go from here? Post by Joan on 11/07/11 at 16:14:21 Hi Lynda,   Glad you're doing better today.  Hope that trend continues!   When our digestive tracts are so irritated, any food we put into our stomachs can trigger us.  That doesn't mean you're reacting to that food, because your stomach might react to anything in it.   Best to let it rest and drink Pedialyte or another electrolyte solution for a day or two until the prednisone takes down the inflammation.   Doctors can also prescribe an "elemental" diet.  I think that's what it's called.  It's a liquid that is very easy to digest and provides all the nutrients you need.  Maybe that wouldn't irritate your mast cells.   I hope your primary is able to consult with Dr. Afrin and find out how to treat you at this point.  If you have an expert in your corner, you have a great chance of figuring out a regimen of meds and a diet that will work for you.  I can't remember whether or not you've seen a gi doc....

Title: Re: Where do I go from here? Post by DeborahW, Founder on 11/08/11 at 01:02:24 Hello. I am sorry that I didn't have time to sit down and write you a response yesterday. However, I wanted to share some tips with you. When I was first ill and undiagnosed (had never even heard of a mast cell), I was just like you in that I couldn't eat or drink anything. Even a bite of food would send me into  anaphylaxis -- masto style anaphylaxis, that is -- with the diarrhea, stomach pain, body tremors, nausea, passing out, etc. While no one could figure out what was wrong with me, I quickly realized that ingesting anything was partially causing it. So, I stopped eating out of necessity. I was so ill that I was bedridden (when you don't eat, you eventually lose your energy) plus my body was battling inside from what I could tell. The most I could do was to sip gatorade, water, and the tiniest bits of chicken soup broth. I seriously couldn't have more than one sip every 10 minutes or I would just start all the symptoms. It took 4 weeks for my body to calm down and I began to recover. I figure that it just needed that long for it to heal itself. Very slowly (still bedridden) I was able to eat a little more soup at a time and even add a little white minute rice. Then part of a piece of toast. As I began getting better, I started a journal/food diary on my computer so that I could track and identify what my safe foods were. Every day I recorded various pieces of info, such as the date, my weight (this was a concern because I couldn't stop dropping 2 or 3 lbs every day), what I ate and drank and how I felt after ingesting that. I tracked this for a couple months, but was quickly able to identify my safe foods (and I wasn't very adventurous -- I only ate maybe 5 foods or so). I didn't care if the foods were boring, though, because when you get that sick from food, the allure of eating completely disappears. I simply forced myself to eat tiny bits throughout the day as a means of giving myself some energy. Obviously, it wasn't only food that was causing my problem, but I didn't know that. I did know that I was so fatigued all the time, that I didn't want to do anything. So, I pretty much just rested at home and would occasionally go out to a movie with my husband -- as long as I could sit and rest, it was better than trying to do anything. Even walking from the parking lot to the grocery exhausted me and made me feel ill. So, I pretty much changed my lifestyle to include resting all the time. I didn't realize it, but this was exactly the right thing to do because it allowed me to avoid all triggers as much as possible and let my body heal. As I got better, I was able to start adding a bit more food and activity to my lifestyle. Somehow I just knew what was making me feel better, so I completely overhauled my lifestyle (career change as well) and started getting better. I was able to start living my life again, although I was always fighting my mysterious symptoms. I got better and better, though, and was happy enough for the next 10 years. Eventually, I got annoyed with not feeling good all the time, though, and pushed for more answers. That is when I discovered Mast cell diseases, found Dr. Akin, got the right meds and then quickly got much better. So, you see, you are not a freak of nature in your inability to eat! LOL. Perhaps you could try keeping a very detailed journal and in the meantime, just rest and be very patient. Eventually your body should calm down. If you are already on prednisone, then that should help. Just give it some time and get some good movies and books to relax with while you wait. I guarantee that you won't have to wait the 10 years that I did to get really better!  ;)

Title: Re: Where do I go from here? Post by iamnotalone on 11/08/11 at 04:20:10 Lynda; This is Not tougher than having breast cancer. I have a very dear friend who HAS breast cancer. She had a double mastectomy this summer; went thru hell with an expander (think of a small plastic car bumper) in her chest,because she wanted to at least look normal; and found out yesterday IT's back. She has 3 children, and one of the biggest hearts of anyone Ive ever known. I would go thru This disease without a word if I knew God would save her. Dont mean to crab at you, but the choice of words stung. I Know we are all dealing with our symptoms, but there is always someone worse off. Praying and Hoping... lori

Title: Re: Where do I go from here? Post by DeborahW, Founder on 11/08/11 at 04:32:19 I am pretty sure that Lynda had Breast Cancer, thus the reason for her comparison.... It would probably be best to contact me personally anytime a post seems to have overstepped a boundary. Sometimes, as in this case, there is a far deeper meaning than might be seen at first glance.

Title: Re: Where do I go from here? Post by lynda51 on 11/08/11 at 11:21:32 Dear Iamnotalone, I am so very sorry for the comment I made about breast cancer.  I am even more sorry that your friend is so ill.  Deb is correct.  I was comparing it to MY having had breast cancer.  I do understand how EXTREMELY difficult it is.  Last year when all my mast cell issues changed my life, my oncologist had me back on a 3 month rotation and he was the one that ordered every test he could think of to see if there was a tumor that wasn't showing up "yet".  I know how it feels every time I go for a check up to walk onto that oncology floor and feel the panic. I have been cancer free for 7 years.  I had a mastectomy, reconstruction and 8 rounds of what they called dose dense chemo.  I was was rushed to the ER 3 times and hospitalized 2 times just from the treatments.  I went  in on day 2 and 3 for an IV regiment for nausea with the (A/C) treatments and then day 2 and 3 for saline to get as much of the Taxol out of my system as possible for the next 4 rounds. Somewhere in the middle I came down with shingles.  They kept me so drugged I somehow lost a year and a half of my life.  I had to give up my job teaching second graders and change my lifestyle from one of a "care giver" to one that needed to learn to accept help.  I am not writing all of this to complain, but because I need to tell you. As Deb said, "the meaning is sooo very deep".  I do understand and I do care that your friend is suffering.  Every time another woman is diagnosed it truly does break our hearts.  Sadly, it is a sisterhood that never seems to end. I should have explained myself better and will do so when I post from now on.   I think I should have worded my post like this: the hardest thing with masto is that THERE IS NO SUPPORT SYSTEM IN PLACE.  When they say the word "cancer" you have a TEAM that walks you through your options and then you make the decisions that are the best for you.  With Masto, YOU become the doctor and after awhile you are too tired to care. I also want you to tell your friend that a close friend of mine who attends survivor meetings with me has metastatic cancer.  She was diagnosed right after me with stage 4 breast cancer. That was 6 years ago!  There are an amazing number of new medications that WILL help her!  I pray she will have those same years with her children and before that six years is up, they will have a cure!!!  I am so sorry for the pain I have caused you.  I would have felt the same way you did when I read what I had posted. I am glad that you wrote and told me how you interpreted it.   I have learned a valuable lesson.   Thank you for your understanding.   Lynda Deb, I want to respond to your comments.  They were both a tremendous help to me.  I will do so when I am a bit less emotional but I want to thank you so much.

Title: Re: Where do I go from here? Post by Kate: on 11/08/11 at 11:39:41 Luv ya Lynda!  HUGS!!!

Title: Re: Where do I go from here? Post by DeborahW, Founder on 11/08/11 at 11:59:09 Off masto topic for a sec -- my sister-in-law was diagnosed last year with Triple Negative Breast Cancer. I am under the impression that is the worst type you can get because it doesn't respond to hormones. Basically, you go straight into chemo before surgery. Then surgery and then radiation. I am happy to say that she is now fine! So, you see, there is always hope, Lori. Hopefully your friend will have as happy an outcome as my SIL!

Title: Re: Where do I go from here? Post by Joan on 11/08/11 at 17:37:01 Hi Lynda,   It IS frustrating when our bodies are out of control and unstable, but don't give up hope!  I was undiagnosed for 16 years and, like Deb, had to figure out a lot by myself.  You will figure some things out and your doctor or Dr. Afrin will help you figure out the rest.  You WILL feel better and have more energy.  It's not a quick process, but things do get better.

Title: Re: Where do I go from here? Post by kimtg68 on 11/09/11 at 03:00:26 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

Title: Re: Where do I go from here? Post by iamnotalone on 11/09/11 at 11:21:50 Lynda; Now it is MY turn to learn to think before speaking :-[. I am TRULY sorry for my knee jerk reaction. :'(   I am also sorry about all you've been thru/going thru!  :( Thank you for taking the higher road and giving me hope and encouragement (you too Deb) for my dearest friend.  You have a point about the support "teams" for breast cancer patients. WE here, are the the closest thing we have to that for masto sufferers. I will stick to being a part of This support team, and try to keep my foot out've my mouth from now on. Lord, keep your arm around my shoulders, and your hand over my mouth, lori

Title: Re: Where do I go from here? Post by Lisa on 11/09/11 at 23:30:03 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.... :o.    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!

Title: Re: Where do I go from here? Post by Joan on 11/10/11 at 14:03:25 Lisa,   Did you have gadolinium for the MRI?  If so, did you pre-medicate and how did you do with it, if you don't mind my asking.  I quit doing MRIs, even though I'm at high risk, because I was worried about the gadolinium.

Title: Re: Where do I go from here? Post by Lisa on 11/10/11 at 22:11:17 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

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