Mast Cell Madness…Will you love me anyway?

ImageHow many of us ask this daily in our minds when we are struggling with Mast Cell Disease and at our worst.  Ever since I wrote my last blog “Coming out of the Closet” I’ve been thinking, thinking in a clear mind.  

For three weeks I was in a total flare.  Three very long weeks.  I didn’t use the epi pen because the upper body muscle spasm was different than before and it radiated into my shoulder.  Cardiac possibly, was my thought.

 Now, think about it..I didn’t use my epi because it could have been cardiac.  How irrational is that thought? How irrational was it not to go to emerg if I thought it was cardiac?

Very irrational now, but then it made perfect sense to me.  More embarrassing is that I’m a retired nurse.  I didn’t go to emerg. because I didn’t have a plan for my little blind doxie or orders set up in emerge…we all know how important that is.  My last time there was a nightmare so I refused to go again until they had orders in their “black binder”.  My doctors insist I cannot continue to treat myself at home with epi and nebulizer.  It’s too unpredictable and I agree.  I’ve been doing it for awhile now and in my clear mind I know the risk.

So from the time I was at the TMS Conference where I used an epi and prednisone for three days in order to get home, until October 18th when I went to the doctor, I was in anaphylaxis.  Plain and simple.  Not just a flare but extended 2 system, stage 3-4 anaphylaxis,  only I just kept going.  On the 18th my C-RP (sensitive indicator of inflammation) and anaphylaxis was 70.. n<5.  I was in so much pain I was in tears, yet I kept going.

 The reason I’m writing this part is because in my last blog I said, “no one sees me when I’m sick” “No one knew”.  There was no one around to tell me my thinking was irrational and I functioned (to a point) daily with a great deal of couch time.

One week later, my C-RP is down to 15, most of the spasm has gone and I know my thinking is clear.  

There have been many conversations about the different symptoms of Mast Cell Disease but we seldom discuss the emotional side, the brain side, the unpredictable side that actually has its own diagnosis.  Mixed Organic Brain Syndrome.

It bothers me even using the diagnosis.  I worked for over 20yrs in an active Psychiatric Unit never thinking that ten years down the road I would be talking about the diagnosis in reference to myself.

Now, with a clear diagnosis of MCAD with systemic involvement when I look back, I can clearly see times where emotion was uncontrolled, It wasn’t depression, altho’ I certainly had much to deal with in the way of stressful events.

 I loved my job, the acuity and stress of the unpredictability.  It was when I became quite ill with cholelithiasis and pneumonia at the age of 50, had just bought my dream house and had decided to hire a search agency to look for my biological family.  No stress there!  That’s when I started crying at the grocery store and couldn’t get off the couch.   My face would swell up on one side, i’d be wheezing and with hives and I would carry on at work like nothing was wrong.  Again, no one knew how sick I was.  I didn’t know.  I do now.

I don’t want anyone to think illness is just an excuse for behaving badly because it’s not.  Neither is lack of education an excuse for mistreatment of those who are ill.

 What I do what to explain… that this part, this brain part is real, and so badly misunderstood by all.  By those of us who experience it and the people around us.

Not only do we have to deal with the endless symptoms of misbehaving mast cells in all areas of our body including the brain, but also the lack of understanding with our families and friends.

 Its lack of knowledge, not love that causes the problems.  Surviving with this disease is a family affair.  We can’t do it without you but we need you to understand the depth of the symptomology.

I’ll just list a few that I myself have noticed.  Ten years ago, I was a highly functioning, well respected nurse.  I don’t want to be thought of as a diagnosis but I’ll confess anyway.  I’ve had to hang up my hat, so to speak but the person inside is still the same.

Issues with cognitive functioning, changes in mood, irritability, forgetfulness, vagueness, inability to concentrate at times, strange sensations like little bugs crawling up the back of my neck into my scalp, smelling smoke or electrical fire when there isn’t any, clumsiness, feelings of doom and gloom, difficulty finding the right words, anxiety, uncontrollable tears.

 I’ll stop there even tho’ i know there’s more.  Most of the time now they are controlled unless I’m working up to a reaction.  Then I notice I get teary and quiet.  Can’t stand to be around crowds or busy activity.  It causes sensory overload.  Add into these “brain” symptoms, the long list of physical symptoms and you find a mast cell disease patient trying to get through the day, the moment.

Some folks have anger outbursts, depression, jittery feelings….the list goes on and on.  My example of going 3 weeks in a reaction because no one knew and I wasn’t thinking clearly is important in that we need to bring understanding to those around us.

Mast cell issues with the brain have been documented and studied in journals of medicine.  You are not crazy.  Many of us have spent years, decades even going to doctors looking for answers, many of them slot symptoms into various boxes of diagnosis, some even psychiatric.  How degrading and humiliating it is for us, being so physically ill to have someone discount the reality of what’s going on in our bodies.  Mast cells are responsible for so many things in our bodies and brains, never mind when you get into 23andMe and discover Methylation issues affecting dopamine and serotonin.  You/we are experiencing a reaction, not just being a a pain in the #$@

In 2003, the year I was 50, I found my biological family and my mast cells went crazy.  They pushed me over the edge into the abyss of masto hell only I didn’t know what it was.  They thought i was depressed and was avoiding them when I was in a place of such sensory, emotional overload I could barely handle a neighbour saying hello.  I couldn’t stop crying, I couldn’t get off the couch for the unrelenting and unbearable fatigue.  Every day there was a different rash.  My collagen and degenerative disease took over.  I tore my rotator cuff, my jaw went out of place, the disc slipped due to DDD, i was in never ending pain and had to wait almost two years for surgery managing on my own. No wonder I crashed and burned.  No wonder my mast cells took over.  No one understood, not even I knew what was going on.  I chalked it up to reunion stress and the normal reaction of needing to regroup.  My doctor said its CFIDS and FIBRO..you need rest..but it got worse.

No, what I really needed was a proper diagnosis and understanding and care from those that claimed to love and support me.  It took several years of continuous decline for me to be able to put the puzzle together and by then I was having anaphylaxis every week at least.

Just before I went for diagnosis in South Carolina at Hollings Cancer Clinic, my daughter told me, during an argument that when I’m really sick my mind, emotions, and heart get all crazy and I take it out on her.  At the time I didn’t see it.  I do now, except for the heart part because I’ll always love her.  I’ll put it in writing and send it out to the cyber world. You were right, you saw something that was different about me and voiced it.  You did as so many of our family members and friends do. Unfortunately it’s done without the knowledge and understanding of “why”.

What we need as mast cell disease survivors, is compassion and kindness. Understanding the physiology of the disease helps with that.  Understanding that when you see the signs of irritability, or tears that its not judgment and anger we need, its understanding and kindness in pointing out in a gentle way that perhaps we need some medication because the mast cells are acting up.Image

It’s not us, as a person.

It’s the mast cells.  It’s the disease.

Perhaps there are small ways your kids can be involved in pointing out you are more irritable today…without judgement..with a desire to help not hinder.  Stickers or magnets on the fridge perhaps as a way of communicating without confrontation.  Smiley faces or angry faces, whatever works.  Might even work for spouses and other family.  It’s a difficult subject to bring up especially when the person isn’t themselves at the  time.

For friends and family, spouses involved with caring for someone with mast cell disease.  Educate yourselves as much as possible.  We didn’t ask to be sick.  We can’t help it, nor can we completely control everything about our bodies at will.  We strive to, but perhaps we just aren’t there yet.  A kind word, a phone call, a visit means more than you know.

Isolation is one of the most difficult parts of mast cell disease or any invisible disease.  In order to control the mast cells we need to have a very controlled environment, with food, with smells, with stress, with activity.  

Everything about life changes.  It’s a grieving process for everyone involved, since life will not be what you had planned it to be.

 Be gentle with each other.

 Be kind with your words.

 Be there with your actions expressing your love and understanding.

 Be patient with us.

 Don’t forget that inside there is the same person you knew and loved before,

only now we are having to deal daily with more than most people could handle in a lifetime.Image

18 thoughts on “Mast Cell Madness…Will you love me anyway?

  1. Prayers for everyone. Please, encourage people with mastocytosis to be kind to others who are suffering, too. Thanks. I am thankful for all kindness from all people but sometimes, we humans are cruel to those who are different or say something different than us. A different view doesn’t always mean someone is arguing, attacking, competing or trying to be negative or rude in any way. Sometimes, it’s someone trying to share to build friendships. Blessings. We all need one another in this journey of life. 🙂

  2. How did you ever get a diagnosis? I am just bouncing around from one specialist to another, wiht “idiopathic” symptoms and “diagnosis.” Meanwhile, a trip to the ER puts me in a tailspin for weeks. and I can’t explain why. I actually live in Chas, SC. Is this a form of cancer?

      • I cannot find any FB groups. Could you recommend one? Is it Dr Afrin that you are referring to? Thank you for your help! Just today I am so swollen from attending a conference with my daughter that I can’t even eat or open my eyes well. and thats even though we sat on the outskirts of the conference and were careful.

      • Hi, I’m sorry you are going through such a rough patch. Yes, Dr.Afrin was who I saw, he was amazing. There are many groups out there for support. http://www.tmsforacure.org is a great place for info. http://www.mastcellaware.com has good info.
        FB groups….The Mastocytosis Society and Mastocytosis and Mast Cell Disorders-Integrative and Holistic Approach are a wonderful wealth of support and information. A great informative blog is meandmymastcells.com There are also yahoo groups but these should get you going. Wonderful people in all of the groups. Just ask to join and get started. You don’t have to do this alone.

  3. I love reading your posts, its so nice to be able to hear from someone who knows exactly what your going thru. I just landed in the hospital and trying to explain to the EMT’s and the neighbor what was going on when I couldn’t breath and do not have a significant other to explain my multiple symptoms. I was extremly lucky that my neighbor was coming home from work and heard me choking. Long story short they were going to have to intubate me because my throat was in full spasm and closed my throat down. Being single I would love to have some one around just to be able to understand. My friends don’t get it so I don’t even try to explain any more. My Mom died from this disease so I know where it can lead so it’s hard not to be depressed

    • I’m so sorry Joan.
      It’s difficult living alone and trying to manage this disease. Do you have an emergency pkg put together for the EMT’s with your information, list of meds, TMS protocol? This has helped me get information across to the ER quicker.
      I hope today is a better one.

  4. I saw myself in several paragraphs here….The crawly skin, the smelling of smoke or electrical burning….and especially the crying for no reason….Thanks for sharing all of this with us..

  5. Claire, Thank you so much for allowing me to share your mastocytosis experience! I don’t think anyone understands really what we go through with this very misunderstood,life altering, and deadly disease. Our health is so fragile daily, that its hard for us to even understand at times. We constantly have to watch out for triggers and for many of us, just the people in our life pose deadly triggers for us. If it were not for understanding masto friends like you, I don’t think I could make it daily without having a support system nearby. I have had to fight to get to medical care, fight for understanding and acceptance, and fight to stay alive daily….as all of us with mastocytosis do. Its not a well known or heard of disease, therefore “we are not sick”….so tired of the discrimination and prejudice that comes along with mastocytosis, and its so serious being a myleoproliferoative neoplasm for some of us, and mcas so life threatening too.Just having it is exhausting, then NOT having supportive people in our lives just progresses our disease further. Thank you for being so honest and open and speaking up. We need advocates so bad since our energy is so limited but you speaking up to help spread awareness puts us that much closer to a cure! Thank you!

  6. I love this. Thanks for putting this ohhh so touchy but prevalent symptom down in words. It is so hard to ask for what we need. I think I will print this and hang it on my refrigerator.

  7. This reminds me of the letter I sent to my friend trying to explain the reason I seemed to be acting “crazy”. I want to share it in case others feel like they are in the same situation. ” I am not going to sit here and say that I never said or acted crazy. My whole situation was out of control. I was in fight or flight mode most of the time for many months. This happens when you go into anaphylaxis; there is a feeling of impending doom. If you google that, you will find that is actually a symptom of it. Anaphylaxis is not just swelling of the throat there is a lot taking place in the body. Heart rate and BP spike, because the blood vessels start dilating and once they dilate so far the heart rate and Bp plummet. There is also lots of diarrhea and vomiting(thankfully I don’t vomit). All this mixed with the high doses of antihistamines I was probably all over the place. I have talked with my specialist about how this has affected my friendships and he wanted me to tell you that mast cell affect brain function but he didn’t understand why my friends were questioning the diagnosis when there is medical proof. He said cognitive function and behavior can be affected. But this does not make me crazy, bi polar or Munchasum as both you and Blank have suggested. It just means I was sick and needed the proper treatment.” This has been one of the hardest parts of this disease, yes reading every ingredient is hard, being on a strict diet is hard, going to the ER is hard, feeling overwhelmed is hard, but having people you care for judge you is extremely hard.

      • A Friend of a Sufferer: at beautiful new friend is suffering with mast cell. It has been a horrible and painful process to watch. I stay for I see this is real and I hold her sobbing in confusion. She is a stunningly beautiful 36 year old young mother I plead for prayer for her. It is terribly painful and absolutely confusing. But I know her, so for her I fight! I challenge the rest to remember who they are not being attacked by these overeactive cells. Theses are beautiful people being ravaged by something beyond our imagination! Do not give up…FIGHT THE GOOD FIGHT. I Love you all suffers, especially Kymmen in Tustin, CA.

      • Lisa,
        She is so blessed to have you as a friend. This disease is cruel beyond words. It takes your life and twists it into something completely unreconizable. In saying that, on the flip side…I’ve met some of the most wonderful people that have become such dear friends. There is hope. There is community and caring as you just proved. Thank you for caring and stopping in❤️

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