Bodily functions…it’s not fair

How interesting are our bodies? I mean, seriously… all these organs and systems performing bodily functions without us ever having to put much thought into it at all. Other than knowing we need to  eat, drink, use the bathroom, exercise, brush our teeth and such, we can pretty much live our day-to-day lives without worrying about our body parts functioning they way they are supposed to. Pretty easy to take this sort of thing for granted. That is, until you realize your body isn’t functioning correctly anymore.

I have two rare disorders. Well, I don’t think they are so much “rare”  as “rarely diagnosed”. I spent my entire life with symptoms no specialist could explain. After having a rheumatologist coldly ask me, “why are you here?” and telling me, “You’re looking for a unifying diagnosis for all of your symptoms and you aren’t going to find one”…and having another doctor tell me that I should consider going on an antidepressant, I just stopped complaining. I knew whatever I had wouldn’t kill me, as I’ve made it this far. So, I stopped reporting any symptoms at my visits and resigned myself to a life of chronic pain, allergic reactions, worsening eyesight, severe digestive issues, pre-glaucoma, two heart arrhythmias, insomnia, frequent joint dislocations, chemical sensitivities, dizziness, shortness of breath, light-headedness, weakness, fatigue, dental problems, metabolic syndrome…I’m sure I could elaborate more, but I’m sure you get the picture. The thing is, even though I resigned myself, in my early 40’s,  to living this life, I just KNEW there was a diagnosis somewhere. It’s just not normal for someone that young to have so many medical problems that are not explained.

So, I researched. And I researched. And I researched. It seemed hopeless, but there was nothing else to do, so I kept plugging away, losing hope day by day. Until one day…

I came across an article written by a doctor describing my EXACT journey! I cried reading it. He was describing me. I wrote to him, telling him just that, along with describing my symptoms and years of being told there was nothing wrong with me. This amazing man actually wrote back to me, stating it did indeed sound like I had Mast Cell Activation Syndrome. I took his letter, along with some other research I’d found and brought it as a presentation to my allergist, who then referred me to the Mast Cell Clinic at Brigham and Women’s hospital in Boston, where I finally received the diagnosis and am on a medication regime which has greatly improved my quality of life.

However, not all my symptoms were due to this new diagnosis. Mast Cells have nothing to do with dislocated joints, severe pain and a few other weird things about me.. So, I did a little more research. OK…I did a LOT more research.  I kept going until I found another article, describing a disorder that is commonly diagnosed with Mast Cell Activation Syndrome…Ehler’s-Danlos Syndrome. It’s a connective tissue disorder which results in faulty collagen. I took myself to a geneticist in Boston who upon meeting me stated, “You obviously have some type of connective tissue disorder”. I laughed. “Obviously! Let’s tell that to the 25 doctors I’ve seen before you who told me I was crazy!” I tell ya, even though there is no cure for these two disorders, the validation of a diagnosis is kind of healing in itself.

Unfortunately, my two sons were just diagnosed with connective tissue disorders a few weeks ago. And even more unfortunately, theirs looks to be affecting their vascular system, putting them at risk for ruptured aneurysms. We are still in the diagnosing stage, in regards to determining which type they have. It’s one thing for me to have this crap, but for my boys…that’s a whole other story. It’s not fair. I’m scared. I hate that I gave this to them. I hate that they had to have echo cardiograms last week and will have to have them frequently for the rest of their lives. I hated watching my oldest son’s face as the cardiologist described his enlarged aortic root. I hated watching my youngest son’s face as the geneticist pointed out the physical characteristics of Marfans’s Syndrome…of which he has many. I hated listening to my son nervously whispering, “I hope I don’t have to have surgery on my heart”.  I hate taking my kids to the chiropractor every few weeks to push in a dislocated joint.  I hate that my son had to quit playing high school basketball because his shoulder won’t stay in place and his body won’t function the way he wants it to. I hate him being in pain…much more than I hate myself being in pain.  I’d take all of his pain and add it to mine in  a heartbeat to keep him safe. That’s how moms roll…

Wow, that was sort of a venting session there. Sorry. I don’t hate much in this world, but watching my children suffer…yeah, I do hate that. However…

…life goes on….

 

 

The Friday Reminder and Prompt for #SoCS August 11/18

 

 

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15 thoughts on “Bodily functions…it’s not fair”

  1. Thank you so much for sharing. Vent away, my dear. It sounds like you have been on a long journey believing in your gut instinct and not giving up until you discovered what you have. Perhaps all this journey was to prepare you with the knowledge many parents may not have, as you do to help your children. Bless you xx

    1. Hi, and thank you so much for the great response! Sorry for the delay in my reply, I haven’t had much time to get on here lately. I’ve been focusing on being mindful and enjoying every minute of this crazy journey, and things have settled down and the stress level is low, thank God. Thanks again…:)

  2. The fact that you did all that research speaks volumes about your determination and courage. If you had not done that research, it would probably have taken longer to figure out about your sons’ conditions. You are amazing and a good mom.

    1. Hi JoAnna. Sorry for the delay in my reply. Life has been getting away from me lately. My ex husband used to call me “tenacious”..and not in a good way, ha ha…but it came in handy here, didn’t it? Thank you, again, for being my cheerleader…xo

  3. Oh my goodness – I want to send you the most enormous hugs and make it all better. But well done, well done for persevering and getting to the bottom of it all. I can do nothing but send you love and having children myself I can totally understand your wanting to take away any of their pain and health issues. I totally understand. Katie xx

    1. Hi Katie, thank you so much for all of your love and hugs! I love them! Sorry for the delay in my reply…things have been busy around here. Things have sort of settled into a new normal for now, and we are kind of enjoying plain ol life, which is nice. Life does go on…whether it’s how you want it to or not, so I have adapted. Thanks again…xo

  4. Not venting at all, though hopefully sharing lightened the load somewhat. So much to deal with, understand, and face. I admire you for the research, persistence, and courage. And it is not fair. I am sorry that this has occurred for you and your boys. You are right on it though. Such strength!

    1. Hi Patricia, sorry for the delay in my reply. I haven’t had much time to get on my computer lately, as you can imagine. Thanks so much for responding. It’s been tough, but things are settling for now, and we have been able to get back to life as normal for awhile..until the next “thing” pops up. Day by day….:)

  5. I’m so sorry about all your pain, but glad you’ve found some diagnoses and medicine that’s helping. And as a mom, I’m sorry about your sons. I totally feel your pain there, especially as my son is currently doing medication trials for anxiety meds (on our second med right now as the first one had intolerable side effects). We’re still waiting to see if this one will help him.

    Hugs!

    1. Hello friend…sorry for the delay in my reply. I’ve been busy, as I’m sure you have, too. I know you completely understand what I’m going through, in regards to the kids. God, it’s not easy, sometimes. I just keep holding on to my faith that God has a plan and I need to trust in it and in Him and in this entire process. I’ll just end up driving myself crazy if I don’t…

      1. I don’t know what you know or believe about things like pre-birth planning, but in one of my hypnosis sessions, when the practitioner was regressing me to the initiation of an uncomfortable feeling (that I constantly medicated with food), with the goal of healing it, I very unexpected regressed so far back that I saw some of the planning my soul did before this current lifetime. It was wild! And the #1 piece of wisdom that came it was discovering that I’d planned certain hardships in my life to experience them and to learn from them. We all do this.

        As a mom, it sucks beyond all measure to see my son suffer, but I remind myself that his soul actually chose to experience anxiety. Because of it, I have learned so much about anxiety specifically, and instead of my son growing up feeling like a victim to it, I’m teaching my son how to live with it. I tried to help him heal it, but at this point, medication is the route he’s going. And there is finally some progress there. It’s still early on, so I’m expecting more progress. When he’s older and I’ve had hypnosis training, I hope to work with him and help him heal as much of the anxiety as his soul will allow.

        I said all that to say that yes, it absolutely sucks to see your boys have to live with these conditions, but because of your persistence, they won’t have to go through what you went through, going to doctor after doctor, trying to figure out what’s going on. Their souls picked you as their mom because yes, it would set them up to inherit your DNA. But also because of the potential you had to grow up and have the medical background you have, in order to research the hell out of what’s going on and figure it out. Knowledge is power, and you’re giving it to them.

  6. Thanks for keeping it real and this is not venting. Knowledge is power and you are now in a better place as a result of your research. As for the boys, we parents can protect our kids only so much in this broken world and we can give them our love but we cannot prevent bad things from happening. But again, knowledge is power and help can be found with that knowledge! Keep flying butterfly!

    1. Sorry for the late reply…but thank you so much for your thoughtful response! You’re right…this is a broken world, but I have learned to find strength in the broken places, and hopefully have passed that along to my kids:)

  7. That is a tremendous story and I’m happy that your life is better for it. It’s amazing that the same scenario, of a chance reading of an article leads to the solution to a lifelong problem, happens almost every day. No matter how intelligent doctors are, they can’t know every symptom of every possible condition they encounter.

    Listen, I didn’t get the sense that you were venting, and even if you were I wouldn’t blame you. My thoughts and prayers are with you and your family.

    1. Hi John,
      Sorry for the delay in my reply. Life is flying by too quickly for me, lately. Thank you for your feedback. It definitely is a tremendous story, and I have no idea how it will end. And sincere gratitude for your thoughts and prayers… I will take all I can get:)

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