Part 3: How'd I End Up In Boot Camp?!

Artista
  • By Artista · August 8, 2012 at 11:59 am · 9 replies
  • In Understanding microvascular disease
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Part 3: How'd I End Up In Boot Camp?!

"Oorah!" You can make it through Boot Camp. We are more than what afflicts us!

(Part 3 of 3)

A tornado picked you up of your short lived honeymoon. A whirlwind of information and elation of finding the right doctor or at least a path to one, lifted you up and over that high wall- just high enough that you felt the fall into the dirt. Face down. Aching from the forced exertion beyond your normal limits and here you are. You made it over the wall to see there are likely more to come. Welcome to MVD Boot Camp.

What is Boot Camp for? Learning to survive in many situations! It is for learning various useful skills. This is how I often tell others to view your first months or even first year of living with this dysfunction. It is not a disease where we have all the answers or many years of protocol set up to help manage this daily. Many of us vary a bit in presentation and what will work for us. This means to survive Boot Camp and move into best management, you MUST be an active participant in what is best for you. You must also be open to the fact, not much is black and white about this. New symptoms may arise. Your body may react one way and then shift again. You may have good days and whole spans of time that are symptom free (or almost) or you may have to face this will be poking at you every day. You will learn to roll with whatever arises and promptly use what you know to work or get help.

Just when you think you may have a grasp of one obstacle? It will be 5AM and the horn blaring in your ears! Up and "at 'em." Be sure there is likely more to tackle, but you will get better at it. I suppose like any differences physically in Boot Camp soldiers, some find it easier than others. One thing is for sure, this is an individual struggle. You are in it with others, fighting for the same cause as any chronic disease- quality of life. We find a lot of comfort in our fellow soldiers and offer one another a hand up when we can. At least the walls are struggled over with some brave company.

In any Boot Camp you will face some hard truths. You will find things that work and do not. If you thought you really knew yourself? Welcome to a deeper awareness that is only gained from being in the dirt. It is simply the beginning of being alert to the way you do things. Your view will be heightened. There will be lots of trial and error. Although opening our vessels and nitrates are often a main answer, traditional heart meds, curbing and understanding physical and emotional exertion, anti anxiety meds, pain control via nerve stimulation, counseling to ease life changes, meditation and holistic pathways may all be answers worth exploring as tools for your individual journey. You may find you need a few of these tools or some form of all of them. One person's way to get over a wall or symptom may not be yours.

Boot Camp demands all awareness of your body's reactions and an excellent communication with your family and friends, cardiologist, GP and Pharmacist. Whether they know it or not they are in Boot Camp with you and can assist you or hinder your management! Be sure to keep those in your squad who will be the best for your success.

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9 replies   

cashmere8

This is so amazing to me how providence has it that you can use your gifts, anywhere, not just the classroom!!
You have made a huge impact on me and my outlook on this stinker beast of MVD, THANK YOU THANK YOU ! I'm reminded of the saying "when God closes one door He opens a window" , something like that anyway : )

pagal

Annette, Unfortunately our boot camp doesn't have an end date. Finding the ways to get through our hell isn't easy either and every day brings on a new challenge. I just completed day 31 of 35 of EECP treatment but I think that this treatment is the thing that's wreaking havoc with my spine. Hoping that the treatment helps the veins but now I must get another spine injection. Got a kick out of your boot camp series...Be well. Patty

Artista

So true this learning continues and do we ever truly graduate? I think I mean the Boot Camp for me was worse in the very beginning of acclimating to your own reaction, others and how to advocate for yourself. It is afterall getting ready for the war! I simply think some mental parts grow stronger in this time. Yes... We must keep fighting new battles but being the newbie in it REALLY felt like a Boot Camp to me. Myths shattered and strengths newly tested.

Hope you are finding some level ground soon! Glad you got "a kick" out of boot camp writing... Pun intended???? Lol
spinal injection.... Can you explain that further? This have to do with pain diversion?

light and clarity in all ways!

Artista
  • By Artista
  • Reply 3276586 · In reply to 3275894 by cashmere8
  • August 8, 2012 at 11:27 pm
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Sonia, I am heartened if anything here helps. It is all of you who spur me to want to stamp out ignorance of this disease. I get more angry over and over when I keep hearing more stories of the lack of proper treatment. I can say I have seen some headway in the almost two years since this journey began but it is painfully slow. We need so much more. I am hopeful.

Here's to battling together!
"if you think you are too small to make a difference, spend the night with a mosquito." - African proverb

pagal

Do find level ground and then for no apparent reason the ground seems to just cave in underneath you with no advance warning much like a giant sinkhole. You know that the sinkhole can be repaired but it takes time and aggravates those involved. In my case my docs just don't know if my sinkhole is caused by the MVD, the thoracic disc herniations, the GERD or possible adhesions from lung/chest wall surgery. Anyway, the pun was intended, gotta keep on my toes for my job as a H.S. teacher.

Artista
  • By Artista
  • Reply 3277127 · In reply to 3276707 by pagal
  • August 9, 2012 at 8:15 am
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A sink hole! How appropriate! I can only imagine having this condition in conjunction with other issues. So sorry you must juggle this all! I know in my case I have mild stomach issues (managed with diet) and was healthy otherwise. Even if I am steadfast and 'behave' with no exertion it will still kick up when it wants to. Fickle Beast- even if I don't poke a stick at it. : /

I miss teaching. What subject do you teach?

The EECP treatment I confess to not knowing enough about. I am mostly tryingvto aid my cellular function and vessel dilation. The culprit being dysfunction at cellular level, I am interested in how this type of treatment could help MVD? Is it a sort of forcing of the blood to open vasculature better? Always curious!!! Sounds as though it has been a rough treatment. Why does one thing possibly help one but then hurt another?! : /

swissdots

I've followed your 3 part story with much interest and enthusiasm because it's an accurate portrayal of living with this dysfunction. You bare your soul Annette.

My good days are very, very good and my bad days are very, very bad.
When I am blessed to enjoy a good day I've thought to myself: "It's gone," but like a thief in the night it returns and painfully reminds me of its existence.

Those of us in the trenches battling this dysfunction would easily earn medals in: courage, selfless service, fortitude, bravery, determination & commitment. These qualitites pretty much describe my heart sisters.

I love your candor and honesty.
Swiss

Artista
  • By Artista
  • Reply 3280809 · In reply to 3277500 by swissdots
  • August 10, 2012 at 1:02 pm
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Swiss- I just hope my levity and trying to be a little inventive with a more entertaining version will make it easier to read and understand part of the scope of non-obstructive heart diseases in general. I read so much research and dry talk, I am like my father, who always infused humor when things were not so good.

What a great point about those battling this winning medals on bravery, perseverance and many other qualities that are tested daily at times. I think patience has been the worst battle and I always thought I WAS patient. BUT being a patient wore out my patience! ;)
I hope for a day this will be better recognized if not understood. Something does have to give!

love and light in all ways sister! <3

pagal
  • By pagal
  • Reply 3281874 · In reply to 3277127 by Artista
  • August 10, 2012 at 8:38 pm
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Hi, I was diagnosed with fibro by my rheumatologist about 3 yrs. ago and was prescribed numerous meds which didn't work for various reasons (mostly bad side effects). 2 yrs. ago in the search for what was making my life unbearable, I met with one of the few fibro specialists in the US. Dr. Derek Enlander out of Mt. Sinai, NY confirmed that I had fibro/chronic fatigue but also felt that I had MVD. This was the first I had ever heard of MVD and he explained it and told me that perhaps the EECP treatment would help (he was one of the lst doc to have an EECP machine). Dr. Enlander isn't a cardio and I was still having extreme chest pain and my local did a cath and told me no major heart issue. (changed local doctors after that.)
Went back to my NY cardio and he diagnosed MVD by process of elimination started me on the Ranexa which has been a lifesaver for me.

Fast forward to this spring when I started with the chest pain again and being that I'm at the highest dose possible of Ranexa and also take Imdur I was afraid of what was in store. NY doc told me to try EECP and local doc said that I have nothing to lose except time (35 daily treatments) but he has found that it's been successful in only about 50% of his patients. I have 2 days remaining and it will take a bit to see if it will be helpful to my heart. My rt. rib is killing me which is the site of my lung surgery so I don't know if the thrusting motion of the machine is responsible. Google Dr. Debra Braverman and EECP and also Dr. Derek Enlander and EECP(someone did a video on someone actually doing the treatment on one of his websites) and these can give you a good understanding of what it's about.

I'm a H.S. special ed teacher mainly teaching freshman. In that I'm highly qualified in NJ to teach history, English and science, I'm sent all over the school. This yr. I'll have one resource class in Environmental Science and 2 mainstream courses in English and 2 in science. The freshman mentality is always interesting, there's never a dull moment.

Swiss, I love your medals!!!

I'm in rib pain this eve. and have taken my pain meds so please excuse any/all errors for I'm more than a bit loopy...

Be well and have a great wkend. Patty

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