My Story, My Truth, My Fight
Is it true that it’s only true once its on FB or the Internet in general? Does FB, the Internet, or social media really have that much power? Or, for those of us old enough to remember times before “www” anything, is it possible that it is simply; once you make it public, it becomes more real? More true? Or that you must face it?
Well whatever it is I am going to share a health update with all of you. I usually limit these…not because I try to hide, mislead, or don’t want people knowing my personal business because let’s face it…being a public figure, advocate, and philanthropist; in my career and community for so many years, my life has always been an open book. So why now? Well it’s kind of funny because I can post an old modeling or pageant picture and receive a ton of “likes” but my hope is that although this isn’t as sexy, I will receive as many positive thoughts and prayers. And if this is the first time you are learning about me; I want you to have a little bit of insight on me personally; not just what you can find out about me on Wikipedia.
I believe in the power of prayer and my continuous health issues have now come to the point in which I can’t “hide” and I MUST face them head on and can not do it alone. My family and closest friends have carried so much burden on them and I am beyond blessed for ALL of them but some days I see the pain and how much harder this has even been on them than myself. So I ask you to include them in your prayers as well as you read this.
Many know I had a TIA or mini stroke on December 28, 2014. Yes date specific because that is the day my whole life changed. Although initially I felt I had used my strong belief in the power of our unconscious mind to regain the feeling and movement to the right side of my body and my ability to slowly talk again…other issues seemed to keep lingering over the months and years following. Even upon my discharge the hospital had told me there was nothing I could have done to prevent my TIA. I was fit, active, healthy. In fact, the photo below was me just weeks before.
But, while they investigated the lingering problems; the doctors told me that my mind couldn’t cure everything. I could barely stay awake during the day. I was passing out or what they call having, syncope, episodes. My entire body; both sides especially all of my main joints were in pain. My throat kept closing making it difficult to breathe. The doctors were able to diagnose some of the easier issues fairly quickly in the scheme of things (Note: months is considered quickly when it comes to medical and science). I have Fibromyalgia and what they call EOE or in laments terms asthma of the esophagus. But eventually they hit a brick wall as I continued to have syncope episodes; some so scary that when I would regain consciousness in the hospital I had no memory of what happened or where I was. Luckily I gained a new PCP (Primary Care Physician) and one that has continued to fight for me since there are days I’m just too tired to fight. She ultimately referred me to Mayo specialists in Rochester, Minnesota.
Mayo confirmed the initial diagnosis that my initial specialists gave and added POTS (Postural Orthostatic Tachycardia Syndrome) to the list. Unfortunately like the others; there is no cure and it is difficult to treat as it is an autonomic aka automatic disorder. So basically the things you may take for granted like your blood pressure readjusting itself (which it is doing 100% of the time) like each time you move, get up, bend over, walk, or as I’ve discovered even just going in an elevator; my “automatic system” MAY or may not decide to work for me at that very moment. Some times it works, some times it doesn’t. Some times it does not send enough blood from my heart out, other times it may send too much and also make my heart race. For me; there is no rhyme or reason and unfortunately sometimes no warning of a syncope/pass out about to happen. I say “for me” because like anything; everyone is different. This ‘autonomic’ issue only added as you can imagine to my already issues of fatigue and body pain. My doctors taught me easy lifestyle modifications I could do to limit the issues caused like slowing how I move, drinking more water; so for me that went from about 2 liters a day to 3 liters a day (and even more upon my move to Colorado). I even started what I call a salt pill. Because that’s what it does…helps my body to retain more salt in hopes of keeping my blood pressure up. My BP prior to my TIA was healthy 120/80, I worked out, ate healthy…to my BP dropping to 85-90/60…so although my cardiologist admitted they HATE telling their patients to increase their salt intake; I was a “lucky one” haha.
Over that initial year and a half I realized I should’ve bought many lottery tickets…but hind sight is always 20/20.
Unfortunately to date the ‘salt’ pill alone has not increased my BP, and I’m still ‘lucky’ if I have a doctor appointment where it does hit 100…but we have noticed it jumps either during a POTS attack or if my pain is well surpassing ’10’ on the medical 1-10 scale. They have also added blood pressure medication to help keep my blood pressure up in order to try to avoid it dropping on its own too low.
So after living a very blessed life to pretty much having no life. No longer having the ability to plan anything that required firm committments, not having more than 1-2 days a week that I was able to actually spend time with my kids; I had started to wish I only had my Fibro and EOE to deal with. It definitely started to weigh on me; not just physically but emotionally. But of course I tried to stay positive and only show the public the Jacque they knew.
The reality is that trips and doctor appointments were just becoming the norm and frustrating because unfortunately doctors in the ER or even hospital are not familiar with POTS. And they don’t like communicating to even their own clinic doctors.
Then a new problem appeared. It was becoming difficult to have regular 
bathroom functions and at the same time I also couldn’t eat food without feeling ill. That started in December 2015. After months of more testing, more specialists, more lifestyle modifications and finally trying to just keep weight on through Protein shakes; by the end of April 2016, even fluids became difficult to have without becoming violently sick and in extreme abdominal pain on top of my daily body pain and fatigue. Routines of flushing my system every morning, taking anti nausea medication every 8 hours, and again trying to live off a liquid diet (and not the liquid diet I joked about years earlier when I was younger) became the norm and even the taste for food left.
My GI specialist, known as one of the best in my state, wanted to try to ‘trick’ my abdominal nerves to see if we could get the food past my stomach into my intestines so that at least nutrition would be absorbed. He said he would much rather do this than have to have the conversation with me before I even turn 40 about inserting a feeding tube…I agreed. Well guess what…the insurance company didn’t agree and decided it was not necessary and they denied the procedure. Shocker, right? Why do we have doctors much less specialists if all insurance companies have now decided they are educated enough about our medical status that they are the new specialists. So, after my doctor had examined me and after feeling around my abdomen, causing me to throw up 6 times in his garbage can in his office; he requested the injections as urgent to the insurance company. Still denied. He even took it as high as he could with appeals and did a “peer to peer” review/plea with the insurance ‘doctor’…still denied.
The diagnosis of the cause and issues with my GI system…my GI Specialist has said is ‘collateral damage’ from my POTS. It made sense I guess. If blood flow isn’t being regulated and mine seems to be all over the board and its tired out itself, since I sleep most of the day and most days…how would the rest of my body know how to work. But then it worsened. He said because my medical situation is so complicated and my weight loss had continued becoming dangerous he feared the feeding tube would only prolong life for me; not fix the issue anymore. He didn’t know what else to do and referred me back to my previous specialists at Mayo.
Well my insurance didn’t cover Mayo. I had to change to state insurance that year…another blow to the pride…since I no longer had income to pay for the independent plan that I had liquidated everything to previously pay for the previous year. I inquired about switching carriers but that was not an option. And all the time I was also in an appeal with Social Security Disability. Yes, an appeal after another denial. Because all those years I maximized out what I could pay in to our government; I was being discriminated against for being ‘too successful.’ Yes, the Social Security representative told me that exactly; along with the fact that it was legal for our government “to discriminate.” Trust me I would LOVE to be able to work but my focus became fighting to continue on living for my family. For my friends. For me.
Not posting negative updates does not mean you are faking or hiding or even not facing head on challenges. It doesn’t make it anymore real or true just because it is on the web; it just makes it public. Smiles can be fake, smiles can be real, neither the web nor the picture will tell that; only the people behind them.
So if you have read this to the end, I only ask the public for prayers. Prayers for my doctors that insurance WILL cover, to think of new ideas; prayers for my family and friends that continue to fight for me and give me strength on days I don’t feel that strength, and prayers for yourselves to continue to live a blessed and healthy life. Never take a day for granted and love everything God has done for you and will continue to do for you. Because it IS FOR you NOT TO you.
Case in point: I had wondered why after being the same weight for so many years why I had all of a sudden put on unexpected weight last fall; my doctors even checked my Thyroid at the time. I now believe that was just one more thing God was doing FOR me knowing what my future had in store for me. So I continue to believe he will work FOR me; FOR ALL. And I believe in the power of prayer.
Yes, my nervous system has failed. Yes, I have Fibromyalgia. Yes, I have asthma of the esophagus. Yes, I have depression. Yes, I have POTS. Yes, my GI system is failing. Yes, I have a walker. Yes, I can’t walk far without having to rest. Yes, I sleep a lot. Yes, I get sick a lot. Yes, I forget things. Yes, I miss out on a lot of events. Yes, I jump every time my dogs bark or my children yell because of my nerves being shot. But I will NOT let this define me or take the time I do have to love life and all it has brought me. I have always said and will continue to say that if I can continue to inspire even just one person each day, I will continue to be fulfilled. And I WILL be there every day that I can be. God is Good.
I AM a mother. I AM a lover. I AM a friend. I AM a sister. I AM a daughter. And I AM a stubborn fighter.
Instagram: @JacqueGeorgia FaceBook: @RealJacqueGeorgia Twitter @JacqueGeorgia
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