So, with all my learning, and still ongoing discoveries about the heart and Lupus,I post this. Our heart is the gatekeeper of all our lives, inhabiting our every moment of life. I now take this much more seriously. Step back on my issues here, I have had symptoms that I thought were only autoimmune related. Although very painful, the symptoms had been monitored by my GP only, going back from August of last year. As the GP saw me weekly to biweekly, he dismissed much of anything I presented with or showed him,ie, journaling, photos. I began to power point my visits, as I knew something else was wrong, very wrong. The only agreeable plane we shared was my blood pressure was not going well, nor responding to any of the medications he prescribed. Finally, GP gave in and referred me to a Cardiologist. Best thing GP ever did for me. This specialist saw first hand what my GP could not, or ignored. The specialist experienced for himself an episode I had right in his office, where by he sent me directly to the Emergency room. Aside the symptoms, my Blood Pressure was at a deadly number for my body type, and other conditions, 198/139. I almost lost my way, so to say. The specialist ordered all the correct medications, labs and tests immediately! All I remember was a nurse asking me if I had a proxy-or DNR.. My moment came, and they saved my life. I am grateful and so very blessed. I am just sharing this with you all now because I truly respect life, and all of you. Medically, my cardiac rhythm was so unstable, they couldn't get a true O2-sat, or pulse, in part because my raynauds was so flaring my hands were purple and blue. Oxegen loss, I lost my speech, and brain activity. I am now on a large cocktail of medications for, BP, Cardizem 190 mg's daily. Procardia 80 mg's daily Lisinopril 5 mg's daily, Two of which I had been taking in lower dose before this My kidneys were compromised, hence why I posted "craving Salt".I have to do a 24 hour urine weekly.......I now have a heart arrhythmia, rare one,I will get the diagnostic name later, caused by this epic event. I have to wear an exterior heart monitor, and send it by phone, daily to the Specialist. Kind of neet, technology these days. I just hold it to the phone, and it sends the results to there computer, and Dr. Then they call me back, and tell me what combination of BP medications to start my day with. I must take my BP, heart rate ect, 5 time daily and do this, the Specialist office continues to tell me what medications I can take, and when. All of them, for all my conditions now. They believe my Chari-malformation is playing a part in my heart, and brain. The brain is not connecting with the heart properly. Lupus has affected my heart! But, my ANA-DNA, are coming back seronegative, with elevated RBc, and scatt in urin.The cardiologest is consulting with other professionals about my very unstable Labs that must be done weekly, full blood counts, lipids, WBC's, adrenal gland, this one for possible compromised, as it is the organ that dictates the body's pace seitonins, and kidneys, blood oxygen levels, and CT scan scarings. I can't swallow well anymore, all things in my mouth go to the left only. Stroke, was ruled out, as possible ishma or TIA. Doctors say, that dealing with a multi-condition, multi symptom patient is difficult as so many things can set off the others. You all know what I am talking about, I am sure. I apologize, to everyone, as this is my longest post ever.My degenerative disc disease is flaring, so that showed on the MRI. We put that on the back burner because, I have to get the Heart right as rain first! So, my Heart is evolving, struck down by all the symptoms I presented to my GP so many months ago, and my postings here were all connected. Could this life altering event have been avoided?? What do you all think, and has anyone ever had this happen to them My heartfelt learning advice is listen to your body, implore those who care for you to take that second look, as it could be the last....Thank you all for listening to me, when medical professionals did not.. Bless you all, and I do so value your posts and imput. Love the heart, treat it like gold, do not brush off your symptoms, please.. Wishing you all health, peace, and blessings... thestormy sunshine
Thestormy sunshine here, Update on learning about... - LUPUS UK
Thestormy sunshine here, Update on learning about the Heart🧡
Hi Storm,
What a medical encounter (that's putting it mildly) you have had. Thank goodness you got medical help you had, that must have been scary.... Glad to hear they are closely monitoring you.
I hope you continue to get the treatment you need. It hard to be heard with autoimmune diseases....time & financial pressures to get the care sometimes....
Wishing you well....ml
Thank you Maggielee for your support, and reply here. I am sorry I didn't post sooner. This epic event has truly given me a different perspective on professionals, and on our lives. As I and the good health Doctors are still working on the full just causes. I have to sit tight, like a time bomb, waiting. Many of us here are sent to wait. Our times will come, if we can be patient, patients so to speak. I have little feelings about what is yet to come. Everyone here is so kind, willing to read or reply, and to those who post, it means alot to our hearts. I am grateful to you for responding, I hope you are well. Be blessed, thestormy sunshine
Storm, your battle for good health continues... You have such a lovely spirit & I wish so much that you get some health improvements soon....
I try to be a present being and not go to far ahead of myself as It doesn't seem to benefit me...
In other words, health & loss of it can be a scary place to imagine in my mind...
I wish you some peace in amonst the medical turmoil around you and that the right medical healers are present to help you...
My thoughts are with you & many cyber hugs. ..ml
Being present in the moment is the greatest gift we can give, and receive. The universe will make its moves. Like chess pieces, our turns will come"Check-Mate". I will never give up, on myself, or any of you sweet people. All my comforts, joy, blessings for your life, thestormy sunshine
Oh, storm, you have really been through something frightening. It does sound serious. It would be hard to know whether the GP should have sent you to the cardiologist sooner. It depends on the information he had at the time. The person who would know that is your cardiologist possibly, but he may not want to second guess. If it is concerning you, maybe just ask both doctors if they could have picked up faster on your problem.
We need our hearts. I hope your 💜 stays strong with the new medications.
xK
Hi KayHimm, It is of tremendous gratitude that I thank you so much for replying here. This was the worst of my worst days ever. I know so many have gone through difficult times. All people here have stories, posts to show it. My symptoms, complaints, and rantings just fell on deaf ears of professionals. It breaks my heart to know the end of me journey is still on going as the Doctors do not fully understand the courses that caused some of this. They are working on it. And so am I. This event has impacted every inch of my life now. I thought it was hard before, but life throws curve balls sometimes. Sorry, it is hard to type as my hands and eyes do not sink-up. Silly me, I am thestorm, I will make due with what the universe sprinkles on me. Just differently, as it is my new now and forever. You all are of great comfort and support, that my so tried body needs now that I am in parel. Thank you again for caring, for sharing, and for making all our journeys here a little less painful. I wish you good health, kindness always, hub friendship, and peace. thestormy sunshine
Wow poor you I knew you were suffering but you really have been through it. Glad you are being looked after by cardiology now . 🤗xx
Hi Stiff, blessings to you too.. I have many Doctors attentions now. I am grateful. But broken inside that some turned, when they should have zagged. Because of all of you, is why I am still here in this great hub, a place of caring, listening, sharing and support. That is something we all need, Keep being you, be joyful when you cannot, be helpful when you are week, and the good Lord will carry us all. Be well friend, blessings thestormy sunshine
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