Thestorm here adding in regards to my late Saturday post 🧡

[thestorm]

I wrote a new post Saturday evening, called," update on what I am learning about the Heart"🧡 and about all that was going on with my symptoms, medications, and care. I am posting to add to that post. Please do not take the post as looking for Doctor blame. I was expressing what transponded for me, and what medically has happened. Because I presented to my GP for many months with on going symptoms, the underlying health condition now called "Myocarditis" from my SLE Lupus were some of the symptoms of such. My GP did not recognize these red flags from August of last year. There for great damage has been done to my body, and heart, not caused by a detectable blood lab result. My GP did not apply the proper labs needed to help find these on going problems.As Myocarditis can be difficult to diagnose. GP did not send me to a Specialist sooner. I am upset with him for dragging feet on all; my symptoms. I appreciate everyone, respect any input, and regard you all as great supporters. Peace, and blessings thestormy sunshine

[stiff19]

Hi storm

You have Every right to feel that way and it’s understandable. I’m sure people think I just blame docs, which I guess I do the ones I’ve moaned about as we suffer at their ignorance or lack of knowledge at times.

It seems everything is difficult to diagnose, or a waiting game, for years at times and I myself wonder what damage could occur if something be it that can cause damage.it certainly damages your faith and trust and is mentally damaging . No one says any one doctor has all the answers but when they don’t know then like you say refer you to a specialist who might, at the very least listen to and address symptoms when a patient has felt a need to visit you,if they don’t then they should refer you on until someone can help. Teamwork. Indeed I think all docs should work in a team or pairs as what one misses another may pick up on or see from another perspective.

I used to think our nhs system here was great years ago but so many flaws now , and having to put your health in the hands of one doc who may be no good for you is not the way it should be.

I recently see a team and it was interesting to hear different thinking’s bit like ‘house’ but unfortunately it’s still the waiting game. I too am upset, and what upsets me the most is not being referred on when they don’t know and of course being heard , no one knows all my symptoms, they (there are docs like it I’m afraid without pooping them all) hear without listening , see without looking and it’s just going backwards not forwards. I still have no answers but at least the couple of good docs I’ve seen have referred me because they don’t have the answer and not fobbed me off as I have had. If I didn’t need help I wouldn’t be wasting my life looking for it,lord knows I’d give anything for my life before all these health problems.

I am so glad you are learning as I think we are left to become detectives ourselves to help ourselves (without the wage), and armed with knowledge on your problems now it will help you ,and I just hope you are now being cared for properly.

It is so hard when doctors drag their feet at your expense and I’m sorry for you to suffer this and send you my best wishes and hoping those wishes at least may be of some comfort and support. Take care 🙏x

[thestorm in reply to stiff19]

O' dear Stiff, blessings to you for your reply, as I know you are going threw so much yourself. I say, keep on going, never give in or give up. So many posts here show us that we all can overcome the paths before us. We just wish the otherside would hear and listen to us more often. As our bodies do sing a song. It may not always be the song we want, but as they say, the songbird sings for a reason, as Spring is upon us all. We have to be like the birds, of a feather, flock together, then the "Cats" will hear us,LOL. Trying to make some fun from all this. My body was sending songs out, I heard them all quite loudly, but I guess I didn't sing loud enough. Did not want to come across as a heretic to professionals, you know. I am disarmed so to say. My whole body is in transition. Daily I do not know what to expect as all of us here can attest. For me, I now can cry, truly. As I had no tears from Sjergons for so many many months. My left side goes through paralyzed spats. The mind works, well, sort of, but the brain is sending the wrong signals. I now have to rework my daily grinds, meaning just to get up, wash, eat, dress, those things we can take for granted plage me. But, because of you, and so many, many people in this special hub, I can go on. Baby steps. Stiff,I cannot thank you enough for letting me have a go here and say what I experience, it brings my heart comfort. I hope and do pray for everyone including you here, that dear Lord will help us keep helping one another always.... My prayers to you Stiff, blessings and comforts that you will also have some relief, and calm in the days ahead. Keep me posted... Kind blessings, thestormy sunshine

[stiff19 in reply to thestorm]

Dear the storm

You have my heart I’m so sorry and wish you all the best , I’m sure I speak for many when i say I am here if you ever you need to talk, especially through such hard times, you will rise above it all I’m sure .you did right to post how you feel and felt , It’s hard to go through those health problems and those frustrations and upsets on your own and best not to bottle it up to fester.

I hope you are making some recovery and send all my best wishes 🙏xx

[Jhpc]

You’ve been through the mill and back again Storm, so frustrating for you to go through what you did and are still going through, when you knew something wasn’t quite right and your GP couldn’t steer you in the right direction earlier.

Wishing you a speedy recovery x

[thestorm in reply to Jhpc]

Thank you Jhpc for the kind words and support. Yes, sadly, we have to be our own advocates, and sometimes literally knock doors down, and fall down for health professionals to notice. It is frustrating and very complicated with all of us here, having multiple conditions. I hope I will rise above the grade, and come out of this "Storm",. Inspired by people like you, and so many here. It can be done. I hope you are well, and take care. peace and blessings thestormy sunshine

[Jhpc in reply to thestorm]

I can relate to your back issues Storm, I have problems with a bulging disc at the mo, which is causing me havoc a lot of the time when walking, just waiting to see what the spinal clinic has in store for me.

Take care and get well soon.

[thestorm in reply to Jhpc]

Hi Jhpc, You keep moving, and that back will stay strong in your future life, if we can move, move, properly of course. Do all that you can to get the clinics attention to the point do you keep a journal? Have a go at writing your daily experiences, and how the back affects your daily living, for you, and your loved ones.The impact it has, is important to discuss with clinic professionals. I pray, for your diffectuties, for you to be healed, and be well. Thank you again for caring to reply. . thestormy sunshine

[Jhpc in reply to thestorm]

Yes good advice re logging how it feels and affects my daily living. I do try to keep moving I don't let it stop me. A bit worried how I'm going to cope on a short break to Krakow tomorrow with my hubby, thought when I booked it I would be fine after my injections...

Thanks again take care Stormy.

Heather. X

[thestorm in reply to Jhpc]

You and your hubby have a good time in Krakow. Poland? Some of my late family from there. I will always pray for you, and all... The injections do take a bit of time to work in, as the ones I had seemed to help after 3 days. I wish you safe travels, and healing. Let me know ,if you would like to, how you fare after your break... Blessings, and peace.. thestormy sunshine

[Lupiknits]

Thank you for taking the time and thought to share everything with us. You’re a ⭐️ and I hope things improve for you 💕

[thestorm in reply to Lupiknits]

Thank you Lupiknits for your support and caring words here. I do hope to be the star that shines past the darkness into the good Lord's light someday. My road is long and hard, having to say, the hardest one yet. But, because of all of you here, I read so many heroic posts, that I cannot help but be up-lifted. I so do appreciate the time you took to reply. All my blessings and prayers to you. thestormy sunshine

[thestorm]

Just a fond question here, did anyone read my first post that I so detailed on this hub, written and posted on Saturday? Only asking because it details why I posted this one. You all are so kind in replies to me, and I shared my heart with all of you wonderful, caring people. I sincerely, heartfully, Thank each of you for reading it. All my peace and blessings to you.Xxx thestormy sunshine

[Lupiknits in reply to thestorm]

Yes, I did. x

[thestorm in reply to Lupiknits]

🤗🤗🤗💛💛💛