It's been a crazy roller coaster this past year - my life has changed dramatically!! I want to write and share with you my illness and how it all began.
For quite some time, I've been experiencing issues with my health but this year it has gone downhill. It all started in May 2019 when I had an episode during my lesson at the rink, where I got really sick and almost fainted sign #1.
I have been experiencing severe pain/burning on my feet for a while as well as cramping in my calves and terrible pain on my hands (stiffness) and knees were getting worse sign #2. I began to experience dizzy spells, chest pain and a dry cough that did not go away, sign #3. This prompted me to go see my doctor - had a physical and she ordered tests and found blood in urine sign #4 - which she ordered an ultrasound and more blood tests.
I have been experiencing severe pain/burning on my feet for a while as well as cramping in my calves and terrible pain on my hands (stiffness) and knees were getting worse sign #2. I began to experience dizzy spells, chest pain and a dry cough that did not go away, sign #3. This prompted me to go see my doctor - had a physical and she ordered tests and found blood in urine sign #4 - which she ordered an ultrasound and more blood tests.
Ultrasound: results: (not good)
Action: Get a CT - See Urologist
Action: Cystourethroscopy
Action: Cystourethroscopy
CT Results: Swelling kidney and stone/cyst, cyst in liver, Pericardial Effusion (excessive fluid in the heat and inflammation)
Action: See Cardiologist - Echocardiogram
Blood Test: (not good) See a Hematologist - leukopenia & other issues
Action: See a Rheumatologist
Action: More blood work
Action: More blood work
Action: Chest X Rays - Echocardiogram #2
All these doctors, so many tests, blood work and trying to find answers was the most stressful and draining. Not to mention that I was in severe pain and my body was deteriorating quickly. I was at my wits end because, the main reason to see a doctor was for my pain in my feet and cramping calves.....with no answers yet.
It's sad to see myself like this because I was so "active and go getter" and now I am living with pain on a daily basis - there were days when my mind would say "one thing - but my body says another." To just get up from the bed or a chair to take 2 steps is an ordeal. Christina (youngest) took a leave of absence from med school to stay home and drive me to and from doctor appointments, and tests - Juliana (my oldest) helps me with my daily routine and support.
It's sad to see myself like this because I was so "active and go getter" and now I am living with pain on a daily basis - there were days when my mind would say "one thing - but my body says another." To just get up from the bed or a chair to take 2 steps is an ordeal. Christina (youngest) took a leave of absence from med school to stay home and drive me to and from doctor appointments, and tests - Juliana (my oldest) helps me with my daily routine and support.
Finally!! the pieces of the puzzle are matching up and all my symptoms (kidneys, heart, bones and leukopenia) - all comes down to one thing - Lupus SLE.
Lupus is an autoimmune disease that occurs when your body's immune system attacks your own tissues and organs. There are 4 types of lupus - and it affects every person differently.
1. System Lupus Erythematosus (SLE)
2. Discoid Lupus
3. Drug-induced Lupus
4. Neonatal Lupus
Systemic Lupus Erythematosus (SLE) is a chronic (long-term) debilitating disease that causes systemic inflammation in multiple organs - It affects the joints, skin - as well as kidneys, blood cells, brain, heart (pericardium) and the tissue lining in the lungs (pleura). Unfortunately, there is no cure for Lupus SLE, however, it's NOT contagious.
1. System Lupus Erythematosus (SLE)
2. Discoid Lupus
3. Drug-induced Lupus
4. Neonatal Lupus
Systemic Lupus Erythematosus (SLE) is a chronic (long-term) debilitating disease that causes systemic inflammation in multiple organs - It affects the joints, skin - as well as kidneys, blood cells, brain, heart (pericardium) and the tissue lining in the lungs (pleura). Unfortunately, there is no cure for Lupus SLE, however, it's NOT contagious.
Last Month:
I received the news...I was not ready for!! I was told i have Lupus. I am scared, lost and have so many questions.
I started treatment asap and the side effects are horrible. With SLE I have to avoid direct sunlight which can cause "flare up"
I am strong and I have my family who are there for me to help me get through this - I have amazing friends that have been following my journey and I am blessed to have you as my friends. Thank you for all your thoughts and prayers!!
Moving forward:
I am fighter....will get through this - with treatment, support, change of lifestyle and diet!! Will see what the future holds.
If someone you know or love has lupus be understanding, listen educate yourself on the disease and be compassionate. Knowledge, awareness is Key.
FYI: Listen to your body - seek help and don't let doctors tell you "you don't have nothing serious." I did not take NO for an answer, I went beyond what the doctors told me and sought out help and answers. I took it upon myself to visit with specialists - and here I am today!!
If someone you know or love has lupus be understanding, listen educate yourself on the disease and be compassionate. Knowledge, awareness is Key.
FYI: Listen to your body - seek help and don't let doctors tell you "you don't have nothing serious." I did not take NO for an answer, I went beyond what the doctors told me and sought out help and answers. I took it upon myself to visit with specialists - and here I am today!!
Remember, just because I look okay on the outside - doesn't mean I am not in pain!!
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