I will never forget that phone call. The day I found out that I had a life threatening disease.
Warriors-
Chronic illness, how did you find out?
Early on…
Looking back, most of my life I struggled with illness. As a young child, I had rashes, bladder infections, reactions to vaccinations. I suffered from anxiety, depression and OCD. I had funny little quirks and also emotional issues. As a teen I suffered from stomach issues, kidney infections,mononuclosis,heavy periods and an eating disorder. As a young adult, all this carried over and the symptoms increased. I also started having more “female issues” with my periods, uterus and bladder. Over the years, I started getting more aches and pains and migraines.
Over time…
I was 26 when I had my first son. I had a pretty normal pregnancy, EXCEPT for gaining 80lbs!! Yes…I took the whole, “eat for two” thing to serious!! My labor was a very long and traumatic one. After I had my son, my health started declining even more. More infections, more female problems, more aches and pains. A lot of “mystery” health issues. Over the years after I had my first son, I not only had numerous health issues but I also had several surgeries for kidney stones, gallbladder, endometrosis and a few exploratory procedures. I suffered from a lot of pain and tried natural supplements as well as continued to seek out what the root of the problem was. I knew that I had endometriosis as well as fibromyalgia. Those are two issues that my Mother had, that I had hoped were not hereditary. But at the time there was no explanation why I was having these other “Mystery” illnesses.
I had a very rough labor with my first son and I wasn’t sure I wanted to encounter that again. Both myself and my Son almost passed away during labor. The fear and anxiety were so strong but I knew in my heart that someday I MAY possibly want another child. When my oldest Son was 8 years old, I was told that I needed a hysterectomy. Around the same time I was also diagnosed “FINALLY”- after what felt like 100 years of chronic bladder & kidney infections, with a bladder condition called interstitial cystitis.
IC is a bladder disease that cripples your life. Bladder cramps, inflammation, frequency, chronic and extreme pain. Urethra and vaginal burning. I had lived like this for years. I remember having these issues when I was a young child. Years and years of antibiotics! I was relieved to FINALLY have a diagnoses, but the treatment was not so fun! 3x a week Urology office visits. Putting it bluntly- Spread eagle, catheter inserted (yeah-no numbing) and bladder filled with a fluid that had to be held for at least 1 hour! FUN…right?!!! NOT!!!!
It was my choice…
Knowing that I would never have children again was hard. When it was my decision it was okay, but now the Drs were telling me that it wouldn’t be possible. That is when I decided to try to overcome my fear and try for a baby. Thats when my 2nd Son came into our life! The one that completed our family!
I had a rough pregnancy with my younger son. I was told it was because I was an “Older” Mom. I was 35 years old at the time. I was sick all the time, I had gestational diabetes and I was high risk. I ended up having a c-section this time around instead of a natural birth. I was a busy Mom, I had a lot going on in my life. Lack of sleep, nursing and trying to balance it all. I started getting very ill after I had him and the Drs kept using the excuse… “You’re nursing, you’re an older Mom”, etc. I was in SHOCK!! Really? How many people breastfeed and how many people age 35 or over have kids. This was NOT the case!
I became very ill…
I became so ill that I nearly passed away. I couldn’t move, had no energy and just wasn’t right. I visited numerous Doctors hoping for an answer. I was even told by one Dr that I possibly had CANCER. Yes, a Mother of a 9 year old and a 8 month old baby. Not what you want to hear ever but as a Mom to a new baby, I just didn’t know how to handle it.
At this same time, my older Son started having health issues too. I had noticed a few things over the years and brought it up to our Pediatrician but I felt like I was getting blown off. So now on top of my health issues and having a baby, I was also dealing with the health concerns of my older son. Life was hard!
Doctors after Doctors, test after test and no one had an answer into what was going on with me! On night that I was admitted to the ER there was a Dr. that said he thought he knew what maybe was the cause. My test results came back that I had Parvo, Epstein Barr and possible Lyme disease. I went to a Naturopathic hoping to get direction. I remember after I switched to the new Dr. and my first appointment. The first visit with her she was astonished that I had went through so much fort so long. but as with most of us chronic health warriors, this is the cause! Too much for way too long!
I remember her saying to me…. “Sweetie its going to be okay! I think I may know what’s going on with you”! I was sent for labs and a few days later I received a call from her personally. I will NEVER forget that day!
Sweetie, are you sitting down? I have some news for you.
“Sweetie, are you sitting down? I have some news for you”.
First, it was unusual to get a personal call from the Dr. and next what she said to me was a little scary. She said that she knew why I was having a lot of my symptoms, that I had thyroid disease. I said “okay- Thank you for your help”. I told her that I will do some research and see what the next step was. She said, “Well that’s not all. “You have a disease called LUPUS”.
I just remember pausing. I had no idea what Lupus was, but the tone in her voice had so much concern.
I got off the phone with her. I went out in my back yard, grabbed a chair and found a safe place to sit away from the house. I burst into tears! It hit me…. What the hell? Lupus?? What is Lupus? She said it was life threatening and severe. I was in SHOCK! A million things went through my head. My life flashed before my eyes. What will my babies do without their Mama? My 9 year old has had me for 9 years… the baby is only 1 year old! My husband, my poor husband. He will be a widow and taking care of my babies.
I was devastated!
I remember breaking the news to my husband. We both cried. Why was this happening to us? I tried my hardest to take care of myself. I went to the Drs, ate healthy, took supplements. WHY?!!!!!
The Journey continued
Over the years I have been diagnosed and misdiagnosed. I have had numerous surgeries, procedures, been Poked, pricked…went through tons of testing and ran through about every damn machine they have!
Very hard Journey
I have been to every type of Doctor and Specialist. I have been near death, not able to walk, on the strongest narcotics out there. Opiods and so many medications that my closet looks like a pharmacy. I have been in a wheelchair, used a walker and cane and also been bed ridden. You wouldn’t believe the Journey I have been on! Chronic illness is no joke!
I will share more of my journey on other blog posts. But just to give you an idea… these are some the issues I struggle with-
Lupus, fibromyalgia, arthritis, osteoporosis and osteoarthritis. Raynuads, neuropathy, vasculitis. Epstein Barr- thyroid diesese. Spinal stenosis, degenerative disc diesese. Bulging discs and possible ankylosing spondylitis. Hypermobility syndrome, connective tissue disease, periformis disease. Endometriosis, fibroids, ovarian cysts. Intertistial cystitis. My bladder and uterus are adhered to my abdominal wall. I have a bleeding disorder. Migraines, myalgia and uveitis. I was told that I had lyme disease and also MS.
Don’t give up the fight!
I refuse to give up! We are warriors! We are survivors and we are here for each other! Do you suffer from chronic health issues? How did you feel when you found out?
All my best, xo Christy
