‘Since being diagnosed, I’ve never looked better. I’d rather have wrinkles any day than have this disease.’: Woman shares journey to diagnosis with Scleroderma, rare chronic illness

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Spots in Pregnancy

“I attributed my tight skin to having good genes. My father was part Indian and my mother was part French. Therefore, my siblings and I naturally inherited good skin. However, the tiny spots that appeared on my forehead and throughout I just assumed they were from my pregnancy and after I have given birth they would all go away. My next thought was, ‘If not, then I will begin using the one hundred percent cocoa butter cream that all the other pregnant women used during or after pregnancy.’ I also wasn’t too concerned about the darker spotty areas that seemed to have invaded my body…after all, I had been told that it was just a normal process while being pregnant!

Surely, if the cocoa butter cream worked for all the other women then I was certain it would work for me as well.

I didn’t experience the first-time joy of being pregnant. It could have been because of an aunt who passed away during childbirth. I also feared because of my age: I was already thirty-six years old and about to give birth to my first child. By now, many of my childhood friends were grandmothers, and here I am just having my first child.

I think if it were not for my family and friends assuring me that everything would be fine, the nine months would have been much worse for me and them.

Giving Birth

I will never forget I was at my sister’s home and it happened. Having read what is known as the pregnant woman’s bible ‘What to Expect When You’re Expecting’ had become my daily bread for the entire nine months. When the contractions came I knew that it wasn’t time to run off to the hospital just yet. I was pretty much over the Braxton Hicks contractions by now, I knew these were the real ones.
Now was the time to start getting myself prepared mentally because I was going to be in labor. I was actually about to birth to a baby boy.

I chose to have an epidural shortly after I found out that I was pregnant. The thought of me giving birth naturally without drugs was unthinkable, even my husband agreed that for peace’s sake of everyone who would be in the room, it would be best to give me the drugs.

selfie of woman in black shirt with braids
Courtesy of Yolanda Prichett

Honestly, labor wasn’t that bad, or maybe it was due to me having the epidural. Whatever the case, the entire event was about thirteen hours long. I was told by many women that labor wasn’t bad at all considering that this was my first time.

On June 30, 1998, I gave birth to a beautiful seven-pound thirteen-ounce baby boy. During one of those hard pushes, I remember the nurse telling me that she could see a lot of black curly hair, and within minutes there he lay in my arms, a beautiful baby boy with a head full of thick curly black hair. There he was, peering up at me as if he were saying, ‘So we finally meet.’

It was instant love between us.  All the fear, the uncomfortableness of carrying a whole human inside for nine months was all forgiven the moment I looked at him. He was perfect, he was healthy, and he was all mine until my husband reminded me that he too played an important part in the matter as well.

Carrington Blake is the name we chose for him. It just fit him perfectly. My life could not have been more perfect. I had this wonderful husband whom I dreamed of. Although he maybe couldn’t give me everything I desired, materially, he did give me what I needed which was unconditional love. And now he had given me the missing piece of the puzzle that made my life complete a beautiful healthy baby boy. What else could I ask for?

The Diagnosis

It was during my routine visit that my doctor noticed the spots on my forehead before leaving her office. She wanted me to take a blood test just as a precautionary to rule out anything she may have suspected. I was a little worried; however, she assured me I would be fine. I tried to believe her, but in my mind I began to wonder why did she really want me to have a blood test if she didn’t think anything was suspicious about the tiny spots on my forehead?

It would be a few days later that my doctor called for me to come to her office. When my husband and I walked into her office I could see that what she was about to tell us wasn’t going to be good. She proceeded by saying, ‘You have Scleroderma.’ I remember saying ‘Sclero- what?’

You have Scleroderma. It is a rare autoimmune disease that causes the skin to harden. Not only the skin but the internal organs as well. The more she explained to us what all the disease entailed, it all became clear as to why my skin was so hard and waxy looking, but again I attributed this to me having good genes and being pregnant. Not knowing I had a ravening disease that was raging rampant in my body. When we left her office, I knew this battle would be a race against time.

selfie of woman in black shirt
Courtesy of Yolanda Prichett

It all began to make sense as to why I was so tired all the time to the point of being lethargic. I remember being at work and my supervisor coming to me and suggesting that I go on disability because she was concerned I was over-exerting myself. It wasn’t that my workload was too much to handle even being pregnant, but she was right. By the time I made it home, all I could do was climb into bed and hope this feeling would pass with time, and again I assumed it was a normal process of being pregnant.

The ride home was long and quiet. What would usually take fifteen minutes for us to get home seemed to have taken an hour or longer, I don’t think we were in a hurry to get home because we first needed to process what we had just been told!

For the entire ten years my husband and I had been married, I had never witnessed him crying except on our wedding day. We finally made it home and together we sat in the car and cried. I remember saying to him that I had just been given a death sentence. I can remember my husband looking up at me with tears in his eyes and his words were, ‘You are not going to die.’

The night was long and I held my baby boy in my arms while my husband held me in his the entire night. I didn’t want to let my baby boy go I kept thinking ‘who’s going to hold you like me.’ I must have cried myself to sleep that night because I can’t remember when I stopped crying.

The World Caving In

I resented the morning because I had to go and see a lung specialist. They would look at my lungs to see if the disease had attacked there because the heart and the lungs are usually the first two places where the disease will usually attack. Sure enough, the disease had begun to invade my lungs. You have tumors on your lungs (scar tissue), the specialist said. I remember the doctor having this stoic look which made me afraid of him. Later on I found out that this was just his demeanor and soon after I began to like him a lot. Dr. Lee was his name. First of all, he said, ‘You have Interstitial Lung Disease. Good news is that we caught it in time. The bad news is there is no cure for it. As for now all we can do is to try you out on different medications to see what works for you and try and slow the disease down.’

As we left I thought how did I go from delivering a beautiful healthy baby to now not knowing if I will even get to see him off to preschool. All this within a matter of two months. And, if this wasn’t enough my mother unexpectedly dies!

This can’t be my life right now. So many decisions that we had to make. Should I try the medication, will it work, what are the side effects, what if it doesn’t work the what?

I had always been a person who had faith for others but when it came to me having faith I just couldn’t seem to find it anywhere. At times, I felt like I didn’t have any strength and the very person who had taught me how to depend on God during the hard times was my mother. But now we’re planning her funeral.

My entire world as I knew it felt like it was caving in on me. Yet, I still had to muster up enough strength to be there for my little boy. Many nights my husband held me tightly in his arms because he knew I was afraid, and I needed my mother to comfort me and to tell me that everything was going to be fine but she was gone.

selfie of woman in black shirt with braids
Courtesy of Yolanda Prichett

I questioned God as to why would he take her during this critical time in my life.

During this time, I became very depressed and my bed became my close confidant. The more I stayed in bed the more I wanted to. Not only was I depressed, but I was in constant pain all over. I think the only reason I felt was a reason to get up was because of my baby and my husband.

At this point, my days were mostly spent going to doctor’s appointments, having to take scans, X-rays, bone scans, etc. This was certainly not the life I had ever expected for myself. I had a rare disease that was incurable they could not give me any medications to treat it because there were none and neither is there any for it today. Therefore, I was given medications: such as cancer pills, steroids, pain killers,  injections, etc. just to try and slow down the progression of the disease.

A Tree of Pain

I describe Scleroderma like a tree, meaning there is one root but out of it are many branches, Scleroderma has many attachments. At first, I wasn’t too thrilled about all the disease entails especially after hearing that the sister of the now-deceased actor Bob Saget died from it. I remember thinking with all the money he has, why couldn’t they do something or come up with something to prolong her life? Which caused me more depression because if someone who has the means and the influence couldn’t find a cure then where does this leave me?

My skin was tight it didn’t and it still doesn’t have any elasticity because my body produces too much collagen. I remember a female doctor jokingly said to me that she wished she could have a little of what I have then she wouldn’t have to spend all her money on Botox. I didn’t find this amusing at all because I would rather have wrinkles any day than have a disease that causes me not to wrinkle.

I mentioned the different attachments that comes with Scleroderma. Because it is an autoimmune disease, the body works overtime trying its best to protect me, but it’s actually attacking my healthy cells. As a result, I have developed an irritating cough that has developed into me having COPD, my lungs are scarred for which I have to take medication for my entire life it is not to cure it just to hopefully slow the scarring down.

There is not a day that goes by that I am not in pain. With research, I found that anything that lasts from three months to a year is considered chronic. Well, mine is definitely chronic because I have been in constant pain with arthritis for over fifteen years now.

I wasn’t told that my skin would turn blue and that I would have tiny little hard-calloused skin around my fingers whenever the weather changes. Sure, for the past two winters I have had excruciating pain first on my index finger and this year it was in both thumbs. The pain is almost indescribable, especially for someone who has not had it. I will try and paint a picture for you. ‘It feels like your fingers are coming off.’

I don’t know how many urgent cares and emergency rooms I went to before this one doctor came in and told me I was experiencing Raynaud’s Phenomenon (a part of scleroderma). He explained that this happens when one part of the body is experiencing heat and cold at the same time because there is no blood circulation in my fingers. Thankfully, he put me on blood pressure pills that I have to take before the winter comes. Oh the joy of being me.

In 2012 I was one of five sisters diagnosed with breast cancer. My parents would be devastated to know that all five of their girls are cancer survivors. I like to say we’re conquerors.

I was blessed that they caught mine in time therefore, I only required having a lumpectomy and thirty-two rounds of radiation. Each day my husband would rush home from work to take me to my treatments. I couldn’t be more blessed to have him by my side for every battle I’ve had to fight he’s been there for everyone.

Radiation was hard on my body and now I was twice as tired because radiation drains you. There were times when we finally made it home all I could do was sit in the car for a few minutes just to gather up some strength to get out.

Living With Invisible Illness

I had never heard of ‘invisible illness’ until I happened to come across the page of a young lady who has Multiple Sclerosis. Her post read, ‘Invisible illness is a condition that can’t be easily recognized upon observing a person. However, these conditions can impair normal daily activities while the person looks typical because the symptoms can fluctuate from day to day. People with invisible illnesses may look healthy on the outside but often have terrible health struggles.’ After I read her post, I thanked her for putting into words what I have been trying to say for years.

Since being diagnosed with Scleroderma I have never looked better. I know it’s crazy for me too. Because I am a woman of faith, I know it has been God on my side along with a good support system and a team of good doctors. All who have my best interest at heart!.. If I didn’t tell you I had this disease or if I didn’t tell you I am in excruciating pain you wouldn’t know. I guess it’s because I never wanted sympathy from anyone and for some who I have told all that is wrong with me I can look on their faces that they don’t believe me. So, rather than trying to convince anyone of my pain I don’t. Only those closest to me know how much I have had to suffer while in this journey.

They say what doesn’t kill you only makes you stronger. It has been a long rocky road for me to finally acknowledge that there is some truth to that.

I am learning that being strong doesn’t always mean that you’re always up to fight but even on my bad days I still try not to allow myself feel defeated, it’s not allowing my circumstances control my mindset. Although it has been over 17 years since being diagnosed with Scleroderma, I was so afraid I literally felt that I was going to die or either lose my mind for fear of the unknown. Last year I had two surgeries, one for carpal tunnel, one for my shoulder. Sometimes I think my body has become used to pain but because I have learned what resilience is I refuse to give up. I remember one doctor telling me that most people who have this disease don’t live to be 50. On August 6th, I will be fifty-seven.

And, that little boy is now 23 years old and is my pride and joy! I have done many things that I am amazed by and sometimes I think this could be why people don’t think I am as sick as I really am and it’s because I have learned what it means to keep fighting. I have written a successful cookbook, and a prayer journal and now putting the finishing touches to my life story. This past March 30th, my husband and I celebrated 26 years of marriage. I sometimes wonder how did I get to be so lucky to have someone like you. I have come to realize that my life will never be the same. I will probably always have to be under the care of certain doctors.

I have accepted that I will never have wrinkles on my face and I will always have to take medication for my lungs. Research on the disease has matured me into becoming stronger in my faith as well as how to live and maintain a fruitful life while living with an incurable disease has helped me realize that in any circumstance you are given choices and it’s up to you which choice or choices work best for you.

For me, I choose to live!”

headshot of woman in white shirt
Courtesy of Yolanda Prichett

This story was submitted to Love What Matters by Yolanda Prichett. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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