Chronic Illness doesn't have a LOOK

I was diagnosed with Systemic Scleroderma in 2001.  Over the years I’ve adapted to a lifestyle and mentality where I know I am stronger than this.  When I tell people, I have Scleroderma the first reaction I get is, “what’s that?” and the second is 

“you don’t look sick.”

 

From Mayo Clinic website:

There are many different types of scleroderma. In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin, such as blood vessels, internal organs and the digestive tract (systemic scleroderma). Signs and symptoms vary, depending on which type of scleroderma you have.

 

I have Limited cutaneous systemic scleroderma aka C.R.E.S.T. Syndrome, my goodness right?  There is no cure and I have been living with this for over 20 years.  My daily symptoms include Calcinosis.  Calcinosis makes it very difficult for me to do fine motor skills.  I also try to avoid tasks that involve possible injury to my fingertips.  Any type of blunt force that happens to my finger creates a finger ulcer (digital ischemia).  The injury creates a small pocket of puss that develops under the skin accompanied by painful pulsations resonating from fingertip to elbow.  This is the beginning of necroses in my finger.  I also have Raynaud’s Syndrome where my hands and feet do not get enough blood flow to the tips of my digitals.  Have you seen my hands?  They’re not pretty, that’s two decades of finger ulcers you’re looking at.  I’ve heard so many comments about my hands that I’m at the point where it doesn’t bother me AS MUCH as it used to.   I underwent digital sympathectomy in both hands.  The surgeon told me that this will work but eventually the tissue will build up again and if I wanted to I can undergo the procedure again.  It worked for two years and now I get the finger ulcers regularly. 

My fingers are the only visible symptoms of how Scleroderma kicks my ass.  The other symptoms are internally.  I also live with Esophageal Dysfunction; long story short I had an esophageal manometry test done (I wish this on no one) and found out the muscles in my esophagus do not squeeze and push my food down.  But Rose you’re such a voracious eater? Thank you I am, I am also proud to tell you that while you’re eating with me I’ve learned to chew my food a billion times so it liquefies down my throat and I strategically have a beverage nearby so by the means of gravity my food goes down into my stomach.  Ta-da!  That’s not all folks, on top of the muscles deteriorating my esophagus I have G.E.R.D.  Stomach acid rises up and in my case the acid travels to my lungs.

Since my esophagus lacks motility, I’ve leveled up to Interstitial Lung Disease more specifically Bronchiectasis and Asthma!  My lungs look like I’ve had pneumonia for many years, but I’ve never had that, not even walking pneumonia.  When I look at CT scans of my lungs my strength is usually gone and I’m in tears. I’m lucky that I’m not at the point where I need an oxygen machine, but my Pulmonologist has had the lung transplant talk with me.  I have yearly Pulmonary Function tests and my average peak flow level is 300.  I take inhalers regularly.  I honestly have forgotten my inhalers at times, but I’ve learned to use meditation and it works.  I strongly support meditation and mental strength for people with chronic illness. 

 

This is getting long, Sclerodactyly goes back to my amazing finger problems. The last letter in the C.R.E.S.T. acronym is Telangiectasia.  Telangiectasia is a symptom that I do not experience yet.  Along with Scleroderma, I have year-round environmental and food allergies, migraines, and postherpetic neuralgia from having Shingles TWICE.  Those symptoms are like the cherries on top of my coffee ice cream mixed with Oreos and brownies sundae. 

 

Speaking of food a few years ago, I was in line at Chipotle and this guy noticed my Scleroderma Awareness ribbon and pin.  I shared this long ass story with him as we waited for our burrito bowls to be assembled.  By the time, I reached the cashier he told me he paid for my food and thanked me for educating him on Scleroderma.  Now after reading my story I encourage you to buy me food or gift cards to Thai, Korean, Mexican or Italian restaurants, and why not Cold Stone Creamery?  I can provide you with my address just DM me.  I honestly want to thank you for taking time out of your life to hear a snippet of my journey. 

It's been awhile since I've been on this blog and if you continue reading; I'm still in love with my best friend Terry and we have an eight year old daughter and a nine year old Olde English Bulldogge.  That ten year journey to parenthood I will share another time.

Our Angel Taitum Makaila Brown

Preface
The beauty of life is while we cannot undo what is done, we can see it, understand it, learn from it and change. So that every new moment is not spent in regret, guilt, fear or anger but in wisdom and understanding. Sometimes you have to share the darkest moments that you were forced to experience to find people just like you. Sometimes you share and people have pity on you and that’s not what you are looking for. Sometimes you share and all people hear is the pain. But all the time, you just want to know that you are not alone.

As most of you know I have an autoimmune disease called Scleroderma. (www.firstgiving.com/rosemarie) When Terry and I found out we were pregnant we received support from my OB doctor and a Perinatologist (maternal-fetal specialist). My pregnancy was considered high risk so I visited the doctor’s office every two weeks. We went through so many emotions with our Baby Girl from blood work, glucose testing to genetic testing where the tests were initially abnormal then after a second testing result concluded to be normal or negative. I was definitely a happy pregnant lady even while I was waiting for test results. Even though we experienced a great loss, I feel at peace that our angel Taitum Makaila Brown is with God and I am truly grateful to have loved her so much and be her Mommy.

Pregnancy
After our first at home pregnancy test I made a daily schedule to wake up an hour earlier than my regular time so I would have enough time to eat a nutritional breakfast and plan out all my meals throughout the day. If you spent a day with me you knew that there was a 99% chance I had string cheese, hummus and fruit in my lunch box or purse. It was really hard for me to gain weight but I didn’t want to eat or gain weight the unhealthy way so I was gaining weight by drinking a lot of whole milk, eating high fatty foods like avocado and nuts. Don’t get me wrong my love for meat didn’t reduce I ate burgers and steak but in moderation. I think the food I craved the most was Favela’s Carne Asada Nachos, Sukhothai’s Seafood salad, Evelyn’s Meat Lover’s Pizza and pretty much anything my Mom cooked and if my Mom wasn’t around I ate Filipino food at Sisig. We loved to eat. At about four months, I started to feel her swish inside me. Her little butterfly movements would wake me up and I no longer needed my alarm clock. Baby Bacon (her granddad nicknamed Her that because we love Taitum just as much as bacon, it’s that serious) knew it was almost breakfast time. I know when I ate she didn’t receive the nutrients until hours later but just like her Mama this girl knew food was an essential part of happiness.

My Baby Girl and I were in sync; I’m mildly OCD when it comes to my daily routine. I had a feeling Baby Girl’s eating habits was not the only behavior she got from me. She was on a schedule just like her Mama. I felt her most when she woke me up in the morning and about 6 pm when I would get off work and immediately eat dinner. I spoke to her all day long and at four months my baby bump was not that noticeable but I was rubbing my tummy like I was eight months big. During every shower I sang, “You are my Sunshine” and on my way to work she listened to “Just the Way You Are” by Bruno Mars. When Terry was not working night shifts he would read her stories before we went to bed. He was such a good storyteller too. He described the pictures on the page and changed his voice on different characters (such a wonderful daddy). After stories, I would get my iPod turn the Wi-Fi off and place it on my tummy so she could listen to love jams from when her Mama was growing up. Every day was different but I made sure these daily activities were part of our agenda.

I’m one of those people who swear by music. Music comforts me and I am at peace whether it’s rock or country I cannot live without it. I started singing, “You are my Sunshine” to Baby Bacon once I found out I was pregnant because my Mom always sang that song to my brother and I. When I was about two months pregnant, I dreamt of my Baby Girl sleeping in my arms and I was admiring her precious face and she quietly woke up and opened her eyes. The mesmerizing part of the dream was when she opened her eyes. She had long thick eyelashes like her Daddy. She opened her eyes, yawned and blinked. The dream was simple yet the most beautiful thing I have ever dreamt of. I’ve heard the song, “Just the Way You Are” before but the next day when I heard Bruno Mars say “Oh her eyes, her eyes. Make the stars look like they’re not shining.” I knew that described my Baby Girl. I began to play that song for her on my commute to work and a few weeks later when the song was on I always felt her moving.

A little before five months, I provided blood work for the second genetic testing. A few days later a Geneticist called to tell me that there was a jump from my first genetic testing for Down’s syndrome (two months ago the results were 1/160) the results now were 1/16. Also, the risk of Her of having spina bifida increased. I received the phone call at work and I remembered tears falling down my face and I held my tummy and told my Baby Girl you be strong just like Mommy because sometimes doctors are wrong, they tell Mommy she’s sick all the time but she doesn’t believe them. I left work early and Terry was home and we discussed the options the Geneticist explained to me. The next day I called to make an appointment for an amniocentesis and a 4D sonogram.

I knew our baby girl was a smart cookie but at our appointment with the Geneticist I knew she was a genius. Two days before the appointment Terry and I spoke to Baby Bacon and told her that a doctor was going to stick a needle in her home and she had to make sure she didn’t move so she doesn’t get scratched. Before the amnio, we spent an hour viewing her in a 4D sonogram. She waved high five at us, we saw her sucking her thumb, her butt was on the screen and her foot was in the way. Like all of the other times we saw her in a sonogram she was constantly moving. We saw that her spine was completely developed and she did not have spina bifida. The next testing was the amniocentesis and we had five minutes before the doctor performed the test and in that five minutes Terry spoke to Baby Bacon and said, “Okay, Baby Girl stay still now okay, we want you safe.” The Sonographer held the transducer so the Perinatologist could see which area would be safe to take a sample of amniotic fluid. The ten seconds that needle was in my stomach Terry and I could see our Baby Girl who was dancing all around earlier stay perfectly still during the procedure. When the needle was removed the transducer stayed in place so we could see Her heartbeat and we saw her move. She wiggled her arms and she moved right when the needle was gone. She’s such a good listener. Afterwards, we treated her to some Chicago style pizza at the infamous Zachary’s. Mama had her favorite pepperoni, mushrooms with anchovies. A week later, the Geneticist called and told us that our daughter’s chromosomes were perfect and she did not have a genetic disorder.


She was loved so much. Her Daddy interacted with her as much as I did. Every day, he left to work he gave her a kiss, a rub and talked to her. He never really felt her move until Christmas morning. TMB and I were lying in bed and he was holding my tummy and he felt her kick for the first time. She kicked really hard too. We laughed and said that was his first Christmas gift from his daughter. Her MamuBear (my Mamabear) always spoke to her and rubbed her too. MamaBear always loved holding my stomach just so she could feel Baby Bacon move around. The holidays came and we had lots of visitors at the Brown’s residence. Baby Bacon got to hear so many voices that have traveled from SoCal, NorCal and even from Washington State. Even at my Preschool story time, my kids were so excited for her to come out. One of my kids insisted that she was going to grow up and be a Transformer and she was going to look like Bumblebee because girls like yellow. She was only five months and she was able to hear and feel all the love around her every day.


We were told that I would have to deliver earlier than her due date of April 18th but we never expected anything like this…
On Monday, January 24th my parents accompanied me to a routine doctor’s appointment because TMB had a special schedule at work where it would be difficult for him to come with me. I was 28 weeks or 7 months Baby Bacon was growing inside me…. It is still painful to relive the moment. The only thing I remember is hearing my mom yell, “Nooo, not my baby” while I watched the doctor try different adjustments on the machine because he could not find Taitum’s heartbeat. I told him I heard her heartbeat last week at my Pulmonologist appointment. He looks and looks and after about a minute he repeats something I wish no ever hears, “I’m so sorry, your baby has passed away, she has no heartbeat.” At that moment I felt being in that doctor’s office was surreal and I was in denial. I was numb, there are no tears falling down my face until I sit up and look at the monitor. The little heart that I used to see pump and her hand that would always wave at me stayed still. Nothing…my Baby Girl the little life that I was growing inside me had stopped…

I was induced into labor later that evening, the thought of having to deliver a baby that was stillborn tore my heart. All of the dreams that I had for Baby Bacon had to stay as dreams. I spoke to God a lot that day, I mainly asked him why? I thought living with Scleroderma was already hard but now I have to live through losing my first child. “What doesn’t kill you only makes you stronger.” How much stronger do I have to be? I was so angry, so hurt and so empty. Throughout this heartache my husband reminded me that we can’t waste time being angry or put blame on what happened. This is why I married this man; I started to focus on the labor and thought about the future hours because soon we would see Her face. Soon I would be able to kiss her little cheeks and although she would not be alive to feel the love this was time to show her more LOVE than she ever knew. My parents and TMB’s parents and brother stayed with us at the hospital. We are really blessed to have such a close family who is supportive and love us unconditionally. I tell TMB all the time I love our families.

We stayed overnight in the hospital and one of the nurses asked if we had picked a name for our baby. TMB and I have talked about it before but if you know my husband he always joked about names like Bertha and Penelope. I asked if he liked Angel because she would be an angel or we could name her Baby Bacon on the birth certificate because that’s what we’ve been calling her. Then I reminded him about how I wanted Her to have the same initials as him so I can call her “Junior.” He agreed he liked the idea and suggested we go with the name I mentioned to him a while ago. I knew her middle name would be Makaila because her Daddy’s middle name is Michael meaning “son of God”. There were a handful of names that began with “T” that I loved but I really loved the meaning of Taitum, which means “blessing of joy”. So at 12:03pm on Tuesday, January 25th Taitum Makaila Brown was delivered and although her time with us was short she truly was a blessing of joy from God.

After the delivery the doctors had a clue that the reason Taitum was not able to survive was the lack of nutrients and oxygen from the placenta. The placenta that I delivered was very small for seven months and showed calcification. A few weeks the Pathologist confirmed that it was the calcified placenta. The Scleroderma for some reason had antibodies that were affecting the placenta but we didn’t know how fast or how much it would affect the pregnancy. We were told Taitum passed a few days before the doctor visit. We learned from the autopsy if we were to deliver her earlier she would have not survived because her lungs and liver were underdeveloped. Her lungs and liver was the size of a baby who is four months and she lived to seven months. We are definitely blessed to have felt her move, kick and see her several times wave to us and show us she knew how to suck her thumb. She definitely was strong like her Mommy.

A little over a month has passed since she was delivered and I still have my moments. I have been to group therapy counseling and will attend one and one counseling for grief but I feel what has really helped me cope with my feelings is spending time with my Mom, Dad, Brother, Husband, in-laws and family and close friends. Those moments are hands down the best therapy. They don’t help me forget Taitum they remind me that I can still smile, laugh and live life while she’s in heaven waiting for me. It truly is a special feeling to have loved ones acknowledge our daughter. I don’t think I will ever understand why babies die. They never had the chance to explore the world. I imagine it’s a complex way of showing us how unexpected life can be. I believe in God and I believe he has a path for my husband and I. The path has definitely made us stop in tracks but it is up to TMB and I to get going again. There are no plans for a baby anytime soon. We want to make sure we can give 110% love to our future child. We are very optimistic and have a strong team of doctors that know what to look for in a future pregnancy and they all agree that it is possible with medication and closely monitoring with advanced sonograms it is possible for me to have a healthy baby. Every placenta and baby is different so please keep positive thoughts. This experience has been extremely heartbreaking but Terry and I honestly feel that we will be okay. Thank you for reading. 


Mi Casa es tha BR (Brown's Residence)

So it's true after patiently waiting five loooong MONTHS on a house TMB and I have a home together!!! Yay! Well, to me "home" is where your mom lives and anywhere else is "tha crib" but i'm just sayin'. Anyhow, the previous owner was a single dad with 3 boys who were all in high school and all played football and the dad is their coach on the football team. JOY! eh?! So, back to the condition of the house, considering who lived there they took pretty good care of it. It was built in 2005 and the only complaint I have is the carpet...(trying to find words from Andrew Zimmern's lingo)..."gamey, foul, rubbery" so TMB and I are getting new carpet put in before we officially move in. We're so excited, one of the first purchases I made was a welcome mat and a money tree! Now that I remembered I have a blog, I can type out more than 140 characters (sorry twitter)to share my with you. I will be posting BR pics and our wedding stuff too!!! Here's a symbol of me doing my infamous cabbage patch dance (@) LOL Okay world...had my bowl of cereal with 2% and now it's off to make a deposit and rest.

Let the Rain Fall Down...

It's so beautiful outside, the rain is feeding all the plants, grass and trees. The hills off of 80 are a gorgeous green. I love the rain so like the songs states, "Let the Rain Fall Down." As the rain fell I came across something to vent about. I was driving on I-80 West going towards Vallejo for my routine Pulmonary Function Test and guess what dampers my day. A really bad car accident =( Some people are just freakin stupid, why on earth would you drive reckless or even speed!!! Aghhh, you know damn fucken well the roads will respond differently when it rains. I mean the other people in cars have families and have a purpose to why they're on the freeway so who gave you the narcissistic crown to run the freakin road! Assholes!! I'm not trying to be belligerent or be a "T.E." aka Traffic Enforcer, I just wish people will be careful. (scene)
On a more cheerful and less cynical note:
This weekend is going to be fun! My niece is going to have a Hannah Montana birthday bash!! How fun is that right? Mix it all together and you'll get the best of both worlds! LOL I'm so excited we get to jump in bouncy houses! Well..I can't bounce too long because of my lungs but still it'll be fun. The cherry on top of the weekend is that my God daughter from Washington will be visiting for Easter! Yay!

Special K

Preface: I was raised Catholic, now I'm not a religious person but I practice any religion that makes myself a better person. So I decided to participate in Lent and I gave up something that I consider a sacrifice but improves my lifestyle. I'm a FOODIE, so being on a diet or giving up something that is definitely a challenge. Usually when I practice Lent I give up soda, chocolate, profanity but this time I gave up BEEF. Yes, no Nachos con Carne Asada, burgers, Pad-sew with beef, Spaghetti and STEAK!! Bare with me, it has been a challenge but it's nearing Easter usually when everyone rejoices and returns to their norms. I, on the other hand will try to continue this practice, I believe the no beef diet has improved my skin, my attitude and life in general. Still, my mouth salivates as I watch others eat steak but honestly I can really do without. On that note:

Hi my name is Rosemarie, and I'm going to try to do the Special K challenge, eat no or less beef and exercise as much as my body can handle. Have a beautiful Monday!

I'm a Little Teapot

I've been feeling quite lethargic lately. I have a new digital ulcer and it's overwhelmingly draining my energy. I was ulcer free for two weeks this year and it came back. I know how I got it too...I was shelving a new book and this book weighed almost a pound and I must of lost my grip and it landed spine part on my right ring finger. I wanted to scream but I bit my tongue and let my hair cover my face. I was in excruciating pain, tears fell from eyes...it hurt so mutha fucken bad.

Teachings on Love

If there is one book you read in your life, I truly recommend reading Teachings on Love by Thich Nhat Hanh. I was raised Catholic and I respect all religions and beliefs. I know God loves me as long as I have understanding, compassion, joy and love and I share it with others. I live with Systemic Scleroderma and everyday that I'm alive and breathing it is a blessing. I wanted to share this passage with you,

"One compassionate word, action, or thought, can reduce another person's suffering and bring him joy. One word can give comfort and confidence, and destroy doubt. help someone avoid a mistake, reconcile a conflict,or open a door to liberation. One action can save a person's life or help him take advantage of a rare opportunity. One thought can do the same, because thoughts always lead to words and actions. With compassion in our heart, every thought, word, and deed can bring a miracle.

When I was a novice, I could not understand why, if the world is filled with suffering, the Buddha has such a beautiful smile. Why isn't the disturbed by all the suffering? Later I discovered that the Buddha has enough understanding, calm and strength; that is why the suffering does not overwhelm him He is able to smile to suffering because he knows how to take care of it and to help transform it We need to be aware of the suffering, but retain our clarity, calmness, and strength so we can help transform the situation. The ocean of tears cannot drown us if karuna is there. That is why the Buddha's smile is possible."

I hope you read this book, it's seriously bibliotherapy Thank you Thay!
Happy Friday All!

Ate Kata & Kuya Mike Renew

The week's Nitty Gritty

1. What kept me sane: Twitter
2. Sunday's highlight: Saw my Gurls and ate pho!
3. Yesterday's pinnacle: Kristafa got accepted to Western University of Health Science College of Optometry
4. Today...2,695 ft $299,000 built 2005
5. Tomorrow...Ate Kata's wedding and I can't wear black =(
6. Weekend jitters...I work all weekend
7. Overall rank of the week: Well Charlie,(fictional name I usually same when I'm talking to myself) I give this week an 8 out of 10 probably because other people's happiness outrank my own like my lil brotha. He's soo excited that I'm super duper excited. The only reason it's not a 10 is because TMB is still workin his turn around schedule on graveyard shifts.

Sidenote:
Be noisy with me and join Twiiter!
@MzRoseGuRL

Ooops I did it again...

My second attempt to bloggin, I think I can, I think I can...I CAN! Previous blogs were on
MzRoseGuRL

so here it goes...have a beautiful and peaceful day!