Biopsy

Tomorrow I have a skin biopsy scheduled for 8:40am. I'm terrified. I know scleroderma isn't a death sentence, but I also know that my quality of life will not be the same if I receive this diagnosis. I've recently had skin changes on my face, hands, and feet. My hope is that it's related to lupus, but these aren't typical lupus symptoms. Tonight, as the girls danced the tears started flowing. I have a hard time accepting what my life may be and imagining my own mortality. At dinner, I cried again, and right now I continue to do the same. Tomorrow we have a big event at one of my stores. So, after my appointment, I'll put on a strong face and smile as usual.

Scleroderma

Today my hands are swollen and my skin is tight. The tips of my fingers itch, and I wish I could rip my nails off and scratch underneath. Other than that, I feel pretty good. Much of my spare time is spent researching. As difficult as it was to accept the lupus diagnosis, I have accepted it. If scleroderma is added to the list, I will have a new diagnosis of mixed connective tissue disease. That scares me. I have so many fears. My doctor was very upset and reluctant to diagnose me because I'm so young. It took her being 100% confident that I had lupus before she would make the diagnosis. We would always talk about it being a possibility during the appointments, and left it at that. Both diseases can be life threatening. My kidneys, lungs, heart, and other organs can be affected. Or, I can be treated with immunosuppressants and hopefully stop the body from attacking itself. I am currently taking an anti-malarial which we hope will reduce my number of flares and keep me in "remission" without having to deal with the issues associated with the immunosuppressants.

Go Gators, Chomp, Chomp, Chomp

Aubrey had her first college football experience Saturday. Keith decided Friday night that he would like Aubrey to have his second ticket to the Florida LSU game. That night, after celebrating my mother-in-laws birthday, Aubrey and I went shopping for Gator gear. We purchased a shirt, then went to Michael's so I could purchase supplies to make her hair bow. The next morning she woke up excited to go to the game. She ate breakfast, showered, then got ready for the big day. Once she was dressed, the other girls and I left to take Daisy for a walk. Keith and Aubrey passed us on their way out, and she was excited about her day with dad. I spoke to Keith as they arrived in Gainesville. They had stopped at chick-fil-a in Ocala for lunch, and they were near the stadium. Aubrey enjoyed the game after the second quarter and has decided she will start her college career at USF and finish a Gator!

Nearly Two Years Later...

It's hard to believe my last post was on November 17,2010. Chloe was just five months old, and now she's a beautiful, active two-year old. She loves her big sister's and is a joy to be with. Bailey has developed so much over the past few years. Her speech is becoming more clear, she is beautiful, and she loves her new dance class(with typical peers)! Aubrey amazes me daily. She is a gorgeous little girl that absorbs everything she is taught. I am excited to see what her future will bring. It's hard to believe how lucky I am to have such an amazing husband and children.

In my last post I discussed my illness and concerns. The doctors were leaning toward something autoimmune, but a diagnosis was difficult. We spent the last weekend in April with my cousin and her family at Legoland. We had a great time, but a few days later my arms were covered in a rash, and my face also had a rash across the bridge of my nose and on my cheeks. That day in the sun at Legoland caused these beautiful rashes. I called my rheumatologist and I was quickly seen. When she entered the exam room on May 3rd she inspected my rash and immediately said classic lupus. So my diagnosis was changed to systemic lupus erythematosus.

That day I walked to my car in tears. I had known for months I would be diagnosed with lupus, but hearing the diagnosis being confirmed by my doctor made it real. I told my family and two friends, and other than a short post on Facebook during lupus awareness month, I've remained quiet. Sometimes I want to tell people, because I fear they are looking at me thinking I'm lazy (which I probably am), but I also don't want people to feel sorry for me. I don't feel sorry for myself. At least I don't feel sick all the time.

Since being diagnosed five months ago I've only had a few flares. I've managed them with prednisone, and have done fairly well, until recently. The past two weeks have been a challenge. It started with a headache and has since moved to my right hand and elbow, my left foot, shoulders, and my back. Honestly, I think I could fall asleep at any time. The fatigue is horrible. I saw my hematologist this week and my iron and iron saturation levels are rapidly dropping. She is repeating labs in three months and may decide to start monthly infusions again. Then, I saw my rheumatologist again this week and my scleroderma antibodies were at 49 and normal range is 0-20. Since that appointment I have looked at my hands every five minutes to check for skin tightening. She will also repeat those labs in 3 months before ordering more tests and determining if a diagnosis should be made. Let's pray that was a fluke! Last night I started plaquenil with the hope of preventing future flares.

When I saw my doctor this week, she asked me how I feel and said to be honest. So, I told her I feel horrible. I told her about my aches, pains, and fatigue, and then I said but... I can't let this stop me. I don't have time to feel sorry for myself and I can't stop doing what I do. If I stop pushing myself to continue moving forward I will sit at home and only get worse. She laughed and then told me that it amazes her how her really sick patients say the same thing, but her patients with minor problems go to her office whining and crying over minor issues. I don't consider myself to be in that really sick category. My hematologist is at the cancer center, and as depressing as you would think it is,the people in the chemo room are smiling, laughing, and enjoying life. Compared to those patients, my issues are minor, so who am I to sit and feel sorry for myself.

So, I will end this by asking that you not comment if you are going to say you are so sorry, or that you feel bad for me. Please, don't feel sorry for me. I have a beautiful life.

3am

Well it's 3am. For some reason I continue getting roommates with issues. Last night I had a snorer, and tonight I have someone who requires the door to be open and someone has to sit with her. Thankfully, I slept all day.

I was admitted to the hospital yesterday because of a blood clot. I was put on Heparin and thankfully this was discovered before it travelled to my lungs.

Since the birth of Chloe I have been quite sick. Total exhaustion and just not feeling well. My hemoglobin dropped very low and I was admitted 2 months ago for a few days to receive IV meds. Since my release I have been seeing a hematologist who gives me IV venofer weekly. The clinic felt I would benefit from having a PICC line and it was inserted on Thursday. By Friday I was already showing signs of a clot, and I finally went to the doctor yesterday. This is my 3rd clot in 4 months, but my first deep vein.

When the previous clot was discovered they did an ultrasound and found that I have a large thyroid nodule. They did a biopsy which came back inconclusive. So, as long as I continue to recover well it will be removed on Thursday. They will check the nodule immediately and if it is malignant they will remove my entire thyroid.

The doctors suspect I may have an autoimmune disorderb which caused these issues to suddenly appear. I see a rheumotologist next week to confirm or deny those suspicions.

I don't feel as bad as I may sound. With a little patience it will all get better.

Tricia

Chloe

It's hard to believe Chloe is already 4 months old. Having three little ones has been a challenge, but well worth it. Aubrey and Bailey love having Chloe in the house, and have adjusted well to the changes. Chloe loves her swing, and loves eating. Her doctor actually told us to cut back on how much she eats. This is such a change from when we had Bailey. It's difficult to know when enough is enough, especially when she wants to continue eating. She is now on solids and doing very well. She's had rice cereal, bananas, and sweet potatoes. Tomorrow she will try carrots or green beans.

Chloe looks so much like Keith. It's funny how different each of our children are. Bailey and I look alike, and Aubrey is a combination the two of us. Chloe spends most of her days at my parent's or Keith's moms house. She loves to smile and laugh, but she does not like being out of the house. She screams when we go to restaurants, parties, or shopping.

Bailey

Bailey is doing very well. She is now 3 years old. She is walking very well, trying to talk, and is almost ready to start potty training. Bailey has been very healthy for the past year, which is good news for us. I think her last hospital stay was around December of last year.

Bailey is such a tough little girl. It is nothing for her to walk into a wall, fall down, or get a bad infection and keep going like nothing has happened. She can be very demanding when food is involved. But, is happy most of the time.

Bailey has started her 3rd year at The Achievement Academy. She moved up to another class and is doing very well. It was a difficult transition for us because we loved her past teacher and para's, but we had to understand that this is what was best. Bailey interacts well with her classmates, works hard to achieve her goals, and is exhausted when she gets home! We're really going to miss everyone when she turns 6 and graduates!

It's hard to believe where she started. First, we thought we were having a healthy baby. Then, after delivery we were told she has Down syndrome. Then, the following day we were told she had a heart defect. She came home, went into heart failure, had open heart surgery, had a feeding tube, had two eye surgeries, hospitalized many times for feeding issues, MRSA, and pneumonia. Now, she's like any other child. I love her so much!

Bailey has adjusted well to having a little sister. She only gets jealous when papa is holding Chloe. I can't wait to see my three little girls grow up together. Last year her teachers taught her how to hold a baby doll and be gentle. I owe them so much! That was a wonderful idea, and thanks to them Bailey hasn't thrown Chloe across the room.