42 / 52 : “Christmas Lights”

It’s that time of year again. The time to take family Christmas photos, aaaaaaand have a little fun with some Christmas lights. We had a very long day yesterday and our family photo shoot went later into the evening than we had planned. It went pretty well, considering we had a tired “2” and “4” as I like to call them. 😉 We used props, made silly faces, the cat kept trying to sneak in the background – she succeeded a few times, and I was shocked by an exposed, busted Christmas light. Pretty typical. There was success…that is all that matters.

42 / 52 : “Christmas Lights”

Christmas Lights

I love using Christmas lights in pictures. There were more creative things I wanted to do, but we were all tired. So those shots are yet to come. Even if you don’t actually see the lights in the photo and lay them in front of your subject outside of the frame, they give a great ambient glow. Of course, this shot is more of a literal…and ridiculous…way of using them.

2 & 4

This picture is one of my favorites of the evening. As you might notice, this is one of our cat’s successes. She is having a little “Where’s Gryphon?” moment. I hope everyone is having a wonderful Christmas season!

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41 / 52 : “Cold Nose”

It has been a while. I have been hit with what I call the “project monster” (overloading myself with things to do) and have had some wonderful out-of-town family guests. I will finish this Self Portrait Project hopefully sooner, rather than later. Anyway, I took this photo while out in the lovely Christmas Town at Busch Gardens over the weekend. The temperature/”feels like” was in the low 40’s to high 30’s by the end of the night…so it was a bit chilly. Nothing that some FANTASTIC hot chocolate or well placed area heaters could not fix. I love the cold….not the brutally freezing, just the cold. I would rather shiver than sweat any day!

41 / 52 : “Cold Nose”

My wonderful brother and his amazing wife spend a few days with us and the kids. It has become a Thanksgiving tradition. Christmas Town was better this year because they were there. We ate my favorite smoked BBQ, rode some rides, saw some shows and walked among the paths lined with tons of real, lighted Christmas trees. It was a beautiful time with priceless memories.

40 / 52 : “Self Portrait”

I thought I would take a self portrait, self portrait this week. So many photos I end up taking are the ones where I hold the camera out in front of me and take myself and others. They are fun, candid and are often the best pictures of the day…in my opinion.

40 / 52 : “Self Portrait”

There is not much to explain about this one. Simplicity. Good for this chaotic week.

39 / 52 : “Rainy Day”

Growing up in Florida, a hurricane was no foreign thing. Before we moved to Virginia, I never realized how many hurricanes actually made it up the coast, too. Well, hear we are again, at the end of the season with Sandy knocking on our doorstep. The winds will pick up tonight and tomorrow is supposed to be the hardest for our area…work was even cancelled for my husband. Our prayers are with everyone in the path of this gigantic storm.

39 / 52 : “Rainy Day”

I did always love the sound of a a good rainstorm. It is a beautiful, lulling sound that makes me want to curl up with a good book and a blanket. Maybe a little pumpkin spice coffee or hot chocolate, too.

Our backyard looks like a big, wet, Fall blanket. I am just hoping that there will still be some pretty leaves left on the trees after the storm.

38 / 52 : “Portrait”

Well, this was the most difficult photograph for me so far. I actually thought it was going to be the easiest. I wanted to take a sort of “senior portrait” type photo. I didn’t realize how hard it would be to take a official portrait of myself. It is definitely hard to capture a proper angle from a tripod. I took quite a few from all different angles and poses…I discovered I am not a model, for sure. Hahaha. Most of the time my hands looked displaced, my body was awkwardly turn or my hair was flipping in a strange way. I really like being behind the camera when it comes to the posed portraits, instead of in front.

38 / 52 : “Portrait”

I still think it is a little awkward, but it is what it is aaand there it is, me. Me with straight hair.  I use to straighten my hair all the time, this was the first time I have straightened it in years because of my medical issues.  I am glad that I am able to have that option again. After I finished straightening it, my son walked in the room and looked at me. “Mom, you look different. Your hair is all floppy and it doesn’t go back up!” His description of curls. Haha…love it!

37 / 52 : “Aunt”

She is here! My precious little niece. She is absolutely beautiful. My dear sister-in-law and her wonderful husband have begun an amazing family together. So tiny, so sweet, so peaceful. I just love her. This is my first time being an Aunt…I can’t wait to spoil this precious girl!

37 / 52 : “Aunt”

What a blessing she is to our family already. My kids, her only cousins, simply adore her and could not wait to meet her this past weekend. I am so excited for them to grow up together!

An Anniversary…

Not many people know that this is a big day for me. Not many people know that one year ago today I got some news that would change my life as I knew it. I got a phone call one year ago in the evening from my doctor, my heart started racing. He received my biopsy results. The news was what he expected, the news was not what he wanted to deliver – nor what I wanted to hear.

A few of weeks after I gave birth to my daughter I scratched what I thought was a bug bite on my stomach. The wound from the “bite” did not heal. Being a Mom of a brand new baby and a 2 year old, taking care of myself was not high on the priority list. I kind of just blew it off and kept going. Then I noticed my head started itching and I seemed to have a sore on my right temple under my hair. That made me stop and think. Little did I know that this was just the start of a VERY long road. A few spots appeared on my back and I knew I needed to get it checked out because nothing would heal. The wounds would start like a blister, then end up looking like a rash.

I went to one dermatologist, I saw the assistant – she tested for ringworm. It was negative and she gave me some cream and said come back in a month. I did not go back. We found another place that looked promising. Lots of smiles and positive attitudes, but little knowledge and no progress. I went there for 7 months. After biopsies, a patch test, creams, medicines, sprays, and at the end of it all they had no idea what was going on – we went on the search for yet another dermatologist. With lots of prayer we walked in to meet the new guy. PRAISE GOD for a man with experience and answers. All he did was look at me and he guessed the problem. “Let’s do a biopsy to make 100% sure.” I looked at my husband…I am not the best with needles and the like. I thank God for a man who can stand in the gap for my weakness. Biopsy accomplished, now to wait on the results.

“Pemphigus Foliaceus” : “It is an autoimmune skin disorder characterized by the loss of intercellular adhesion of keratinocytes in the upper parts of the epidermis (acantholysis), resulting in the formation of superficial blisters.” (Medscape Reference)

After a doctor tells you words like, “no cure,” “long journey ahead,” and “no more children (because of medication),” it is really hard to make sense of the rest. It is hard to think back through the past couple of years. They have not been easy. It took a year to figure out what was wrong, and it has been a year of trying to control this awful disease with some pretty BITTERsweet medicine.

Pemphigus does not have a cure, but it can be controlled and even sometimes go into remission. It is a pretty rare disease, so not many large case studies have been done. Thankfully my doctor and those at his practice had seen a case or two of people with this disease…and he has been practicing since I was born, if that tells you anything. I am also thankful that I live in this time period, because not too long ago there was no treatment for this condition – which can be fatal if left untreated. The medicine that I had to start on, because for some reason it is the only thing known, at this point, to stop the blistering onslaught, was Prednisone. A pretty heavy dose. If anyone has been on this medicine for a length of time, they know it is some nasty stuff.

The blistering had become so bad that the entire upper part of my back was covered. There were lots of spots on my lower back as well. They also speckled my legs, arms, butt (sorry, T.M.I.), neck, face, and had recently started affecting the skin around my eyes. The disease so terrible on my head that I could not even feel my scalp in most places. It was horrible…truly. Especially not knowing what it was for so long. I can’t tell you how many times I got out of the shower crying because of how painful it was for the water to beat the open wounds of my back, or how much I feared getting an itch – knowing that it was probably another blister forming.

Finally having an answer, even though it was not pleasant, meant at least relief from the disease was coming, but WOW, the side effects from the medicine was almost worse. I started at 60 mg. Just a couple weeks into taking it, POW, side effects started coming. From what we had read about the medicine, people didn’t start seeing major side effects for a while…not me. I could go on and on about the destruction of my body. It started with a red neck and chest, then swollen face, then swollen and distorted body, then the negative changes in my potassium, blood sugars, blood fats, white blood cell count and whatever else was in the vial after vial of blood tests they were running. Then all topped off with the muscle weakness, anxiousness, losing my hair, acne, non-sleeping, hungry, embarrassed self  – I was a pure, frustrated mess. The muscle weakness can be very serious (not to mention that I was on the verge of diabetes towards the end), it caused my doctor to begin dropping my Prednisone dose sooner than he would have liked. About a month after I started on the Prednisone he started me on Cellcept as well, which can take 2 – 12 months to start taking total effect. This is a medicine they give to organ transplant patients, and has much less severe long-term side effects than the Prednisone. It has been tedious trying to adjust the Prednisone and watching to see if the Cellcept could take over. All in all, I feel very blessed for the progress my body has made.

A year after starting on that high dose of Prednisone, I am now down to 2 mg, soon to be 1….soon to be NONE! My body both loved and hated that medicine. It needed it to kick start the control process, but then desperately needed to get off of it to regain healing of everything else. It has been a very long, emotional, physical and mental journey. I am beyond BLESSED to say that I see the Light at the end of this confusing tunnel called Pemphigus. I only have a couple small spots on my back now and one on the side of my face and they are all just taking their time getting smaller, and prayerfully will just go away in the coming weeks. After the rashes went away, I was covered in scars, they are disappearing now as well. I am dealing with the mental and emotional scars, by God’s grace. The rest of the effects of Prednisone are melting away as well. My internal and external self are coming back around. This whole experience has and is the most difficult thing I have ever gone through.

You may wonder why I decided to write a small novel on this topic, instead of keep it private. I just wanted this note to be available for someone to stumble upon, just as my husband and I searched for clues or answers to our many questions about what could be wrong and found others in my same boat. There was comfort in knowing I was not alone. I wanted to be able to give someone a little hope in the midst of struggle. As we went 7 months wondering why a group of doctors could give us no help, we tried to research ourselves. If you feel like you aren’t getting the service or answers you need, find another doctor…please don’t wait 7 months like I did. Besides a good doctor, faith in God has truly has gotten me this far. Faith that even though I do not understand what is happening and why, that He does, and He loves me and is taking care of me, even though it is hard to see through the fog. I have clung to Jesus at the end of my rope…He is carrying me through. Though I may never know why I have contracted this disease, I do know that it is making me stronger. Though I have felt overcome, God has and will make me a victor.

“But thanks be to God! He gives us the victory through our Lord Jesus Christ.” 1 Corinthians 15:57

36 / 52 : “Fair Day”

A day at the fair goes way back for me. Some great memories, some fun times – there is nothing like a day at the state fair! The weather was cool and breezy. The scent of greasy pizza, cotton candy, and farm animals was in the air. The sounds of carnies vying for our attention, mingled with the shrieks and clatter of people on rides. Our kids squealed as they chased each other around the pretty green grass of Meadow Event Park. Growing up, I use to enter the photography competition in the Florida State Fair. It was always fun to go and find out what/if you won for your photos. I thought that a self portrait from this year was appropriate for my project. I took a few pictures that day, but this one was my favorite.

36 / 52 : “Fair Day”

I love that my daughter is munching a bite of pretzel. I love my son’s smile with pizza in his cheek. I love that I can take my kids to the fair now and let them create their own memories.

The first animal that we saw was my all-time favorite! They use to have them at the Florida Fair…it is the baby Zebu. I still totally want one. The cutest cow EVER!

We love the animals. I think my kids could have spent all day feeding goats and petting sheep. They really enjoyed watching the baby chicks hatch from eggs and the ducklings splash and slide in their little man-made pond.

I just realized that I have now been writing this blog for about a year now! Here is the post from last year’s trek to the State Fair…I can’t believe how much my kiddos have grown. 🙂

35 / 52 : “Fall”

My favorite season is here. There really is nothing like the beauty of a cool, Fall day. I have a hard time staying indoors during this time of year. Yesterday morning was spent with a hot cup of coffee on the back porch watching the cool breezes blow my little garden around. The afternoon was spent at Busch Gardens with the family. The leaves have already begun to change – I wait all year for this loveliness. The boots have already been worn, scarves are coming soon! 🙂

35 / 52 : “Fall”

Something I never truly understood, growing up in Florida, is the refreshing feeling of a complete Autumn season. We always had a “Fall” for a few weeks to a month before it turned cool/cold for a little while…and that would be called “Winter.” There are no shedding leaves. No empty trees. I can’t tell you how many times I would be wearing shorts and a t-shirt on Christmas (don’t get me wrong, I love Florida 😉 ). I did not know how much I would LOVE and look forward to seeing the leaves fall from the trees. There is a renewing feeling. The old dies off to prepare for the new.

I have not done an image like this in a long time. It is what I will call a “faux double exposure.” This was “double exposed” on my computer. When I used my film camera I would do double exposure photos all the time – of myself, of other people, of objects, etc… I love the mysterious look that it gives an image. Almost ghostly at times.

I am really praying for a beautiful, restful Fall season. I want to have time to enjoy all the things we love about this time of year. It is the last Fall I have with both of my babies at home, my sweet son starts Kindergarten next year. I can’t believe it. I hope everyone is able to get out and spend some time with family during this amazing season!

34 / 52 : “Park Path”

My family and I discovered a new place to play this past week. It is a park very close to our house. There is a playground, hiking trails, a fishing pier, paddle boats/canoes, and shelters for parties. It was really pretty and peaceful. We look forward to going back, especially the kids. They were not happy when we left that playground. My husband is planning on taking some of his marine science students out on the boats for a field trip. It is nice to get out and play once and a while. Next time we’ll have to explore the paths into the woods.

34 / 52 : “Park Path”