48 / 52 : “Whitewash”

I decided to play with some photos in my editing program. I really like the way this one came out. Kind of strange, kind of fun. It is as simple as that.

48 / 52 : “Whitewash”

Whitewash

I am not a quitter, so as long as it takes, I will finish this project! Only 4 left. ūüôā

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.

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

32 / 52 : “Light Spinner”

One morning, after my son had attended a friend’s birthday party, we had a little light show in the dark with one of the party favors. It lasted for over an hour, which is a miracle for kids with short attention spans. It involved spinning, twirling, tossing, shaking, shape-making, and writing with glow sticks. They had a blast! I could not capture their sweet, giggling faces in the dark, but I did capture their artwork – and mine!

32 / 52 : “Light Spinner”

It was a lot of fun experimenting with how much light we allowed in the room, versus how long I left the shutter open. Some of my favorite images were ones where the kids dropped the glow sticks – they left a light trail.

This one reminds me of a bird. It was great sharing this¬†experience¬†with my kiddos. Taking “light” images is something I have been doing for a long time. I especially like using a black light, those always come out pretty amazing.

Here are those precious hands making shapes on the ground. ūüôā

25 / 52 : “Nikon”

Portrait time again. This one is just me and my camera. A peaceful place to be.

I am using the Nikon D80. For a while now I have been a Nikon fan. I am not a very picky person. I am pretty easy to please when it comes to movies, books and the like – I am not very critical nor do I analyze to the smallest detail. I am not passionate about any brand (except when it comes to my peanut butter!) or name of a product. So there is no particular reason why I like my Nikon, I just do.

Peaceful Fish

My doctor’s office has a fish tank, many of them do. I guess they have them to help calm the nerves of incoming patients. I love watching the peaceful fish swim around their small tank of glass and listening to gentle bubbling of the filter. I always wonder what they are thinking and what I look like through their eyes. Do they recognize a friendly face, a sad face, a nervous face, the face of someone bringing their food?

image

Sometimes I wish I was a fish surrounded by the quiet solitude of water. To know what it’s like to not have to come up for air, to float and swim freely suspended. Just a few thoughts on fish…someone is calling my name.

21 / 52 : “Scars”

This week I have been thinking and noticing all the markings on my skin. Because of recent health issues, I have a lot more marks than I once did. All these markings have a story; they make up who I am. Some I’ve had ever since I was little, some are more recent. Some are emotionally deep, some I question where they came from. Some I am grateful for, some I wish would just disappear.

21 / 52 : “Scars”

These scars on my knee are from what I call a miracle. One day I was sitting at my desk and my one year old daughter walked up to where the dinner trays were sitting on the outside of my desk and began pulling them. Before I could stop her they started falling on her. Somehow I was out from under my desk, she was next to me and the trays and stand were on top of me…and I was in pain. My little, sweet baby got up and gave me a kiss, then went about her business. All I could do was thank God that it was me and not her under the trays. I bashed up my feet, knee and hand – I was bleeding and hurting. I still cannot figure out how I got to where I did. A miracle.

On a side note…knees are weird. They are very awkward looking in a photo. I have to admit, I have never really attempted knee photography before – definitely not my favorite subject. I have learned this week that knees are not photogenic…or maybe it’s just my knees.

Wednesday’s Word #27

Haha…ok. I about to give up on the whole Wednesday thing and just make it a Thursday thing. It sure seems like I find it hard to write on a Wednesday, maybe it is no accident. Some funny happenstances took place this week and it got me thinking about my word for this week.

“COINCIDENCE”

noun: a striking occurrence of two or more events at one time apparently by mere chance; the condition or fact of coinciding; an instance of this (dictionary.com)

synonyms: chance, fluke, stroke of luck, fate, accident (thesaurus.com)

I was always taught that there are no such thing as coincidences, that everything happens for a reason. I do believe that. I have a hard time believing that things just happen. That on a random night, a random restaurant, running into someone you know from another town, another state, who happens to be eating at the same time as you – does that just happen? Pulling into the multi-lane entrance of Busch Gardens and pulling right next to someone you know who happens to be going to the park at the same time as you on the same day in the lane right next to you so you would be able to see them – does that just happen? Well both of those occurrences happened to me this week…

Do things like that just happen? It seems like they do. What would be the great meaning behind running into someone you know while out to eat and saying “hi, how are you?” Or running into a friend and joining up in a theme park for a short while? I guess you never know the implications of even running into someone you don’t know on the street, or what a friendly smile might do to someones day…or an angry expression. I do believe things happen for a reason.

I think about that sometimes as I am going about my day…if I had been 30 seconds slower at walking up to the door that guy would not have been there to open it for me; or if my son hadn’t stopped to put that extra rock in his shoe, that sweet, older woman would not have been there to pick up his shoe after it fell off and hand him a bag for his rocks instead of his shoe….

Weird “coincidences” happen all the time if you think about it…take advantage of them, because you just never know what they could mean to someone else – or to you.

Wednesday’s Word #26

This morning I was thinking about all the things I want to do. Every once and a while I get hit with this inspiration urge to be creative or get a lot accomplished. Most of the time that burst of inspirational energy gets interrupted or tired or distracted. Most of the time I keep telling myself why things can’t get done, why I just can’t do anything creative right now – I am too busy.

“EXCUSE”

noun: an explanation offered as a reason for being excused; a plea offered in extenuation of a fault or for release from an obligation, promise, etc; a pretext or subterfuge (dictionary.com)

I do make excuses for myself and how I spend my time. Being a busy Mom, I like to remind myself of all the things I could do if I had more time to myself. Some of it is true, but most of it is just excuses. I have always believed if there is something that you really want, you will make it happen (for the most part).

Hopefully moving forward…now that I realize what I have been doing to myself, I will stop excusing my time choices and begin to turn things around. I will stop saying: I wish I could. I will start saying: I can and I will now. I need to clear my head, make a plan and make it happen.