43 / 52 : “New Year”

Happy New Year! I hope it is a happy one. I can’t believe what a different place I am in this year compared to last year. In almost every way. I praise God for bringing me out of all the suffering and confusion of disease. I am so excited to see what this year will bring for me and my family. I don’t do superstitious things or make “new year’s resolutions,” I am always just glad to begin anew and refreshed. I thought for this week I would collage…a new me.

43 / 52 : “New Year”

New Year

I am very proud to say that after 2 babies and some VERY nasty medicine for a year…I am back to my college size. I fit into my “skinny jeans” HELLO! I even bought a pair of pink corduroys….haha. I just need to do a little more shopping so I can stop tying and duct taping my clothes on. 😉 Not complaining…AT ALL. I even got a new haircut.

I hope that everyone has a wonderful, healthy, surprising NEW YEAR! God bless.

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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

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!

22 / 52 : “Tiger’s Eye”

A beautiful friend, a beautiful time, a beautiful gift, now a beautiful memory. I am so blessed to know some very special people and am honored to call them my friends. Some smiles I will never forget, some laughs still ring in my ears, some hugs remain long after they are given, some hearts I keep close to mine.

22 / 52 : “Tiger’s Eye”

 

This will always bring joy to my spirit and light to my eyes as my mind dances back to a happy place…

Wednesday’s Word #25

Ha. Here it is again, Thursday for my mid-week word. Well, it is partly because of the word this week why this post is late. A funny thing about our little family: since my husband and I have been married (7 years in July) we have moved 5 times…that is quite a bit. We just recently celebrated being in one place for one year – a feat for us. We sort of made moving a hobby…haha. Each place we went we shed more things and more things, we became good at moving. We are both clean, minimalists. This last time we shed a ton of excess; necessary for a few reasons. Anyway, we had become so use to changing scenery about once a year it felt weird keeping things as they were around here.

“REARRANGE”

verb: to put (something) into a new order; to put (something) back in its original order after it has been displaced; to fix a new date or time for (something postponed)

synonyms: change, order, readjust, reorganize, reshuffle, revamp, shift, switch

We had been talking about redecorating our living space for a couple months now and I have been slowly gathering new ideas and items. Yesterday we began the process by “rearranging” our furniture. It took us all afternoon, partly because everything takes longer when you have little people running around, jumping off couch cushions and disfiguring your nice, neat book piles. The new configuration of furniture turned out pretty well. Like I said, we just couldn’t leave things the way they were. Both my husband and I were famous for rearranging our furniture in our bedrooms quite often when we were younger.

We will be switching things up. A complete color and style change. So for right now we are “under construction” with empty walls, nails that need to be pulled, decor thrown around, naked windows…it is odd to look at. I am excited about the change. The new color scheme will be completely different than we have ever had in our home. It may take a little bit to get it just right, but we’ll get there. It is always refreshing to rearrange things – a fresh perspective. Maybe that is why we moved so many times? Since we finally feel settled in our current location, we will have to settle with a small furniture rearrange instead of a large life rearrange.

Wednesday’s Word #18

This Winter has been unusually warm, I’ve been okay with that. I have enjoyed the little bit of snow that doesn’t stick around long and the few really cold days haven’t been too bothersome. It is crazy to believe Spring is right around the corner already! This week I have seen the signs of it coming…

“BLOOM”

noun: the flower of a plant; flowers collectively; a flourishing, healthy condition; the time or period of greatest beauty, artistry, etc.; a glow or flush on the cheek indicative of youth and health (dictionary.com)

synonyms: blossom, bud, efflorescence, floret, flower, flourishing (thesaurus.com)

These pretties are right outside my bedroom window and the ground outside is becoming sprinkled with buds, blooms, blossoms and sprouts. Robins are running around. The “bloom” of Spring is so refreshing. I love watching the seasons change, especially from Winter to Spring – everything that looks dead and cold suddenly starts beaming with life and color.

“There is a time for everything, and a season for every activity under heaven.” Ecclesiastes 3:1

Spring feels light, airy, beautiful, clean – a chance to begin again and take on new projects. It’s a time for the flowers to blossom and for us to bloom with the freshness of the season. Be open and renewed this Spring, you never know where it will take you!

Wednesday’s Word #16

This week, this word has changed our lives in a wonderful way. It was a long weekend, which meant hubby was home an extra day and we had some big plans for our house. The best thing about those plans – they actually happened! Hahaha… Amazing. “Spring Cleaning” came early for our household. Since we moved into our apartment, there were a few closets that would get a: “we need to fix this,” as we shove something else inside and wait for it to fall on our heads. The wonderful word this week:

“ORGANIZE”

verb: to form as or into a whole consisting of interdependent or coordinated parts, especially for united action; to systematize (dictionary.com)

synonyms: classify, methodize, regulate, catalogue, harmonize, correlate, construct, establish, adjust (thesaurus.com)

This word is one of my favorites. I love to organize, plan, make lists, etc… I love it when organizing something benefits our family as greatly as this past weekend’s closet redo has done. It took us two parents working together and quickly amid two crazy kids taking things apart and running around – then working like fiends while they napped!

However it happened, it happened, and now we have clean, organized closets. It means the world to me!! Now I can get to everything I need to work on projects for me and crafts for the kids. It is marvelous. I looked around today and realized that we finally have all areas of this place under control. Seriously, a miracle.

Now that things are “organized” there are no excuses for these lingering projects we have, to be left undone. I am excited to get started!

6 / 52 : “My Backyard”

I love where I live. Today during a rather warm winter day, my family and I took a wonderful weekend stroll through one of our favorite places. It is right around the corner and such a peaceful place to enjoy the weather and some quiet thoughts. The history is beautiful, the architecture is stunning, the animals and costumes are heartwarming….ohhh Colonial.

6 / 52 : “My Backyard”

It is also pretty funny to walk around where I had vacationed many years ago as a child. See some of the same sites and take pictures in some of the same spots, now with children of my own. Makes me feel OLD. hahaha

Just for fun, here is a “Then and Now” of my brother and I:

In photo 1 you will notice the amazing headband and our clothing choices, we were a stylin’ duo. In photo 2 you will see what age has done to us…a difference of 17 years…wow.

Just thought I would throw in a a few extra shots of this gorgeous place…I feel a bit rusty at taking creative images, but Colonial speaks for itself.

Governor’s Palace…

Cannon in the field…

My sweet family walking the streets…

Wednesday’s Word #15

So this week I am running on empty. I am sick of my family’s lingering sickness. We are all tired and a bit bored with the routine of life. Last night it hit me, we need a jump start or something…time to change it up and get things put together…time to:

“RENEW”

verb: to begin again, recommence; to make effective for an additional period; to restore or replenish; to make, say or do again; to revive; reestablish; to be restored to a former state

synonyms: restock, re-create, rejuvenate, regenerate, reinstate, renovate, repair (dictionary.com)

Yes, we need all of those words in this household right now. We are at a strange point in life where so much is changing and moving, yet the day to day seems habitual. That does not seem to make much sense, but it does in our world. Personal things need to change, schedules need to be rearranged, activities need to be implemented, projects need to be completed…

It is a bit overwhelming to think of it all at once, and difficult to think of it all individually. Especially when you are exhausted and are constantly chasing after two active children. It is also exceptionally challenging to complete tasks with an almost 18 month old who innocently undoes everything you have just done.

I pray for mercy and grace as we attempt to “rejuvenate” this family in a refreshed direction. I hope it helps all of us move forward on a positive course for this new year…God knows we need it.