Falling Behind

This blog is about living with chronic illness. Illness which has reared up ugly in the last week or so. I struggled to maintain both my blogs, as well as edit my daughter's daily blog post. But, as you can see, I fell behind in the A-Z Challenge on this blog.

My intention is to catch up. I do have a story to tell. And I love the challenge and all the great people I'm meeting. So, by Monday I hope to be back on track, caught up with all my missed letters.

In the meantime, check out:
Coffee in the Garden (my other blog)
Growing up Victoria (my daughter's blog)
Mothering God's Children (my sister's blog)

Great Physician

Tomorrow we celebrate Christ risen. This Great Physician conquered even death. How can I not trust Him to take care of my life?

Happy Easter! He is Risen!

Forgiveness

Today is Good Friday. I'm not writing a post about myself.

F is for Forgiveness. And I'll direct you to my other blog, Coffee in the Garden, for my thoughts on that.

Have a beautiful day!

The E.N.T

One of the issues I deal with constantly is doctors not being able to tell me what's wrong. I went to my PCP because of horrible ear pain I was having when I was in the cold or wind, and sometimes just randomly. They told me there was pressure behind my ear, but no infection. Of course, it's always, "come back and see us if you are still in pain in a couple of weeks."  After a few weeks, I decided to go see an Otolaryngologis, a.k.a an Ear, Nose, and Throat doctor. Having been to sooo many doctors, I get a feeling almost right away about whether I'll like anew doctor. I liked this one. Yay! A little victory.

Alas, after a thorough exam, he could not find anything wrong that could be causing my ear pain. There is a possibility that my TMJ is irritating the nerves near the ear, or that it's part of my neuropathic pain. Either way, I walked out of there with no real answers, and advice to talk to my dentist and neurologist. Every unknown requires at least one, usually multiple, trips to other doctors. And I get tired of that.

But God knows what's wrong with my ear. He knows what's wrong with my foot. Maybe at some point He'll choose to have these things revealed to me and treated. Maybe He won't. But He is my ultimate Physician, and I know His care for me is greater than any doctor out there. So I trust in that truth.
 

Dermatology

Since the age of 18, I've had a problem with my foot just show up randomly. It starts as a small red dot, on the side of my right foot. Over the next couple days, the whole side and sometimes part of the top of my foot will get red, swollen, hot, and excruciatingly painful to the touch and to walk on. This would go on for a couple days before it slowly went away. After the first couple times, I went to my family doctor. He said "Hmmm... we'll just see what happens with it."

It only happened maybe twice a year in the early years, so I just ignored it. But then in my mid-20s, it started happening more, and lasting longer - every couple months or so, lasting about a week. It really started to interfere with my life, because while it was going on, I couldn't sleep well (even the touch of the sheets against it would be horrible), and I couldn't walk well, if at all, because of the pain. Pain relievers barely helped. So I went to my new family doctor (new state, new doctor). He diagnosed erythema nodosum, which is usually occurs secondary to one of a bunch of other illnesses. But since I was healthy, it was more likely idiopathic. The choices were to get a ton of testing to try to hunt down the cause, or to just let it go and deal with it every couple months. I hate tests. So together we decided on the latter option.

Fast forward a few years, and I notice that it is coming in clusters. It would happen two or three times a month for three or four months, then not happen at all for another few months. During that time I was having test after test for a bunch of other issues, and I just did not want to deal with this stupid foot problem - which obviously wasn't going to kill me after all these years.  But during the few months of it happening over and over, it greatly affected my life. So my husband insisted that I go see a specialist. 

Enter the amazing team of dermatologists at Georgetown University Hospital in Washington, DC. It takes months to get  into a place like that, so the first time I got in to see them, my foot was fine. But based on my description and the pictures I brought, they said, "No way it's erythema nodosum. ... but we don't know what it is." At that point, I had an open invitation to just show up whenever it happened next (except a weekend of course). It happened to be in a quiet time, so it took many more months before I was able to get in there while it was going on. They thought it was a fixed drug reaction... but that it must be related to food because I hadn't been taking any one particular drug since I was 18. I barely ever took Tylenol. So they did a biopsy. I should note that I had been tracking it over the years, trying to find something I was doing, eating, or being exposed to it seemed connected to. Nope, as far as I could tell, it is just random.

Here was the result: "It's not a fixed drug reaction... we actually don't know what it is... come back when it happens again and we'll reevaluate... we'll take you down and present you at NIH (National Institute of Health) if we have to."  It's not very comforting when this awesome team of highly-respected doctors looks and me and says, "We don't know."

And that was almost a year ago. It's happened maybe twice since then, during times I was unable to make the hour drive to DC. Interestingly, my neurologist is thinking I have some variant of Lupus, and put me on high dose vitamin D (which is being used to treat some autoimmune disorders) about the same time I had my foot biopsy. I'm wondering if the vitamin D has something to do with the decrease in the occurrence. But those are the questions I'm sick of trying to figure out...

Children

*see note

Don't ever say things like this to people:
"Oh, so you had your girl and boy and then quit."
"Aren't you glad you only have two?"
"Well, at least you only have (insert # here) to put through college."

...Because it's rude. And you don't know what a person's story is.

My first child left my womb when I was only 7 weeks pregnant. I know I will see that boy or girl in heaven one day, but I still mourn that loss almost 14 years later.

I had a beautiful, unmedicated labor and delivery with my daughter (now 12). But with a platelet count of only 6,000 (normal is hundreds of thousands), and pinpoint bruises signifying bleeding under the skin, she was quickly transferred to a medical university. There she underwent blood transfusions and IVIG, and had ultrasounds on her body and brain to check for the internal bleeding that is highly likely with platelet levels that low. She didn't have any internal hemorrhaging, praise the Lord. And even though they thought she'd be in the hospital for weeks, I got down on my knees in my hospital room and prayed she'd be released early. God heard that prayer and she was released 3 days later - on my Birthday! I always tell her that she was my birthday present from the Lord.

Tests confirmed that her platelet issue was due to a genetic platelet incompatibility between my husband and me. We are 100% incompatible, and my body will always see the baby's platelets as foreign and attack them. They told us it wasn't a reason not to have kids - I could get treatments during the pregnancy to keep the baby healthy. Two years later, after an extremely difficult pregnancy (part of which I shared yesterday, and I'll share more about later in the month), I delivered my son by c-section under general anesthesia. His platelet count was only 7,000 (at 37 weeks gestation). All the treatments, with all their terrible side effects, did not work on me. So we had to make the very difficult decision not to have more children.

I always wanted a big family. God had other plans. Not long after I had my son, I started having symptoms that would later lead to a brain tumor diagnosis. I've been fighting my health ever since, so adoption hasn't been an option.

It still hurts me that God chose to limit my family size. I cried into the hair of one of my gorgeous little nieces as I rocked her to sleep the other day. But the Lord spoke to my heart. He is everything I need. I am blessed to have the children I have. I am blessed with 18 nieces and nephews (with more on the way). And I am blessed to have a profession where I get to be with women having babies. So I live vicariously through my family and my clients, and I lean on God when the disappointment shows up. And I try to smother all the little kids in my life with lots of love - yes, I am that aunt! Over the years, I have been learning to allow the Author to rewrite my story, trusting that His revisions to my plans are for the best.

A man’s heart plans his way, But the LORD directs his steps. ~ Proverbs 16:9

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11

For more on plans: Read my post Pause, on making plans and waiting on God.

*Unfortunately, I don't know who to credit for this wonderful drawing. If it's yours, please tell me.

Biopsy

Biopsy: n, An examination of tissue removed from a living body to discover the presence, cause, or extent of a disease.

Whether you've had a biopsy or not, you probably know that to biopsy (verb) tissue, you have to remove it from a living body. And that is almost never fun. I've had a few. Some worse than others. Here's the rundown, in order from least to most difficult.

Skin biopsy (2011)- There's this thing that happens to my foot, which I'll tell you more about later in the month. The main thing to know right now is that the doctors are stumped as to what causes it. The last thing we did was a biopsy, which told them what it isn't, but not what it is. The area in question is the instep of my right foot. Big needle into highly inflamed, painful area. Stick, burn, need-my-deep-breathing pain. But after that it was really fascinating. They did what's called a punch biopsy, where they cut out a piece of flesh the size and shape of a pencil eraser, with a circular blade they just pressed into my skin. It was fun to watch since I couldn't feel it. I thought about posting the gross picture... but I'll spare you.

Breast lump biopsy (2006?)- After a mammogram (owwwch), and an ultrasound showed a suspicious lump in my breast a few years ago, I had to have what they call a core biopsy. They take several samples from the lump using hollow needles. I was numb for that too, though I can't remember how I got that way. This was worse than the skin biopsy because, one, location. And, two, the amount of pressure they had to put on that needle to get it into my breast - yawza! It didn't hurt, but it was extremely disconcerting feeling like they were going to go right through the other side! That biopsy showed benign cells, but after the lump continued to grow and change, I had to have it fully removed and biopsied again, just to be sure.

Bone marrow biopsy (2001)- Here's the absolute honest truth: I would rather have a baby with no drugs than ever have another bone marrow aspiration and biopsy. Oh. My. Gosh. It's been over 10 years, and the place where they did it (iliac crest) still aches sometimes. During my pregnancy with my son, my platelets, white cells, and hemoglobin counts kept dropping. I was hospitalized to find out why... thus the biopsy to check for Leukemia. It hurt like hell and I didn't have any family or friends there to comfort me. But the Lord was there. And, despite the pain, I was able to stay calm enough to warrant compliments from the doctors and all the onlookers (teaching hospital). I did not have Leukemia... more on that later.

Brain tumor biopsy (2004)- Ok, so I really considered placing this before the bone marrow biopsy on the scale of difficulty. I was asleep, after all. But they did cut pieces out of my skull and 1st and 2nd cervical vertebrae... and slice into my brain...and remove tissue very close to my brain stem. The recovery from that surgery was horrific. So, I don't know why I feel like the bone marrow biopsy was worse. They did get almost all the tumor. I did not have brain cancer... you guessed it, more on that later!

I also had biopsies done on a colon polyp and tissue from the lining of my bladder. But both of those were secondary to other procedures and so they don't really count, right?

Every biopsy brings a level of upheaval as life seems suspended, waiting for the results. Do I make those long-term plans, or don't I? What if the biopsy brings bad news? How can I wait so long to find out?  In those moments when the unknown surrounds me, giving me nothing tangible to hold on to, I always find God ready to support me. He will not be surprised by the results. He has already written this scene.

Author

I like to think of God sitting at a big oak desk, writing my story in actual ink on actual paper. Would he need to pause as he went, wondering what I should do next? Would he scratch things out and write them differently? Did he start with several possible endings in mind? Has he chosen one yet?

Of course, God doesn't sit at a big desk and write the stories of every person in the world. He doesn't need to, he just knows them. And each is important to him. God is the Author of my life, and I know the story he has written for me is perfect for me. All the health challenges in the world can't match for power and love my God has for me.

During the A to Z Challenge, I'll be telling you about some of the health challenges I've faced. And about the power and love God displayed through them. I hope you'll stay around and hear the whole crazy story!

I'm doing the Challenge on my other blog: Coffee in the Garden. There I'll be talking about some amazing things in God's creation. So check it out!

A 26 Day History

Ever since I started this blog, I have been trying to think of an interesting way to share my long, crazy medical history.  No need to bore you with, "and then I felt fine for a few months...yada, yada."  So when someone told me about the A to Z Blog Challenge, I realized I found the way.  26 days in April, 26 blog posts, each having to do with a letter of the alphabet. Along with over 1500 other bloggers,  I will start Sunday, April 1st and publish a new post every day except for the remaining Sundays.  I'll share my history and what God has been teaching me in the context of a super fun challenge. It will be non-linear, and hopefully non-boring.  

I'm also doing this challenge on my other blog - Coffee in the Garden. Visit me over there during April to read about the wonders of God's creation.

Insignificance

It's 10am. And already today I have run across several heartbreaking stories of people (one a little girl) fighting cancer.

The daily struggle to survive.
Dealing with the aftermath of treatment.
The constant feeling that death might not wait too much longer.

I also know people who struggle physically on so much higher a level than I do. My own brother is dealing with daily excruciating pain, the cause of which the doctor's haven't found yet.

And I feel insignificant. My story, my words. My life seems like puffy clouds and butterflies compared to so many others.

Days like this, I'm not sure what I'm doing. Why do I think I have anything important to say?

...other than I feel called to say it.

And I guess that's the only reason I need.

About This Blog

Medical events have been an ongoing part of my life for over a decade. I can remember that I was once "well," but I can't remember how that feels. Correction - I do know how it feels to be well, because I get glimpses of it now and then. Moments of reprieve where my body doesn't hate me. Sometimes it's a few days, sometimes it's weeks or months. But, I can't remember how it feels to not have a long medical history. To not have a neurologist, dermatologist, and urogynecologist that I see regularly, and lots of other -ologists I've had to see. To not have problems looking for diagnosis, and great doctors with no answers.

I forget how it feels to not wonder during the good times when it will get bad again. 

The Lord has humbled me in my body - to rid me of the god of health and put Himself on the throne as the Healer of my life. He is the Great Physician, but it has only been as a sick person that I have really appreciated how great He is. And how this Physician is more interested in my spiritual well-being than my physical well-being.

By breaking my body, He has strengthened my soul.

I live with chronic illness. Not a chronic illness. My problems are varied and often strange. If I'm not dealing with a long-term effect of the most major event of my medical history - a brain tumor diagnosis in 2004 - then it will be some random thing that I have to go to a doctor and track down an answer for. Living like this is difficult. Some days it feels almost impossible. But I am in the care of the Great Physician. And as I carry this cross, His strength is sufficient for me. And I'm never going to stop talking about that.

This blog came about because I was writing a book that I couldn't end. I fretted over what direction I should take it.  When the answer came, I wrote about it on my other blog, as part of another post:

"As I sat thinking about this last night, and continuing to fret over my book dilemma, the Holy Spirit opened my heart to consider whether I really understood what God wanted me to do. Then the revelation - God asked me to write about it. He never asked me to write a book. That was my "interpretation." Like yesterday when my daughter decided that when I said, "go to your separate rooms," to her and her brother, I really meant, "as long as you are quiet, you can be in the same room." Like my daughter does with me, too often I view God's promptings through the lenses of my own (insert fruit of my sinful nature here).

I started to think outside my own desires. It's a novel concept I should do more often. An ongoing struggle needs an ongoing story.The full impact of my story - the drama, suspense, fears, joys, prayers, and praises, all the highs and lows - actually exists in the evolving nature of it. Let's say, hypothetically, that I do eventually come to a place where I could put a The End to my book. Consider the people that would read it, however many years from now. I would hope that they could take something uplifting from it, that my story would cause them to praise God and seek His strength for their own trials. But they would miss the day in and day out, including the tangents and gritty parts that the editor cut because they didn't forward the story or I went over my page limit. For instance, I might want to communicate, "Hey, my foot is acting up today and I'm struggling to keep my attitude in check because I really wanted to hike with my family." That's the moment that doesn't go in the book because it's not profound enough. It's also the moment that I need a lot of prayer. It's times like that I want the family of God praying for me. And I want people to say, "I know how you feel. Can you pray for me too?." In the moment.

So I decided to start another blog, and give it the dedication I was giving to writing my book... before I got stuck on where to go with it. It's called In the Care of the Great Physician. My plan is to get it up and running after the first of the year. It's not baseball, but I figure, if I write it... I know for sure there are a lot of people like me with ongoing challenges, and I hope that the Lord can use me to touch their lives, and them to touch mine" 

It's the words that need saying, the vehicle isn't as important right now. I want to inspire people, and be inspired by them. Maybe you need a word of encouragement, or you can encourage me. I'd love to hear your story.

Thanks for reading my blog. Have a blessed day, and come back soon!

Introductions

I am a 35 year-old wife and homeschooling mother. My passions include writing, gardening, reading, camping, and all things birth and babies. Someday I hope to hike the entire Appalachian Trail in one year. I am outspoken and have strong opinions on things like healthy living, politics, religion, and parenting. Although I was raised in a religious household that gave me a solid belief in the God of Christianity, I only began a true relationship with Christ about 15 years ago. He is my Great Physician. The One who has held me and led me through a decade of medical issues galore.

I have been blessed with a wonderful husband and two beautiful children. I wanted more children, but didn't have them. The limit on my family size is part of my medical drama. I've been a doula and childbirth educator for 10 years, recently adding prenatal dance classes to my list of childbirth services.

My almost-sane husband Russ is my best friend and love of my life. Often when I'm leaning on Christ, it is Russ that I'm leaning against. Although he is not a nurturer or caretaker by nature, Christ works through him to take care of me. Russ is a crane operator, and right now he's working and living 2 1/2 hours away, and we only see him a few days a week.We've been married for almost seventeen years!

Victoria is my dear pre-teen daughter. She has a heart for the Lord, and God is raising her up with a nurturing spirit. Because I've been dealing with medical challenges since she was little, she's had to take care of me and her younger brother a lot. I used to feel like I was ruining her childhood with all that responsibility. But then God showed me that He was using my illness to grow her into the person He wants her to be. Duh! Victoria loves crafts and writing.

My 10 year-old son Morgan (his first name is Gabriel, but we've called him by his middle name since birth) is a crazy bundle of energy and moodiness.  He loves the Lord, but is constantly struggling to overcome his impulsiveness and negativity. Despite this, he is one of the sweetest boys I know. Morgan owns about a million Legos. We often find ourselves having to step gingerly around piles as he builds things in the hallway. 

We also share our home with a loving boxer named Levi, a bearded dragon named Stripes, a ball python named cammo, 12 tarantulas, and a roach colony (to feed the lizard and tarantulas).