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!