Keeping the faith

 Lana-30

The “before” picture. After Lana was born, we had professional pictures taken. I had no intention of being in them, but she wouldn’t stop crying so the photog told me to jump in. I’m SO glad that I did! Hence the ponytail:)

I was contacted recently by a journalist in New York City. She asked if she could interview me for a story on pudendal neuralgia. I knew that would mean opening old wounds, bearing my soul for the general public, and going over humiliation after humiliation for anyone to stumble on. I have been brought so low, so many times, I’m almost immune to it now- almost. I’ve discussed my private parts a hundred times- at least, suffered treatments that were as painful as the injury it self, been shamed for taking medication as directed, and told there was no “cure” for my neuropathy. Through it all, my sweet James stood by my side, and my parents worked so hard to keep our household from falling apart.

surgery

The morning of my surgery. Blissfully ignorant. Low risk, thought I would wake up in about an hour, good to go.

I agreed to the interview, knowing that everything that I said wouldn’t make it into print, gory details are the most interesting to read, and that it would definitely be one more humiliation to add to my long list. Truth is, I wanted to share because ever since the beginning, I kept saying to myself “if I ever feel well enough, I want to be a patient advocate. I want to help other people.” Not everyone has a James, and not everyone has parents, a sister, friends, neighbors, and a church family like I do. This experience would have ended very differently had I been alone. There was a woman in a support group that I joined for a while, who killed herself earlier last year. Her story isn’t that unusual unfortunately. Chronic pain is isolating. I know several people whose marriages dissolved because of health struggles. Friendships change and people feel so alone. I am so incredibly fortunate to have the world’s best friends. I don’t see them as often, but they have visited me here at home and while I was in the hospital. I have had meals delivered for a year and a half (not every night of course, but regularly).

I felt like it was my responsibility to share some, so that someone reading the article, wouldn’t feel so alone. Maybe, one medical student would randomly see the article and think, “hmm… maybe I should look into pain management, and chronic pelvic pain.” It’s poorly understood and studied- there are plenty of opportunities to find patients I can assure you!  Every person with PN doesn’t have all of the same symptoms. Some of the symptoms described in the article apply to me, and some do not.

I could write for days about the spiritual journey that this has been. I will write about faith regularly. It is part of my daily life, my stream of consciousness, my conversations throughout the day, and my decision making process. At the beginning, everything felt like a bad dream. Surely, this isn’t for real? I will wake up? This horror will pass? I actually thought- I have had my “quota” of suffering for the year. You see, before my surgery, I had a difficult pregnancy. I suffered from hyperemesis gravidarum, and migraines that were so severe, I was treated by a neurologist the entire time, and hospitalized a few times. I was bedridden from the nausea and headache pain- it was blinding. I thought, I have suffered so much lately! That is ENOUGH, and this new fresh h-e-l-l has to pass, soon, right? My thoughts also were along the lines of “I’m a ‘good’ person, not an ax murderer, I have 6 kids to take care of, I’m young, this can’t be real. I have to get better! This sort of thing can’t just ruin my life- I don’t believe it.”

Oh Amy. I knew the folly of my train of thought, but I couldn’t stop the freight train of anger and justifying my conclusions to God. He had to be wrong, it had to be a mistake. If I prayed the “right” way, said the right things, the pain would pass, and I could have my old life back! Wrong, wrong, wrong. Through MUCH prayer- I mean constant, soul searching, scripture searching, and just plain crying…I knew deep down that our Lord isn’t a magic genie in a bottle. You don’t say the right words and He grants you your wish. It doesn’t matter how nice you are, or how many kids you have, no one is immune to suffering. To think for one second that anyone has quota that can be met…is ridiculous, and complete arrogance on my part. Suffering doesn’t only happen to the “bad” guys. There are so many people around the world who know pain, what made me so special that I should be immune?

michigan

This was taken before one of the several procedures in Michigan, where I lived for a month. I tried a new type of neuromodulator that ultimately failed. I was forcing a smile, because we were sending the picture to my kids. I didn’t want them to know how scared I was.

God never guaranteed anyone an easy life. HE is enough, that’s sort of the whole point. I can read that over and over, but unless I have lived it- everything else is gone, and all I’m left with is faith, I didn’t internalize it. This suffering, even in the extreme, is temporary. There were so many times that I didn’t pray to live, I prayed that the Lord would let me come home sooner- right then. I couldn’t see around the pain in the moment, couldn’t think five minutes in advance. I begged him to let me go. He, obviously, said “no my child, you are stronger than you think, hang in there.” I know what a dark valley is- one with no light, no directions, just the knowledge that I am supposed to trust. I am supposed to put one foot in front of the other and keep going in the dark. If I do that, trust blindly, I will see more clearly than I ever have before in my life- but not on my time, on His.

I’m not going to link to the article- it’s live, and being well read! I’d rather my kids not read some of those vocab words just yet:)

My grace is sufficient for you (2 Corinthians 12:9)

Self-Care

gal 1

Ok, it’s ironic that I’m writing on this topic at all, because it’s so new to me! I almost feel a little hypocritical recommending it to others, when it wasn’t even part of my vocabulary for so long. I was in survival mode. Truth is, intense pain makes you selfish. I would explain to my husband- I felt like an animal, retreating into myself, just thinking about surviving. Basic needs- food, water, breathing in and out. I couldn’t even think about anyone else, which is so contrary to my nature, because I was concentrating on making it through life, one hour at a time. When I was able to catch my breath, I realized I had worn pajamas every day for ages. I was housebound, so no reason not to! When I got dressed, my kids would ask “do you have a doctor’s appointment?”

I wrote earlier that I got some make-up for Christmas, because my friend wears it and she looked so cool in her how-to videos! By Christmas evening, I had emailed the company to see if I could sell it, because it was so fun. It was new- feeling pretty and just putting myself together, even if I was staying home:)

The company’s message just happens to fit into my own personal view of self-care. It’s not geared towards glamazons, although, if you’ve seen some of the youtube videos, you are aware that there are some serious Artists, (with a capital “A” out there!!!). Every person is unique, special, and has the right to feel good about themselves. Often, it helps to put a little color on your face. Not always, make-up isn’t required for self-esteem by any means! However, I love some color and to bring out my best features. People have very different ideas of beauty, and what makes them feel good. Sometimes, it’s a hot bath, a chat with a certain friend, new shoes, or just smiling!!!

Maskcara beauty has put together fun collections to celebrate “Galentine’s” Day. If you are single or taken, it’s always a great time to be thankful for the gal pals in your life, who make you smile. Here are some pictures of the collections. Fun, beautiful colors, and  way to save money if you want to treat yourself or a friend who needs their day brightened!

 

 

Valentine’s Day

 

 

 

I will post “before and after” pics of myself. I know everyone can get a kick out of those:) Haha- keep those jeers to yourself:) Even after coffee, it’s still not pretty!

 

My Idea of a “Good Time”

Last Monday, January 15th, we traveled as a family to Nashville, TN so that I could see a pelvic pain specialist. I have never taken a trip to see a doctor, with the kids before. I have traveled many, many times with my husband or one of my parents. I can’t drive myself, so they would drive me and I would recline the seat all the way back and lie flat as we drove hours and hours, in hopes of finding someone who could help me. I don’t pack light! I have a cooler with ice packs, bag of medicine, multiple pillows, and lots of warm clothes, because I am cold all of the time now. It’s stressful- leaving my comfort zone, traveling in pain, wondering if I will have a flare, be able to sleep, etc. I always get nervous ahead of time. I have left the kids so many times- I think I’ve been gone at least 4 months, out of the past 16 months. I miss them so much, and despite the stress of going places with them, James and I decided that this time, it was worth it to go together. That was huge for me. I felt strong enough to bring them along!

James had vacation this week, and the kids had Martin Luther King Jr. Day off from school. As it turns out, they had the whole week off, because of some snowflakes in Georgia, AGAIN! Yes, that marks twice in the same winter that we have gotten snow in GA. Woohoo! If you haven’t seen the Holderness family video about Southern families in the snow, you should! I’m not sure about copyrights and if I’m allowed to post it here? Please, google that one! Every word is true:) We told the kids that they were going to go to Tennessee, and stay at an airbnb place. Well, you would have thought that we were taking them to Paris or something. EVERYONE they saw heard “GUESS WHAT?!! We are going to TENNESSEE!!!!” It was the most exotic, fantastic place they had ever heard of! Haha. What made it so special, is that they had always been left behind when I went on another quest for medical care. To be included! Oh, boy was it a big deal! Team Whitaker was together and it was going to be an adventure, wherever we went!

I went to see Dr. Barry Jarnigan in Franklin, TN. We are acquainted with with him and his work, having spoken to him and seen him in person before. He offers amniotic allograft injections, which are sort of like stem cell injections. The ones he performs are made from donated amniotic fluid from full term pregnancies. A mother, somewhere, donated part of her body that nourished her baby for nine months. Some brilliant scientist figured out how to use this life-giving substance, and create a new substance that could enable nerves to regenerate faster and more completely. I did not feel comfortable receiving stem cells from embryos. That was offered to me, and I declined. It was touted as a “miracle” cure, and for people in pain, they will usually grasp as straws to find anything to alleviate their suffering. For me, having a clear conscience was more important. The amniotic allograft injections were an answered prayer. They take 6-8 weeks to work, and I received my first round last May. I am not cured, but they helped enough that I was able to discontinue several medications.

Our family was SO excited to be together, going on this adventure! I got nervous before we left, but I swallowed my nerves and pushed on. On the way up there, we stopped at a Shoney’s with a full buffet, and believe it or not, it was their first time at a big buffet. Oh my word. We may have broken some kind of record for trips up there. Everyone had to have at least 3 servings of jello. Yes, of all of the 97 differend kinds of food, the green jello was the most enticing. When we arrived, the house had an xbox360- which proved to be more entertaining than all of the Magic Kingdom. Wow. My kids don’t get to play video games so it was a real treat! We had tournaments and the laughter was constant! I have never played xbox before (no desire whatsoever), but my 4 year old wouldn’t play in front of his big brothers. I offered to be on his “team” so we held the controller together. In a shocking upset, we WON! His oldest brother, who happens to be the most competitive person on the planet, was flabbergasted! I was too! Nick, my 4 year old, could not have been prouder of an Olympic medal. He beat his brother! He talked about it for days.

It snowed a good bit, and with the windchill, it was -10 at the beginning of the week! My procedure had a small hiccup at the end, which required that I stay an extra couple of hours in recovery. My husband kept 5 kids in a surgery center waiting room for almost 6 hours! If that doesn’t qualify him for some kind of medal, I don’t know what does. James is my hero. He does so much for me, for everyone, and he does it with enthusiasm and joy (99% of the time!). He is so strong, that I have to remind myself not to lean too hard on him- he’s just human, and the amount of work and stress on his shoulders is enough to make anyone break at some point. He has been our rock in this crazy storm!

I was more sore than I anticipated during the recovery, but I was still so blessed to have the kiddos there. They laughed and had fierce competitions on xbox, ate an unreal amount of snacks and comfort food during the bitter cold winter storm, read books, laid beside me and cuddled, and generally made the pain more bearable, not more stressful. James took all of them to Biscuit Love and the Science Adventure Center on Wednesday, since we got stuck an extra day. No one in Georgia knows how to salt the roads, so there was no way for us to get home:) 8 hours later, after a calorie and science extravaganza, they arrived hom to tell me all about their adventure!

Y’all, I honestly had a good time! We were together again, and it felt so good to be a family. Tennessee meant SO much to them, it was exotic and they got to be included in mommy’s treatment trip. My mom kept my youngest, Lana, who hates cars with a passion. She would scream so hard as a newborn, that she would throw up in the carseat after a 10 minute ride. She just doesn’t do car trips yet! It was a gift, and a blessing, that we were able to be together, that the procedure went smoothly (for the most part), and that I was able to recover while James kept the wild ones occupied! Perspective. God has answered prayers in different ways than I expected and hoped, but he did it in His perfect way. Somehow, along the way when I didn’t notice, I got braver. It wasn’t a big, warm fuzzy whoosh of strength. Subtly, over time, the constant fear diminished. It creeps up from time to time, but I am able to push it back down. I trust that God is working this for good- my outlook is proof! I think going to Nashville to see a doctor, as a family, is a pretty good time!

Here are some pictures from our epic trip- my first one in two years with my children!

shoneys

Shoney’s!

IMG_1980   We tried to go to a cool, family friendly restaurant, but the wait was too long and the line was outside. So… we ended up in a bar! Eating pancakes:) On the bright side, it was really loud in there, so we blended right in.

IMG_1990 (1) Post op, feeling crummy, and guilty about James being in the waiting room for the whole day.

Recovery! I had wonderful company.