Wednesday, October 4, 2017

You can have the last cookie

While dealing with my total colectomy, we had some very dark days. Days we felt weak and broken. We always had each other to lean on, although some days it felt more like we were equally propped up against each other and one strong wind could take us both down.
We have made it a long way from hospital stays, ER visits, blood transfusions and medication schedules. Those are all in the past. 
Many people tell me how strong I am but I am nothing without my support system. Most of you reading this have played some part in my recovery from life with colitis. My colon is gone, but there are still trials we learn and overcome every year. I do my best to tell everyone how I am not the strong one- I am a product of the love and support I get from all of you. 
When I was really sick, a sweet friend who is like a sister to both of us, organized a book of love and intentions. She was able to get written notes from a number of loved ones, cheering us on from all around the country. She presented it to us during a benefit show other friends hosted to help pay my medical bills. (Is this real life!? Who has friends like this?) I am extremely lucky to have all this support and love to get me though those darker days.

We could never repay you or thank you enough. In honor of all the love and support we've had over the years, we will be leaving meaningful sayings (including, "you can have the last cookie") that got us through those dark times, during our dirtbag roadtrip. The country could use a little pick me up. We hope to make someone smile. And if we do, please know you played a role in it, too. Thank you, thank you, thank you! 

Update on Pouchitis Vs. Crohn's

After a number of tests, we've been down graded from possible Crohn's to very bad pouchitis. This was unbelievable to me after seeing the actual holes in my small intestine. But, let's go with what the specialists say.
They put me on suppository steroids, UC oral medications, pain medication and no real information on diet or lifestyle change. I'm not a fan of taking any steroid at this point because of the deadbone issue. (To catch you up on that, I was experiencing sharp pains in my left knee when I would walk, stand, or even straightening my leg while in bed. I went to the doctors, so many doctors, who did some tests, so many tests, for them to tell me that part of my bone is showing signs of necrosis, or death! Likely caused by prolonged use of steroids. This is commonly found in women in their sixties or woman who have been on steroids for other chronic illnesses.) So now I'm really not a fan of steroids.
The doctor assured me that the suppository will not affect the bone issues.
Because I was not told to change my diet (I had gone back to my regular, healthy-ish diet that included grains, beans, carbs, and sugar), I kept eating like normal and taking all my medication, with very little changes to my situation.
We tried many weeks of antibiotics that lead to C. Diff and a whole host of additional issues.
Months went by with me going from specialist to specialist for digestion and bones, and getting this test and that test. But nothing was helping. Even the tests would give us some information but still no clear answer.
I finally was sent back to my General Practitioner to refer me to pain management. I was just expected to live with pain and not being able to walk in my 30's until it got so bad to require surgery. I told her I need something. I couldn't walk, I couldn't drive my manual car, I couldn't walk my dog. I couldn't live like that. I asked for a cane. She obliged and offered another suggestion. "I have a book I'd like you to read and try the diet. You'll be ahead of the game since you've already done Paleo, but there are a few more restrictions. But I think it will help."
She was so right. The book was The Autoimmune Solution by Dr Myers, and the diet restricted grains, dairy, beans, corn, potatoes (same as the Paleo diet), but also nightshade plants (such as tomatoes, peppers and eggplants).
Within a week, I didn't need the cane and the pain in my abdomen began to finally subside. Unbelievable. The specialists still don't believe the diet makes a difference but I'm living it.

Here we go again

Last week I was admitted to the hospital. Rectal bleeding for about a month. It's a thing. I had already talked to my doctor- really, even getting to a doctor is kind of a big deal for me. At this point in my medical life, I should be as close to normal as I could be. I had my colon removed, for crying out loud! When I went to the GI, I told him my symptoms and he wanted to do a scope. The thought of a scope with all the pain I've been having caused a lot of anxiety. He scheduled me for the next available appointment- two weeks out!

I tried. For a week, I tried to keep it together. I ate low fiber at first. No change. I ate clear liquids (basically jello, broth, and apple sauce) and still no change. I tried to move my appointment up a week and still nothing from the doctor. I called the advice nurse (brilliant move on my part) who advised me to go straight to the ER- do not pass go, do not collect $200! Straight to the ER.
I always say, compared to colitis, this is not really a big deal. I'm not light headed, I don't feel like I've lost a lot of blood. Could it really be ER worthy?

After sitting in the ER for three hours, they finally got me a room. With in minutes they had my IV hooked up and were sending morphine direct to my blood stream. Ahhhh sweet relief.
That night was kind of a blur. We did an MRI and then waited for the scope the next day.

The nurse overlooked the "prep" that I knew was looming. I opened my big, fat mouth and asked if I would have to do an enema, as I knew I would. Of course they called for an enema! Years of UC have trained me for these tests. It's second nature.

As I started my dreaded enema, while in the pain I was in, knowing it would not be comfortable, I began to feel a horrible burning. I ran to the toilet, IV pole trailing close behind, and could barely stand it. For the first time ever, I pulled the emergency line next to the toilet. When a voice came over the intercom, I just bellowed, "I need help!"

Every person on my team came running in, the nurse was last with a syringe of morphine, finding me hunched over on the commode.  She asked if she could help me to the bed but I couldn't move. She plunged the fluids into my IV and I sat until I could wipe the tears from my face. I slowly moved to the bed.

She called off the rest of the enemas for the day.

When I finally saw the doctor who was to preform the scope, it was already approaching 3pm. I-85 was shut down the night before while we were in the ER and my GI was stuck in street traffic dealing with the freeway closure. I hadn't eaten or had anything to drink since yesterday at midnight. I turned-on my side in a small room full of the scope team (is that a thing- because there was a whole team in there), ready for my scope, they put me to sleep.

The test should only be about five to ten minutes. By the time I woke up, it felt like it could have been a hour. They sent me back to my room with pictures from the test. I had never seen anything like it.

We speculated but the doctor was quick to follow with possible explanations. Either we have a sever case of pouchitis (inflammation of my j-pouch) that is leading to fistulas (holes), or we have Crohn's disease.

I got to see a couple friendly faces. My old surgeon came around to check on me. When he poked his giant head in my hospital room door, it was like seeing an old friend. I was relieved when he said I'd have a long way to go to before requiring surgery again.

I'm home now after spending four days in the hospital. We still don't have the test results back yet. I'm taking medication as though it's pouchitis- antibiotics and pain medication. But everyone seems to be concerned that is it actually Crohn's disease.

Today we wait. Tomorrow we hope for answers.

Wednesday, January 11, 2017

Send the Stork to the Dickerson's House Fundraiser

This summer we decided to start a fundraiser for our last round of IVF. At the time, our plan was to use our last two embryos in one transfer for our last shot.

Here is the original post from our Youcaring site that has now been updated for our new adventure!

For some people, the stork doesn't offer free delivery. After countless tries the natural way, and three failed procedures, we have one chance left with IVF and are asking for a little help.
We met while both attending Cal State Northridge in 2001. Eli was on exchange from Winthrop University and never expected to fall in love with a California girl. By the time we were officially dating, I knew we'd marry and start a family.
Ten years ago we got married on the beach in California. Before our third anniversary, we got pregnant and miscarried during a colitis flare. I'll spare the details of the pain and suffering that came with colitis. I'll skip over the violent attack at work, once I was healthy and ready to start our family.
After every falter, we found strength in each other to take the next step.
We met our fertility doctor in 2014; he was confident in our ability to start a family, with a little help from In Vitro Fertilization. Though we can't verify without another surgery, Dr Slayden thinks that all my surgeries and abdominal trauma from colitis may have caused scar tissue to block some essential functions for fertility. Everything pointed to IVF being the answer to our infertility- bypass the scar tissue and we should be good.
We took out a loan to start IVF and decided that we could only afford to do this once. We were not strangers to medical procedures and we knew we had to discuss all the options before we got too wrapped up in the possibilities. After the miscarriage we had already talked about adoption and we still know that we will adopt when the time is right for us.
Our IVF harvest yielded seven strong embryos. We decided our first transfer would be one embryo; our strongest embryo. It failed.
Our second chance, we would transfer two embryos. Transferring two would increase our chances that at least one would be successful. Both failed.
Our third chance felt differently. As you can imagine, there is a waiting period where you don't know if the transfer worked or not. The third time was the charm when signs of the transfer not working, did not show up during the waiting period. I marched into the nurse's office for my blood test, practically positive we were finally pregnant.
That night the doctor called us with sadness in his voice. He said two words, "I'm sorry."
We have turned everything upside down trying to figure out the best way to support our last two embryos. I have reduced my hours and stress at work. We have improved our diets and have taken time to slow down and decompress.
We hope to have a successful final IVF round this fall. But we need some help.
Over the last couple years we have spent a lot of money on IVF procedures. We  have been extremely lucky to borrow money from our families and we have been even luckier to have both friends and family donate their tax refunds or overtime pay to our "baby fund," though no official fundraiser was ever created. Until now!
We created this page to see if anyone else would be willing or able to support us in our last chance at IVF. As you can imagine, financial struggles are an inevitable part of IVF and being able to reduce that stress could be the miracle we need.
Any amount you can donate to our fund is very much appreciated. Every dollar makes a difference; every share of our story gets us closer to our goal of $9000 to cover medication, embryo thaw and doctor visits not covered by insurance.

Above all else, we want to thank everyone who has offered us love, kindness, and support during all our tribulations in the past. Your continued love is all we need. But a few bucks could help too. ;)

Saturday, July 30, 2016

The Benefits of Car Camping VS Dump Camping

Let's be clear, we know we are glamping. We have done our time as dirty kids with a tent. When it got hot, you took off more clothing. When it got cold, you put on more clothing and started a fire. We ate dehydrated crap and fit everything in backpacks. If you haven't heard my story about Eli taking me backpacking, here is a brief summary: uphill into camp, forgot food, hiked uphill out of camp. The photos from that trip show my lack of enthusiasm. That was the weekend we learned to communicate our expectations for our trips. And he agreed to never do that to me again.

A little mood lighting for night reading? Of course!
So, now we glamp! We love to pack up the car, plan a nice dinner, drive to the mountains and dump everything in our camp site (dump camping! I know, I just learned that term too!). Everything we need is in the car. I love to play house in the campsite. I've always been that one who sets up the tent, gets the gear organized and starts on food! It's great to be paired with someone whose first priority is either to run somewhere or sleep somewhere. 

Home sweet home. 
Now we are older and want to enjoy the little perks of extra planning. Although there is not tent, there still a good bit of set up. It took us a couple days to get in a routine of shifting everything out of the back seats and methodically repackaging the front seats to allow full sleep mode. Because of animals in camps, we can't just pull out all our food and play set up. First we set up the big screens on the windows and roll them down to what will best suit us during the night. We do our best to take out what we need for dinner and pack away what we don't need so we can get the bed set up before it's too dark and buggy. By day three we figured out, since Eli is running most mornings while I sleep in, how to pack the front seats to accommodate dinner that evening AND whatever Eli needs for his morning adventure. 

There is definitely more attention to detail with the dirtbag mobile than there is with dump camping. Almost every transition has a plan for what we need to access before the next transition. Snacks for driving, any meals on the road, what we need first thing in the morning, where will the dinner prep gear go once it cools, how much water are we going to drink tonight...

I love it! This is why I camp.  

Dirtbag Trip Begins!

Day 1. Leaving Atlanta, Georgia. 
We started off on our adventure we had been planning for months. So much of this was thought out in advance. For me: what food would pack best, meals that we can easily prepare, where and when we would have to stop at markets along the way. Eli is more of the map guy. He knows where it will be coolest at night, the best campgrounds and how long each day's drive will be. We are perfect together.

Since we won't have access to a freezer, we figured we'd take Ziplock freezer bags to fill with bags of ice along the way. I didn't want to dump the ice in the cooler, because then everything gets soggy and it can ruin a good cheese (am I right?). The day before, I came up with, what I thought was, a brilliant idea! Smaller ice pieces melt faster because of the greater surface area. I had the ice machine going all weekend to make sure we had enough cubes to get started. But if I could make giant pieces of ice, it would take even longer for it to melt because it has less surface area. So, I pulled out a couple freezer bags and filled them with water. I placed them ever so carefully, flat, in the freezer. So. Smart.

The time came to finally pack the perishable food. I pulled out my ice blocks and put them in the cooler. The plan was to have one on the bottom and a second one in the middle so everything would had a little bit of ice around it. The plan did not take into account the measurements of the cooler nor the ice blocks.... They did not fit. 😳 So, plan B, ice cube bags for the cooler.

We have a "cool bag" that is probably marketed to keep your frozen goods cold on your drive home from the store. It is probably not advertised as a cooler substitute. I was reminded of its limitations as we pulled into the rest stop to sleep.

Since I had the ice blocks, I figured we could use them in the cool bag. I placed one at the bottom of the bag and put our dinner items and things that don't necessarily need to be refrigerated (cauliflower, peppers, onions, carrots- everything cut and prepped for usage) on top of the ice. Zipped it up and kept it close, incase we need it while  driving.

Thank you, Starbucks parking lot!
The plan worked great for dinner. We set up our kitchen station at our last coffee run for the night; we pulled out our veggies, lettuce greens, chicken and cheese. We mixed all the ingredients and topped with homemade dressing and some walnuts. Balancing my salad in my lap, we pushed on through the evening. 
Finally, it was time to rest. Our planned rest stop was closed for remodeling! Google didn't tell us that. We pushed through until the next stop about forty miles later. We were cranky and ready to sleep. As I start making up the bed, I find a giant wet spot where this cool bag was. My brilliant idea leaked as it slowly melted. 😬 And now there is a wet spot in the bed, down to the wood frame. Eli had to wring out the egg-crate and we had to ditch the sheets for the night until we could dry them out. We packed extra blankets as an after thought but they have already come in handy. We layered all the dry things and finally went to sleep.

The mistake that keeps on giving: this morning, my seat was also wet from all the moving I did of the cool bag. I used my rain jacket as a barrier and we drive on.

All in all it was a good night. One car alarm went off in the rest area and there were a couple of noisy visitors, probably trying to wake up in the middle of the night on their trips, but we got in some good sleep and weren't too hot with our personal fans.
I wish this was in focus but this is the best I can do without my glasses on. 

Sunday, July 17, 2016

Privacy Please!

We will be living in our car for about eleven days and will need some privacy. Our next focus of the Dirtbag Mobile was removable curtains and screens.

Curtains- We found tension rods at Family Dollar for $2.50 each. Four is enough to cover our larger windows. The tension won't really work inside the door frame (no matter how hard I hope), so we attached them to the plastic parts of the car around the windows with sticky hooks we also found at Family Dollar. I found a ton of fabric left over from another project that never got competed. I just measured and cut the fabric to be 1 1/2 times the width of the window and sewed an inch and a half loop for the poles. Alternatively, you could us any poles or dowels you have laying around and we also talked about cutting holes in hand towels to pass the pole through and have curtains that pull double duty. Perfect for real-hard dirtbagging.
We wanted to make sure to not feel like we lost space with the curtains. As they hang, they drop a few inches away from the door. We bought Velcro dots to attach the bottom of the curtain to the door to give us more breathable space when they are closed. Once I hung them, I was able to situate the tail ends with the seatbelt!! The curtains fall just in front of both front and back seat belts. No Velcro needed; no space lost!! 

For the back of the car, we used left over cardboard from another project and for the windshield, we'll just get a regular sun shade cover.
Screen attached with magnets and hangs well below the bumper. You can also see the cardboard for the back window above this adorable man. 

Screen is large enough to cover the table if we need to keep the flies out during dinner prep.

Screens- I went back and forth on how to make screens for the windows. In the desert, we'll need to sleep with the windows open but I'm not about to play with flying creatures at night (did that once- not fun). I was going to get a Magic Mesh door and just cut it up to size. But, they are expensive and I would probably need two to cover all the windows. Of course, Ikea has those fantastic mesh curtains for $5- always. You can't beat that! I was able to cut screens for the back windows, front windows and the hatchback, and have some left over to fix the first ones that are just slightly too small PLUS one whole panel that will fit nicely in my hallway door. SO MUCH MESH! To attach, we used small, ceramic magnets that the door can actually close on without a problem. It takes about eight magnets for each window. We wrap the screen around the door frame so it is pulled tight when the door is closed and it opens with the door.
Here is the first edition we tried out on a weekend camping trip. The screens are now a little larger to wrap around the window better.
For extra ventilation, we got two stroller fans on Amazon with clips that fit on the handle above the windows. This will allow us each to regulate our own wind speed though the night.

Don't forget to check out the building of our Dirtbag mobile to see what we started with!

Friday, July 15, 2016

The Bells and Whistles

Now that it is mostly assembled, we wanted to add the little things to help make it more user-friendly.

Each side has a cubbie that will (hopefully) house our clothing and personal items that need to stay out of sight. We drilled two finger holes on each cubbie door for easy lifting. After we added the extra length to give us 6 feet in sleep mode, we realized we lost the brilliance of these holes when we were in drive mode and when we would need them most. So, we added two holes on the extending flaps as well.

Next was the back storage. We wanted to make sure the back opens up all the way to reach items toward the middle of the car. To help with packing the "trunk" under the sliding table, we added a hoop and hook to hold it open while loading and unloading. We used an "s" hook we have from Ikea and just made a loop out of plastic string we keep in the car. The "s" hook attaches perfectly to a child seat   
           anchor in the rear roof.

Next we added the sliding table. This was a little difficult because the sizing has to be perfect. We measured and placed the slides but couldn't get the table to slide easily. We kept one slide placed and unscrewed the other to replace it with the table attached. That did the trick!

All we had to do next was get the plywood attached to the supports and screw on the hinges and doors. It's actually coming together.

Despite the rain keeping us from working on our back porch (aka- our "wood shop"), we still had to add the extenders for what we call "sleep mode." When we aren't driving, we will push the driver and front passenger seats forward as far as they will go, and lean the backs as far forward as they will go to give us the extra foot or so needed to sleep comfortably. We moved the project indoors and attached the extenders at the top of the unit with hinges that will fold over the cubbie doors while in "driver mode." Once we did that, we totally fit!

Now we have to move this beast!

It is HEAVY! Once we moved it into the car, we didn't move it out for at least a month, and even then it was only to make improvements! To help carry the load, we added handles at the back by drilling two holes through the support beams on each side and made a loop with some rope. Knot the rope on the inside and pull tight- viola! 

We are ready to go!