In this world you will have troubles

First of all, sorry I have been MIA on here. I have been very thankful for a month of "good health". I say this in quotations because a good month to me is most likely a horrible week for someone who doesn't have chronic health issues. But I am thankful for my "good" weeks and months! I started seeing a hematologist who is looking into the issues of my stomach. They are thinking it may actually be a condition of my red blood cells, but they need to run more tests during an "attack". My last episode was on a weekend, of course! So now I am waiting for the next one and praying its Monday-Friday from 8-5 :) haha.

During my last stay in the hospital I was supposed to have a tilt table test. This test measures your blood pressure and heart rate while you are in different positions. My cardiologist ordered it because I have been having dizzy spells where I get extremely hot, turn pale and then almost pass out. They rescheduled the test and I went today. Here is what this lovely test looks like....

I was on a table just like this, strapped down with monitors taped all over me. I also had an IV for the second part of the test where they add a medicine that acts like adrenaline to speed up your heart rate and see how your body reacts. Mom and I got there at 8am ready to go. It took forever to "prep" for the test getting IV in, heart rate monitors on, blood pressure cuff, etc. Once I finally started the test it seemed uneventful. I was just lying down on the table trying not to fall asleep. They got a measure on my heart rate and blood pressure for about 10 minutes and then raised the table to a standing position. This was the miserable part. Off an on for over an hour, I got super hot (like a feeling from the inside of my body out and like my skin was hot to touch) then I would get dizzy and disoriented. For some reason they felt the need to let this happen multiple times before they were satisfied with the results. I was gearing up for part two where they add adrenaline, but she said I didn't need part two because I failed part one so badly. Awesome. I guess? I got to go back to my hospital room with mom and finally get some food and drink. I didn't really think much of the test because I have those "episodes" all the time and it is just kind of part of my day. I learn to adjust to them, sit down until they pass, and move on. 

While we waited on the doctor, we listened to the most incredible talk by Tobin Cassels, who lost his son Toby at age 21. His talk was titled "In this world you will have troubles". He talks about how we will all have troubles at some point. Some of us now, others later. God says in John 16:33, I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!" How awesome is that verse? Whether your trouble is in your marriage, with your children, a job, school, friends, or your health, God has overcome it all. He will take care of you through your time of wilderness. Tobin talks about how we cannot control our life circumstances, but we can control how we react to them. Sure, it is easy to lash out in anger to God. Why me? Why can't I be healthy like my friends? (Or whatever you are going through) Or we can look to God in our times of troubles and praise him. Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Glorifying God doesn't mean your troubles get easier, or you aren't sad or mad. But you can impact someone else's life through what you are going through. Listening to Mr. Cassels talk was so calming and reassuring as I waited on the doctor to come back in. And I really needed to hear it....

Because I got yet another diagnosis. Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia. They are disorders of your autonomic system. What is that? Its what your body automatically does. Controls your temperature, heart rate, and blood pressure. That system isn't doing its job automatically in my body. Which is why I get super hot or super cold when others aren't. My body doesn't control temperature like it should. And why I cannot stand for long periods of time or my legs and feet go numb. Because of my Ehlers-Danlos, my connective tissue abnormality allows excessive amounts of blood to pool in my lower extremities when I am standing. So yes, for those of you wondering, the EDS and Dysautonomia are very much related. I now have to wear compression hose (toes to tummy) that are super tight and help constrict my blood vessels. Today was my first day wearing them and let's just say I will have to set my alarm an extra 10 minutes earlier each day to put these babies on! Whew! Par for the course for me, I showed odd signs of dysautonomia. Instead of my blood pressure dropping when standing, my heart rate sky-rocketed. A normal heart rate is between 60-100. Mine was 150 when standing for 10 minutes. So it is more cardiac issue than blood pressure. 

When hearing the new diagnoses, I listened and nodded my head. When she asked if I had any questions I said no m'am. When she left, I got dressed and got my things together. I wondered... am I so trusting in God that I am not phased by this new news or am I totally numb to yet another problem to add to the list? I would like to think its the first, but I really don't know. Maybe it hasn't hit me, but honestly, what would I do differently anyway? I am still going to live my life like I was and be thankful for each day. I may have one more disease, one more medicine to take, and one more specialist to see, but I love my life and I am thankful for everything and everyone in it. We all have troubles, but God has overcome it all! AMEN!

xoxo

Riley

Patience and Perseverance

The last two weeks have been ROUGH! I was discharged from the hospital late last Monday night, but still had a fever and elevated white blood cell count. I then spent everyday of last week in my doctor's office taking more blood and running more tests. I was lethargic, exhausted, and just done with all of this mess. I continued to have a low grade fever and my white blood cell count would be up one day, down the next, and up again the day after that. The white blood cells indicate a bacterial infection, but the source is still unknown. Today, I started to feel a little better and even went to get a haircut. I went to lunch for my grandmother's birthday and felt like I was on a roll. That was two activities, when the most I've done the past two weeks is lay in bed or get up to do small tasks. I even stayed home all weekend sleeping while David went to the lake with his family for his grandmother and dad's birthdays. I hated to miss it, but my body was telling me no. After lunch today, my stomach started to get distended. I have still been having sharp lower abdominal pain that comes and goes. When it comes its a doubled over, can't stand up type of pain. I tried to take it easy the rest of the afternoon, but my stomach kept getting bigger and bigger. By dinnertime I couldn't button my pants and my skin was so tight it hurt. I finally gave in and went to MD360, our urgent care facility. They started an IV and assessed my pain, the distention, and the fact that I came in with a fever. The doctor's initial thought was appendicitis. She called the ER and explained my symptoms and they wanted me to come straight there...by ambulance. Ugh. That was no fun at all. When I got to the hospital they did a surgical consult and ordered a CT. They also thought it was appendicitis. Well, unfortunately, that would be WAY too easy to diagnose and to treat for my body. The CT scan showed no sign of appendicitis or anything abnormal. So I once again was left with a fever and white blood cells in my urine (but not a urinary tract infection either)

In a nut shell, I have been in a good bit of pain and discomfort, I've had low grade fevers, 5 confirmed infections one after another, and a mysterious bacterial infection that they cannot locate. The unknown is literally one of the worst feelings. Where is the infection? Is it going to go away on its own? Why in the world can they not find it? I really had my hopes up last night that this was it. The grand finale and the answer to all of the questions. But I was yet again, disappointed and frustrated. I hit my breaking point and broke down in tears after I left the hospital.

On Friday, I have an appointment with endocrinology and cardiology to see if they can possibly pinpoint the infection. We do know that my cortisol levels are very low (endocrine) and my heart rate is extremely high (cardiology). These are small clues that may lead us in the right direction, so I am that seeing those specialists will give some insight into the situation. God is sure testing my patience and my perseverance. My prayer is that they will find the source of the infection SOON. I am ready to tackle this and move on. They have tried several antibiotics (oral, shots, and IV) and none have worked to break the cycle of fevers and high white blood cell counts.

I will update you after my appointments Friday! Please pray for patience. It is so hard to wait and wait and wait when my body feels so out of whack. I know that this, yes even this, is part of God's plans for me. One day I will look back and see where it fit into His wonderful plan and how He used it to glorify His name.

XOXO

Riley

Infections Galore!

Remember when I went to the beach the last week of July? I had a really swollen lymph node in my neck and went to urgent care. They treated me for an ear and sinus infection with antibiotics and steroids. So grateful to them, because we later found out it was also "mono". I am always tired , but the fatigue I have been feeling lately is something crazy! It was good to find an answer. Then once the staph popped up on a blood culture I started antibiotics again. I'm thinking.... "I dare you infections to get in this body now! I am armed with a ridiculous amount of antibiotics and steroids. And then came this past Friday. My bladder and left kidney were really hurting and I got up to go to the bathroom way too many times. I thought I would ride it out through the weekend and if it was still bad, go back to the doctor on Monday. Saturday morning came bright and early with David donning his game day Clemson attire from head to toe to coolers! I had already backed out and told him to take a friend. I knew with all that I've been sick, a game with thousands of people in the heat of the summer wouldn't be a good idea. Once he had left I drove myself to urgent care. I wanted him to have fun so I didn't tell him until later. Urgent care said there were white and red blood cells in urine which meant an infection somewhere. He put me on Bactrim and I was on my way. I ran to McAlisters to get a spud (love this when I feel blah!) and filled up so I could take the antibiotics. David came home early from the game to me sitting up in bed struggling to breathe. "I think I'm having an allergic reaction to the medicine!" I called urgent care with the symptoms of my throat closing up, trying to breathe, and a racing heart rate. She gave me two options: she would send for an ambulance or David takes me immediately to the ER. So there we went. I got to St Francis Eastside ER closest to my house and was immediately whisked away by a team of 6 doctors, PAs, and nurses. Within seconds, I was given an epi shot, started an IV, and three different meds put in my IV. Honestly, one of the scariest things ever for me! I was terrified and crying because I couldn't breathe! After a few minutes my throat swelling started to lessen but my heart rate didn't. After hours of observation, I spiked a fever and heart rate still was super high. This gave me a straight admission ticket to the dreaded upstairs. I am now an impatient being monitored. I'm hoping to break out of here later today. Good news is, there's a nice tv and the room is really big. (Not that I can wander around with this IV pole in tow!) however, the pull out bed doesn't exactly fit a man. Poor David is hanging off the end! He's amazing! 

Waking up Friday and feeling that small ting of discomfort in my bladder, I prayed it would go away quickly and quietly. I have had enough infections this month to last me quite a while. Right, God? Then I remember this verse: 

"Trust in The Lord with all your heart and lean not on your own understanding" Proverbs 3:5 

There is a reason God wants me to be chronically ill with lots of hospital visits. Sometimes, I do see little winks from God that I was in a place for a reason. I always find myself ministering to a doctor or nurse taking care of me. Not in a pushy way at all, just praying in front of them and assuring them I know I'm going to be ok with God on my side. Even when I pick up my many meds from Walgreens weekly (they know me by name) one will always say I hope this works or I hope you feel better. And I reply, "I'm praying it will!" Just little nudges to those who may need it. 

When I knew...

Football season is HERE! And it got me thinking of "when I knew". When I knew I was sick...

My freshman year in college is when I knew. I had two awesome roommates from Maryland that I didn't know prior to moving in and we clicked instantly. We did a lot together and I also had a lot of friends from home at USC too. I was always complaining about walking to classes across campus, and I would leave super early sometimes just so I could drive and park nearby. All of my friends walked and never thought anything of it. That's just what everyone did. That distance hurt my legs SO much and I thought surely it was the same for others. One day I was walking to class with my roommate Caitlin and I just collapsed on the side walk. I couldn't feel my legs and couldn't stand back up. EMS was called and they did a full neurological work up and nothing showed up. They thought maybe it was the beginning of MS. I prayed it wasn't.

During football season, I REALLY knew I was different. I couldn't handle day games because of the heat. My body temperature didn't regulate like anyone else's. But looking around and seeing other people sweating I thought everyone else feels this way right? No. No one else was suffocating from the heat with their blood pressure raising and dropping. If the group of girls I was with wanted to go to another tailgate way across the stadium from where we were, it was no big deal. But to me it meant aching legs, swollen feet, sore muscles, and clicking joints. No one else seemed to have to "think ahead" about little tasks like walking a distance, or being in the heat, or going up the stairs at the stadium. Thats when I knew. That is also when I decided not to drink at games. Or at least not much. It was the only thing I had control over. I had no idea if my legs would lose feeling and I would collapse, but I sure knew I wouldn't pass out from being drunk. I became the DD and enjoyed as much of the games as I could. I definitely didn't have the college experience like I envisioned, but God had a different plan for me. On the days when I was stuck in my dorm or apartment looking out the window at the loud, drunk, game day fans, I thought...WHY? Why are you doing this to me? And I always went back to Jeremiah 29:11 "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." I didn't know what His plans were and what my future would be, but I am married to an amazing man, have the best family in the world, and a great group of girl friends. Looking back, it doesn't matter how many home games I went to, or how long I stayed. Im pretty sure no one even remembers haha. What matters is I made the best of the situation and even graduated on time with honors. "On time" was a big deal because I had SIX surgeries in the 4 years of college and still managed to get all of my work done in time. Even if I was going to classes with crutches! I made great friends that I will always keep in touch with, and I still had fun!

When you are in a tough place in your life and you think "why me?" Always know that God has a great plan for you. It may take a while to see it, but you will. :)

My labor day weekend was good. I was able to do some things at the lake, but not as much as I wanted. I was really really tired and there were a lot of stairs. The walk from the dock to the house was super steep, so after one time, I wasn't able to go back down to the dock/lake. But I am still able to have some fun!
This week: I have appointments with Rheumatology, Cardiology, and my Internist. Hoping to come up with a good plan to keep me as well as possible! Will keep you posted.

(Before the UGA Clemson game tonight) David isn't smiling that big anymore! Go Dawgs! Love you Dave :)

Lord get me through this storm

As you know, I've had a rough time lately with the EDS. I am pretty much fully reliant on my cane to walk without falling. My left arm and leg have a lot of muscle weakness and sometimes I have to tell my left leg, "Come on. We're walking. Work with me!" Both left arm and leg are noticeably smaller than the right side because of the atrophy.  I started on some new medication and it seems to be helping a lot. I am not a big fan of taking meds so I was very stubborn to start taking anything, but I didn't have much of a choice. The pain was there all day every day and it was hard to get anything accomplished.

A few weeks ago we had our big family vacation at the beach with all of my mom's side of the family (Over 30 of us!) I love being with my family SO much, but this time felt a little different. I know the pain meds do alter my mood some, but I often felt frustrated and slighted watching my cousins do whatever they wanted without much thought. Lay out on the beach, jump the waves, go play putt putt, go for boat rides in the canal, etc. Every one of those things required much more for me. How long can I stay in the heat? I need a ziploc bag to go around the bottom of my cane so it doesn't get covered in sand... I can't get my medicine patch too wet so I shouldn't go swimming... I can't walk very far so putt putt is out of the question. I am SOO very thankful my family is healthy, but I couldn't help those jealous feelings of wanting to do everything they were doing and not have to think about if I was able to or not. 

A few days into the vacation, my doctor called about the MRI of my cervical spine. He was thinking that the dizziness, and one-sided weakness and numbness may have something to do with that area and wanted to check it out just to be safe. Usually, with tests, I'll get a call from the nurse who leaves a message "just letting you know that your scans/blood work were normal. Call us if you have any questions". This time I woke up to a voicemail from the doctor himself saying "I'm calling about your MRI results. I'll try you back in a little while." My heart sank to my feet. About half way through breakfast, he called again and I walked away from the noise to answer. He said my c spine was covered in osteophytes (like bone spurs) and they were causing narrowing in my spinal column. It was a pretty safe bet that these were causing a lot of the symptoms. He told me I would hear from a neurosurgeon soon about making an appointment. On one hand, I was panicking and silent tears started streaming down my face. On the other hand, I was glad there was at least an answer and maybe a fix to the problem. While I was dealing with the shock of the phone call, I was also on my way to urgent care at the beach. I had a swollen lymph node behind my ear, and some sinus symptoms. I mostly wanted to double check the lump behind my ear. I ended up having a full blown sinus infection that was fairly masked by the pain meds I was on. After a shot of steroids and a shot of antibiotics, I started feeling back on track. (What an exciting beach week so far! Hah!)

After the first few days of the vacation bearing all of this weight of more medical things, my mom decided to find a healing service at Pawleys. Wednesday morning, I went with my parents to this adorable, tiny chapel to just pray and feel God's presence. We were four hours from home, in a chapel with 9 little pews on each side, and two rows in front of us were two of my Bible Study leaders. WOW! I felt this huge sense of peace. God, how did you know I needed some familiar faces? Especially two women who help me in my walk with you! The service was beautiful. A few songs, communion, and a lot of prayer. After the service, the pastor laid hands on me and prayed over my physical, emotional, and spiritual health. Its truly amazing what a mid-week healing service can do when you are feeling down.

Once I got home from the beach I had several appointments. One was internal medicine. I had been having fevers for a week or more, but no obvious symptoms otherwise. She ran some bloodwork and said she would get back to me. The neurosurgeon appointment was uneventful. The ostephytes are definitely pressing into my spinal cord and I got to see the MRI. Its crazy how you can see where it is pushing into the spine. (The places that look like holes...bigger ones toward the top then smaller)

Friday we started to move our business Two Sisters Embroidery to a bigger retail space. EXCITING! Mid-way through the move, the doctor called and said my white blood cell count came back elevated which means there is indeed an infection. Since it isn't in any obvious place I needed to go get blood cultures done at the hospital. Saturday night I was tucked in bed and I got a call from my doctor again. (Never a good thing when he or she calls after hours!) My blood culture was growing bacteria and I needed to go to the ER immediately to start IV antibiotics. UGH. I called my mom, got out of bed, and did the usual ER routine. (Grab socks, a jacket because they freeze you in there, a long charger cord for phone, and something to do)

We are all moved in our new space and I am still fighting off the infection (which ended up to be Staph) I am trying to do as much as I can, but my body is very weak from fighting so hard. God knew I would have a crazy week, so my EDS symptoms have been very manageable this week! Thank goodness :) Though I am still sick in other ways, He still only gives me what I can handle. (And He sure thinks I can handle a lot haha)
I can do all things through Christ who strengthens me!

xoxo
Riley

In a slump

Hey! I know it's been forever since I've posted. I mostly kept thinking, let me get to feeling better and post a great update. Unfortunately I'm going on 7 months of the same pain that just keeps getting worse. I spent another day in the hospital and have had lots of doctors appointments to figure out pain management. I'm just in a slump. In the pits of the disease. Every day I wake up and my entire body hurts. Mostly my left rib cage in the front and back and my left arm. But eventually, once I start doing anything, my hips, knees, legs, and feet start to hurt as well. I've had to really cut back on activities. And no I'm not talking about things like extra curricular fun activities. More like only going to the grocery store when I think I can walk that far and lift the juice and milk off the shelf. Or planning something around when I can take a nap to make it through the day. I hate making plans ahead of time because I'm always afraid I won't feel good and will have to cancel. It's awful to think that. How I would love to plan fun things in the future without wondering how I will feel! It's so hard for some people to understand why I use a wheelchair or a cane sometimes. I don't look sick. But my insides are slowly falling apart and I am exhausted. I try to do fun things with my friends, smile for pictures...knowing they are going straight to social media. So from the outside I look fine. And I guess that's good. I don't want to look sick. But I also want everyone to understand what's happening on the inside. I could never explain it this well so watch this video of "life with ehlers-danlos" and keep the prayers coming! I am so thankful when I have good days, but I do feel slighted when I have weeks of bad days in a row. And that's where I am now. 

I am so thankful for my amazing husband who rearranges the fridge shelves so I can lift things, alters anything in the house to make it easier for me, and just loves me unconditionally. And Kappy girl who is the best "therapy dog". She knows when I need to rest and naps with me any time of day! And of course my mom, who also has EDS and is in remission and is my rock. I don't know what I would do without her! 

Please keep my friends Tricia and Lindsey in your prayers as they are both fighting for normalcy. Tricia with chronic illness and Lindsey with colon cancer. I love having them to lean on and talk to. 

Xoxo

http://www.youtube.com/watch?v=8Q4juCB2GeU&sns=em

One week to go!

Well...it's a week away! Things are getting real. We bought the wedding bands, have had umpteen meetings with the vendors and planners and have signed up for dance lessons. (For David's sake haha) 

I am still trucking along. There are days when I have a lot of energy (which is probably a normal amount for most people) so I try to get as much done as I can. But then sometimes I pay for it the next day. Yesterday I had two bridal sessions with the photographers, a few appointments, and tried to work at the store some. By last night I knew I had done too much. I woke up feeling like I've been run over by a truck and had a migraine. But thanks to good meds I will bounce back and just take it easy today. It's so hard though! It was surreal seeing myself in the dress and veil. I can't wait to wear it next week. 

My mind is racing with things that need to be done for the wedding and for the business. We are participating in a huge event next week. I know it's the week of the wedding but it wasn't something we could pass up. One of our wholesalers has a big warehouse sale in Greenville twice a year called Bargain Chicks, and they asked us months ago to be the monogrammer for the event. Thanks to some awesome employees and friends who are willing to help, we think it will be a smooth week. 

I am also excited to celebrate my "golden birthday" tomorrow. I'll be 27 on the 27th. Woohoo! Kind of bitter sweet. It is my last birthday as a Haskell. Next birthday I will be a wife! And a Dannelly. Crazy!!! I am praying 27 brings good health and smooth sailing. (But just in case we did buy medical insurance for our honeymoon. I don't have a good track record so it's the smart thing to do!)   I can't thank you enough for all of your prayers lately. They are definitely felt and most definitely working. Through the struggles and sufferings of the bad days, I am able to be much more thankful for the good ones. I rely on God so much because I know he's the only one who can get me through those times. 

Much love 

Me -my last post as a 26 year old haha

A healthy day

Today was a good day! A healthy day. David and I had the privilege of going to the Masters today. I kept insisting he take his dad or a friend so that he could stay all day and have more fun, but he wanted me to experience it. I had never been! So we went today and stayed just as long as I would last. For healthy people, planning things ahead of time is no big deal. For people with chronic illness, we never know what each day will be. I am blessed today was a good one. I wake up each morning praying my legs will work (sometimes I can hardly stand or walk on them) that I don't get a migraine, and that I can last all day with whatever the day brings. I fell asleep last night in the middle of my prayer, but He heard me! I woke up and my legs were cooperating and I felt good. The masters was absolutely gorgeous. It's nothing anyone could have really described to me either. It's something you have to experience and I'm glad I did. We followed Greenville's Bill Haas, shopped for souvenirs, and I ate one of their famous egg salad sandwiches. Delicious! We stayed about 4 hours and then I knew I was on borrowed time. My legs started to feel like jello and my feet were swelling. So we went to the car, feeling like I had at least gotten to experience it all (even if it was compacted into a short amount of time). I also had to save up some energy to see my little sister go to her first prom. If I had stayed any longer at the Masters, I most likely would have been done for the day energy-wise. It's all about balance for me. Deciding what I can do each day and how much energy to save up for certain things. I'm so glad I was able to see Langdon before prom. I was the proudest big sister. She looked so beautiful and grown up. 

I'm pretty sure she looks older than me here! I was sweaty and hot from the long day and she looked like a model! Speaking of my sister, she has been a champ through all of this. She has watched me go through 13 surgeries, a ton of hospital stays, and many days where I can't get out of bed. It definitely affects the whole family and she often gets less attention during those times, but she takes such good care of me. She never complains and is so helpful. I am so happy for her to experience her first prom tonight....and I'll be waiting up to get the call she made it home safely :) All in all, I am thankful for a pain-free day spent with my wonderful fiancé and family. 

24 days to go...

There are 24 days until THE BIG DAY! This past weekend was supposed to be my bachelorette weekend in Sea Island, Georgia hosted by one of my best friends, Morgan. Unfortunately, after being in the hospital for 6 days and still not feeling any better, we had to rearrange the plan. I didn't want my health to get in the way of one more thing, so we continued with the date of last weekend since it worked for most everyone, but we stayed in Greenville. The great thing is, we stayed at a hotel and didn't even feel like we were here! I spent 3 days with my amazing cousins and friends who went above and beyond to make me feel special. I am beyond blessed with family and friends who love me. My cousins picked me up in their car decked out in crazy bachelorette stickers, flags, and such. My artistic friend Sarah decorated the hotel suite with the most incredible touches, and She, Ashley, and Danielle had everything planned for the weekend. My sister and future sister-in-laws joined us too!

They were also great about pacing the weekend so I could still take naps and rest in between activities. By Sunday night I was tired and the pain was still so bad (had never gone away). I decided I would use Monday to pray about what the next step would be. I wasn't getting any relief from the medicine for nerve damage, so I didn't think that is what it was. Monday morning one of my Bible study leaders suggested we call Dr. Young, a wonderful surgeon here in town. My first thought was, ok, but it will take weeks to get in to see him. Later that afternoon, my mom called Dr. Russell, who did surgery on my hernia back in 2005 to see if it was possible that the hernia has broken through the surgical clips. He is a dear friend and goes to church with us and always looks after me. He didn't think it was likely that the hernia was back, but he said he would call his friend Dr. Young to see if he could work me in. As God had planned it, it was the same Dr. Young my leader had suggested and he saw me immediately. He was so thorough and did some more tests and exams. His findings were that the cartilage/ligaments around my left lung were torn and that was causing the severe pain. It is extremely unlikely that this would happen in a "normal body", but with EDS, it is not as uncommon. My connective tissue is already so weak, that it doesn't take much to tear. The reason it has been so painful for so long is that every time I breathe (which is a lot haha) it would expand the torn tissue even more. There is obviously no way to "rest" the lungs, so I just need to take it easy and not put too much stress on my body. He also prescribed two meds to help reduce inflammation and calm everything down. Once it gets closer to "the big day" I will go get steroid injections in my rib cage area to really numb the pain so I can enjoy the wedding and honey moon :) I am so thankful for God's plan today in putting Dr. Young in my path. After we finished the appointment, he sat down, held my hand and PRAYED FOR ME! He prayed for my health and my marriage, that God would bless them both. How awesome is that?!?! God is good! The best news of all....it is the first time in almost 4 months that I have felt a hint of relief from the pain! The meds are already working :) :) :)

Thank you all for your continued prayers! Keep them coming. I am praying this pain starts to cease sooner than later. Also please keep my friends Lindsey and Tricia in your prayers as they are both facing health issues as well. XOXO

The Zebra

Did you know? The zebra is the "mascot" for Ehlers-Danlos Syndrome. In the medial world, a zebra is a rare condition or disease. Doctors are prone to diagnose and treat the obvious issues, which leaves many patients with rare conditions being misdiagnosed.

Because EDS is a connective tissue disease, it affects your entire body from head to toe. Think about all of the muscles and joints you have. It's a lot! Some, you don't even think about...gall bladder, stomach, esophagus, etc.

The past few months, I have had a lot of left flank pain in my back that sometimes wraps around my side to my left abdomen. With EDS I have a high tolerance for pain, so I am able to ignore things for quite a while. The pain came on suddenly and out of nowhere so I tried to monitor it and see if there were things that made it better or worse. After several weeks the pain started to get worse. After I would eat or drink I would get this awful stabbing pain in the back of my rib cage. It felt like I was being punched in the ribs from the inside out. I went to the ER late one night just to make sure there wasn't anything terribly wrong. The did a CT scan looking for kidney stones and then gave me some pain medicine and sent me on my way. Unfortunately this happened two or three more times. Same pain. Same protocol. No one was willing to dig deeper to actually find out where this pain was coming from. Sure, we ruled out kidney stones, but that is only one of a lot of possibilities. As the pain started to get worse again, I decided it was time to go to the Mayo Clinic. I am getting married in a month and a half and I can't be doubled over walking down the aisle!

Mom and I flew to Mayo the beginning of March. We call it our Medical Mecca. It is simply amazing there. Here is a picture from the plane. That is snow covering Minnesota. Our first stop was OBGYN since they had done my most recent surgery the end of November. The doctor's suggestion was to see gastroenterology and urology during our visit. Because the pain was so much worse after eating and drinking, I decided to start with GI. We spend the entire week doing CT scans, ultrasounds, MRI, a colonoscopy, and an endoscopy. It is safe to say my GI tract has been THOROUGHLY checked out :) The good news is, the colonoscopy was perfectly clear with no explanation of the pain. The endoscopy did show inflammation of the esophagus and stomach (which made sense because the pain was in that area) No matter what I ate or drank, as soon as my stomach would expand even a little bit, the pain would get worse. So we had one piece of the puzzle. By Friday it was time to go home. I had my first bridal shower that night and I really wanted to come back home for it and just be normal! (Plus it was a couple's shower and David was super excited about opening presents) I figured I would pick up where we left off at Mayo at some point in time. That time came sooner than I had hoped. The weekend brought even more pain and all I did was rest, eat small meals, and rest more! By Tuesday I was having such severe pain that David had to drive me and Kappy to my parents' house to spend the night. (who doesn't want their mama when they feel that sick?!) I stayed up all night sweating, rolling around in a ball and rocking back and forth on all fours. That bought me a ticket to the ER the next morning. Wednesday morning I ended up being admitted to the hospital where I would get around the clock care and more testing to figure this out.

So that's where I am now! Sadly, I had to miss my church retreat this weekend while I am stuck in this hospital room. I know God has a purpose for me in here and I try to glorify his name to whomever I can. They are ruling out more major issues with my kidneys and urinary tract, but the Ehlers-Danlos has just really taken a toll on my poor insides! I have had a lot of quiet time to myself and have gotten in some great prayer time.
Please pray for me and pray that the doctors find this zebra causing the pain. Also please pray for two of my friends Tricia and Lindsey. They are both going through health scares and have little ones and husbands who want them home so badly! I know God is putting me through these trials for a reason, and I will be a better person for it. As long as I keep my attitude positive,  with God's help, I can do this!

Love you all!
Riley

Long Overdue Update

This is her favorite place to sleep...on my face! 

God is Good! All the time!

I realized I have totally neglected my blog lately. There has just been so much going on in my life! For one thing, I got a puppy. And she's absolutely incredible. After my last surgery in November I was really feeling down and thought maybe it was the right time to get a puppy! So I surprised David and got Kappy, a King Charles Cavalier Spaniel. She was such a healer. She would lay in bed with me all day long while I was recovering and all she wanted to do was get as close to me as possible. It definitely helped the healing process. She goes to work with me everyday and brings a smile to so many customer's faces. She is so happy to see everyone and is such a love bug. She thinks she is a baby and likes to be held over your shoulder or cradled on her back like an infant (while rubbing her belly of course)

Christmas

 The next thing that happened was right after Christmas... and it was the BEST DAY EVER! David proposed!!! We went to the Biltmore House and his sister Elizabeth was hiding in the bushes taking pictures of the whole thing. 

 

I feel incredibly blessed and wanted to share all that has happened since the surgery the end of November. God is so good! David and I are getting married May 3rd and we are SO excited.  I will keep the updates coming this time :)

xoxo