Fostering... the good, the bad, and the goodbye

It has taken me a while to write this. It was too painful to relive... to talk about or to write about. Our sweet foster baby was moved to another home. I have heard from so many people that the reason they could never do foster care is because of the goodbye. So I wanted to tell you my experience with it. This was one of my biggest fears. How do you pour your life into a child, love them like your own, and then tell them goodbye? When “baby” came to us, she was so tiny. Only 7lbs and so new to the world. For almost 5 months we loved this girl like our own child. We watched her do many “firsts”,  worked with her daily on developmental milestones, and relished every coo and smile. She was a part of our life. I didn’t see our future without her in it. Of course I knew it was a possibility she would only be with us temporarily, but if you think that way, how can you pour your whole heart into them? The day we got the call until the day she left (48 hours) I was in a downward spiral. I took so many pictures, packed her a bag, and cried more tears than I thought was humanly possible. Then as quickly as she came, she was gone. I shut the nursery door and have barely opened it since. Her clothes are still in her drawers, diapers still on the changing table, and I left a few things unwashed so I could still remember her smell. 

Yes, all of that sounds painful and you probably assume I’d never want to experience that again. But I wouldn’t trade it for anything. What we were able to give her in those 5 months shaped her in a way that she desperately needed. God loved us SO much that he sacrificed his own child to die for us. If he can do that for us, I know I can show love to these children even if it causes me heartache in the end. Selfishly I wouldn’t want to feel this pain again, but it’s not about me. It’s about the kids. They need someone to show them love even if it’s for a short time. Please pray for “baby”, as we don’t know what her future holds. And pray for Anna Bates as she feels a huge void without her side kick and best buddy. If you have ever thought about fostering, I am happy to talk to you about it. And if you don’t feel like that’s your calling, you can always help a family who does foster. I can’t tell you how amazing our community was when we first brought her home. We had meals brought to us, gift cards sent, and so many times I’d open our front door to a box of diapers and wipes with a sweet note. I even had a friend in Dallas send formula through amazon! It wasn’t just us loving her. It was our family and friends as well. She may never know how loved she was in those 5 months, but we were called to be the hands and feet of God and that’s what we did. What he calls us to do doesn’t always make sense and sometimes it is out of our comfort zone. And sometimes.... it doesn’t turn out like we had planned. But I have to trust that His plan is bigger than mine. 

Love y’all ❤️

Home stretch!

Before I formed you in the womb, I knew you. Jeremiah 1:5

Dear Anna Bates,

We have prayed for you before you were even in my tummy. You are such a miracle and we cannot wait to meet you. When we were trying to have a baby, my good friend Lindsey was there for me along the journey and even gave me a special necklace she wore when she was trying to get pregnant with Lilla. It was so special to me. When we went through the months of fertility treatments she checked on me every day, even though she had a much bigger battle she was facing. She had colon cancer that had spread to a lot of places and was very sick. She was the most amazing warrior I have ever met and she met each day with a positive attitude and fighting spirit. She was SO excited when we found out that the IVF worked and we were pregnant. I told her I wanted you to have an incredible role model. Someone to look up to and live your life like she did. One day we were visiting together and I told her your name would have Bates in it. That was her maiden name. She was so excited and honored. When I was 9 weeks pregnant, sweet Lindsey passed away. Her body just could not take the cancer anymore. At 14 weeks we found out you were a girl! Anna is a family name from my great grandmother, aunt, and cousins, and Anna Bates felt like the perfect name for you. I can't wait to tell you all about Lindsey, your guardian angel. You have had so many people praying for you and they cannot wait to finally meet you. 

I am 37.5 weeks now...in the home stretch! You are so active and wiggly. There's rarely a time of day that you aren't kicking, flipping, dancing, or practicing your golf swing. You are already over 6 lbs and very strong! Can you tell how excited we are? Your dad already talks about how you are going to be a daddy's girl and how he will give you anything you want. We'll see about that :) Kappy sniffs all of your baby clothes and loves to walk in your nursery to check on things.

For those who have seen or talked to me lately, you know how ready I am! I know most everyone feels this way at this point in the pregnancy and things get so uncomfortable! But with the Ehlers Danlos, my joints and muscles were already loose/lax, so adding weight and the stress of the pregnancy has been really really hard on my body. It's the first time I've had hip pain since my double hip surgery 10 years ago and my back pain has put me in the hospital several times this past month. Sometimes it just gets unbearable. Other times I just sleep a lot and try to get through one more day. I see all of the doctors in the OB group I go to, but there are a couple of them who really seem interested in the EDS and how it does and will effect me during pregnancy and delivery. 

Several weeks ago the docs said "any day now" because of how quickly I progressed dilating and being fully effaced. We had our bags packed and ready and waited anxiously. Then everything slowed down and Anna Bates decided she would stay put a little longer. It's been hard waiting and in so much pain. Please pray for a good delivery and for the remainder of the time to be easier on my body. I'm exhausted! 

Much love

Riley 

Second trimester update

Sorry it's been a while! We found out that the baby is a GIRL!

We are so excited!!! My hyperemesis gravidarum seemed to stay pretty bad into the second trimester and started to get worse lately. I was throwing up over 40 times a day and not able to eat at all. I was put on home health and it has helped a lot. I have a zofran pump in my stomach with a catheter that I carry around like a purse. I get home IVs that run for 2 days straight when my levels are off. I'm still just eating foods like jello, potatoes, potato soup, and breads. But the zofran pump has helped me stop throwing up so much. Home health checks in on me everyday and it's so nice! Baby girl is doing great despite all of the craziness and I am 17 weeks. Right now I spend most days at home in bed, but I've been able to go out here and there which has been great. Wednesday is my 29th birthday, so I hope I can get out and enjoy it! Here is my latest ultrasound.

 She seems to be very laid back and comfy in there :) I am already learning the sacrifice of a mom! As bad as the pregnancy has been, I would do anything to get her here safely. Please continue to pray for the baby and that my health improves. I want so badly to just enjoy the pregnancy. The power of prayer is great! 

For this Child I have Prayed!

We are so excited to announce the pregnancy to everyone! I am 12 weeks due September 30th! We told everyone at 8 weeks and I know that is early. BUT here are our reasons. 1) David is so excited he tells everyone anyways 2) Ditto to my mom 3) We need prayer and support throughout this journey through whatever the pregnancy brings!

My main reason for writing this post is this: Anyone who struggles with infertility sees their Facebook newsfeed as a giant pregnancy announcement. It seems that this season of life for us brings a lot of that, which is so exciting. But if you have been trying to get pregnant, it seems like "why is it so easy for everyone else?!" I'm here to tell you that behind our announcement was over a year of infertility, heartache, medicine, shots, and a lot of waiting.

Before David and I got married, we knew we would have trouble getting pregnant. We discussed it in premarital counseling and a lot with each other. To get deep, I had not ovulated in over a decade. That's right! 10 years! Why? I am not totally sure, but the doctors think it has something to do with the part of my brain that tells my body to release hormones etc. My hormone levels were all out of whack and without ovulating you just can't get pregnant! As soon as we got married, we saw a specialist and talked about our options. For a year I was on lots of medicines, hormones, shots, etc trying to get my body to cooperate. No luck! Last summer, after a lot of prayer, we decided to get a second opinion from PREG (Piedmont Reproductive Endocrinology Group) cool name huh? We felt so informed and optimistic in the initial meeting with Dr. Nichols that we jumped on board immediately. I fell in love with the staff there and felt right at home. It didn't take long to get my levels where they needed to be, and we decided to try IUI (Intrauterine insemination). That was this past fall. I was SO excited. But one morning in early November I woke up to the most intense cramping and pain ever. I ran to the bathroom and it happened. It was over. Just like that. It was the most physically and emotionally painful experience. I sat in the bathroom and cried all day. Why God? I just want to be a mom! I have prayed for this for so long.

We decided after that to jump to IVF, In-vitro fertilization. The big guns! It was more than we could afford, but after talking to my parents, they decided that would be the perfect Christmas gift. I could not be more thankful for that gift. On Christmas Day we started the meds.

This has been our counter since then. Oral meds, shots, needles, sharps containers, etc. David has learned to give me shots and has gotten very good at it (most of the time). After a few weeks of intense meds, it was time to retrieve the eggs! They put you under anesthesia since it is a painful procedure! I wore some superwoman socks a friend gave me because I was sure feeling like it that day! I felt so at peace with God's plan for us and really gave it to him that day. 

We had 20 eggs, and 12 of them fertilized. Every couple of days the embryologist would update us on our embryos. After 5 days we had 4 great looking "blasts" to choose from. We opted to put two in to have a better chance of getting one to stay. (PS it is just one) We froze the other two to hopefully use in the future. Science is so amazing! After the "transfer" came the dreaded "2 week wait" as it is commonly called in the infertility world. It is the 2 weeks after your transfer until you see your doctor to tell you if it was successful or not. Our appointment was on a Monday and of course the Friday before, it snowed. We were stuck at home and I was SO anxious. So I took a test. I closed my eyes and prayed, please Lord let there be TWO pink lines. And in his perfect timing, there they were. The 2 lines I had prayed for soooo long to see. And man, they were beautiful! 

I started sobbing and thanking God over and over for this gift. Then once I pulled it together I took the test to David. He looked at it for what seemed like forever and then said IT WORKED?!?! Yes! Then he had some funny questions like why are the lines pink? It's not already a girl is it? After hugging and crying he ran to the store for the usual Greenville snowpocolypse items: bread and milk. And he came back with the most beautiful pink and blue flowers and arranged them himself in a vase. He was so excited!

On that Monday we went to PREG and got the blood work done and they confirmed and congratulated us. It was the best feeling ever! Then came some more waiting and more praying until the first ultrasound. At 5.5 weeks I started spotting and I literally lost my mind. I was shaking and crying and begging for it not to be over. Luckily I had my appointment that very morning and my mom drove me (since I was a hot mess and David wasn't home) They were so sweet and did an early ultrasound to calm my nerves and there it was! All safe and sound in my uterus. It was "normal" spotting, which totally didn't seem normal to me at the time! A week later David and I went for our next appointment. We saw the little baby in there and its tiny fluttering heartbeat. And to our surprise we HEARD it too! It was so surreal. God had created a tiny human being and it was now growing inside of me. How amazing is that?! There is nothing more miraculous. We go back Tuesday for our "graduation appointment" where we leave PREG and move on to a regular OB. I might cry. I probably will. They have been like family to me and helped us fulfill our dream of being parents. I will forever be grateful for everything they did for us. 

For those wondering and are afraid to ask... We did do genetic screening before hand and were surprised that I did not carry ANYTHING! So we are praying this baby is as healthy as his or her daddy :) I will be very closely monitored throughout the pregnancy, but I know that God will see me through this. As for when the baby comes, I have a lot of help from family and have already researched a lot of baby equipment that will work well for me without lifting a ton and bending over too much. It's amazing what is out there!  Sorry for the long post, but we are SO excited and feel so incredibly blessed. I wanted to tell the whole story because I know so many people pray for my health and like to keep up with things AND maybe this will touch someone who has been struggling to get pregnant. Keep the prayers coming! Love you

Riley

Welcome to Cleveland!

Hello all! I have tried to respond to messages today, but this is always the easiest way to answer everyone's questions and keep you updated :) I will try to answer all of the questions I've gotten too. My mom and I came to the Cleveland Clinic yesterday for an appointment with Dr. Boissy, an incredible neurologist here. I had a pretty bad relapse recently with a lot of spine pain, leg weakness, a foot drop (and tripping on that foot) and just a lot of weird neurological symptoms. Because the relapses have gotten worse in nature, it was time to see a specialist in neurology. I was going to go back to Mayo, my "usual," but we found Dr. Boissy and she is the best in her field, and when I saw her cute picture I just felt like she was the one. The current issues that I am facing are neurological and from the waist down, mostly affecting my legs and feet. I cannot lift my toes, walk on my heels, and have different sensations on my legs than I do my arms.

The difficult thing about the neurological symptoms is trying to differentiate them from Ehlers Danlos or POTS symptoms. And try to see what is related and what is not. We are still sorting that out, but Dr. Boissy was a huge help. She spent two hours with me taking a ton of notes and making a plan. Unfortunately, the way the insurance system works, these tests need 5 days to be pre-approved. I chose to go home and not wait 5 days in a hotel room in a city far away. So I am going home tomorrow, will do the testing in Greenville, and send them all to Dr. Boissy. Once she reviews them and gets a good idea of what the next step is, I can come back. She also wanted me to see the POTS and EDS docs here to get their opinion on things, but there is only one doctor for each of those (since they are so specialized), and of course they aren't in the clinic Mon-Wed. So again, I didn't want to wait around and hope to get in later in the week.

For those who have asked about Greenville doctors.... they are amazing. I love them all and they are good at what they do. But POTS and EDS aren't common, and for most of the doctors I am their only patient with those. When I come to Cleveland Clinic or Mayo, they see hundreds of patients with these illnesses and have much more experience with them. My docs at home always tell me when things get worse to go elsewhere, just because they are not equipped to treat me as much as the clinics are. Plus at home, I have to wait weeks or months in between appointments just to get in to each area. For Ehlers Danlos, I see rheumatology and vascular, and for POTS I see neurology and cardiology. Lots of specialties and each one only treats their own area. The clinics can look more comprehensively at my whole self and what is affecting what. Hope all of that makes sense :)

I feel extremely blessed that my parents help get me to the best possible places to help me and that I have so much support from my husband, family, and friends. I wouldn't be able to keep such a positive attitude without them. My mom has the hardest job taking me to these places and watching me in pain. A mama doesn't like to see her baby sick! Although I have been in constant pain, I still feel a peace that passes all understanding.

A cheerful heart is like good medicine!

The good news is, I've stayed away from the hospital and ER! I am really trying to monitor my stats everyday so that I stay out of crisis mode. Dr. Watson, who I LOVE, is always on top of things and makes sure I am ok. She really listens to me and what my body is saying. The bad days or times consist of really high heart rate, very hot, and an awful sick feeling. I feel really out of control of my body :( BUT, Good days have out-weighed the bad, and for that, I am thankful! I spend each night in bed thanking God for all of the positive things in my life and trying to keep my spirits high. Then the bad days don't seem as bad. 

David has started his career in professional golf on the egolf tour and I have had fun watching him. He is an incredible player and is loving this new venture. I've gotten to travel with him some and follow him on a golf cart :) Last week he made the cut and his dad drove up to caddy for him in NC. They had so much fun together. I've really enjoyed watching David improve every week and doing what he loves. ❤️

I've been doing a lot with my Bible study small group and really growing in my relationship with God and the girls! We are doing 1,2,3 John which I've never studied. I am looking forward to our retreat in a few weeks!!! I missed it last year because I was in the hospital all week. I am not going to miss it this time! 

The bible study has been such good accountability for me. It's easy to get caught up in life and forget to spend time in the Word and working on your relationship with God. I have been frustrated lately because it is so hard to see the good in things when you don't know Gods plan. I have had a really hard time with my friend Lindsey's cancer. She is so fun to be around and I absolutely love spending time with her. When I'm with her I never see her as sick, I just enjoy her company. I pray for her all the time, but I also pray for understanding. I know I won't ever truly understand why she has cancer, but I pray that God is glorified through it somehow. He knew what he was doing when he gave her Lilla. That little girl is the sweetest, happiest toddler and just loves life. I spent some time with them the other night (bath time) and she just melted my heart. Her smile is contagious and boy does she love her mama. She showed me and named many body parts including her belly button which she thought was so funny! She sang her ABCs and "down by the bay" several times. I just sat and watched her splash around without a care in the world. Does she know what a joy she is? What a miracle she is? She is one special girl. 

Lindsey is in a waiting period after radiation where it is still working in her body. Her repeat scans are in a couple of weeks so please pray for her. We went to lunch this week (at one of our favs Brick Street Cafe) and had fun just chatting about life. Our favorite part of the day was a visit to the spa! I had a gift card to River Falls Spa and decided to use it with Lindsey. We could have stayed there all afternoon in our robes just talking. It was so relaxing and nice to step away from responsibilities for a little while. It was just the "medicine" we needed! (Thank you Lauren!) 

Thank you for your continued prayers!

Xoxo

Riley 

And we're off!

Sayonara Minnesota! We're outa here. I finished up my appointments and tests today and I am exhausted. God really opened the doors to so many appointments that weren't even scheduled. The great news is that there is no damage done to my heart structurally or mechanically. The bad news is there is not a "cure" for Dysautonomia. Lifestyle changes and medications are my best bet right now. The medicine will lower my heart rate and blood pressure which should help the chest pain. 

As for my stomach issues...

My abdomen has been getting extremely distended after I eat. I mean really distended. 

Thank goodness for puffy jackets and vests is all I have to say! They had to make sure there wasn't a blockage or any other reason it was distending. The Dysautonomia causes motility issues with my digestion. So when I eat, my food hangs out much longer than it should, taking its time through the tracks of the intestines. There is some medicine to help, but for now I am going to eat tiny portions several times a day, and stick to easy-to-digest foods. (Which is a bummer because I LOVE food) but weighing the options, I'd rather ditch the belly. 

I am going to try some supervised exercise little bits at a time when I get home. The hard part is balancing what I need for the POTS and what I can't do because of the EDS. I'll let you know how that goes... 

I am excited for a fun girls weekend for my friend Lindsey. It will finally be one I can keep up with. She and I are on the same pace :) We are going to Fripp on Friday. It will be nice to have a relaxing weekend after nine days of poking and prodding at the hospital. 

Thank you so much for the prayers during all of this. They were very much felt by me and Mom. We felt very at peace with every appointment and test they ran. Trusting in God left little to worry about while we waited each day for results and answers. God's peace really does surpass all understanding.

Much love

Riley 

Good to see you again, Mayo!

Well...after another visit to the ER last weekend with excruciating pain, I decided it was time to go back to the mayo clinic. The ER doc at Memorial was so so sweet, but she said, "these are kinds of illnesses we read about in medical school. We really don't have the tools here to help you with one, much less two rare diseases." That did it. Mom booked a flight Sunday night and at 5:30 Monday morning we were on our way to Minnesota! Tuesday morning we started off with zero appointments. My scheduled appointments were for March, so I was at least able to say I had them. If you have an appointment and want to try for an earlier slot (whether it is weeks ahead or just hours ahead of your scheduled time) you can be a "checker". They give you a beeper and if you get lucky, yours goes off and you get in. God was really looking out for me. What was originally a week of no appointments, turned into the GI doctor, POTS doctor, 4 different lab appointments, chest X-ray, abdominal X-ray, abdominal ultrasound, stress test, tilt table test (again!) sweat test, endocrine test, cortisol stimulation test, electrocardiograph, and a 24 hour heart holter and blood pressure monitor. Whew! What a week. All of those tests would have taken all year in Greenville   One doctor has to refer you to another and there's a waiting list...yada yada yada. Not here! And boy, did I have a guardian angel. I was a "checker" at every single one of those tests. I expected to wait all day with my book and iPad, but my beeper would go off within 20 minutes at every place! I felt so blessed. 

Sure, it really stinks being here and constantly being sick, but you have to focus on the positives. 

We have met some really nice people. Almost everyone asks where we are from with our accent. I say yes mam and yes sir to all of the doctors and nurses and they look at me like "what did you say!?!" My mom has been amazing as always. She is my advocate for my health, my wheel chair pusher, and the most fun roomie! I couldn't do it without her. We have gone to some really good educational classes on managing POTS and they have given us tons of pamphlets, DVDs, and CDs. They even gave us extra copies for when I see doctors at home. We have a much greater understanding about daily life style changes, diet changes, and exercise. Honestly, I didn't take the diagnosis very seriously at home because I have lived with Ehlers-Danlos for so long that it just seemed like one more thing. But after a good kick in the booty, I am definitely going to have to make some changes now that I know how serious it is. You don't mess with your heart! I need that ticker to keep ticking :) Mom and I are still here and we miss David, Dad, Langdon and the animals so much. They have some more tests to run because they leave no stone unturned. There are often other illnesses that go hand in hand with POTS, so they want to be thorough.

I just finished my 24 hour monitor and I am SOO glad. I have been wearing the heart monitor and the blood pressure cuff which squeezes my arm every 10 minutes. Yes, even at night. All. Night. Long. And during the day when it would run I would have to stop and stand still while it read my BP. Did I mention how happy I was to shake this thing? Haha 

Please pray for strength this week as I start more tests and appointments. It is physically and emotionally exhausting for both me and Mom.

Love you all!

 

Behind the Picture

I know I haven't blogged in a while. That doesn't mean things have been good or bad. Its just been the same ole, same ole. Each day brings something different. I have been thinking about this entry for quite a while and I hope it is as meaningful as I anticipate it to be.

I have a wonderful friend, Lindsey, who can always relate to something I am going through. And sadly, it is because she is sick too. Just a different kind of sick. She has colon cancer. When people look at us their first thought is, "you look great. I'm so glad you are feeling good". Unfortunately, that is usually not the case. Sure, we can put on makeup, brush our hair, and put on a cute outfit for the day. But our insides are suffering something horrible. Everyday tasks are hard...and sometimes impossible. Lifting kids is tough when your body is weak and tired. The aisles of the grocery store suddenly become a 5K. Showering and drying hair is a task (which sometimes doesn't get done!) Lindsey isn't just sick on chemo days. She doesn't just need meals and help during treatment times. Illness affects us and our families daily. Other than the physical aspects of illness, we suffer emotionally as well. Sometimes we just get sick of being sick. Some days are better than others, but there are definitely days of "why me" and what will my future even look like? You see what is on the outside in these pictures...smiling faces and loving families...what you don't see is the dozens of scars we both have, a port on Lindsey's chest, and braces on my joints. I am sure you know someone who is sick whether it is cancer or a chronic illness.  If you have been blessed with the gift of health, use it to the glory of God to help others! We (and so many more) have the privilege of spreading God's love and word, even if it is through pain and suffering. If we can see God's love through this, you can too! Jesus made the ultimate sacrifice of pain and suffering for us by dying for our sins.

This is Lindsey and her sweet family. 

When Lindsey was 17 weeks pregnant with their sweet little Lilla, she was diagnosed with stage III Colon Cancer! She is my age, a talented photographer, and an incredible friend. Right now she has finished 3 of the 4 chemo treatments for this round. In a few weeks, she goes back to MD Anderson for repeat scans and a plan moving forward. She truly has handled cancer with dignity and grace and has touched many lives along the way. In the 22 months since her diagnosis, she has had 

        2 Colonoscopies (diagnosis and 1 year follow up)

5 Surgeries = 

Colon Resection & Temporary Colostomy Bag at 18 weeks pregnant

IV Port Placement in right neck/collar bone

Colostomy Bag Reversal

Liver Resection (Hepatectomy) & Gall Bladder Removal - took 40% of right liver lobe

Liver Tumor Ablation & Lung Accidental Collapse (Pneumothorax)

1 Pregnancy & Birth

24 Chemotherapy Treatments (the first 7 of those while pregnant)

6 Trips in 2014 to Houston, TX to MD Anderson

6 CT Scans

3 MRIs

3 Ultrasounds

4 X Rays

Uncountable # of visits to doctors offices for followups, problems that arise, weekly checkups

Uncountable # of hours in the waiting rooms

Uncountable # of vials of blood and needle sticks

And you thought you had a rough year! 

And here I am! With my wonderful husband, David

To someone who doesn't know me, nothing looks wrong from the outside. That is why it is sometimes called an "invisible illness". But every day is a struggle, and it won't go away with a few treatments or surgeries. With my Ehlers-Danlos I deal with my muscles and joints aching, dislocating, or just not cooperating. Sometimes my legs hurt so badly that I can't walk. There are very few days that I am pain-free. If any. Sometimes I am so used to it, that I brush it aside. It affects every muscle and joint in my body...which is a lot! With my Postural Orthostatic Tachycardia Syndrome, I deal with symptoms daily. I can't control my body temperature so I am always too hot or too cold. My blood pressure doesn't regulate on its own when I sit or stand, which often leads to passing out upon standing. My heart rate continually increases just standing still. I have to take symptoms seriously, because I never know if this is the time it is causing irreversible damage. 

• 13 surgeries
• 5 for endometriosis
• 2 for bladder endometriosis 
• 2 sinus surgeries because the EDS makes my cartilage collapse
• Gallbladder removed
• Hernia repaired
• 2 hip surgeries to fix the erosion from the EDS
• 5 trips to the Mayo Clinic
• 2 in Jacksonville, FL
• 3 in Rochester, MN
• Countless days in the hospital in Greenville
• 2 Colonoscopies 
• 3 Endoscopies
• Hundreds of hours in waiting rooms
• Dozens of trips to the ER 
• Splints for almost every joint I have
• Dislocated knees, shoulders, and thumbs more times than I can count
• Hours upon hours of physical therapy
• At least 7 prescription medications every day
• SO many blown veins from IVs (from the EDS) 

Much Love, 

Riley

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