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