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