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