Coming home

This is waaaay overdue.

 We’re in the airport in LA waiting for our flight (that is delayed) so I’ll try to do a quick catch up.

Monday was Genevieve’s last treatment. It was much like the others. The final consensus was hardware pain. I spent the afternoon and evening filling out the FAFSA form which took forever, and making arrangement to visit GCU in Phoenix in the way home.

Tuesday morning we packed up our room at the Ronald McDonald House. I have to say again how amazing it was to be able to stay there. Every night of the week volunteers came in and cooked dinners. They also had an industrial coffee machine that makes mocha chunks and macchiatos, and lots of snacks as well. The staff and volunteers were so caring and welcoming. We took a bumpy flight to Dallas, had a couple hour layover and then a really bumpy flight to Phoenix. We Uber’d to the GCU hotel and were not very impressed with the surrounding (which we expected, but still). The next morning we took the shuttle to campus for the tour. We again saw more of the surrounding area and I pretty much wrote off GCU as a possibility. Then we got on campus and everything changed. The tour was great and Genevieve fell in love with it. I’m not going to spend a lot of time with the details, but reach out if you want to know more.  It was a pleasant surprise. The tour was mostly golf cart with a little walking. We came back and rested because Genevieve was pretty sore, then went back onto campus to see it at night. We walked just a little more and then Genevieve was physically done. She was happy with seeing the school but was paying for it 😥.

Thursday morning we caught a flight to Santa Ana so we could tour Vanguard University. We went to pick up the rental car but hit a roadblock. I had my wallet stolen last summer and still had not gone in to get a replacement drivers license. Going to the DMV is easy to keep putting off. I have carried around my expired DL for all ID purposes and kind of forgot about it. Guess where an expired IF won’t work? Ugh. No rental car. So I decided to get a car using the Turo app (private car rentals that’s like an AirBnB for cars). You have to submit a photo of your drivers license which I luckily had on my phone (Avis/Enterprise/Dollar would not accept). We Uber’d to the Turo car and then drove to Vanguard. Met with an admission counselor and got the tour. Nice really small school but Genevieve I could tell that it was not a contender for Genevieve  after GCU. We left there at 4:15 and drove straight to the local DMV to get a new DL. I was in and out of there in 10 minutes. It was a DMV world record!  We went to a hotel for the night.

Friday morning we packed up and drove to pick up a rental car from Budget because I needed a one way rental that I would either leave at LAX or drive back to the Bay Area depending on whether Genevieve was going to get surgery next week. We picked up the rental, then went and dropped off the Turo, then finally got on the road for Beverly Hills (where Genevieve’s arrogant foot surgeon is located when he’s not in NY).

I’m actually not in the mood to write about the appointment. Let’s just say the first half of the appointment we were planning on surgery to remove the hardware next week, and then he did a 180 and said he would not do the surgery until she after her 18th birthday (July). There is so much to fill in but I’m too frustrated to write it out. Maybe tomorrow or this weekend. We are now at the airport waiting for our flight. I’m so ready to be home, but also sad and discouraged that we don’t have a plan in place to get Genevieve pain free in the near future.

So here we are.

Overdue update

Sorry for the lack of posts.

Thursday Genevieve had her treatment and we feel we got some clarity. The nurse Shayla spent some extra time with us talking through things. Genevieve is experiencing less pain overall. The treatments are taking away all pain except where the hardware is (and maybe a little tendinitis). Sometimes people get hardware removed but only after giving it sufficient time to settle down which could be a whole year from now. The frustrating part is that this pain could be triggering the neuropathic pain. We are going to continue the last few treatments and see if we can't get the neuropathic pain to stay away longer (we think she got about (5 hours today), and I am going to contact her foot surgeon to discuss the other pain and see if he has any solutions on how to settle it down.
I feel peace that her overall pain is at a much lower level than before she started scrambler therapy 10 days ago. The question is do we stick this out increasing at such a slow pace (8 days = 5 hours so far) even though we still need to deal with the other pain...🤷🏼‍♀️

After treatment we went to take an official tour at FGCU. What a beautiful campus (if you don’t mind sharing it with alligators. There was an 🐊 sunning itself by the welcome center when we arrived 😳.) The tour was about 2 hours long, on and off a shuttle with walking in between. Genevieve did really well but was very sore later. However, 2 weeks ago she would not have been able to do that. That was a good reminder how much progress she has made.
Unfortunately she paid for days with pain and swelling.

Friday she had her treatment and then we did a little shopping (the weather hasn’t been very warm and we are beyond bored) but unfortunately G was still in a lot of pain from all the walking she did on Thursday do we had to cut it short. I spoke to her foot surgeon (it’s nice to have his cell #) about where we were at with G’s progress and wanted to talk to him about the hardware pain. I assumed he would tell us we needed to give it another 6 months to a year to allow it to settle down, but to my surprise he said it could come out now, especially because it could be effecting her CRPS. We are going to see him next Friday so he can examine her and devise a plan.

The weekend- still pretty sore, but we went to the movies and saw Little Women. We went baby clothes shopping for some parents who are living her at the Ronald McDonald House with us. Their baby was born weighing 1.9 lbs and has been in the NICU for 2 months. He just reached 5 lbs. It has been a good opportunity for Genevieve and I to practice our Spanish. The dad speaks pretty good English but the mom doesn’t speak any.  They asked why we were there. Genevieve wasn’t there and I tried explaining her condition in Spanglish, but considering it’s hard to explain in English I’m pretty sure they had no idea what I was trying to say.

Today I spoke with Genevieve’s foot surgeon again. I wanted to get an idea of his availability since he works on the east coast part time and west coast part time. There is the possibility that Genevieve could have surgery as early as next Monday, a week from tomorrow.
As much as we want to keep moving forward, the prospect of another surgery is terrifying. It’s pretty much the worst thing for people with CRPS. We would be happy to wait and see if the hardware pain goes away on its own  if we didn’t think it was aggravating her CRPS and hindering remission.
Her surgeon is going to reach out to Genevieve’s pain specialist tomorrow about formulating a plan since special precautions need to take place with her situation. I definitely don’t want to make any rash decisions. If we are unsure about doing this surgery then we won’t do it in a week and we will take more time to consider it.

Continuing to pray for clarity and HEALING 🙏🏻

I’m ready to be home but one thing I am loving are the beautiful sunsets.

Trust

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You

You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
I will trust in You
I will trust in You

Day 7 of Scrambler

Another day of treatment. Genevieve wasn’t feeling the sensations from the machines as much today so they switched her from the pediatric leads to the adults leads which helped.

At the end of the treatment G said that she was probably the most pain free she has been since starting, but her ankle pain (that we assume is from hardware) comes back quickly. The effects of the treatment lasted somewhere between 3-4 hours. Genevieve is not the typical CRPS patient who goes from zero pain to pain and can pinpoint the exact time the effects of the treatment wears off. She goes from less pain to more pain, and the pains are different so it’s just not black and white. While it has been frustrating that she doesn’t seem to be gaining a lot of time with each treatment, she says that her base level pain is less than before she started the Scrambler treatments...so I need to focus on that. It’s not necessarily going how I expected and hoped it would, but we are seeing gains.

After the treatment we drove to some springs that we had heard about. The first place had just been drained so we drove to the next place right next door. It was like a throw back in time. It was this funny little “resort” of pyramid homes surrounding a natural spring lake.

I think it was private and we couldn’t find an office to ask about a day pass. We considered going in anyway but we felt the water and it wasn’t warm. Sad day. I can’t believe I can’t find a warm therapy pool here in Florida. At our pool at the gym at home the therapy pool is where the older people go. I would think it would be very popular here.

At this point I think we are going to finish out the 10 treatments then come home. The last one will be on Monday.

Day 6 of Scrambler - feeling discouraged

Today has been discouraging.
Last night when I was massaging Genevieve’s feet (with the epsom salt lotion) I could tell the inflammation was so much better. It was the first time her foot felt really normal in comparison to her other foot. It has less muscle and feels slightly smaller, but finally it was feeling normal. I’m not sure what it was like this morning before scrambler therapy, but she did wake up with slightly swollen face. That happens sometimes and we haven’t been able to figure out why.
Scrambler therapy today was fairly normal. She mentioned again that the effect wasn’t the same as Friday. She also experienced some more heel pain. The doctor thinks it could be a bit of tendinitis from not using the foot much since surgery. He wanted her to take it easy today (no PT). The problem is that tendinitis needs rest and to not push through the pain. With CRPS the foot needs use. She came back to the house and did an epsom salt soak and has been elevating it. We noticed her foot is showing inflammation again and is going up her ankle. You can actually feel a line where the inflammation starts and stops. G marked it with a sharpie so we can see if it spreads any higher. We’re confused. We don’t know what is going on with her body.

Day 5 of Scrambler- just eh

Genevieve says her pain level hasn’t fully returned to what it was before Friday but today she was moving like it has. She had Hydrotherapy at PT and it went well. When she got out she said her foot felt a little looser. We got lunch and just waited around a bit until her Calmare treatment. It went similar to all the treatments. When we left she wasn’t pain-free though. She had her standard outside ankle pain near her hardware, and she was also experiencing some heel pain ☹️. She thought maybe it was  aggravated from the exercises during PT.

We went to Bonita Springs Beach after and got some vitamin D. It was really windy and G wasn’t in the best mood so we came home. She thinks the effects of the treatment wore off some time between 2-3 hours later so it’s hard to tell if she gained any time today. If she did it wasn’t significant. She wasn’t able to walk by pushing off the ball of her foot without a lot of pain so I think she was disappointed. So today didn’t feel very successful which was a let down after Friday.

Praying for big gains tomorrow. 

*Reminder- Genevieve does not know about this blog right now. Someday she will, but for now I want to help her focus on healing and positive things.

Sunday

We went for a drive today to Fort Myers Beach. We may have ended up in Estero, not really sure. The traffic was pretty insane trying to get there and parking was a chore. Walking on the sand is hard on G’s ankle/foot so we didn’t wander, just made a bee line toward the water and claimed a spot in the sand.

It was nice but wasn’t especially warm. We got to see dolphins right in front of us which was a treat.

We stayed for a couple hours then got back on the road.

Overall it was a low pain day. She feels like her pain level has not gone all the way back down to her baseline.


*Reminder- Genevieve does not know about this blog right now. Please help me keep it that way.

Saturday

There are no treatments over the weekends which is disappointing after such a great response yesterday. However Genevieve felt like her overall pain level was still lower than usual and we decided to do some exploring. We drove over to Florida Gulf Coast University and walked around the campus a bit.

 There are a lot of areas of water around the campus and we joked that is was alligator ridden. Then we came across these signs 😱🐊🤪. 

The campus was really pretty. I’m going to try to get us an official tour this week. 

We did a quick stop in at Walmart to grab a couple items and then back to the house. G’s pain level remained low for the whole day. Not pain-free and she did have some spasms, but lower than her usual baseline. She feels optimistic 😃

We finished the evening with joining Cornerstone Fellowship live online for the Saturday night service. It’s the closest we can get to being at church as a family. 

God has truly carried me these last few weeks. Yes I have been praying for healing for Genevieve, but most of my prayers have been asking him to carry this for me because it was too heavy.  Learning about this condition has been a gut-wrenching journey where I have to constantly cry ‘it is in your hands Lord’. I am thankful that he does take it when I allow him to. 

Day 4 of Scrambler- STUFF IS HAPPENING!

The session went similar to the others. When the treatment was over she felt about the same as she did the past 3 days. Pain was gone from all areas of her foot except the outside of her ankle which never gets pain free. Dr D pulled up her xrays and showed us that her pain is where the hardware is from her surgery and he thinks her pain is due to that. She still has some inflammation we are working on and she needs to build her bone density back up. He’s hopeful we can get that pain lower if not completely gone with an anti inflammatory and rebuilding bone strength. Aside from the pain, Genevieve’s foot function has not been right since her surgery. She could not make the motion to compete a full step. When you take a step and your foot rolls to the ball of your foot- she had no control and no feeling at that part of the motion. She could not will her foot into doing it. She felt like she would actually fall, and you could see her start to lose her balance when she tried. Instead, she would put her weight on the outside of her foot to complete a step. At lower pain levels her walk almost looked normal when she did this. At high pain levels her foot would turn out and her limp was very pronounced. Today when we left the treatment she was in no pain except the spot where her hardware is, and she still couldn’t walk correctly. We went straight to a cafe for lunch and while we were standing in the back waiting for our name to be called we were moving out of peoples way coming in and she took a step and said “it did it!” Then she took a couple more steps and said “it’s doing it!! My foot is doing it!! It’s like it remembered how to walk! One second ago I couldn’t do it, and now I can!” 

There was lots of hugging and crying and I said “keep walking!” So we went outside and I took a little video of her walking to send her dad.  She was finally able to make a complete step, rolling onto the ball of her foot 🙌🏻🙌🏻🙌🏻🙌🏻. 

Her pain free state lasted about 2 hours. We were only getting about 20 minutes pain free after the treatment the last 3 days. As the pain started coming back she said it was harder for her foot to make the correct motion again but she could push through and do it. When the pain fully came back she really couldn’t do it any more. 

Then we went to a physical therapy appointment where she had hydrotherapy. The therapist gave her good exercises to do and all went well. When she got out of the pool she felt like a lot of the pain relief came back and she could walk pretty normal again. That didn’t last too long though.

We just got back to the RMD house and her foot is spasming and acting like it’s normal jerk self. BUT STUFF IS HAPPENING 🙌🏻🙏🏻💗

Day 3 of Scrambler Therapy

We sleep in a little late because our bodies have not adjusted to East coast time yet. So we have been getting up between 9 and 10. Genevieve’s appointment was at 11:30 and it’s about a 45 minute drive from the Ronald McDonald House. 

Again, the treatment was about the same as the day before. Dr D moves her leads around and adjusts the intensity until her foot is mostly pain free. She has an area or two that are stubborn. Perhaps scar tissue is in the way or she is feeling pain from her bones having low density (she has some osteopenia, I think it’s called). Anyhow, once she is hooked up and dialed in she walks around in tiny circles and is mostly pain free. Then she gets on the bed and lets the machine do it’s thing for 50 minutes. She has been experiencing a lot of itching where some of the leads are placed. Like really intense itching! The doctor says there are certain nerve fibers that conduct the itch sensation, and that it’s not a bad fiber to conduct through, it’s also not very comfortable. So he gave her a prescription to help with the itching. He also gave her a prescription to help with inflammation so she can stop taking 600 mg of ibuprofen 3x/day. She will start these tomorrow. 

We got to have lunch with Kristi  & Megan today. They are both super sweet. Megan is finishing her booster treatment tomorrow and they are flying home to Ohio. 

After lunch we went to the Physical Therapy appointment which was just an exam and evaluation. G answered a bunch of background questions, and the PT did a lot of measuring and testing to see where she was at. We got a good feeling from her and look forward to starting tomorrow. They have a therapy pool and G will get to do some pool time with the therapist which will be great. 

Unfortunately Genevieve’s pain progressively got worse throughout the evening. We again ran a couple errands and each time she would get out of the car her pain was worse than before. I don’t know if it’s the treatments or the lack of PT she has been doing. Before we left CA she was using a warm therapy pool almost every day. 

I just met another mom through Facebook. Her 11 year old was diagnosed last week. I can hear the agony in her words, something I’m all too familiar with. It’s weird how you can have such an instant connection with a stranger. Oddly enough her daughter also had a tarsal coalition surgery (although that is not how she got her CRPS- it was vía a sprained ankle). We have gone down similar research paths and exchanged information on treatments. She had some info on hypnotherapy which I haven’t explored too much yet but I definitely will.

Praying for a breakthrough tomorrow. I don’t care how long this takes as long as I know it’s working. 

We are praying continually and are grateful that so many of you are also. 

***PS- I’ve decided I’m going to go live with this blog. Part of the reason I have been hesitant is that I want to be able to honestly record the process here, but I also don’t want Genevieve reading it right now. I don’t fully understand neuropathy, but there is a brain component and I think her head knowledge can hinder her healing. I answer her questions, but I only offer certain information on a need-to-know basis. She doesn’t need to be processing all the other stuff. So I’m ok with friends and family reading and sharing this, but please don’t mention “the blog” to Genevieve, and please don’t ask her things about her foot, pain, treatment, and especially CRPS.  

HOWEVER, please feel free to reach out to her. Not many of her friends have communicated with her much since we’ve been here and I know that bums her out. This is really hard. She learns a little bit more about this horrific condition everyday, whether from the doctor or someone else. It’s a lot to take in for a 17 year old. She needs to feel loved more than ever. 

Day 2 of Scrambler Therapy

Genevieve’s treatment was similar to yesterday. She experienced less pain while hooked up to the machine and shortly after but it came back pretty fast- maybe 20 minutes after being disconnected. When her pain comes back it comes back stronger. 

The highlight was at the end of the treatment when  got to meet another mom & daughter that I met through a Facebook group for parents of kids with CRPS. We chatted for a few minutes and made plans for lunch the next day. 

Genevieve and did a little running around to CVS and the dollar store to pick up some necessities and just the 2 short trips really wore her out. She was in a lot of pain that evening. We stopped by the local YMCA to see about using the facilities (still working on that) and I made an appointment at a physical therapy place with a warm pool. We need to get her back in the pool. 

We had dinner at the Ronald McDonald House.  Volunteers come in and cook dinner every night for the people staying here. It is such a gift. We are so thankful we get to stay here. 

Holding out hope for a little more progress tomorrow...

Here Dr D had her adjusting her own dials. He explained it that her body would be more receptive if she took some control, opposed to tensing up and waiting for something to happen.

Day 1 of Scrambler Therapy

It was a long night of travel with no sleep. Flew SFO to Charlotte, 1.5 hour layover, then Charlotte to Fort Myers. Picked up the rental car then headed straight to Bonita Springs to the Calmare Pain Therapy place. We filled out paperwork, watched a video on Scrambler Therapy, and then met with Dr D’Amato who examined Genevieve. It ended up being a 3.5 hour appointment. Genevieve was hooked up to the Calmare machine for 50 minutes. She experienced a tiny bit of pain relief, but that went away shortly after being disconnected from the machine. Dr D’Amato has treated a lot of CRPS patients. He feels her response to the treatment was positive and thinks she will keep responding to it. We are cautiously hopeful. The treatment itself isn’t painful (he hooked it up to me too so that I could see what it felt like). It’s tingly and kind of pins and needles like.  Genevieve experienced some pretty intense itching with it which he said some patients do. I don’t understand the science behind it enough to explain how it works, but it is interesting when he explains the different nerve receptors and how they respond.  We go back tomorrow at 1:00(EST) for another hour of treatment. I will also be looking for a PT place, or at least a warm therapy pool to do in the afternoons. 

After the treatment we drove to the Ronald McDonald House in Fort Myers where we are staying. The people here couldn’t be nicer and we feel beyond spoiled. Apparently some big designers from New York remodeled it a few years ago and didn’t hold back. It’s luxurious and stocked with everything we could need.  

We tried to push through and not sleep until tonight but we couldn’t make it! We slept from about 6-9pm and just woke up and ate dinner (prepared by volunteers). 

Genevieve is experiencing elevated levels of pain tonight. Dr D’Amato said this would probably happen. It’s not excruciating but more than usual when at rest. 

It feels good to be here, and I am just holding on to HOPE. 

{Sorry for the sideways pic and possibly bad formatting. I just discovered that I left my laptop at security in SFO (because of course I did) and I’m doing this from my phone.}

In less than 24 hours we will be on a plane to Florida. I think we're both anxious. We need this to work.

Genevieve has started to follow a couple facebook pages of other girls with CRPS. She is slowly learning a little more about it. She is silently processing. It breaks my heart.

Genevieve has been back in her boot for the last couple of days. She had a lot of swelling after her last PT appointment and was in a lot of pain AKA "waffles" walking. I read somewhere that it helps to not use the word pain. I've given up trying to understand all the reasons why things work or don't work and just accept some things at face value. So when we have to talk about pain we say waffles, but we try not to talk about waffles all that much. We also don't talk about the way her foot looks and feels so when I see color changes or feel a temperature change I don't tell her. Something about the neural pathways...

I'm still trying to decide what to do with this blog. I haven't shared the link with anyone.  It feels strange to be leaving our lives behind for a couple weeks when I have hardly told anyone about this. It's a bit lonely for me and I wonder if it is lonely for Genevieve too. It's like I just can't wrap my brain around it. This is the scariest thing I have ever been through. There have been some really dark days.  I guess I don't know how to put this out there and be real about it without also being incredibly vulnerable. And how much do I want this "out there"anyway. I don't need a bunch of likes on facebook. I don't want a bunch of empty promises of prayers and good thoughts. I guess what I truly want is for people to get on their knees with me. I have no understanding of how God chooses who to heal and not heal and I don't think the more people I get to pray with me will alter his will. Yet I do want people to PRAY. I want people to pray for healing. I want people to pray for peace and comfort for Genevieve.

I want to bring awareness to CRPS. I want people to know about it so that there are less people being misdiagnosed for years. I want doctors to get more education about it. I want there to be more research and for a cure to be found SOON.  Yet I'm not ready to tell the masses and answer hard questions yet. So I'm conflicted.

For now, I guess I'm really just wanting to share with OUR PEOPLE.

Treatments

Genevieve told me tonight that people think I'm crazy for flying her to Florida for treatment. All her friends have suggestions for her on how to deal with the pain based on when they have been injured. None of them understand what we are up against. Genevieve is in pain now, yes. But I am not going to such extreme lengths because of the level of her pain right now. She is in early stages. We are doing this so that she doesn't have to face a lifetime of disability and unbearable pain in the future.  It's kind of frustrating that people don't get it, but I'm also kind of glad that they don't get it. I don't want anyone scaring Genevieve. She knows, but she doesn't.

I just realized I hadn't mentioned the Florida thing. I admittedly am consumed with spending hours upon hours chasing treatments and the best places to get them. One such treatments is called Scrambler/Calmare therapy. It is 

"a computerized medical device that applies a low amperage electric signal which transmits synthetic non-pain information through disposable surface electrodes on the skin (similar to an EKG) to surface nerve receptors of the c-fibers." 

You can read more about it here.  It doesn't work for everyone, but kids seem to have a better chance of it working. The doctor in Bonita Springs F,lorida is considered one of (if not THE) best. Supposedly the success rate is dependent on the operator, so we are not going to take our chances going anywhere else. It's expensive, but if it works it will be soooo worth it. Most people have to go back for boosters anywhere from 2 to 6 months later. The idea is that the time needed between boosters will get longer and longer.  We fly out late on the 17th (5 days from now) and will be there approximately 2 weeks if all goes well. We should know within 4-5 days if its going to work. If it is going to work, the hope is that it will work in 10-12 treatments (one treatment per day). However I have heard of people taking as long as 7 weeks. I'm trying not to think about that and will cross that bridge when/if we come to it.

In the meantime we have joined a gym with a warm therapy pool and take G there for 1-2 hours everyday. At home she does epsom salt foot soaks and I massage her feet every night with epsom salt lotion. She uses a Tens Unit several times a day. She also uses an app called Recognise. It has pictures of left and right feet and she has to distinguish between R & L as quickly as she can. There are studies showing that the brain starts to disassociate from an injured limb which somehow effects the neural pathways. The app is supposed to help the brain continue to keep the neural pathways healthy on her left side. There is a short video explaining it and mirror therapy here.

She currently takes a Calcitonin nasal spray (to help with osteopenia that is happening in her bones) a high dose of Vitamin C, Vitamin D, Magnesium, Ibuprofen, and probiotics. She is on an anti-inflammatory diet. No dairy, gluten or sugar. She drinks kombucha and I have started making water kefir (another fermented drink high in probiotics).

We are getting her on waitlists for several pediatric inpatient pain programs here in CA and one as far as New Jersey.

Other treatments I am still researching are Neridronate Acid Infusion Therapy In Italy, Low-Dose Naltrexone, Ketamine infusions, Prolotherapy, Dynatron Rx STS machine, PRP (Platelet Rich Plasma), Transcranial Magnetic Stimulation (rTMS), Hyper Baric Oxygen Therapy, Infrared Therapy and PEMF therapy.  

I don't feel adept at navigating these waters at all. I question every decision I make and I lament past decisions I wish I made differently.  Overwhelm does not even begin to touch on the heaviness of this.  I have a constant inner battle between sailing this ship and begging Jesus to take the helm. I have to keep reminding myself that He has already seen these days and what is to come, and that FEAR is not from Him.

Genevieve

G has been so strong.  When I first started reading about CRPS everything, EVERYTHING, said the most important thing was to push through the pain and use the limb. The longer she went without using her foot the more severe the CRPS would become.

We told her that we knew it would be hard, but it was time to ditch the crutches.  The pain was bad. She could barely hobble without them.  She practiced over the weekend, and then I told her she needed to go to school without them. She said she would never make it to her classes on time so I emailed all her teachers letting them know what we were doing and asking them to not mark her tardy. When she got home from school she hurt. She was mad at me for making her do it. I felt terrible but I also knew it had to be done.

I continued my research and began connecting with parents of teens with CRPS. At one point I was put in touch with a young man named Sam who had been diagnosed 2 years ago. We began messaging one another and then he offered to call me. He was really straightforward and gave me great advice. He said G HAD to keep using her foot. He said she should only use her bed for sleeping (she had gotten in the habit of long naps and "rests" over the last 3 months), and that she needed to be up and in a chair or on her feet getting back into her life.

There are a few moms that have become my lifeline. Most of which have been through this and have come out the other side, one of them is still in the trenches with her sweet girl, but several months ahead of me.

The last couple weeks are a blur. I don’t eat, I don’t sleep and I barely breath. I cry, pray, and research CRPS. Wash, rinse, repeat. There is no protocol that works for everyone. Not even one that works for most people. There are a lot of things that work for some people. And by "work" I don't necessarily mean remission, but simply pain reduction.  There is a lot of talk about "acceptance" and learning to live with the pain. Again, this is considered the most painful disease in existence. I am not after that. I am chasing anything and everything toward remission.  And then I will pray they find a cure before she ever comes out of remission.

The diagnosis

The posts I read in the CRPS groups were frightening, but I was still holding onto hope that G didn't have it.  We got new x-rays and MRI taken. G's surgeon called to check in and I told him that her PCP hadn't given us the referral to the pain specialist like we were expecting, and that after I had read about CRPS I wasn't comfortable taking his approach. He offered to call her PCP and again ask that he refer her to the pain specialist.

More googling. More reading posts from people with CRPS.

G's surgeon called again because he had received the imaging report. He told me "good news, the images look great and I don't see anything wrong with her foot. It looks like it's healing beautifully". I told him that I actually didn't find that good news. That I was hopeful he would see something wrong with her foot that would explain her symptoms and would could rule out CRPS.

We got into the pain specialist 2 days later. He asked questions, listened and examined Genevieve. He told us that barring anything wrong with her foot structurally, it looked like an obvious case of emerging CRPS to him. He rattled off a plan including Norco, lumbar sympathetic nerve blocks, lidocaine, gabapentin....I tried to take notes but my mind was going numb. Genevieve said she didn't want to talk and we sat in silence on the way home.

Up until now G had been pretty much been in the dark. I had not shared anything scary with her and I asked her to not dive in and read a bunch of stuff. I explained that while it was her nerves that were misfiring, part of her recovery was psychological because she needed to "trick her brain" to not acknowledge the pain signals. I wasn't sure how that was going to happen, but I asked her to not research this and to trust me.

G was now scared too. Scared of the unknown. In this case, the unknown was less scary than the known.

The next day we had our appointment with the orthopedist at UCSF. This was my last sliver of hope that G didn't have CRPS. I needed this doctor to find something wrong with her foot. I willed him to tell me that she had a bone spur, or was reacting to the metal screws or bone graft. He looked over the X-rays, MRI and examined her. He thought everything looked good. He noted she did still have some inflammation, but nothing too far out of the ordinary. We then told him about the CRPS diagnosis she had received. He said she might have a minor case of it, and to move forward as if it is. Continue with PT and using the foot as much as possible. He also mentioned she could try doing contrast soaks - going back and forth from cold water to hot water to "shock" the nerves. In my hours upon hours of researching CRPS, it was stated time and time again to avoid cold and ice as that could lead to a flare and spreading. We just nodded our heads and thanked him and left. I had read that many doctors have little understanding about CRPS, and this seemed to be the case.

The beginning...

This all started back at the end of October when G had surgery on her left foot. It was a complicated surgery to fix her tarsal coalition and flat foot. It was supposed to be the first of 2 surgeries as she was supposed to have her right foot done several months later. We traveled to southern Cal to a surgeon I believed was the best for the job. For the most part all seemed to go well with her recovery. She was non weight bearing for 8 weeks and then was finally cleared to get off her crutches and start physical therapy. The first time she tried to take a step she was in tremendous pain and quickly realized that it was going to be a process to begin walking without crutches. Days went by and she just couldn't put any weight on her foot. We finally got her into PT hopeful that she would start making some progress, but PT was excruciating for her. Week after week she continued to be in serious pain and her progress was so slow. After 4 weeks she wasn't even close to walking and I started to think that something was wrong.  I made an appointment with a foot/ankle orthopedist at UCSF to get a second opinion on her surgery, and then I reached out to her original surgeon's office to get a copy of the operative report.

In the meantime Genevieve pointed out that her foot often got red, and kind of purplish and mottled looking when she stood up. When I touched her feet I noticed her left was substantially warmer than her right. When I told her this she said that when she was at PT her left foot would get really sweaty. As this information was coming to light I was getting frustrated that there was a delay in getting the operative report and I may have written a curt letter to her surgeon's office. He ended up calling us right away and we began describing what was going on with G's foot. We were on speakerphone and Genevieve told him even more things including her spasms and lack of range of motion. Her surgeon asked me to take him off speaker phone and this is when I heard the term CRPS for the first time. Actually that's not true. The night before I was googling her symptoms and came across it. I even sent a link to Genevieve with a question mark. But I hadn't really read much more than a blurb. Her surgeon was not alarmed sounding, but posed it as a possibility. He wanted Genevieve to see her PCP and get a referral to a pain specialist.

The next day we got G into her PCP who at first wasn't leaning toward CRPS, until he felt her feet and felt the temperature difference. He then saw her foot changing colors as well. Instead of referring her to a pain specialist he wanted to treat her himself with a "creative approach" as he called it. He wrote her a prescription for a couple different meds and wanted us to check back in with him in 5 days.
I went home and started googling, because thats what I do. I wanted to understand what we were dealing with and what the meds were.  I was not coming up with any information on the first med so in addition to my googling I also joined a couple CRPS facebook groups. I figured that people dealing with this condition would be a great resource to tap into.

However nothing could have prepared me for the posts I would find in those facebook groups. This would be the beginning of some of my darkest days.

I don't even know where to begin...

I don’t know what this space is yet. A place to keep family and friends informed, maybe. Perhaps it’s where I will document our journey to serve as a resource to others going through the same thing (it seems we have become part of an exclusive club where I would rather not have a membership). Or this may just be a dumping ground for all my innermost thoughts; the good, the bad, and the really really bad. Either way, I just feel like I should be putting words down somewhere so I guess this will be the place.

There was a time where writing helped me process things. Maybe that’s why I’m having writer’s block. Because I don’t want to process this…

Genevieve has CRPS. 

Complex Regional Pain Syndrome, formerly known as RDS - Reflex Sympathetic Dystrophy.

Summarized from the RSDS.org website

CRPS/RSD is a rare chronic neuro-inflammatory disorder. It occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma (including surgery). The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.

You can read more about it here and here

Genevieve is in the early stages of this.

That's all I can write for tonight.