First and foremost, while I have been in and out of the hospital, I want to thank my followers because after only having this blog for a little over a month I made it into the “Top 100 List for Blogs about Chronic Illnesses.” All of that is because of you guys- so thank you!
Now it comes time to break the silence.
I have been dealing with the RSD/CRPS and EDS type 3 since 2010; EDS wise- technically 2015 from a dislocation standpoint, but have seen signs of joint and ligament laxity since 2010. I didn’t think much could phase me after going through a near death trauma and amnesia, but these past few weeks proved me wrong. Let me take you on the journey, that me, my fiancé, my family, and closest circle of friends have been on these past couple of weeks. If you are looking for the short summary head to the very bottom where I summarize in bold. My hopes in writing this detailed post is to help others who are going through the same thing I am, and to help show you the steps we took to get the results we needed (and hopefully by seeing all these zig zags, your journey will be much smoother.)
Also just for a reference: subluxation means a partial dislocation of one of the bones in a joint.
The first week of August 2017, specifically on that Tuesday, I noticed that my hip did not feel right. The weeks before this day I had been doing the best I had been in months. I was back to running my company and coaching, driving, having a more “normal” relationship, and I was still dealing with some shoulder and knee subluxations, back pain, and some fatigue- but that was normal for me. It all changed the next morning. I went to get out of bed and I felt my femur slip out from my hip and I knew I had a subluxation in my right hip. My whole day came to a screeching halt.
Within 48 hours, I was able to be seen by my orthopedic office. Thankfully while I waited we got it back in place at home, and were able to use the emergency pain meds we keep on hand for subluxations and dislocations. Initially because we got it back in place, the doctors said that even with EDS they didn’t think it could have dislocated or potentially even subluxed. The new doctor we met with was fantastic- but it was hard having no one believe that my femur slipped out from under me. The PT that I was working with, was actually able to say that the day before that she felt the top of my femur trying to come out with ROM work. I was prescribed some much needed pain medication and rest after we had x-ray imaging done, and saw no signs of significant damage.
In this time frame, there were some miscommunications with my employees with the sudden change (because I suddenly had to have them cover my sessions) and in between pain medication doses, I was troubled.
From everything that I know about EDS, the hips are the most problematic and once they become unstable, there is no going back.
Most cases even with PT, people who have EDS need to use wheelchairs or crutches (but if you have shoulder, elbow, wrist or finger instability crutches are not a solid option.) Whenever my mind was clear- even if that was a short while- that was all I could think about.
As many of you know between my personal social media and RSD/CRPS social media, I faint when my pain gets to high. That’s right, I go unconscious for anywhere from 30 seconds to 5 minutes. Its not as dramatic as it sounds unless I am in a position that I could fall and get hurt in, and I continue breathing the whole time. I had an “episode” while I was on crutches and my femur slipped… again. So back into Boston I went for another appointment. My medical team in Boston is incredible got me in within 24 hours, and we decided on an MRI. Now for most people MRI’s are easy, for me they are not. Because of the magnetic force, vibrations, etc. I cannot tolerate them. I have to be fully sedated for all of them.
I have been sedated many times and for many MRI’s but we don’t like to continually use sedation for every injury so my teams (the general team, pain team, and ortho team) all consulted and ordered for two other MRI images they had been wanting to get. By doing scans on areas that have been getting worse even if we have had prior imaging helps us keep track of potential friction cysts, tendonitis, and obviously tears. MRI’s are not the end all be all especially for EDS because unless something is still out you can’t see anything and you can’t see the ligament laxity, but nevertheless they are still helpful.
I know that I talked about the MRI in another post and how bad it went and you can read about it here, but ultimately because a doctor wasn’t patient with me he caused some old issues to come to the surface.. aka the RSD. As many of you know, I went through the PPRC through Boston Children’s Hospital in 2010. I technically “failed” after relapsing and we share our differences, but most of their program- after relapsing multiple times- proved to work really well. It worked well enough that unless I had an acute injury, I had no excess pain, flares, or symptoms! Well… until this day.
Anyways they didn’t find anything major in the MRI, but it backed up EVERYTHING I had been telling them I was feeing. For my shoulder, it showed rotator cuff tendonitis and some internal swelling. For my back, they found internal swelling in the EXACT spot I kept, for lack of better words, complaining to them about, and a L5 and sacral bone fusion. Then the hip, oh the hip. It showed swelling (internal and external), a small tear in the labrum, and a small cyst. Sadly my doctor’s couldn’t understand why that small tear would cause so much pain. We ordered an HKAFO brace and the plan was to let is heal and try doing a dynamic ultrasound and a cortisone injection.
Now I don’t know if you have had a dynamic ultrasound, but the goal is to have the doctor subluxate your hip on film. I know- it sounds like so much fun. So we went to get that done, and they couldn’t do it because they didn’t want me to faint from the pain on the table. Personally I feel that it is stupid to do that and expect that it will go well with a girl THAT FAINTS FROM PAIN. Diagnostically it’s a fantastic idea, just not enjoyable by any means. Then the battle for medication started. The doctor I was with would NOT give me any pain medication because I have chronic pain. His words were, “I do not prescribe opioids to people with chronic pain.” Now the hip is an acute injury, and besides that I have NEVER treated chronic pain with opioids. This was the not the first time that this has happened considering the opioid epidemic this country is facing, but it was the first time I was personally accused of treating chronic pain with opioids. Anyhow thankfully I had enough medication to make it through the trip to OC we took with Jared’s family.
I will be the first to admit that I was not in a good mindset to go on vacation, I was hurting and didn’t have a brace yet (it was still being made) and was not adjusting well to needing help with everything. I knew how important this was to Jared and so off to PA we went to meet with his family. The trip was nice but food allergies and being in a wheelchair made things hard. We actually had to report a restaurant to the ADA because we couldn’t get my wheelchair in and I tried to kinda hobble and… my hip subluxed. So it was kinda a disaster to say the least.
Jared and I get a lot of questions about how we make our relationship work and hear about many of you and your partners who feel “fed up with one another.” We would be lying if we said that we didn’t get fed up with one another.
First off- it is hard for the person with the chronic illness, we have to adjust to someone taking care of us and not being able to be independent. This is a hard thing. Now for the care-taking partner- it is hard for them to take care of someone all the time, they have to adjust their schedule, and for some how they even do things for themselves. This is equally hard for both sides. Then to top all of it off you both love one another and are disappointed about the way things are in the moment. Getting into this groove is not easy and there will be fights along the way. If I could go back to certain parts of that trip, I wish I could remind myself that I cannot be mad at him for helping me… when I AM THE ONE WHO NEEDS IT. He could’ve walked away, and I don’t say that as a threat but ultimately he could have. There are times that we let our anger and frustration about our illnesses carry over to our spouses (to be honest more often than not we can do that with anything) but adding a chronic illness adds so much… that sometimes one mishap makes everything feel like it is falling apart. We got a bit fed up with one another, but in the end there is no “right” way for a couple to navigate a chronic illness.
After getting back home, I shortly got the HKAFO. Now if you are getting an HKAFO it is NOT a short fitting. The whole thing comes in pieces and they build, mold, and form it to you. Mine took about 3 hours. The process is very tiring and somewhat painful for the joint (from getting up, getting down, etc.) so be prepared.
Things got MUCH easier with the brace. I needed crutches and got the SMARTcrutch and they were VERY different from regular crutches, but worked well. The SMARTcrutch is designed for people with EDS. With the brace, I was able to move around in my room/office and get back to work! Things were going well, and besides dealing with the side effects from the MRI incident things were going decently well.
I was somewhat independent at this point between the crutches and the brace. While I was showering, I was combing through my hair and something in my thumb subluxed. I am normally really precise about where something popped but, no pun intended, I couldn’t put my finger on where it was.
The next day (Friday) we were set to see my pain team so we used the resources we had at home to handle the thumb subluxation. I went to my main pain doctor who is the head of all my medical teams. We discussed pretty much everything from the hip to the former MRI incident. He had some different ideas and it was very productive. I walked away knowing that from here on out any sedation I have will now have it’s own protocol- that every doctor MUST follow, my thumb doesn’t look good and I need to get in with ortho ASAP, there was a pain doc in the department that worked with patients who had EDS and we were going to see him the following week (my doctor even set aside time to fill him in on my lengthy history so the appointment would be as productive as possible), and they wanted me to get another opinion on the injection before jumping in. I know- so productive!
My othro team is amazing and they were able to squeeze me that following week hours before my doctor was heading to the airport for his wedding! My doctor looked at my thumb and said it didn’t look dislocated but didn’t look great so we ordered a new brace. We updated him on the pain teams plan. While I was there I had him look at my shoulder (that has a history of dislocations) that had been aching like it does before it goes and he thought it was the crutches. We walked away with a new brace, a Home Exercise Plan for the Shoulder, and a plan to use the wheelchair part time around the house to limit the crutches.
A couple days later I got to meet with an amazing pain doctor who specializes in EDS and it was so refreshing! He literally was the definition of a breath of fresh air. He just completely understood and validated what I was feeling and experiencing. He went over everything from how EDS effects joints to the GI track. We also talked about narcotics, and he made some great points. The narcotic epidemic is great and everyone needs to be sensitive, but when something subluxes/dislocates we cannot leave people suffering from acute injuries. We walked away so much information and I knew he was going to be an asset to my team.
A few days later things took an unexpected turn. I got out of the shower and my legs felt like ants were crawling under them and so we packed down with the ice packs-like normal. Typically it would take 15-20 minutes to go numb from the ice so I was literally just chilling in my bed waiting. Then it hit about 25 minutes and I remember thinking that was odd and I started to feel my legs getting warm.
Suddenly my legs felt like they were on fire and my skin was peeling off.
I grabbed onto my legs, became hysterical, and lost control. I was hysterically crying- like ugly crying- with snot and tears running down my face. I was hyperventilating so hard that saliva started dripping down my chin and I couldn’t talk or breathe. Immediately my dad rushed in with Jared following shortly behind. During this time my shoulder was so loose we had to brace it to prevent a dislocation. After about an hour and some anxiety medication, I was calm enough to talk and was cried out. The pain didn’t fade and I couldn’t eat or drink so Jared took me into Boston that night.
We were in the ED for almost 12 hours straight. The head of my medical team was called in and came in about 7 hours into the ED stay and thought about trying pain medication -opoiods- and I turned them down. I said “We don’t treat chronic pain or chronic pain flares with opioids.” I honestly think they were so desperate to help me they were willing to try it, but I know once you go down that road- you rarely ever come back. So they decided there were different IV medications we could try… so admission it was. They couldn’t send me home especially with all of the fainting spells. The nurses were incredible and we went to get an IV going.
Now I know you read about my horrible MRI and how the IV did NOT go well, but I figured that was a fluke. Nope. She tried twice and couldn’t get it. I just started crying because I was so frustrated and they had to call an IV specialist from the hospital down. An IV specialist does the IV under ultrasound to ensure it will go in. Sadly it was on the edge of my forearm and hurt like hell; it was very cool to watch though. Then we got fluids going, and after a little over 12 hours we were placed in a private room.
The IV meds were helping a bit and weren’t lowering the pain enough, but they found that certain meds got me to sleep so that was incredible. The fainting was still continuous and made me a significant fall risk. Now the HKAFO is a challenging brace. You cannot go to the bathroom in it so that means that all of those transitions have to be done without the brace- meaning my femur could slip out. I was also a faint risk so that made everything a challenge. I think it was the third day into our stay, and even though I was too nauseas to eat or drink the constant fluids made me have to pee- obviously. So because I was a fall risk we were using a commode. Jared and my amazing nurse helped me up and then my nurse helped me fully transition. After I was dressed again, Jared came back in and was helping me back in bed. Now remember the IV meds were not working great, and I fainted. Jared said that he and my nurse caught me but my hip slipped. Once I came to, we had to pop it back in. My nurse started calling all the teams and I was hysterical- but if your hip subluxed you would probably be the same way. Anyways while she was waiting to hear from the teams, she gave me whatever meds I was due for just to get something in me. The fainting was continuous, and thankfully one of meds made me sleep.
Now when I woke up it had been 2 hours, my hip was still in just as much pain and NO ONE had come to eval me or treat my hip. I assumed that no one woke me up so I freaked out. I had to apologize later that night because I screamed at Jared for letting me sleep, for not allowing them to treat me, etc. When he didn’t have the chance- because I was so hysterical- to tell me they hadn’t come. My nurse had come in at this point (to be honest she probably heard me freaking out on Jared) and let me know that she had been calling all the teams and no one had come. After what felt like hours (I honestly do not know how long it took for someone to come in because of the fainting), a doctor from the floor team came in. I was quick to point out how unjustly I was being treated and that they should have come hours ago. Then I explained what happened. Like all of my other docs, she could not understand how my femur “slipped out.” She got a call and as she was walking away she mentioned my name and how I “felt like” my hip subluxed. We knew that I didn’t just feel like it.. it happened! Needless to say I was so angry and Jared was a saint and just listened, and he kept the calm for both of us. I don’t know how he did because he was just as upset (if not more because he was dealing with me) that we had not had treatment. When she came back, Jared did the talking, and explained to her that if we had been home, he could have given me pain meds (the only thing that calms the pain of subluxations) and I wouldn’t be suffering. She said she needed to call pain team to make that decision.
After another hour or so of suffering with no meds, the pain team came in. Now I have been with this hospital for a long time. I get along with almost the whole pain team except the doctor that came in. She said “she wasn’t treating chronic pain with opioids and that was that.” We had to argue with her because at this point my admission for neuropathic pain had to take a backseat because this acute sublux needed #1 priority. She stuck her ground though. My nurse was amazing and from outside the door, we could hear her arguing for us, explaining how I had been treated and how it had been 6 hours with no treatment, and she fought for me. Within 45 minutes, I had the pain medication.
Nurses are the heroes of the hospitals. They truly are.
That night Jared and my father swapped out so Jared wouldn’t have to miss another day of work. Everyone at this point was feeling defeated because the whole reason I was in there had to take a back seat, because of my damn hip. To be clear- it was not my nurse or Jared’s fault. They kept me from falling and getting even more hurt, which I have had many hospital trips where nurses or CNA’s have not caught me when I’ve fainted and I’ve gotten really hurt. There was nothing they could do to stop the subluxation. The following day, all of the teams determined there was nothing more they could do for me. We negotiated for pain medication to treat my hip until I could see my EDS pain doc and my head ortho. I hadn’t seen him since he ordered the extra MRI’s so we needed to catch up anyways.
If you are still with me- kudos to you! It was nice to be home, and back with foxy who clearly missed me- and I absolutely missed her. A couple days after being released, I went back to my new EDS pain doc. We created a plan to get my head orthos final call on the injection site the next day, he prescribed a new sleep medication to help with the neuropathic pain, and prescribed some more pain medication to taper me down as the hip was getting much better. The shoulder was still a concern and we determined it needed to be assessed the next day.
The next day we went to my head ortho, and it was an interesting appointment. We updated him and talked about the hip for a while. He didn’t feel comfortable making the call on the site, and wanted me to see the hip surgeon in the department (who mainly deals with EDS patients with hip instability.) Then we started talking about the HKAFO, he was encouraging me to get out of it, but every time I do it subluxes. We pretty much went around in circles and didn’t really touch the issue. Then he moved my shoulder around and my body did not respond well at all. Now he is one of the best orthopedics I have ever worked with and was very gentle- my body just had a hard time with the exam. He said it didn’t need to be braced because it was still stable enough- and I don’t want to be in braces I don’t need- so I agreed. Once I got home, my dad was getting ready to carry me in (we don’t have a wheelchair ramp yet) and as he was carrying me in- my scapula and shoulder subluxed. That meant I needed to be back on full meds- not tapering them- and my R shoulder was shot. I was pretty braced up as you can see in the photo, but I had enough pain meds to get through the next day at the right dose.
The next day was a Friday, of course, so I knew that if I couldn’t make the lower dose work over the weekend we would be in trouble so I called my pain team. My EDS doctor wasn’t in but my head doc was in. He is great but doesn’t have the same understanding about EDS, he didn’t want to prescribe anything because he felt that if it was “really that bad” I should go to the ED. I decided we were going to try to tough the weekend out with the lower dose. Let me say… it did not go well. After three days of unbearable pain and fainting we went to the ED. They made sure my shoulder was correctly placed and the doctor we had knew me, so that was good. The visit went relatively smoothly until they called pain team. Now anytime you are under the pain teams care, they make the final call on any and all medication. I was hopeful until I heard the on-call was the one doctor I don’t get along with. I was in so much pain and so drained from the weekend, that when she said that it was this specific doctor I got slightly emotional. I know from this post you probably assume I cry a lot, but I truly don’t until the exhaustion and stress combo hits me. My dad spoke for me and just wanted to help this doctor understand where we were coming from and to summarize he said: “We were told if this became unmanageable to come here. If they’re (my doctors) are going to ask her to aggressively get out braces there needs to be a pain plan in place, because they can’t ask her to get out of the braces but not have a plan to give her something when something subluxes or dislocates- they can’t expect her to suffer. They can’t have it both ways.” The doctor agreed and was able to talk to pain team, and ended up being able to give us enough to get us through.
This was when I made up my mind that I was going to become an activist for the use of narcotics. You cannot tell someone they cannot use them when they need them for acute periods. So get ready because you will be hearing more about this as me and my family become very active in this fight. It was a good thing we got medication when we did though because the next day, my left shoulder subluxed for the first time. This isn’t super shocking because I was using my L arm for everything and it just couldn’t handle that.
Now we are right at the end, so hang tight. The following week we finally met with the hip surgeon. He was kind and very honest. In short he said my hips are too shallow and do not have enough coverage over my femur- hence why they are slipping out. HALLELUJAH! We finally had a doctor confirm that I am not crazy and this is really happening. Then things got pretty upsetting pretty fast. He said let me know that my ligaments at this point are garbage. Now that my hip has started subluxing- it is not going to stop until I get older and stiffer.
I clarified this with him by asking, “you mean like no matter what we do these are not going to stop?” “No, sadly they will not.”
He continued by saying that he has to confirm after I go get some very specific images, but the best we can hope for is that bones are still working in our favor because if they aren’t we only have the muscles to rely on. He talked about needing to get me into a PT clinic in RI that specializes in EDS (one of the only places in the country.) He continued and said that if the images come back below borderline there is no point in PT and I would need major reconstructive surgery on my hips. The biggest problem is that if it comes to me needing surgery things get complicated.
Some patients with EDS take to the surgery well, others do not and require many surgeries following. Half of his patients have had success, the other half hasn’t, one is even on her 30th surgery next month (girl, I don’t know who you are but I am praying for you.) It is just unpredictable. It either makes things so much better, or so much worse.
We went down for x-rays and after we came back up, the verdict came in. I am borderline so we can still give PT and the injection a try. He finalized the location for the injection, and it is solely to help reduce pain so we can increase PT. The kicker is that my other hip is just as bad and could go pretty much at anytime. He was shocked that it hadn’t already.
So where am I now. Well I have had a week and two days now since that appointment to process. Knowing I will have to be in the HKAFO for an endless timeline at this point and I might not be able to walk down the aisle has been hard. Knowing the other hip could go and the fact that is has been aching is even harder to handle. I do still run a company and the hope is that I can go privately coach one of my students for two weeks in FL in December and get back to working with our clients here soon. I will be going for my first evaluation with the Muldowney Clinic in RI next Thursday and hopefully they can get my shoulders stable enough to go back on crutches- then I can go back to all of my work activity! Then the hope is that they can get the hip under control, and keep the other one from subluxing. We are all hoping for the best. I appreciate all of your prayers and I ask that you pray for strength for me and my family, and if it is God’s will, for progress. I want what He wants, even if what He wants isn’t what I hope for. Thank you for giving me space, allowing me and my family & close friends to process, and just be silent. I truly am okay and am ready to fight what we can fight, and God has given me a peace that I cannot even explain.
I have a couple thank you’s I want to make:
Jared: your heart is gold and I appreciate and love you. Thank you for fighting this by my side and choosing to love me through this. I could go on but I know you do not want me to brag so I will leave it there. I love you so much and cannot wait to be your wife.
Dad: Thank you for constantly problem solving and for staying overnight in the hospital with me. Also for all the late night movies and constant love- and for giving Jared a break on most nights. I love you.
Mom: Our bond could not be closer 😉 Thank you for always visiting me in the hospital, coordinating my care when I couldn’t, for helping me enjoy my favorite season even though I can’t be outside (especially all of the apple treats!), and thank you for the countless hours you spend helping me function. I am so glad at least for right now, I am more independent, but thank you for always being my go-to if I need help. I love you.
Caitie: As you prepare to leave for college and be on a D1 volleyball team, thank you for making time for me. Thank you for helping me with simple tasks and never complaining. I know I haven’t been able to see you play, but I know you are doing great and I cannot wait to see you play in person again! I love you.
Stephen: Thank you for not being a jerk like teenager. Thank you for being my tv buddy and my runner for everything I need. I have enjoyed having time getting to hear about your school year. Keep up the great work! I love you.
My Medical Teams: You continue to be amazing. I have no words besides a simple thank you. I appreciate all of you. Also congrats to my doctor who got married 3 weeks ago, Jared and I wish you both the best!
Maura: I couldn’t go through this life without you. Thank you for all of our talks and for being someone to cry with me. Thank you for continuing to walk through life with me, and support me. I hope Jared and I can visit you soon. Even though I can’t be in my senior year with you.. kill it this year! I love you twinkie!
Mike: Your energy is infectious and you have shown me that for the good or the bad in life- “It’s all apart of the fun.” Thank you for being a drive away and for all the reiki sessions. I look forward to changing the world with you. I love you!
My Grandparents: All four of you have been supporting and praying relentlessly for me. I couldn’t be prouder to be your granddaughter. I love you all so much.
My Christian Mentor: Thank you for helping me seek God in all that life has thrown at me. Thank you for being my sounding board and prayer warrior. Your smile warms my day every time you visit. I love you!
My Dancers/Clients: Thank you for continuing to support OST and what we do. Also keep killing the game! I love seeing your Instagram posts and hearing about your achievements. You all inspire me. I love you all.
To all my followers: Thank you for being by my side. I have gotten to know so many of you and couldn’t do what I do without your support. Thank you for being willing to share your lives with me and for supporting mine. I love you all.