By Jeanette Bednar 08/25/2022
Content Warning: This page may contain information that is overwhelming or triggering, especially for those who have medical trauma. Please proceed with caution & care, and return to it later (or not at all) if you get overwhelmed. It involves conversations about medical gaslighting, self induced vomiting, needles, medical procedures, surgery, incisions, and other topics surrounding health issues and chronic illness.
Overview
In 2021 I was diagnosed with a rare condition that seemed like a stomach disorder, at the age of 23. I managed to get a relatively quick diagnosis and had surgery to resolve the issue. Today I am one year post op from recovery for the surgery I had for the condition.
My diagnosis was Median Arcuate Ligament Syndrome, also known as Celiac Compression Syndrome or Dunbar Syndrome. MALS is an anatomical anomaly and a compression syndrome. It is supposedly rare, but also under-diagnosed. The symptoms might seem like a GI issue, but it is actually a vascular and/or nerve issue. All in all, it is very complicated.
My hope with this post is to provide concise information and a general understanding of MALS in a format I didn’t come across when researching the condition (I looked everywhere for blog posts and personal narratives- they are out there, but limited). This page will contain information about MALS as well as personal experiences, photos, and videos which track my growth within the last couple years.
There is no single “authority” on MALS. The community of people who deal with MALS and the medical professionals who treat it are just beginning to understand what it is and how to treat it.
MALS Support Groups & Informative Websites
There is already a community of people heavily involved in advocating for people with this condition and promoting a greater understanding of it. Here are a couple of links to websites that contain a ton of information on this condition.
There are two facebook support groups for MALS that I’m aware of. These provide a community of people who are going through the same experience, led by administrators who’ve stuck around after healing from or helping a loved one heal from or deal with MALS and MALS surgery.
MALS AWARENESS https://www.facebook.com/groups/MALSAwarenessCommunity/
There are a few things I wish I would’ve understood about these groups before joining. They have a screening process to make sure the group stays on subject. This is normal, and you can absolutely join if you feel you could have MALS or if you are seeking more information as a caretaker, partner, parent, etc. I was worried when searching for answers because I didn’t want to join a space I didn’t belong in. It’s important to remember to stay respectful and follow the group rules the administrators put in place and it is okay to leave the group if it doesn't serve or help you.
There are a lot of extreme emotions for anyone struggling through a health crisis, so the space can quickly get negative if not carefully monitored. Some nights I felt that the people in these groups were the only ones who could relate to or understand what I was going through. And while that was true, the space is filled with all types of stories- the good and the bad. Most people who are in the groups are actively seeking a diagnosis and treatment, so it can seem pretty bleak at times- like everyone is suffering and there is no hope. But there is! There are also people who drop in and share their success stories. And there are a lot of very supportive people, lending an ear to people in need.
The best way I navigated these spaces, and the stress of seeking a diagnosis, was through work with a therapist and a deep understanding of boundaries. I wasn’t always perfect with it, but I tried not to spend too much time on social media pages, even if I felt they were helping me “connect” to others. I could fall into the trap of researching too much. Especially once I was already on my way to surgery - at that point there isn’t too much more you can do.
Within these support groups I’ve met people who are doing even more to advocate for MALS treatment than ever before. I know of various research projects and creative endeavors being pursued as a result of experiencing MALS, self published books and coloring books, info-graphs, and more. Upon entering the support groups it became clear that they experienced a lot of growth over the past few years. It makes us all hopeful for the exposure and understanding yet to come!
Progress Photos and Videos
Here is a collection of a few photos as my journey with MALS progressed. If you are reading along and are curious about how the incision heals over time, or what the whole process might look like, refer back to this section.
My Story and Timeline of Events
This is mostly a collection of posts I made on the facebook support groups, through my journey. It also contains insight I have now, a year after surgery. It should give people an understanding of what a “quick” diagnosis and treatment of MALS can look like.
I was initially diagnosed with MALS in an ER, having had a history of unresolved stomach issues. But it took many more tests, research and doctors visits to get an “official” diagnosis. The information has been simplified and reduced to the important moments and insights and is not a full picture of my experience with MALS. Unfortunately many people struggle for much longer than I did. Before they get diagnosed they end up on feeding tubes to sustain themselves, develop more complicated conditions and so on. Having these comorbidities can make it even more complicated to get a MALS diagnosis.
Early Diagnosis
March 7, 2021
First Post to MALS AWARENESS, a few days after an ER visit:
Hi everyone, I'm writing to introduce myself and to ask a few questions. I just got back from a three day stay in the ER. The ER doctor and GI doctor who performed an endoscopy suspect I may have MALS- the anatomy showed up on a CT with Contrast. I was told I need to make an appointment with a Vascular Surgeon to run MALS-specific tests. I don't even know if my insurance is going to cover them.
Here are some questions I have-
(I’ve answered my own questions, now about two years later.)
Q: Can MALS symptoms occur for 6 months, go away for a few years and reoccur?
A: Yes, MALS symptoms can come and go, but will ultimately “come back” and stay, with little to no relief. Even if you haven’t had years of stomach pain, or if your symptoms have been inconsistent, you could still potentially have MALS.
Q: Do doctors even consider surgery if your symptoms have gone away, but you have a history of the symptoms and you have the MALS anatomy? I'm so torn right now because I feel so close to an answer, but I'm almost afraid my symptoms will go away and I'll be back at square one. While I'd LOVE to be able to eat full meals without any pain, I'm very concerned that the symptoms would go away and then reoccur in a few years while I'm no longer on my parents insurance.
A: This is an example of the medical anxiety I was experiencing. Most doctors will not suggest surgery if you can maintain a livable lifestyle, but the decision is ultimately up to you. What constitutes “livable” is up to you, and different for everyone. If you feel surgery is worth the risk, after going through testing, and having conversations with doctors, then you are entitled to pursue it. There were medical professionals in my search for answers who gaslit me and said that everything was probably okay. This made my head spin and made me doubt the validity of my pain. It wasn’t something I needed to focus on at that moment, but made complete sense that I was worried about it.
Q: How long is the typical wait for an appointment to diagnose MALS and how long is the typical wait for a Block and for the surgery? Do you HAVE to get the Block before the surgery, and do you have to be showing symptoms the day you get the block? How long does it typically take to recover from the surgery? My guess is that all of these are very much a case by case basis, but any estimate would be helpful- I'm finding the first hand information I've gathered through this group to be very different from the studies I was googling.
A: Ultimately it all depends on where you live and what you have access to. I was able to be supported by my parents and could work very limited, part time hours. The time and energy I had left over from not working full time, I spent seeking answers, paying bills, making appointments, getting insurance approval, napping, going through pain attacks, understanding the diet my body could tolerate, preparing my own (small) meals, etc. It seems that it generally takes a few months to get to an appointment for a celiac plexus nerve block, which is part of the diagnosis criteria required for some surgeons who perform MALS correction surgeries. If you are working with a surgeon who has experience in treating MALS, it is likely they will require this test. On the day of the block you will press down where your celiac plexus nerve is located, at the bottom of your front rib cage, in the center. If you are dealing with MALS pain, that spot will be very tender to the touch. After you receive the celiac plexus block, you press down on that same area. If the block was successful, you won’t feel pain or tenderness in that spot. You can also try to “aggravate” the pain, by eating and doing things you are not normally able to. If the block is successful, these things will not trigger the usual MALS pain you might experience. The block only lasts for a few hours, but has the potential to give relief for several weeks or even months (mine didn’t). For me, it took about three to four months to recover from surgery to the point where I was eating better and doing “normal” things, but a year later I feel I am still dealing with some of the effects of the whole process.
I’m so thankful for this group. Hoping to find anyone with first hand experience of this condition, I searched the celiac artery compression syndrome hashtag on instagram and was led to this group. It seems my story is one of the best case scenarios. I am in awe of all of your experiences. I feel fortunate to have a dad who is an ER doctor, who advocates for and trusts me when I say I am in pain. However I still had a tough time in the hospital getting anyone to take me seriously or communicate with me and it was very intimidating. Groups like this give me so much hope. For now I'm just going to enjoy the small meals I am able to eat and hope for the best.
Events Leading Up to ER
Here is a little bit of my history and what led me to the ER.
Throughout my childhood I had a couple incidents of mysterious stomach pain, specifically after an appendectomy when I was twelve years old. But there was nothing majorly concerning or limiting.
In 2017 and 2018, I experienced stomach pain for about 6 months- constantly. I wouldn't say it was the worst pain in the world, but it was bad enough that it stopped me from going to social outings so I could lay at home instead. I went through lots of testing, bloodwork, endoscopy, check for celiac disease, SIBO, nothing came up. They said I had acid reflux so I took omeprazole for a while and changed my diet (ate less acidic foods) and only drank coffee on a full stomach. They also said I had "IBS"... not that that means anything. The pain persisted for a while but eventually went away on its own. I suspected maybe a food sensitivity but never went through with testing for it since the pain went away, with no change of the diet. Over the next few years my stomach would occasionally hurt and was a bit sensitive, but it was nothing extreme.
In 2021 my stomach slowly started hurting over the course of two weeks. The pain was minimal at first, but during the last week it was getting to the point where I couldn't focus at work- all I wanted to do was lay down in a fetal position. The only things that helped were taking a hot bath, laying down or trying to force myself to sleep through the pain. I was trying to push off going to the doctor, thinking maybe it was related to my menstrual cycle or something. But eventually the pain was so bad, after eating, that I made myself throw up and I almost immediately felt better. With no food in my system I felt totally fine, but if I ate my stomach would be in pain. I could only tolerate crackers and clear fluids. Since I hadn’t been able to eat for 48 hours, I decided to go to the ER and get some testing to make sure nothing major was happening.
Emergency Room Diagnosis
After preliminary testing and ruling out anything else, the doctor ordered a CT (he was going to order an X-Ray first, but he was in communication with my dad who pushed for an ultrasound of the gallbladder and a CT and luckily the doctor was gracious enough to collaborate with my dad and agreed to perform those tests).
The CT showed a compression of the celiac artery so the ER Dr consulted Vascular because he had read up on MALS and thought it might be the culprit. The vascular team wanted me to get an endoscopy and a work up through GI, even though I had had an endoscopy three years prior. So I was admitted overnight and got an endoscopy the next day. The endoscopy results were perfectly normal and the GI doctor seemed convinced that MALS was the only thing that makes sense.
A vascular surgeon came to me hours later and went through my history and said that we would have to do more testing through his office with his technicians (all three of the vascular surgeons seemed very weary of even discussing MALS with me, told me it is very rare and very unlikely). This doctor asked if the pain is related to my period, twice, seemed very unimpressed with my "history" and honestly I have no idea what to expect when I call their office tomorrow. He said I could be discharged that day, but apparently none of the doctors communicated and the vascular surgeon didn't leave any notes in the system so they held me overnight, keeping me on clear fluids only until the next morning. That morning I ordered a breakfast of an omelet and a small bagel- which I ate but was in a little bit of pain afterward- not as extreme as the two days prior to the hospital, but pain nonetheless. They had given me medicine for nausea this whole time, but the thing is I have never been nauseous, that's not how I would describe the pain. It is NOT nausea like I would experience during a flu or hangover. It's just a pain in the middle of my stomach that makes me want to lay down and curl up. Sometimes I can work through it, but when its really bad it can make me sweat, stops me from doing anything else, and then I start feeling sort of acid in my chest (like with acid reflux) while the pain continues in my abdomen and then I chose to throw up because I know it will make the pain go away. The pain can also be in my back a little bit, but it is more concentrated in the front. It also feels like it is in the middle of my abdomen by my rib cage but spreads to the rest of my stomach. Now I'm back home and I'm able to tolerate foods in small amounts- a bowl of oatmeal, wait an hour or so, a milkshake, wait, small bowl of pasta, wait, crackers and cheese, wait.... I had planned to start with liquids and work my way up to food but it seems I can tolerate food in small doses. I don't really want to try a big meal and see if it hurts because I really need to get back to work. The vascular surgeon left in my discharge instructions to follow up "if the pain continues or worsens” but I'm still going to follow up even though I can tolerate small doses of food, because this is the best lead I've ever had in regards to my stomach issues. That is where I'm at in my journey.
Seeking a Diagnosis and Further Information
March 8, 2021
Post to MALS Awareness
Question: I want to book a consultation with Dr. Hsu, but I would love to have all the scans I need before scheduling a consultation. I know he only *requires* a CT with IV contrast of the abdomen and pelvis- which I have, and it shows the MALS anatomy. But would it be beneficial to also have a Duplex Ultrasound with exhalation? The Vascular Surgery follow up when I got discharged from the hospital mentioned a CT angiogram and a Duplex, but is the CTA necessary if I already have a CT with contrast that shows the anatomy? Thanks!
Answer(s): The next step was a celiac plexus block, since my anatomy was confirmed. Hsu had me do an ultrasound in his office, but I didn’t do other testing before or during the consultation. Afterward I scheduled a HIDA scan and Gastric Emptying study to rule out all other possibilities, and scheduled a nerve block.
March 26, 2021
Post to MALS Awareness
Question: Has anyone else experienced MALS pain when laughing and crying, and if so how did you deal with it? (I tried searching this one and couldn’t find anything, so if you know this was already posted feel free to point me in that direction). Thanks!
Another thing to point out is even when I haven’t eaten my stomach and body hurts just because I’m so hungry. I’m not used to not eating... yet. I also can’t really put much pressure on my stomach especially when I’m going to sleep/ after I’ve eaten (a very small) “dinner”. Also started noticing pain with hiccup attacks.
Answer(s): This seemed to be a common thing amongst people who replied. Some of the tips were to try to laugh and speak in more of a “head voice” instead of using your diaphragm. For crying, someone suggested I take small sips of water to relax, which did seem to help.
Another tip was lying flat on a cold surface, such as tile or hardwood. Something I noticed helped me through a pain episode was taking a hot bath. I also used peppermint essential oil applied to my stomach and neck (be careful when using it for the first time, it can be very potent and is toxic for pets) for a cool relief.
It could be hard not to laugh when I thought something was funny, so I started saying out loud “oh that’s so funny!” That helped me through it.
Celiac Plexus Nerve Block
April 30, 2021
Post to MALS Awareness
I had a successful block today and was able to eat SO MUCH food. It felt amazing and I wouldn’t have gotten here so quickly if it weren’t for this group. So here’s a gratitude post and a big THANK YOU from me, to all of you.
I was super anxious even after I knew the block worked, waiting for the pain to come back. And even though my current bout of MALS pain has only been 2 1/2 months, it felt so unnatural to eat so much food. It’s such an odd thing we’re all going through and the mental gymnastics is constant.
For those wondering, Dr. Hsu’s office said I’ll probably be in for a late August surgery, maybe sooner. So right now it’s looking like surgery will be about four months out from the date of a successful block.
Thoughts After Recovery
I used the celiac plexus nerve block as something to look forward to. Although I had anxiety, wondering if it would or wouldn’t work for me, I found it better for my mental health to focus on the positive outcomes. There was only so much thinking about all the negative things that could happen, could do. The best advice I got from my therapist was to let my future self handle whatever could potentially go wrong. I didn’t need to worry about the “what-ifs” of the block not working, until that situation was a reality. Luckily for me, the block did work!
What did the nerve block entail? I packed a lot of food that I was dreaming of eating and drove to the hospital with my partner. After checking in and waiting, doing some paperwork and getting hooked up to an IV and put in a semi-private waiting room, they eventually took me to the operation room. There they had me lay down on my stomach and gave me a little sedation, but I was still awake. I couldn’t feel much, but they had a monitor right next to me which they were using to guide the nerve block into my solar plexus region, through my back. I was told I could look if I wanted to, and I did. For me that was comforting. They said I would feel a little pinch when the two large needles reached the nerve, and I did. It was more shocking than painful, but certainly not a pleasant feeling.
Afterward I was moved back into the semi-private room and let the sedation wear off a little bit. I didn’t wait too long, you want to go ahead and eat and test out the pain before the block wears off. I enjoyed tacos, chips and queso, pizza, coffee, and wine all without any pain! I went to Dr. Hsu’s office after the block for a check up and got ice cream after that.
The block wore off later in the day and my pain quickly returned. I’d been warned of a rough “come down” after the block, though I didn’t experience pain that was worse than what I’d already been dealing with.
A Deeper Understanding of MALS
At this point I had been researching MALS constantly and had navigated many phone calls to insurance and various doctors offices. Although I decided to pursue surgery with Dr. Richard Hsu at the Vascular Experts in Connecticut, I did get second and third opinions. Each of those were appointments in different cities with vascular surgeons- I went to one in NJ and one in PA.
I ultimately decided to go with Dr. Hsu because I felt he had an excellent understanding of MALS and his approach to treatment made sense to me. I was comforted by the fact that he had, at that time, performed over 500 surgeries. As I mentioned before, it is up to each individual what course of treatment and what doctor makes the most sense to them. Some people have seen success treating MALS with nerve blocks. Or they can manage the pain with various changes to lifestyle. Many people wonder how you decide whether or not to have surgery- my take is that you will just know. You will know when the pain becomes intolerable and whether or not your body can handle it any longer.
I chose to pursue surgery immediately and spent every bit of effort on getting to that point. My thought was to get surgery as soon as possible so that my body had the best chance at recovering quickly, when it was still relatively healthy. Dr. Hsu’s advice was that I stay as strong as possible and eat as much protein as possible.
Many many people asked me about my condition and what I was going through. I struggled to decide how deeply to explain my condition to them. My general rule of thumb was to give the person asking a brief description, and only explain further if they wanted to know more and if I felt comfortable sharing with them. [ Some people will want to give you a ton of advice or assume they know what you are going through. They are well meaning, but you have likely heard the same advice many other times. It is okay not to engage in a deep conversation with these people and end the conversation if you are feeling overwhelmed. I found a simple “thank you for your advice, but I don’t want to talk about it anymore right now” works well to disengage. Other people will be flat out rude and think you're lying or seeking attention. I’m lucky not to have experienced too much of that. But if you do, just remember that you know your body better than anyone else. ]
What even is MALS?
To me, everyone seems to have a different definition of MALs, because it shows up in people in remarkably different ways. These are the responses I gave people (and still give to people) when it comes up in conversation. They are not official definitions, rather my personal understanding and a way of communicating what the condition is, in a way that people seemed to understand.
My Short Answer
MALS is a rare condition that causes me extreme pain after eating and ruins my quality of life. Some people get relief from symptoms with surgery, but getting to that point and recovering from it can be very difficult.
My Medium Answer
MALS is a rarely diagnosed condition which stands for Median Arcuate Ligament Syndrome. It is a compression syndrome, which means your anatomy is compressing something - in this case the celiac artery and the celiac ganglion. People with MALs were born with a diaphragm that sits too low. The bottom part of their diaphragm - the median arcuate ligament- compresses the celiac artery and celiac ganglion (a bundle of nerves that aid digestion). This causes extreme pain, especially after eating or when exerting the diaphragm. Some people have MALs anatomy but do not have any pain. These people do not have “MALS”— to have MALS you must have some symptoms associated with your anatomy. Some people live pain free most of their lives, but an incident such as trauma to the stomach, pregnancy, or infection triggers pain. The pain can show up for a certain period of time, go away, then come back. But the thing with MALS is, eventually the pain will come back and never go away - unless you get surgery, one of the only known “solutions” for it. There are things you can do to try and alleviate symptoms, but in most cases the pain gets so unbearable that you would do anything to be rid of it.
My Long Answer
Everything I said above PLUS - Since MALS is so “rare” there are some disagreements in the medical AND patient community as to what it entails. Some doctors do not believe in MALS, or believe that it is so rare that they will not consider it a possible diagnosis.
There are a few general theories on what causes MALS pain.
Some believe that the Median Arcuate Ligament compresses the celiac artery (one of the major arteries off of the aorta) and the pain is the result of damaged nerves around the artery. This theory is generally known as neurogenic MALS, since it has everything to do with nerves. The process to fix MALS pain therefore involves surgery where the MAL is cut back (entirely- not just trimmed, because it can grow back) and the DAMAGED nerves are cut off. The nerves will regenerate after surgery. The area where the nerves are cut off is known as the celiac plexus (aka the solar plexus). You cannot take away ALL the nerves as it will cause permanent damage and ruin your digestive system. An experienced MALS surgeon would never remove the entire nerve bundle.
There has been success with this type of surgery, though the numbers are contested and peer review of the process has not currently been done. It can be hard to track the “success” of surgery, since many people have comorbidities, which we’ll get into later. Some people do not experience relief, even after this type of surgery, but that only seems to be the case with a small number of people.
The other belief is that the MAL compressing the celiac artery cuts off blood flow, and THAT is what causes pain. The solution to this is also surgery, but instead of, or in addition to cutting off the damaged nerves and cutting back the MAL, doctors can try ballooning the artery to restore blood flow OR place a stent in the artery to open up the celiac artery and allow for proper blood flow. The reason some doctors do not believe in this theory is because the celiac artery is one of three arteries coming off of the aorta. They believe that the superior mesenteric artery and renal artery provide enough blood flow from the heart so as not to cause any problems. Full disclosure- I was treated for neurogenic MALS and did not have any stent or ballooning, so I know less about this method.
My personal belief- and the belief of many- is that MALs can exist both ways. The proper course of treatment truly depends on what feels right to the patient.
Infographs
I felt lucky to find some infographs of what MALS looked like, some of which were even presented to me by doctors (but I knew they had just googled the image, and I already had it saved to my phone!) I love that there are more and more infographs as new patients get diagnosed. Everyone processes information differently and a visual that is helpful to some may not be helpful to others. Here is an infograph I made when learning all the information about MALS. It was helpful for me to create one of my own and gave me an understanding of the anatomy and the symptoms in a way that helped me communicate the information to other people more confidently.
Treatment & Surgery
Within BOTH theories of MALS there is also discussion about whether open, robotic assisted, or laparoscopic surgery is the best course of treatment. All of the MALS support groups have a lot of discussion surrounding this, and again it truly depends on an individual’s case and personal feelings about their condition.
It is my belief and understanding that laparoscopic or robotic surgery is a great option for those who want to try a less-invasive approach and have an easier recovery. There seems to be more of a risk of MALS pain eventually coming back after this form of surgery and some people end up needing a second or third surgery after going this route. Many people have a full recovery and do very, very well and only undergo a minimally invasive surgery!
Open surgery entails a much longer and tougher recovery, but most people have successful results if the surgery was done well. Some surgeon’s opinions on why this approach works well is because with open surgery they can feel the actual nerves and make sure to get rid of all the damaged nerves- they don’t miss anything.
Some people feel that vascular surgeons are more prone to push for “unnecessary” open surgery simply because that is how vascular surgeons are trained to operate. Other people feel general and/or pediatric surgeons push for laparoscopic or robotic assisted surgery simply because there is too much risk involved in open surgery and the recovery is too brutal. This is some of the discourse you’ll come across when speaking with people in the MALS community, and even in the compression syndrome community at large.
And that brings me to the type of surgeons that treat MALS-
What type of doctor should you consult? What type of tests should you get?
When consulting with doctors for MALS, you usually see vascular surgeons. Oftentimes you go through a Gastrointestinal doctor first. This is because MALS symptoms will probably look like GI issues (even though they are not GI)-- pain in stomach, trouble eating, trouble drinking, gastric issues, vomiting, diarrhea, etc. Usually a GI will end up referring you to a vascular surgeon, or you seek one out on your own. Sometimes a general surgeon can treat MALS, and there are some great general surgeons in the resources section of MALS Facebook support groups or online at various websites.
A MALS diagnosis is an “elimination diagnosis”. This means you have to test for all other possibilities before getting a diagnosis. You’ll usually get basic blood work done, test for allergies (celiac, lactose intolerance, etc), have an upper GI series (some get just an endoscopy, some get an endoscopy and colonoscopy), get a CT to establish that you have the anatomy and eventually get a gastric emptying study and HIDA scan to rule out other causes. And lastly, in many cases, a celiac plexus nerve block.
Many people don’t make it past the CT part of diagnosis, because doctors & technicians unfamiliar with MALS rule it out. They don’t see the anatomy on the scans. This is why it is important to have a doctor who is familiar with and who has treated MALS, look at your scans.
May 24 2021
Post to MALS Awareness
Question: For those who had open surgery, how much help did you need in recovery and for how long? I know it’s different for everyone but I’m trying to get some sort of estimate, and I would like to prepare for the worst case scenario. I live in an apartment with my boyfriend and our dog & I’m a 10 hour drive away from my family. My lease will be up two months after my surgery and I’m trying to decide whether to renew the lease, move elsewhere, or move back home with my parents for a few months.
Answer: I’m so thankful I renewed my lease and did not move! That would’ve been a lot to deal with. People who have had numerous surgeries all said the MALS surgery was particularly hard to recover from. I’ll get into the recovery process more in later posts, but overall it took me about two to four months to get back to things like exercise, eating full meals and working. It took me three weeks to get past the really bad pain and exhaustion from surgery. And, as always, everyone’s reactions and recovery from surgery are different and valid. I had my partner available to help me when I needed things and scheduled help from friends and family for things like cooking, dishwashing, laundry and dog-walking. What could’ve been amazing would be if I’d hired cleaners or a service to do some of these things. If you don’t have a caretaker or people to help, and it is within your means, I would encourage scheduling some sort of help so that you don’t feel too overwhelmed. Something I didn’t realize about recovery was that you have to be on top of your own medication and your own progress. You understand your body the best, and with guidance from your pain management doctor (assigned at surgery) you ultimately decide when to taper off what medications.
June 10 2021
Post to MALS Awareness
Question: I’m just curious- does anyone else start to get so used to MALs pain that you can’t even tell what your “normal” feels like or how mild or severe your pain is?
For reference my symptoms luckily aren’t too awful yet, I got an extremely early diagnosis. And as the constant/every day pain has crept in, I can’t even tell what “level” it’s at anymore. Usually after large (normal sized) meals I’ll feel a severe attack where I’m on the floor in pain- a 9 or 10. But this constant thing is less severe than that, but definitely not my “normal” either. Idk if it’s a 2? 4? 6? It’s not really important- just a thought I had and wondered if anyone else relates.
Answer: In retrospect, my symptoms were pretty awful and my pain was probably at a “5” at all times. And when I had a pain attack I would get up to a 9 or 10. There are many problems with pain scales and using them in care can be complicated, but I was interested in tracking my symptoms and pain throughout this process. People commenting on my post seemed to relate to not knowing what “normal” felt like anymore. When you are in constant pain you forget what being healthy even feels like. And while you can sometimes manage doing things and interact with the world “normally”, you might also find yourself in a lot of pain randomly or unable to cope. I had to give myself a lot of time to rest, and as I mentioned before, I did end up quitting my job and working very part time. I spent a lot of time, like a lot, in bed and on the bathroom floor. At this point I had lost about 15 pounds from not eating a lot and had started feeling weaker. A lot of people in my life didn’t ever see me in those moments, and since I “looked healthy” they might have even assumed that what I was going through wasn’t that tough, but I was struggling pretty badly. MALS can be tricky because it is invisible, people don’t see the symptoms unless they see you deal with a severe pain attack- at which point you are probably at home or hidden in the stall of some public restroom.
On one long weekend trip with friends, I experienced severe pain - per usual. At multiple moments I had to go into a separate room to lay down. I would lay there doing nothing but stare at the wall because my pain was so bad. My view for hours on a fun weekend trip was just a wall and a window with the blinds pulled down, this was my new normal and something anyone with MALS will understand.
A Podcast Discussing my Story
At this point in my journey, my friend Maddi Albregts, invited me to join her for an episode of her podcast. She also deals with various chronic and invisible illnesses and created the podcast, “Brain Fart,” to explore her own journey. If you are interested in listening to the podcast you can find the interview on Season Two, Episode Ten - “Interview with Jeanette (A Chat About MALS)”. It is linked below, though you can find it across all podcast platforms.
In this podcast I talk about my journey leading up to a MALS diagnosis and what it is like navigating the wait for surgery. If you’ve read this far, it might be a bit redundant. But if you’re an auditory learner, it could be exactly what you’re looking for.
What Helped the Pain while Waiting for Surgery
Everyone is different, but here are some things that would help me through the general pain of MALS and through pain "episodes".
Ice Packs and Heating Pads. A good ice pack made all the difference for me. As soon as I felt a pain attack coming on, I had two main reactions. Either, get in a hot bath, or grab my two ice packs, put one on the ground or bed to lay my back on, lay down, and put the other on my stomach. Sometimes I would do that with an ice pack on one side and a heating pad on another. This isn’t sponsored, but I have to give a link to the ice packs I used, because not to be dramatic, but they saved me. I still use these babies today and will never go back. https://natracure.com/products/flexikold-gel-cold-pack?variant=14596184113196
Weed. Not everyone can tolerate or has access to medical marijuana, but for me this helped so much in the time leading up to surgery. It allowed me to eat more food and even relax when feeling pain. It did not make my pain go away, but it helped me manage it better. It felt like my brain would say “Ope! You’re having a pain flare. Notice it, but keep going. You’ll get through this.”
Meditation. I had a pretty solid practice of meditation and yoga, but I had a hard time practicing them while dealing with all the pain. I found guided meditations more helpful than doing it myself, like I usually would. There are some excellent guided meditations for chronic pain, a quick google search will yield many results. Find one that you like and stick to it! I used the same guided meditation over and over again.
Movies, Books, TV, Podcasts and Conversations. Sometimes my pain episodes would last a couple hours. Sometimes I’d be in severe pain for a few hours, or a whole day. At these moments it was best for me to distract myself with something else. Although I love reading, that would sometimes require too much focus. And though I love movies, it could be hard to focus on those too. It was the mindless TV series that really saved the day, providing enough distraction and hope to get me through. Podcasts were also great because I could be hunched over in pain, eyes closed, and just listen away. And when those things didn’t work, or I got bored of them, I would sometimes call a friend or family member and ask them to tell me about their day. As I sat and waited for the pain to pass, I would let their story distract me. If you have any friends or family members who love to chat, this is a great time to utilize them!
Counting. Really a form of meditation, I guess, but counting is the thing I probably did most when dealing with pain. Just counting up to one hundred, and back down again. Or five seconds breathing in, holding three seconds, breathing out seven seconds. Any variation of that. Counting in Spanish, which is a lot more challenging for me. Counting let my brain focus on something other than the pain.
Food While Waiting for Surgery
Same as always, this is going to look very different for everyone. A lot of people are already on feeding tubes by the time they get a MALS diagnosis. But I was lucky enough to tolerate solid food- to an extent. The tricky part was figuring out what my body would and wouldn’t like.
Start Small. If you can still tolerate solids, but aren’t sure where to start, I suggest trying one thing at a time. After my ER visit, I started with milkshakes, soups, broth, and oatmeal.
Eventually I figured out I could tolerate oatmeal, rice and beans. Those were my staples and I expanded from there, adding in one food at a time.
Work with a Nutritionist. If it is possible, try to find a nutritionist and explain your situation. I had just one consultation with one and it was helpful because they added up all the calories and proteins I would ideally have in a day and suggested what an “optimal” intake could look like in a day. I wasn’t always able to get in as much food as they suggested, but it gave me a general goal to work towards. They crunched the numbers for me in a way that would’ve been too difficult for my scattered brain to figure out at that point.
Eat Slowly. For some people with MALS the idea of eating food slowly is tortuous. I’ve heard from people who prefer to scarff everything down quickly and get the pain over with quickly. For me, if I was eating “safe” foods, it was better to eat them slowly and if I started to feel pain, stop eating. I had to relearn what my body was asking for and couldn’t depend on my normal hunger cues to tell me when to eat. If I followed my hunger cues I would’ve been in too much pain far too often.
Sleep After Eating. I found it helpful to go to sleep after eating, especially after eating a “bigger” (normal sized) meal. Sometimes if I went straight to sleep I either wouldn’t experience the MALS pain, or I slept through it.
Try New Things, Cautiously. I was able to work my way up to eating oatmeal, rice, beans, fish (salmon and other light fishes like cod), Orgain protein shakes, juice, apples, nuts, candy and processed foods. For some people these are the worst triggers. The trick is finding what your body will accept and working that into your diet. Because of the lack of nutrients, people with MALS can sometimes be at risk for something called SIBO- small intestinal bacterial overgrowth, and other issues. Track everything and do your best to be as healthy as possible, but understand that leading up to surgery you are just doing your best to survive. For whatever reason, I didn’t get as much MALS pain while eating heavily processed foods. I lived on chips and candy and sometimes fast food (though the fried foods could be hard to handle). This might sound like a dream, but when your body can’t handle regular nutrients, you can’t eat vegetables and fruits and proteins, it quickly becomes a nightmare. Did I feel sick from not eating a good diet? Yes. Was that weakness and sickness better than the MALS pain? Yes. I tried a lot of things that didn’t work. Smoothies were a no go for me.
Make Note Of Your Food Triggers. I started tracking what were “safe” foods and what were “triggers.” I kept these in the notes app on my phone for quick and easy access. Some of my triggers were vegetables, most fruits, smoothies, anything in large quantities, too much dairy (though I could handle some), and most bread.
Take the advice that helps, leave the advice that doesn’t. If you are telling anyone about what you are struggling with and how you can’t eat, chances are they may try to give you advice. For me, some of that advice was very useful. Some of it was not helpful at all and I hated sitting through someone giving me their own personal anecdotes when I knew it wouldn’t work for me. So keep in mind that you know what is best for your body and you don’t have to try something just because someone suggests it.
Final Thoughts on Pre-Surgery Life
The best advice I could give is to keep your mental health at the forefront of your journey. This is something that is extremely hard to do. If it is possible, try to get a therapist. There are excellent online platforms out there that will pair you with a mental health professional at more affordable rates than traditional therapists. I didn’t stay with my therapist throughout my whole journey, because finances got in the way. But she was able to equip me with some tools that I continued to use throughout my journey.
Some tools my therapist gave me were focusing on the things I could control. She urged me to stay in the present and use gratitude in my daily life. This looked like affirmations for me, for some people this looks like prayer. When I got worked up about things I couldn’t control, like the dishes getting overwhelming, or feelings of failure or isolation, I tried to use it as an opportunity for positive thinking. Maybe I couldn’t get all the dishes done, but I could make myself a bowl of rice and beans. Maybe I felt like a failure for not working full time, but then I would remind myself of everything I’d been through and how wonderful it was that I was advocating for and taking control of my health.
That approach and scenario might sound reductive, but if you are able to work with someone who can help you through your own particular problems, they might be able to lead you to a point of view you didn’t see before.
My therapist also encouraged me to rely on my support system. I had to dedicate time to figuring out who could really be there for me and how to ask for help. I ended up depending on friends and neighbors who I wouldn’t have expected to help me, but it did require me reaching out and asking. Sometimes people won’t show up for you without being prompted to. I’ve read a lot of people’s stories where they were shocked because their church or neighborhood or friend group didn’t show up in the way they expected. You might find your expectations of people being broken, and that's okay. Not everyone has the capacity to help someone through a major health crisis, so focus on the people who can help and try to thank them, let them know how you appreciate them. I didn’t always know what I needed or what to ask for, but knowing that people were there to help was enough.
What I really needed throughout the journey were friendships and people who could listen to me and distract me. Goals and things to look forward to. Support at home with cleaning and managing daily life.
If a therapist isn’t an option, just try to keep in mind how much energy you are spending on negative thinking and how much energy you are spending thinking about things with a more hopeful mindset. Sometimes this condition can be absolutely hopeless. When I was in MALs pain, it was so hard to be present. Showering was exhausting . Getting dressed for the day felt like the biggest accomplishment. Not throwing up or having severe diarrhea every day? The biggest biggest thing! I took the small victories when they came, and I also spent a lot of time stuck in the negative mode. But it was helpful to be aware of it and know that I would soon be out of it. Therapy is not the magical cure, you cannot “think” your way out of the pain. But working toward positive thinking as much as possible did help me tolerate the long wait for surgery.
Surgery
August 29 2021
Post to MALS Awareness - 4 Days Post Op.
Hi everyone! I had (open) surgery with Dr. Hsu on 8/25 and want to post an update. First these groups have been so incredibly helpful and all the information provided has prepared me well for surgery. I had a rough first day but was able to walk a few hours after surgery (which was my choice, I thought it’s what Dr. Hsu wanted but then a couple of the nurses said they would not have had me walk on the day of surgery lol).
I had a good second day but started getting very very nauseous and had to stop using the pain pump.
Now a few days out I’ve been able to get the pain under control (taking dilaudid by mouth instead of through the IV works better for me) and we’re figuring out the nausea, but I still can’t eat any substantial amount. The nurses are amazing and I feel like I have so much support. My pain level has been up and down and the nausea is very bad, but I’ve had no regrets so far. It 100% feels worth it compared to constant and worsening MALS pain. I just wouldn’t say that it’s easy either. The nurses told me one patient ate a CHEESEBURGER the day after surgery and didn’t get nauseous… I wish.
Below I’ll lay out some things I’m glad I brought and some things I wish I brought.
Things I’m Glad I Brought to Surgery
A stuffed animal. (or small pillow) to hold against the incision, for ice packs, and for vomiting/coughing.
A heating pad. I have the heating pad constantly on my back and ice packs on the stomach. The ice packs are from the hospital and we keep refilling with ice.
A blanket. I get cold so easily so having a heavier blanket has been nice.
Your favorite pillow.There are plenty of pillows here so you don’t need to bring any, but I liked having one of my own. I’ve been sleeping with like 6 pillows to get comfortable.
A change of clothes. I’m much more comfortable in a loose t-shirt and loose shorts than in the hospital gown.
Crocs. Or Supportive, Easy, Slip on Shoes. I liked my crocs for walks better than the hospital socks.
My own shampoo and conditioner. I think they do provide some but it’s nice having the ones I like.
Chapstick that I love. No brainer.
Podcasts Cued Up. I really wasn’t up for TV, reading or talking, so listening to podcasts or music was/is helpful. I haven’t had the brain space to figure out what I want to listen to, so it was nice having a pre-planned list of podcasts to choose from and music playlists.
Peppermint essential oil. This has always helped me with nausea in the past, so I was so glad to have it. It doesn’t make the nausea go away at all but it does help me a little. Obviously the nausea medicine they give you does the real trick, but it’s taken me a while (and I’m still trying to figure out) what nausea medicine regime works for me.
Sunglasses. Really helpful for the nausea episodes. The room is pretty bright.
Email List. A friend of mine suggested creating an emailing list to update my friends and family all in one spot, and that worked out really well for me. I gave my dad the list of emails and he was sending updates to people as things moved along.
My Dad :) I’m lucky enough to be on the peds floor so he could stay with me (anyone 25 and under is put on the peds floor, if there is space available, and can have someone stay overnight with them). He has been so helpful and I definitely need his support. If I couldn’t have someone stay with me I think I would definitely want someone or multiple people visiting me daily (I believe the adult floor only allows one or two visitors right now?) but the nurses are amazing and will definitely take care of you if you don’t have anyone, you just may find yourself ringing for them a lot.
Things I Wish I Brought to Surgery (or ended up having someone bring me)
A Thera Cane Massager. My back has been so sore, part of it is spasms or surgical pain, but part of it is just from laying down and not being able to stretch as much as I normally do.
Protein powder that works for me. I’m having trouble with keeping food down, so I’m hoping the protein powder will work and I’ll get something more substantial than crackers.
Peanut Butter. I didn’t actually ask, they might have some here. But I had my dad get me some.
Popcorn. One of the snacks I’ve been able to tolerate even when I’m nauseous.
Mint Tea. Again they might have this, but when I asked for mint tea I got like a lemon tea, so it’s easy enough to just bring your own.
Any little food or snack that you know works really well for you. The cafeteria has a lot of options, but I got so nauseous I only wanted more snack-like foods, not actual meals.
Scent Free Lotion. For around the incision, it gets itchy and dry!
Fiber Gummies. Dr. Hsu recommended these. Idk if he tells everyone that or if it had to do with my blood work.
Reusable Ice Packs. They are providing me with ice packs (the kind you fill up with ice) but they start to leak after a while and for some reason they don’t have a lot of them- they have the type that you pop open and shake but those only last so long, and I’ve been needing ice 24/7. So I kind of wish I brought my own refillable ice pack, or one to keep in the freezer. There is a freezer where they keep snacks for the floor. Technically patients aren’t allowed to keep things in there… but… I’m dreaming of my reusable ice packs.
September 2 2021
Post to MALS Awareness - 8 Days Post Op
Post op with Hsu update. I’ll go through what my surgery experience at Stamford was like, and then I’ll update about what I’m doing back home. And as always- recovery is different for everyone!
I was on the pediatric floor— people 25 and under can be there for Dr. Hsu at Stamford. The nurses said if Dr. Hsu had it his way, 40 year olds could stay there but obviously they need to cut it off at some point. If peds is at full capacity THEN I would’ve been on the adult floor, but otherwise you’re automatically placed on peds. Anyway, I really relied on my dad the whole time in the hospital. The nurses were amazing but I was having such a tough time that I depended on him for everything. It was hard to get out of bed for a while. I would do it for the walks in the hall to try and get things moving, but I didn’t want to get out of bed just to grab a chapstick or a barf bag or do an ice pack refill, etc. It’s also nice because he helped me keep track of medicines, talked with the doctors and nurses if I was too weak to, ran to target to get things, turned on music for me, held my head while throwing up, helped me walk, rubbed my back, etc. It was such a huge comfort to have him and if there is any possibility to have someone with you- do it. If you can’t have someone with you overnight, try to have someone there during visitor hours. It would’ve been doable alone if I absolutely had to, but I would’ve been using the nurses a whole lot more. I’ve seen people who said they were okay doing it alone, so if you can’t have anyone with you, don’t panic. But for me it made a huge difference. You can see the bed he slept on in my pictures- it’s a couch and desk during the day that converts to a bed. He also ordered meals from the cafeteria.
Preparing for Surgery:
I had a morning surgery. No food after midnight, only sips of water and then nothing three hours before. I checked in through three different desks and then someone brought me (and my dad) back to the pre-op room, I changed into a gown and I had to pee in a cup- so I’m glad I didn’t pee when I woke up that morning!! I changed into a gown with everything off underneath- they do offer hospital underwear if you’re too uncomfortable wearing no underwear. Nurses and residents walk in and ask questions (lots of repeat questions) and set up your iv, which they did through my hand. Dr. Hsu comes in and asks if you still want surgery and says you can still back out at any time. They take you out of your room- your caretaker can go to the waiting room. If your caretaker is there, Dr. Hsu will walk out to them after surgery and explain how things went, if no one is there they have you provide a number with someone for him to call.
Going Into Surgery and Immediately After:
They wheel you back into the operating room and sedate you. You wake up in a post op room and you’re still pretty drugged up from the anesthesia. You have a pain pump that you can press every 10 minutes to give you drugs. It won’t administer more than the allotted amount. I was so sleepy and could barely keep my eyes open but was in a lot of pain, so I was just continually clicking the button, knowing it would only administer every 10 minutes but I couldn’t keep my eyes open to look for the green light. The nurse told me I had hit it over a hundred times and it only administered 12 times lol, I was barely conscious. They move you to your room, and if you have someone with you (at least on the peds floor) they’ll come to your room.
Post Surgery Days In Hospital:
The first day was kind of blurry and you’re really just getting through. Nurses come in and out and take vitals and give you medicine. They always ask what your pain level is. I think I ate a little something the first night? You have a catheter in after surgery, which I wasn’t expecting but it didn’t bother me (it does bother some people). I think they took it out the second day? You just have to make sure you can walk to the bathroom and then they’ll take it out. When they took it out and I put on my own underwear… heaven. It felt so nice lol.
My second day was okay and then things went downhill when I started getting nauseous which continued into the third day. I was glad I brought sunglasses and wore those when I was nauseous.
On the third or fourth day I had to stop using the pain pump because it made me so nauseous. When I finally started taking Dilaudid orally that helped a lot. I also didn’t realize when a spasm was happening at first so I wasn’t asking for Valium- the nurses said it can feel like a band/tightening around your back and front. Once I figured out what a muscle spasm felt like, I was able to ask for Dilaudid which helped the pain subside pretty quickly.
And the rest of the days are just more of the same, luckily we got the nausea mostly under control and I could keep down tiny amounts of food for the last three days. Dr. Hsu or Dr. Tim come in every day to check on you. The residents come in every morning, early. The nurses are amazing and I loved chatting with them. I thought I would hate being inside for so many days, but there was so much going on, I really didn’t care. And there is a window in each of the peds rooms! Sometimes it was actually too bright but they have two different types of shades you can pull down. I’m not sure about the adult rooms. Discharge was quick and simple, we picked up my drugs at the hospital’s pharmacy and at my post op I’ll ask the office to switch the orders back to my home pharmacy.
I brought various activities to the hospital but didn’t end up using most of them. (Books, journals, computers, things like that). I was glad I brought them, just in case.
Post Surgery Days At Home (or In Hotel, if you are traveling):
I made it back home 7 days post op (including day of surgery). I felt prepared after we figured out a good pain and nausea management plan. I was asking about each medicine when I was in the hospital and learning how to time it (the nurses on peds will bring you Tylenol and toradol for pain, and stool softeners, and maybe anti-nausea automatically but you have to ask for the heavier stuff based on your pain level). I never take medication so I had no idea what each one was at first, so I’m glad I was asking each time they gave it to me because now it’s easy to manage my medicine by myself at home.
The pharmacy will give you the generic brands even though the nurses say all the name brands, so when I got home I put tape on each bottle with the name brands so I know what I’m taking. I was thinking about using an app to manage the medicine, but I found writing it out easier. Sometimes I’ll be sleeping, so I’ll sleep through my allotted next dose time so the schedule changes- and that works for me, I’d rather sleep and take the medicine when I wake up.
A note on opioids or the more extreme drugs, my pain management doctor (Tim) said that the people who rely on them more heavily/frequently in the beginning have an easier and faster time weaning off of them because they are able to walk and stretch more. I know a lot of people are concerned with addiction, but don’t feel bad if you need to take them regularly for a while. He said around week three or four I would most likely be off of them. I’m sorry I don’t have advice for those who cannot take pain medicine, but I imagine that is something you would discuss in your pre-op appointments.
I also was using marijuana before surgery for my MALS pain and appetite. Just one or maybe two hits occasionally, nothing extreme. So I asked him about that. He said as I start weaning off the heavy drugs I can start incorporating that back, but if I’m taking the heavy stuff regularly not to pair it with weed.
I’m still only eating tiny amounts of food, but trying to slowly and gradually increase the amount. Attempting to stick to a low fodmap diet and can’t wait to start incorporating vegetables back into my diet (definitely cooked for a while, not raw). I am eating a lot of crackers, which aren’t low fodmap. But they’re perfect for eating before I take ibuprofen or Dilaudid so that I’m not taking them on an empty stomach. Might try smoothies soon. Orgain protein powder with oat milk and a banana has been working for me for breakfast. I want to try eggs but I’m so scared!! Once my incision heals more, I’ll be more willing to experiment with food because throwing up won’t hurt so much.
The car ride home was very difficult and it was only an hour and twenty minutes for me. I had ice packs and took my nausea medication, a barf bag, sunglasses and a stuffed animal to create a barrier between my stomach and the seat belt, but honestly? I was just holding the seat belt out with my hands. Focused on breathing and luckily made it back without vomiting.
My back pain got really bad the first night I was home and I was crying in pain, which I never even did in the hospital. I had taken all my medicine and was confused why it didn’t help. I guess they had upped my dose of Valium in the hospital and then dropped it back down for home, but said I could take a double dose if really needed for my spasms. So that’s what it was and it was just a minor detail I had missed when being discharged. So just make sure to discuss your medications with the nurses and be very clear about what you can and can’t take and what your routine at the hospital has been.
I felt so well taken care of in the hospital that I didn’t mind being there for so long, but once I got home I was so much more comfortable- and didn’t even realize I would be! It’s so nice having my own art around, my bathroom, my bed, my food, my plants, my dog etc.
I was walking as much as I could in the hospital, even if I wasn’t feeling so great and I think that really helped. Something that worked for my nausea was- taking zofran and waiting half an hour, then eating something soft very very slowly, then immediately walking around a little bit. When I sit back down it’s ice packs and heating pad. I also brought peppermint oil, as mentioned before and I would put that on my neck/temples/under my nose. If I started to get too nauseous I would take Benadryl through the iv which put me right to sleep. The first time it was actually making my whole body convulse- it was a spasm but I think also I had been so tense and holding so much that the Benadryl was forcing my body to relax. One time I started getting nauseous quickly and thought I could beat the vomiting by taking Benadryl, but then I did end up throwing up while half asleep and that was a bizarre feeling.
It took me a while to be comfortable enough to sleep on my side which was very difficult for me because I’m a side sleeper. My back was in pain and continues to hurt, but being able to change sleeping positions helps. And I’m stretching it every day- just light stretches for now. I’m planning to do PT and will ask for a script for that at my post op. I used lots of pillows on the hospital bed and would constantly adjust it to my comfort level- sometimes it felt better sleeping sitting up, sometimes laying down.
Practicing deep breathing also helps. They give you this little breathing device, an incentive spirometer, which I’m doing and I can slowly feel the depth of my breath increasing.
I’m allowing myself to sleep as much as I need and taking it really easy. I have my partner and my brother here helping me and friends that can step in and help too.
That’s all I can think of for now!
Recovery
September 6 2021
Post to MALS Awareness - 12 Days Post Op
I’m doing pretty well! At first I was staying very on top of taking all my meds at their intervals like I needed in the hospital, because I read so much about staying on top of the pain. But as of a couple days ago I’m only doing acetaminophen and Ibuprofen regularly, and taking the other stuff as needed/trying to space it out. I do need the Valium and Dilaudid, probably one or the other once a day and I’m still depending on the stool softeners. I’m getting a little low on some medications so I may call in for a refill, which I’ve heard can sometimes get tricky out of state- although I didn’t have trouble when they ordered it to my pharmacy by mistake while I was in the hospital.
I’m eating more regularly without nausea!! I tried ice cream (which obviously isn’t low fodmap) but it was a major trigger before and I love it so much. No issues, no MALS pain! I’ve also been able to reintroduce eggs and sourdough bread, both of which really triggered pain before. I’m looking forward to introducing low fodmap vegetables, cooked. Still taking it easy with food and not going too crazy but I can already eat bigger portions than before surgery.
I still use ice packs and my heating pad pretty much all the time. I’m walking about .75 miles a day (that’s a rough guess, I haven’t been measuring the distance) spread into two walks and I can get up and get things for myself in my apartment. But the majority of the day is resting/sitting/laying. Each day I have more energy and try to increase my activity. A couple days ago I accidentally pushed a little too hard on my walk (going for too long) and started experiencing some bad pain, but as soon as I got back inside to my heating pad and ice pack and took some medicine I was fine. I did wake up in the middle of that night in more pain than usual, which I attributed to the increased activity during the day. Sometimes I sleep through the night and sometimes I wake up in pain and have to refresh my ice pack and heating pad, and sometimes take medicine.
As far as additional help- it is most helpful to have someone/people to do meal prep- making soup, cooking salmon, etc. and to wash the dishes, because the way I would have to stand to do those tasks would be a bit draining. Help with Laundry and grocery shopping is also needed. And I have a very active dog, so I need help with him (although I think he senses I’m recovering because he’s been more gentle and laid back since I’ve been home). Otherwise I think I could ~manage~ on my own. But the help is definitely appreciated and makes things much easier on me. I still haven’t fully unpacked from the hospital. I’ll be hesitant going into the dreaded week three, but I’m enjoying the relief I have right now! I know the journey is different for everyone. I’ll keep y’all updated.
September 21 2021
Post to Hsu’s Post Op Gang(lion) - ~ One Month Post Op
I posted this to a facebook group and later realized I was describing a muscle spasm. I answer my own question below. This post is an excellent example of how everyone’s reaction to surgery will be slightly different and you have to listen to and learn what your body is trying to tell you. I experienced muscle spasms in a few different ways, they didn’t always feel how I thought they would or how the nurses described them.
Question. I’m four weeks post op and I’ve been dealing with back pain, which I know is normal. I’ve been able to manage it with Tylenol and occasionally Advil, but lately it’s getting pretty bad and waking me up at night. I take Tylenol, use an ice pack and heating pad and eventually fall back asleep. But I’m wondering if anyone has other tips or experienced something similar?
For me it’s just on the right side and it feels more muscular than anything. It’s different from the back pain I would get with a MALS episode and different from other back pain I experienced post op. But it has been since I was in the hospital. Feels more like I’ve pulled something while I was recovering in the hospital and unable to move much, but as I’ve started moving more and being able to stretch, it’s getting worse. Especially at night, so I figure I may be aggravating it in my sleep- I move a lot in my sleep. Maybe someone has a good sleeping position to suggest?
I’m starting PT soon and will definitely be asking the physical therapist but figured I’d check in here too. But should I call the pain management doctor before just waiting for PT? For the time being I might start taking Dilaudid again which I’ve been off of for a week or two, it’s that painful. It doesn’t feel like how I experienced spasms, it’s more sore muscle? When I was in the hospital the spasms that Valium helped with were more like a tightening around my whole core including pain in my back. But I have to say I was a little confused about how muscle spasms feel. Any advice appreciated, thanks everyone!!
Answer: I didn’t call the pain management doctor, I ended up taking Valium which is what helped and I continued to take it as needed. Sleeping elevated also helped ease the pain and I got a wedge pillow, which was very helpful.
October 13 2021
Post to Hsu’s Post Op Gang(lion) - Two Months Post Op
I’m nearing the end of two months post op and wanted to update about my progress.
How I Feel & Food
The third week really did end up being more difficult for me- lots of nausea, dizziness, constipation/diarrhea, even pooping in my pants a little because of miralax, but once I got out of it I was very uphill. I’m eating pretty much anything, haven’t had any nausea- but I do need to eat smaller meals. If I overeat I feel a bit rough. It’s not MALS pain, it’s more like a regular stomach ache - I’m assuming it’s just my stomach adjusting to eating good amounts of real food again. Trying to mostly stick to a low-fodmap diet but definitely cheating occasionally. I’m even drinking (a little bit of) alcohol again, which I didn’t expect to be doing at this point. Trying to gain weight back, but not pushing too hard because when I overdo it with food it’s unpleasant. Before MALS I was 120/125 lbs- my weight fluctuated during the months leading up to surgery as I figured out what was happening and how I could maintain weight & I was at about 114 going into surgery- I dropped down to 109 after surgery, and have gotten back up to 112 but have sort of plateaued there. I’m trying to increase the frequency of my eating, fitting snacks in (peanut butter, GF pretzels, cheese grapes and crackers, lactose free ice cream, etc). An app called “spoonful” has been sort of helpful- you can set up your diet to be “low fodmap” and scan barcodes on foods and it tells you if the product is low, medium, or high fodmap. It’s not perfect, and a lot of brands aren’t recorded- but it’s better than nothing and can be helpful at the grocery store- it’s a bit faster than googling every single snack I’m unsure about.
Physical Therapy
I started physical therapy at about five weeks post op and it’s been very helpful. My PT had never heard of MALs before (go figure)- so she decided to approach PT as she would for a person who tore their abdomen during pregnancy and to take cues off of me on what I can & can’t tolerate. We started small by focusing on core engagement and are building our way up. Right now at home I continue to do the core engagement, stretches and planks. And at PT I do the bike, slightly more intense core engagement and work with some equipment & bands to do some resistance training. I’m hoping to build back up to the point where I can run again, so I’ll stay in PT a little longer than she would normally keep someone who is just trying to get back to regular functioning. Building my core strength back up has also helped with back pain, and we are incorporating stretches that help my back, too.
At my two week post op with Dr. Hsu he said I was cleared to do everything and should start doing crunches to build back strength. I definitely wasn’t at a place where I could just jump right into crunches. I’m glad I waited an extra two weeks and started doing foundational work with a PT! That said, I was walking at least a mile almost every day and stretching- so I was still moving! Just not doing a whole ab routine… lol. Right now I’m feeling stronger than pre-surgery, but I’m certainly a long way away from feeling normal. The planks are fine, and the stationary bike has felt really nice (10 minutes, about 2 miles) - but the idea of going on a run sounds tough. Walks have been and continue to be good & I even went on a hike the other day that would’ve been pretty rough/exhausting pre-surgery and it mostly felt great!
My PT gave me tips on massaging the scar- coming at it from both sides and pushing in & pulling the skin out on either side. It’s helping break up the tissue & there are parts of the scar that are healing/flattening, but it’s still pretty raised. She also suggested building up tolerance to things rubbing against it- starting with a soft blanket, then a soft towel, then a rougher towel. Eventually you want it to feel like any other section of skin. It’s been tender as I’ve been massaging it every day, but I can feel it working- slowly. The top and bottom sections are the most raised, which is normal. I’m pretty sure there’s a bundle of internal stitches at those sections?
Here are some photos of the gentle core building exercises I’ve been working on with my PT. I've also included videos of slightly more intense PT, these were taken at three months post op.
Energy
With all that I am doing, I’m still not doing a lot. I really needed that first month to take everything super easy- I wasn’t feeling up to much at all! Not even reading. All I wanted was to watch tv, eat what food I could and go on my daily walks. Now I am a lot more active, have been seeing friends and doing more fun things, reading a lot, writing, driving, getting back into the swing of things. But I haven’t been working— I’m just starting to get back to that now. All that said- my energy is super low. I’m pretty tired and am sleeping a lot! Usually 9 hours a night, but could easily sleep 11 or 12. And a 30-90 minute nap, especially if I slept 8 hours or less the night before. I was struggling with energy levels before surgery, but assumed it was because of the drastic decrease in food. I know it’s still early in my recovery, so I’m not too worried about it- just want to keep track of it and pay attention to my body’s cues. I let my primary care doctor know and I’m going to see her this week. She’s thinking of adding some vitamins to my regime to see if they help.
Two Months Post Op Thoughts
I’m really glad I went into surgery expecting a brutal recovery. It truly was difficult for me in the hospital and the weeks following. Because I prepared for the worst and hoped for the best I think I was mentally ready for the difficult recovery. That said, I’ve been able to do so much in this second month and have been surprised with how good I feel. I know the dreaded third month is rounding the corner, and that recovery may be up and down. So right now I’m celebrating the wins and documenting my progress. Even this extra month of being able to eat and behave semi-normally has made it all worth it. So far, no regrets at all.
November 5 2021
Post to Hsu’s Post Op Gang(lion) - Two and a Half Months Post Op
I’m 10 weeks post op. Recovery has been very good so far- I still get nauseous and have a little bit of diarrhea occasionally, but have been eating normally and building up a lot of strength in PT. I just, out of nowhere, started experiencing a little stabbing (maybe cramping? But it was sharp) sensation to the right of my incision. I figure this is just normal, random recovery stuff? It’s not consistent, I just experienced it like five times in a row and then it went away. I haven’t experienced something like this in recovery, at least not since being out of the hospital, so I thought I’d check in here? Any insight appreciated, thanks!
Answer: This seemed to be normal, other people experienced a similar sensation. It could’ve been a muscle spasm or nerve re-growth. If I had gotten worried about it I could’ve reached out to the pain management doctor or my surgeon’s office. But at two and a half months post op you can definitely still expect some pain here and there.
Recovery and Renewal
I didn’t make any more updates on facebook groups after this. I started living my life, focusing on healing and getting back to the things I loved. I’ll recount my general feelings at a few more milestone moments, but this will all be in retrospect and maybe not as detailed.
Three Months Post OP
Late November 2021
I was really worried to be three months post op, but I didn’t experience too awful of a time. Some pain did come back and I mostly dealt with severe nausea and relied on the anti-nausea medicine I was taking. And dumping syndrome and constipation, though it was mostly under control.
I had one really bad experience with constipation and all I can say is, stay on top of your stool softeners for as long as you need them! I liked the stool softeners paired with fiber gummies better than Miralax or other laxatives. I found a combination that worked for me and stuck to it (and when I didn’t stick to it, I regretted it).
I continued PT and worked my way up to running again. In some ways it was hard to build strength back up, but it also seemed easier to run than ever before. In retrospect I’m not sure I was ever able to get in a “full” breath, and I now find all things involving the diaphragm a lot easier - running, deep breathing, core work, singing, lifting, the list goes on and on.
Refer to the photo gallery for videos of some of the PT exercises that were most useful to me.
I was able to enjoy the fall holidays, although I had to take it easy. I was super excited to get back into the swing of things, but I really had to prioritize rest and understand that it was okay to sit down and take a break- often.
I was able to cook some food for a holiday and even eat a plate with various different flavors and textures! I noticed every single flavor after surgery, each individual one. My food palette changed and I developed an aversion to onions and garlic, even the smell of them made me nauseous.
I felt able to be present with other people again, something MALS had taken away from me. When my body was in constant pain I couldn’t really ever focus.
I started running again and was feeling my energy slowly come back. It was even more important to focus on my mental health post-op and maintain meditation, affirmations, things to look forward to.
I had started smoking weed again when I wanted to really eat a lot of food or when I felt a bit nauseous - maybe once or twice a week? But I wasn’t taking any other medications at this point. I’ve certainly read experiences about people who still rely on medications to help at this point in recovery, and that is perfectly acceptable too. As always, everyone’s recovery is different.
Six Months Post OP
December 2021, January & February 2022
It was at this point I really started to turn a corner. I started feeling like myself again, and as that happened I realized what MALS had taken from me. My quality of life improved so drastically and though I still dealt with nausea and stomach pains occasionally, it was nothing compared to the MALS pain and the inability to eat.
At six months post op I was training for a Half Marathon which would be in the spring. I loved doing this because it gave me a goal to work toward, something to look forward to and something to hold me accountable. I planned to take it super easy and never pushed too hard in training, but I ended up getting better mileage than I’d had before surgery - I was running times closer to when I ran cross country in high school, without throwing up and feeling overworked. I think it is important to note that I was incorporating a lot of yoga and stretching into my routine too. As much as I was running, I was also letting my body release tension in ways I had never been capable of before.
Getting outside as much as possible was absolutely vital and I felt so fortunate to have a dog who demanded I get out every single day. I don’t know if I would’ve motivated myself to do that enough.
I still wasn’t working full time at this point, and I had some insecurities surrounding that fact. But I’m so grateful for the support I had from my parents, because the amount of energy it took to pull my life back together was extreme. I’ve now heard about people experiencing serotonin imbalances after open surgery, and I wouldn’t be surprised if that happened to me. I wish I had thought about that before surgery and created a plan with a therapist or my PCP to try and counteract it. As much as I was excited to be experiencing life again, there was a big shift happening in my point of view of the world and the way I chose to live in it. My bullshit meter was at zero, I had low tolerance for a lot of things. It’s not that I was short tempered, more that I wasn’t interested in people and things that weren’t serving me or my community at large. I had to understand my new level of energy and make sure to set firm boundaries around situations that felt draining to me.
One Year Post OP
March through August 2022
At the time of writing this, I am now one year post op from open surgery. My surgery was performed by Dr. Richard Hsu - he cut me open, cut back my median arcuate ligament all the way to the spine, removed damaged nerves on my celiac ganglion, sewed my diaphragm to stabilize it and stitched me back up, leaving a very neat little scar that you can hardly see anymore.
I’m in a much better place physically, mentally, emotionally, etc. I know my story may be an unusual one - there are so many people who deal with MALS for years on end with no relief and many misdiagnoses. There are many people who have comorbidities which make recovery so much more difficult or surgery impossible. I may not be fully “normal” - I still get bouts of nausea every once in a while, I sometimes get anxious about potential medical issues. I know it is possible that my symptoms could come back or I could have another compression syndrome, SIBO, POTS, etc. And I also know it is possible that we caught this early enough for it to be the only issue I deal with. And at the same time, I realize that as time moves forward, I may experience many more illnesses and health issues - that is simply a fact of life. There are so many people in this world who are struggling with invisible illness and I have a newfound understanding of how isolating and difficult that can be.
At one year post op I still don’t like wearing tight fitting bras or pants - it feels like they restrict my breath. I got a stomach flu and COVID during my recovery, which felt like setbacks and it took me longer to recover from them than I think it would’ve before MALS. But they were also kind of easy to deal with compared to everything else I’d been through- yay for new pain thresholds I guess? (Not really) Recovery certainly hasn’t been linear for me. I still get nausea occasionally and still might throw up if I push my body too hard (ie. running a half marathon or staying out late at night dancing). It’s been a learning curve getting to know my new body and new limits. I’m also so much stronger than before and I don’t have any pain around my solar plexus. My dog can step on my stomach without any reaction from me - before surgery if someone gently poked my stomach I would feel immense pain. And most importantly: I can eat! With the exception of garlic and onion, I can eat pretty much whatever I want. I still approach “new” foods cautiously and it's best if I eat slowly. But I’m able to nourish my body in a way that was impossible for me before surgery.
There are many things I feel I’ve learned that would’ve been useful knowledge going into this journey. I don’t know that anyone can fully describe what a condition like MALS feels like, but here are some of my key takeaways -
Doctors Don’t Know Everything. People who are fortunate enough to have avoided the United States healthcare system might not understand this, but doctors, surgeons and nurses are really just making very educated guesses. When you are getting a diagnosis for or dealing with a rare health issue, it is unlikely that you have a team of doctors fully supporting you and fighting tooth and nail to get you cured. Many people experience medical gaslighting and have bad experiences within hospitals. I think it is helpful to remember that healthcare professionals are just doing their best, and unfortunately their best may not always help you. It seems to me that a lot of the surgeons choosing to address compression syndromes get a lot of heat from their supervisors. These conditions are “rare” and don’t make the hospitals a lot of money - there is no profit in a surgery that alleviates all symptoms. While doctors may appear rude, condescending, or unhelpful, it is important to remember that their interaction with you has nothing to do with your self-worth. They might be facing a lot of pressure and uncertainty that you don’t see. They are also likely working excruciating hours and not practicing enough self care. (These are massive generalizations, but if you know or grew up around a doctor.. You know.) With that being said-
Go Into Medical Appointments with Support. This isn’t always possible, especially if you’ve made a trip to the emergency room. But it is super helpful to have all your medical information organized and to have a general understanding of any conditions you may have. I found it helpful to have my medical history written out and I would read it, verbatim, to my doctors. If you’re at a hospital or medical office, it is likely that you have to repeat your same story over and over. Because of this, it might be easy to drop the details, but sometimes the details are the difference between getting a diagnosis and not getting one.
Let's be honest, doctors can be intimidating! Like any good class presentation, it is best to go into the situation with as much confidence as possible. You are the only person who has a full understanding of your medical history and what is and isn’t normal for your body. If you feel that something is wrong or you feel like the doctor isn’t listening to you, don’t be afraid to speak up. But remember, medical professionals are also just humans and more often than not, they are trying their best. Leading with kindness can go a long way. But reporting mistreatment is also a viable option! Hospitals do sometimes listen to feedback, so if you have an experience on either end of the spectrum (extremely bad or extremely good) it can be helpful to report it to the hospital.
I also have to note that it was much easier for me, a white woman with a lot of education and a father who is a doctor, to navigate this whole system. I know everyone’s experience is different and this advice might not be helpful to other people! Even within my own experience I had surgeons doubting me and saying in the same breath- I knew more about MALS than they did, and also I probably didn’t have it.
If you can have a friend or family member go into your appointments with you, I also found that very helpful. As confident as I was that I had MALS, and as much as I pretended like I wasn’t scared, I would be very anxious going into appointments and it was reassuring having someone else there to listen and witness what was going on. If someone can’t come in with you physically, you can always ask if it is okay to facetime someone or call them on the phone. I was always told this was okay - don’t be afraid to ask for things you need.
You can also record your appointments and listen back to them later. I would often go in and focus so much on explaining my story clearly that I didn’t really process what the doctor said. It was helpful to go back and listen to the recordings and take notes after. Always ask before starting a recording.
Focus on your Mental Health. I’ve already mentioned this numerous times, but it can’t be said enough. If at all possible, try to focus on the potential positive outcomes more than the potential negative outcomes. That is a very tricky thing to navigate, especially when you want to be proactive and avoid potential issues. But for my own sake I wish I had focused a bit more on trusting that surgery could work. If I’m going to be thinking about potential outcomes, I might as well have given the positive outcomes equal or greater weight.
Ask For Help. MALS is really hard to get through alone. Whenever possible, ask for the help you need and don’t be ashamed of taking things slowly. Try not to pay too much attention to other people’s “benchmarks” and absolutely try not to compare yourself to other people your age who are in perfect health. Be gentle with yourself and your body and understand that it is working very hard to make you feel better. It’s okay to be upset and important to give those negative feelings space, just be cautious about how often you are frustrated. Feelings of hopelessness are normal, but if you’re feeling isolated and alone, one of the best things can be reaching out to someone and telling them how you feel. If you don’t want advice from other people it’s okay to say “I just want to rant, can I tell you about what I’m going through and then we can talk about something else?”
Recovery is Up and Down. Recovery, and the entire process of getting diagnosed is up and down. It looks different for everyone. There will be days that you feel relatively “normal” and days that you feel the worst pain you’ve ever felt. Everyone warns you about this in the support groups but it is so true- MALS is not linear!
You’ll Get Used to Being Hungry. At first the hunger pains I experienced were as difficult as the MALS pain, but I did get used to eating a much smaller amount of food. Adjusting back to eating normal amounts was a process, but at this point I’ve learned what hunger feels like again and I’m pretty good at staying on top of my body’s cues. If you have a history of disordered eating I would highly recommend being cautious about this and getting professional help both with pre-surgery and recovery.
Be Prepared to Make Your Own Food. (Or have someone else prepare your meals from scratch). Maybe it’s just me, but I’ve found it much easier to make my own food post pre and post surgery. While I’m thankful to be cooking and eating again, I’ve noticed that making my own food most of the time and cleaning it all up takes a lot of time and energy. It’s what I have to do to feel my best right now, so I’m adjusting my schedule as needed and coming up with ways to make the process easier. Meal prep is helpful and always having basics on hand that I can whip up quickly if I’m tired.
So much food has garlic and onion in it, and that is still a major trigger for me. Read the labels of pre-made food and you’ll likely notice ingredients that you don’t do well with. Even if people tell me something doesn’t have garlic in it, I check the label and it usually does.
Restaurants are Tricky, but Possible. At restaurants it is possible to ask for accommodations- anyone with a food allergy will already know this. Many times servers don’t know everything about a menu and they give you misguided advice or say “better not eat anything, we’re not sure about cross contamination.” The way I like to handle my intolerance to garlic and onion at a restaurant is this:
I often look at the menu ahead of time, but if that isn’t possible I tell the table that I need to focus for a minute to decide on my order. Everyone likes to chat when they sit down at a table, but I sometimes find this stressful because I want to be ready to go with options when the server comes by. Once I know what I want I join back into the conversation, I just need those couple of minutes to think.
I decide on one or two options that look okay and order it normally, then say “I have an allergy to garlic and onions, can you please make sure that they are not in the dish. If it is in the sauce you can leave the sauce out or have the chef replace it with whatever they like.” I say it’s an allergy, even though it’s technically an intolerance? People take allergies more seriously, and it does result in me being bent over in pain and/or throwing up later, so like.. It’s severe. Asking for this is usually very straightforward and they don’t mind accommodating, it’s just best to do it when you first place the order so the server can quickly tell the chef and come back to you before entering your order into the system if there are any problems.
If they come back to you and say the dish does actually have the ingredient in it, I usually ask if there is anything on the menu without garlic and onion and that they can order me any dish that doesn’t have it. The server would usually come by and give me a suggestion or two and I go with that.
Is it tedious and a little extra work for the server? Yes, and that’s why we respect our servers and tip very well, every time.
Another go-to for me if I can’t find anything on the menu is to order a couple sides. Restaurants can usually prepare just a plain chicken, salmon, or other protein. So especially before surgery I would order a side of rice and a side of salmon. This way I was still able to go out to restaurants with friends, which is such a big part of life I never knew I adored so much until it was taken away.
*I want to note here that restaurants must be a very different experience for anyone with a feeding tube. Since that wasn’t my experience I can’t really speak to it, but I don’t want to be limiting in suggesting these tips for ordering work for everyone.
Try to Keep Doing Things That Make You Happy. I didn’t realize it before MALS, but cooking and baking was a huge part of my life. I love preparing food, I love experimenting with flavors and textures and I missed cooking while I was dealing with MALS. I chose not to cook or bake, because it was really hard to be around the smells of food and I had no energy. In retrospect, I wish I had cooked or baked occasionally because I really missed the process. Even if I couldn’t eat the food, I could’ve given the gift of a good meal to someone else and let them enjoy it. I think that would’ve felt better than I thought.
I also felt like everything I loved to do was taken away from me when I was dealing with MALS pain, but it was important for me to focus on the things I could still do. I stopped running because I was trying to hard to maintain weight before surgery. Looking back, I think it would’ve been okay to go on an easy short run once in a while. It might’ve caused a flare up of pain, but I was also in constant pain anyway and the joy and endorphins that running gave me might’ve been worth it. It’s hard to say. Maybe I just didn’t have the energy.
I took a couple of trips prior to surgery and at the end of them I was very drained. It took me days to recover from the exhaustion of visiting a new place and being a bit more active than I was used to. And at the same time, these trips were everything to me. They gave me something to look forward to and provided a distraction from the depths of medical research, appointments, phone calls, etc. Being around family and friends gave me an outlet to remember my health was worth fighting for and it encouraged me to continue to seek answers and treatments, even when I felt hopeless.
There is Hope. I think hope is a huge part of anyone with a health issue’s journey. For me thinking about “Life 2.0” and all the things I would get back after surgery is what kept me going. At the same time, I think the process of recovery will be different than anything you could imagine. You might not ever get back to the same life you were living before.
At one year post op I still feel a little lower on energy than I used to. Maybe I’m just getting older, maybe I’m more stressed out, maybe I’m drinking less caffeine than I used to, maybe my hormones are all still rebalancing, maybe I have a comorbidity, maybe I’ll never be able to handle as much as I used to and you know what? I’m not worried about it. Because at least I can eat and enjoy my life again. I’m taking a break from thinking about what could be wrong with my health.
You could say that I’m still recovering. To me the biggest part of recovery has been getting my life back in order. The post op pain was hard, but picking up all the broken pieces of my life and putting them back together again has been even more tedious. I feel I’ve gotten better at managing my energy and that I approach things from a healthier standpoint. I’m allowing everything to take time and making plenty of room for rest and joy.
My experience doesn’t look exactly like anyone else’s and it’s certainly been a privileged one. But my hope is that bits of this essay will help someone else going through the crushing, aching, stabbing, haunting pain of MALS.
Remember that you are not alone in your pain and I hope you can always find a sliver of light in the darkness to keep you moving.