Chronic Wholeness

Thursday, March 14, 2019

Tips for Swimming with an Ostomy

I normally try to write posts in an order of sorts, but right now, am choosing to right on what it is easiest. For now, this is practical tips from real life, rather than in-depth information on conditions.

I wrote about unplanned, emergency surgery, but no details regarding what those surgeries actually were. This blog is anonymous on purpose to allow me to write about topics that can be uncomfortable to talk about. However, even with anonymity, I find it hard to write about some things. The first GI surgery was repairing complete rectal prolapse thanks to tissue laxity from Ehlers-Danlos syndrome. I am planning to write more about this in the future. The second surgery was addressing bowel perforation, and cleaning things up, resulted in a temporary colostomy to allow my GI tract to rest and heal. It was a rough recovery in ICU as I was already malnourished from first GI surgery complications—difficulty advancing ability to eat. I also do not like surprises. I like to know what I am in for. I research things, plan ahead the best I can. I go into every procedure hoping for the best but preparing for the worst. However, no one, myself, surgeon, etc. saw this scenario coming. I work to accept what life throws at me. But, I am struggling to accept the colostomy. I did not ask for it, I do not want it, it is one more set of tasks I have to take care of. But, it saved my life. I am choosing to be grateful for it, am choosing to accept it for now, but most likely will be reversing it once recovered enough to be able.

One of my major concerns when I discovered I had a colostomy, was how it would affect swimming, pool therapy. I asked the ostomy nurse and my surgeon about this while still in the ICU, even though I knew I was nowhere near being able to consider getting into a pool. I couldn’t walk very far and was slow, was not allowed out of bed without aid because of IVs and other lines. But, swimming was so important, that it was a burning question. Both assured me swimming is very doable and surgeon told me stories of various athletes with ostomies.

Being new to the colostomy, afraid of leaks or issues, I was really nervous with first attempt once surgeon cleared me for pool about a month post op. Because I was still weak, deconditioned from lengthy hospital stay, malnutrition after surgeries, first pool trip was short and sweet. I taped the wafer down with kinesiology tape as that was what I had on hand, knew from taping joints that kinesiology tape stays on in the pool. I also wore a mild compression tank top to help hold appliance securely in place, then regular swimsuit over top, except so swollen still through abdomen, I wore an older, sort of stretched out suit. Things went well. Appliance stayed put, tape stayed on, no issues. As I slowly got stronger, pool sessions slowly got longer. I also experimented with other things. Online support groups are amazing! I asked for advice from others with ostomies who swam. I was given numerous ideas of things to try. Ostomy nurse suggested contacting companies, asking about free samples to try before ordering something that might end up not working. I did so. I tried barrier extenders and learned that when exposed to water, these swell, get gummy, sticky, messy, and allow water to reach wafer. They also pull up the wafer when removing the gooey strips. I used Hy Tape, which sounded amazing. It is waterproof, designed for sensitive skin, is latex-free, etc. That was my most disappointing experiment as it was the one I most expected to help. The tape did not stay stuck, allowed water under wafer, etc. I am only 12 weeks post op, so only been swimming several weeks, but have already figured out that the appliance stays in place fine without any additional strategies. Tape is not needed, tank top not needed, belt not needed, special swim suit not needed. I do my normal appliance routine, wear my regular one piece swimsuit that I have used for years (keep replacing as they wear out with the same thing). If I am nearing change day for the appliance, then I will sometimes tape it down with kinesiology tape and/or wear the simple little belt that clips onto the ostomy bag. I am back up to 2-hour sessions at a time in the pool with a mix of lap swimming, pool walking, and physical therapy exercises in the pool. All going well. As I become aware of other possible aids, I may try them, but for now, I have a system that works for me. I am so grateful to be back to swimming, even with an ostomy. When I was assured in ICU that swimming was possible, I envisioned it being a huge ordeal, taking months to be able to get to that point. I was pleasantly surprised to learn that no, or very little, additional steps need to be taken to be able to be in the pool with an ostomy. I was also grateful to discover the time frame was based on recovery from surgery, incision closure, similar to other surgeries. The ostomy itself had no bearing. My body thrives in water, so being able to be back in the pool has aided recovery and rehab from surgeries. This is one more hurdle behind me on the road to recovery.

Wednesday, February 6, 2019

Chronic Invisible Illness: Working as a Team

One of the character qualities I often feel like I lost with chronic illness is that of independence. The reality of complex illness is that it requires a lot of support and an entire team of medical professionals. It has been a journey of being able to accept that I need help. I am incredibly grateful for the support of my family and friends, also that of my medical team.

Tuesday, January 8, 2019

Chronic Invisible Illness: When the Unexpected Happens

Something I have learned over the years of chronic illness is that the only predictable thing about illness, is that it is unpredictable. This held true with a recent procedure. I was scheduled for an abdominal gastrointestinal surgery to repair some issues due to lax tissues from Ehlers-Danlos syndrome (EDS). The surgery went well, my surgeon was pleased. He took extra precautions because of the EDS. We knew I'd be in the hospital anywhere from a few days, up to a week. Well, at a week, I was still in the hospital, no closer to going home. I was struggling with being able to advance diet back toward normal, but this needed done before I could go home. As days passed, I struggled more. I eventually ended up back on clear liquids only (first stage of trying to advance diet). I also was getting more abdominal pain, more bloating/swelling, spiking fevers at night, etc. My surgeon was watching me, checking labs, ordering abdominal x-rays, etc. As I continued to struggle, he had me started on IV nutrition to help support since I was not eating enough. IV nutrition requires placement of a PICC line (peripherally inserted central catheter). But, once the PICC line was placed, then labs could be drawn from it rather than being stuck each time. (And, why do hospitals think 4 am is a good time to draw labs and turn on the bright overhead lights?) Anyway, surgeon ordered an abdominal CT scan. Once he had those results, he came by, said he was planning exploratory surgery with goal of being in the OR in the next hour....this was a Saturday morning. Wow! It was a lengthy surgery. It turns out I had a perforated bowel and that all needed cleaned up, damaged part of bowel resected. I did not wake from surgery until middle of the night so had no idea what all had happened. I knew I woke with even more tubes. I learned I was in ICU, not back in the adult inpatient unit I had been after the prior surgery. I was on oxygen, CO2 output being measured because of being on IV morphine, had a nasogastric (NG) tube suctioning (gross), numerous IV lines for nutrition, antibiotics, fluids, various medications, morphine, etc. They wanted me up walking, but I was so weak, light headed, unstable, that we ended up with a walker for stability for me, two people going with to help with the two IV poles, oxygen tank, being able to hold onto me via gait belt, etc. We were quite the little parade.

This second surgery really wiped me out. I go into every surgery as strong as possible physically, mentally, emotionally. An emergency surgery left me no time to prepare, plus I was already physically weak from the prior surgery, difficulty eating, infection, etc. It took work to try to find the positive. it took work to choose to smile. Once I realized how close of a call I'd had, I was grateful to be alive, grateful to be well cared for. I knew no one wanted what had happened to happen, that all were trying to help me get well, that all were rooting for me to go home ASAP, and hopefully in time for Christmas. My surgeon was super strict one morning about the compression stockings. We explained I had pressure sores starting. It turns out that was the morning my platelet count spiked critically high. We found a compromise of using the calf compression sleeves, but no compression stockings.

I was certainly deemed complex. Apparently healthy looking when admitted initially, but prone to pressure ulcers, struggle to recover from first surgery, need second surgery, struggle to recover from second surgery, etc. White count very high, platelet count very high, heart rate high. Cardiology and hematology called in.

After the second surgery, I struggled more with back pain, neck pain, and shoulder pain. Physical therapist was there to help take me for walks, but he helped problem solve positioning for me to try to relieve the other pain. Through trial and error, figured out how to sort of mimic cross between my zero gravity chair and my pillow nest in my bed at home. That helped. It was still very hard to sleep. However, more than one nurse commented on how comfortable my "nest" looked.

Progress was counted by removal of tubes. The one I was most excited to get rid of was the NG tube. I had started gagging on it for no reason by the time it was pulled. Removal was not fun, but so glad to have it gone. It still sort of felt like it was there for another day or so. I was not really claustrophobic, but had gotten so I did not want any face tubes snug, kept loosening oxygen and CO2 lines. This was partly because of nausea that was severe at times and anything close to my neck or nose/mouth made things worse. In fact, some nurses let me have a break from the CO2 tube when nausea was at its worst. The last lines to go were the IV nutrition, IV antibiotics, and I think one other. Then, I was finally allowed up by myself! I could take myself to the bathroom without help! I could take myself for walks in the hallway by myself! My nurse said she did not care where I went as long as I stayed on the floor and out of the critical section of ICU. (I was in a step-down ICU, but all of ICU was the same floor).

The recent events may seem like not much good happened. However, I am alive, had excellent care. My family was supportive and kept me going on days when I wanted to give up. I also had the opportunity to educate various other providers on EDS and mast cell activation syndrome. Although, one evening at shift change, when the day nurse was explaining to the incoming night nurse what was going on with me (lengthy process). The night nurse asked me what type of EDS I had. Most asked what EDS is, are not aware there are multiple types. So, I knew she knew more. It turns out she has a child with EDS.

Something else I learned. I may be a dietitian, trained in nutrition, know in theory how to advance diet post-op GI surgeries. However, that does not mean all bodies respond well to standard protocol, and mine certainly did not. Plus, it is impossible to be fully objective with oneself. Also, if sugar, artificial sweeteners are recommend against early post-op, then why do the standard supplements used right after surgery contain so much sugar, or other suspicious ingredients? I avoided the supplements after second surgery as I was afraid of them after what happened after first surgery and trying to use them to keep protein intake up. It helped I was on IV nutrition for second surgery, thus had less pressure to rush advancing diet. Also, one of the most helpful pieces of advice I was given early in trying to start eating post-op second surgery was by my surgeon. He said if it sounded good, try. As crazy as it sounds, the first thing that actually sounded good was tomato soup. This is also the first food I successfully kept down. So, it became my "safe" food that I ordered every meal in addition to whatever I was trying next. Mashed potatoes were another early "safe" food. I tend to come from an intuitive eating perspective, but also science-based. These often go together, but not always. Tomato soup did not really make sense as a good first food, but intuitively, it worked. I also learned that one can pick and choose off of a hospital menu. Just because an entrée comes with specific sides per the menu, does not mean one has to have those sides. I did a lot of substituting. Otherwise, I was leaving a lot uneaten that I was not ready to try yet.

This whole situation was quite the learning experience and I suspect will continue to be for a while. I am grateful to be home, to be sleeping better, no more blood sugar checks, insulin injections, lab draws, Lovenox injections, etc. I am still thin, weak, tired. I have a lot of healing and recovery ahead of me. It is hard to be patient. Eating, walking, self-care are tedious, tiring. But, these are my tasks for now. I have regained strength, weight, and muscle after other surgeries. With these surgeries, the loss is more global, but I can regain again, even if it takes longer. I am choosing to move forward with hope. Hope that recovery goes well, hope that these surgeries give some amount of relief.

Wednesday, August 29, 2018

Social Media Contact Information

Updated contact info! Yes, I have Instagram now! No, I do not know how to use it! Learning....please bear with me.

Chronic Wholeness

Pursuing wholeness in brokenness, strength in weakness, health in illness.

Tips When Traveling for Surgery

I have had multiple surgeries, some local, some long distance. I have another long distance surgery coming up, thus have been preparing for travel for post-op, thinking back over the past travel after surgeries, what went well, what did not, etc.

First long distance surgery, two of my sisters were doing the driving and navigating. I was already flared from travel earlier in the week, but for some reason we thought it was a great idea to leave super early morning of surgery, drive the three hours, then outpatient surgery, drive back yet same day. I was exhausted, flared, surgeon gave different pain medication than I was used to and was dealing with side effects from that, surgery was a Friday, so sort of stuck over the weekend. When I was scheduled for the next long distance surgery a few years later, I was really nervous based on this initial experience. However, for the next surgery, surgeon asked that I plan to stay overnight in the area, then start PT there next morning with one of his recommended PTs, then OK to travel home after that. Surgery time was early enough that I drove up (with a sister) day before surgery. That worked so much better!

For the trip home, I was recommended by surgeon's office to stop often to move around, but physical therapist had told my sister if I was asleep, to just keep driving. This meant she drove past a rest stop, I woke about ten minutes later stiff, uncomfortable, so had to find somewhere to stop, let me get out to "walk" (with crutches) a bit. Had quite a bit of swelling by the time we got home. With the next long distance surgery, I was more awake, and we just made sure to touch base, stop often. That went better.

For travel after surgery, I recline the seat fully, have something to prop surgical side with--foot if leg-related surgery, arm if arm-related, etc. Pillows for support, throw blankets to roll for support, or to cover if chilled from icing. I have my good ice packs that stay cold longer with me.

This time will be a longer distance and shoulder instead of hips. Apprehensive. Planning to carry forward all that has worked in the past, plus a few new ideas. Hotel reservations are made for same hotel as last two surgeries as they have done well. They have let us borrow a wheel chair to get me from car to room after surgery, and from room to car when checking out. They have let me keep my ice packs in their freezer so they are really good and cold prior to travel. Traveling there day before surgery, staying overnight, then surgery, stay overnight after surgery, then surgeon said alright to travel home. Planning to bring ice machine again as that has helped in the hotel. However this time, we are planning to run it in the car as well on the way home.

Update written post-op, post-travel
The plans went well! For being nervous about the distance, of travel itself, of hotel set up for shoulder recovery, etc., things went so well. So grateful! I had brought my zero gravity lawn chair that I have used with other recoveries, my cold therapy machine and used both at the hotel and it worked well. (Links to both are in this post on preparing for surgery.) The cold therapy machine worked quite well in the car, too! I started out with my ice packs since they were good and cold and changed them every stop, or about every hour or so. About halfway through the trip, ice packs were exhausted, warm and squishy, not helpful. So, switched to using the cold therapy machine. It could not get as cold as ice packs had, but was far more effective than spent ice packs! My sister had a converter so we plugged that into a cigarette lighter, then the ice machine into that, thus could run it continuously. Normally, continuous icing is not a good idea, but with bulky post-surgery bandages, the cold from constant icing still cannot truly penetrate to level of incisions/surgical site. I have learned to ice 24/7 until bulky bandage is off. If the ice pack or pad to ice machine extends beyond bandage to bare skin, I make sure to have a barrier between it and skin that is as thick as the bandage to avoid frost-bite. I also check skin often to make sure things are OK.

What I learned
A zero gravity chair makes for a comfy recovery spot post-op shoulder. However, because it has no sides to speak of above arm rests, we had the chair between end of bed and a desk at the hotel and them stuffed pillows between desk and chair and between bed and chair for support to help hold in place the pillows I was using to support me. Once home, I figured out taking a large blanket and putting it on top of the body pillow I use for a cushion, then putting in all of my rolled blankets and pillows for support. I wrap myself and all of my support items into the chair, holding all in place. It actually works quite well, is very comfortable and I have been sleeping much better than pre-op.

Advance planning can really help! The travel went so much better than I had thought and hoped. Thinking ahead and having things available was worth it and helped things go smoothly.

Saturday, August 18, 2018

Tips for Preparing for Surgery

Surgery can seem scary and preparations may feel overwhelming. However, with some planning and tips, it can go pretty smoothly. I have had multiple surgeries of various types. I find myself once again preparing for more surgery. This time, it will be my first shoulder surgery. Thus, although I know the basics of preparing for surgery, there are some things I am less certain regarding shoulder recovery.

Scheduling
Surgery is scheduled, pre-op physical with primary care physician is scheduled and completed. Physical therapy is scheduled to start one week post-op as surgeon directed, and we scheduled out the first couple of weeks post-op, will refine once we know details after surgery. I scheduled an appointment with primary care for post-op to remove sutures since surgeon OK'd this. The first two post-op appointments with my surgeon are also already scheduled. I was already scheduled and fitted for the sling for after surgery.

Planning
This includes surgery planning with surgeon, anesthesiologist, and the rest of the medical team. But, it is also my planning regarding what I need to have done prior to surgery. For the orthopedic surgery center this surgery will be and my last couple of surgeries took place, I need to complete and submit an online pre-op form in addition to the form my primary care doctor needs to fill out at the physical. I will need to pick up hard copies of the form from primary care to take with me. I called and spoke with an anesthesiologist at the surgery center, verifying they are aware I need some extra precautions, but that what they did last time worked well.

Meals
I try to plan and prepare some meals prior to surgery to take some stress of from early recovery. I also know a lot of times I am tired, not very hungry, but need the nutrients, so plan nutrient dense, easy snacks. For me, this means a batch of homemade granola bars with protein powder added for a boost. Carrot sticks and peanut butter, bell pepper strips and hummus, celery and mix of peanut butter and cream cheese, hard boiled eggs, plain Greek yogurt, cheese, fruit and nuts, etc. Smoothies are super easy--Greek yogurt, frozen fruit, or frozen banana, peanut butter, milk. Soups, broth, etc. I strive to emphasize protein and veggies, minimize sugar for the final weeks before and initial months after surgeries. This is my first surgery not living alone, thus also having to make sure there is enough to feed everyone. Plan is a large batch of chili, and one of chicken and green beans. These can then be portioned and frozen, thawed, reheated as needed. After surgery, I really try to emphasize protein and veggies to support healing. (Resources listed below!)

Medications
Surgeon typically prescribes medications for post-op. However, I am already on other medications. I need to make sure I have everything refilled and on hand prior to surgery. I also need to make sure additional ones for aiding recovery are also on hand. Stool softeners can be needed for some--with me pain medications do not bother, but anesthesia does. With last surgery, we started probiotics a month prior to surgery and started stool softener after surgery as I normally do as proactive step, had to stop next day as things did not need any help and I was heading toward opposite issue. I have already started probiotics again this time, too, but will still plan on having stool softener available.

Miscellaneous
Making sure no trip hazards or anything, checking to verify my ice machine is still in working order after being unused a few months, after constant use after two hip surgeries. Making sure I have water bottles frozen to chill the ice machine, that my ice packs are all frozen and ready.

Recovery
I set up a recovery station for after surgeries. It is somewhere comfortable (bed is usual location), with power strip for phone cord, laptop cord, ice machine cord, night light, etc. This time, we rearranged a bit to make sure I have option of either bed or zero gravity chair, both right next to power strip. When I was asking my physical therapist for tips, he said bed is not likely to go well, plan on recliner. Well, I do not have a recliner but do have a zero gravity lawn chair I have used after hip surgeries. He said with pillows that should be just fine.

Surgery Clothing
Clothing has a way of being more complicated after surgery. I am still not exactly certain what will work best to wear to/from a shoulder surgery, but will be finding out! I will probably end up in shorts and tank top, slip on shoes, lightweight hoodie along if needed. With shoulder painful now, I live in shorts and tank tops as tank tops can be stepped into and pulled up from the bottom sort of like pants. This is much easier than trying to get on overhead as normal. Some of my larger, stretchier t-shirts let me step in and pull up, too. However, they tend to be harder to get arms situated than with tank tops.

Mental and Emotional
I suspect many are aware that surgery requires physical healing. It is trauma to the body even if it is planned, controlled, directed. However, the surgery and anesthesia can take a toll mentally and emotionally. The recovery process can also require resilience. Part of my pre-op ritual includes celebrating the day before surgery everything I can do no matter how limited, knowing I will lose it all the next day. However, I know the loss will be temporary and with time and work, the ability can be regained. I do need to be realistic about expectations and time frames. I can be a limit pusher, but tend to be very cautious after surgery to avoid compromising recovery. I have to remind myself that recovery is worth being patient and letting my body heal at its own pace. I do my best to support my body with good nutrition, what activity I can do, mental health, etc. I think it worth mentioning at this point that surgery is not the time to be worrying about weight gain/loss. The focus needs to be on healing. Healing takes more energy, even if not very active. Thus good nutrition is important. (See resources below.)

Travel
Surgery will take place out of state again. Thus, planning for travel as well as for surgery. This means hotel reservations, driver for long distance travel, not just trip to/from surgery. I will bring my ice/cooling machine with me for use in the hotel as I have done with hip surgeries. But, this time we are planning to try running it in the car as well on the return trip after surgery. I will also bring instant ice packs.

Shopping list ideas/links
Tank tops that velcro! I was given a couple of these to try. So nice!
Slip-on shoes These were invaluable after hip surgeries, but suspecting it will be a while before tying shoes after shoulder surgery as well.
Zero gravity chair I got mine on sale locally, but this looks the same. I love mine and have used it so much. A body pillow makes the perfect cushion.
Ice machine This is the one I have and it is still going strong. Totally worth the investment.
Protein powder This is the one I have used most, is unflavored so can be used in almost anything, has no crazy additives that bother allergies pr mast cell issues for me.
Shower seat This one looks like mine. Uncertain if it is the same. Really not sure if this is even needed. I have mine from hip surgeries, so will see.

Nutrition for recovery resources
Nutrition for injury recovery (applicable to healing from surgery)
Pre- and post-op nutrition
Nutrition for healing

With some advance planning, surgery can be made less stressful. This allows being able to just relax and recover afterward.

Tuesday, May 1, 2018

Raising Awareness: Ehlers-Danlos Syndrome Diagnosis

May is Ehlers-Danlos syndrome awareness month. I figure this is a good time to share more about my story with being diagnosed with Ehlers-Danlos syndrome (EDS).

I had a relatively healthy and normal childhood, I thought. However, I had an awful lot of emergency room visits for dislocated elbow, fainting episodes, injuries requiring stitches, broken bones, head injuries, etc. I also had frequent stomach aches since I can remember, and chronic nausea starting early teens. Chronic fatigue also started early teens. I learned to live with it. After various work-ups, I ended up having surgery to remove nasal polyps when I was 14 years old. That was supposed to help with sinus issues, and hopefully fatigue as well, if fatigue was related to decreased ability to breathe freely through my nose. It didn't help with fatigue. It didn't fully resolve sinus issues and I was informed polyps were back again ten years later. I chose to avoid surgery.

Fast forward a few years, and I injured my Achilles tendon just reaching to wash off the top of something. It would not heal. I limped off and on for years, confused as to why it would not heal, but no idea what to do.

Another several years later and a car accident (I was rear ended, it totaled the car), introduced me to constant, never-ending neck and back pain. I could not figure out why my body would not heal. I could not figure out why the pain would not go away.

It took another 15 years, more surgeries, tons of testing, lots of work-up by numerous specialists, to finally be diagnosed with EDS. That is the very brief summary, presented as dramatic understatement. There was so much discouragement, frustration, even despair at times during those years. Multiple misdiagnoses. I was incorrectly diagnosed with fibromyalgia (this was later ruled out by a different physician). I was tested for myasthenia gravis, glycogen storage diseases, mitochondrial disease, multiple sclerosis, etc. I lived many years with no diagnosis, but with my medical team knowing there was something underlying the numerous symptoms.

How is EDS typically diagnosed? It is often suspected by physical therapist, orthopedist, possibly primary care physician. Referral is made to a geneticist. Based on clinical signs and symptoms, the type of EDS is determined, then confirmed with genetic testing for most types. The most common type of Ehlers-Danlos syndrome, the hypermobile type, does not have the gene(s) identified yet. Thus, there is no genetic test for it. Classical EDS is second most common, vascular EDS is third most common, but is rare, more serious.

How is EDS treated? This varies dramatically. For some people with EDS, a rheumatologist manages things. For others, their primary care physician is the one who manages things. What are the treatments? Essentially trial and error. Physical therapy to help strengthen to support the joints is important. There is no cure. There is no specific treatment plan that works for all.

How did I come to be diagnosed? My orthopedic surgeon for my hips suspected I had EDS, recommended I be evaluated. I knew he was familiar with EDS, trusted him, so followed through on this recommendation even though I was convinced I was not hypermobile, could not have EDS. I saw a rheumatologist who said I was not hypermobile, not worth referring to genetics, dismissed concerns. However, she had told me she was not familiar with EDS. I knew my hip surgeon was. My physical therapist encouraged me to keep pushing for answers as she knew there was something. I ended up seeing a family medicine physician who was familiar with EDS. It turns out she has EDS herself. She easily found my numerous characteristics, determined that although it is subtle, I do have hypermobility. She diagnosed me with classical EDS. This was 2017, shortly before the new diagnostic criteria were released. Thus, at the time, genetic testing for classical EDS was considered 50% accurate, I was told it was not worth the expense. When the criteria changed, it was stated genetic testing for classical EDS was then 80-90% accurate, was recommended to be done. However, a negative test did not rule out a clinical diagnosis. Since in my case we needed to know what we were dealing with to better inform surgery decisions, genetic testing was never pursued.

We are pretty sure my orthopedic surgeries are a result of the EDS. Both hips have had surgery, both shoulders have issues. These are a mix of laxity, instability, with structural abnormalities.

Over a year after diagnosis, I am still grateful to finally know what was causing so many different issues. I am still learning how to manage all of it. Using compression clothes, kinesiology tape, gentle bracing to help support joints. Working on strengthening in physical therapy. Managing mast cell activation syndrome (MCAS) with antihistamines, mast cell stabilizers. MCAS seems to be driver of flares in most instances with me.

Resources
March 2017 special edition of The American Journal of Medical Genetics devoted to EDS
2017 classifications of EDS types
March 2017 Classical EDS
MCAS & EDS