The morning of travel I was exhausted and my bp was being pretty touchy but I was able to get to the airport. Brain fog had me nearly to the wrong airport before I realized I was going to the wrong one and had to turn around and go the other direction. Luckily they aren't too too far from each other and I was able to get there in the time I had left without issue. I try to always leave extra early in case of long lines, traffic, needing to stop for meds (or sit a spell), or etc. so that the stress doesn't make me more symptomatic. Having that extra time was very useful this trip. My luggage ended up getting checked 1 minute after the cut off time. 1 minute and my luggage wasn't guaranteed on the plane anymore. It was beyond frustrating since I knew that, even with the detour, I would have had no issue getting my baggage checked in on time if I didn't have dysautonomia. Luckily it did get on the plane in time so there were no issues. I made sure to wear compression stockings and added extra powdered electrolyte drink packets to my carry-on as I would be drinking them non-stop for the rest of the day. This trip I had to use a wheelchair in the airport. I don't normally need to when I am not flaring or when it is a milder flare but there was no way I could stand in the TSA line, walk through a large airport, and stand in line again to board the plane just to endure the pressure and altitude changes then walk/stand more at my layover and destination airports. It just wasn't going to happen without serious repercussions. I hate using the wheelchairs even after all this time as I always assume people think I am faking a need for one... pretty much the same as when I had a handicap parking pass and let it lapse because I hated the stares. I only use help when I absolutely need it so I need to get past that... but it is a common sentiment I hear from others like me so I am far from alone on this. On the wheelchair front I will say that having a carry on AND the pet bag was rather more difficult than I imagined it would be even though they escorted me to the gate as not all airports/airlines will let you put a backpack on the back of the wheelchair I found out.
TSA was no issue whatsoever. I walked, shakily by that point, through the detector then had my hands tested and we were done. They didn't care about any of the food items I had chosen to bring with me and my laptop and liquids bag were easily accessible so we were done within a few minutes. As soon as the pups and I were through they brought the wheelchair through to the other side of security and I gathered my belongings quickly and we were back on our way. My heart rate from that small standing/walking bit was quite high so I was grateful for the wheelchair and didn't even care about the stares at that point... I needed the help and I was glad I had it. Next time I hope I won't need it but if I do then I will make the request just as I did this time. Never judge someone if they use a service such as a wheelchair, handicap bathroom stall or parking placard, etc... you never know what is going on medically with them just by looking at them from the outside. No idea whatsoever.
The dogs know how to travel as they have been doing so for years so they were pretty much perfect the whole time in the airports and on the planes. There was one little tiff where one ended up falling on top of the other (my fault) and the landed upon pup got upset but we were cool within a minute or less. My neighbors on the plane didn't even know I had them with me. One was totally surprised when I let her know that I would let her out and then wait until the plane cleared a bit before leaving as I had the dogs so needed a bit of time and space to maneuver. She asked me if I had to drug them... I let her know that "No, they are seasoned travelers and are likely napping at the moment but will wake up when we land." and she asked a few more questions about cost, their carrier, and about them in general and then it was time to de-board. Once we arrived at my grandmother's house the pups had everything they could want in the world: plenty of people to love on them 24/7, food, toys, a big backyard that they could go out and play in whenever they wanted. They were quite happy to be there.
As for me, well my trip wasn't quite the success it was for the pups. My flare kept getting worse until I was practically hooked to a bottle of Gatorade and a bp monitor 24/7. I couldn't stand for more than a few minutes without issue so I spent most of the trip lounging on a couch brain fogged and symptomatic trying to keep everything in check enough to still interact with my family who was visiting. I *think* I did a pretty good job of pretending to be 'normal' when needed but for the most part I probably just looked pretty lazy and out of it unfortunately. I'm still glad that I went of course but it was sucky not being able to really be up and about and really interacting fully with my family since nearly everyone was there- including my 19 month old niece, most of my aunts and uncles, my sister, brother-in-law, parents, a cousin and both sets of grandparents. I saw a really cute play with my grandparents the last night I was there and it wiped me out but I'm glad I got to spend that time with them nevertheless and didn't just stay home.
Headed back to TX was pretty much the same issues and process... wheelchairs, Gatorade, compression stockings, nausea meds, and sleeping/resting as much as possible. I wasn't quite as symptomatic by that day as I had been earlier in the trip and might have been able to walk the airport on my own but I had parked in long term parking (I know, bad choice... I didn't realize how far it was from the entrance when I parked there. My body hated me by the time I got to the ticket counter on the way to KY. BP was crazy and I was so tachy the room was spinning and I was sick, no bueno.) and I knew I was flying into a storm so I didn't risk it. Worsening my flare was the absolute last thing on my to-do list for that day. It took a few more days for the flare to finish calming down but I am back to my 'normal' more or less now it seems thankfully.
I wanted to write this post as I was preparing to travel and give you a day by day breakdown... but then life happened. I ended up having a flare two days before traveling. Not good, not good at all. So I will write out what I usually do as well as what I ended up needing to do this time around due to dealing with the flare. The unpredictability of flares is exactly why I over plan my life the way I do and why I pack such an intense backpack. Being prepared gets me back on track so much faster and back to enjoying my life. A few minutes of preparation each week can mean an entire week back for me... so worth it!
What I Usually Do
These days if I am traveling last minute then I won't be taking the pups more than likely (unless it is an emergency) so there is less to pack and less to manage. This makes life a little bit easier. Since I already keep my hygiene kit (and most of my carry-on) packed I can pack from start to finish in less than an hour, in a pinch. I don't like to do this as it can cause extra stress which can make me more symptomatic. Plus, the rushing around will make it a lot more likely that I forget something. For just a weekend away though it isn't usually an issue.
For the dogs: I just grab the dogs' diaper bag, which stays packed, so that I can drop them at my mom's. Their diaper bag has everything that I usually put in my carry on pet bag as well as almost everything from my suitcase pet list. All that needs to be done is toss in the leashes, a few toys, Isabel's ball, fold down the pet pen and double check that I refilled the food container and they are ready to go. This takes about 5-6 minutes typically which is much faster and less stressful that having to pack from scratch! When I get back from a trip I put away the few things that don't stay in the bag and refill anything that was used so that we're ready to go again the next time.
My bag: I put my hygiene kit, the medicine containers for the days I will be gone (each day's organizer pops out for easy carrying in my purse or carry-on... it's pretty awesome), a pair of PJs and a set of clothing (including accessories, shoes and a handbag) in a dufflebag and I'm pretty much ready to go on this front.
All that's left is my carry on/backpack. For that I need about 10 minutes as I have to move any liquids to the liquids and gels bag I keep in my closet (if I'm flying, (usually last minute trips without the pups aren't air travel), add my passport and tickets/itinerary to the front pocket and put my laptop in the holder. I might add a set of clothes to my bag as well if I am flying, but like I said, last minute travel for me is rarely flying. Everything else is already in my backpack more or less all the time. If I want to add my travel blanket and pillow that is a quick fix as they are stored away for easy access in my car. You'd be surprised how often a blanket comes in handy in your car...
Most of my travel isn't done last minutes though, I prefer to plan out travel so that I can enjoy my time off as much as possible. For normal, planned trips here's my routine:
I will begin to pack a few days ahead of time, if I can. For me this means doing an extra load of laundry, getting some extra chores done each day so that I have a clean house when I leave/come back and pulling out my packing list. Since I keep my hygiene kit pretty much packed it takes only a few minutes to run through it all and make sure that I don't need to refill any of my bottles and jars in the bag as well as make sure I have my meds ready to go for the trip. Doing this a few days before will allow me time to stop off and pick anything up that I may need on my lunch break at work or on the way home which reduces stress.
The dog's 'suitcase' items and my hygiene kit are the first to go into my suitcase as I won't need any of the items in them for the next few days. Other items I am unlikely to need get added at this time as well. Most of the time I try to get this portion of the packing completed on the weekend if it works with my schedule so there is less to do during the week. Clothing I add to the suitcase as the items I need get laundered. Once I have added all of an item (such as shirts) on my list to my suitcase it gets checked off.
The night before we travel I make sure to give the dog's I-Go-2 a wipe down and add in their leashes. I also run down my list of chores to make sure that everything is clean and nothing will be smelly and gross when I come home. This means doing the dishes, cleaning out the fridge, taking out the trash, and running a last minute load of laundry with linens and any random clothing that I need when I return. Hopefully the rest of the chores for the time I am gone will have been handled already. I will then put my suitcase and the girl's carrier in the car. Mornings are not my strong suit. I am kind of grumpy, definitely forgetful and symptomatically worse in the morning. For this reason I try to prepare for the next morning the evening before even when I am not traveling.
My carry on is the last thing to be packed. This is pretty much exactly like when I am traveling last minute except I pack the dog's carry-on bag, the travel blanket and pillow as well as the clothes that go in my carry-on bag (should I be flying) all at once. Isabel's ball and my empty water bottle are pretty much the only things that gets packed (other than potentially putting food in my bag) the morning of travel.
A few days before I travel I push water pretty heavily and make sure to eat more sodium than my usual. This helps bump up my blood volume as well as blood pressure as my bp can drop more than normal during air travel. I also lay off any caffeine that I may have been taking in previously. Sleep is pretty important all the time but when I am about to travel I make sure to be very rested for a few days to not add on to the fatigue travel will cause. Being tired, stressed and dehydrated is about the worse combination for me when stepping into an airport as all the standing, walking, pressure changes, and the air quality of the plane itself will just add insult to injury and likely trigger a flare.
What I Did Due To The Flare
I ended up needing to head in for an IV infusion a few days prior to travel this time around as my bp and heart rate were suggesting I might be dehydrated and was definitely flaring. The IV wasn't enough to stop the decline in my health though. I ended up continuing to salt load with electrolyte drink powders and bottle upon bottle of water for the rest of the week, barely keeping my symptoms in check enough to travel. Luckily, I had already packed quite a bit before this flare hit so it was just a matter of trying to get in a few extra chores every day... not going to lie though, I ended up sleeping in a linen-less bed the last night as I was simply too exhausted to wait for the linens to be done and was in too much pain to sleep on the couch. Such is life, I will just have to put the linens (which are still in the dryer) on the bed when I get home. Other than that, every chore that 'had to' get done was completed. The extras that I would normally do to make the coming week easier didn't get done of course but that's ok.
Getting everything done came at a cost though. When I am having a flare sleep isn't always easy. I have intermittent insomnia even when I am not having a flare but when you add in a flare it gets pretty bad. I can be lucky to get a few hours a night since I have to get up for work. This usually only makes the flare worse as I am not getting the rest my body desperately needs. If possible I will take a day completely off of work to get in some of the much needed rest. Either way, during a flare I'm exhausted and once I'm asleep I can sleep for 10-12+ hours easily, but getting to sleep... that can be difficult. The pain, nausea and heart issues make it difficult to fall asleep. So... I ended up getting on a plane exhausted and dehydrated despite my best efforts.
I'm a huge list person... it's pretty much how I keep from forgetting half my life. Brain fog is a symptom of several of the issues that I have so being forgetful is pretty common, as is confusion from time to time.
Here is a post from my personal Facebook page that shows a bit of the confusion side:
"So I just wondered where the rain was coming from and how it was raining in just one small area of the parking lot... When I passed through about a second later I was like, sprinkler... It's a sprinkler Heather. Hello brain fog! Still not as bad as last week's trying to punch the office number into the floor buttons on the elevator. I was so confused when I got to the zero... At least those are funny incidents :) the worst is having to be so organized... all... the... time... so that I don't forget something. If I ever tell you I'll remember, call me a liar and wait 'till its in my calendar/lists. Till then its a nebulous maybe even with the best of intentions."
I organize my life currently with an App/Website called Cozi. I keep a To-Do list called "Vacation Packing List" and one called "Weekend Away Packing List" so that when it is time to pack I don't have to come up with a new list and forget something important. The only big difference between the two lists is how they are arranged as for a weekend away I need to pack dog food and pack everything for the pups separately as they will likely stay with my mom for the two days. When I travel on vacation, if it is more than a couple of days, I will need to buy food once I arrive and their items will be in my bags since they will be traveling with me. Clothing for all seasons are on the lists so I look through it before I start packing and check off things that I know I will not need. There is also a note for me to check my itinerary and the weather before finalizing my packing. You will also see items listed for my hair that I do not need any longer since my hair is quite short at the moment but I am leaving them there as it reminds me to check and see if there is anything in that drawer (my hair items drawer) that I should take for a specific outfit. I am sharing the lists below in case anyone else would like to utilize them... feel free to let me know if I've missed anything! When I am away if I find that I needed to pack something and forgot it I just pull up the app and add it right then and there so that I don't forget it the next time. This list is for when I am driving for the most part but for most people could be used for flying as well. I am working on a better organized version for flying to show how I separate between my carry-on and checked luggage. The difference you will see is mostly just in how it is organized but there are a few odds and ends I need only when I fly as well as a few duplicates that need to be in both my carry-on and checked bags just in case. Sooo... here's my current list!
VACATION PACKING LIST:
I am going to visit my family in Kentucky soon! I'll get to spend time with my cousins, aunts (except one, who lives in California), uncles, grandparents, sister, niece, parents... pretty much the entire family. It's pretty exciting. Buuuuuut, traveling can be difficult with a chronic illness as you know. So I'm going to show you how I pack to be prepared for anything that might come up during travel, and while I am away from home. For both myself and the wonder pups that will be showing up in the photos (they thought we were leaving because they know the drill for when it's time to get gone... which means that they didn't want to be left behind and were pretty much underfoot most of the night I was taking the photos for this and a few other of the posts in this series). I will have a post on how I pack the pups, how I pack my carry on, my go-to packing lists, and what I do the week of my trip to prepare my body for the stress of travel. I will end the series with a post on anything that comes up during the trip to KY.
Let's start with how I pack the dogs...
Aren't they adorable? How could I leave them behind!?! I couldn't is the answer. They are well seasoned travelers at this point and actually love traveling most of the time (grandmas and great-grandmas spoil them rotten so why wouldn't they love visiting?). Those who ask why not kennel them and travel lighter... have you seen kennel fees? With my girls being so small we can travel for cheaper usually and I never have issues with them at airports. People often don't even realize I have them until they look closely or one of them moves and it catches their eye. Also, I don't like leaving them with people I don't know or exposing them potentially to kennel cough or other nasty bugs unnecessarily. I do their grooming at home typically as well to save money, reduce the stress on them and keep them healthy.
When the girls and I travel we always attach a medical ID card to their carrier as well as my carry-on, just in case. I sometimes have their ID cards attached as well but typically I carry those in my wallet (I am STILL waiting on ones with updated addresses... come on HomeAgain, get your act together). I prefer to have their collars outside the bag so that I can prove their shots quickly if asked without having to take the girls out of the kennel in the middle of the airport (airport people don't like it when you do that). Plus they are a little heavier than I would like on my small pups since where I am currently living has A LOT of required tags. For this reason when I am home and they are just relaxing I often remove the collars. We are on the second floor right now so they won't get out and be lost and even if they did they are both micro-chipped with HomeAgain per our last duty station's regulations so it will be easy to identify that they are mine and contact me if something were to happen. I will go into what they need in my carry-on bag in bit. Just as an FYI, you will have to take them out when you go through TSA as well as have your hands wiped for explosive residue (or whatever that test is... that's what they said it was for last time) which takes a few more minutes so budget your time for that.
Now, before anyone complains that the kennel/bag is too small for my babies let me just say this: I wish I could take two kennels/bags so my babies could stretch out and enjoy the flight but the airline won't let me (and it is quite expensive as well). Now that I am single I am only allowed to pay for one carry-on pet kennel allowance since I only have one seat to place it under. They sleep the entire time once we are settled on the plane, I do not make them stay in it one second longer than absolutely mandated (so we get on the leads as soon as we leave the airport doors), and it is a lot roomier than it looks due to the sides expanding and they travel in it with the part you are looking at facing the ceiling so they get the entire 'height' as the length instead... plus my babies are both pretty small and they can (and do) turn around in the carrier. They just can't do a whole lot of moving about during the trip, which I hate but I can't move a lot in the airplane seat either and its better that they spend a few hours sleeping in close quarters than days in a kennel upset and not eating. Isabel doesn't eat we when I'm not around I found out when I went for a visit with a friend and left her with my mom, who she loves and knows well. All that being said- if you can take one kennel per dog that is, without a doubt, ideal and the best practice to stick with. A lot of airlines have made this the rule anyways so please check and ensure that if you are traveling within the guidelines for your airline. Further, if you have a layover and there is a pet relief area please, please let them out to stretch if at all possible. Just like we like to stretch after sitting for so long they need to as well. They also need to be able to relieve themselves and be comforted by seeing you again after being locked away beneath the seat for the duration of the flight. Traveling with a pet is not easy and making sure to bring them the best comfort you can is very important to their well-being. My Roxy LOVES her bag and tried to jump in it as soon as she saw it when I took the picture above actually (I had to hold her so that I could get a good picture and not hyper puppy blur) and will often go lie down inside it if I forget to put it back in the SUV after cleaning it just like with her pup-tent (collapsible pen). She has traveled with her sister inside it before without issue BUT not all dogs/pets will be able to do so. Now that that has been said... back to packing...
First off, their leads/leashes... super important. I never pack them in the check-luggage as it has gotten lost before and then you end up needing to go purchase new ones until the ones you packed are delivered back to you (hopefully). You will also need the leads in any pet relief area and once you arrive at the airport when you let them out of the carrier so bringing a set is imperative. Wasted money I could be spending on having fun on my vacation in my opinion. In the side pockets of their I-Go-2 Plus I have each of the leads... one side has the lead with the attached canvas bowl and plastic waste bags and the other side has the lead with the harness for my super excited pup. These stay on the leads full time for the walks we have been trying to get in lately so that I don't have to worry about getting it on and off every time we leave the house.
I always make sure they have water available. Roxy is an excited pant-er so she needs water often when we travel (or when I get home, or when we go to Grandmas, or when we go to the dog park... you get the idea). Isabel takes a little more work to get to drink when we are out of the house but it is important that all three of us stay hydrated. I like the H2O4K9 bottle I have now the best out of all the bottles we have used over the years as it is stainless steel and has a drinking cup for them built right in that allows me to return any water that was not drunk to the bottle. Neither my own nor the dogs' water bottles are full when we go through TSA of course so one of the first stops on the other side is to get water for all of us.
Hi Roxy! She was insistent on being right there every second in case we were leaving so that she could come... she knows the packing drill. :)
In my carry-on they have their H2O4K9 and a small bag that has their medications (other than the Benadryl Roxy needs in Kentucky for allergies... which is in my 'liquids and gels' bag for TSA purposes) along with anything needed to administer them, several potty pads and extra waste bags, a lead coupler, their brush and toothbrush, thier medical records on a zip drive along with an abbreviates version in thier 'passports', a couple of toys including Isabel's orange ball (that we must not EVER lose for fear of the freak out session that would surely ensue... think baby's lost teddy bear at bedtime but 24/7), food for one day and a couple of treats just in case. In the photo I do not have the toys because the dogs are playing with them or treats because I forgot to grab them from the packing prep area I had assembled.
In my main suitcase we have their collapsible pen, a single and double Popware feeder (single for water and double for feeding... traveling with one dog would just need a double), some more potty pads and food for the trip. Since we are only going for a few days I am going to be trying to pack their Gamma2 TravelTainer so that I don't have to go buy food once I arrive as it will store enough food for them for 3-4 days. You could also use some gallon sized ziplock bags but I don't have any right now and I do have the TravelTainer. If I am able to fit it in my suitcase then I will leave behind the double Popware feeder as the TravelTainer has built in bowls I can feed the girls with (if you have one pet you don't need a water bowl either!). If you want reviews on any of the items I use with my pups let me know and I will write one... most of these items I have been using for YEARS and I love them all. I pulled the links from the purchases sections on my Amazon account (ran a search for 'pet' to see everything I had purchased for them over the years) so these are the exact models I have right now. As always, check around for better prices or alternatives if something doesn't quite fit what you are needing.
No... I did not purchase all of this at once. This has been over years of traveling frequently with my girls. They have a diaper bag I picked up at a yard sale for $5 that stayed packed in case we decided at a moment's notice to go out of town for the weekend... just grab the bag, fill the water bottle and fold down the pup-tent and away we went (my ex-husband and I already kept hygiene bags packed so it was just a matter of grabbing clothing and medication and we could be on our way). We used to road trip to my aunt's house about once a month when I was married and living in California and have gone cross country as well as on trips to visit family out of state with the girls. I've accumulated their travel kit over the nearly 5 years they have been alive. If it is your first trip with your pet you can easily purchase a small bag of pet food at your destination (I do if the trip is longer than 3 days for sure... I might this trip if I am not able to fit the TravelTainer in my suitcase!), use other bowls you borrow or purchase at your destination inexpensively and get a $1 canvas water bowl to give them water from your own water bottle during travel. The canvas water bowl I have attached to the girl's leads currently for walks I actually purchased at the Dollar Tree several years ago. The reason they have their own water bottle is because I will go through several bottles of water during the course of a 4-6 hour trip. At work, not in a dry environment, I drink about 1.5 L before lunch alone. It makes it easier for me to pack for them the way that I do so that I don't stress once I arrive or on the trip to get there any more than necessary. Being less stressed makes my illness easier to manage so I enjoy my trip more which is pretty much the point of a vacation. Oh and yes... I like pink. :) My favorite colors are actually pink and green, though not together.
I've had allergies and asthma since I was a kid that caused some issues but my chronic illness journey didn't really start until I was 12 years old. In October of that year I was hospitalized for a week when I needed an emergency appendectomy. I came in to the ER with a pain, a high fever and, unbeknownst to us, pneumonia and ended up in surgery fairly quickly to have my appendix removed. A fairly standard operation ended up keeping me in the hospital for a week as my fever shot up very high every evening as I healed from both the surgery and pneumonia. Everything seemed fairly normal after I left the hospital though, I was very tired and couldn't do a lot of exercise but that was to be expected. Over time when the fatigue didn't abate and I started getting more symptoms, such as high heart rate when I was standing, dizziness, vertigo, and nausea, we went to our family doctor trying to find answers. It didn't even occur to us that it was side effects from the surgery since it had been quite a long time by this point and I was healed. In truth the surgery and ensuing hospital stay wasn't the reason that I was sick but it was, most likely, the trigger that set everything else in motion. When you have dysautonomia it isn't a disease you catch but rather something you are predisposed to developing.
The journey to find answers to the mysterious illness that was slowly taking over my life took 6 years and included several cardiologists, a pulmonologists, a gastroenterologist, a sleep therapist, a couple of neurologists, an endocrinologists and even a psychiatrist when they thought that maybe depression was causing the insomnia and possibly more. The therapist sent me home with us both in agreement that I wasn't depressed. At points later I will admit though that depression did come into play in my life but it wasn't the cause of my illness(es).
Symptoms ranged from gastrointestinal issues like IBS to heart problems such as tachycardia and blood pressure spikes/dips and more but it seemed like no one had the answer to what the diagnosis should be. There were some wonderful doctors along the way who cared very much and did their best to treat the symptoms I was experiencing and then there were some doctors... we'll just leave it as they weren't so wonderful in their treatment of me. Eventually I was diagnosed with POTS, NCS, and NMH. All three are forms of dysautonomia which is a disregularization of the autonomic nervous system. Having a diagnosis didn't really change the treatment I was receiving very much though as, at the time, treatment was mostly symptom management which was what we were already doing. However, it opened the door to support groups around the world that were all dealing with the same issues as me. That was a blessing beyond measure.
Over the years my symptoms have had good spells and bad spells but I know so many others with the same conditions as myself who are in much more difficult situations medically. I am very grateful that I am able to work for instance- I can't work outdoors in the heat and I can't do a lot of physical labor type tasks but I can work in an office or a classroom. I am grateful that I am able to walk- not everyone with dysautonomia can stand for more than a few minutes, let alone walk far. My limit used to be 20 minutes for standing which made regular activities such as grocery shopping, going out with friends, and getting around an airport rather tricky to say the least. As I have found physical coping mechanisms, changed lifestyle habits, and perhaps just gotten better somehow, I have been able to reduce a lot of my symptoms and I can stand for much longer now.
Within the past few years a few new things have come my way on the medical front. A diagnosis of MTHFR, a genetic disorder that affects detoxification and menthylation within the body, was one that came on the heals of a scary time for my sister. She had some issues and the doctors discovered that MTHFR was the problem. Since it is genetic the whole family needed to be tested. I had to fight for a year to be tested as they told me there was no cause to test because there isn't a treatment and that it 'really doesn't cause any problems.' So far research has linked blood clots, aneurysms, miscarriage, depression, fatigue, migraines, certain mental disorders, anxiety, high blood pressure, and other issues to MTHFR- some of which I experience myself. This does not mean that MTHFR is the cause of these issues though, further research is needed to determine causation, as of now we only have a link or association. I have defects on the two main genes they test for when checking for MTHFR but I only have one copy of the mutation on each gene rather than two (this would be called compound heterozygous) so my symptoms aren't as pronounced as someone who would have both copies but worse than someone with no copies or a copy on just one gene.
The second issue that has come up is pain... All of the pain. Every morning I wake up and roll out of bed hearing a dozen snaps, crackles and pops in the joints of my body. They usually do not hurt much but if a joint subluxed, or partially dislocated, while I slept there is pain. The joints that are more common for me to sublux in my day-to-day activities are my hips and shoulders but my ankles roll regularly and my knees give way without warning as well. Recently my thumb has begun to start subluxing more often as well... that isn't particularly fun but it will eventually be just like when my hip or shoulder does- put it back and move on with my day. All the pops and cracks along my spine especially tend to mean pain and inflammation. Luckily I have a wonderful massage therapist who I see regularly to help with the knots and tension that inevitably occur from all of this. Without her I would likely be dependent on pain killers and anti-inflammatory meds which would be bad for the next issue I'll talk about. I'm still waiting to be seen by a geneticist but symptom wise (there are more but this post is getting really long so I'm skipping past them) I'm likely looking at a form of EDS.
The last issue that I've been dealing with lately is headaches. I pretty much live with what I now consider to be a low grade headache 75% of the time. Sometimes that low grade headache will go away (hurray!) but other times it turns into a migraine, higher intensity tension headache and even the occasional cluster headache. I am working with a neurologist to see if we can discover the cause but so far we have ruled out rebound headaches. I have an MRI later this week as well as an ophthalmologist appointment upcoming to check for some of the worst issues like swelling in certain areas of the brain, descending cerebellum and tumors. After the doc looks over the results I may be looking at a spinal tap as well (no fun...). I am hopeful that we can find the answer and if not fix it then at least find some ways to combat it.
That's a pretty quick overview of the last 15 years of my life from an illness perspective. There have been a lot of bad things but also a lot of good... I wouldn't be who I am today without having gone through everything that I have in my life. I like who I am so it makes the good list. Further, I have met some amazing people on this journey that I wouldn't have met otherwise. I've been able to help people that I may not have been able to otherwise. I also discovered Paleo/Primal/Real Foods Movement along my journey... it has changed my life for the better. My symptoms are so much better and it has opened new doors to my understanding of my body with researching the diet and lifestyle that surrounds many of its practitioners. Basically... it's not all bad, I'm used to a certain level of pain and live a fairly regimented life most days but it is who I am and I am ok with that.