The Courage of Illness By Lace Bentley

Can I be healthy, yet?

Not sure what set it off, but today is hard. Physically I'm fine. I've recovered from 7 punctures in 5 days, thanks to last week and a couple of unplanned tests on top of scheduled ones. I moved the lumbar myself, so I could pretend none of this was happening this week and just enjoy graduation celebrations for our son. My psyche had other ideas. Maybe it's just the medical stress from last week relaxing and the mental junk hitting. Either way, I'm exhausted from crying so much.

These were not pretty tears, but I'm not sorry. Sometimes, we just have to let they ugly, scary, and devastating be expressed, so we can find joy on the other side. And I do get to feel a lot of joy. Just not right this second.

I want to talk about "those" tears, "those" sobs, "those" dry heaves. Anyone else get them? You know the ones. They make everything in you scream and turn to intensity. These are messy tears, full of pain, remorse, regret, loss, trauma, fear, anger, so many things. I hate them, and I am so grateful for them.

I hate the two days of headaches afterwards, and barely being able to stand for a few minutes once the heaving stops. At least I don't pass out now like I did when I was little. I've learned to stop and calm down enough to maintain myself, even slogging to the kitchen for water, then back for another round of healing. That's why I love these tears. I hate the pain, the muscle cramps and spasms from the sheer intensity of it all. I hate the depth, but I love the healing that comes after cleaning out one of these wounds.

The healing is so very real. It is such a relief afterwards, like the echo-less sobs and throat burning dry heaves were actually banishing some firey hell-hound, long cloaked in self-destructive patterns. Then, as if it never existed, the pain ebbs, leaving me exhausted and glassed over until my oxygen levels re-stabilize. Then comes the clarity. Wow, the clarity.

At the end of these episodes my bio-mom used to call fits, I find myself. This Me is taller, braver, smarter, stronger, and more real. I can see Her armor, forged to brilliant golden-white through trial and suffering, pain and refining. It is blinding, but I cannot take my eyes off Her. She is beautiful in every sense of the word. This beauty is born of compassion, courage, and hope. The radiance is a deep, passionate love for every being who has ever lived, and a forgiveness for heinous crimes that are not Ours to judge. I step into Her, and feel God wrap Me in warmth, comfort, serenity and wisdom. His Wisdom. And I know this is all for a reason, much bigger than me. I don't understand, yet know beyond my own reality that it is the Truth.

My strength returns, and I pick up the brilliant sword, shield, and light that was always there. Then I move into whatever comes next.

Lace

Never Surrender. by Lace Bentley

Modern medicine is cool. They can look at our brain activity with ease, measure crazy things I didn't even know existed, and fix so much damage. Well, unless you have EDS. If you have EDS, the damage quickly becomes not worth the risk, the pain becoming part of the ever shifting "norm." Even more frustrating is how little they know about what is happening to us, and how often "I don't know how to interpret these results" is handed to the patient with an "everything looks normal" and a closing of the notes. It's overwhelming. And having 28 EKG and EEG leads on my scalp and chest itches. They have been transmitting for almost 3 days, a tech is coming to remove them in 15 hours. I'll have tons of sores that will take weeks (or months...) to heal, but was it worth it? Will anyone be able to tell me why I keep falling, why I'm so weak, or why I have symptoms of 3 types of seizures?

Can they tell me why my smile is fading, and the right side of my body is losing functioning? Maybe. Chances are, everything will come back "normal" and I still won't know how to help myself. That's not because things are normal, but because they won't know what it means, and no doctor yet has admitted they see things they can't explain. Instead, they tell me I'm fine. It's infuriating and stressful. But hey, I'm making this head wrap look danged good!

On another note, I'm sure sad tonight. It has taken me most of my life to feel pretty. That's not because I'm not, it's because I haven't felt attractive. And now that I do, I'm losing it to an inexplicable facial paralysis. It is devastating. There is no hope it will repair itself, and I'm not confident anyone will help me, let alone know what is happening. Instead, I cry in my husband's arms, asking him again if he's sure he can love me if I lose my smile. He says yes. I'm still scared. Then I take pictures with a friend who makes me smile extra big, and compensate a little so you can't tell. We intentionally went "yin-and-yang" for a photo. She won't wear white, which is cool, because I don't look awesome in black. The hat though... It's going to become a thing as I need to avoid bright lights and further eye damage. It's going to be adorable with my new light blocking glasses. Eat your heart out macular degeneration!

Some days I will be a warrior, and some days I will spend crying and overwhelmed with all the testing and resulting sores, skin damage and pain.

And everyday I will find joy, sunshine, peace and faith. This may take my ability to run, ice skate and dance, but it won't take my hope. It may take my smile, but it won't take my light.

I refuse to stop smiling, whatever that looks like. And I think it might be just a little sexy on the bad days... WORK IT!

I might not be in control of what my body loses, but I am in charge of how I love and live inside of it. This is my decision, even if not my choice.


So I won't give up. I'll keep fighting. That's not a choice that can be taken, and this girl? She doesn't surrender.

Love and Hope,
-Lace

Results from the surgeon by Lacy Chambers

So I made it to the surgeon for my appointment about my aneurysm. While there I found out I actually have 2 aneurysms. One in my brain and one just outside my brain on the same artery adjacent to each other.  The surgeon said that if the aneurysms aren't active then having them is less risky than the surgery but if they are active then the risk of having them is higher than the surgery. So I have to wait 6 months, get re-scanned and then we will know. During that 6 months though I don't know if it's active or not and how high my risk of rupture is. I asked if these could be the cause of my numbness and weakness and left eye dilation. He looked at my neck and found an arterial dissection  (a tear on the arterial wall). Those are very dangerous and knowing that I had one means that a dissecton is most likely the cause of my mystery symptoms. I have since had a test that confirmed that that dissection has healed. But how many have I had? Will I get more and when? This is so scary because having one can easily cause stroke at any point by part of the dissection sluffing off and going to my brain. I could also have an aneurysm burst at any time causing a different type of stroke. I am waiting to get tested for Vascular EDS but my insurance has denied the testing and it is very expensive so my Dr is trying to figure out our next move. Try not to stress my surgeon says, it can make aneurysms worse. Good luck with that. I am trying but it sure isn't easy. Thanks for all of your support and love. What doesn't kill us makes us stronger...or so they say.

Aneurysm by Lacy Chambers

We are still on the hunt for a sure diagnosis for what is causing my numbness and weakness episodes. There are many "theories" of what could be causing it but no test to confirm for sure on some of them or the test that would show doesn't show positive results to conclude that is the cause. One Dr thinks it's because of all the trauma to my body that occurred when my second kidney stone blew a hole in my kidney causing urine to leak into my abdomen for several weeks. Another thinks that something happened in my brain to cause the numbness and something totally different is causing the weakness episodes but she isn't sure exactly what. Nothing showed up in my initial brain scan but that can happen and the damage can show up later. But she doesn't want to re-scan unless I get more severe symptoms to cause the need for another scan so we aren't for sure about that as of right now. Another Dr thinks it is caused by the MCAS I was recently diagnosed with. Another Dr thinks it is caused by my EDS. And it could also have been an arterial dissection that caused it that has healed by now so the test they did to confirm was inconclusive.
When I got the test to see if I had any arterial dissections, they did find something else troubling though. I found out 2 weeks ago that I have an aneurysm in my left corotid artery right under the base of my skull next to my brain. There is also another possible aneurysm but when I go to the surgeon I am hoping to receive an answer as to exactly what it is. I go to the Vascular Surgeon in 2 days. I am anxious to find out if and when they will do surgery and what this means for the rest of my life. Aneurysm's are common in EDS and this finding is causing more concern that I have Vascular EDS which is the most severe form of EDS. There is much to take in lately with all of my new diagnosis I have received. And still a lot of unknowns. I hope I receive answers some day soon. The hardest part is that nothing they have diagnosed me with has a cure. I have to live with it all the rest of my life. Some of the them have treatments that lessen the symptoms but there is no way to make it go completely away. They may be able to fix my aneurysm, but I could always get another one at anytime.
It is strange knowing that almost every time you go to the Dr you will be diagnosed with something new, something they can't do anything about, and something that is severe. I never understood how serious EDS was until recently. It has been nice having an online group of fellow EDSers to talk to, get together with and gain resources from. It has helped knowing there are others going through a similar fight. I am truly grateful for all the support and love I have received from family and dear friends throughout my journey. People are amazing.

Guilt by Lacy Chambers

Living with a chronic illness creates A LOT of guilt. Whenever I am having a bad day and rest and don't do anything around the house I lay there feeling so guilty about not helping out but I know I physically can't. I look around at my house noticing things that need to be done, but don't have the energy and am in too much pain to do anything about it. I wish that I was "normal" and could do things anytime I wanted.
I also feel guilty when I don't feel up to going out and doing things. Sometimes I cancel and feel horrible, other times I just go and feel horrible, but those are two different types of horrible. I hate committing to things, and then having to back out and not do it because I can't walk or because of something else that is going on. I always feel bad that I mostly just sit back and watch the world going on around me and can't participate. Watching the fun is great, don't get me wrong, but being able to be in the fun is so different.
I have guilt about my kids having EDS because I passed it on to them. Now that my health is so rapidly getting worse I worry about their future and what EDS means for them. When I was a teen they tested me to see if I had genetic markers for Vascular EDS, but it came back negative so I was diagnosed with Hypermobile EDS. My Dr. at the time wanted me to be tested before I thought about marriage or having kids. It was such a relief to know I didn't have that kind. Now because we know more about me medically my Geneticist thinks that I have Vascular EDS even though my previous test was negative. Now they have more genetic markers to look for and better testing for diagnosis than they did when I got my testing so they want me to be re-tested. The life expectancy for someone with Vascular type is only 45 years. I am now 32, what daunting news. And again, what does this mean for my kids? If I have it, they do to. I can't say that I wish I never had my kids, they are 2 of the most amazing people I know. And maybe, just maybe people would be born how they are born no matter what. So in that case, my kids had to be born and come to Earth, and if my theory is true they would have still been born with EDS but possibly to parents who know nothing about EDS. Since I live it, I am better equipped to empathize with them and help them through their life challenges along the way. If I had known I had Vascular type when I was a teen would I have adopted, never had children, or still had my children? There is no way to know but what I do know is that I am so grateful that they are here and that they are mine. That however doesn't take away the guilt when they are in pain or get injured because of the disease they got from me. There is a 50% chance of passing it on, and both of my kids got it. That is not the greatest odds.
I feel such guilt having such severe health problems all the time. If I was healthy we would have so much more money because we wouldn't be spending all of it on medical bills. My husband works so hard for our family and I am so grateful everyday that he can go to work and that he does such a great job supporting us.
One thing we have learned recently is to cherish every second we have together because we don't know how long I will be here for and what my health condition will be like. What a blessing it is to live like this, you don't want to wast a moment on anything that isn't worth it. My relationships have gotten so much stronger. Life is a process, there is no way around the guilt but there is a way to still feel joy.

Coming Home by Lacy Chambers

I came home from the hospital using a walker. My kids hadn't seen me walk yet, everytime they visited in the hospital I was in bed. When they saw me walk for the first time how I was walking they both looked terrified. It was so hard for me knowing I was scaring them with my new reality. We talked about it and they worked on accepting what was going on. I wasn't walking without assistance for another week after coming home. Then I was slowly, cautiously walking staying near things I could walk along, walls, furniture, holding someone's arm. I was still having numbness on my left side but my walking was improving drastically. I was thrilled. Then less than a week later I had a relapse of my weakness symptoms and couldn't walk normally again, this time for over 2 weeks. I have since had 4 more relapses of my weakness episodes and am still to this day numb on part of my left side and where I'm not numb I have major sensation issues. The Dr's have no idea if I will ever re-gain normal feeling on that side. I have had to change my wardrobe. Because of my numbness and sensation issues I can only wear certain fabrics and styles of clothing or it causes severe irritation. I am also very sensitive to temperature on that side. Getting adjusted to my new body has been difficult but it has also brought so many blessings. Since I never know when I wake up in the morning if I will be walking by the end of the day or not and then how long I won't be able to walk for, it has made me grateful for every moment I have. I have learned to more fully enjoy and appreciate those around me and the simple things in life that I can do. I have been able to allow people to serve me more, and has made me so much more grateful for the tender moments my body allows me to serve. I have learned to let go and not be so OCD all the time about things. I used to make sure everything in my kitchen was put away a certain way and if someone else helped out and put things away I would spend time "fixing" it. Now I let people put things how they want and leave them. I am actually putting things away not as "perfect and in order" as before. It has given me more time to rest and appreciate things going on around me. Who has time to spend worrying about if the plates were put away properly? I have also learned that it is ok to have frozen meals for extended periods of time or to fix whatever is simple. I used to feel like if I didn't have a homemade meal every night that was balanced and nutritious that I was failing at being a wife and mother. But the truth that I have learned is that the important part is being together as a family enjoying whatever is put in front of you. And if I take the easy route because I have to that day, it's ok. Everyone will live.

What Terror Feels Like by Lacy Chambers

It is bizzare to wake up one day and have yourself slowly deteriorate throughout the day until half your body goes numb and you have no strengeth. On August 29th, 2016 I woke expecting it to be like any other day. I started not feeling very well shortly after I got up. My skin hurt and I just felt off. As the day progressed I got worse, I didn't eat lunch because I didn't feel up to eating. I laid around all day thinking I was getting sick. My arms felt weak and it was hard to get my arms and hands to do anything. Shortly before my kids got home from school I got up to take my dog out to the bathroom. When I tried to walk my right leg buckled and collapsed under me with every step. I started passing out and had to lean on the railing until I totally regained consuousness. Then when I tried to put my dogs leash on I couldn't stop myself after bending over and my head went straight to the ground, I had a hard time righting myself again. When I went outside to walk my dog I couldn't walk straight, I was going all over the place and my right leg still wasn't working well. I was so scared, what was happening to me? I came back inside and laid down without getting up until my husband came home and finished making dinner because I couldn't. He came to help me to the table since I knew I couldn't walk well. My walking was worse than before. Neither of my legs seemed to do what I wanted them to. Once I got to the table and sat down I face-planted on the table because I couldn't hold myself up. Trying to eat dinner brought me to tears. My arms weren't working well and I couldn't reach for my class, my husband had to put it right by my face with a straw. I couldn't cut my own food so my husband had to do that too. Trying to get the food into my mouth was a joke, we had french toast and I had syrup dripping down my chin because I couldn't get it into my mouth easily. I ate dinner that night devastated with syrup and tears running down my face. I was losing control of my body and had no idea what was going on. It is such a surreal feeling. After dinner I was helped back to the couch to lay down. An hour after dinner I put my hand on my leg and realized it was numb. Within another hour my whole left side was numb. Then you get really scared, am I having a stroke? Will I ever feel back to the way I was again? Can they fix this? I went to the hospital and they started running tests right away. Why can't I walk? Why am I numb? Why do I feel so weak? An MRI showed nothing, no stroke that they could see. Blood work was fine. So I was transferred hospitals and admitted. I was there for a "rule out stroke" on the cardiology floor. Throughout the next 3 days I would endure so much testing, a spinal tap, blood work for everything they could think of. Everything came back normal. No answers. Still numb, still can't walk on my own. Sent home with so many questions.