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.

1st food challenge day by Lacy Chambers

After 2 weeks of being super restricted on my Low FODMAP Diet I get to start "challenging" foods it excludes to see what my tolerance level is for certain foods. I haven't been able to have anything with garlic or onion for the last 2 weeks, today I made a dinner with gluten free stuffing and it had small amounts of garlic and onion in it. I shouldn't technically be doing 2 new foods at once, but you gotta live a little right! I made homemade Cream of Chicken Soup so it would fit the diet. Mixed 1 cup of that with 1 cup Fat Free Sour Cream. Cooked some chicken with salt and pepper, chopped it and put it in the bottom of a 9x9 square pan. Then I sprinkled a little grated cheddar cheese on top and covered it with the soup mixture. I then cooked a box of gluten free stuffing and put that on top. Then I heated it all in the oven for 30 min at 350. I made rice and put the chicken mixture on top. Delish! Give it a try and let me know what you think.

Life with MCAS by Lacy Chambers

I was recently diagnosed with another secondary condition to my Ehlers Danlos Syndrome (EDS). It's called Mast Cell Activation Syndrome (MCAS). Basically my mast cells rip open and create a very high level of histamine in my body so I have allergic responses to about everything even though I'm not actually allergic to very many things. Normal hystamine levels are 7 or below, mine are 20. So I recently started a new diet to help with the symptoms it causes called the Low FODMAP Diet. It is not the most fun thing to do but if it helps me feel a bit better it's all worth it. I wanted to share some food ideas I have done so far that have been successful. My first recipe is a breakfast idea. I made an egg and spinach waffle with strawberries. To make the waffle just scramale 2 eggs with 1 cup fresh torn up spinach and salt and pepper, add to your waffle iron and cook until done. You can add a little shredded cheese to the top if you want. I also added cherry tomatoes cut in half. Then put a half cup of strawberries on the side. This is gluten and dairy free.