How do you feel about your current treatment plan?
Treatment plan? What treatment plan? HA! Right now, I do bare minimum to deal with the daily pain and dislocations. When I hurt, I rest the limb and try and distract myself from the pain. When I dislocate, I rest, ice the limb and sometimes take some advil or something over the counter. I try to avoid medicines as much as possible because of the damage they can do to your body. Other than ice, rest and some advil, I have no other treatments other than taking a hot shower to relax. I am doing fine without extensive treatment right now but I know that I will need more and more as life progresses. I think that it is easier for me to live with such a relaxed treatment plan because I am able to make the adjustments I need to deal with day to day life. For instance, at home I use a walker to help navigate and I sit when needed. I also have an amazing family that is there for anything I need. My brother is a pro at setting up my ice machine and I can’t thank him enough for everything he helps me with. I am happy that I am on a minimum effort treatment plan right now because I am young and I do not like the idea of being held back by the plan set in place for me to survive. We will see what the future holds but for now, I am content.
Another day, another post. So the question is…
What healthy habits have you adapted since getting diagnosed?
Since being diagnosed I have changed some of my habits but I haven’t changed tremendously. These have included… Continue reading
So, we all know that I have Ehlers-Danlos Syndrome and that it makes my life just a tad bit harder sometimes. I deal with dislocations and pain on a daily basis but I feel that it is important to try and describe the severity and ridiculousness of my dislocations. If someone without EDS dislocates it has to be some sort of accident or tragic event. It does not have to be so dramatic for me. Listen to this story about how I dislocated yesterday…
I was walking into a store to grab some stuff for school and I sneezed. Whelp, that was it. I sneezed and somehow that dislocated my knee! Crazy right? That small amount of movement made a totally different part of my body dislocate. This is what it is like for most zebras. The smallest things can make us dislocate. I have dislocated sitting, standing, laying down, sitting in class (a friend could tell you many stories about this), etc… As you can see, it takes almost nothing to make me dislocate. The point of me telling you this is not for you to feel bad, trust me I thought it was hilarious, it’s so that you understand how fragile most of us are. To everyone around me yesterday I was just a girl who was laughing because I sneezed, they probably thought I was being weird. What others didn’t realize was that I was laughing at how ridiculous that dislocation was. No one would have known I dislocated because I was laughing through the pain. (Laughter is the best medicine, right?) With this post, I am only asking you to understand how fragile people can be under the skin before making snap judgements based on appearance. We may not look sick but under the skin is a whole lot of zebra print.
If you have any funny dislocation stories you would like to share, please comment them down below.
The following is a list of questions answered by my fiancé. I asked him to answer questions related to what it is like to have a spouse with EDS and have not changed any of his answers. I hope that this can help give insight into how others affected by EDS handle it and what their lives are like. I am so thankful to have someone as supportive and loving in my life and want to thank him for putting up with me and all my zebra tendencies.
- Explain EDS in your own words.
EDS to me is a chronic “invisible” disease that limits the mobility of one’s body from accomplishing certain everyday obstacles.
- What is the hardest part about having a spouse with EDS?
I think for me, the hardest part is keeping in mind about how much we do together in a single day, whether it is going to the grocery store, hanging out with friends, even long car trips, makes it difficult for her at times, and that’s something that I always have trouble with.
- What is the most rewarding part about having a spouse with EDS?
The most rewarding part about Tori having EDS is that I have gotten to see over the last 4 ½ years, how strong she has become. Even though she is in constant pain 24/7, she never lets it get the best of her.
- In your opinion, what is the hardest part of your spouses life with EDS?
I think the hardest part about Tori’s life with EDS is that she is in constant pain. The smallest tasks can sometimes be almost unbearable for her to get through, but I’m not sure how she does it, she always seems to reach her goals without even slowing down!
- Does having a spouse with EDS differ from having a spouse without EDS? How? Why?
Yes, it does differ having a spouse with EDS, due to the fact that it is so rare or invisible if you’d rather. You can’t see it, so you never know how someone with EDS is feeling at the time, unless you really understand what EDS is.
- What are the challenges that your spouse faces?
She experiences different challenges daily. It can be getting out of bed, taking a shower, picking something up off the floor, or even holding her cat.
- How do you think it will affect your future together?
From what I know about her case of EDS, is that as it progresses, her ligaments will slowly begin to get stretchier and stretchier to the point where she may have to begin having surgeries to fuse her body parts into place, but no matter what, the more that we learn about it, the easier it is to plan out our day to day routine(s).
- Does it scare you?
Excuse me, but yes, it scares the Hell out of me at times. I’ve been there for good days, bad days, and worse days, and it’s never easy going when it’s a bad day, let alone a worse day. A lot of times I feel like I am helpless when she has dislocated or subluxed. I have no idea of what pain she may be in or what I can do to make things better. Luckily she is able to coach me through a lot of times what she needs, and what I can do to help her and make her more comfortable.
- What are you most proud of when it comes to your spouse having EDS?
How strong minded, dedicated, and motivated that she is. Always going that one extra step to make it through the day, hurting or not, always helping someone else in need, and how amazing of a person she has become despite her disease and discomfort.
- Anything you wish to add?
(Personal Message): Tori, you are truly and inspiration and have played a huge roll in helping me understand this invisible disease that you suffer from on a day to day basis. I can’t imagine what you go through, only what I see for myself. You are one of the most amazing people that I have ever met, become friends with, and have had the chance to get to know you on a level that many others haven’t. You are a living superhero. No matter how bad you may be hurting, you continue to strive to make a difference in other people’s lives. Always putting others before yourself, and helping them make the best of their situations. I Love You!!
Before I begin this post, I want to mention that this is something I never talk about but I promised myself that I would put it all out there in attempts for those of you reading to better understand the zebra lifestyle. Please understand that not all zebras feel this way and that this is just the way I feel about my situation. Also, as I have said before I encourage comments and questions but remember, “if you don’t have anything nice to say, don’t say anything at all.”
The question for the day is…
What were your initial thoughts about being diagnosed?