Just….no.

This lady sure is missing her books! Yes, I’m talking about myself. Just wanted to update you all on what’s been going on! I get a lot of questions and it’s easier to reply this way as I get worn out easily and don’t check my messages as often as I should!

My beautiful view…

I’ve been confined to bed for the most part. I’ve gone out of the house less than 10 times this year. Yes, a fourth of the year has gone by and I haven’t even left my home more than single digits. Yowza!!!

Good thing I love my cute home and my amazing family! ❤

I’ve been wearing a heart monitor for over 3 weeks now and have another week to go. I had an abnormal EKG and abnormal Echo, so I am waiting to see what this will produce. Fun times!

EDS (Ehlers-Danlos Syndrome) is known to have heart problems attached to it, so I’m not too surprised!

“Three heart problems associated with hypermobile Ehlers-Danlos syndromeinclude autonomic dysfunction, aortic root dilatation (enlargement of the blood vessel that distributes blood from the heart to the rest of the body), and mitral valve prolapse. About 1 in 3 people with hypermobile EDS have autonomic dysfunction.”

I also had some blood work done and we found a few concerns that we are looking into a bit further. (ie: more tests and more blood work)

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I still can’t read hardly at all due to the strain on my eyes and head. It’s terribly sad, let me just tell you! I am hoping we can get to the bottom of this and I can get back on track! It’s seriously gone from a Disney trip and my awesome vacation to meet a lot of you lovelies in August to not even being able to stand and make a sandwich for myself! I can’t even shower very often – meaning that I have to use those hospital wipes and dry shampoo!!

Barf.

Double Barf.

I appreciate your prayers and concerns. Unfortunately, it’s extremely overwhelming right now to have much company. (Yes, even as much as I love you all and miss you!!)

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My Life with EDS?

I am often asked about why I’m always feeling so terrible. frazzled-woman-cartoon-paid-forWhy am I so sporadic about posting and reviewing? Why do I barely leave my home anymore? And, if I am home all the time, why am I not reading, reviewing and posting?

I am going to attempt to share my story here. I would love to say that you will have all the answers and completely understand after this post, but I am sure there are many that have their own viewpoints. keep-calm-and-power-through-9There are many that believe those of us with chronic conditions need to just “suck it up”.

I was one of those. I used to say that all of the time. That is my personality.

God knew I needed some compassion, so remember while reading this that it’s better to have compassion without God needing to teach it to you! ha 🙂

Flowers & Plants

When I was younger, I was very outgoing and active. I always had friends around and was busy with every activity I could fit into my schedule. When I was 18, that all caught up with me. My body just crashed. It wasn’t all the activity, necessarily, but my body was not strong enough to carry all of that and I hadn’t known it.

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I spent the year of 1996 confined to bed. I just couldn’t get up. I was so tired. Getting up and going to the bathroom was enough to make me need to take a few hour nap. It was unbelievable. I had no strength.

As I slowly built back up, I started back into all my activities again. This time, however, it wasn’t the same. I was a lot more tired and edgy. I would get angry a lot easier.

As years passed by, pregnancies and life got in the way, my pain became more acute. Doctor appointment after doctor appointment with nothing to show for it. “Do more yoga.” “Swim more.” “You just have fibromyalgia and chronic fatigue syndrome.”

Then there were the “friends” with statements and questions such as: “Why do you need a name for it so badly?” “Why don’t you just juice?” “Why don’t you exercise more?” “Why don’t you just push through the pain. It’s mind over matter!”

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Now, I know their intentions were good (at least I hope they were!), but anyone with chronic pain will tell you that those suggestions are not helpful at all. Chances are very high that we have already heard of all those diets that will help. We’ve done the research. We’ve tried to find the answer.

Thankfully, I am very blessed to be one of the few that actually DID get an answer. When I was 37, I finally found out that what I have is called Ehlers-Danlos Syndrome (also known as EDS). It takes many forms and affects people differently, but if you want to have a basic idea of what the side effects are, just click here.

Let me give you the quickest way to describe EDS to you (at least the form I currently have). Every person has ligaments that are used to hold your skeletal system together and in place. When you work out, you stretch them and then they tighten back up stronger.

For someone with EDS, that’s not always the case. For me, my ligaments never tighten back up. Every time I work out, my ligaments stretch and stay that way. You can imagine how loose they are around my skeletal system. So, all those years of yoga? Worse thing the doctors could have told me to do. In their defense, they had no idea. But, this is why it is SO IMPORTANT to continue pushing until you find the answer! Yes, a name is important!

Because my ligaments are so stretchy now, they are not able to do their job and hold my skeletal system securely in place. My muscles try to overcompensate by tightening up, but this just causes even more pain and trigger points. My skeletal system is free to move about and frequently “pop” out of place. Ever had a slipped disc? Mine slide as I walk or move.

That is just the very beginning of what it does. The pain I am in on a daily basis is, at most times, unbearable. I must completely trust in God to give me the strength I need for each day for I cannot think of the future.

I don’t sleep. I don’t do much. After years of not knowing what I had, I found that the advice I was given only made things worse. I am in such terrible shape at 40 years old. Some of my personal symptoms (aside from overall pain):

  • High Blood Pressure
  • Under-active Thyroid
  • Accelerated Heart Rate
  • Fatigue (unable to even lift arms or stand at times)
  • Restless Legs (Causing my entire body to jolt)
  • Sciatica
  • Migraines
  • Tension Headaches
  • Severe Trigger Points all over
  • Eye Weakness
  • Knees are sprained in a permanent state
  • Constant shifting of my back (and everywhere, really. The pain is worse in my back.)
  • Foggy Brain
  • Unable to sleep more than an hour or two at a time (3 hours of sleep is a good night for me)
  • Delayed Sleep Syndrome
  • Inability to make very many new memories
  • Slow processing time when talking to people and responding
  • Arthritis in my hands and lower back
  • Inability to plan ahead
  • Overstimulation
  • Inability to turn head left and right due to tight muscles in neck
  • Confusion
  • Fragile bones
  • Simple tasks (like showering, making a meal, etc…) are so overwhelming that I often cry and feel like I am going to throw up when I know they are coming up or while I am in the midst of them.
  • Reading (one of my FAVORITE ACTIVITIES) causes headaches, fatigue and can not distract me from my pain enough to continue for long periods.
  • Anxiety to go anywhere because I could get stuck feeling too terrible to get home.
  • Anxiety to go anywhere because there are people there.

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I am sure that I could continue (and my family could offer a list twice as long). However, you get the idea.

Now, what am I doing about it?

Well, there is no cure for EDS. It is only pain management. Realizing that, I went into this trying to find things that would remove the pain so I could function normally. I have had everything from trigger points shots, acupuncture, dry needling, pain patches that pumped narcotics into me 24/7, and much, much more. I came to realize that none of that did enough to be worth the effect it would have on my body long term. Years of chiropractic work, yoga and swimming have completely destroyed the stability of my ligaments.

'The voices from my prescription side effects say you should consider lowering the dosage.'

Now, I am on minimal narcotics (by my choice to avoid addiction and constantly raising the amount as I become acclimated to medicine quickly). I try to use as many homeopathic remedies as possible and pray for wisdom.

So, there are so many things that I have mentioned here that are difficult to deal with on a daily basis. How about the things I am really thankful (in-spite of it/because of it):

  • My husband and sons have learned compassion. They watch out for me above their own needs.
  • I have learned compassion as I used to be annoyed by people with chronic problems.
  • My faith has grown and my relationship with God is amazing. I have had to cling to Him and learn to trust Him throughout all this. I would be in a state of hysteria if it wasn’t for Him and His peace. Nobody could ever convince me that God doesn’t exist because my relationship with Him is so intimate that I lack all doubt.
  • He has slowed me down. I used to always race around like crazy doing a million things and had no time to be still. I was angry because I was so overtired. Now, I am home and able to be a good mother and wife. I’m not too busy to love my family and be tuned into them.
  • I recognize my true friends.
  • God used it to save my son’s life (That’s a story for another day! You can email me if you want to hear about that. aTransParentMom@gmail.com)

Again, there are many things I could name, but my blessings far outweigh my troubles.

In my distress I called upon the LORD;to my God I cried for help.From his temple he heard my voice,and my cry to him reached his ears.

Yes, these are true. These are absolute truth. These are the things I cling to.

thinkingof youI pray for you, dear friends, as I know that chronic pain is something many of us struggle with. Unfortunately, many others do not recognize it for what it is. They don’t understand why we are skittish about scheduling things and often times have to cancel. They do not understand why we don’t just power through or juice or whatever. They don’t understand why we can look normal and healthy but say we feel as terrible as we do.

I get it. Hang in there. Find a way to give God glory through your pain and He will bless you more than you can imagine. You will begin to be thankful for the suffering. You will see how it has blessed your life (truthfully!). God can only show you the blessings and give you peace when you are content in His goodness. Trust Him. There’s a reason that you have it. Use it for His glory. That is what I have chosen and it has saved me from so much worse. It’s saved me from sever depression that is my constant shadow. It’s saved me from anger towards everyone around me. It has saved me from literally going crazy from pain.

He is worth it. He is what He promised. Run to Him for dear life and He will hold you in His arms through all of the difficulties.

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But…if we are being honest? This is what my husband usually gets to come home to.

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Life as it is.

A lot of you know that I suffer from Ehlers-Danlos. For many years, we didn’t know what it was. I was told I had Fibromyalgia, Chronic Fatigue Syndrome,  and a host of other things. “Yoga” they said. “Swimming” I was told. So for 20 years I listened. 

Ehlers-Danlos is easily explained. Your ligaments are what support your skeletal system. They hold your joints in place, your head up, and keep your body straight. When a person exercises, your ligaments stretch (especially in yoga) and your joints get moved around (especially in swimming). This is a good thing. When you are done, they shrink back tighter and stronger. A person that has Ehlers-Danlos Syndrome isn’t so lucky. The ligaments stay stretched, thus getting looser and looser. My muscles realize that I have no support, so they try to overcompensate by flexing and tightening to hold my head up, to keep my joints where they belong and to help me stand up straight. My joints want to continually pop out of place (swimming is one of the main causes of this).

Because my muscles are tense all of the time (try flexing your shoulder and neck muscles and see how long it takes before you are sore), it causes all kinds of chronic pain. It causes Fibromyalgia. It causes Chronic Fatigue. It causes many, many things. The dr. told me that my body was that of a 70 year old. There is no cure, only pain management.

Unfortunately, over the last year, it has rapidly accelerated into a force to be reckoned with. I find that I can barely leave the house. Research, vitamins, juicing, and high powered prescription meds have made the pain bearable (sometimes). Unfortunately, it has gotten to the point that I have no energy. I can barely go to the grocery store. I have had to leave the cart and get help out to the car many times because I hit a “dead end”. I cannot support my body to stay upright. I cannot even lift my arms at times.

Why am I sharing this? Because I know so many women that are struggling with chronic pain and feel like they are alone. They can’t get answers and start to feel like they are just crazy and need to suck it up.

The truth is, God created us and gave us this path. It must mean that He can be brought the greatest amount of glory through my suffering. Through your suffering. Start looking at your life through the lens of bringing Him glory and it will be a little less overwhelming.

My husband and sons are the most compassionate people I have ever met. It wouldn’t be that way if I wasn’t sick. They are true servants. My son, that is a junior in high school, will make dinner almost every night. He does so many of the chores around the house and it’s all without me asking. He does it because he loves me and wants to serve me. I can see how that is training him to be such an amazing man.

I used to always feel like people needed to “suck it up” when they felt sick. I had no idea. Don’t ever wish that on someone or God may show you what it feels like.

So, what now? I choose my activities very carefully. What is most important. If I do this today, I won’t be able to do that the next two or three days. My son needs this? It’s that important to him? Ok, well then, we need to do that and I don’t get to do my girls’ night out. (what is that anyway? I haven’t had one of those in a MINUTE).

Here’s the kicker: James 1:2-4

“Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.”

Did that say “don’t try to get out of anything prematurely”? DID THAT SAY, “DON’T TRY TO GET OUT OF ANYTHING PREMATURELY”???? No more internal screaming. That takes a WHOLE LOTTA God. That’s where the “I can do all things through Christ who strengthens me” come into play.

If you are not one of the many that has to deal with chronic pain, please be the one that is there for those of us that do. People feel like they don’t know what to say, or they get annoyed because we can’t always hang out, or just don’t get it and want us to “suck it up”. Please don’t be that person. Send a card in the mail that you are thinking of them and praying for them. Bring by a dinner and let them know you love them. Send them a text to let them know you care.

I am VERY lucky to have the support I do from my family. But so many people out there don’t and they are seriously going crazy. It’s scary, lonely and absolutely horrible. Be Jesus to them.