Pain Meds and Me

Pain Medication and Me

I can't decide if I like or hate the pain medication. It seems like we have a love hate relationship going on. I love that I can clean my house and do way more than normal on an average day. There is a lot to catch up on over the many days I was unable. That feeling is overwhelming but knowing I have medication for the days coming gives me hope that I can get caught up and in a decent time frame.

On the other hand, my head feels fuzzy. I feel like I have more irritability and less patience as if that wasn't a problem to begin with! It was. I don't like the idea that I have to pop a pill just to measure up to the ability of the average person. I don't like feeling like my head is fuzzy. I don't like how my body continues to drag as if I am exhausted from the pain I usually feel but am not feeling so much now.

If you are wondering if I am addicted then know that I am not. I have only been on pain meds for 10 days now. I was on them for about 10 years and it was just like this before too. I was on them with xanax too though which not only helped me with my regular anxiety problems but also reduced the increased irritability and loss of patience I am dealing with now. If you are wondering if I am dependent then know that I am. I depend on them to have the abilities of an average person. The pain I deal with everyday is lessoned to the point that I can push through and look like everyone else trying to do so. I will still have my sudden pulled muscle, subluxation, or sprain but not the chronic daily pain keeping me from enjoying life and getting stuff done.

For so many examples we can not just have our cake and eat to too. I am open to any suggestions on this. For now I will remain thankful that I have any treatment and hopeful that I can set new goals and reach them such as gaining new employment with higher pay and more hours.

It is now taking me more time to write my blogs as my semester ended and my college took back the Dragon Naturally Speaking software so I no longer have talk to text. They even do a remote uninstall to make sure it is returned, It will cost me $99 to buy my own personal copy of the software.

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How We Love Hanging Out With Our Friends

Did I ever mention I have a lake in my back yard? 

Well, this is the view from up at our house. It is hard to tell there is a lake back there.

Taking the path that runs along the side of our property reveals the lake close up.

This perfect fishing spot even has room for tents back behind the shot!

If you look really close, you can see the neighbor's boats in the distance.

I love camping, fishing, and all outdoor activities!

But I don't do them.

While everyone is enjoying outdoors on Memorial Day Weekend, I remain indoors creating this blog and grieving for those I have lost and military members who died for our freedom. If you are wondering why on earth I stay cooped up, please let me explain. I have Ehlers Danlos Syndrome in addition to a two and a nine-year-old child. Check out the view from the lake going back home...

That's a steep path!

No matter if we weed-eat it is still a steep road, but there is an end.

Going to the lake and back one time takes away my spoons for about half a day! Imagine what I would be like if I went back up because I forgot something! (I tried it, so I already know.)

If the spoon mention confuses you, please refer to the spoon theory written here.

This photo helps me illustrate.

If I didn't have Ehlers-Danlos Syndrome, I would be making out invitations before every holiday and inviting friends and family down to fish at the lake, have dinner, and enjoy each other's company. 

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Don't Cry Over Spilled milk!

Don't Cry Over Spilled Milk?

You guessed it! I just bought a gallon of whole milk for my youngest and my wrist gave out and lost it all over the kitchen floor! It looked like a flood. It is not as if it has never happened before. Over the years I have lost countless gallons of milk but today it really got to me. Sometimes my wrist will give out and other times I think I have it on the counter when it was too close to the edge. I had tears.

Ehlers Danlos Family Contributions

It is time. 

One blog featuring families in need who have Ehlers Danlos Syndrome has been created. The mission of the blog is to provide one stop to find a way to donate to the various nonprofit centers for research to find a cure as well as individual families who need help.

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"1. Lack of information from doctors world wide. People with Ehlers Danlos Syndrome usually travel many miles to seek treatment due to scarce familiarity with the condition.


2. Systemic problems occur. Very few people or none with Ehlers Danlos Syndrome have no other medical problems diagnosed. The other diagnosis' are often but not always secondary diagnosis to the Ehlers Danlos Syndrome.



3. Often people with Ehlers Danlos Syndrome are minimized. They are told the problems, being so many, are all in their head. Many have been diagnosed with psychiatric disorders that do not fit them.



4. People with the Vascular type of Ehlers Danlos Syndrome have a lower life expectancy. People with any type are at risk for life threatening complications."

The hope is that for every $20.00 donated to the cure research that $1.00 is donated to one of the families currently struggling with this debilitating systemic congenital condition to aid them to a better quality of life. Such families are found along the right side of the blog.

This community really needs your help!

Click here to view: EDSFC

The Doctor Turned Me Away

My doctor tells me that I have both a bleeding disorder and a clotting disorder. I am so confused! Apparently, so is he. It's like taking a Toyota to a Ford clinic to be worked on he said.

Due to the lack of experience with my condition by doctors in my area, I am waiting on details of where I will be sent. I was diagnosed with a bleeding disorder and a clotting disorder. I will be sent out of state in search of a care team. Ohio Children's Hospital or Mayo is looking likely pending resources for overnight stay, travel expenses, daycare for children at home while I am away, and any possible insurance involvement in my needs for specialty care. We remain hopeful I will get treatment of any kind soon. The upright MRI in Carmel would be so helpful in determining treatment. Your support means so much!!!

                                     Trying to remain strong for my babies everyday.

Cervical Instability

Hello everyone! I hope you are enjoying the blog. All I could think about lately was the pain that goes on everyday but Im not going to get on here everyday and whine about that causing my blogs not to want to be read anymore. Instead I slap on a smile (call me fake idc) and continue onward.

Today I want to talk briefly about cervical instability. Many with EDS complain about neck and back pain daily. It can get really bad too. I would love to put my head down about every hour for a good 15 minutes all day long. Of course I cant do that but when I get the chance it does help me get through the day. You will find me trying to hold my head up with my wrists very often. Yes it does make things worse for the wrists!! Today I am thankful of my pain scale not being a 10. Woohoo! Tomorrow is Halloween and I plan to take my kids out so I imagine I will be worthless November 1st hahaha! (I laugh but it's not funny. Not really) But that's ok I will pretend I am fine and try to get myself to believe it. Its hard to understand how that does seem to help, although very little, it does. A positive attitude will get me as far as I can go in life. I choose to stay positive for myself and my family! So slap that smile on and fake a good day if you have to. If I believe there will be more Ehlers Danlos Syndrome awareness in our future than it will come true? The power of attraction wins!!