Lion's Roar

Sometimes things just suck.

     Whoever said, "What doesn't kill you makes, you stronger," probably wasn't dealing with an exhausting disease that has a shelf life of maybe four years, give or take...depending on diagnosis and treatment. I don't know who said this, they could have been dealing with something much worse then I have been in the past 5 years (3 years since I have been diagnosed, about).

I have asked, "why me?" countless times. 

     I have given in to the pure gutless emotion of 'being sick' and having people 'feel sorry' for me. It's not something I am willingly admitting to. Not something I ever thought I would openly admit. But, why bother to write about having Pots Syndrome at all if I am not willing to talk about everything when it comes to dealing with this 'invisible disease?!'
     As a junior or senior in high school if asked where I thought I would be at 23/24, I would have answered: likely graduated from college, out on my own with a job, in a relationship/engaged. Thinking about a wedding, family, house, and pets. 
     Instead, I am taking a semester off school because I am concentrating on my health. School is really hard for me because it is exhausting. It's hard to describe 'energy' because I haven't felt true, natural energy in so long. The brain fog is another issue. I am constantly struggling with memory and simple fact retention. I constantly feel like I am in a 'fog/daze.' It becomes apparent when talking with me on a daily basis, not something I am proud of. Have yet to graduate, like I had hoped to at this age in high school.
     As for a job, I am not officially working, outside of my etsy shop, and small things I do for others. I don't have the energy to. I am blessed with amazing parents, who are extremely supportive and understanding. Even tho, I know even they get irritated because my progress is minuet, and even stagnate at times. In fact, it is hard to tell I am making progress at healing at all, unless you evaluate how bad my condition was three years ago, to how I am doing now. All of this has been so hard on them, I wish I could do better, just for them. Parents should never have to see their child sick, especially like this.
     When people ask me how I am doing I always try to fluff up my recovery and make my progress sound like all goodies and gum drops. I don't want people to feel bad for me. When the truth is, I am struggling. Being sick sucks. That's just the truth...but when people ask how I am doing in a social situation, they aren't really asking to hear about how I am. For instance, how sick my medication makes me, how I get migraines all the time, or how I am allergic to everything, so my treatment gets messed up because I can't take the correct pills. Really, who wants to hear that? They are asking to hear about how I am getting better.
     Some may say I am callus. Fine. My view of life has changed a lot in the past couple years. Others may say this doesn't sound like me at all. It's probably because I am having an 'off' night. But, the feelings are true.
     Everyone struggles with things. I have struggled with this for a long time. Tonight, I found the courage to write it all down.

To the Lion's Roar,

K

<3

Kismet

I found this awesome phone cover, unfortunately it's an iphone cover. I looked for a similar cover for my htc Evo, but was unable to find anything of comparable style. Also, who died and decided that you need to pay $35 for a phone cover?! So, I am making my own. It is going to be a lot cheaper too! At $7 for the actual phone cover, $4.50 for the studs, and some super glue...I am coming out way ahead.

I currently have this case on my phone (I got it for $4, I <3 ebay). After browsing all the cases available for the htc Evo, and seeing how expensive it would be to obtain an new case, I decided to make some changes myself. After ordering the pieces for the black case with studs, I decided to make some changes to my current case. I ordered some black crystals to add to all the black areas on the leopard spots. It will add some texture and sparkle to the case at a cheap price.

I just saw these at Jewel. Ahhhhh. I am probably the most 'unlucky' Irish girl you have ever met (hello Pots Syndrome...rare disease)! I still love these pins tho. I am excited to get one for my best friend as a little surprise. My bff has loved St. Patrick's day ever since I can remember; we were three when we met. I also found another little trinket to send to her, and something for her little girl to wear on St. Patrick's Day.

Meet the new little love in my life! My best friend's little girl. She is three and a half months, and an absolute dream. Not a fuss or a cry-fest the whole time we were together. According to her Mommy, she is a really happy baby and barely cries at all.

.Beautiful Girl.

She looks so much like her Mother.

It was so wonderful to be able to spend some time with my bff and meet her gorgeous little girl!

My bff almost died during child birth (she had unseen, rare complications...she & I are like 'peas in a pod' according to her Mom). So I was so happy to see her again!! It had been decided ahead of time that I would not travel to be with her during labor and birth; but would wait to visit her & her little girl after all the family had come and gone. That way I could stay for awhile; and we could have time together, with the baby, and her immediate family (who are like family to me, they played a big part in raising me). After what transpired during the precious little girls birth, I was really sad that I wasn't at her side during everything. I felt like I should have been there, no matter how little I could really have done for her.

I know this post has been really picture heavy...I LOVE pictures. I recently downloaded this new 'retro camera' application for my phone. I was playing with it tonight. It is a more fun then a barrel of monkeys.

I you haven't yet checked out my etsy shop MooseTradingCo, I'll kick you!! Jk. But, please check it out. I would love your support. I am beginning to work on some new spring items. Especially a new English Driving hat that I am really excited about.

Chocolate Chips & Peanut Butter,

K

<3

Moose Trading Co

Moose Trading Co

Please check out my new Etsy Store, Moose Trading Co. There you can buy or commission all different kinds of hand knit items. There are already expamles of what can be ordered on the site. If you do not see what you want there, sent me a message through the store asking for what you are looking for and I will do my best to fit your needs.

Knits & Wits,

K

<3

{Crazy Pills}

There are parts of 'being sick' that people just don't discuss. For reasons I am still not completely clear on, but it's just something that is just not done. Well, I am going to break that silence.


All the medications that patients are prescribed to treat their to treat their ailments are wonderful. They help with the pain and specific issues that each individual disease entails. What is not really discussed are the side effects of those medications and the effect they have on the people, who are already sick, taking them.


One of the medications I am on is a daily preventative medication for migraines. When it was prescribed to me the nurse sat down with me and went through all of the side effects I might experience with it and how it had affected other patients. 


This drug is nicknamed 'the stupid pill' by those who take it. 


That should have told me something right there! I forget simple words, for example, table. I can tell you that it has four legs, it's made out of wood, you can place things on it, etc. But, I just can't think of the word. It is very, very annoying and makes me feel/look stupid. It happens all the time.


This medication also makes pop taste horrible. When the nurse first told me about this I didn't believe her. Then, I experienced it for myself. Diet Coke (which I LOVE) tasted hOrRiBlE, along with every other pop. This started after I took the first pill.


Oh, the list keeps going.


Some people use this pill specifically to loose weight. That is not what this medication is actually intended for; but, it is big side effect. I forget to eat a lot. When I do eat, I eat a lot less then I used to. 

The medication I am on for my heart is another whole story.


When I was first prescribed the medication for my heart I was a mess. I had to take one pill three times a day. The medication made my heart race and feel like it was going to break out of my chest. It was not comfortable at all.


I was also on an emotional roller coaster. I would be happy and full of energy for a little bit, climbing the walls the next minute, and then depressed for no reason.


The combination of my heart racing and being on a perpetual emotional roller coaster made me feel extremely paranoid. It was not fun. Nothing felt normal to me. It felt like I was on constant alert.


When I would start to feel more equalized or 'normal' again it would be about time to take the next dose of meds.


As I was having trouble with this medication when it was first prescribed; I found out that a woman in the community had just committed suicide. She had just been prescribed the same medication I was having trouble with, her reaction to the changes the drug induced had been life altering.


That was extremely scary to think about at the time. I was not in complete control of my mind or actions, and this drug was supposed to be helping me?!


It came down to the fact that without this medication, my brain was not being supplied with a healthy amount of blood. So, I stayed on the medication and learned to deal with the side effects.


I am thankful that over time I have had to deal with these issues less and less.

Chocolate is the Best Medicine,

K

<3