Thursday, January 16, 2014

Two Weeks Eliminates One Year Of Healing

It took me over a year of extremely hard work to actual start to feel a life where I was somewhat "normal". Over a year of extremely hard antibiotics, oral but mostly through IVs several times a day, every day. It only took 2 weeks of back sliding, of the wrong kind of orals, no PICC, something to put me right back to where I was a year and a half ago. 

Granted I started to get worse back in Decemeber right before Christmas. But these last two weeks I've started with the problems walking... And it seems like everything got extremely worse, extremely fast. I haven't driven in a couple weeks because I'm just too exhausted. I don't want to cook anymore, I can't bring myself to sew... I don't like this.

I don't want the rest of my life to be like this... What if it is? What if it's this constant back and forth; fighting so hard for so long, only to have a couple months of happiness then to be thrown back down in the sand to start the year long process all over again... I just want to have a normal, happy life. 

One of my biggest fears is that Lyme has ruined my whole life. It had already ruined completely a couple years, messed up majority of college and high school...but the fear is that it has completely ruined my whole future and my ability to be a normal person.

Wednesday, January 8, 2014

Lyme Disease Kills

It has come to my attention recently that a lot of Lyme Disease sufferers have been passing away recently.

I remember when I was first diagnosed with Lyme in 2008 the first thing I did was google if Lyme disease could kill. To my relief the results all came out the same, that you couldn't. Knowing what I know today I know that is very far from the truth. Check out this website to get an idea for yourselves:  http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html take a minute and scroll through all the pages of those who have died from Lyme disease and take a look at the ages, it's scary.

What's even more scarier is that these deaths, some of the time, are indirectly caused by Lyme, such as lack of proper medication, but a huge factor in Lyme deaths is depression.

It's hard for tho who aren't sick to imagine what anyone with a chronic disease is going through, no matter how hard you try. It reminds me of mortuary college; we were always taught never to say "I know how you feel" because there is no possible way for anyone to completely understand the pain any person is going through in that moment, no matter how closely related your experiences are. Those of us who suffer from Lyme disease have a huge range of emotion we experience each and every day. The one I'm most guilty of is why put the people I love through this, and why put my boyfriend or friends through this junk when they could probably have a better quality of life knowing they don't have to take care of me. In the same respect as they can't know possibly how I feel, I can't possibly understand that these people love me and would do anything for me, it's a catch 22... I guess. 

Luckily I have that in my life; I have friends who have been there for me through everything I have gone through and will always be there to back me up and help me, no matter how down or how sick I am. I am lucky to have my family who supports me and are able to help me with my treatments, both financially and physically. There are so many people out there who have family and friends who turn against, or disassociate with them because they can not comprehend or even wish to understand what that person is going through with Lyme disease. So many people lose their family, so many people lose their friends, just because they don't want to open up and they don't want to try and sympathize and understand the consequences of Lyme disease.

When your family and loved ones have turned their back on you, where else would you turn?? Suicide seems to be the most popular answer. And not just because no one understands them; there's so much more too it with Lyme than that.

When the people you love don't understand you and don't support you, you will have problems with doctors believing everything you're going through. I has one doctor tell me that if my mom hadn't been in the room with me, he would have believed I was making everything up. There's so my with Lyme disease and so back and forth with all the possible symptoms, to uneducated, non-Lyme friendly doctors it seems unreal. When you can't get the support from family or from a doctor, you can't get properly treated.

Support isn't the only reason Lyme sufferers turn towards suicide, the symptoms can be very unbearable. I have talked to a lot of people who have both Lyme and have gone through chemotherapy, majority of them have said to me Lyme is worse. I've been told they both feel very similar to each other except Lyme never ends. I will admit that I, myself, have had days with symptoms so bad that I understand those commit suicide because of it... It's a never ending cycle, when you feel good, you fall back down again and that is the worst feeling in the world. I would never consider suicide, I have family and friends who will support me through all of it, and I am lucky enough to have finances available to see one of the top Lyme doctors in the nation. I've also never been on to give up. But I can truly see why so many have, and no one could possibly understand that until they have lived a day with Lyme.

The Lyme suicides could possibly be cut down in numbers if we just told someone we loved them. Not tell them their treatment is wrong, they aren't in as much pain as someone else or there's always someone else worse out there, but just that you love them. (More on the weird competition that seems to go on with Lyme patients in another blog entry.) if you know anyone with Lyme, just tell them you love them and you care about them. Also, don't be thrown off if they seem okay, Lyme patients are really good at faking "feeling good". It's our hidden talent.

Please share this and tell at least one Lyme you love them today; it'll make their day, and maybe prevent another Lyme death.

(There is so much I didn't cover reasons why Lyme suicide is a thing.... There are so many reasons things can go wrong with a Lymie.)