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New Here, Needed a Place to Furiously Write About My crapty Life

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Posted 5/3/2016 10:59 PM (GMT 0)
Hello everyone, just joined here a few minutes ago. I need some support, maybe even counseling. Not sure what I need or what I'm trying to accomplish with this.

So a little background on myself...My name is Mark, I'm 15 years old and a freshman in HS. I got diagnosed with Lyme on July 26, 2015, but I think I've had it since I was ~6-7 years old (about 8 years ago). I live in northern VA, specifically Loudoun County, which as some of you may know, is pretty much the Lyme capital of the world. I used to be the smartest kid in my class, the fastest kid in my class, and one of the best basketball players of my class. Lyme has wiped out all 3 of those titles like they never even existed. Especially when I started treatment once I got diagnosed.

So on to my life, here is a routine day for me. Wake up at 6 am, come down, have yogurt for breakfast instead of your average teen my age having donuts and bagels etc. Pack my lunch, get ready for school, and leave around 8 am. Now some of you may be thinking how hard school must be, and how much I must hate it. Well it is really the opposite, I LOVE school. It's my escape pod, where I have lots of good friends that are healthy, and being with them makes me FEEL healthy and like I'm normal again. Although my classes wear the hell out of my brain, feeling normal again completely outweighs that. Now don't get confused here, I don't physically FEEL normal, but laughing and having fun with my friends makes me forget about my crapty life with Lyme. As they say, laughter is the best medicine.

The problems arise when I come home from school. Once I come home, I am just dead. My body physically and mentally are just done for the day. I don't feel like talking to anybody, I don't feel like doing anything, all I do is my homework and come on my computer. But my parents try to talk to me, and I can understand that. They want to know about my life, and how I'm doing. My only sibling is away at college, so they don't have anyone else to ask the typical vague question that I can't stand while having Lyme, get ready for it, you know what it is..."How was your day?". I CAN'T STAND THAT. Especially when my parents know I have Lyme, my day is like a roller coaster, except people wouldn't be allowed to ride this roller coaster, because no matter how strong the seatbelts are, they would get flung out at top speeds and die. So, I just give them the simple answer, which is.."OK".

Wow, I took up a whole paragraph just talking about one question my parents ask me lol. I guess I need to condense this a little more. Then there is basketball, now don't get me wrong here, I used to love to play basketball. It was my favorite thing in the world to do, but with Lyme, that has completely changed. Any sort of activity involving exercise is just...really hard. I can't think of any other words to put it. It is just very, very, very hard. I used to be awesome at the sport, now I'm the worst on my team, which is the same team I've been playing with for 5 years (used to be the best). My dad won't let me quit, so until I go to college, which is still 4 years away, I guess I'm stuck playing. Even if I did quit, he wouldn't talk to me for at least a year. My parents just don't seem to understand me at all, which is honestly a disgrace, considering my mother also has Lyme, and has had it for who knows how long. My mom is better with me, but my dad doesn't understand me or my mother. Recently I've been getting suicidal thoughts, and have just gone into a depression. I have candida, so my diet is carb restricted to the extreme. I just don't know what to do, and just needed a place to write out all this crap. And it feels so much better now that I'm opening up, it feels great to know that people actually know what I'm going through now. The internet is an amazing place.

So, if you read all of that with Lyme brain, hopefully I didn't turn it into mush, but thanks for looking at this. Send some prayers, I don't think I'm ever going to get better, but I do believe in miracles, which is what I think the only thing that will cure me.

Have a nice day

Mark

Post Edited (Necer149) : 8/3/2016 5:35:18 PM (GMT-6)

Posted 5/3/2016 11:15 PM (GMT 0)
So much I want to say...don't want to turn YOUR brain to mush doing so so for now, welcome to the soup pot. We completely understand and go through many of the same things with our families and friends often answering the same "okay" because telling them otherwise just makes them sad.

You're a very remarkable, refreshing young man. If you haven't started writing online blogs you probably should.

At this moment I wish someone could impress upon your Dad that you need your energy to fight this thing. A little hoops when you feel like it is good. Wearing yourself out in competition is bad.

Many prayers for you. You will get a whole lot of support here. Read other's stories and questions and it will be quite an eye opener/education.

ETA: vent here all you like (says the person who hasn't been here long and certainly is no authority). That's what a support group does and is helpful to keep everyone aware we don't struggle with this alone. Share the crap or the good or anything you feel like.

Post Edited (julymorning) : 5/3/2016 5:19:33 PM (GMT-6)

Posted 5/3/2016 11:18 PM (GMT 0)
Many know exactly what You are going through.....You sound like a great Young man,this board is loaded with info that can help You.

Keep Your chin up and focus on getting better,focus on You.......and if You think counseling will help,do not hesitate,venting is good and it will take that "stress" off a body that wants to heal)

r
Posted 5/3/2016 11:22 PM (GMT 0)
Mark you impress the heck out of me and I would be proud to be your parent. You are articulate and very succinct and I know you know what that word means. I was a lot older than 15 when I learned its meaning.

You and your Dad have a problem communicating. He wants so much for you and you want acceptance by him. You need to have a nice talk. I suggest a public place for maybe a pizza (duh) where you can tell him how you feel about basketball. You aren't going to be Kobi Bryant and you know it. Tell him what you really want.

I'm glad you eat well and honestly I do not think I have ever seen such great typing from a 15 yr old. Once again, I am impressed.

If you need another grandma you can adopt me! And Mark, you definitely will be in my prayers.

I hope you have a great doctor and are in treatment. I wish nothing but the best there is for you.

I wish I could do more.....
Posted 5/4/2016 3:36 AM (GMT 0)
Hi there Mark and welcome to our club. It's a good club to be in if you have to be in a club.

I think Julymorning had a great idea. Why don't you start a blog. There are a lot of free platforms online for that. And write about your lyme experiences, how you're feeling, how it's affected your life, talk about lyme and treatment and its effect on your body.

It's cathartic, helps you process this part of your life, helps you keep track of your symptoms and how they change over time, supports your need to interact with people and could help share your truly outstanding perspective about finding joy with your buddies and in school. And it just might be a good way to reach your dad (maybe not right away but eventually). And if not, you still benefit in many other ways and probably end up helping others.

And I echo the comments about the basketball. Pushing your body like that is only prolonging your recovery. Period. There's no gray area with that. There's no bend. There's no give. There's no safe procrastination. And when the party comes to an end, it's not just a bad day.

The crash you experience at the end of your school day is basically the exhaustion of your body's "fight or flight" maxed-out adrenals mode that you end up in just to get to the end of the day. Needless to say, it's not healthy and if you continue forcing your body that way, you're working towards adrenal exhaustion. It's a dangerous condition that is astonishingly easy to find yourself in, and it's also tougher and tougher to recover from the more you allow it to go on unchecked.

I strongly urge you to take matters into your own hands (you're 15, after all, and you are almost an adult) and quit the team for now. Your dad will be fine--not right away--but eventually. And when he sees first-hand how much your health will improve, your energy level, your willingness to engage with them after you return from school, he will "get it". And then, when the time is right you can include him in your decision to get back into basketball and he'll love it.

In the interim, hope you find more things to post about, questions to ask, info to share. It's good to have you here.

-p
Posted 5/4/2016 11:24 AM (GMT 0)
Hang in there!

I was about the same age as you when I got bitten by an infected Tick. I was living in Minnesota at the time and had the classic red bulls eye. At that time (1959) it wouldn't have done me any good to go to the doctor. This was an unknown disease, they would have just said wait it will clear up.

I didn't realize I had Lyme until I was 60, when I heard a radio interview with doctor about lyme. I as also having problems with memory. Couldn't remember Sh__ (CSR).

Since I worked as an engineer dealing with high pressure steam plant systems, I opted for early retirement when it was offered...went out at 62.

I had thought I had burned out the lyme with massive Ultraviolet Blood Irradiation, but was wrong. It was part of the answer, but this bacteria hides pretty well. Also after having this disease most of my life I figured the bio-film in my brain was pretty much unreachable. Between the UBI and my Light treatments, have gotten the problem under control.

Is it a cure!

I really don't know. Is it at least keeping the problem in check....Hell yes!

Email me if you have any questions about what I am doing!

God Bless and hang in there!
Posted 5/4/2016 2:04 PM (GMT 0)
Mark maybe you should send over the below link to your parents to read what one person's life has been like the last 3 years dealing with Lyme. sure you aren't as debilitated as her but i found this story to mirror much of what us lymies think and go through in our journey. maybe someone else's perspective on the disease and being older will give your parents particularly your dad a jolt.

willtherebecake.org/2016/04/25/two-years/
Posted 5/4/2016 8:10 PM (GMT 0)
Hi Mark,

We live very nearby and our 14 1/2 year old was diagnosed is Nov 2015 after having it for years too - perhaps not as long as you but long. So much of what you say is so similar to what he is going through. He was sick Sun-yesterday so is back in school today. He too LOVES going to school.

He hates identifying with Lyme all the time but it sucks the life out a lot of his days. I'm sorry you are struggling with candida. This is a concern for us too.

As the mom and working part-time, I'm the primary caregiver to our DS. I found out the other day how hard it is for my husband to really get what DS is going through. A break-through came when DH worked from home on a sick day for DS. He thought DS looked okay and was surprised at how really sick he was - like somehow he didn't believe DS can only go across the hall to the bathroom and crawl back in bed - no coming to kitchen or moving around at all until he saw it for himself. I wish your dad could see that. As far as sports DS is just doing the best he can - he misses a lot of practices and it's been hard explaining it to the coach because he seems him on the good days (good day means 50% oxygen and fevers up and down all day) but the illness just isn't as visible. I think that's part of the problem.

It is so hard as a parent to juggle giving you guys independence you want and deserve at this age while seeing how hard you have to struggle and wanting so, so much for you to get better. I hope you have shared your depression with your mom and LLMD, especially any suicidal thoughts. These are the tick diseases and your LLMD should know what things can work for you.


I don't want to give out too much personal information but it would be great if there were some sort of way for kids like you to meet!

I know it's hard, harder than any of us without Lyme can ever understand but know that everyone here is cheering you on!
Posted 5/4/2016 8:35 PM (GMT 0)
Hi Mark,
Im so glad you found us here at healingwell!

It does help a great deal sharing your story with others who've experienced the same as yourself, eh? I liked reading your story, so thanks for sharing. You're an excellent writer.

So sorry You have to deal with this 'crap', especially at such a young age...well young to me since Im 51!!!

I would like to suggest you try U.V.B.I, as Claude mentions. I also did U.V.B.I., and I believe that the borrellia, bart, & babs is gone. I now deal with mycoplasma and virals, but my borrellia was erradicated by the ultra violet light.

I have post-Lyme syndrome caused by YEARS of wrong/misdiagnosis...so the result was/is permenent damage.

Anyway, thanks again for sharing and GOOD YOUR YOU, for persevering.

Oh yah, YES, Ill pray!
Posted 5/4/2016 10:57 PM (GMT 0)
Wow, thanks for all the support everyone :-)

I was having a pretty good day today, and to come home from school to see all the wonderful replies actually brought tears to my eyes. Happy tears, and sad tears. Happy tears because of this great community it seems I have stumbled across, and sad tears from reading all of your personal stories as well.

After reading my original post, I realized that I didn't post all of the good stuff. So, here goes...

In January 2015, I was diagnosed with exercise induced asthma. I couldn't go up the stairs without rapidly gulping up air at the top. This greatly imposed my running in basketball, and I had to carry around this bulky inhaler for emergencies, which would quite often occur. Also, the last couple years, my grades had really been sliding down a pretty steep hill compared to before. They weren't terrible, but I was certainly noticing a difference in how hard I had to work + concentrate to barely maintain an ~80-85 or so in the class, especially math which used to be my strongest subject. And in May of 2015, my life was at a low point. One night, after a basketball game, my right knee swelled up like a balloon. It didn't hurt too bad, but the next morning I was experiencing some of the most excruciating pain I have every felt in my life. I couldn't even get out of bed my knee was so sore.

So on to the idiot orthopedic, who couldn't figure out what the hell was wrong with me. He came up with some stupid diagnosis, I can't even remember what it was, but it was obvious to me he was just grasping at straws, and he really didn't know what had happened to my knees. And I can't blame him I guess, especially knowing he probably has no clue about Lyme, although he should, the reality seems to be that 99.9% of doctors don't know anything about Lyme, and the other .1% are specifically Lyme doctors. I went to physical therapy, was on some very strong pain meds, but nothing was happening. It wasn't getting better, or worse. It was then recommended by a friend that I may have come down with Lyme. Because the knee injury was the weirdest thing, it's not like I planted on it wrong in one of my games, or anything similar to that. It didn't hurt at all during the game, it was just that night where it swelled up like crazy.

So we went to the local Lyme doctor (Dr. C.W., great doctor for anyone in the Loudoun area), and I got diagnosed. Now, since then, lets go over all the achievements and progress I've made, the following text keeps me going daily, as I know that if I've beaten these symptoms, I can beat the rest.

My knee pain is 100% BETTER!!!!!!! I've been taking daily Aleve, and between that and the antibiotics (imo), the Lyme couldn't hold the strong point in my knees. My asthma is also in remission!!!! That was the first symptom to go, and I haven't used my inhaler in over 7 months when I used to have to use it almost daily! My grades have also dramatically improved from middle school. I used to be averaging a B or B- in all my classes, I now average a 4.1 GPA! I hate to be repetitive with these exclamation marks, but I can never contain my excitement when talking about the progress that has been made!

And one last thing I forgot to mention, in October 2015 I came down with P.O.T.S. Instead of typing the long and confusing name for that acronym, I'll just explain how it effected me (key word effected, not effects). If I were to get up from a chair, or run for a short distance, my heart would start pounding out of my chest and my heart rate would reach >180. So we went to the heart doctor, and we solved that problem with a low dose of BP medicine (I think it's called INDERAL or something like that), and I am drinking about 100 ML of water per day with 1.5 tsp of salt. The problem got solved within 3 days of starting that treatment! I'm not sure what the Inderal does, but the salt helps me retain all the water I'm drinking which somehow fixes my heart. Imagine that, all it took was water.

So although it may have come across that I'm living in a crapshoot right now, I have made progress. And if I hadn't made any of this progress, I don't know if I would be here today. That is the one thing that keeps me fighting this terrible disease everyday.

Again, thanks for all the amazing responses I have received. I don't think I've witnessed such a wonderful community before. Maybe I'll take some of you up on that challenge to create a blog. It sounds like something I'd enjoy doing, and I would hopefully help others with Lyme while doing it.

Peace everybody

Mark

Post Edited By Moderator (Girlie) : 5/4/2016 7:05:11 PM (GMT-6)

Posted 5/5/2016 12:29 AM (GMT 0)
Mark, if you don't do the blog thing, at least make a journal and someday publish it.

I am glad you see the good from under the hurts of this lyme. We all need to focus on the good stuff and good days. I spent enough crying in the beginning and that certainly was not my personality.

Oh and I am super proud of you with the 4.1! You Rock!!

From another exclamation point user!!
Posted 5/5/2016 1:07 AM (GMT 0)
Necer149 - I'm sorry, but I had to edit your post. We don't post the names of LLMD's on the forum - we just use initials. We need to protect our precious LLMD's - from the threat of investigation.
Unfortunately....this does happen...and we don't want anymore to lose their license. (or go to court and pay hefty fees to retain a lawyer)
Posted 5/5/2016 11:56 AM (GMT 0)
I just want to say that you seem like an amazing kid, Mark. I have a 16 year old and he is a very articulate writer like you. He struggles with Lyme as well, I'm pretty sure, but has only been diagnosed with
Babesia. Having taught kids about your age writing for a few years, I wanted to say there aren't many high school underclassmen who are capable of expressing themselves as well as you do. Heck, there aren't many college freshmen who express themselves that well (I taught that age, as well).

What I'm trying to say, through this morning's brain fog--is you're a great writer. You have a gift! I hope you consider using your writing gift in some way. :)

Anyway, I hope you stick around.
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