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message 1: by Hannah (new)

Hannah (hannah-banana) | 85 comments Hiya, ladies!
Okay, so I hope this is okay lol...I've never done it before and I don't like to bring a lot of attention, but you know, I trust you all and want to keep you informed. But you know, the power of prayer can do wondrous things and I'm pretty sure you guys would help pray for me lol...*blush*

Anyway, I don't know how much any of you know about me lol. I'm 18, college freshman, think you know that much ; ) But I've got an abundance of medical problems too lol. No, I'm not dying and it could be worse, I acknowledge that, but it's not walk in the park either. I have Rheumatoid Arthritis, Fibromyalgia, chronic migraines, depression and some things that are still undiagnosed.

The process to diagnose my RA started almost 8 years ago, took between 3-4 years to diagnose it. Even though I've been diagnosed almost 5 years, we're still not to the place we want to be in. Or at least I'm not. I have a lot of pain, stiffness, achiness, and it's definitely starting to interfere with my everyday life. About a year and a half ago I had to have Carpal Tunnel Release surgery on both wrists due to the RA being treated incorrectly. Since then, we still haven't figured it out! Lol...

This past December I was diagnosed with Fibromyalgia. This was a welcome diagnosis because it explains some of the widespread pain in my body. However, since last August I've been having a lot of nerve problems. At first it was the occasional numbness in my hands. But over a couple months that turned into numbness multiple times per day and every single night even when I'm wearing my get-up at night (I have to wear compression gloves, braces, and heelbos on my elbows lol), which should not be happening.

I went back to the surgeon from my CTR surgeries a couple weeks ago. After my PCP and rheumy telling me that it was Carpal Tunnel back, she's not so quick to jump on that ship lol. She wanted my meds for the Fibro raised (got done yesterday finally), thyroid checked because she's pretty darn positive I'm going to test positive for hyperthyroid (which means she's nervous about diabetes since I've been untreated for so long), and she's sending me back to the same neuro for another nerve test and muscle biopsy which is next Wednesday.

Recently though (been 2 daysish now), I've started having some chest pain, tightness in my chest, heart racing, and difficulty breathing. To top it all off the nerves are making me twitch BIG TIME!! LOL! It is really funny, but not at the same time lol...my whole torso jumps or my arm, leg. It's not just my thumb or a muscle in my face anymore. I don't know it's probably not a big deal, but it sure is scary.

I am so overwhelmed at times. That's usually the only reason I like to tell people, so that they know what I'm going through. Then they can usually sense if something not right or whatever lol. It's been tricky being a freshman and not knowing anyone because they don't know, they don't understand. All my friends in high school (most of which have been my friend since elementary school and 2 since kindergarten!) have been with me for this entire journey. They've learned with me as I've learned about it. But these people, they don't know. I've told them, but they don't quite understand I guess. I mean I know I have to have my homework done before 7-8pm because I there's no chance of me holding my pen after that. By the evening, I don't have the energy to just go out or go to a party or whatever. I'm living in this constant pain and get blamed for being boring, no fun, never want to do anything. I'm sorry, but I'm not asking for any of this! Lol...who asks to be 18, taking 20 pills a day, eyedrops 3x/day, eye gel 3x/day, always having to worry about whether you'll be able to do what you want to, having to wake up every single morning and try to judge how you're feeling for the day. Waking up, working your way to sitting, then sitting on edge, slowly try to push yourself up, then get a feel for how your knees and ankles are going to treat you today, can you get across campus and up all the stairs to your classes? I don't know, I'm ranting a little bit, but I don't think people realize what it's like. RA affects every part of you literally. I've got it in my hands, wrists, elbows, shoudlers, neck, back, knees, ankles, and it's in my eyes, yes eyes!? Lol...it's scary to watch it progress because there's going to be a day when you just can't do it anymore. And that's a very scary thought to be thinking when you're only 18, I'd say lol.

So sorry to ramble :/ There was probably way too much in this that you didn't want to know, but I guess it let's you all into my life a bit more. I really enjoy talking to all of you, more than you know I think lol. You all let me into the group so openly, so thank you for that because I don't think I ever got to officially thank you.

Anyway, that's all for now!
Later, taters! And thanks again : )
Hannah


message 2: by Hannah (new)

Hannah (hannah-banana) | 85 comments Oh my goodness!! I had NO idea it was that long

O_O

I am so sorry *blush*


message 3: by Jillian (new)

Jillian (JillianHart) Big hugs, to you, Hannah. I had a car accident in my 20s and know what it's like to feel similiarly--in constant pain, at the mercy of doctors, just wanting a normal life. Big prayers are heading your way.


message 4: by Judy (new)

Judy Hannah- Have you seen if there are any clinical studies at the NIH in Bethesda, Maryland? My husband has a rare syndrome called Proteus Syndrome. Joseph Merrick (I hate this term but he was known as the Elephant Man) was the most serious case. Hubby is in constant pain. I am seeing it more on his face then I use to as some things are getting worse but he just becomes a stronger man of God. Anyways we found out what he had when he was 40 and then found about NIH. There is nothing that can be done for him so the study only helps to try to help in the future although just having a name for it has helped us. Maybe they have something more to help with RA.

Just a thought. Stay strong young lady :-)


message 5: by Hannah (new)

Hannah (hannah-banana) | 85 comments Thanks Jillian and Judy.

Sorry to hear about that Jillian, it is scary, isn't it?

And Judy, never have looked but then again I have no way of getting to Maryland! Lol...I'm up here in Vermont and New Hampshire, that's quite a haul for us. RA is constantly trying to be figured out for lack of a better term lol. We just haven't gotten many advances in figuring it out unfortauntely. I am so sorry about your husband, you guys are in my prayers, Judy.
Thanks again, ladies : )


message 6: by Judy (new)

Judy The NIH pays for the flights or gas and lodging.

They say that the patients are just guinea pigs but we have never been treated so well by any DR. Most have made a circus out of it, gathering all the other Drs to come look, etc.

I do hope you can find some relief.


message 7: by Heidi (new)

Heidi | 985 comments I will be praying for you Hannah. I am so sorry you have to go through this at such an early age :( May God blanket you in his comfort and love.


message 8: by Barbara (new)

Barbara | 518 comments Hannah, You will definitely be in my prayers. I have a friend at church who is going through almost exactly what you are, although she's much older, so I understand how discouraging it can be. What a strong person you are to endure all that and the adjustments of being a college freshman on top of it. Remember that the Lord has given you strength so far, and He will continue to do so.


message 9: by Jennifer (new)

Jennifer (texasaggieteacher) | 4102 comments Ah, Hannah. Reading your story makes me love you even more! It's scary enough going off to college your freshman year and not knowing anyone! I know what that's like, I've had to do it twice myself! But, adding to it the health problems, I can see why it's such a pain(no pun intended!) You will definitely be in my prayers! Praying that the Doctors are given wisdom and that your pain will be reduced. But, most importantly that God would be glorified in all that you say and do. Sometimes college kids can't see outside of themselves, so ignore the idiots and thank God for the friends He has given you!


message 10: by Hannah (new)

Hannah (hannah-banana) | 85 comments Heidi and Barbara: Thank you so much! I really appreciate it and can already feel the hand of God a little more from your words. : )

Jennifer! Oh my goodness! You got me oh so very teary eyed, lady. Lol...you are SO sweet seriously. I can't even belive you said that lol! I had no idea you felt that way *blush and giggle* Thank you so so much. You have no idea how much that means to me, Jen. *big huge hugs*

You guys have made me feel sooooo much better tonight. Wow, I just didn't realize that you cared this much. I am so touched. *goosebumps and tears* LOL! I am sooo touchy! Sheesh lol


message 11: by Paula-O (new)

Paula-O (kyflo130) | 2257 comments Hannah, it sounds like you are a brave young woman to put this out here and sometimes just talking with others can help, Prayers are a big help and this group is big on prayers for everyone, God says where two or more are gathered in my name and ask it will be answered, we are there for you and HE is there for you. You Must keep having faith and keep trying everything you hear about -I am praying for a miracle for you.....


message 12: by JanetTronstad (new)

JanetTronstad Author Tronstad | 2759 comments Mod
Hannah (hugs) -- I am so glad you shared. I can well imagine that most people your age would have no idea what you struggle with daily. You remind me of some of the letters I got with my four-book series, 'Sisterhood of the Dropped Stitches.' The books are all about girls who missed out on the normal things of life in high school because they had cancer -- the books pick up after they're cancer free, but the feelings of being out-of-step with others are still there. I'm praying you have a circle of good friends who 'get it'.


message 13: by Margaret (new)

Margaret Daley (margaretdaley) | 202 comments Hannah, you have my prayers. Hugs. I am amazed at what you are going through. We are here for you as is the Lord.


message 14: by Hannah (new)

Hannah (hannah-banana) | 85 comments Paula: Brave? Nah, I don't think so. I'm just barely trying to stay afloat most days lol...and as for putting this up here, I trust you all. you've been extremely kind, I can tell your faith is strong, you're the people I would want to be hanging out with honestly! Thank you so much for the kind words and yes, hopefully we'll be able to find a cure : ) As for me, I just pray for a little relief, you know? Lol...thanks Paula!

Janet: I have all four of those books! I read the first and absolutely adored it! Loved it, I should've told you that by now but I had forgotten all about it. Sorry :/ I should definitely pull those out and read them. I've got a few good friends. I'm lucky enough to have found a couple older girls through an organization, they're both 25 and have RA as well. They consider themselves my big sisters because they feel so protective of me *grinning huge* I love them to death! I can't wait for the day we get to meet in person! Some of my other closest friends I've met through blogging. Two of my very best friends are blogging friends. Ashley just turned 16 a month ago and Amber's 19, so they're my age. In some ways I think it's been easier to meet online. You can let your words do the talking and I know for me, that's easier. Usually I'm accused of not caring, but that's just because I'm a quiet person. I like to be the one who's there, but the words usually aren't that great. But if I were to write a letter, it'd be so good lol! I've known them both for almost a year now and feel like I've known them my entire life. They really are two of my very best friends lol...anyway sorry to ramble! Not sure how I got here, but thank you so much for the support, I really do appreciate it.

Margaret: Thanks, Margaret : ) Don't be amazed, I'm nothing special lol. Just a girl that complains too much, is too needy, and needs to learn to stop! Lol...I bother everyone way too much. But thanks for the kind words : )

(((big hugs to everyone)))


message 15: by Judy (new)

Judy You seem much older then only 18 with all your going through.

I have seen a child with RA and know how painful it is.

I do hope you can find relief.

Your strength through Christ will show others around you His love.

And you manage college courses through all this so you see you are brave and courageous after all :-)


message 16: by Hannah (new)

Hannah (hannah-banana) | 85 comments That is really interesting about the study, Judy. I don't think my mom would go for it though unfortunately. Thanks for the suggestion though, I might check into it.

*blush* Thank you, I think? I feel older than 18 lol...my body tells me I'm ohhh 80 or so ; ) And my aspirations are past college. I just want to be done so I can do what I really want to do.

Thank you so much for the kind words and your constant support : ) You are too sweet lol...

(((gentle hugs)))


message 17: by Lyn (new)

Lyn (lyncote) | 1644 comments Mod
Hi Hannah,
Except for the RA, you are suffering the same ailments as my daughter. It hurts me to watch her hurt. I will be praying that your doctors to have clarity when they diagnose you and that you will find friends who understand your pain. But most young kids don't have pain.
Hugs and hang in there!


message 18: by Hannah (new)

Hannah (hannah-banana) | 85 comments Thanks, Lyn. I'll definitely pray for your daughter too. If I could take everyone's suffering onto my self instead of them having to deal with it, I totally would. No one should have to deal with pain. It kills me to see it. I just wish I could take it for them instead...
(((gentle hugs for you)))


message 19: by Janet (last edited Feb 04, 2011 10:48AM) (new)

Janet Dean | 466 comments Hannah, I knew you had health issues but had no idea of the extent of your pain. Thanks for sharing what you're going through. You've given us the privilege of being able to pray specifically for your health. God bless you and keep you strong.

Hugs, Janet


message 20: by Patty (new)

Patty Hall | 211 comments Hannah, thank you for being so brave and sharing your story with us. It's so hard at your age to even have to deal with daily pain, much less explain it to people who don't understand. I'm praying for you, sweet girl, with the full assurance that God is using you to shine a light in your world through these difficulties.


message 21: by Hannah (new)

Hannah (hannah-banana) | 85 comments Janet: Lol...I didn't realize you knew : ) Thank you so much, though.

Patty: I really, really wouldn't call it brave! Lol...someone else said that I think. Nope, not really brave, just the truth. Thank you so much for the kind words! You all have made my day so much brighter. Thank you : )

(((weak hugs tonight)))


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