arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
It's been a while since I've done a post about me. I've been doing my best to get on here a few times a day and respond to a few posts that I feel I can help with, but for some reason I've been quiet about myself. Maybe because I feel like there's not much to say or that I don't need help so there's no reason to post.
Anyway, I'm sitting here trying to pass some time online and it just felt like a veil lifted and the reality of what's going on with me right now hit me. I've had a really rough time since the beginning of January (to read about all that, go to this post - Jan. update on me) and it's just been such a roller coaster ride that when I actually sit down and let it all sink in, it's almost too much to handle.
I'm someone who always tries to be optimistic, hopeful, and not let on that I'm feeling down even if I am but it gets to a point where you just can't keep up the facade anymore (as I'm sure you all know all too well).
This feeling weighed down and overwhelmed probably has something to do with my overdoing things this summer. It always happens that I get about halfway through the summer (well, my summer jobs at least which last for 6 weeks - July to mid-August) and just crash and have a bit of a breakdown. I guess I've done better this summer because I'm 2/3 of the way through it instead of halfway through but I have more going on and can't really take a break from things so I just have to push through the last two weeks.
I started on Babesia treatment (again - this would be the...fifth time I think) about three weeks ago with Mepron (I swear, that stuff just tastes grosser and grosser) and liquid Zithromax. They're causing more stomach problems and I really can't afford to have more stomach problems. I've taken about 5 days off here and there to give my stomach a rest and I just know I won't be able to stick it out for another 3 weeks of it.
I see my LLMD on Thursday and we'll decide the next step then. Since I'm more stable as far as my weight goes (I lost about 30 lbs. from Jan. to April due to gastroparesis and not being able to eat and I'm still dealing with it, but I've gained back most of the weight thankfully and can eat enough (usually) to keep the weight stable) we're going at the Lyme again after having taken a break for the six months while my stomach was getting straightened out.
So the next thing we're going to do is put me back on IV Primaxin since it was starting to make a real difference when I crashed and had to stop in January. I'm hopeful that it really will make a difference, but the schedule for it (every 8 hours, about a 2 hour infusion each time) is hard for me to handle and disrupts my sleep schedule. I can handle that, I managed okay when I was on it last time and had it figured out pretty well and slept through my morning infusion.
The Primaxin also makes me really nauseous but Zofran would more or less take care of that. I'm worried it will make it even harder to eat but I'll deal with that, too.
It's nothing in particular that's bringing me down now, just the weight of everything. The weight of the past 8 1/2 years of being on and off treatment - it's been so long and I'm so tired of it all. I just want to sleep and wake up feeling rested. I want to be able to finish college and actually go on to do something instead of working part-time and not having the energy to do anything else.
Sorry for whining, it's just been a rough time for me lately and I tend to push reality aside a bit so that eventually it just forces itself on me. And sorry this is so long, I just let myself type and whatever came out came out. I guess if I did posts about me more often they wouldn't end up being so long.
I hope some of you made it through the whole thing or skimmed it at least. Thanks for listening (or reading would be more accurate, I guess). I don't really need advice of what to do, just support and encouragement, I guess. And maybe I need a good cry and a nap (unfortunately I'm house/babysitting for the next week and can't really rest like I'm used to).
Good to hear from you. My brain is working on a half of a piston. But, I did catch the part about feeling blue and knowing that over doing it may be the cause.
It is kind of funny how over doing it can just be trying to walk to the mailbox a few feet away when it comes to lyme disease. It is frustrating.
Mostly just wanted to stop in and let you know it is good to hear from you. We can only hope that we are on the list of the people that do get our health back eventually. It does happen. I have seen it. Hang in there.
Posts: 89 | From AZ | Registered: Mar 2006
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posted
Hang in there Annie...sorry tohear that you are blue.... Please try to rest even while babysitting/house sitting...the tots could nap also?..
Please know I often feel that surge of reality when I realize how long I have been sick and how slowly I get things done compared to others..very frustrating..but just remember how much more concoius we are now in our every day life and that that is a gift. Albeit a painful one at times. WE do appreciated the little moments now, which many take for granted...
keep your head up Annie!
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there Annie dear one,
My goodness...no one can feel great ALL of the time, not even a wonderful gal like you!
Sometimes, when I try to supress my true feelings for too long, the crash of reality is harder to bear.
Yes, it is good to have a dear friend or mentor that will allow you to speak your heart while not having to put on the happy face that is usually permanenty super-glued to our real faces.
We WANT to be happy, we WANT to be optimistic,,,and for the most part we truly are! But everyone has those blue days, and I think the best way to handle them is just to let them be what they are...feel what you feel...and it will pass once you have been heard and validated usually.
I know it has been a long long journey for you, ripe with ups and downs...and you have always been exemplary with your positive outlook and pro-active endeavors. I personally applaud you and admire you for making the most of a really sucky situation. You inspire me to want to be a better person, and that, my dear is a precious gift.
But, you ARE allowed to not be the best, the happiest, the most optimistic, the whatever...all of the time.
To quote a friend of mine...sometimes, it is ok to be average. To be human. To feel happiness and sadness.
So, my wish for you today is to just let it all out, have a good cry, and don't worry about feeling on top of the world...
until that time comes rolling back around that you automatically want to start climbing again, OK?
We DO love you Miss Annie, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Good luck Annie..Hope things are soon 100% better..And you can not always be strong..WE all need a cry or whine once in awhile.. So do it..And realize that you are one stong gal but this is a rough road to navigate..
Hugs..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
Annie, glad you posted about yourself, and just let your fingers fly until you were done with all the things bottled up inside yourself.
We all get this way; you have us here 24/7 remember that always.
Take small, baby steps ... don't look at the entire picture; just a few puzzle pieces ok. Accomplish that, and then move ahead or it is to overwhelming to deal with ok.
Cry, whine, and BE GOOD TO YOURSELF always. Listen to your gut instinct; they are never wrong I have found in my 57 years on earth. Bettyg
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
HI Annie,
I was wondering recently where you'd gone as you didn't seem to post anymore, or if you did, I've missed your posts.
Sorry things have been so rough, I hope that you'll be able to tolerate the meds.
What were your stomach problems, (I don't know the symptoms of gastroparesis), is/was it pain, cramping, diarrhea? Or different?
I have had trouble on and off since last Sept, which means my treatment since then has been a bit patchy, and once again I've had most of the last 3 months off.
I then recently found out I have Klebsiella overgrowth and am now treating that - I'm a week into the 2 weeks treatment with Septra DS, although I'm still getting vague stomach aches randomly in abdomen. (No candida on the stool test, which I was amazed about).
8.5 years is a long time to struggle on with treatment, but you've got to keep on keeping on at it. You're not alone and we're all here for you, and have missed your presence.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Carol B
Unregistered
posted
Hey Annie- didn't you just have a birthday party? on the 4th of July ? That's what inspired me to have a surprise birthday party for myself in August !
Here's something silly-When Lymetoo posted for your birthday as arg82- I thought she was giving your age and spelled "age" wrong, Somehow I don't think you are nearly that old-even if you feel like it sometimes.
I thought Lymenet was the one place we didn't have to keep our game face on all the time. As for myself- I can feel ready to throw in the towel one minute and the next I'm okay. When you're down you're down and when you're up you're up.
Anyway, to cheer you up, I wanted to personally invite you to my birthday party-it's a surprise, so I can't tell anyone when it is yet. But I have dropped a couple clues on Lymetoo's birthday thread.
To thine own self be true, Love, Carol
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So sorry you feel emotionally drained. I have been there many times myself. It's tough to be sick for so long. I have just started my treatment but have been sick for many years too.
At least part of our battle is one....we have a dx and we are on our way to recovering.
I gave up college too. Iwas supposed to go the year I started to feel ill. Every time I make up my mind to go I crash again.
We will get there. My daughter will start kindergarten in 2 years. My goal is to be better by then and start school full time. We will both get better and be able to school.
Let it out more often. We need to or we will go crazy.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you so much to all of you who posted. I had forgotten how great and supportive everyone on here can be. And I guess I'd forgotten that I need the same kind of support I'm trying to give to others - sometimes it seems easy to forget that and just try to be as helpful as possible.
Melanie, you put a big smile on my face by telling me I inspire you. Although I don't intentially try to be inspirational, it's nice to know that I make a positive difference in people's lives and offer some kind of hope or happiness. And your friend's quote is so accurate and meaningful to me right now. I seem to easily get caught up in trying to be perfect and I forget about being human.
DLL, my symptoms of gastroparesis (or GP for short) are mainly nausea, abdominal pain (cramping or shooting pains), and feeling full after only a small amount of food. All the symptoms are made worse by eating and when I eat very much I also get severe reflux (not heartburn, just reflux all the way to my throat and/or mouth). I'm on medication for it now to help my stomach empty faster and easier but I still am struggling with the chronic nausea and just feeling sick a lot of the time.
Carol, yep, I just had a birthday (on July 4th) - no big party but I celebrated with my family at home (actually didn't leave the house at all that day). And I'm not 82, lol. That's actually the year I was born which would only make me 24 which seems kind of old to me - officially my mid-twenties!
kitkat, don't give up on school, you can (and I'm sure you will) finish. It will just be on a different schedule that originally planned. I am entering my 7th year of college and hope to graduate in May 2007 but there's no way to solidly plan on that.
I figure it will take as long as it takes and right now I'm just happy to be able to handle one class at a time. Online classes can be great, especially if they're more self-paced rather than based on deadlines. I've been doing some of my classes online (not through my school but they'll transfer) and it's a good addition to my in-person classes.
Well, I'm feeling a bit better this evening than I was earlier. I didn't get a nap or anything but I got out of the house for a little while (took one of the kids I'm babysitting to the mall) and it was nice to just get out. And it was a really nice (although really hot) day so I sat on the enclosed porch for a while and read which was nice. I'm actually still out on the porch with my laptop with wireless internet and I'm just enjoying the fresh air.
Hopefully tomorrow will be a better day overall. Maybe I'll try to get up early enough to go to church and be with friends there (I haven't made it to any summer services this summer and tomorrow's service is very musical so I'd probably enjoy it). I'd just have to make sure the kids would be okay with me doing that or willing to come along (which I doubt).
I will try to be better at keeping you all updated on how I'm doing. I don't want anyone worrying about me and I could use the extra support as I try to figure things out and make it through more treatment.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, Miss Annie.
Well, I see you popping a little helpful post in here and there, but leaving few clues about yer own self.
So I figgered as much!!
I AM glad to hear your tummy has been a bit better, since for a while there I recollect you were on a diet of essentially water 'n crackers, which had me pretty worried you were gonna shrivel up like a twig!
We all think of you as so resilient that it's hard to remember you're just a young thang!! You've been through so much. If I were in your shoes, I'd probably be whining 24/7, yet you so rarely do.
Move over. I'm crawlin in your bed again for a cyber-snuggle. You're still young enough I can do that. A privilege of my advanced age, y'know.
Hang in there, baby.
Love,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Annie, I'm so sorry things aren't going well for you. I know it's been a LONG haul and that you have worked hard at getting well!
I do hope with the right amount of rest and attention to your needs, that you will improve and improve, until you're WELL!
Maybe you could try clindamycin/quinine [and art] for the babs next time?? I think it works great! and no nasty taste!!
Hang in there, OK???? Vent anytime you want! We're right here with you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Annie, don't feel like the lone stranger. I usually manage to stay quite cheerful on a cocktail of optimism and denial, but for some reason last week I woke up and saw the years of battling this disease in the hard glare of reality. Serious bummer. Somehow telling myself that we've (me and the hubby) done amazingly well didn't quite overcome the feeling of terrible losses.
But, like the urge to clean house, if you lie down quietly and think of other things, it passes. Reality is an interesting place to visit, but there's no call to actually live there. Remember what Einstein said (and he should know): ``Reality is merely an illusion, although a very persistent one.''
Best of luck to you.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hi Annie I hope you get a breakthrough soon its hard on anyones constitution Babs lyme coinfections bite. I hope God will give you strength to get through all this and I hope you keep your weight up and can continue to get better.
Hang on ! I knows its hard real hard it takes a toll on you spiritualy, mentaly and physicaly
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks so much for all the support! It makes me feel better to know you're all still here for me and I can vent when I need to.
I think a big part of me feeling blue is that I'm house/babysitting until Sunday and I just feel disconnected from my "normal" life and I'm crashing pretty badly from not getting enough rest. I'm trying to get as much rest as possible but it's difficult when I have to be awake and responsible for two kids (and a dog - I'm not a dog person).
But hopefully I'll make it through the week until Sunday (I've been here since Thursday afternoon so I'm about halfway through). Then I'll crash big time but at least I'll be in my own bed with my a/c and TV to keep me comfortable and entertained.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Annie,
My son and I feel much more depressed on Malarone(me) and he with the Mepron. Then we feel better than pre-bab treatment on our breaks.
Could be the babs treatment is affecting you.
I am lowering son's dose. It is always a balencing act with trying to get well but not putting oneself in overly miserable state. (so subjective, huh?)
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Healing thoughts that wish you 'in the pink' of health instead of that 'blue glum',,,I remain--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the continued support and understanding. It helps a lot.
I had an appointment with my LLMD on Thursday and we decided to stop the Mepron and Zithro since it was fairly rough on my stomach and not showing improvement.
So I'll take a month off, try to get my stomach in the best shape possible (not sure what that is right now, but I'll do my best to find out!) and then in a month, when I get back from 2 weeks on vacation in Maine with my family, I'll go back on IV Primaxin since I seemed to be improving on it when we had to stop due to a huge overall (and especially GI) crash which included a big dive in my WBC count.
I'll be taking a supplement to keep my WBC count up and my LLMD will be following me very closely with labs and seeing me fairly frequently (not sure how frequently, but last time I was on IVs I had to see someone every two weeks but was able to see my PCP every four weeks so I only had to see my LLMD every four weeks).
I'm very worn out from this house/babysitting but I'm down to about the last 24 hours of it so I'm in the homestretch! I plan to crash tomorrow and spend all my free time during the next two weeks resting so I'll hopefully be feeling okay when I go to Maine with my family.
I'll try to keep you all updated on how things are going with me. I expect to be feeling pretty yucky when I start the Primaxin so I may be mia for a while in about a month (assuming my insurance agrees to cover it by then - we have a month to get it set up so it should be okay by then...*knock on wood*) but, on the other hand, maybe I'll be on more since I'll probably be resting in bed more (at least I hope I'll have time to rest in bed). I'll try to get on periodically to keep you up to date on things.
Thanks again for all the support and being there for me!! I'm sure I'll start feeling better and come out of this rut when I get home to my own, wonderful bed and can REST with no kids to take care of (and no dog, either). Counting down the hours (as I think the kids are as well).
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![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Eek!]](eek.gif)
Somehow I don't think you are nearly that old-even if you feel like it sometimes.![[Frown]](frown.gif)
As for myself- I can feel ready to throw in the towel one minute and the next I'm okay. When you're down you're down and when you're up you're up.![[Smile]](smile.gif)
Although I don't intentially try to be inspirational, it's nice to know that I make a positive difference in people's lives and offer some kind of hope or happiness. And your friend's quote is so accurate and meaningful to me right now. I seem to easily get caught up in trying to be perfect and I forget about being human.![[dizzy]](graemlins/dizzy.gif)
so I may be mia for a while in about a month (assuming my insurance agrees to cover it by then - we have a month to get it set up so it should be okay by then...*knock on wood*) but, on the other hand, maybe I'll be on more since I'll probably be resting in bed more (at least I hope I'll have time to rest in bed). I'll try to get on periodically to keep you up to date on things.![[Big Grin]](biggrin.gif)
Counting down the hours (as I think the kids are as well).
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