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Posted 4/28/2010 3:17 AM (GMT 0)
I am curious  how other people with this infection or post infection or whatever lead their lives.  Do you work?   do you tell people of your illness or try to hide it?   Do you ever have guilt issues about it?  I do, but  I shouldn't, guilt is just strong in me on everything.  I sometimes think my son is embarrased of me  I use wrong word, backward sentence, I do  not have a job etc etc.  In my robe a lot.  I was thinking of adding some new robes to my wardrobe, ya know what I mean?  I sleep a lot read alot, realy puts one to sleep, and have cut responsibilities to a minimum.. When i have a good day i go to walmart and out to dinner or ride my horse both activities have potential to knock me down for a few days but one must live a little.  Not that I am not grateful I am grateful I have a supportive family .A life w/o much responsiibility  but still eyes to read , and other wondeful things I can do.  I focus on that rather than what I used to do but can't now.  Just curious----- lisa.
Posted 4/28/2010 12:07 PM (GMT 0)
I have been working full time since getting sick in June 2009, with the exception of 4-5 weeks last summer after being hospitalized. I had expected a quick recovery, however this has not been my experience. I have missed a lot of time from work due to lab work, medical tests and doctor visits. I struggle to get through every work day and am overwhelmed with stress and anxiety. My life consists of basically two activities - Work and Rest. Every day around 2:00PM my brain just shuts down refusing to process any more.

I am currently on high dose abx and they are kicking my butt; I'm exhausted. I'm committed to pushing through this treatment in hopes that it will cure me. I'm not sure that I can continue much longer in my line of work because I no longer have the brain power for it.
It I don't recover soon, we will be forced to down size our home and cut our expenses drastically.

I usually try to be more positive, but I hate my life right now.

Praying for some relief from this debilitating disease.
Posted 4/28/2010 2:55 PM (GMT 0)
I feel like a free loader a lot of the times. All I have to do is take care of a house and that is all. I feel that I am depressed and have negatice thoughts the minute I open my eyes in the morning.-- Happiness walks on busy feet! I believe this is true. Other people are focused on other things and dont have time to focus on themselves as much. I look around me and think, "is this it??? Is this my life??". Yes, it is.-- - ----  My husband is supportive but I KNOW he gets sick of this. My talking about my health all the time. I am learning to shut up!!! Really, because no one wants to hear it all the time. I am beocoming an actress, I think.----- so, I do minimal things and that is all. I feel guilty because of the lack of contribution I bring.
Posted 4/28/2010 5:21 PM (GMT 0)
I do not work...I stay in Pj's most of the day and even run to the store in them, teenagers can get away with it...LOL!
No matter how I feel I make myself do something, doesnt matter if it takes all day, then it just takes all day. Yes I do have guilt, with everything. It can break me down somedays, where all I do is cry. But yesterday was a good day considering the situation were in. I was very lucky I got to accomplish what I did. Because 3 months ago I was doing nothing but laying on the couch.
So here is what I did yesterday:
Got up at 7:00 a.m. ,
took thyroid meds
Got son off to school
Ate 2 boiled eggs w/orange juice
took vitamins
took dogs outside and sat in sun with them
Washed 3 loads of laundry b4 11:30 a.m.
Ate turkey sandwich and some pickles
Messed around on computer inbetween laundry
12:30 Took a shower, to get ready to take daughter to OB appt.
Left house at 1:30 to drive to appt at 2:20
Got back to town stopped by my parents
Got home around 4:30
Sat on couch for an hour to talk to hubby
Finished laundry I started earlier that day
Made beef and bean burritos for dinner with leftover taco meat
I Ate steamed veggies and later had some pb w/toast
Sat on the couch some more, heck American Idol was on last night
Pretty much sat around the rest of the evening

But still with all I had accomplished which is amazing compared to 3 months ago
I still feel guilty I didnt get the dishes done, didnt give the long over due bath to my
dog, didnt dust my nasty tv that I keep looking thru the thick grime, or clean out my
car, or get my daughters old room finished instead of using it as a storage room.
So many things I worry about and feel guilty I dont get them done. But I feel if I make
a list like Earl does on "MY NAME IS EARL" Love that show! Anyway what I am trying to say
is. It doesnt matter what and when we get it done, as long as we feel we have accomplish
something whether it be BIG or small!
Keep up the hard work everyone and DON'T GIVE UP! I promise you it does get better!
Posted 4/28/2010 10:06 PM (GMT 0)
I basically go to school and rest when i come home. I study, but I end up falling asleep. I end up sleeping about 8pm or sometimes earlier, even on the weekends when I want to stay up late. I am sleeping on my couch because it is much softer than my bed. That is because my muscles and bone hurt to much, especially my neck. I never feel good, always feel sick. I am struggling because last year in the summer I was at the beach or doing some fun outdoor activity everyday, and now I feel I am unable to even go and tan for less than an hour. I was supposed to start IV antibiotics, but due to my G.I. issues with malabsorption and diarrhea, my doctor has put them off. This has someone affected my school, but suprisingly not my grades. I am unable to do after school activities or even go out anywhere. People are pushing me to do things, but even going to a store or going out for a very short walk kills my energy and makes me more achy than I already am, which knocks me out completely for more than a week. It is so bad, that I cry every morning because I have to go to school and I feel like crap.
Posted 4/29/2010 3:08 AM (GMT 0)
Oh my I never expected to find so many people who feel like me I thought I was an anomaly. It is hard and there is no use pretending it isn't at least here one doesn't have to sugar coat it.., someone said they were becoming an actess bingo me too, when I can, some times I don't fool anybody. I am at a loss for words, I can relate to every single post psygirl u break my heart, Have you tried lomotil to stop food from running right through? Super digestive enzymes every time you eat? I have a lot of trouble with my neck toop Harleyrider I am not only impressed by what you DID I am just flabergasted you can remember it all and list it. You are right we must never give up. Stutterbug i'm with ya I will not talk to anybody but my journal about my health unless I have to say i just can't do it today, I never go into detail or complain (except to my journal) I think my in-laws probably thinkI am a free loader but hubby never makes me feel that way. I did raise two kids pretty much alone as he was an airline pilot and i feel like oki did it I am retired I also intermittently worked part time. So I tell ,myself its ok lisa retire w/o all the fringe benefits (money can be tighter than a rubber band pull) Its the college that hurts us and hubby lost airline job maybe 3 years ago but is now driving truck home every night, patti I do not like noise either silence is golden for me. I wonder if it would help you if there was something you could think of that would get you excited and really want to do to give you something other than this stupid disease to think about. That's why we got horses I knew hoping to live to raise the kids was not enough and we were lucky enough to have a place (my dad's ) to put them. I don't take care of them except once in awhile > i do visit brush kiss and occasionally ride, you all ought to try riding on a day you can't feel your legs or your legs are as heavy as tree trunks I do not recommend it. Thank u all for responding i am glad I am not alone. And I will pray for all of us!! Oh and i don't worry about typos they made such a big deal about that silly crap in college I just don't care!!!
Posted 4/29/2010 7:57 AM (GMT 0)
Many days I sleep most all day because of being mostly unable to sleep at night. I can't work consistantly enough to have a regular job anymore, can't do housekeeping, can't cook (can't eat anything much, nor do I have energy to do anything), can't drive a car, etc. I watch tv, play computer games, make the message board/email group "rounds," and sometimes am able to be awake long enough during the day to get something constructive done (necessary phone calls, etc.). Oh yeah, and there is the pretending to be hungry so I can get my one meal down (Lyme-related gut dysmotility messes with apatite and causes problems with nausea, constipation, malabsorption, etc.), taking meds either through my feeding tube or via my PICC line, running the TPN (IV nutrition) and hydration, etc. I get out of the house for doctor appointments, lab draws (my PICC is misbehaving for blood draws...), pharmacy trips, and the occasional grocery store trip, but these outings exhaust me and I usually wind up taking a nap after getting home. I live in sweats because jeans are incompatible with the feeding tube when I sit down. Sometimes I'm able to go hang out with my Mom - we talk a lot. My Husband has been extremely patient and understanding about our very messy house...he works hard and tries to do a few housekeeping duties on weekends, but his energy is limited too because of his medical issues as well. It's a good week when the vacumming, lawn mowing and laundry all get done...

Do I feel guilty about this? Yes. But I also know my job right now is to get well so I can return to some of the things I used to be able to do (such as work, exercise, etc.).

Do I get down in the dumps sometimes? Yes, I get really tired of being stuck at home all the time. I get tired of being tired all the time. But I've also started seeing some improvements, both physically and mentally, and this is very encouraging. I also find hope in the stories posted here about those who have experienced improvement from treatment. And my Faith helps a lot, too, even though I can't go to church (I'm immune compromised, thus I tend to pick up every cold/flu going around when I go to church or go out & about regularly). I know my faith doesn't depend on being able to go to a specific building every week.

Take care,
Posted 4/29/2010 10:33 AM (GMT 0)
Razzle, I know how it is with the stomach issues. I have trouble with oral antibiotics or anything oral, so I am waiting for my IV antibiotics. But my doctor does not want to go ahead with them yet because of my stomach issues, which I had for many years before I was even exposed to the Lyme. I am also having problem with malabsorption, diarrhea and other motility issues, too fast motility. Ironically, a couple years ago I had my whole entire colon taken out due to having no motility, did well for 9 months (after finding out my food intolerance), then back in April/May of last year everything went bad. They said it is probably not Lyme related, since this happened before the initial exposure. That is why I am going to see a G.I. specialist who is going to put me in a hospital for a bunch of tests.

Roses, I know how you feel. That is sad about your situation with the college and your hubby losing his job. I am happy that you do have your horses. Animals are a wonderful thing to have. I have a cat, named Garfield, and even though he can be a pain sometimes, but it is his love and affection that keep me going.
I just want to wish everyone good luck with everything.
Maya
Posted 4/29/2010 12:22 PM (GMT 0)
psygirl6,

Are you sure it isn't Lyme interfering w/ your gut right now? Because it sure can do that... See http://thehumansideoflyme.net/viewarticle.php?aid=62 for how Lyme and coinfections can really mess with the gut...

Take care,
Posted 4/29/2010 2:31 PM (GMT 0)
Hi Lisa!

 I was just thinking about this yesterday! I have a HUGE problem with feeling worth wild, as I have a purpose In this world. I havent worked in 5 years. I miss that purpose of getting up and having a reason to get up! Now Ive found I push myself to do household tasks over and over again. I cant drive from vertigo. So i feel like im in jail. The heat keeps me indoors, So Im stuck in the walls of the house to find my purpose.

I get up at sunrise, Read Gods word, then do laundry, piddle and pick house up, tue. is iron clothes day, mon. is strip bed day.

 I miss being a part of the world!!!!!

 Ive been in deep prayer and thought on What I can do to become a tool for God in the world, just have a purpose. I know I will find something if I keep it up....

 This is tuff to talk about and my heart breaks reading others day as I can relate with them.

You Know, I suppose we need to look at things differently~ or atleast try to. If we get a new day, Try to do something different, anything! Mix it up!

Im going to make this promise to myself today!!! I promise to try and do something I dont do out of my comfort zone everyday! If I fail, atleast I know I tried! Isnt that the point....we all keep trying med, vitamins, so on....But lets just TRY something NEW, sheer life!!! Do something different!

 Thanks for the ttopic Lisa! You and All the others has inspired me to Live a life outside the walls!!! I pray so much someone or all will try to make this change for yourselfs also!

Hugs to all! xo

kim

Posted 4/29/2010 6:24 PM (GMT 0)
Today I have done this so far:

Tidied the bedroom
Washed dishes
Turned the wheel on the laundry continuum
Fed the dog
Did the barn chores
Took care of my greenhouse plants
Helped tail dock and castrate the lambs
Got ready for the llama shearing guy
Got ready for the sheep shearer
Weeded in the garden
Ate lunch and loafed about for an hour
Weeded in the garden
Wrote this.

Yet to do:
More gardening (it's a glorious day here)
Help shear the sheep
Put ear tags in the baby goats
Feed the animals
Walk the dog
Have dinner with my wonderful husband
Finish a dress I'm making for my granddaughter
Talk on the phone with my younger daughter
And watch something mind-numbing on the TV
oops didn't finish the laundry -- will do that tomorrow.

Eighteen months ago I was in bed 18 hours out of the day. A year ago I was on the couch for all but a couple hours. I couldn't dream of doing what I did today.
I tell you this not to taunt you but to let you know what sticking with your treatment can bring you. Your life! Not mine -- not everyone wants to work with sheep!

PattiB you break my heart. Don't give up! Is there someone who can fight for your rights to get treatment? Can you start a natural cure regimen? Your family doesn't want to see you decline this way. Find something in your life that you want to hold on to. There are people with incurable diseases that would love to be in your position of having an opportunity to fight for what's dear. I don't say this to chide you, just to encourage to grab your life back from this awful bacteria and fight for what is yours and what you could be. God help you.
Posted 4/29/2010 8:21 PM (GMT 0)
Razzle,
actually I only tested positive for Lyme back in Sept., which was traced back to possible July. Before, I never was exposed to any areas that were Lyme exposed. I was on medications for 10 years, where I never went outside or did any activity that exposed me. Plus, I always been tested for Lyme in the past because I live in Rhode Island, where in the summer ticks are bad, but, I never tested positive. Plus, it turns out I only tested positive for exposure, but not the actually Lyme, but this was back in September before the failed medications. Plus, I never even saw a rash or anything, and my doctor just gave me the test anyway.
The doctors may think the stomach issues are related to the total colectomy, but that was found not true. I always had stomach issues since I was a child, but it was mostly severe constipation. I had my colectomy, and found food intolerance caused everything. I did okay for a while, than in May of 2009, things went downhill. Also, the G.I. doctor in Boston and my Lyme doctor said that it was probably not lyme related, since this was an ongoing problem since well before the actual exposure. It was the tiredness and fatigue, and constant sore throats that bought on the tests. I also just recently found a lymph node in my neck, but they said it was just a lymph node, but it has gotten somewhat bigger, though. Thanks you all again for the great advice. I hope all are doing well.
Maya
Posted 4/30/2010 5:28 PM (GMT 0)
Hii all
I can't tell u how much I loved learning about your lives and knowing I am not alone and having someone to speak the truth to. do any of u have facebooks? mine is [email protected] I would be honored for u all to be my friends. Hope your day is goin ok I had the farrier out this morning and am now exhausted, will sleep. I hope u visit me. lisa
Posted 4/30/2010 5:28 PM (GMT 0)
Hii all
I can't tell u how much I loved learning about your lives and knowing I am not alone and having someone to speak the truth to. do any of u have facebooks? mine is [email protected] I would be honored for u all to be my friends. Hope your day is goin ok I had the farrier out this morning and am now exhausted, will sleep. I hope u visit me. lisa
Posted 5/3/2010 4:44 AM (GMT 0)
I don't know if I can help you at all, but I think in my experience, it's okay to feel the way you do!!! this disease really bites! it takes your life and I don't expect anyone feel happy about that. I certainly have bad days, and then really bad days, but I also delight in the few good ones or even moments when I am able to enjoy small pleasures even when it hurts to do so. I have decided to take this awefulness and do some things I always said I would do but didn't. Little hobbies. I love to take pictures and expose God's beauty... in pain, and beauty. Pictures don't take much energy and evoke emotions I cannot put words to. They tell a story in my heart that no one knows! I so feel your pain... so know myself and so many of the people here are with you.
I am at the Hansa center in Witchita, Kansas. Gary posted about this a few weeks ago and I have decided to give this a try after being on abx for over a year now. I will be posting my days here as Gary did in case you are interested. I am very excited to ge here and have spent my last dollar to come. I feel good about this place and hope to have good things to report.

Don't give up!
Cindy
Posted 5/5/2010 3:36 PM (GMT 0)
Is anybody going to chat today? I think I read there is one at 3 and other times too. do any of u have facebooks? I need some wise sick friends, i am sick of my well friends, as i do not let on I am sick, Im kinda kiddin I love mi friends but I'd love some of u guys to be on fb with me my email is [email protected]
Posted 5/5/2010 6:12 PM (GMT 0)
I tend to go to bed between 9pm-11pm, wake up a few times during the night to pee (I think it's my birth control pill YAZ which has a directic in it) I get out of bed by 8am on most days. I poop for a hour, running back and forth and sometimes it goes on for two hours. PAINFULL BM'S, BLOODY, SKIN AND DIARREAH, MUSH STOOL, stinks to high heaven!  I work a full time job, but it's so slow and seeing that there is only one other person in the office, I can basically sleep all day if I want. I take this as the biggest blessing! My boss is very understanding as well.  So, I take one nap a day and then at 5pm go work out, go home and cook something. No kids, part time mom of two chocolate labs. There were days I could barely climbs these stairs at work without being out of breath and having to sit down or sleep. Low blood pressure was another horrible thing for me. Constantly felt like I was going to pass out.

I make sure I take my coQ10 every day, this helps with my energy. I do shots of B12 in the leg or arm. I take a liquid vitamin, probiotic pearls, and Diflucan for yeast.

The last four years it's been by GOD's Grace, I was able to move, walk and function with my ulcertive colitis. I felt days where I thought I was dying, going to die, or maybe I would be better off. I hate to say that, but it was the truth.  I've been to 16 doctors in 5 years and spent over $30,000 in treatments. Finally in November I was tested for Lyme's and it came out positive. I just wish I was test 5 years ago! I've consulted with doctors in and out of my state spending thousands and getting nowhere.

I kept saying to the doctors I don't believe I have ulcertive coiltis, something is causing it. No one listened, until my last doc, after a year of treatment with him, he finally tested me for Lyme's.

I've been on a 5 months of hard  antibiotics treatment I feel. I stopped meds on vacation last week and wow my stool and gut are better. I will give it a few more days see if I continue to see improvement, if not I'll head back on them. I'm still on my UC meds though.  

Don't give up. Stay prayful. Stay hopeful. Stay faithful. Cry, cry, cry, let it out, that's healing too. When I couldn't even talk I knew GOD was still hearing my prayers in my mind. That is how sick I was. I couldn't even open my mouth to say help me or thank you to him. I just laid in a ball and cried, why me I'd ask. But now, I'm coming out of it. Antibiotics really have helped me.

 

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