New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 6/18/2007 1:07 PM (GMT -7)   
I try so hard not to do this. To get so down that I feel I can't get up. But I am so tired, so frustrated. just completely done with being sick. I have been sick off and on for several years, but this last year has been sheer hell.

I had surgery in September of 2006 for what they thought was an inflamed appendix. It turns out that I had very enlarged mesenteric (abdominal) lymph nodes all throughout my abdomen. I had fevers for months and months, ached, felt miserable, nauseated, just horrible, and then I had surgery.

Was supposed to be in and out the same night or next day, but they found bleeding inside my abdomen and even though it was a small amount, they did exploratory surgery to determine the cause. Which of course, they weren't able to. I was left with an enormous incision and months of healing. The wound didn't heal properly, had to heal without stitches from the inside out. Still had fever for a month or two. And then finally my ANA came back raised. Was sent to a rheumy who diagnosed UTCD with probably lupus.

7 months after the surgery, I develop colostridium difficile or C. Diff after taking a round of Clindamycin for an abscessed wisdom tooth.

I have been fighting c. diff ever since. It just wont leave. Now I am being scheduled for a colonoscopy and I am scared to death. Every procedure seems to go wrong for me. They tell me it is easy, but I am still afraid.

I am tired, hurting, exhausted. I get maybe one good day in 10. I feel like screaming, breaking glass, and killing this stupid illness. One or the other, maybe I could handle, but both? Then throw in migraines with vertigo, migraines without vertigo and I am pretty much fighting ALL the time.

I cannot take the Lupus meds until my stomach is healed, which doesn't seem to be any time soon.

I am tired of being the sick one. The one with "problems" , the anxious one. I am tired of being fragile and depressed. I am tired of looking at the rest of my family go about their lives. I am tired of seeing my mom and sister go to work and live productive lives. I wish the best for all of my family, I truly do, but it hurts to see them so "normal". I am tired of being on the outside looking in. Or in my case really I am on the inside staring out. I cant seem to get there. The land where everyone else is. It seems a different plane. I can hear them, I can see them, but I am not allowed access. Sometimes I wonder, am I doing this to myself? Am I thinking myself sick? Is there something wrong with the way I think or feel that allows me to be the sick one and everyone else well?

I have even thought about auto-immune disease. My body is fighting itself. I have guilt and was made to feel guilty for many things in my life. Do I hate myself? I know this sounds crazy all and I'm sorry. It is just something that goes through my mind when I am so down like this. I wonder if I am killing myself slowly, using the auto immune disease as a weapon.

Last night I was feeling pretty good. After 4 days of migraine, it was gone. What did I do? I scrubbed and cleaned. Happily, but til exhaustion. My arms were weary. Then I didnt sleep well because of my stomach. So.. add up no sleep, migraine postdrome, and over-doing it. It all equals to one exhausted hurting worried crying girl who doesn't have the strength to keep her depression away.

I know there is nothing I can do but wait, pray, think healthy thoughts, but right now I can only see darkness.

Thank you for letting me vent. I hope I did not make anyones day miserable by my post.

Darlene
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/18/2007 1:14 PM (GMT -7)   
Darlene,

I can relate to everything you just said!! I often find myself thinking the same things and not knowing if its me and if I just had a different mindset about everything. I'm so sorry that all of it is hitting you right now. It sucks to have to deal with all of this and watch everyone else enjoy their lives. (((Darlene)))... I don't have any words of wisdom but I sure hope someone else does so I can hear them too but please know that you have support here from people who REALLY know how you feel.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/18/2007 1:33 PM (GMT -7)   
Oh Darlene, I'm sorry you've been through so much in the past year. I read an article about c-diff a little while ago and it sounds awful.

You said so well, everything I feel when this disease gets me down. I felt like you were describing my own battle. When talked about feeling good and then happily overdoing it - I do that all the time and then pay for it. I found myself angry this weekend that all around me, people were going on with their lives and the activities that they enjoyed, while I sat on the sidelines. I had my very own pity party.

about the thinking yourself sick - I have thought that one a lot and also have tried to convince myself that I can think myself well, only to find out that neither one is true. I sometimes think if I just had the right frame of mind and fought hard enough, I could go back to being normal, active, and healthy, but sadly it;s not true. It's so hard because this disease is so unpredictable.

I'm sending you lots of hugs. You don't have to worry about bringing anyone down - it helps us all to share how we feel about this illness and I'm sure you spoke for so many of us here. It's so important to have a place like this where everyone understands.

Hang in there and you'll be in my thoughts and prayers. Take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/18/2007 5:33 PM (GMT -7)   
Darlene, I'm sending warm healing hugs too. I'm sorry you are going through this right now and understand what it's like to finally be doing better, and then have something come along to knock you down again. It's almost as if something is telling us not to get too cocky about feeling good. I don't have much time to post right now but I wanted you to know that I understand - in fact I understand better than you can imagine.

I'm glad you're here and I'm glad you took the time to let it all out. You didn't make anyone feel miserable, but quite the opposite. We all need to get outside of ourselves from time to time and have compassion for others. This disease makes it so easy to get totally wrapped up in our own problems and this forum helps keep me grounded.

I hope tomorrow is a better day for you. And vent whenever you want! Believe me, I'm on the precipice of a huge vent myself. I know you and the other folks will be hear to listen.

I'll be thinking of you until we hear from you again,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/18/2007 10:17 PM (GMT -7)   
Darlene,

Don't ever think that when you pour your heart out that you are making others miserable. You are doing what you need to do today to help your self--kind of like taking meds. And anyway, it gives us a chance to help someone. That's what this forum is about, right? Helping each other...with information, moral support, encouragement, you name it!

You expressed so perfectly what I'd bet so many of us feel. You have a way with words. Do you write or journal? If not, you should! And it might even help you feel better.

I'm really sorry you've got the c-diff going on. I have heard and read that can be so difficult to get under control and get rid of. It's a major problem anymore. I can't imagine what you have gone through with your surgeries.

I'm one of the several here who have migraines so you have my sympathies with those as well. Are you able to take anything for them with your stomach problems? An abortive? I take verapamil for mine which has been the first thing that has ever helped. It has reduced the frequency and intensity although I still get a doozy about once or twice a week. But that's better than it was. I hope you are able to find something that works for you. When you get them that last for days at a time, they just drain the life out of you.

I hope things turn around for you soon. Keep posting--when is your colonoscopy? Will this be your first one?
Keep us up to date.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/19/2007 1:51 AM (GMT -7)   
Hi Darlene, sending you huge hugs and prayers for your upcoming test. You know in every 12 step program there is a saying. If you stick around long enough someone will tell your story. Well I am sure you have told not just mine but most of our stories. This disease doesn't care if you are rich or poor good life or bad, a health nut or a junkie. If it wants ya it will get ya. There is nothing you could do or think that will change that. To me it feels like I stand at the edge of a cliff 90% of the time. 5 % I climb down the hill and feel good for awhile and 5 % I get pushed over the edge. There are a lot of things in my life that I have done that I am not proud of. I think that is true for most of us so don't think you have more to feel guilty about than anyone else. I mean put it in perspective. Look at all the serial killers in prison that don't have lupus! devil . So wipe that one out of your mind.
As for your tests being a problem. I actually can see that being true. Our bodies are always in a fighting mode. We never have a chance to just be healthy. That has to make everything we do harder. We just don't have a reserve. Like the old saying goes. "this may not be hell but you sure can see it from here" That's how I feel half of the time. Anyway the only reason I'm saying this stuff is to assure you that what you are feeling is what we all feel somtimes. So take the self talk and dump is in the nearest trash can. You did not do anything wrong to get this desease and there is nothing you can do to get rid of it. No matter how much you try to convince yourself otherwise. I'm not saying that there isn't room for a little power of possitive thinking but along with that is a reality that you are sick and possitive thinking is that not all days will be as good or bad as others.
Hang in there sweetie
love
carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Post Edited (okie) : 6/19/2007 5:45:04 AM (GMT-6)


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 6/19/2007 3:23 AM (GMT -7)   
(((DARLENE)))
 
I am so sorry you are hurting so badly!! Please don't give up, keep your spirits up, no matter how hard it is to do so!!! Vent away anytime you need to!!!
 
God Bless,
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 6/19/2007 5:21 AM (GMT -7)   
Hmmm, I've been to a few of these pity parties ;-)
Darlene, I think most, if not all, people can relate to your story.
Not feeling "normal" is tough.
What we need to do is ACCEPT who we are right now.
I do the same thing..I will bash myself b/c I cannot function like the others in my life. I do work full time (which is so tough) but I cannot do so many other things. But ya know what, that's OK! We are who we are and you cannot heal if you don't accept your situation.
By the way, a colonoscopy is MUCH Easier than you think.
My friends Mom was diagnosed with colon, liver and kindey cancer one yr ago and was given 3 months to live.
She is 75 yrs old. She has had surgery, radiation and chemo and through it all she still works and goes on vacation. SHE AMAZED ME!
I ask her how she keeps her spirits up, she replies" I cannot change it so why not embrace it"
Her attitude has helped her heal. Her colon and kidney cancer is gone and the tumor in her liver died and she will get it removed in July. Her dr's feel she will make a full remission recovery
A huge key to healing (and I need to take my own advice) is to accept and love who you are TODAY.

monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 6/19/2007 9:23 AM (GMT -7)   
I want to thank each and every one of you that responded to my post. What a gift it is to be able to feel compassion and love from such wonderful people miles and miles away. I am truly grateful that I found this wonderful Internet home.

You all put it so well. And without those words of comfort and acknowledgment this disease would be so much harder. I cannot imagine the isolated loneliness people must have felt prior to the Internet.

I am still tired, still aching, but I slept. Thank God I slept! Sleep is so important in being able to handle anything emotionally.

Peacesoul I am still thinking about your grandmother! I want to be like that! I want to embrace me, embrace now... but I feel I do not know how!

I am going to say those words over and over throughout my day. "I cannot change it so why not embrace it" Until my slow little pea brain figures out exactly what that means and how I can apply it in my life yeah

How many of you keep a journal? Sometimes I begin when I am in a long drawn out mild flare. The depression of the flares and illness seem to be worse then because I have brain power to actually think about my predicament. Then if it becomes very bad, I feel too ill even to write and it falls by the wayside. When I am feeling well, to even look at my journal reminds me of feeling sick. So I hide it in the back of the bookshelf behind other books in hopes that I will NEVER need it again.

Perhaps I need to find some way to meld all three stages together (well, mild disease, very very sick) , to make it MY life instead of an illness that is happening to me that is taking over my life and holding it hostage. Maybe that would be a start to.. "If I cannot change it, why not embrace it. "

You know hippi, I was thinking. When we are on the sidelines and having a little pity party, we can imagine our 'sisters (and brothers) in suffering' right there with us. I mean at one time or another, there has to be at least two of us feeling the exact same way. Knowing that we are joined in our suffering might help the isolated feeling.

okie I LAUGHED out loud to think of serial killers in prison so remorseful that they aquire lupus. If it were a perfect world....

emmi, I haven't tried Verapamil because they are concerned that my blood pressure is too low to begin with. It hovers in the 90-116/65-80 range. Did you have high blood pressure before beginning treatment with it? Like Hippimom I am going to be taking amitryptaline. I was supposed to start taking it but this whole cdiff business started. My physician told me that if there were only a handful of medications he could take with him into isolation (if he had to be on an island) amitryptaline woul be one of them because of So many conditions it helps with. who knows.



Thank you again, each one of you, for listening to my cries and drying my tears. You made me smile, laugh and cry with your posts and it was JUST what I needed.

With Love,
Darlene
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 6/19/2007 9:34 AM (GMT -7)   
Darlene...I keep a journal. I've done this for over 20 yrs. It helps me get through the day.
And you are right when you said "how lonely ppl must have felt before the net"
Many lives have been saved because of 21 centurty comminucations.

Life is what we make it, and if the Universe hands us crap, well heck, add some spice and make it spicey crap ;-)

Good luck and keep us posted

Jen

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/19/2007 10:43 PM (GMT -7)   
Howdy Darlene,

Glad you got some sleep. You are so so right about getting sleep and getting good sleep. It makes all the differrence in the world.

I keep a journal. I have off and on for several years pre diagnosis and since diagnosis I have been keeping a "medical journal" that has morphed into my medical, philosophical, venting, musings, write whatever I feel like writing at the moment journal. I try to get to it at least every other day, but if I'm having a bad time (read flare) it may go by the wayside until I have the enrgy. And then look out!

In regard to the verapamil, I too have low blood pressure. At times they have me standing and doing tricks to get it to go up! For that reason when the neuro first mentioned it, I reminded him of my BP and we mutually decided to try something else. That didn't work. I asked him about giving the verapamil a trial run, monitoring my BP often. He agreed and I have been fine. Go figure.

xoxo emmie
PS you will figure out your own way to come to terms with all of these changes. Little by little it happens. You go forward, you step back. You go forward, you step back. And so on. Just like the rest of life. :-)
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/19/2007 11:00 PM (GMT -7)   
Well you guys have brought up the great journaling question. I've had trouble journaling because years ago someone (stepson????) stole my journal. Since then I've been reticent to write down something that someone else might read. But I realize now, after reading this thread, that my fear has been keeping me from tending to myself. So I think I'll continue with my journaling. And who says I have to write it. I may type in on my computer.

Darlene, I agree that the isolation is perhaps the worse thing that comes from having a chronic illness. I've become isolated to the point of being nearly anti-social, but through my friends here I'm learning to be more open and so many of my needs are being met by the terrific people here.

Thanks for a terrific post.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/20/2007 6:23 AM (GMT -7)   
Pat, That was a rotten thing your stepson did. I'm sorry that has kept you from journaling since you obviously got a lot out of it. I really want to start journaling as well. I have heard it is wonderful self therapy since getting it out is getting it out no matter if its on a piece of paper or computer. That is part of what makes this place so great too. We are getting it out :-)

Darlene, Thanks for the idea about journaling. I am a little apprehensive also about keeping it and the risk for people to find. Thinking about the computer idea Pat had and maybe password protecting.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/20/2007 9:05 PM (GMT -7)   
Pat, Des and all,

in the past my journaling was done long hand in pretty journals. that hurts my hands too much now. most daays its much easier to use the keyboard so it's computer journal for me. that's also where i keep all my questions and symptoms I want to remember for my docs. I use a different color ink for those so I can find them when it's time to go to the dr. I print them and take them with me. I write their answers and other visit notes after i'm home (or in a day or two). These are the adaptive things I've learned to do since my former brain that I used to be able to always count on, no longer functions reliably! It's also good to use the different color ink for the medical info so I don't accidentally let the rheumie know that I wanted to choke my husband the day before yesterday.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 6/21/2007 9:21 AM (GMT -7)   
Wow, some great tips on keeping the journal emmi, thanks!

I have kept journals off and on in my life like i said before. nothing specific really to illness though. More about my emotional pain. Sometimes I go back and read them and they break my heart for myself lol!

But I agree, writing is too much for my arms right now. I have an old laptop that is good for about nothing but word processing, so I will use it as my journal.

Am still laughing about the wanting to choke your husband. I think I will keep a medical log... and then a journal for me. Good grief if my docs knew all the problems I had in my life with marriage ect, they'd probably send me to the funny farm. (and rightly so) hehe

And the former brain! How well I know it! The day that I wrote the original post "Pity Party".. I have almost no recolection of. It was as if it were all a dream. Very strange. I don't know if I was too tired and weak to process the information correctly or what. Kinda scary though : ) See, told you I was headed for the funny farm.



Thank you again!
Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/21/2007 9:06 PM (GMT -7)   
Darlene,

I'm the funny looking lady with the pitchfork at the Funny Farm. I'll be waiting for you :-)

emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/21/2007 9:41 PM (GMT -7)   
What a terrific thread.

I want to share something that was printed on a card my therapist handed to me this week - (and something that will be a good way to begin my continuation of a journal --

I saw grief drinking a cup of sorrow and called out,
"It tastes sweet, does it not?"

"You've caught me." Grief answered,
"and you've ruied my business."
"How can I sell my sorrow when you know it is a blessing?"

Rumi (1207-1273)



Darlene, you've given us all a great gift by allowing us to be a part of your pain and by sharing yourself with us. I feel better already. I hope you do to.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 6/22/2007 7:36 AM (GMT -7)   
Emmi, lol, I will look for you when I arrive. Although, in thinking deeper about the matter, I do believe I am there already! I mean.. wouldnt being locked up in a nice quiet facility be a trip to the "sane" assylum.

I've often envied nuns. Sometimes when I am beyond myself I imagine being in a convent. The enduring quietness of the stone walls, the cool peace of the rock floor, and silence! ahhhh : )

Pat,
What a jewel you have shared with us! I am writing that down, and passing it on. Tears ran down my face when I read it. Wow... I still have chills! It is so incredibly true, as are most things that endure.

Thank you!

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 7:06 PM (GMT -7)
There are a total of 2,732,357 posts in 301,012 threads.
View Active Threads


Who's Online
This forum has 151172 registered members. Please welcome our newest member, Whydoesithurtsomuch.
315 Guest(s), 11 Registered Member(s) are currently online.  Details
ewafromwarsaw, Psilociraptor, 81GyGuy, Shaz032, Susannah R., summer16, Girlie, Uniform Charlie, Fairwind, Ggrlsav, pitmom


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer