11-24-2007, 10:09 PM
I am so sorry to hear about all of your pain, (both the physical and emotional.) I am disabled from IC too, and like you, went from being a workaholic to total disability. (I worked about 70 hours a week.) My onset was pretty gradual, until my pregnacy, and that is when my Lupus appeared and the IC hit at the same time, (as well as normal pregnacy peeing, and I never recovered, and was never able to go back to work.) That was 7 yrs ago.) Like you, I LOVED my job! I worked a furniture store, selling and doing interior design in peoples houses, offices, but mostly I worked the store. But, like you, I truly loved my job, and working with people! I loved every minute of it, and being at home, not interacting with people every day, when you are a "people person", was the toughest part of going on disability. (Plus the loss of independence, which you are no doubt going thru too!)
It took me a LONG time to realize this, but NONE of the "losses" you are feeling or I was feeling are necessary or true! Yes, you heard me right, NONE of them! I will explain what I mean by this later in my post to you, but first, I want to deal with the other issues first, and I will address these things last. Okay?
First, regarding the depression and anxiety, I suffer from both too at various times. I have to say that at times, I am not sure which is worse, my physical diseases or the emotional ones! I truly dont! ...When I was hospitalized a few weeks ago, it was b/c I was in SEVERE retention and couldnt urinate... AT ALL! (It had gotten SO bad, that I couldnt even urinate by cathing myself with an in/out cath anymore b/c my urethra was so swelled up that the cath wouldnt go in!) I had a Lupus attack, an overwhelming infection that hadnt responded to 3 diff outpatient abx, but the whole thing was brought on by SEVERE stress.
While in was in the hospital, after they had me hooked up to the IV abx,my Gyno/my IC Dr, (even though I was near death the first few days), was more worried about me emotionally than physically, if you can imagine that! That's because the stress, not the infection is what locked up my pelvic floor preventing me from peeing! He said he knew that though the infection, Lupus, fever, and everything else were VERY serious, and even life threatening, but that as a DR, he had the tools to treat those, but the depression and stress were just as bad if not worse than the other! (Though he had the tools (anti-depressants) to treat the stress too, he was trying to get me to TELL him what was going on that had CAUSED the stress, so he could "talk me down" from the stress.) I understood what he wanted and I told him, and he helped me. (In case your wondering, my husband had been a HUGE JERK to me while I had been sick, refusing to take to the hosptial while we were on vacation, stepping over me in the floor when I collappssed, and leaving for work etc. Just generally being completely without a drop of kindness or compassion throughout our marriage or my sickness, and it culminated on our vacation during my Lupus attack and my really bad infection.) He also did much worse stuff that is too bad too print. But, my Dr WAS kind, compassionate and understanding and uniquely insightful. (He is a workaholic, like my husband, and also has a wife with IC.) So, he was able to give me some perspective that I hadnt considered before, and recommend a Christian therapist that has been invaluable!
I dont have ANY IDEA why I just told you all that! LOL! (OTher than I am tired, it is 2:11 am and I am already medicated, plus, I am a rambler anyway!) But, I guess I just wanted you to know that I have stress too, and whatever you are going thru, I UNDERSTAND! But, there is NOTHING that cant be worked thru and fixed with God's help, prayers, meds, therpy, stress mgmt, friends, family, support here, etc. We are going to help you get thru this! Okay?
I am okay now. (They got my infection treated even though I got ANOTHER one I have been fighting THIS week, but I am getting over it now too. But that's another story! LOL! But, they also got me on a super strong antidepressant and gave me new tools to manage the stress.) But, the point of all that is the mind and body are so intracately linked, that when one is hurting, the other is going to hurt too! When some people hurt, or get stressed, they get headaches. For others, they feel the tension in their neck and shoulders. For me, it goes to my bladder and pelvic floor, locking up my bladder, causing pain. For you, it causes you pain emotionally and physcially too. It is DEFINATLY all linked!
I know that you are depressed and anxious right now. I see that you are a nurse, and are seeing a Psychiatrist already. So you have both already correctly identified that. However, RECOGNIZING the problem is only the first step. Though your Dr. was competent at THAT part, he is obviously failing you at SOLVING the problem, since you are STILL having this problem. (That is UNLESS YOU HAVE NOT TOLD HIM that you are still having problems.) But, since you are here telling us, and you see him once a week, I am CERTAIN, you have told him! But, if you have not, then obviously, that is the FIRST thing you need to do, is TELL him, and give him a chance to help you.
If you HAVE already told him that you are still having problems, (as I suspect), and he just isnt helping you enough (or adequately), then you know you have got to find a new Psychiatrist immediately! (As in, call today and make an appt for today or tomorrow!)
Not to sound to bossy here or anything, but I am pulling out my "Mama Card!" And as a Mama, mothers know what is best for their children, and though you arent my child, you are somebody's child and I am somebody's Mama! So, this time, you're just gonna have to do this one "Because I said so!" LOL! (After all, isnt that what you're own Mother would tell you?!!!! (Yep! That's what I thought too, b/c they ALL say that! It's in our handbook! LOL!)
After all, in your post, you yourself mentioned that he only gave you Elavil 25mg for the Depression and you are on Xanax twice a day. You said the problem you have had in the past with antidepressants has been that you havent been able to tolerate the side effects. Please list the medications you have tried, along with the side effects you have had. Perhaps we have also tried these, and had these side effects and have ideas of coping methods (or we know what meds OUR Drs r/xed to counteract the side-effects WE had, so that maybe you could ask YOUR Dr. if any of those options might work for YOU!)
One reason I am on SO MANY meds is b/c I have many side effects to the meds I take! In 3 instances, my Drs have had to r/x OTHER meds to counteract the side effects of the FIRST med. Though (admittedly), this isnt optimal, it is just something we have to do sometimes to get the help I need.
(My personal examples of these are:
1) Since I have to take a daily abx propholactially, and have had been on 7 different abx in the last 2 months due to 2 very resistant infections, the Drs have to give me Diflucan for the Yeast to counteract the antibiotics.
2) Since I take Morphine, Percect, Baclofen, Atarax, Elavil, AmbienCR (when needed), and Phenegren PRN all of which CAUSE DROWSINESS in ADDITION to my having IC, Lupus, and Fibro which cause fatigue, and my several other meds that cause drowsiness! My Dr, gives me Provigil to counteract the drowsiness side effects of the meds so I will be able to wake up in the mornings.
3) Since I take Pain meds that can slow down the digestive track and cause constipation, (increasing pain), and since I also have IBS, I take Metamucil and stool softners to counteract THAT, and every 3rd day, I take a Laxative, (Drs orders), to counteract the meds effect on my colon.
So, you see, it is QUITE common for a Dr to need to r/x things or for a patient to take over the counter things, or make dietary adjustments, etc. in order to counteract the side effects of a med(s), just to be able to take them, make them work effectively, (and without giving you a NEW or WORSE problem in the process!)
Having said ALL of that, I really DO think (in my non-medical opinion), LOL, but I DO truly think that you need to either talk to THIS Dr. or find ANOTHER Dr. to get you on an antidepressant that will be effective and that will do WHATEVER IT TAKES to manage the side effects! I also truly think (in my non-medical opinion :)), that you need a stronger, more effective and/or more frequent anti-anxiety medication. BUT, I would wait and try the anti-depressant FIRST, (along with the Xanax your taking now) b/c alot of times, the right anti-depressant can calm down the anxiety significantly too!) However, if the new antidepressant helps the depression, but you still need something more for the anxiety, (and you will know if you do!), then you will also need to address that issue with your Dr.!
Have you ever tried Seroquil? It is one that is definately worth considering discussing with your Dr. if you haven't and getting his thoughts. Though it is "officially" an anti-psychotic drug, it is also used off lable for depression AND anxiety! Plus it is helpful with sleep problems too! (Yes, I have taken it!) Please dont let the fact that it is officially classified as an "antipsychotic" stop you from trying it if your Dr. has suggested it or agrees it could be helpful. After all, you would be using it "off label". Just like I often take I take Immuran, a cancer med to treat my Lupus, but that doesnt mean I have cancer either! :) It is the same kind of thing here!
At this point, I want to state my little "disclaimer" here. I am NOT a Dr., nurse, nor am I a medical authority of ANY kind! I am just another IC patient like you, who just sees you suffering and wants to help. But, neither I (nor anyone else here) can or should ever offer you any kind of medical advice. We are just other patients here trying to offer our support and trying to encourage and empower you to speak up for yourself and go back to your Dr. (or another one), and get the help you really, really need.
(Obviously, you, as a nurse, know this,) but I just want to make this ABSOULUTELY CLEAR, in case anyone new is reading this and might be in your situation, I want them to KNOW that NO ONE here is an expert in ANY WAY, no matter how well informed any of us might be on a particular subject. (We have some remarkably brilliant woman here who I am afraid might be mistaken for medical authorities if we dont clarify this from time to time! Not me, of course, (LOL!) but other ones!) Though I WILL say this.....I DO wish almost EVERY DAY I come here that ANY ONE of these remarkable women HAD gone to med school, and practiced medicine in MY TOWN! Because ANY ONE of them WOULD HAVE made wonderfully kind and compassionate Doctors! BUt, alas, none of us ARE! BUT, we DO have a couple that I think are in college now and are planning to be Drs! :woohoo: I am just hoping they specialize in IC! (So you two, if you are reading this, will ya at least consider moving to Kentucky when your done, for my sake?) :smile tee
Now...I told you at the beginning that I understood your need to feel needed, (after all you ARE a nurse, and that IS a "helping profession"), and with the crazy hours you are bound to have worked, this is a VERY natural (and healthy) need to have! Fortunately, there are PLENTY of ways to fill this need, AND your lonliness, AND your need to be around other people!
For starters, you can come here! There are over 24,000 registered members here, and that is not even counting all the visitors who come here every day. (Yes, we have visitors who are "regulars", just like we have members who are "regulars! I know one in my own town, personally! (She said she hasnt registered b/c she doesnt post online, she just reads.) But, since you DO post, everything you write, helps countless people! Not only does it help the ones who read it, but once THEY read it and absorb the knowledge you have passed on to them, then, as they have learned from you, they will take that knowledge and share it with someone else, and help someone else!
I dont know how to say what I want to hear without it coming across as boastful, (which I dont mean it to AT ALL!), but I want to share something very meaningful with you and the others here. When I came to this site, I knew NOTHING. I mean NOTHING about IC. My Drs helped me some, but he had a very finate amount of knowledge about IC, and wasnt able to learn a whole lot more, b/c he is too busy practicing medicine and then, when he isnt, he has a family of his own, and when he DOES get a chance to read and study, he DOES have other diseases to learn about TOO besides just mine! Ya know?!! So, when I came here, 3 yrs ago, I was able to jump in here, read and absorb everything that all the women here gave me. They also supported me kindly and graciously along the way. But, every scrap and every nugget of info they gave me, I carted back to my Dr! NOW, he is EXTREMELY knowledgable about IC, and I would put him up against ANY expert in the whole country...even Dr. Parsons, Dr. Mouldwin, Dr. Evans or WHOEVER! Why? Because he has learned from ALL OF them! Why? Because all the women here have learned from all of them, so I have learned from all the women here, and taken THEIR info and taken it to my Dr! And NOW, my Dr. is using that info to help his other patients who otherwise would STILL be suffering, if I had never found this place or taken the time to read and stay on here and help other people! Does any of this make sense?
That's what I mean by saying that I hope that doesnt sound like I am bragging, b/c I am not at all! Because I am not doing anything here that anyone else isnt doing! And THAT is the MOST AMAZING thing of all! EVERYONE here is doing the EXACT same thing as me! We are ALL empowering each other EVERY TIME we post! We are ALL teaching our DRs EVERY TIME we go! Whether ACTIVELY, (as I am now doing), or passively,(like if an appt goes bad and they didnt help you, maybe they might think about it months later and realize their mistake.) But we are all teaching, supporting, and empowering women! And NOW, you can be a part of that, where before, when you worked, you didnt have the time, but now, you will have time to do something more meaningful than you have ever dreamed possible! Try it and see!
One last thing, and then I will hush! (I promise! :)) (I know I am long winded tonight, but my friends here can all tell you, though I am always a rambler, the MORE I care, the MORE I write! Unless of course I am really, bad sick and can only manage a sentence.:) But, obviously, I was moved DEEPLY by your post, or I wouldnt write so much!
But, the last thing I wanted to tell you was this. Regarding your loss of independance, (having to move back in with your parents for financial reasons.) I am assuming this is b/c you cant make it on your Disability check alone. Right? Yet, you WANT to work, and are DYING to try it, yet you are sick, but you DO need the money. Does that about sum it up?
Well, here's an idea....My Mom is on Disabilty like me (She was in a bad car wreck and broke her neck and fractured her skull, plus she is bi-polar. Her neck and skull healed but obviously she still has pain from that and then the bi-polar thing, you know how you never know when you will have an episode there.) So, anyway, like you, my Mom is a Nurse. (She was an RN). Like you, Mom's check isnt enough to pay her bills without something else. So, since Disability allows you to work and make up to $800 a month, Mom found the PERFECT job for her! She sits with the elderly in their homes! I think this might be the thing for you too!
Here's the deal....First, to find the jobs, sometimes she calls nursing homes, or churches, but if nothing turns up there, (or if the patient or pay doesnt suit her), then she puts and ad in the paper offering her services. (Former nurse will sit with patient in Bowling Green area. 8 hour minimum shift; 12 hr max shift (prefer 12 hours), night shift only. $7-$12 hr depending upon level of care pt requires.)
Since she is a former RN, she is in VERY high demand! (and you will be too, if this kind of work interests you!) Mama does the night shift b/c she IS disabled and the patients sleep in the night and dont run her to death and since she can pick and choose her own patients most of the time, when she gives her "pay range" in the paper, they want to negotiate. So, she negotiates sleep, and usually there is another bedroom, so they put a baby moniter in each room and then if the patient wakes up and needs her, they call for her. Otherwise, it is kind of like with a baby, (you sleep when the baby does!)
Mostly Mom's duties are when she gets there, she gets the person into pjs and gives bedtime meds, and usually a bedtime snack. Then, Mom'll usually put lotion on them and rub their backs and say their prayers and tuck 'em in, (sort of "mothering" them), till they fall asleep. Then, she sleeps too! She says that it is pretty common for them to get up 1-2 times in the night, but they call for her b/c they get scared and are afraid of falling and the dark. (Lot's of times these are Alzheimer's pts, so in these cases, she sleeps in a lawn chair in the room WITH them! :wink:) Then, they usually wake up around 5:30 and she gives them a bath, dresses them, fixes their hair and makeup, then makes b-fast, gives them meds again, does those dishes, and by that time, it's time to go! She has a job exactly like this right now (Ky) that pays $12 an hour. She works 12 hrs at a time, and makes $144 a night. And this is perfectly legal as long as you make less than $800 a month. But, let's say if you found one at the lower end, and made $7 an hour, that would be $84 a night! (She also has several friends who want to make the extra money too, and on nights Mom feels too bad to go in, (after all, Mom is disabled too, and you never know when something is going to strike, then she calls a friend, and they are always THRILLED to cover, b/c they get paid to go over there and basically sleep, and can still go to their normal jobs the next day! But, it really IS the kind of job that even on a BAD day, you can pretty much do it, b/c they are sleeping!
And NO ONE says you HAVE to do the sitting in THEIR home either! You could also do adult day care in YOUR home in the day time (or night time since there are people who are trying to take care of aging parents at home but are still working, who work nite shift themselves, but dont want to leave them unattended at home while they are working!) Or, you could even do child day care and make extra money! And, no one says that you only have to have one child or one adult at a time either!
So, you see! There ARE ways out there of making money, and STILL helping people, and STILL using your nursing license, intellect, and God-given compassion! You just have to be open to all the possibilites around you!
I do think that you and Sharon are onto something too with the idea about volunteering for the American Red Cross! I hope you keep pursuing this as I think it will be a mutually rewarding experiance!
My apologies again at the length of this post! But, again, as I said before, it is because I care so much! But, I DO hope that you have found at least SOMETHING in here somewhat helpful! :) Please write back and let us know how it goes after you talk to your Dr. or after you call tomorrow and/or get a new one (since I DID pull my MOM CARD! LOL! :))
If you EVER need ANYTHING that I can help you with, or just want a friend to talk to who understands, pls pm me ANYTIME and I will be glad to talk to you and give you my numbers. You dont have to go thru this by yourself! We are all here to help you thru this! But, ya gotta come back and stay with us to give us a chance! :)
Sending you HUGE hugs, and many prayers, and lots of encouragement,
P.S. I wanted to let you know one last thing.....I got some extra help on this post from my Mom. I called her and read her your post b/c I thought she was uniquely "qualified" to help you this time, b/c like you, she is was a nurse, (RN), but now disabled. When she worked, she worked CCU, ICU, Triage in the ER, and then after she was d/xed as Bi-polar she went into Psychiatric Nursing. So, the Seroquel was HER suggestion not mine. (Though I have also taken it!) She has seen it given many times for depression/anxiety and for the same people that had trouble with sleeping b/c of the anxiety. But, even though Mama WAS a Psych Nurse, you know, she STILL hasn't been liscensed or practiced in about 10 yrs, and isnt a "medical authority" of any kind, any more than anyone else. Okay? BUT, I DO think HER remarks ARE weightier on this subject than MINE, B/C she IS more knowledgable than me on this, and we all need to seek wisdom wherever we can find it, ya know!
Also, of course, she had told me previously how the whole sitting w/ the elderly thing worked, (and how much it helped her self-esteem with her own issues emotionally and financially after having to go on disability herself when she had to leave nursing. But, she told me to tell you that if you wanted to know anymore, or wanted to talk to her about this or anything else, or could use a friend, that I can give you HER number too! So pm me if you want my Mom's number, mine or both! Love and hugs, Amy
Powered by vBulletin® Version 4.2.0 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.