Great saying about depression
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barbe- Check libraylil's quote back on the 22nd. Hilarious! That went on my Facebook page for the day and everyone loved it.
Yes, Mary was incredibly special and could make anyone she had contact with feel special, too.
joan- I'm glad you decided to post because those are all things it helps to share. You and I have a lot of things in common- recon issues, 2 years NED, supportive DH, 2 grown (step)kids and one almost grown, nice home, etc and am also sometimes overwhelmed by "the gift that just keeps giving". Then I start feeling guilty for feeling that way. But that's why I like coming here because everyone on here understands. They know that it's not over when the MX or the recon is (because most of us have lengthly issues with that, too). That's almost the easy part. The emotional part is much longer and in some ways tougher. That's when you start adding up and processing all your losses. So don't think of it as whining or babbling- it's therapy! (((hugs)))
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Aha! I remember that! I remember thinking "If people often disappoint you, lower your expectations!"
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Joan - what is cellulitis? I have seen someone else write about it but never have know what it is. I'm so sorry that must be very difficult. When you say infusions - does that mean you are only the IV for the infusion time or does it take a long time. As you can tell I don't know much about this. I have a friend who basically has almost no immune system and she goes in once a week for some type of infusion which makes her feel horrible for the weekend but no other choice. She has such a hard time so it sounds like yours is similar but more often. I'm glad you posted and please feel free to vent - obviously we all do!
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Joan: i suffer with a weakened, or overactive immune system from my MS.. spent 6 months with a picc line.. is that what you're using?? you can go out, and stuff, with those.. maybe you could do it next time, if you're not using it now..
i had a very resistant form of bacteria, so it took a long time.. with cellulitis, iv works great, and out of the hospital IS the way to go..
glad you're back here.. i love the commercial in tv, where depression (in her robe ) follows her.. thats' true for me, and i always think of that visual...keep coming to us.. we're here to listen, and encourage.. since we find ourselves in the same place.. more , or less.....3jays
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Thanks everyone for your encouragement. Having a much better day today. Went out and got my self a haircut which I really needed and did some shopping. Yes, I have a PICC line and using a really powerful antibiotic, vancomycin. The infusion takes about hour and half every morning and evening...has to be exactly 12 hours apart. I'm on my 8th day with an original order for 10 days. I see my PS again on Monday to figure out the next big decision... Removing the implant or continuing infusions.
This is my 3rd experience with cellulitis infection on my radiated breast. My PS says the radiated breast is always the "bad child". My skin is just so darn thin and the incision site just wants to cause problems. The other two infections were much milder and responded quickly with oral antibiotics, but
this one is way more stubborn. Yesterday, I actually found some online support groups for people on Vanc infusions. Sounds like alot of people end up on these infusions for weeks and months. Geesh! My PS really wants to try to save the implant, but I am prepared to lose it and move on to some revision surgery. I was scheduled for back surgery (spinal fusion due to 3 herniated dics) next week and that has to be delayed until this comes to some conclusion.
Thanks for listening everyone. I am doing better today. Funny thing is that everytime my DH puts his arms around me, I can get the tears going again. He has just been wonderful. See, I really am lucky. Right?0 -
You are lucky to have a good man who will be there for you and be sweet!
Glad you found a support group
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Joan, I have 3 herniated disks in my lower back L5-7? They won't fuse them for me as they said they can't guarantee I'll be pain free!!! How the heck did you get someone to do it? I've also heard that fusing puts a strain on the other disks, but it MUST be better!! I mean, the other disks are now working hard to compensate for the herniated ones anyway..right?? So two surgeons so far have refused me...sigh.
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Awwww Joan!!! You poor thing...I was so thankful radiation was not part of my treatment.
I am sorry you have had to suffer through so many infections. Infections was/is my biggest fear. I think if I had to lose my implant for 6 months you'd have to put me in the looney bin. I jsut couldnt handle it. It is hard to feel like its one thing after the other. I feel like I can't even tell people anymore when things go wrong or I dont feel good. I feel like they dont believe me. People dont realize the long term LASTING effects of chemo and radiation. I have been dealing with these F*&^ing plantars warts on the BOTTOM of my feet for the last year. I am not kidding you...once a week I get the *&^%er scraped down and burned with some chemical. My foot feels like its throbing for two days..I have been hobbling around for a year..but do I complain...I dare not. I swear I dont think a soul would believe me. But chemo brought 'em out and until my immunity system gets stronger I have to deal with all these little viruses that keep popping up..like the vertigo dizzy spells that I am also not making up ...LOL UGH. I look forward to 5 years out ...maybe thats the magic number for my hair ..and immune system to be totally back to normal.
Sorry about your back also, my friend had an epidoral before she considered surgery and it helped her tremendously. Barbe & Joan is that an option for either of you?
Well Joan you are lucky to have such a great source of support and strength. I say lean on him and cry away. You will get through this and hopefully soon it will be a distant memory.
Uh oh Charlie is being awfully quiet....ugh poor Sadie he always steals her toys and chews them up until they are unrecognizable. Yes an exciting night in Baltimore for me.
I hope you are all having a wonderful weekend.
Love you all!!
Diane
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Diane, I've already had 3-4 epidurals in my spine. They aren't to be taken lightly! You are bent over a pillow in your lap as you sit on the edge of the bed. A nurse holds your head down. The doc takes a small bit of spinal fluid out of your spine and then injects his cocktail of drugs into that space! It can do permanent damage. The last one I had a couple of months ago, I actually cried out a couple of times!! I felt like an idiot, as I'd had them before, but this one was SO bad! The doc kept saying "Where's the pain? Where's the pain?" as he held the injection. I told him it was going down my right leg. <shudder> They are painful to get, but I'd handled it before. Now I'm worried that there is too much damage....
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Barbe... That sounds so painful. It is my orthopedic surgeon who recommend moving on to surgery. He is a "surgeon", of course. But I have gotten no relief from PT and drugs, so surgery is the only option left. My back is pretty good in the morning, but as the day goes on, the tingling and numbness in my legs and feet get worse. I saw my MRI and it was pretty ugly even to me who knows little about what I was seeing. My OS specializes in spine surgery at Northwestern in Chicago so I am really hoping he can perform miracles.
I am jealous of you gals with fur babies. We are currently "dog less" and I really miss our old Golden Retriever. He was such a sweetheart. Everyone have a great day... I have to unhook my Morning IV and get going. Really anxious to see my PS tomorrow and get the next plan of action.0 -
Joan, I am currently on LTD to try to get some relief from the narcotics I've been on. I have weaned myself off the strongest ones, the worst being synthetic morphine!! I dread what will happen when I try to go back to work... Both OS's said they couldn't guarantee me to be pain free and I said, well I'm in pain now, so why not try at least? Both said NO. I guess they hate to ruin their track record!! I also have stenosis AND scoliosis!!! As well as arthritis AND fibromyalgia!!! I am crippled as soon as I bend down to my dishwasher. I do get days where I feel very, very sorry for myself. My grandsons are getting too heavy for me to pick up!!! I don't want to be the NaNa that was always "sick"....sigh.
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All this back talk, once again has me thinking. I have MS BUT it all started with numbness and tingling in one leg and foot. I kept asking if it could be a back problem but after my head MRI they have dismissed any of my thoughts on this. I finally got my neurologist to look at my back but he only did the very top near my neck! UGH! Well, it is getting worse. Not sure if it is from the car accident but it is very definately worse. Not both legs hurt terribly at night and my left foot and toes just give me tremendous pain expecially at night but sometimes just anytime. I mean pain like I could pass out. The thing is when it all started, at night I could straighten out my neck and back and the pain would go away - yes I kept telling the neurologist but no luck at all on anything....
So wondering if you all with actual documented back problems, does this sound like it could be my back or is it MS? Any thoughts?
Barb - actually that is what gave me the strenght to get a divorce - when my daughter thought I was dying cause I was in bed so much! My ex. was trying to manipulate things so he could stay home and "take care of me". Kept telling me all the time how tired I looked and such and I thought he was being caring.... nope I think he knew things were bad enough between us - he wanted to play things his way before the divorce and in the long run a lot of it worked in his favor - but then I fell for it. Ugh....
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So, here I am hooked to my IV this morning so thought I'd spend some time on BCO. Stanzie... I really don't know much about MS symptoms so don't trust me on this. My back problems stem from a couple bad slips down some stone stairs in our home, plus stenosis like Barbe and also spondylolethesis. The MRI was taken of my lumbar spine. I get tingling and numbness in my legs from herniated discs pressing on nerves. As for pain, it builds during the day and becomes less of a problem if I just lay down for an hour. If we are going out in the evening, I always try to prepare myself with some down time in the afternoon. I take anti-pain meds three times a day and also an anti-inflammatory. I really hope that the surgery can get me off the drugs.... then I will be down to my anti-depressant, my anti-blood pressure med, and my anti-hormone drugs. Oh, yes and there's this anti-biotic too. Hmmmm... "anti" whatever else. Sheesh! No wonder I am so messed up emotionally. Off to see my PS this afternoon. I don't have a good feeling about this, but trying not to be negative today.0
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Joan, thank you. I did have two small falls but with odd twists and a water skiing accident(don't ask) and the the more recent car accident. Interesting that lying down helps. I guess that is why my initial thought was a pinched nerve.
Wow, that is a lot of anti's.... Hope the surgery can get you off some of the meds. Don't the anti-hormonal drugs cause pains aslo? I hope your PS appointment goes well you actually have a good feeling After the apt.
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Joan, I had two extra surgeries related to infections in both incisions. I had a PICC line and was on two different antibiotics that ran basically 24/7. One had to infuse very slowly. It is hard to explain how being tied to an infusion pump even though they are only a couple of pounds affects you. It is another reminder as you say of how BC has changed and affected your life. I was on it that way for 6.5 weeks after I got out of the hospital the third time on IV antibiotics. It is hard. It is discouraging. It is ok to say so. And when you vent and share how difficult it is you know as do we that it doesn't mean you are not aware of the blessings in your life. It just means this is really hard and no one understands but us who have traveled that road. They don't realize what being hooked up to a pump is like and how you have to plan. My second infusion was smack in the middle of the day. I had to arrange my blood draws at the IV clinic because my second port wouldn't work so blood draws supposedly from the port so no extra stick were now sticks. So on and on it goes. I hope they can get in control of it. We are here for you!
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Sounds like those kind of IV's are more common than I ever knew about. I knew there was risk of infection, like most surgeries, but I guess now thinking about all they have to do with BC surgeries and chemo and rad then of course infections would be greater. I had no idea how long some people had to have those IV's. I'm so sorry for everyone dealing with that. It sounds very difficult and can see how terribly discouraging and depressing it could be. Know we are all here for you!
You know that is one thing I like so much is that people can get support pretty much 24 hours a day which is pretty amazing when you think about it.
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I haven't had the i.v.'s but can sympathize. My dear neighbor developed an infection in her knee replacement and they had her hooked up to i.v. antibiotics for 6 weeks. She said she was going crazy stuck at home so much. I know just having the drains after MX made me crazy and that was just for a few weeks. Sorry for all the challenges everyone is facing. It seems like a lot of us dealing with depression are also dealing with some kind of chronic pain issue which can be so draining.
Stanzie- I always wished there was a magic machine you could step in that could scan your whole body and tell you exactly what was going on with you medically. It's hard with auto-immune diseases like fibro and MX because the symtoms are all over the place. I feel like each doctor is only focused on their particular specialty and not looking at the entire patient. Could you make an appointment with a ortho doctor to get a second opinion?
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Hello to everyone! Just wanted to let you know i think about each one of you and say a prayer. I am doing ok right now but only because i know all of you are always here for me.....Take Care Karin
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Has anyone heard of the AMAS test? Says it can detect Cancer very early in your system. Before mammograms, or other scans. It is a blood test. What it can't do it do much if the cancer is more advanced.
Karin - what a sweet and lovely post ! Made me want to cry.... I do love that we can and will be there for each other - truly a gift
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Hopeful...OMG, that is a long time on IV antibiotic. I saw my PS today and he is real happy with the way things are going. He is keeping me on the IV's for 4 more days.. thru Friday evening. I have to go see him again this Thursday before he goes on vacation. Fingers all crossed that he doesn't change his mind. I am hesitant to go off the antibiotic too soon though. Sure wish my PS was not going on vacation though. How dare he go now! So hopefully, the infection is truly gone. And I can reschedule my back surgery ASAP.
Told my DH that I want to celebrate Saturday night and go to a movie. Ther must be some good romantic comedy out there? I could really use one of those right now.
Stanzie... I have not heard of the AMAS test, but sounds interesting. Like Kate, I keep thinking of that magic machine that could just scan the whole body and diagnose everything. Imagine just one scan and done. Not all this CT, PET, DEXA, mammo, blah, blah, blah.0 -
OMG.. i had my picc for months, but it didn't keep me home!!!you def can go out, if your'e careful of the placement of your arm..
we had a hurricane, and were forced into evacution, when i had mine, packed, and off we went.. i tend to take ALOT , even vanco, to get rid of my infections.. it can be trying, but im sure you won't be on that long!!!
Stanzie: i have ms, as you know, but my ortho ALSO did MRIS of my back.. i have 3 discs deteriorating.. so, pain CAN def. be from the back, not ms..
each specialist tends to be myoptic, and my neuro was "shocked" it wasn't ms.. fool.. like, you can't hurt your back with ms>>> so, go to whichever dr you have, and get your back checked out, too... 3jays
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3jays... I have definitely been out and about. It's just the 2 hour morning IV and two hours again in the evening. Timing is everything with this stuff. My nurse insists that it is EXACTLY every 12 hours so you do have to schedule your day around it. My nurse was telling me that there is now a compression type ball that you can get instead of the IV pole. She says you can literally drop the thing in your pocket and go about your day while delivering your infusion. Anyway, I am feeling better just knowing that there is and end in sight.
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joan.. vanco is THE best drug iv, so i'm hoping it won't be long.. i stuck to the sched, also, but we did it while we were out. carried it in a freezer bag, for fresh foods, from publix.. went to a group we visit, and did it there most nights.. don't let it get to you girl.. they're miracle machines.. do you have a nurse that comes>>
I ask, cause they have to clean the whole shebang after a month.. i found out the hard way.. so, ask them when your schedualed...
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Just wanted to say 3jays that I LOVE your avatar. I may be late in saying it, but it is a beautiful picture!! and Joan I am so impressed with how you are handling the iv situation. I know its tough and a serious drag but just keep reminding yourself it will be over soon. Imagine how great it will be then!!
Ladies, I am off to paint my kitchen. My youngest is home on spring break so I thought I would take advantage of his youth. What did you do on Spring break, gee, I helped my mom paint. Poor kid.
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3jays... I have a PICC line that I may be able to have taken out this weekend if my PS is satisfied when I see him on Thursday. I wouldn't mind keeping the PICC line for a while longer til I feel confident that this infection is GONE forever! I also have a home nurse who is a real sweetheart. My insurance will only allow her to come 3 times a week, but she is very available by cell if I have a question.
cmblastic... have fun painting the kitchen. My DH claims to be allergic to painting so I always have to hire it done. But, when I was in school, we never had "spring break" or so called "senior trips", etc. We just went to school. I took the commuter train into the city (Chicago) yesterday and it was so full of spring breakers out for a good time. Made me remember what a great time it was being a teenager. So glad that I didn't know then what I know now!
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joan 888 I think it would be very wise to leave it in for a week or so to make sure. I know after 6.5 weeks I left it in for another week.
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Joan I am so happy that you got encouraging news from your PS!! Thank goodness there is an end in sight for your iv line. Thankfully I have never needed one but again ...one of my fears is getting an infection that would compromise my implant. I hope the infection is gone for good!
Stanzie I swear by acupuncture. I had major back issues before one of my surgeries and my doc said if you cant lay on the table we cant operate. I called my acupuncturist who came to my house to do an hour and a half long session to which I could not move at all when she got there. i had to have her slowly help me on the table. by the end of the session i was 80% better than the next day I was completely out of back pain. I think I got out of sorts due to my giant puppy. I hightly recommend giving it a whirl. For me initially it was a last resort and now I get a tune up every 6 months. I love it...plus it is super relaxing..really helped me sleep.
Kate sorry havent gotten back to you. Been crazy busy at work...hope to hear something tomorrow I am back in the office.
So I took 3 of my friends in to see my PS today for various botox fillers and surgeries. He was very thankful for the business and gave me a very generous gift card! I am so excited. My friends agreed that he was the nicest doctor they had ever met and my one girl is in medical sales and hates most of the docs she works with.
Ok my puppy is whimpering...i think he needs to go out.
Have a good night al!!
Diane
btw Claire...does your son wanna spend part of his spring break in Batimore...I could use some muscles and paint around here.
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3jays!!!!!! LOVE LOVE LOVE!!!! Your picture! You are so adorable and just like I pictured you!!!! Thank you about my back. I'm wondering more and more if the car accident has made things worse so my friend's husband is a lawyer and he knows of another doctor I can see.
Diane, that is nice to hear about acupuncture, I was wondering... a friend of mine has lupus - recently diagnosed and she is having such a hard time, not only was she a competive tennis player but an ER nurse so this has really gotten to her... She is in so much pain.... she had accupuncture and things are worse... but other people I know really adore it and so maybe it depends on the person doing it. I'm so glad to hear it is helping you. I have thought about it!
The new pain I've been having is pain in my upper legs and on the front and sides and then my left leg my toes hurt so bad just all of a sudden that I had to stop the car and pull over and just sat there crying almost screaming it hurt so horribly. At night my foot just throbs. If I get up and walk around it goes away. The neurologist says everything is MS. But how can it go away if it is MS. Sometimes I just cannot stand doctors!
Claire - you are painting your kitchen!!! Wow, I'm so impressed.
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stazie: NOT EVERYTHING IS MS!!! although the neuro's think soo.. i just found out some of the muscle problems i'm having are from the hypo.. the neuro said "obviously" spasms from ms.. yes, some are, but not these!!!
always check it out.. im glad your going to.. a car accident can cause LOTS of problems...
esp neck/back..
im not surprised acupuncture didn't work for your friend.. the acupuncurist told me he could do "some " special txs for the ms, but not regualr acupuncture.. probably the same for her.. are meridians are compromised by prexisting disease...
thanks so much, ladies, for a great response on my avater.. i wanted to get "away" from the 3jays, and i finally found a wig i was willing to be seen in..
a friend here, sent me a red wig , and im going to get it cut, and have YET another change.. i hope to have the right cut, and color, thats' more me..
i laughed.. someone here said.. oh 3jays "you're REAL!!!im still laughing... have a good night, ladies..
Oh, and i hope that picc line gets done soon,joan. i think you're right to wait for PS.. maybe a blood test, or culture, 1st???
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3jays- Where did your pretty face go? (Not that I don't like those adorable puppies but.....)
Hope everyone is having a moving forward kind of a day today. Have to admit I've been a bit stuck this week. Sunday I had to have my wedding ring cut off due to swelling in my hand from LE. (Which as most of you know I blame on surgeon error.) It was so difficult to see my beautiful ring ripped apart and it seemed so symbolic for everything we go through with BC. I'm dealing with a lot of pain from the LE and the PT is making my fibro worse so it's been challenging. I had another pity party for myself yesterday but DH was sweet and he came, too. I've been soaking up all the knowledge on the LE threads and have come to realize I'm not getting optimal treatment with my LE therapist so have an appointment with a different one on the 11th. Sometimes just feels like nothing is ever easy, you know? I think there are some life lessons I'm supposed to take from all this but can't figure out, for the life of me, what they are. Just trying to navigate this all with as much grace as possible but find more and more anger bubbling up to the surface. Maybe it's time to invest in one of those punching bags? LOL!
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