I am going to apologize ahead of time for this, I really need to do this because the only people that can understand me are thousands of miles away and on a forum....
I will start by saying how frusterated I am with the system, with TOS and oh heck..all of it. I am tired of hurting. I am tired of putting a smile on my face and saying all is fine when what I really want to do get on with my life. This past year I have gotten far worse. I hurt almost all the times now. The past month has been very rough for me. I used to only have to take my demerol two or three times a week, to every night to now I need it through the day in order to get through the day. I have begun the Topomax but they say it will be a couple weeks before I see a difference. I HATE taking pills. I HATE that it has come to the fact that I HAVE to take pain meds. As some of you may know I went to see another doc to see about finding another doc to have my surgery pushed up as Dr. Bethunes waiting list is so long. I WANT to wait for the best here but I did call Dr. Bethunes office this week and she told me that I could still be another year or TWO on the list, it goes by cancellation....how friggin discouraging is that??????? I can honestly say that I really don't think that I can't wait another year or two to have this done. Judging from how I have gone down hill the past year, where will I be in a year?? I can't sleep well....I wake up hurting....the burning pain makes me nauseous, I have no stamina anymore and I hurt like heck. I remember when I would go a week or two feeling pretty good, very little to no pain...where are those days??? ANd no one understands or wants to listen. My hubby is wonderful and is very supportive but he is the only one. The rest of my family doesn't want to hear it....people don't understand nor really care why I don't want to do something....or why I don't feel well. I am tired and worn out. This TOS kicks the snot out of you.
I'm really frusterated with the lack of medical care and knowledge of TOS. Of providing those around me with the information and tips to help me instead of the other way around. My house looks like crap because when I get home from work I hurt so bad I can't bloody do anything. I really do hate to whine...I just needed to get this off my chest when once again I wake up hurting and I look at the mountain of things needing to be done and wonder to myself if I can do it.
Sorry guys....Have a good weekend.
RAch

RachaelPlease don't say you are sorry. that is what this forum is about. We NEED to express the way we feel to people who understand. I am lucky in that we own our own business and I don't have to go to work every day, just here and there. i don't know how I would go to work each day and come home to a house that needs cleaning. I have a cleaning lady every two weeks which helps with the major stuff. Of course there is still laundry and bathrooms and kitchen cleaning. I am glad your husband understands, as does mine. I'm sorry the rest of your family doesn't. I'm lucky with that. but I do understand the pretending your ok when your'e not. Fake smile on your face when you really want to climb in bed and hide under the covers. I wish there was a TOS organization like any other medical issue. I think because it is so broad that no one cares or is interested in taking up our cause. I don't know what they would do any way. Not like raising money for diabetes or cancer research. I just think information would help so many people.

this is the place to vent so do not apologize.

I just came in my sons room. Found an old printer turned on its side on the floor and the ink came out on his cream colored rug!!! Not sure how to get it out!!

Good Luck, Linda

Linda, try Milk on that ink. Then Resolve carpet cleaner.

Rach, vent away. I think you should look at traveling to another TOS pro if at all possible - a 2 year wait?! OMG, that is too long to be suffering in the place where you are now!!

Be glad you have your husband. just 1 person to place your trust in can make all the difference in sticking this thing out. The rest of us... we have the Forum and I'm grateful for that and all of you. I got my heart smashed last night and am about as low as I ccan feel (but won't vent that here). Being able to listen to you and talk to you is such a help to me... we all help eachother in ways we can't even imagine.

our families and 'friends'... it's hard to fault them for shutting down on us...this Monster is a very scary thing to battle.

hang in there sweetie!
Anne

Thank you Linda and Anne. I appreciate the words of support.

AnneI have been working slowly on the stain with water and clorox cleanup. May not be good for the rugs but it is working. It isn't the boys fault. I think I turned it on it's side to make room so I cant' yell at them for this(I'll find something else!). I have a freezer in our basement that was not closed awhile back so we had to throw everything away. I am now, between rug cleaning, cleaning the freezer out because my husband is buying food for 60 people he invited over for a barbeque! I need room for ice and extra burgers. Anyone want to come? I have a great hot tub! Pool will be about 88 degrees! If you are in the area of central NJ let me know! Beer and wine!

I am going to try to relax and stop yelling at hubby for doing this to me. He MUST help!

I think everyone has to vent. Otherwise we will go crazzzy!

Linda

and more hugs to all of you ....

Rachael- can anyone do trigger point injections or botox in the meantime while you wait for surgery? They were very helpful to me, though not permenant.

also- consider a cleaning person and weekly massage part of your routine- talk to your husband about how it will help your pain level each day, and work to just make it a regular part of your budget. If you can find a good massage/hellerwork/feldenkrais/PT person to work with you, you can probably reduce your daily pain quite significantly because they can help you loosen those muscles. when I was working before surgery I used to see my hellerworker for a double session each week. It was well worth the time/money for treatment as it helped me to function all the rest of the time. If you consider the options to be disability or quitting work until surgery, it might look a LOT more affordable.

Johanna

honey, i know just how you feel. i think a lot of us do. and i know how grateful you are to have that husband of yours, who is so understanding and supportive - many of us (myself included) have to live alone with this nasty TOS monster -. if we had friends and colleagues once, they're long gone, same for husbands, lovers, etc. it's not that they don't love you or don't want to know what's up with you, aren't concerned about your health or anything... i think they honestly just don't "get" it. it is not in their experience to suffer this kind of pain, or to have something that a doctor cannot fix. and it scares them on a very deep level to think such a thing might even exist, truth be told. so they don't even want to know about it, and it's safer for them to pretend that it's all in our heads or something.

i honestly don't think you will have to wait as long as you think for dr. B. think of it like a waiting list at a good restaurant, rach. they always tell you it's gonna be longer than it actually is, right? that way, the people who aren't really serious about dining there will usually find someplace else to go and wander off. the ones whose hearts are set on that particular establishment are left pleasantly surprised to find their names called within 10 - 15 minutes, after being told they must wait at least 45 minutes to an hour!

but he is not the only surgeon out there and if you feel you need the operation sooner than he is able to oblige you, then you do what you must to take care of yourself. but bottom line, rachael - we all need to face the fact at some point, that surgery does NOT take the TOS away! it is not a "fix" and it's not like you can go get that rib resection or scalenectomy or whatever done and bam! your sx will disappear, just like that. just doesn't work that way. i wish it did, believe me! and i guess for some people, whose cases are primarily vascular TOS, or whose dx's were extremely timely or whatever, the surgery can bring a very good result.

in most cases, however, it is just a part of the answer... and you will still need to keep searching for the right things that work for you to lessen your sx so that you can lead the life you want to afterwards. ergonomics, PT, emotional support, meds, lifestyle changes, etc., the list goes on and on...

but to address the pain and frustration you have right now, and we've talked about this before, rachael - it may be time for you to be switched over to a long-acting opioid. demerol is not a good choice for chronic pain patients, for the reasons gibb gave you in the other thread. we certainly don't want to put your internist on the defensive here or anything, but topomax is not going to address the pain issue, plain and simple. that med is for the nerve sx and/or migraine h/a.

no, what you need is a narcotic like opana ER or MS Contin, coupled with a short-acting one for breakthrough pain, like opana IR, roxicodone or dilaudid. then a muscle relaxant (not a benzo) would be good to have as well: zanaflex, flexeril, or skelaxin are good choices as far as that goes. if you are not sleeping, you might need lunesta, ambien or something like that (but i would try adding effective long- and short-acting opioid meds, a good muscle relaxant plus the topomax first - you may find that you don't need anything else-).

no apologies needed, rachael. we know how scary and how frustrating this is. TOS is a wicked taskmaster and you are right when you say there is so little understanding. you probably know more than your doctors or anyone else around you does at this point. hard to accept that, but it is true. sadly.

are you still in PT? because a good program, working both with a professional who knows how to help a TOS'er and at home, can make a big difference while you are waiting for your surgery. and, of course it goes without saying that after your surgery you will need this person as well.

i am so sorry you are having a hard time. i feel just as angry, resentful and hurt as you do sometimes and it is perfectly OK to express those feelings here. we all get discouraged, TOS is a very difficult thing to live with and can make even the smallest task seem impossible sometimes. but this is the one place you don't need to explain yourself, rachael - because most of us have been right where you are. so hard to keep smiling and some days you shouldn't! just let it out. this sucks.

keep calling that PM doc's office to see if they can't get you in earlier on a first-visit cancellation. maybe that would be an option. or perhaps your internist would be willing to consult with the PM doc and prescribe more appropriate pain meds to treat your sx in the interim - might be worth asking.

whatever you decide to do, rachael, know that you have a lot of support here. if you have any questions or anything, ask away, OK? and hope your weekend is as nice as can be, in the meantime. i sure know how you feel-

alison
"Be Brave"

Everyone said such good things.

I think many of us have made adjustments to find as many ways as we can to make jobs and tasks as easy as possible.

Maybe we can make a list of changes we have made to make work or household chores easier.??

Delegate those pesky tasks as best you can. Kids can start to help at even a young age on simple chores.

We need to take extra time to recoup after those uses that really set us into flares and pain. Relaxation and self care.

Posture and body use awareness - { I know you are all getting sick of me saying this- but every little bit has to help}

Question- how often do you check yours when you are hurting?
do you find you might be slumped, hunched or pulled forward more when you are hurting?
kind of as a protection or to escape from the pain?/
just wondering?


I think many of us still go thru a grief process for our change of work or activity levels - our freedoms to do things like we used to do.
That process is very normal and everyone goes thru those stages at differing rates.

I agree about the massage and delegating tasks part. I worked till a month or so before surgery and went for 1hr weekly massages every week...they helped quite a bit...I was also on Neurontin (5x a day!) and it wasn't till after surgery I ended up on pain meds (that's another story)

I had family/bf help out with household chores and when something didn't get done I didn't sweat it. I adjusted my work routine best I could, fixed my workstation to be as ergonomically correct as possible (and it was still far from being 'right') and just listened to my body.

I also called the surgeons office weekly to let them know I was there and waiting...I ended up getting a last minute cancellation as they knew I was ready at a moments notice.

Hang in there...

Thanks everyone. Having a rough moment. Will write a message in the am. All your thoughts and suggests are very much welcome. Thank you. Alison and Vic..thank you again for the info you have emailed me...