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Old 02-11-2008, 08:31 PM   #1
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Join Date: Oct 2007
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zig2be HB User
Newbie on Board

Hi everyone!

I am new to this forum and have a bunch of questions that I am hoping someone can help me with it.

Here's my bio...

39 yr female who had spinal fusion w/ Harrington Rod placement at age 13.
Past year I have been having severe lower back pain with numbness and paralysis from hips down to toes when over doing it. Spent from May to just today going from regular ortho to neuro to pain mgmnt doc to a top doc at a top hospital in my area who will not treat me because he is uncomfortable with my case. (not comfortable mentioning names) Only reason he is uncomfortable is the high malpractice law suits in our state.

My pain Management doc who is wonderful and who is right on the money said that I will need a TLIF and a ALIF. But again the top doc is useless.

By chance I came across a forum like this - probably a connected one and while veiwing came across people who actually have the same thing I did. What a relief it is to know and prove that I was not the only one. This has been going on now for so long that friends were looking at me funny.

I must say "I am not crazy"!! Because reading thru all of the threads people kept saying what a wonderful doctor Dr.Boachie is. And today I got to finally meet him (waited patiently for 4 months) and he is. He like my pain managment doc are telling me I need a TLIF and a ALIF. He would do them at the same time. Has anyone ever had that done? Both at the same time? What's it like? I am scared to death of having another back surgery. Cut anything else out of me but don't touch my back is how I feel. But I just can't take the pain anymore. It is ruining my whole life, My marriage is suffering because of it, can't work, kids have to grow up a little faster because mom can't do it and they have to do with out things because I can't work. I was/am going back to work. I don't know yet. Depends on how I feel. We really need the money and plus when I go back to work I will have my winters off because I work for a swimming pool company. I just don't know if I can wait till then. Just finding all of this out today has made my mind go off into another direction. I did not think my brain had anywhere else to go it's so full. I just am not sure on what to do and I am looking for suggestions here with someone who knows what I am going thru because here there is no one not even the hubby.

One more thing.. I was amazed when Dr. Boachie told me that the bottom end of my Harrington Rod was not fused and basically free flowing around and that from L5 down is now crushed and desintigrating. I was 5'7" the last time I was measured. Today I am now 5'4". This is blowing my mind because no one picked up on it. And all of that time, effort, pain & suffering, depression and I mean heavy depression wasted on all of those other doctors to finally having an answer. But that is all we have right at the moment. Things still are not fixed and I still need to figure out when to do this. If I could have my way it would have been today cause I hurt so bad.

Ok that was not a short bio sorry, I tend to get on a roll with words because this is my main form of communication with people.

So to those who know what I am going thru and can help me out I would really appreciate any advise,comments, whatever. I need some help on how to plan this. I am an analist so things have to be picked down to the nitty gritty so I can come up with a plan before doing this because in my world nothing gets done unless I do it. And that is how come I am in this mess.

Thank you to all who took time out to read this. And thank you to everyone who might respond. I look forward to making new friends here who know what it like to be like this and can walk one another down the road to healing.

Good night
Theresa
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T.

 
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Old 02-11-2008, 09:00 PM   #2
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ms_west HB User
Re: Newbie on Board

Zig,

Welcome to the board! It sounds like you have been thru the ringer and had surgery at a very young age. My first back surgery was at 17 and I have had 3 since. I am now 43. So we have similiar backgrounds

I am so sorry that you are having so many problems and want you to know you have found the perfect place to come to and talk with other spinneys who have been thru similiar things that you have. Just keep in mind that we are spinney patients and not doctors.

The beauty of this board is that someone is usually online 24/7 so if you can't sleep jump on the board and start posting.

My first recommendation is when you exit this thread and are back on the page of threads, look at the top of the page and you will see a thread entitled, "Post Surgical Tips" and it is jammed with information/advice for you.

It is scary undergoing surgery and despite the fact that I have had four and my most recent one was 11/28/07; I was still scared but I made it thru just like you will. Many hospitals let you take headsets into the operating room and are willing to put them back on your head in the recovery room especially if it is meditation music. So keep that in mind especially if they are relaxing for you.

It is very hard discussing everything with family members and hubby because as you stated they just don't get it. Another piece of advice someone else on board gave me is to stop talking to your family about your pain and the a back issues. They get tired of hearing about it and they do not get it causing them to become frustrated.

My husband and I have developed a code. We actually use the pain scale 1 being an excellent day and 5 being a painful day and 10 being a disaster of a day. We assigend each of these numbers with an explanation of what I need help with when I am a 5 - need help around the house, can't drive the children anywhere, need help with housework or dinner, etc. If I am a 10, it means you have the kids I can't deal with them or preparing meals, etc.

Also, I highly recommend you let go of the past. All it will do is bring you down. Focus on the positive and moving foward. Let go of the past because it will only make you angry and depressed and lets face it back problems are depressing enough. You don't need to hang onto old baggage.

Think of what you need to do to move forward with your forthcoming surgery. Consider having a Grandma/friend/family member move in for the first 6 weeks after surgery and take over running the house so that you don't have to worry about the cooking, cleaning, taking care of the children, laundry, etc. This will allow you to concentrate on yourself and not do anything to reinjure your back.

Hope some of this helps and if I think of anything else I will post more later. Right now my meds are kicking in and I at least hope that I have given you some helpful suggestions and make some sense.

Take care and I will be lifting you up in prayer.

Pepper

Last edited by ms_west; 02-11-2008 at 09:08 PM.

 
Old 02-12-2008, 06:05 AM   #3
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Re: Newbie on Board

Hi Theresa, and welcome to the board!

I don't come across many people who are so similar to me! And what's more, I used to live in Sellersville before we moved to Virginia! My best friend was in Quakertown! Too bad we have to stay anonymous.

I first started having back problems at age 14 and asked my parents to take me to a doctor because of the pain. They said no. So I wasn't properly diagnosed or treated until age 18. I had the typical T4-L4 fusion that scoli patients all got back then. Since it wasn't treated early, they couldn't do a lot of correction, and I still had a severe curve after surgery, though it helped my pain levels. Then I developed osteoporosis in my early 40's. That, along with the strong sidewards pull from my not-very-corrected scoliosis, caused the rest of my lower spine to break down. I was in excrutiating pain and could no longer do the regular activities of daily life. I saw an orthopedic surgeon who sent me for PT (which made it worse), CT scan, and bone scan, and then gave up on me. He just had no clue what to do with me. He had never seen a back like mine. But he did refer me to another orthopedic surgeon in another group. The new doctor is my hero! He figured out how to place hardware on my whacky spine and recommended doing that and fusing the rest of the way down. 30 years after the first fusion, I had a second one, this time a 360, going in from both the front and back. He went up to T10 and shored everything up and down to the Sacrum. By the time of my surgery, I had lost 3 inches in height. He only got me back about 3/4 inch, but at least now I won't lose any more.

It was a good choice for me. The excrutiating pain is gone, but I have to be honest and tell you that this drastic long fusion, 14 vertebrae now, has also caused new pain that I will have for the rest of my life. But the new pain is more easily controlled with pain meds. I'm much better off now, even though I still hurt everyday and am quite limited in movement. I will not work again, unless I can find something I can do for a couple of hours a day from home. I'm working on that. I'm waiting to hear if I will be approved for disability.

This is a hard surgery with a long recovery. Recovery will be measured in months, not weeks. It can take a full year or longer to completely recover. But if I had to make the decision over again, knowing now what the recovery is like, I would still do it. You take your pain meds, rest as much as you can, and take it a day at a time. Prepare as much as you can ahead of time, and you'll make your recovery easier. Like Pepper said, read that sticky at the top called "post surgery tips." It has a ton of great suggestions. My top suggestions: get a satiny type bottom sheet and slippery pj's. That will make turning in bed so much less painful, as you won't have to fight friction or shift your weight. You can just slide. Put a plastic trash bag on the passenger seat of your car for the ride home from the hospital for the same reason, so you can slide in and out of the car with less pain. Put a large ziplock bag in there, too, in case you get nauseous on the way home. If you have to throw up, you can just zip in the mess and no one will have to clean up anything. And get yourself a good quality grabber tool. It will be your best friend for a long time after surgery, as you won't be allowed to bend, lift, or twist. There are lots of other great tips on that thread, but the satiny sheets and grabber tool were the ones that were the biggest help for me. I could write more tips, but then I would have to publish this as a novel, so I'll just urge you to read the sticky.

Do you have a date yet for your surgery? What hospital will you be at?

Ahhh, now I'm having sweet memories of Bucks County, that we miss so much. Panther Playground, Saturday mornings at the Farmer's market, the best thrift shop I've ever found (the S.A. at the old Triangle Hardware -- yeah, I'm a thrift shop junkie! ), Peace Valley Park, Lake Nockamixon...

Theresa, I hope it goes well for you. If you have other questions, we're not doctors, but we've all got back experiences and will try to help you as best we can.

I wish you the best!
Emily

 
Old 02-12-2008, 06:44 AM   #4
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Re: Newbie on Board

Hi theresa and welcome to our family.

I am scheduled to have the anterior and posterior surgery at the same time like you i have heard all good things about it.
Emily really helps alot Blueatlas. I had a fusion 5 years ago that never took and my screws are broken. They want to do this to do a double fusion in hopes that it takes this time.

Any other questions if i can i would be glad to answer.

Oh and my doctor kept telling me it all looked good and i didnt find out the fusion never took until we saw the screws were broke.

 
Old 02-13-2008, 04:22 AM   #5
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zig2be HB User
Re: Newbie on Board

TMV (created a shorter version of your user name- easier for me to remember & I hope you don't mind.)

I just wanted to say thank you for the warm welcome. It so refreshing to know that there are people out there who understand what I/we are going thru.

I don't know when the surgery will be because my husband and I had so many questions for just us two to figure out. Most financial. Go figure. I just got a new job managing a pool company and we really don't start until end of March beginning of April. Then I get laid off some time between Thanksgiving and Christmas all depends on how much paperwork needs to be done at the end of the year. I wanted to try and wait till the layoff. But as I am typing this, I have only gotten maybe three hours sleep. Pain is that unbearable and the meds aren't working. Sometimes they do and then like when it rains, snow (got about 3 inches from yesterday am till now and now it's all ice and rainy) and this kind of weather really makes the pain worse. So anyhow, I went and talked to my new boss about all of this and he wants me to do it asap. And thinking about it so do I. I ran another pool company for 10+ years and my new boss was one of our subcontractors, so I have known him for many years which is great because you are not starting a new job not knowing anything. Plus are friends and my job position is secure till I can come back.

OK, now that all gave me carpel tunnel (spelling is ?) LOL I do tend to type much because I feel that there is so much in my brain and no one to talk to because I am home pretty much all the time by myself. My kids (16 girl & 13 boy) are at my house every other week. My ex lives down the street from me (nice-not) so we share 50-50custody. So every other week I have company when they are not trying kill one another (got to love the teenage years- lucky I am young enough to remember and I know my brother and me were always at it)

Back on track, I have to wait a week for the transcriptionist to type up the visit and then the financial lady to get back to me with the out of pocket money.

I am going to make a new thread on this so look for it. I want to know how someone can afford the out of pocket money. I was told $40k to $100k. I am an average Joe, Joette, who is living on one paycheck now with nothing else. I cannot afford this. I have insurance with a rider or another back up plan but still there is now way I can afford this. I know Dr. Boachie is worth every cent. Believe me I checked out his credentials and he is one of the best in the world. Bedside manner is great. He tells it like it is but in a calm way. I like a doc who tells it like it is and not BS me or just say there is nothing we can do like what was happening to me before.

So I am ready to go now and have this done. But I am so scared. I handled alot of other surgeries but this one scares me to death. And I have a big problem with anxiety as it is. But to get rid of the pain I will do it and I better be well medicated before I go in that's all I have to say.

ok you are probably tired of me. And sorry for the novel. I again I just want to thank you for the warm welcome and your patience reading this. I just have so much bottled up inside me with no one to talk to who will understand and not charge me $180 per 45 mins. LOL.

I hope all goes well with you and will say prayers as well. When and where are you having yours done? How do you feel about all of this, if I may ask? Just wondering maybe you have some ideas on not to dwell cause that is what I do best. No dwelling today, I have to try and finish my taxes....another pain in the back. HAHA

I hope to chat with you soon. Again thanks!

Theresa
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Thank you and have a great day!
T.

 
Old 02-13-2008, 04:57 AM   #6
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zig2be HB User
Re: Newbie on Board

Emily,

Thanks so much for the warm welcome. I am sending thank you to all the people who posted me. It's nice to know that there is a person from the old neighborhood. I am actually in Milford Square but the post office will be closing in the next few years and it will be all Quakertown. You would not believe all of the changes that have gone on here. How long has it been since you have been up this way? I will have to tell you that the roads are awful with traffic. It used to take me 5 mins to go thru town now it takes at least 20. God's honest truth. So if there is a back road I take it. Always stay off of 309.

I don't know when the surgery will be (see my post to TMVincent30) due to so many questions I have with my husband. Like are we going to make it on 1 salary. I am going to apply for Disability but I heard that takes forever. I was on unemployment because myh profession is seasonal (I am a office manager for a pool company so I have my winters off) I was going to try and wait till the end of this year and season but my boss told me to do it now. He's right and I still have time to get better before the season starts. And I must heal quickly. LOL. I have only been home for a few months and feel like I am going to turn in to Jack Nicholson in the Shinning. Herrrrrrrrrre's Theresa with the red rum written on my way. Too Funny! I hate being laid off and feeling like this. The meds don't work half the time or they work too good and I am stuptified (a word I created (maybe) meaning stoned, drulling, and loosing days. That actually happend to me I lost 3 days. I swore to my son that it would never happen again. It was one of my regular ortho who did this. Last time I saw him again.

So anyway I am having the surgery done up in New York at the Hospital for Specialized Surgeries (72nd ST) Talk about a nice area. It's about 2 hours away. Depending on who's driving. Less for me. But I am not rushing for this that is for sure.

I am so scared to death to have this done. I already have anxiety problems and this dwelling and trying to get all your ducks in a row type of thing is driving me crazy. Oh how I could scream. It is nice to finally know that you and everyone else on this forum know what I am feeling and talking about. No one understands here and I have so much bottled up inside me about this that it is making me crazy even though I am not. Depressed and Anxious yes. Not crazy.

I wrote a list of things that I want to accompolish this week try to anyway, just so I am busy and not dwelling. 1st on the list is finishing up our taxes. That defenitly will keep my mind off this that is for sure. Ah another stresser, got to love it.

Thank you so much for all the good tips, defenitly will use them that is for sure. Oh by the way, love that thrift shop two. Weds are the best days to go because everything is half of the price. Nice. Our motto here is "If its free its for me" Must be the water because everyone is like that. Where are you in VA.? I was born in Mannassas and lived there for about a year (Marine brat till age 5 in reality but Not in heart)

Ok going to go kids need to get off to school and I am going to take a nap. This 3-5 hr sleep is killing me.

I really hope to talk to you again and thanks for the warm welcome. I really appreciated it.
Theresa
__________________
Thank you and have a great day!
T.

 
Old 02-13-2008, 05:06 AM   #7
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Re: Newbie on Board

Thats fine if you use a short version of my name. Iam scared about the 360 yea but i have heard good things about the outcome that i like and fusing it both was will hopefully give it a solid fusion.

I could not afford it that is why i am going to a teaching university that i drive 3 and a half hours to get to. They told me the surgery would cost that much also. I dont like that it takes longer than a regular one but they are very god and spend alot of time explaining things i dont understand.

You can write a novel if you want I/We are always here to listen to whatever you feel like to vent , cry , or whatever.

Let me know if you want to know more.
Tina

 
Old 02-13-2008, 05:33 AM   #8
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Re: Newbie on Board

Hi Pepper!

Thank you for the warm welcome. I have been thanking everyone who posted to me. I have never felt the "love" like this. It is overwelming in a wonderful way. I have read your post several times thinking about what you said and you are right- Let it go, and that is what I have been doing to the best of my ability. I am trying not to really speak about this because as you said no one who hasn't been in this position will understand. And you are 100%. I read this quote a few times and just really remembered it when I read your post to me. It goes like this "A how are you (doing) is a greeting not the time to list your compaints" something like that and how true that it is. I had to stop (thiswas years ago) saying living when people asked me How was I doing. Now it's I am doing great no matter what. Death bed and all I am doing great.
Thank you for putting me back to reality mentally. As I have said to other people who posted me was that I have so much bottled up and no one to talk to because I am basically alone most of the time. My ex-husband and I share 50-50 custody of our two children, I mean teenagers, my daughter is 16 and my son is 13, the scoliosis skipped this generation. So I have my kids one week and he has them the next. He lives down the street from me (way too close) so that is the only way this works. For finding other people to help me out when this gets done is going to be calling in favors and if that is what it takes so be it. I stinks though because my best friend moved to LA. Talking to her last night and told her she had to move back up here to take care of me. She would if she could. We would always help out one another. I miss that.

So what I did early this am because now I am only sleeping 3-5 hours, was to make a list of things I need to complete, either today (not happening) by the end of the week (hopefully) but definetly by the time I have surgery. I am one of those who has to have all my ducks in a row. In my eyes my world does not exist unless I am in it. Which usually means if you want something done you have to do it your self. Stinks but that's how it is and soon I will not need a man to repair something because I am becoming quite the "Tim the Toolman". I actually don't mind it. I feel good knowing I fixed that all by myself. Pride something I need a little bit along with self confidence. A little lacking in that area.

I am taking everything you said and going to instill some of the ideas you had. I have a white board that I could do the scale thing. It's worth trying and then maybe someone will get a clue. Wait and see I guess.

Well I must go if you read all of the other replies I have done this am you would be tired just as I am now. I am going to try and nap for a bit then hit the list. Taxes first. Now that is what you call a distraction wouldn't you say.

Thanks again for the warm welcome and all the tips. I am "feeling the love" here and it's nice to know that there is someone out there who understands. Thanks again!

I hope to talk to you soon!

Theresa
__________________
Thank you and have a great day!
T.

 
Old 02-13-2008, 06:07 AM   #9
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Re: Newbie on Board

TMV,

Thanks for the understanding regarding my novel. The more i Participate hopefully the short version will come out. For now I might have to rant and rave for a bit till I get this out of my system.

I too am going to a teaching hospital in NY and it's about 2 hours away from where i live. I am going to call and see when the next available date would be for me to have this done. Then go from there. I am one of those who do not like suprises. I need everything up front so I know what I am dealing with. And in doing some research on this, I am still scared to death. Have to do the breathing thing to reduce the anxiety. All I know they better have good drugs. Sorry if this might be offensive to the moderator but it is the truth. I firmly believe and have proven that the way you go under anthesia is the way you will come out. So if I am having a panic attack going under that is the way I will wake with. And I don't want that to happen. Thinking about it makes me itchy and nervous. It's tax time something else to dwell on. Yikes!LOL

Thanks for listening (reading) and we will be keeping in touch!
Theresa
__________________
Thank you and have a great day!
T.

 
Old 02-14-2008, 12:49 PM   #10
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Re: Newbie on Board

Hi Theresa,
We left in 2001. My husband hates Richmond because of all the development and traffic. Maybe he'll like it better once he hears what 309 has become!

I hope you have a realistic picture of what the recovery will be like from a fusion surgery. If you're managing other people and don't have to do actual physical labor on the pools yourself, you might be okay. But if you have to actually get down in there yourself, I think it's unrealistic to think you'll be able to do that before at least 4-6 months post-op, if not longer. I'm not trying to scare you. I know only too well what a financial toll this surgery can take, not just the medical bills, but not being able to work. I'm justs trying to make sure you know what a huge surgery this is, and how limited you'll be for quite some time as you heal. If you want to apply for disability, go for it, but just know that it's tough to get. It can take 3-4 years. Almost everyone gets turned down the first time. I just got my first denial letter yesterday. My doctor told me today not to take it personally and that anyone can see that there's obviously no way I'll be able to ever work, to not give up, keep appealing, etc. But it's a long road to hoe. And you have to be out of work for at least 5 months to qualify, if I understand that right. I think you can apply before the 5 months, but then you wouldn't be paid for the first 5 months you were found to be disabled.

I hope you're happy to be getting the good education you'll get here from those who have already been where you are now. You don't regret finding us yet, do you? Really, this board got me through a very hard time, facing the need for surgery, preparing for it, and going through the recovery. I'm so grateful for the many people who helped me, some of whom are still here, but many of whom have gotten their lives back and never come on anymore. I'm glad for them! I hope you'll be able to say, too, that you've gotten your life back!

Take care. Wavin' at you up there in Bucks County
Emily

 
Old 02-14-2008, 01:04 PM   #11
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Re: Newbie on Board

Hello Theresa ~

I just wanted to mention that there are a number of people on the board who had surgery (fusion) at HSS...one is LAF who just got out a couple days ago, and another is Moldova who had a multi-level fusion about 2 months ago.

If you have specific questions about the hospital, you can ask them.

I had PLIF at L4-5 5 weeks ago and am busy recovering. Things are going well, but as everyone says, it is a BIG surgey.

xx MM

 
Old 02-14-2008, 01:26 PM   #12
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Re: Newbie on Board

Thanks so much for the info, I will ask them questions. But you, you just had surgery and you are in high spirits. Bless you on that one. Right now I am not having a good day. Pain is awful and so is the home life especially when we are now a 1 person income family. The stress is so bad that along with the pain I have the most awful gut ache you can imagine. I am supposed to see my pain management doc next week and now we don't have the money for me to go. I just feel like everything is my fault. and I am the cause of all of our problems. Sorry I just need to vent. Of course a lot of money goes for me regarding docs and Rx's. But aren't I worth all of the money in the world to be fixed. That's how my husband makes me feel.

So when I get my ALIF & PLIF done I will be in the hospital for 10 days to 2 weeks and then home for a month. That's what Dr. B said. I can take that. But on the other hand I can't take the fact that our situation is not going to change and I am going to feel worse and then legthening my recovery. I have been out of work with this pain since May 2007 and I hate it. I want to work. I need my own money and to contribute to our household needs. I need to be in control that is my problem and right now I'm not and boy do I get reminded of that.

Oh, this is so crazy. I am sorry I dumped this on you. I can't stop when my fingers are typing they go by themselves. I just don't know what to do.

Any suggestions? I am up for anything right now.
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T.

 
Old 02-14-2008, 01:48 PM   #13
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Re: Newbie on Board

If you've been out of work that long, I'd go ahead and file for disability. If you end up being able to work again, then you just stop getting it, or don't keep appealing the process.

I sure know those feelings of helplessness and guilt! I'm very much struggling with that, too! My last fusion was Sept. 2006 and a hardware removal in Sept. 2007, so it's been over a year since my "big" surgery. I still have pain every day, but I'm so much better off. A lot of people come out of this surgery with no pain after they've healed, and really get their lives back. It really depends on your problem and your body's ability to heal and adapt. Everyone who goes through this needs to be careful forever, but many are able to get back into their careers and hobbies. That's not me, though. I didn't think it would be. But I'm struggling now with the acceptance that this is my life. I wake up in the morning and think about what I need to get done, then wonder how much pain I'll be in THIS time around. My GP today urged me to up my pain meds and also put me on Cymbalta. I've pushed the depression to the back for so long, but it's finally caught up with me. This chronic pain is just so tough! In the last month, I don't know how many times I've woken up in the morning and just laid there and started crying, thinking about how this is what it will be forever for me. No pretty clothes, no going to the movies, no getting back into my hobbies, no job, just a stiff board-like body that makes everything hard to do.

Okay, I've gotta stop. Now I've dumped back on you! Sorry. I didn't mean for all that to come out. But I guess people here understand.

Blessings,
Emily

 
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