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ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/7/2008 4:35 PM (GMT -7)   
Can I just cry on your shoulder for a minute tonight? I am so tired and have been hurting so much, and last week a routine doctor's visit revealed "nodules" on my thyroid! I hoped the nurse would tell me it was nothing to worry about, but a blood test and ultrasound later I find myself being referred to an endocrinologist for "further evaluation." I just want to sit and cry. I asked my PCP (he's the nice one - who actually tries to help me with my back) if this could somehow explain any little part of my back problems - you know, at least then I'd have an answer to something... But he said there wasn't any way it could be related. cry

And I finally had to personally drive my records and scans from here to the neuro (an hour away) because they kept saying they "couldn't get" the records, but the hospital told me they had never even requested them! I had to practically badger them into giving me a follow-up appointment. But by the time they finally called me back they "couldn't fit me in" until DECEMBER! That's 3 months since I sat in his office and he told me he'd look at my records and get "right" back to me with a treatment plan or referral to someone who would help me. Right. I should have known better than to hope. And now this.

I'm just having trouble finding the silver lining tonight.
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/7/2008 5:23 PM (GMT -7)   
{{{{{{{ Ry }}}}}}}}}

Use my shoulder for as long as you like, friend.

Once again, another story that makes me want to pull my hair out. I try to understand all doctors have to manage...but sometimes it's just impossible to reconcile how we're treated. shakehead

I'm so sorry you're going through all this. Come back and vent or cry or whatever anytime!

PaLady

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/7/2008 6:11 PM (GMT -7)   
Ry - I'm so sorry you are having a rough time cry   I understand exactly what you meant when you said you are having a hard time finding the silver lining...I've had many a moment like that lately.
 
We are here for you! --Tina

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 11/7/2008 6:35 PM (GMT -7)   
I'm so sorry for all that you are going through. I can only imagine how terrifying it is to hear that about your thyroid. I'm praying for the best for you and hope you find some answers and relief soon!

kara487
Veteran Member


Date Joined Mar 2008
Total Posts : 637
   Posted 11/8/2008 4:21 AM (GMT -7)   
Ry,I am sorry your having a bad time. You are in my prayers.
Lortab,ambien,elavil,reglan , neurontin,zyrtec and soma.
 
spinal conditions: Scolosis,herniated discs,spinal blockage,Spinal stenosis,bursitis ,Fibro,and arthritis


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 11/8/2008 8:11 PM (GMT -7)   
Oh, Ry, I'm so sorry things are so rough for you right now.

Maybe you can get on a waiting list for cancellations so you don't have to wait until December. Sometimes that can work out. Maybe your PCP could even help you out with that.

As far as a silver lining, getting your thyroid treated might help with being tired. Thyroid probs (even very minor ones) can cause fatigue and depression and changes in appetite. Maybe you will feel better & have more energy to try to deal with your back pain if you're not having to deal with thyroid issues as well. I know that's probably not much consolation, but maybe it will help a little bit. I hope so. sad


I make them give me a date to put on my calendar instead of saying "right away" or "as soon as possible" because those descriptions are worthless. When I have specific dates, I've found following up on scheduling, getting records or making sure test results are reviewed are easy tasks to outsource to friends & family. They're always asking me how they can help, but turn down just about everything I suggest except that -- maybe b/c it's an easy success for them to just make a few (or several) angry phone calls demanding action & then to end up getting their way. I don't really care their reasons why, I'm just glad for a bit of a break.
Maybe someone can help you out a little bit with that. It always feels better when we have an ally even in the smallest things, doesn't it?

Anyways, I'll be praying that you can get in sooner for your follow-ups & get some much needed answers to what maybe seems like endless questions and also that you can get some help with things to help you conserve some energy. I really do hope you find some answers so you can start feeling better really soon.

take care,
frances

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/9/2008 10:23 AM (GMT -7)   
Thanks so much to each and every one of you. I knew this family would be here for me. Thanks for just letting me whine a bit. I haven't told anyone else about the thyroid stuff. My "friends" disappeared a while back, after chastising me because I wouldn't just "get over this back pain stuff already." And my family, well most of them don't get it either. And for the few who really try to be there for me... I guess I just can't bring myself to tell them I have yet another health problem. Truth be told I'm probably sort of afraid this would be the thing that would put them over the edge and into the "get over it already" group. It is such a comfort to know that I can come here and talk about this to people who really understand what I am going through. I just can't thank you enough.

As horrible as it sounds, there is a tiny part of me that thinks "well if I have cancer, at least then maybe my PM will decide I deserve to have pain relief." There's another thread here about pancreatitis, and if you read it you saw that my father suffers from the disease. Over the past seven years, there have been several times when my father has taken me to the ER b/c of a flare with my back and then other times when I've taken him to the same ER b/c of a flare with his pancreas. I have been absolutely appalled at the difference in treatment. And this is at an ER that I consider to be very good.

The hospital really does seem to treat me pretty well. But each time I end up in the ER I have to fight the "frequent-flyer" label and it is really a battle to get treated. Each time I have to re-tell the same medical history despite the fact that they KNOW me. Each time, I am made to feel like I am being a wimp and melodramatic and that if I ask for more medicine that what they give me I am drug-seeking. Each time I am under-medicated and my father is forced to advocate on my behalf and INSIST that they give me enough medication to treat the pain.

But the last time I took my father to the ER for a flare of his pancreatitis, it was a different story. We went to the ER b/c he seemed "off" and felt nauseous and uncomfortable, and it was after hours at the GI doctor's office. They told us to go to the ER to get blood work done. My point is we did not go there b/c he was in severe pain. When they went through the H&P they asked him how he would rate his pain. He said "oh, maybe a 2." They pressed on his belly and asked if it hurt. He said "not really." They asked him if he felt like he needed pain medicine. He said "no." Then they got the blood work back. It showed that he was having a flare of pancreatitis. At that point, a doctor came into the room and said he needed to be admitted and asked him again to rate his pain. Again, he said "2. doesn't really hurt much." And you know what the doctor said??? mad "OK, we are going to get you an IV and the nurse will give you some morphine. Let us know if it doesn't help that pain." mad WHAT?!?

It struck me that they really didn't care what we SAID. His illness has a NAME. According to all the research, pancreatitis hurts. And yes, there have been times when my father really did hurt. A lot. And he needed pain medicine then. But on that day at that moment, he didn't need it. He wasn't asking for it. He was fine. But b/c his illness had a NAME, the doctors believed he deserved to be pain-free. They believed that 2 was too high on the pain scale for him. I only go to the ER when my pain is at a 10 and has been for at least a day or two or else when I literally cannot sit up or walk (at which point my pain is also always at a 10). Even then, I have to fight, beg, for pain relief. And usually their "goal" is to get me down to a 6 or 7. By their standards, not mine. That is to say, they try to get my heart rate and breathing back to normal and the cold sweats to stop. Never mind that being very still can accomplish those things w/o any pain relief. I've learned to do that much. But see, my pain doesn't come from a NAMED disease. So it seems that the doctors (and my "friends" and sometimes my family) do not consider it legitimate.

I don't want to have cancer. I don't want to have thyroid problems. I just want to have a day, a moment even, when I don't hurt so much I can hardly think straight. I guess all of that just came rushing to the surface when I got this news from the doctor. And I hate that I feel that way. I am ashamed that I feel that way. It makes me disappointed in myself that I can't rise above this pain. And if I am already drowning with just the back stuff, how can I deal with one more problem? I'm sure I'll figure it out. Having all of you here really helps. Thanks again. Sorry for the ramble here...

Ry

Post Edited (ryand) : 11/9/2008 10:26:30 AM (GMT-7)


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 11/9/2008 11:09 AM (GMT -7)   
Ry,

I just wanted to tell you that twenty years ago, my best friend's husband was diagnosed with cancer of the thyroid. It really threw them for a loop and of course my friend was devistated that she was going to lose her husband. Well, he had surgery and he has been cancer free all this time. Don't get ahead of yourself. Wait and see what happens and believe that all good things are possible. Meanwhile, I will pray for you, my friend.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/9/2008 1:53 PM (GMT -7)   
Ry,
Never, EVER be concerned that you are whining, venting, rambling, whatever when you post here! You and I and I'm sure some others understand what it's like to be totally alone, and we need a place to come to where we can say things we can't say anywhere else. And a place where there is at least someone on the other end of a computer somewhere to listen. Those of us who live alone, with few family and even fewer friends, need this even more than others may realize.

I know for me even having a hangnail anymore is enough to send me over the edge. It's like I can't take one more thing wrong with me, wrong with my life. And heaven forbid, having to add more doctors to the list already there, more tests, procedures, etc. Even the thought of it is overwhelming. And yet as you say, something that has a "name" would at least eliminate the need to justify our need for chronic pain management. We wouldn't have to explain ourselves over and over and over to people who don't even understand.

I don't know if I'm making any sense because I'm starting to ramble, but at least we can ramble together!

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 11/9/2008 7:08 PM (GMT -7)   
Ry,

I'm so sorry to hear about your horrible experiences with the ER. Vent all you want! That is what we are all here for! I know what it is like to feel like people do not believe you because your pain has no "name," and it is awful. I'm fortunate to have found some doctors recently who are on my side. You would think that all doctors would realize that we don't always have all the answers. Just because we can't put a name to an illness doesn't mean that the person isn't sick, or that the person doesn't have pain. It is so frustrating. Of course there are people out there who take advantage of this, but for those of us who truly suffer from un-named illness, it makes it that much harder to find help. So continue to let out your frustrations here, we are listening, and we care!

Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 11/10/2008 8:10 AM (GMT -7)   
Oh Ry, vent all you need to...don't jump the gun yet, it might not be cancer. It could be any number of things
so just hang in there and see what the endocrinologist has to say, I'll be saying a prayer for you.
I see an endocrinologist as I have an enlarged pituitary gland. You'll go through a lot of bloodwork
first and it's not easy, but there is hope. Hang on to that hope, we'll be with you every step of the way,
so hold my hand and grab it tight if you need too, we'll get you through this and be here for you on those bad
days too.
So keep us posted and lots of soft hugz and prayers ...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 11/10/2008 12:15 PM (GMT -7)   
Ry,
You're always welcome to cry here & my sympathies are with you. cry

I'm kinda appalled though that you have to keep going back to the ER all the time. What's the deal with your PM? After a few visits to the hospital, my PM got sick of visiting me there & wrote me a prescription for the same meds they were giving me in the hospital. They're crazy strong so I only use them when I would otherwise go to the ER, but I imagine you are just as capable as being responsible with the meds as I am. I usually go through 30 of them over 4-6 months, but even taking them so sparsely it has kept me out of the ER & hospital.
Maybe you can check with your PM about getting some "emergency" medicine so you don't have to keep dealing with all the worthless people in the hospital. If not, I would look into getting a new PM. That is insane that he thinks it's okay for you to have to keep making trips back to the hospital.

I don't know, I just feel very frustrated for you & wish I could do more to help, but I do wish you the best with all your tests & treatments.

peace,
frances

ladyred
Regular Member


Date Joined Jul 2008
Total Posts : 191
   Posted 11/10/2008 7:49 PM (GMT -7)   

Dear Ry, I am sorry to hear all that you are going through.  It sucks! and not many understand that but we all do and we all care and are here if you need anything from us even if its to vent!

As far as the throid goes, ok here goes worse case serneio is its cancer, good news is that it doesnt move to any other parts of the body and it is the least of all cancers, very high sucess rate and cure rate.  If its not cancer then still very treatable and maybe with all else going on it will make you feel better if they get it sorted out.  Thyrod can make you tried and low energy and just all round yuck.  I know that this might not make you feel any better but at the least you know its very managable either way and that is a good thing.

I really hope that you are ok and you find that your test come back normal and it was just a false neg test, there are know to be from time to time.

I wish so much I lived by you I would love to come over and just give you a hug and a shoulder to cry on and support you as much as I could.

Take care and I will be praying for you Ry

Lara

 


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/10/2008 8:28 PM (GMT -7)   
Oh, my dear, sweet friends! Thank you so much for your encouragement. You have been a balm to my soul today. :-)

PaLady: You make perfect sense. I know you "hear" me completely because of everything we have in common. It's nice to know I have someone to ramble with! tongue

skeye: Thank you for your words too. I am so glad that you have found a good PM. It gives me a little hope that maybe the rest of us will eventually land one too.

Chartreux: Thanks for your offer of the hand to hold. I'll try not to squeeze too hard! shocked And don't worry too much...I'm not pacing the floor worried about cancer or anything. It's just one of the niggles in the back of my mind, ya know? It helps to hear some of the procedural stuff that you have experienced, so I want to thank you for sharing that.

Frances: Thanks for your encouragement, too. I am with you on thinking my PM is a loser. Unfortunately, she's the latest in a string of docs I've seen who have either been useless or just flat out said they couldn't help. I've been referred up the food chain and out of the city so that now I am seeing specialists who are over an hour's drive away. Consequently, my going to the ER is not even a blip on this PMs radar. They don't call her - they call my PCP (who is an absolute savior to me through all this!). So he deals with the serious flares and then I have to go back to the PM who promptly takes me off all the pain medication they hospital just put me back on. Of course then it is somewhat inevitable that I will be right back in the hospital before too terribly long. Recently I seem to be making it about 2-3 months between visits. Vicious cycle. I'd give my right arm to have a PM with an open mind like yours seems to have.

Lara: Thank you so much, friend. I wouldn't mind a hug right now either, and the offer means the world to me. I appreciate your prayers. I got an appointment scheduled with the endocrinologist for next week, so at least I won't have to wait very long to find out more. The good news (?) is that my blood work is actually normal - go figure. They are concerned because I have a couple of "suspicious looking" moderate sized nodules on the right lobe of the thyroid. I think the thing I am most afraid of right at the moment is that they will decide they need to do the needle biopsy (my PCP said this was likely) and ya know, I'm just plain tired of pain! I don't want them to stick a needle in my neck. I'm guessing there'd be no numbing involved - that it would be more like my epidural experience, and that was just not a good thing. *sigh* OK, I need to just not let myself think about that, right? eyes

Thank you all so much. Oh, what would I ever do without you? I am in a lot of pain with the back this week, and I've decided that since I'm waiting on the neuro and don't see the PM until after that, well, I'm just going to cave and call my PCP and ask him to put me on some long acting meds again for a few weeks. I just need a break for a little while. I need to be able to sleep again, and right now the pain just makes it impossible. We'll see how it goes. I'll let you all know what I find out next week at the endocrinologist.

Ry

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 11/10/2008 8:51 PM (GMT -7)   
Ry -

Is there any way that you could just see you PCP for your pain management, since he is much more understanding & willing to try new routes? I know some PCP's will take over the pain management of people who, such as you, have not had much success with their PM or didn't get along with them, etc. Just a thought. At least maybe your PCP could take over temporarily so that you could look for a new PM?

My thoughts are with you. I hope you get some relief and some rest!

All my best,
Skeye

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 11/10/2008 9:29 PM (GMT -7)   
Ry,
The two people I know got local for their thyroid biopsies. If the doc doing yours won't numb it, maybe you can get a script (or better yet, a sample) of a topical numbing gel from your PCP. There are several out on the market -- most common ones are Lidoderm patches and Voltaren gel. The Volatren is new to the market & a lot of offices got free samples of the stuff. I use it regularly & it's great. Local would be best, but if they won't do that at least a topical numbing agent would make it somewhat less painful & maybe help cut down on some of the worry about that. ;)

frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/10/2008 10:26 PM (GMT -7)   
Ry,
I'm with Frances about being proactive to get some numbing agents if you need a biopsy. Maybe you could call the endo's office and ask how they do the procedure, if it's needed. And explain you're a chronic pain patient and really would like some topical or local anethsthetic if that's in any way possible. That would ease your anxiety in that regard.

And yes, call that great PCP of yours and get back on the oxy or something. Next step in all this for you is getting better pm. But then who am I to talk! I'm dragging my feet, too.

PaLady
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