What do I have for options??

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merrygirl
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   Posted 1/4/2010 10:32 AM (GMT -7)   
I have noticed the last 2 months that my pain levels are higher and that I have been unhappy with pain control. I have been on 50mcg fentanyl and 15 mg oxycodone and a muscle relaxer for about 7 months.

I tried oxycontin before and didnt notice anything special if i recall corectly.

I feel discouraged and like I have no viable options left. I see my pm doc on the 16th. I havent tried many meds but already feel like my options are limited.

I am scared of my pm docs and afraid if I complain they will think i am a drug addict, or looking for drugs and i am afraid they will leave me with nothing at all. THey have always been helpful and nice but you know how it is.

I just want to be comfortable and be able to do things. I went to the grocery store now I feel like I am going to die.

I am just wondering what are some other options? can anyone help me?

thanks
melissa
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


merrygirl
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   Posted 1/4/2010 10:41 AM (GMT -7)   
I should also say that I take cymbalta. I have Lyme disease, diabetes, and Fibro/CFS type pain as well as joint pain and bulging discs. I also have nerve pain, but I cant take lyrica, or neurontin type drugs.

I am ready to give up :(
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 1/4/2010 10:45 AM (GMT -7)   
Merrygirl,
 
First all of all stop beating yourself up. Its not your fault that you are not responding well to your meds, this happens all the time to people. Don't get discouraged, you have a long way to go.
 
Why not make a pain diary starting now and let your dr see it on the 16th. This will give him/her an idea as to what is going on. When you see your dr are you questioned about how well your pain is being controlled? If so, then this is when you tell the dr what is going on. If not, then just be upfront and honest and tell your dr things are not working well as well as they were. Ask the dr what she/he thinks is the next step. By doing this you are not asking for anything except for help, thats why they are there. This does not make you look like a drug seeker.
 
Unless you tell the dr things are not working they have no way of knowing so its up to you. Take care and good luck with the dr on the 16th.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
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   Posted 1/4/2010 12:28 PM (GMT -7)   
    Merry, I agree with Stray here. It takes quite a bit of time to find the right meds for your pain level, and then it may always need adjusted from time to time as your body builds up a tolerance to it. My only advice would be to stay as low as you possibly can on the dosage, and I really don't think it is the idea to get rid of all your pain. Infact, I would think it would be dangerous to do that. You want to stay in tune with your body as much as possible, and the problem with too much pain meds, is that it may be masking other problems, that you will never have a chance to check out until it is too late. So be careful my friend.
 
    Michael

golitho
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   Posted 1/4/2010 1:24 PM (GMT -7)   
Hi Merry,
I think if your quality of life is suffering then you have a right to complain. The whole idea of pain management is to controll your pain so that you can have a manageable life, surely they will hear that the current plan is not working well enough for you.
 
The pain diary is a good idea, everyone here always talks about recording everything and I agree writing it all down gets a clear picture in your head about what it is you can and can't do. Then when you go in you feel like you have specific requests, I can't manage the shops on these meds is a clear message that they're not strong enough to give you the independence you need. So start that diary.
 
I also discovered by accident that complaining to my own local doctor carried more weight. She rang and spoke to my specialist who didn't seem to "hear" me when I'd seen her. Suddenly my specialist was all guns blazing and set me on a new course of treatment.
 
So don't go in asking for increases, go in asking for help as you can't manage your everyday life activities.
I'd be surprised if they don't respond positively.
 
Goodluck on the 16th, golitho

White Beard
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Date Joined Feb 2009
Total Posts : 3610
   Posted 1/4/2010 6:56 PM (GMT -7)   
merrygirl

You have gotten some really EXCELLENT advice! But first off I want to tell you a little known secret! You do not have to be scared of your Doctor, or afraid of talking to him/her! Your their boss they are working for YOU! But with that said remember, when you go to an Auto Mechanic or a Plumber you don't tell them how to do their job, you just tell them what problems your having, and then you let them do their thing and tell what they think the actual problem is and how they can fix it, sometimes there is more than one way to fix it and then you make the decision to either have them go ahead and fix it or not, and if there is a choice of fixes, on their advice you pick one of the ways they have to fix the problem, and then let them go ahead and do it! Is it not the same with Doctors? I think a majority of the time it is. They might have more education, but they are not Gods, and they are just people like you and me, doing a job that they chose to do, just like a Auto mechanic or a Plumber or a Teacher, or a Nurse, or anybody else in any other Profession! So don't be intimidated by your Doctor, just be honest and up front with him, let him know any and all the problems you are having with pain tell him what you can and can not do because of the pain and what you want to be able to do. Then let your Doctor do his job!


I understand your apprehension but melissa just be open and honest and above all be yourself and you will be fine!

Good Luck to You!

White Beard

fatherjohn
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   Posted 1/4/2010 8:23 PM (GMT -7)   
Merrygirl, I agree with Whitebeard regarding the relationship with your doctors. I think we are afraid that our doctors will stop treating us or lable us. Being honest with your doctor is the only way to go. That does not releive the fear or stress though. If necessary, take someone to your appointment to give you encouragement as you share how you feel. We all get tired of feeling the way we do. Thats why we come here. A great place to unwind. 

mrsm123
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Date Joined Dec 2007
Total Posts : 1228
   Posted 1/5/2010 5:50 AM (GMT -7)   
I have always taken the stance that the doctors work for me, I like WB's analogy about the mechanics or plumbers. He's exactly right, we do tell them what is wrong and they in turn tell us what they believe the problem is or how they think they can address it.
Melissa, you really haven't been on the spectrum of pain meds , in fact, you have been on very few of them, so there are a lot of choices out there to help manage the pain better.
SE is also right when he says that eliminating all of the pain is not the goal and should never be . The only way that is possible is for us to be able to go back to our pre-injury bodies, and that isn't going to happen, so the goal should be to manage the pain enough so that we can go out grocery shopping, do some moderate housework , be able to sit reasonably comfortably, and be able to work or an active member of our family.
I think you know what I mean .......if you can' t do those things, then your meds might need some tweaking to make it so that you can do those things.
Anyway, I hope that you feel more comfortable going in to talk to your PM about the levels of pain you are feeling and seeing if he will adjust your meds a bit.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/5/2010 8:34 AM (GMT -7)   
you guys are the best. I really appreciate the help and advice. I started antibotics for my skin infection and It has flared up my Lyme symptoms too. I have been writing in my pain journal. At least i feel like i am being proactive in my care.

thanks again guys.
hugs,
melissa
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/5/2010 2:06 PM (GMT -7)   
turns out my apointment is tomorrow! hopefully i will not have to suffer any more.

good thing for apt reminder calls!
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 1/5/2010 3:48 PM (GMT -7)   
Melissa,
You have been given great info., but the only thing I'd add is that medication is one of the ways to manage our pain, but most of us need to put a package of things together to manage it as well as possible. Seeing a pain psychologist or therapist could be very helpful. He/she can teach you strategies to use such as relaxation, and Cognitive Behavioral Therapy to help you learn how to manage your thoughts and emotions. While we may not be able to get rid of the pain entirely (maybe some people can, though, but not most of us) how we think about it is also important to our quality of life. We can let it take over, or we can make the choice to get the best medical treatment possible (including meds) and do activities that help us maintain some quality and meaning in our lives despite the pain. I know it's not easy - we all know that, but we do have some choices in the mix of it all, even though our first choice to have no pain is generally not in our control any longer.

Good luck tomorrow!

PaLady

straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 1/5/2010 4:43 PM (GMT -7)   
Merrygirl so glad you got the reminer call, wow, would have been bad to have missed the appt. My pain mgt dr told me the only to get someone totally our of pain that suffers CP would be to make a zombie out of them. We will never be pain free but we can get it more managable and have some quality life. Let us know how the appt goes.

merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/5/2010 5:00 PM (GMT -7)   
I do see a psychologist about every 2 weeks or so. he has been very helpful. the only thing i dont really do is exercise. I really have issues with it. I know I can so something, but mostly I walk to the bus stop at the end of my street 2 times a day. that has been t he most I can muster. I know I dont have to explain it to you guys, but if it hurts why do it, but I know it would be good for me if I could do warm h2o therapy in the future. With the fatigue and pain and a constant fever ( 3 and a half years now) its hard to get dressed most days.

I have done sleep studies, injections, massage when i can afford it.


I just dont know what to do with myself.

feeling depressed and defeated.


melissa
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/6/2010 11:19 AM (GMT -7)   
well i was completely let down today. At first the np was going to up my fentanyl or oxycodone. I was wanting to try the fentanyl increase. But after a certain number of visits you need to see the docotr who was a complete ass. HE said no changes and even mentioned that I might need a drug holiday due to hyperanalgesia??? whats that about? I was so upset I cried. I hate to let people get the best of me, but I am sick of hurting. Maybe I should just get off all these darn meds and tell that doc where to go. the np was upset to see me cry and I know she didnt agree with him, but you know how it is with jerks for docs.

then they told me that they think exercise is not good for fibro after all. DUH I could have told you that,.
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/6/2010 11:26 AM (GMT -7)   
Merrygirl, I am so very sorry what happened. But, I would suggest that you get in with a new PM dr ASAP. Get your PCP to make a referral to another one, do some shopping for a new one. Look, this happens all the time to us. Now, that you have seen this side of him, its time to move on and get a new PM dr. Don't consider oh well maybe the next time I see him he will be in a better mood, that is not going to happen, this is the time to advocate for yourself and get proper care. Try not to let this bring you down. Gentle Hugs coming your way.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/6/2010 11:27 AM (GMT -7)   
Oops forgot to ask, have you been tried on Lyrica for your Fibro pain? Over at the Fibro forum many are on it and getting some decent results.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/6/2010 11:43 AM (GMT -7)   
thanks for your support.
I have started to look around. I am not happy. If you are in such pain you wake up at 3-4 am everyday, gee I think I will STOP your pain meds. what part of that makes any sense? And I am mad because if I was a drug addict I would have no problems getting meds. But here I am take my meds EXACTLY as rxd and I get treated like this? no way. I know if this dumb doc wasnt there today I would be feeling a lot better.

grrrrrrrr.


oh I tried lyroca and it made me suicidal. no good for me!
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 1/6/2010 1:40 PM (GMT -7)   
He calls himself a pain managemennt doctor! How infuriating for you. No good at all. I agree with the others get another referral to someone else or get your local doctor to call them and talk to them. Doctor to doctor talks seem to carry so much more weight. Maybe that way your doctor can fight your corner so to speak.

Specialists seem to go off on their own tangents and seem incapable to actually listen at times (in my experience) The doctor to doctor method worked wonders for me. Just a thought anyway.

Sending you lots of healing thoughts and my best best wishes, golitho

prepackey
Regular Member


Date Joined Oct 2004
Total Posts : 183
   Posted 1/6/2010 3:31 PM (GMT -7)   
you guys just do not know how healthy you are, at least you have diagose on your self. i have been searching now for 15 yrs. OHUS did alot of testing on me and still no daigose. they even thought at one time that i had two differnt things going on! so i have been around and through so many dr.s at one time i just did not wanna go at all anymore. i do not think i have ever put the amount or name on my pill that i take mag-oxide 400 twice daily/ naproxen 500mg 1tablet 2 time daily gabapentin 400 mg take three capsule by mouth 3 times daily/ diclofenac 50mg twice daily/ amitripyline100mg 2daily,methadone10mg3timesdaily/ and i exercise at a local gym and ride a bike 4 miles. mondays, wendsdays, and fridays. this really works for me keeps the depression down and keeps my body in shape. so i hope you all have a ok day! love packey

Dagger
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   Posted 1/6/2010 4:40 PM (GMT -7)   
melissa, I can't believe your doc said exercise is not good for fibro. It has helped many of us improve our quality of life. The fibro and Lyme experts say that some exercise is essential for improving quality of life. While exercise may not be right for you at this time, a doctor saying it isn't good for fibro patients sounds wrong.

Are you getting any treatment for your Lyme Disease? If antibiotics cause your Lyme to flare, then antibiotics may still help you. I was on antibiotics for most of four years before I got to the point where I stayed the same whether I took them or not. My pain level was reduced a lot toward the end of treatment and I went from practically disabled to being able to have a decent (but drastically changed) life. Have you exhausted all your Lyme treatment options?

I hope things improve for you soon.

merrygirl
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Date Joined Jun 2007
Total Posts : 702
   Posted 1/6/2010 5:41 PM (GMT -7)   
prepackey- you said
"you guys just do not know how healthy you are, at least you have diagose on your self. "

I take offense to this. I am not sure if I am understanding this as you intended. I am not healthy and I dont think itis fair to say such things to sick people. I am 31 years old and take 16 meds.
This really isnt a contest and I am not trying to start problems, but this is the kind of thing that really ruffles my feathers. We are all struggling and suffer, so saying you are sicker than me or anyone else is not fair.

I am sorry that you have no diagnosis, but beleive me it doesnt always make thing easier. good luck to you and sorry if I misunderstood you.


Dagger- The np said that new research shows that exercise may not be as good when you have fibro. thats all she said. they have always pushed me to exercise and still want me to move about, but maybe too much isnt as good as they thought. I also realize that the antibiotics flared my lyme up so I too think that antibiotics are likely in order. I have "only" treated lyme for 2 years and I had been off abx for 6 months up to the skin infection and the current meds.

I have not exhausted all options yet. I was hoping that I was going to be off for a while. I think I was/still am in denial about still being sick with Lyme. As you know its very frustrating, debilitating and a very long road.

what helped you most with your Lyme?

thanks for your input, I really appreciate it.

melissa
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


White Beard
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Date Joined Feb 2009
Total Posts : 3610
   Posted 1/6/2010 7:40 PM (GMT -7)   
melissa

We are here for you, you know that! I am sorry for the way you were treated. Really though maybe you should be looking around for a new PM Doc! And the other thing is maybe you ought to be getting that Lyme treatment checked! You have allot going on, and it is a natural response to feel like you do, but you really do have friends here that really do support you, just hang in there! I really do wish you all the best!

White Beard

skeye
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Date Joined Mar 2008
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   Posted 1/6/2010 9:57 PM (GMT -7)   
Melissa,

I agree with what has been said: sounds like it is time for a new doctor. I as I just wrote on Donna's thread, it often takes going through many bad doctors before you find that one good one. I know exactly how you feel, feeling as if you are at the end of your rope. I've been through essentially every medication and injection used for pain with no relief. I've even been through a whole bunch of alternative medicine like homeopathy, acupuncture, and osteopathic manipulation, again with no luck. All of my doctors are scratching their heads. They, as well as several outside consults, all agree that there isn't anything left to try except this peripheral nerve stimulator that my insurance just denied. Other than that all that is left is to remove or kill the eye & there is a fairly strong possibility that even that won't help the pain. So for now this stimulator (assuming the insurance accepts one of my appeals) is my "last resort." Yes, medicine is advancing every day, and doubtless new treatments will come along in my lifetime & perhaps then I will find relief. But that could be 10, 20 years from now, or maybe even more. It is really scary to think about the prospect of living each day in excruciating pain with no relief whatsoever for years!

I'd suggest you get as many opinions as possible. Go see a PM at a big well-known teaching hospital for a consult. Speak with other Lyme doctors. Just don't give up! Even though I mentioned that I "only" have "one" option left, I haven't given up fighting. I'm constantly searching for new doctors or therapies which might be able to help me.

Are you or have you considered taking anti-depressants? I know you mentioned that you see a psychologist, and that is great. CP related depression effects so many of us (me included). The depression tends to make not only our outlook worse, but our pain worse as well. And in turn, our pain makes our depression worse. If you can't break the pain cycle, maybe you can at least break or prevent the depression. It's not always the easiest thing to do (I'm unfortunately just as resistant to anti-depressants as I am pain medications -- I'm currently taking 3 antidepressants and they make only a slight difference). But if you find a great psychiatrist who is knowledgeable about CP, they can do wonders for some.

One other thing: have you tried any alternative therapies? They don't work for everyone, but the make all the difference for others. It is amazing how differently our bodies function. Alternative therapies can be good stand-alone therapies for some, or supplemental therapies for others. You might want to look into things like homeopathy (I'd suggest seeing an MD-homeopath over a non-doctor homeopath), naturopathy, acupuncture, osteopathy/cranial-sacral therapy, chinese herbology, structured mediation. I'm a big believer in alternative medicines (although they didn't help me much. lucky me. I think I have the most stubborn, resistant body in the world). I have seen them do wonders for several people. These treatments can be somewhat expensive, since many don't take insurance, but they are definitely worth trying if you haven't already. MD-homeopaths, especially are very Lyme-literate. I think you'll find that many of these alternative practitioners (at least the MD-homeopaths, ND's, and OD's) are much more Lyme-literate than most physicians. It might be interesting just to have a consultation with one of these guys & kind of pick their brain.

I know that this isn't exactly the same, and I don't want you to feel like I am pushing you into anything, but I just want to share a story with you in the hopes that it might give you some hope or at least brighten your mood a little.
Several years ago, one of my dogs became very sick with Lyme disease. It is unfortunately very prevalent here (I live in the state where it was first discovered). It manifested itself mostly in her eyes. Over the course of several months she saw several regular vets as well as 2 veterinary ophthalmologists & was essentially told by every one that she was going to go blind & there was nothing we could do. Traditional treatments for Lyme did not help. It then spread into one of her hock joints. She's a golden retriever, and her hock was about the size of a baseball++. She could barely walk on the leg & was in so much pain. Well long story short, we took her to a homeopathic vet & after working with this vet for several months, she went into complete regression. She still has permanent damage to her eyes and her hock & has her occasional flares, but for the most part we've been able to stop the progression of the disease & even reverse some of the damage. Conventional medicine failed her. Without the homeopathy, she could have lost both her eye sight and her leg, but now she is a happy, "healthy," 5 yr old dog!

Forgive me if any of what I said was mentioned before. I really can't read through all the posts anymore with the state of my eyes.

Hang in there girl! You're tough! You're going to make it through this!

big hugs,
Skeye

Post Edited (skeye) : 1/6/2010 10:12:21 PM (GMT-7)


uniquelyme
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Date Joined Nov 2008
Total Posts : 1037
   Posted 1/7/2010 8:46 PM (GMT -7)   
 
 
MerryGirl,
I am seeing RED!!  Get it?  Anyway, when I read about a Dr. that says to their patient "Your pain is caused by the pain meds you take."  I want to scream..... I know there are many thoughts on CP, but Come ON.......  All of us, as CP patients deserve to be mostly pain free.  I know that my PM Doc, the latest one I see at the same office, is wonderful about listening to me and trying new pain meds.  I'll come in and mention something (a new med) and he'll tell me about it and let me try it.  They should all be like that.
 
Since we all read about pain meds on the internet, we are all pretty knowledgable about them, and we should be able to ask questions....if we think something might work better we ask...that doesn't make us drug seekers....it makes us smarter then the average bear...
 
I like to ask questions.... I like to know things....I'm the best judge about my own body....
 
I hope things work out.
 
Me

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 

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