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Very confused about apnea
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PaulaO2 Offline
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Post: #11
RE: Very confused about apnea
Yes, there's the ASV CPAP. The ASV is auto-servo variable I think. Not sure!

Anyway, the ASV is for those with central sleep apnea. What it does is vary the pressure and keep the brain guessing as to whether to breathe or not.

Central sleep apnea is where the brain, for a wide assortment of reasons, doesn't tell you to breathe. Breathing is the body's way of taking in oxygen while purging CO2. The brain thinks there is no CO2 to purge so it doesn't tell you to breathe.

The phenomenon of CSA happening with increased pressure has yet to be duplicated in a study. Yet, most sleep docs and many users say it happens. It happens to me and was noted in my sleep report.

So I'm not sure if a ASV CPAP would work for you but it is worth a try.

Yes, you are hindered by the VA but there are appeals processes and the like.

PaulaO2
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-30-2013 03:35 PM
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msmcintosh Offline

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Post: #12
RE: Very confused about apnea
Hi Paula,

I had attached my sleep study report data with my original post. I'm not sure if you looked at it. Maybe it will give some more information.

What scares me is that when they used CPAP, my CAI was quite high (60, 78.6). I think most others central sleep apnea is much lower. Maybe it is the opioids causing it, but I don't think my dosage was that high.

Would the opioids have anything to do with the OSA?

I'm worried that so far, my only treatment is to wean myself off of my opioids.
01-30-2013 05:34 PM
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PaulaO2 Offline
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Post: #13
RE: Very confused about apnea
Well, I guess the medication could. The stuff that collapses in the airway and blocks it are voluntary muscles which mean we control them. So when we relax in sleep, so do they. So if a medication knocks us out and we relax a lot, then those muscles are going to be relaxed-er too. And it would be harder for our brains to wake us up to make us breathe.

Looking at your report (I totally missed seeing it earlier), you had more events while "supine", which probably means on your back. Sew a pocket onto the back of an old tshirt and put a tennis ball in it. Or duct tape it on. Play around with locations but most people say it works best when up high, between the shoulder blades. This will keep you from staying on your back while you sleep.

The thing with your CSA is it was very low in the baseline. 3.3 below the threshold for diagnosis. So its own, you do not have CSA. However, when they hooked you to the machine, your CSA events skyrocketed. So treatment for the OSA events would not work with the usual CPAP machine.

The reason you should push for supplemental oxygen at night is evident in the SpO2 summary. Your blood oxygen went down below 90 in all of the tests except when they gave you the O2. You slept the longest, had better blood oxygen saturation. Your baseline O2 of 89 is not good. And it improved a lot when hooked up to oxygen.

I'd really push to give it a trial. Keep pointing to the baseline. Keep showing the O2 lines. Show how even the OSA decreased. AND you slept longer.

PaulaO2
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Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-30-2013 08:42 PM
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Post: #14
RE: Very confused about apnea
I didn't want to risk pulling a wire off during the study, so I purposely stayed on my back the entire time.

Is snoring always associated with OSA? I wonder if I can record myself while sleeping, that is if I snore and stop breathing. Maybe even video tape. It's just me, 3 dachshunds and a cat.

How do allergies affect sleep apnea? I have year-round allergies and my nose is always stuffed up to some extent. I'm so used to it, I don't notice any more.

They are blaming my apnea problem on my opioid meds. So I'm in the process of weaning. I'm almost at the end. On March 5th they will give me a home oxygen machine, the one they should have given me back in November 2012. I also have an appointment at the sleep clinic (I don't know what for) on February 28th.

My pain management doctor was so afraid that I was going to die in my sleep because of my opioid pain meds. I still take Temazepam 15mg which is a benzodiazepine as a sleep aid. I believe benzodiazepines contribute to sleep apnea as well. The opioids never made me sleepy or relaxed, unlike the temazepam. My PM doctor didn't prescribe the Temazepam, so I continue to take it. The provider the prescribes it is well aware of my sleep study as we discuss it often. The Temazepam keeps me asleep for the 5 or 6 hours I sleep, but it never seems restful.
01-30-2013 10:56 PM
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PaulaO2 Offline
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Post: #15
RE: Very confused about apnea
OSA is a throat thing, not a nose thing, although the nose thing doesn't help.

A snore is when that tissue (muscle, fat, etc) relax and flap in the breeze, causing the sound. The closer the tissues are together, the louder the snore, until it flops closed. Then the brain starts trying to wake you up. That's why the limb movement was noted. Some people jerk rather violently, others just a series of twitches. Such movement at night is called Periodic Limb Movement Disorder (PLMD). It is not the same as Restless Leg Syndrome (RLS) which happens during the day, often late in the day. It is possible to have both.

But with CSA, there is not snore. There's no twitching, no struggling to breathe.

What you could invest in is an oximeter. Several of us have the CMS 50D+. Then there's the 50F, the 50E, etc. Check out Supplier #19 in the Supplier's list.
http://www.apneaboard.com/forums/Thread-CPAP-Supplier-List

Wearing the oximeter and saving the data would help to track how low your O2 gets at night, in your own bed, for more than one night.

Recording the snores or video taping has not real use. You've had the sleep test that says you are having issues so that's a given. What's not known is the true cause. Is it the medication? Maybe. Using the oximeter would help you to find a balance between higher O2 at night and still control your pain.

PaulaO2
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Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-30-2013 11:06 PM
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msmcintosh Offline

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Post: #16
RE: Very confused about apnea
I'm glad you mentioned the thing about the legs. I wondered for a while if I had RLS, but when I looked it up I didn't have the right symptoms.

How do you keep an oximeter clipped to your finger all night? I wonder if it could be temporarily taped? I probably could have used one before I began weaning so I could have a before and after. Darn, I wish I came here a long time ago.

I'm glad I don't really have to go through the effort of recording myself.
01-31-2013 12:46 AM
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PaulaO2 Offline
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Post: #17
RE: Very confused about apnea
It stays on fairly well. Taping is not recommended because it can give false readings.

We're glad you're here! Welcome to Apnea Board!

PaulaO2
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Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-31-2013 01:39 AM
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Post: #18
RE: Very confused about apnea
(01-30-2013 10:56 AM)zimlich Wrote:  I'm in a similar situation, but my apnea is not as bad as yours. Do not give up your pain meds. You won't sleep at all without them. I take 10 mg methadone and oxycodone three times a day. There is a difference in respiratory depression which is what we get and not regular apnea- it looks like central apnea, and I guess it presents as central apnea. ... If I didn't take the meds I would not sleep at all and if I did it would not be the good, restorative sleep.
...
What I did was ask for a sleep test with an ASV machine. ASV worked for me. ... If you can wrangle an ASV which is the treatment for central apnea I think you would be pleased.
It really bothers me when doctors don't realize that chronic pain has to be dealt with to ensure quality of life. Please don't let the doc bully into giving up your meds, just get treated appropriately.

Hi msmcintosh, welcome to Apnea Board!

What Mary said, above.

Ask for a sleep test with an Adaptive Servo Ventilation (ASV) machine.
And then appeal the denial.
And then appeal the denial, again. (As they say, the third time's a charm...)

Also, for all we know, the Central Apnea events you experienced when being treated with CPAP may have been caused not by your pain meds but by your benzodiazepine "sleep aid."


(01-30-2013 11:45 AM)PaulaO2 Wrote:  
(01-30-2013 03:42 AM)msmcintosh Wrote:  Baseline Central Apnea Index 3.3 AHI 51.7 (unassisted)
5/5/0 Central Apnea Index 60 AHI 4.5 (CPAP)
9/7/0 Central Apnea Index 78.6 AHI 0.0 (CPAP)
0/0/2 O2LPM Central Apnea Index 6.5 AHI 1.2 (Oxygen)

An apnea index is taking the number of events and dividing it by the number of hours.
CAI is central apnea events and only includes the central events
AHI is Apnea Hypopnea Index and includes central and obstructive events as well as hypopnea events.

Yes, AHI usually includes both central and obstructive apneas as well as hypopnea events, but it looks like the Veterins Administration has included only obstructive apneas and hypopneas in its calculation of AHI. I guess we might call this the "Obstructive component of AHI."


PaulaO2 Wrote:Looking at all three of those beginning numbers, I'm going to guess that they are pressure at inhale, pressure at exhale, and oxygen given. So the first would be the CPAP at at 5 in, 5 out, and no oxygen. The next would be the bilevel at 9 in, 7 out, and no O2. The third would be no pressure but with 2 litres of oxygen per minute.

msmcintosh Wrote:Would taking the opioids cause such a high AHI? The plan seems kind of flimsy. My pain management doctor has already had me wean off of most of my opioids and it is painful. Can anyone tell by the numbers I entered what it means? There was a recommendation to try PAP with Auto PAP, but apparently they don't want to do that.

Yes, a lot of medications can cause apnea events. Any medication that effects sleep would. And opioids do. My suggestion would be to fight to get O2 at night. You could request it be done on a trial basis to see how you feel. You could also suggest an oximeter be used to monitor your blood O2 levels. The number of events dropped dramatically just with the application of supplemental oxygen. That alone should show your doc that you need it.

As for coming off the meds, the idea is to keep the patient as healthy as possible. You and your doc need to decide which is healthier for you: lower pain meds with increased pain but "better" sleep; or keep the pain meds and get "lesser" sleep. From my personal experience, you are going to get worse sleep without the pain medication. Your entire daily life is going to be screwed. This is why at least trying the supplemental oxygen at night is important. It may also help with your pain levels as you would be getting better sleep.

(01-30-2013 11:46 AM)msmcintosh Wrote:  I don't have a choice as to what happens since I am going to the VA. ... I am so frustrated with this whole process.

Actually, msmcintosh, you do have a choice as to what happens, which includes what you are doing now - seeking information and support from sources such as this forum.

Also, I am sure there must be veterins support groups who, if they become aware of your needs, would consider it an honor to help you in some way, perhaps including helping to raise funds for an ASV machine for you, if the VA won't pay for one. Sometimes we need to have faith that help will come if we keep working toward our goals, without despair.


(01-30-2013 01:57 PM)msmcintosh Wrote:  In the link in post 5 it mentions a device.

I'm not sure I understand. Is there a machine that would control my obstructive sleep apnea without producing a lot of central sleep apnea?

(01-30-2013 03:35 PM)PaulaO2 Wrote:  Yes, there's the ASV CPAP....

Anyway, the ASV is for those with central sleep apnea....

Central sleep apnea is where the brain, for a wide assortment of reasons, doesn't tell you to breathe. Breathing is the body's way of taking in oxygen while purging CO2. The brain thinks there is no CO2 to purge so it doesn't tell you to breathe.

The phenomenon of CSA happening with increased pressure has yet to be duplicated in a study. Yet, most sleep docs and many users say it happens. It happens to me and was noted in my sleep report.

So I'm not sure if a ASV CPAP would work for you but it is worth a try.

Yes, you are hindered by the VA but there are appeals processes and the like.

(01-30-2013 05:34 PM)msmcintosh Wrote:  What scares me is that when they used CPAP, my CAI was quite high (60, 78.6). I think most others central sleep apnea is much lower. Maybe it is the opioids causing it, but I don't think my dosage was that high.

Would the opioids have anything to do with the OSA?

(01-30-2013 08:42 PM)PaulaO2 Wrote:  Well, I guess the medication could. The stuff that collapses in the airway and blocks it are voluntary muscles which mean we control them. So when we relax in sleep, so do they. So if a medication knocks us out and we relax a lot, then those muscles are going to be relaxed-er too. And it would be harder for our brains to wake us up to make us breathe.

Looking at your report (I totally missed seeing it earlier), you had more events while "supine", which probably means on your back. Sew a pocket onto the back of an old tshirt and put a tennis ball in it. Or duct tape it on. Play around with locations but most people say it works best when up high, between the shoulder blades. This will keep you from staying on your back while you sleep.

Although you purposely stayed on your back the whole night, as you will explain in a later post, nonetheless PaulaO2 has made an important suggestion.

Sleeping on our back usually makes obstructive apneas much worse.

I think the supine position is great during a Sleep Study when we need to find out if we are susceptible to OSA, but when we are trying to sleep as well as possible at home we can minimize our obstructive apneas and hypopneas by avoiding sleeping on our back.

Many people have found wearing a teeshirt with tennis ball (as PaulaO2 described) ensures they will not be caught dead sleeping on their back, so to speak.

I wear one when I go to bed.


PaulaO2 Wrote:The thing with your CSA is it was very low in the baseline. 3.3 below the threshold for diagnosis. So its own, you do not have CSA. However, when they hooked you to the machine, your CSA events skyrocketed. So treatment for the OSA events would not work with the usual CPAP machine.

Nor would an Auto CPAP work for you, and nor would an Auto Bilevel PAP.

But I think an Adaptive Servo Ventilation (ASV) machine would eliminate or nearly eliminate all apneas and hypopneas, even if you are taking adequate pain meds.

I am attaching the Respironics comparison guide showing their various models and what each machine is able to do. The comparison guide is a little difficult to get through, and you may need to take a couple runs at it, so to speak, but I'm sure you will eventually be able to leap it in a single bound, if you ask us for clarification of whatever may be unclear at first.


PaulaO2 Wrote:The reason you should push for supplemental oxygen at night is evident in the SpO2 summary. Your blood oxygen went down below 90 in all of the tests except when they gave you the O2. You slept the longest, had better blood oxygen saturation. Your baseline O2 of 89 is not good. And it improved a lot when hooked up to oxygen.

I'd really push to give it a trial. Keep pointing to the baseline. Keep showing the O2 lines. Show how even the OSA decreased. AND you slept longer.

(01-30-2013 10:56 PM)msmcintosh Wrote:  They are blaming my apnea problem on my opioid meds. So I'm in the process of weaning. I'm almost at the end. On March 5th they will give me a home oxygen machine, the one they should have given me back in November 2012. I also have an appointment at the sleep clinic (I don't know what for) on February 28th.

My pain management doctor was so afraid that I was going to die in my sleep because of my opioid pain meds. I still take Temazepam 15mg which is a benzodiazepine as a sleep aid. I believe benzodiazepines contribute to sleep apnea as well. The opioids never made me sleepy or relaxed, unlike the temazepam. My PM doctor didn't prescribe the Temazepam, so I continue to take it. The provider the prescribes it is well aware of my sleep study as we discuss it often. The Temazepam keeps me asleep for the 5 or 6 hours I sleep, but it never seems restful.

I don't know much about sleep aid meds, but I've heard they often make things worse, by making you sleep but suppressing the rejuvenating deep sleep and the REM sleep we need.

Also, perhaps the benzodiazepine is largely responsible for the many central events you had when being treated with CPAP.


(01-30-2013 11:06 PM)PaulaO2 Wrote:  What you could invest in is an oximeter. Several of us have the CMS 50D+. Then there's the 50F, the 50E, etc. Check out Supplier #19 in the Supplier's list.
http://www.apneaboard.com/forums/Thread-CPAP-Supplier-List

Wearing the oximeter and saving the data would help to track how low your O2 gets at night, in your own bed, for more than one night.

... You've had the sleep test that says you are having issues so that's a given. What's not known is the true cause. Is it the medication? Maybe. Using the oximeter would help you to find a balance between higher O2 at night and still control your pain.

Please keep in mind that the wrist-mounted Pulse-Oximeters are *far* less uncomfortable to wear an entire night than the ones where the whole thing clips onto the finger.

This is because, with the wrist-worn devices, only a light rubber boot covers your finger tip, but when the whole thing is clipped onto your finger it must clip on with greater force or it would immediately fall off.


Our hearts go out to you. Take care,
--- Vaughn


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.pdf  Respironics_2013_SystemOne-comparison-guide.pdf (Size: 58.37 KB / Downloads: 146)

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 01-31-2013 03:24 AM by vsheline.)
01-31-2013 03:00 AM
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Post: #19
RE: Very confused about apnea
Wow, this is great information. I'll order the oximeter. It should be interesting to see what results I receive. The tennis ball sounds like a good idea, but for me, I have to say, sounds painful. When I go to my appointment at the sleep clinic on 02/28, I'll ask then about the ASV CPAP. I don't really know what the appointment is for. I just noticed it on my online calendar.

One thing frustrating about the VA is that appointments take forever. My PM doctor tells me to wean off my opioids and then see him in 2 months. The level of attention I receive is nothing compared to what I had received when I had private insurance. I heard it's because there are not enough doctors for the amount of patients. I usually have to wait 3 months for an appointment.
01-31-2013 02:57 PM
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Post: #20
RE: Very confused about apnea
I ordered the wrist oximeter. I'll start using it as soon as I get it. I actually can't wait. What's it going to tell me? Is it going to show me a percent graph?
I looked at the SpO2 Summary on my sleep study report and it makes no sense to me. How does it relate to the oximeter?

Is REM sleep associated with dreaming? I thought it was odd that I had no REM sleep, even while on oxygen at the study. I can't remember the last time I've had a dream.

I am so grateful for all the information everyone's provided here! I felt so all alone and lost and especially, uneducated. Thank You!
01-31-2013 05:13 PM
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