INSOMNIACS place to talk in the wee hours

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  • susan3
    susan3 Posts: 2,631

    hi blondiex...hugs your way

  • blondiex46
    blondiex46 Posts: 2,726

    Thanks rose and hi susan

    I know rose mo said i am not sick enough 4 hospice 

  • Chevyboy
    Chevyboy Posts: 10,258

    Morning gals!

    Enerva, I was going to ASK how do you guys DO it, where it is always so cold?

    I live in an old neighborhood here in West Highlands... (used to be called North Denver, but over the years this area has become "uppity" and now we are known as "West Highlands"... Ha!)

    So anyway, this is an older part of Denver, with older underground pipes, etc. so sometimes everything OVER here freezes up solid! We have to let the water drip in the bathroom, AND kitchen sink...

    A few times the washer would not work, because the pipes, being on the North side, were frozen.

    This only happens when it gets down to 15-20 below, and STAYS there. This year we have been lucky..... Only about 11 below at the coldest.

    Our house was built in 1886.... And we love it! It is being surrounded by 2-3 story fancy-dancy flat-topped doubles with "solarium's and "birds-nests" on the top! They are beautiful inside, but built with minimal yards. Guess no-one wants to grow stuff anymore. Other than pot....Bawling

    Peppermint! You doin' okay?

    And Blondie... what are you trying to get? I know they are so strict about giving us anything anymore, because there are too many thugs roaming around, trying to buy it off the street! Can you ask your Doc for samples? Or to HELP you get it? I mean HE wrote the prescription!

    And I don't think the cold weather helps you either!

    Can one of the pharmacies order it for you? I would raise hell. Seriously.

    Okay, YES! And you guys KNOW, that none of us know when we will not be around anymore.

    I think we can get home Hospice, where they can be your advocate, and help you get help? Or maybe even call an AARP office? How old are you? Are you over 55? I'm not either, but...........

    We just don't ever plan for it, and we shouldn't. We can think about it, and do things that have to be done, but we have to try and go on, like we will have a million tomorrows!

    I just remembered.... My dink SIL had moved her Mom to a Hospice place.. Because it was cheaper than the nursing home....

    Well get THIS! They kicked her out, because she was there for over 1 1/2 years! She just kept kicking, and kicking, and they moved her back to a nursing home!

    So we just take care of each day...... Like when DH came in whining because he fell on his knee....

    OH FOR GODS SAKES GET A GRIP! IT AIN'T BROKE, DAMNIT! Okay, no I didn't say that... but sometimes we just have to think it...

    And my hip looked at him and said "what a baby".....

  • Chevyboy
    Chevyboy Posts: 10,258

    image

  • good morning ladies.

    First , an apology. Been in such a funk. Shouldn't have brought it here. So feeling happier today. So come what will. I am still alive and able to feed, bath myself. Can still walk - albeit like to the bathroom and back- I'll take it. Got my big girl panties on - yes they are warmer - and some boxing gloves / really hard to type with. Bout ready to start kicking some cancer arse. Again sorry. It is supposed to be a happy place right ?

    Smarty. - very funny. Cold in Ca only 46. I would be in my shorts at 46. Course my thick hairy legs might stand up straight. Not shaving Til spring this year. Forget it.

    Chevy. / of course spouses drive us crazy sometimes. Don't matter who we lived with sometimes they just rub us wrong. Hope your dhs knee is fine. But your right - big ole babies most of then are.

    Enerva - stay warm !

    2nd / hey dear friend. Thinking of you.

    Rosevalley - love your idea for Blondie , sounds much easier.

    Blondie - oh now I read mo says not sick enough. Ugh. Way to cold to run all over town getting in and out. I know you have a transportation issue. Crazy new rules for pain meds. I slways get mine at sams club. They know me by name and face. They always tell me if they have it in stock of will order ASAP for next day delivery. Can't mo nurse call and check for you? Have heard nurses at mos office doing it for a lot of people for the same reason.

    Susan - I've had more fractures and just dang cancer eaten away so much spine. Grr. But very very glad your back ! You are so sweet

    Hi1 / SAS. - hey ladies.

    Sorry to anyone I missed. Hope all had a great warm , pain free day.

    Hottie hoo

  • Holeinone
    Holeinone Posts: 1,418

    Patty, NO apologies needed, EVER....we are friends, need to be able to be honest. Coming here, saved me. I felt like I needed to be tough around my family. I would come here, and spill my guts. Sas, Chevy, Cami, 2nd, & the entire crew got me through it.

    My new thrifting find ( thanks Sas....new obsession ) is a toy, musical Greek bouzouki. It works, need to find out the name of the tune. Someone imageis selling one on eBay for $129.00. No bids. I bought mine for $10.00

    Just what I need, ay??? More stuff....lol...also Pier One had there xmas stuff for 75% off. Got a few fun things for the house, that are not Xmas looking.

    Hello to all.....

  • Hi Holeinone, what a cool find!! I love to junk shop and find treasure. I get out, walk which helps, and seems so normal for me! Have a great day.

  • dutchiris
    dutchiris Posts: 783

    image

  • Rosevalley
    Rosevalley Posts: 1,664

    Blondie- they really need to get a grip with cancer patients especially stage 4. There are enough of us that there should be an exception and relief. I realize that the onc offices don't want to get in the business of delivering pain meds, then another workable solution needs to be put forth. Maybe everyone going through pain management services; although not sure how that would play out in rural or small towns that don't have pain management doctors. Perhaps having local hospitals handle narcotics for cancer patients if local pharmacies and chains refuse to stock and deliver. Any other ideas out there? It surely does appear to be a nationwide issue. Different ideas from all over hashed out or maybe a campaign directed at our congress.. ugh.. might help? Blondie you might start a thread on it, asking 18 pharmacies and coming up empty handed is outrageous.

    Pattie- you sound better! Glad for you. Summer is coming and warmth for your poor bones! Hope things continue to improve- HUGS!

    Spookie- I know the headaches are caused/made worse by weather pressure systems, but PCP says no. Ugh. Wrong. I have never been told I have fibromyalgia. But half the crap on my "problem list" is new news to me! The things that drive me nuts are not even listed! I wouldn't even recognize myself from the problem list on "my chart" how odd is that? No point in complaining because it falls on deaf ears.


  • wren44
    wren44 Posts: 8,075

    Rose, Your PCP is wrong about weather not causing headaches. I saw a client weekly who would get a headache before it was going to rain. She was right every time.

  • spookiesmom
    spookiesmom Posts: 8,178

    Ha! I'm better than the local TV guys about rain!

    Rose, sent a pm

  • wren44
    wren44 Posts: 8,075

    Spookie, Our water temp gets up to 56 in the summer. And no, I wouldn't dream of swimming in it. Lived near the Gulf Coast too long where water temp is decent. People do it here tho.

  • sas-schatzi
    sas-schatzi Posts: 15,889

    PATTY YOOHOO this is for you :)

    Under construction

    Your total body is wound tight in pain. An analogy : a toy airplane that you wind the propeller and the rubber band gets tighter and tighter. With pain the same thing can happen to the body. One turn it was as single area that the brain was responding too. But the messages from the brain &body can actually increase pain b/c it sends too many stimuli and releases chemicasl in the area. Then another turn of the propeller the tighter the band becomes. This continues till the rubber band is so tight. The tension is complete. The result is that when the propeller releases the airplane can fly. With the brain & body we need to find ways to release the tension.

    Think of taking the pain away layer by layer. Orthodox medicine sometimes gets lost in pills and over technical treatments. I'm not saying that we can take away all the pain, but we can try to alleviate areas that only came to the pain party b/c of too much prodding by the brain and body.

    Key to the understanding of pain is the PAIN CYCLE.  1. When pain starts there is signaling to the brain. The brain evaluates, stimulates many responses. Another portion of the brain is paying attention and starts to worry (anxiety). 2.The brain signaling to the pain site is actually protective. The brain and the body are working together to remove the pain. Think of putting your finger in a flame. Brain & body work together to remove the finger from the flame. Protective. The ideal is to stop pain between I &2. We stop the cycle from commencing. Each step along the way, if pain is not interrupted it will become more difficult to control.

                                                                                      1.  Pain

          4. Increase in Pain , anxiety, muscle spasm                                       2.   Increase in Pain , anxiety, muscle spasm

                                                                3. Increase in Pain , anxiety, muscle spasm

     

    This is a repost from another thread I worked on. Including it here because in order to control pain we need to understand how to evaluate it.

    Jun 21, 2011 01:22 am sas-schatzi wrote:

    . This is going to be long, sorry folks. Generic description of how to evaluate pain and what to do.

    First try to see if comfort measures will change level of pain---positioning change> if you have been in on position too long that can cause muscle fatigue which can lead to pain. When appropriate try warming up or mild stretching or getting up and walk around. In the hospital The first thing after asking what when where why , how long etc to determined what I was dealing with,  I'd then look at, is something to tight restricting etc. If the patient has pushed things too much, too fast and pain is caused by overuse---rest.   Bottom line is figure out what we are dealing with first. If this fails  go to meds

    Using the pain scale. Research has shown that the worst judges of a patients pain are doctors and nurses. The best judge of the patient pain is there own self description. Everyones tolerance of pain and response to pain is different. No one should assume that anyonelses pain is like their own. If they do, they are arrogant and ignorant of the indepth research of the last 30 years.  If you have somatic pain which is physical body pain----taking medication is appropriate.

    I know allot of people mock the pain scale ,but with adequate explanation it works. This is how I used to present it.

     0 --no pain.

    1-3 is mild pain, generally tolerated well, but there are people that would like relief from that , so NSAIDS  like motrin ,advil, tylenol if tolerated usually work well.

    4-5 and maybe 6 are moderate pain. The choice of pain reliever can be individual here too. Many people do not like taking a narcotic because of fear of getting hooked. So using the previously mentioned drugs are okay. Some people don't get relief with these drugs. Taking the lowest dose narcotic may be a better choice for this individual. Many of the narcotics are combined with the nsaids or tylenol. For example, tylenol 325 mg with oxycodone  5mg = percocet, tylenol 500mg + oyxcodone = Tylox, Hydrocone and tylenol 325mg =vicodin, Etc. Try one pill at lowest dose. If no relief or relief is not acceptable and the doc has said it's okay take the second one---do so.  The reason the drugs are combined is they hit different receptor sites and that will give more widespread relief.

    7-10 is severe pain, if at home take the higher dose allowed and should expect pain level to decrease below at least a four or lower,  if no pain relief call doctor.

    Don't exceed recommend doses without doctor being aware because it could be an indicator something serious is brewing.

    NSAIDS and tylenol are not benign drugs. Taken in doses higher than recommended can cause damage to the liver and the kidney , that may not be reversible. NSAIDS and tylenol should never be taken with alcohol, because of this---Millions of people in the USA have done this for decades----many may have problems years later. Only in the last 15 years has the damage that the NSAIDS/tylenol in combination with alcohol become known, BUT the public has not been adequately informed.

    In the hospital at a 6 or higher, I always recommended IV pain meds because------>5- 6 you start to see changes in blood pressure and heart rate,  and chemicals are produced in the body that will actually interfere with healing.

    If someone said "well my pains a 20 or 100". I would immediately contact the doc for a regimen change. For example, bone pain from neulasta I said" 100 and it feels like wolves gnawing at my bones and I'm alive" That's pretty descriptive that the meds weren't working.

    When we talk of emotional pain.  That's where the doc or counselor ought to be looking at drugs like the benzodiazapines>>>>xanax, valium, ativan. An evaluation for depression is appropriate because  there are many good drugs that will alleviate this and take care of the physical pain as well. When our bodies are under to much pain stress for too long, we can get into the "chronic widespread pain syndrome cycle" Abbreviated CWP. Previously known as and still known as fibromyalgia, but the seriousness of it has only recently been taken accepted and treated seriously. Drugs like Savella and cymbalta and lyrica are good for this, but they do take several weeks to do there magic. Think of it as a logjam. Taking one log away isn't going to get the river flowing. BUT in the meantime we need relief. A combination of drugs to relieve the emotional stress >>benzo's and the physical pain>>i.e percocet may be appropriate. 

    We each have to evaluate which it is emotional or physical and take steps to make sure we are safe, but getting some relief. Do all the comfort measures possible>>massage, adequate sleep, adequate hydration(lack of proper hydration will cause the muscles to ache/pain and fatigue faster). Get our cancer docs to make proper referrals for the emotional pain. The best resource to get this moving in a cancer center is through the social worker that can work the system. Get our docs to prescribed appropriate physical pain drug management.

    Thyroid--Have a thyroid workup. Ask doc to consider getting you into the midrange to high range of normal lab values. Discuss use of LT4--synthroid,  levothyronine, levoxyl. Try and get them to consider T3 cytomel in a low dose range. Evidence based research is hard to come by. I intentionally stopped pain medicine in July 2014 to see what affect on pain and mood Thyroid meds had if any.  There was one published study that was done by an ENT doc.The dose range he used was 7.5 mcg-10 mcg.  Having difficulty retrieving it. The following link is an Evidence Based study on use of T3 with depression. The study used 100mcg of Cytomel-T3. Why they didn't use a lower dose--unknown.

    http://www.ncbi.nlm.nih.gov/pubmed/19108898

    Fentanyl--  is at the top of the heap in pain control. The monograph(drug info) describes that patient should have reached the point of failure to control pain with Morphine. Everything is relative. Ask your doc for a patch. Fentanyl 25 mcg to begin with. Some docs b/c of the problems with the Federal Govt. won't prescribe Fentanyl. You should have only one doc prescribing controlled substances. If your PCP won't do it. Ask the MO. Ask your pain mgt doc. Based on what you wrote before Fentanyl wasn't offered as an option. Pursue this vigorously. Because I understand the mechanism of pain and how drugs work I successfully used Fentanyl from Dec 2009 till I discontinued in 2011. I did not have to go through the idiocy of Morphine failure.

     You are Stage 4. Documented uncontrolled pain. The pain mgt. doc offered a pain pump. Duh, demand a trial with Fentanyl. Less costly as pumps cost in the six figures( friend quoted near 250, 000) and  less dangerous.

     In order to make this work, you need to start a pain chart ASAP. Use one of those black&white school notebooks.

    Date/time         pain location           pain scale pre drug         drug & dose        pain scale post drug at 2hours     Last BM

        

    Exercise--research has shown for decades that exercise can help pain. But it's not a one size fits all approach. Plus, any program needs to be started slowly.  Very slowly b/c it can increase pain if done too fast.

    Posture should be good when doing any physical activity. The skeleton is designed to work well when everything is aligned properly. When our posture is off kilter, muscles have to work harder to keep the skeleton from becoming a problem. That increased tension on the muscles can increase pain.

    Walking-This is likely the easiest to start immediately. Walk for 5 minutes a day in the house. Every third day add a minute. Max out at ten minutes. Then try to add a second walking period during the day. When adding the second period start it the same as the first. i.e 5 minutes. The advantage of doing it in the house is reduced risk of falls. Try and do the walking within one hour of waking.

     If your shoulders work. Put your arms through full range of motion for 30 seconds slowly, not like a fast windmill. Think medium. Don't increase for a week. Then max out at 1 minute over the next two weeks.

    Hips & knees--Stairstepping if there's a two inch step around the house, start with one foot step up then down. Then alternate to the other foot. Do only 5 each foot for a week. Then the next week add another 5 up and down with each foot. Max out at 20 by four weeks. Make sure your posture is good during this exercise. If the hip is very out of condition, this may have to be done more slowly.

    Hips & knees continued--stand at counter with hands on counter. Perfect posture--chin up, back straight up and down.  Only a few inches from counter. Weight on one knee and bend at the knee. Only slightly 5-10 degrees. Repeat 1-3 times. Alternate to other leg. Increase after third day only by 1-3 times This one will come back to bite you in the ass if you try to increase the reps too fast. Think small. Reduces hip and knee pain. But too many reps done too early will increase pain, Think small

    Warm moist heat. Has been used for centuries, but is probably most noted for it's use in polio. As stated above pain can cause other areas of the body to become painful b/c of too much stimuli. With the muscles that are at maximum tension, we can help them relax with warm moist heat. How to do it? Set aside a bed in the house if you can for this purpose. If not be creative. The reason I say set aside a bed is you will need at least three large long heating pads(one for each leg  and one for the torso. Three hand towels( same--each leg and torso). A plug strip that you can plug all the heating pads into and leave plugged into. How to use. Turn heating pads to low heat maybe medium. Key is they can not make the skin feel hot (burns). After pads are preheated on bed i.e warming the bed. Wet towels with medium hot water (heat will be lost when getting them set up on you in bed). The key is you want them warm to start. Lay on back in bed. Place one warm towel over leg and put one heating pad over top, repeat with other leg. Tuck the heating pad down the side of the leg. Then place last towel over torso followed by pad. Rest in place for minimum 20-30 minutes. Suggest setting an alarm at the beginning of set up. This will be so comforting you may fall asleep. SAFETY: use low setting to prevent burns. Flip over and do the other side, but will need help to position equipment.  

    Avoid massage in a hyper pain state. Possibility of causing more pain. Try skin Brushing. Different definition than what's on the net. Lay fingers flat on the skin. With a light sweep, brush as if picking up a particle. Do this lightly over surface. Stimulates circulation of the area. Very light. have your DH do this for you.

    Savella ; repost from another thread I worked on :).

    In Dec. 2009, I asked my PCP for an antidepressant. I told her that I was pretty distrustful of the side effects of all the psych drugs. From her experience, what did she perceive as the least problematic of all the drugs available. She suggested Savella(trade name in USA--Forrest Pharmaceuticals). It had recently been approved in spring of 2009 in the USA for use in fibromyalgia. It was recognized as having only mild to moderate antidepressant indications.

    I have post polio and met the diagnostic criteria for fibromyalgia. Significantly made worse by Arimedex. The Arimedex, I quit in Nov. 2009 b/c the pain increase was unbearable. Subsequently, I tried Femara  and Aromasin.

    I am, also, cautious about new drugs. Savella--Milnacipran--generic name, has been available in Europe since the mid 90's. Not a new drug, just a new drug in the USA. For me it was a home run. Not a new drug, good for depression and fibro.  Did a relook at the monograph(drug info). I forgot in the USA it was only approved by FDA for Fibromyalgia. Memories a little fuzzy, but I think it had to do with having to repeat clinical trials for depression, if it was going to be approved for that in the USA. Check your countries for approval use.

    Before I started writing here, I did an Evidence Based Search for publications. There are numerous studies. I chose this meta-analysis study b/c I felt most lay people  could read it and understand it. When as a lay person reading studies, over-read(skip) the statistical info--it just makes you confused.--me too sometimes. I have included here the conclusion of the study. The bolding emphasis will be mine.  I will also link to the whole study b/c each section of the study compares Milnacipran to other psych drugs. It may be of interest to others that are on different TCA's and SSRI's, other SNRI's. In reading the study if you need to translate the name of the drug or drug class look at the list I posted on page 1.

    For those in the USA, the reason you haven't heard of it much is Forrest Pharm was granted proprietary rights by the FDA as a trade name drug until 2021. It can't be produced or dispensed as a generic drug. It's expensive. My PCP doc kept me in samples from 2009 until I discontinued it in 2013. Bless her. Also, there was a conception I think that it wasn't of value in major depression, only mild to moderate. This study from 2010 clearly disproves that misconception, as some of the other studies do too. I do encourage you to read the entire study, it truly is worth the time. You'll like the info regarding weight loss :) Study below.

    -------------------------------------------------------------------------

    Milnacipran: a unique antidepressant?

    Whether or not the profile described above justify referring to milnacipran as a unique antidepressant, it is clear that this agent has a distinct combination of characteristics.

    It is the only SNRI with a balanced (1:1) activity on NE and 5-HT reuptake inhibition. Its efficacy in mild, moderate, and severe depression and a good overall tolerability are combined with a low risk of causing pharmacokinetic drug- drug interactions, sexual dysfunction, minimal effects on body weight in normal-weight patients, and a lack of toxicity in overdose. This particular profile qualifies milnacipran as a first-line antidepressant for many depressed patients. Milnacipran may be particularly well-suited for low-energy, slowed-down patients. Patients who have been withdrawn from SSRIs or other antidepressants due to lack of efficacy or intolerance may find milnacipran to be an effective therapeutic option.

    Note that this overview highlights what we consider to be the most interesting and relevant points of the profile of milnacipran and does not claim to be exhaustive. Approved indications and safety recommendations may vary between countries, so prescribers should check on the summary of product characteristics in their own country.

    Link to entire study;

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938282/

    Abstract link  http://www.ncbi.nlm.nih.gov/pubmed/20856597

    ---------------------------------

    Link to my favorite drug site. It's run by the government, surprising it's great.  Monograph on Milnacipran as written for the USA. Check your country's source for monographs.

    http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=d37684d6-5134-49e6-9867-5fd67c9dfd90 

     

    Benzodiazapines: The below is a repost from yet another thread.  For pain I recommend consideration of Valium and Ativan. Key in on the descriptions of Ativan and Valium. I've left the other benzo's here just because it's a nice little explanation of the family group and each drugs particular benefit. Valium will help interrupt the pain cycle b/c of it's affect on anxiety and muscle spasm. Ativan interrupts the anxiety cycle and when combined with melatonin is great as a sleeper combo. BUT you wouldn't take them together. Valium would be good in your scenario, taken in the am. Ativan with melatonin for sleep.

    Each benzo has it's own particular little nitch in this family of drugs.

    1. Xanax-aprazolam-antianxiety, but I have found that people tend to end up having physical dependence problems. This is from long term personal observation versus scientific reporting. I dislike the drug intensely.

    2. Restoril-temazapam-sleeper. I respect restoril allot. Never had a negative patient experience with it. But my experience of use with it was in standard patient population, NOT with patients on oncology drugs, Tamox, or AI's. So even though I respect the drug allot, it may not be a good choice with oncology drugs. I would suggest a first try at it, but if it doesn't work ask for Ativan. (Rose had a negative experience with it)

    2. Valium-diazapam-antianxiety and muscle relaxer. There is NO drug that compares to this drug for relieving skeletal muscle spasms. The pain caused by skeletal muscle spasms causes allot of anxiety. Valium interrupts the cycle of muscle spasms and anxiety. It's a two for one drug. I respect Valium very much. It used to be used as Versed is used now. But when Versed was introduced, it replaced valium. It commonly is used now for minor procedures or for patients that are claustrophobic with CT scans and MRI's

    4. Versed-midazolam-used for surgery/procedures, all levels from general anesthesia to twilight, because of it's amnesic quality i.e. from the time it's administered it causes the patient to forget until it wears off. It also has a delicious skeletal muscle relaxtion quality. Versed is a very strong drug that cannot be used without direct supervision by qualified personnell with monitoring of all vital signs--BP/R/P/EKG and O2 saturation. Oxygen at 2 liters is the usual adjunct when Versed is used. I respect Versed allot. It was a major leap forward when it was introduced in the late 80's.

    5. Ativan-Lorazapam-great drug for anxiety. Minimal side effects. Dose 0.5mg to 4mg. Taken in combo with low dose OXY for pain, or when  Fentanyl patch on it works well. Taken only with melatonin for ins useful for sleep

    Sleep-- Interrupted sleep does all kinds of things to the body & brain. Sounds crazy, but evaluate your bed. Consumer Reports Best buy memory foam mattress can be bought for under 700$. A side affect of memory foam that I didn't plan on was the warming affect on the muscles A two for one Comfort and warmth are great for stressed tension filled muscles.

     Patty I think this is it. I may tweak this a bit and revise as opinions are offered. I'm going to take off the UNDER CONSTRUCTION off the intro. The best person to get some level of pain control for you is YOU. Do what you individually can do and then get the docs to do what they can. OOPs forgot opiods BBL

    I'm putting two links here. One was from a thread I worked on before Christmas. The second link is from a thread I worked on a few years ago

    https://community.breastcancer.org/forum/102/topic/826526?page=1

    https://community.breastcancer.org/forum/8/topic/770655?page=1

     

     

  • Chevyboy
    Chevyboy Posts: 10,258

    HiHo..... Ahhhhhh those Greeks! Don't get me started....

    https://www.youtube.com/watch?v=zx-a_17OVc4

    How fun! A new toy for you! I think it is the instrument so well known in all of Greek music.... !

    Sass.... I think it's best if I just "save" your page to my Medical Favorites.... So I'll have it handy when I need it!

    I just bought a 3 " Novafoam Gel Memory Foam Mattress Topper.... and I'm waiting for it to unfurl, to put the bed all back together..... Maybe help my hip when I'm sleeping on it? Janie and I had lunch there, and it was just fun....

    Do any of you have one? Just tell me the good things.... nothing about the not-so-goods.... I read all the reviews and decided this is the one I wanted.

  • sas-schatzi
    sas-schatzi Posts: 15,889


    Well Patty you are going to have a book.

    Chevy don't save until I take off the UNDER CONSTRUCTION.  LOL still writing. Using lots of old posts. It's funny how I use the same phrasing for things

  • Chevyboy
    Chevyboy Posts: 10,258

    Okay.... I just need to make me a "Sassy's Stuff" file.... Winking

  • spookiesmom
    spookiesmom Posts: 8,178

    CHEVY I have a 3" memory foam topper. I love it, but! Untill it warms up in winter, it's a bit chilly. If you have electric blanket turn it on a few minutes early to warm it up. It does take up room on a fitted sheet, so you need the bigger ones. I don't have trouble turning on it, getting off of it. In summer I don't think it's hot

  • Chevyboy
    Chevyboy Posts: 10,258

    Okay Thanks! I got the bed together really nice.... Soft flannel sheets and all! I always warm the bed up a little before I get in! I'm so glad you like it! I DO have larger fitted sheets!

    It's real nice.... and heavy! Fit perfectly! Came with a nice cover also, which I then covered again, with a mattress cover-pad.... I just need a ladder to get into bed!

    (just kidding) But I love it, and haven't even slept in it yet.

  • Chevyboy
    Chevyboy Posts: 10,258

    image

  • Rosevalley
    Rosevalley Posts: 1,664

    Spookie- sent you a PM. I wish I could copy it and send it to Sass. When I checked your sites I happened upon a thing called reactive arthritis or Reiters syndrome. I about fell over at the description. It seems like such a bunch of utterly unrelated symptoms that when clustered = reactive arthritis. I never heard of it, but it surely does explain this last year, but I don't know if the inflammation caused it. I had 2 eye infections and my eyes are always red, 3 bad UTIs, severe knee pain that was helped by the antibiotics for the UTI! Then there was the severe anemia of cancer eating out the bone marrow, 20 transfusions, aromasin and afinitor. I dropped the afinitor because of edema and cardiac issues, arrythmias and ever increasing edema. Sigh.. how to figure out which one causes which or if it is all just mish-mash.

    sass- great description on pain to Patty. Although there is a stunning physical difference between how people experience pain. I have a CRAZY high pain tolerance. I mean in 2012 I walked into the oncologists office with a mild compression fracture in my back, wide spread lytic damage to my spine, lost over an inch in height, had multiple broken ribs and took no pain meds. I had cancer in every vertebrae, all long bones, ribs sternum and pelvis. I was uncomfortable and knew it but didn't ask for anything. My ever accommodating oncologist would only give me 1.5 tabs a day of Norco. No refills. So it's a good thing I have the pain thresh hold I do or I would have blown my head off. When the cancer ate out my marrow again in Nov 2013 I was in so much pain I demanded percocet and my PCP gave me 1 tab a day no refill. I have learned to just accept 1 tab a day and cut out all activity if pain trumps my ability to ignore it, bank it on good days. I suppose I could get more if I wanted to irritate myself and go in to the doctor... It is not a great way to live and I do wonder if my ever slowly diminished ability to do things isn't entirely caused by pain limitations. I wish I was in the 60% of folks who tolerate AI's with no joint issues, lucky ducks.

    I wanted to ask if anyone has had steroid shots in their knee - did it help? If it helped, how long did it last? Might need to pm Mags.

  • sas-schatzi
    sas-schatzi Posts: 15,889

    Rosie, one thing I have been amazed at in the threads is the different pain responses with bone mets. The first person to enlighten me regarding this was ChrissyB. What's blown me away with the thyroid meds is pain I accepted from age 30 on is gone with the meds. In studying the thyroid info, different material suggested a connection. But orthodox medicine would deny the relationship. That's why I specifically stopped pain meds in early July 2014, my own little experiment. Glad your plan is working. The advantage we have as nurses is knowing stuff. Hey, it follows the Kenny Rogers Gambler song lyrics.

    Haven't caught up in reading, just snippets

    HI1 saw your treasure-----cool. I got multiple things yesterday. Lab visit followed by three thrift stores.:)

     

    image

    Anchor hocking--Florence 

    listed 20 $      got mine for 1.25$

     

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    Listed as high as  35.00$----Indiana Glass  fairy lamp. Now have two. Overpriced but I got mine for 1.25$

     

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    High list about 7-8 $ per bowl. Mine 1.25 for one. AH Wexford

    Hi1 you think of me when you thrift and I think of you LOL. YAY

     

     image

  • jwoo
    jwoo Posts: 936

    i'll play ketchup later, but for know, i will just leave this here for your enjoyment. Happy

    http://barkpost.com/hot-firefighters-rescue-pups/?utm_source=facebook&utm_medium=shelter&utm_campaign=Adopt_a_Pet

  • sas-schatzi
    sas-schatzi Posts: 15,889

    Sweet puppies  :) the guys aren't bad either LOL YUM.

  • susan3
    susan3 Posts: 2,631

    Chevy, I have a funny, not a bad matress story. We bought a temperpedic matress and had to,exchange it. Every time my husband got to close to the edge he fell out. It was pretty funny

  • Rosevalley
    Rosevalley Posts: 1,664

    We got this super high puffy mattress for my middle daughter who is very thin like her Dad. It's soft and ridiculously thick; she picked it out. I wish I had thought about a regular boxspring under it making it very tall; we should have gotten a half boxspring. Well she loved the bed but rolls around a lot in her sleep and rolled right off and gave herself a concussion it was so high! She hit the wood floors.

    Be careful buying an Englander latex mattress. We loved ours for the first 6 months of winter, warm and toasty. Then came summer. I thought we would roast from the heat it trapped. We gave it away... expensive lesson!

  • susan3
    susan3 Posts: 2,631

    patty peppermint, sorry you have had so many fractures. It's so hard to manage systems and pain. Glad you have felt up today. It is quite a rollercoaster ride. My prayers will always be with you :

  • badger
    badger Posts: 25,041

    image

    Isn't this the guy who wrote the Hippocratic Oath taken by physicians?
  • sas-schatzi
    sas-schatzi Posts: 15,889

    badger Yup.

  • Hi Badger, I think my Doctors were on vacation for that lesson! Begging for meds is ridiculous! I'm Stage IV and when the Taxol and Neulasta hit, I was about ready to saw myself in half and ditch everything from the waist down. My joints, knees, and hips felt like they exploded on me. So my MO sent me to Rheumatology to check my arthritis! Two of three agreed it was from the chemo and Neulasta. I got plenty of pain meds. Every-time something appears I get sent off to another Doctor. Very annoying, and cost a ton extra because of the extra trips and co-pays etc. I now have 15 Doctors, before this I had ZERO! Funny I lived to 58 all by myself, now it takes every Doc in the building.

    I hope you are having a great weekend!


  • good morning all.

    SAS - wow. That's a lot to ingest I read and reread your post here , pm's , and about pain threads. ( seriously I think I read everything you write ). But I gotta write it down. Something about reading it and then writing it makes me understand more clearly. Funny my mo or pain mgmt dr has never given me that much info. I can't wait to really dig in. Been up since 4am with terrible pain. Took my meds but still waiting. First thing I am trying when dh wakes up is heating pads with warm towels. Both have given me all relief seperatly before. Can't wait to put them together. Then when the pain dissolves some I can process all you said easier. Mo had suggested the patch at one time but since the back pain is from tailbone to skull he said not an option. Only if the pain was is a small area.

    Well got a letter in the mail yesterday that my mo is retiring. Kinda seen it coming. He is rarely there now due to his own med problems. So hoping I get to see him again before he leaves. I have an appt on the 20th. No idea how to pick a different mo from his office. I've had the same mo since 2002. I know him and he knows everything about me. Hoping my mo will give me am idea which mo really fits what I am looking for. Yesterday when I got the letter I kinds freaked out. I have known and trusted mo over 12 years. Then I got kinda excited. Seems maybe my mo been so sick himself maybe he hadn't stayed current in new tx. There are 3 other mos in the clinic : 1 is a def no have heard tons if patient , nurses both at hospital and the clinic day his bedside manner is zero. That leaves 2. One is older, more experienced and the other is very young / grad college 2006 then residency- not long on his own not much experience but maybe more up to date on what's new and more eager to learn and help. Any suggestions anyone ?

    Hootie hoo to all