Chronic Pain

Harley

I'm sorry I did not mean to upset you, I just wanted to share the site with you and make you aware of the types of opinions out there that we all have to deal with and get through. I've found it helpful to know what types of criteria some doctors may being going by. the network is actually a site for patient advocacy and they help alot of people fight for the proper treatment for their pain.
I've also found that no matter what, just about every person in pain is going to exibit the symptoms or criteria that the doctors are using to denie or decide a patient is a drug seeker. that's what is so rediculous about the whole thing. When a person is in as much pain as you & I, they are going to seek relief, period......

I did not want to offend you and certainly was not implying anything by giving you the link. I just thought it might help you when you do talk to your doctor, to know what they may be thinking.

Well I hope you had a nice weekend. I had a good one, but of course over did it a bit and now I'm paying for it, so I've rested all afternoon and will probably be in pain all day tomorrow too. Hoping that tuesday I can go to town to visit my elderly friend. She's the only normal friend I have (other than internet pain friends) She has RA and is 93 so she understands pain really well. So she's the only one who will put up with me and my pain as she shares in it with her own. lol
I help her with doctors apts, her bills, her meds, etc. She cannot operate a phone tree and so cannot even understand how to order her meds or get through to the doctors office. So she has me take care of it. Then we just visit with each other. She does not have any kids, so I'm like her only friend too. She's really cool though and I just love her.

Well, I'll talk to you later, hugs & love
Betty

Hey, Betty..

I'll make it short and sweet since the meds are messing with me BIG TIME!

You didn't offend me at all! It was very informative. Why I got all upity was because I knew all along that they were looking at me funny when I'd ask for this pain med, or to try another one. It's terrible that people like us have to fight for pain management! It's just simply ridiculous that we'd have to go through this because we're informed of what meds do what and how much can be taken, when it can be taken, and what it can be taken with. After a short period of trial and error, anyone with an IQ higher than a jar of mayo would start to figure this out.. gahhh..

I took a step in getting a better bed in hopes that it'll help me actually get some sleep. A furniture place nearby was going out of business, so I talked my happy butt into a brand new waterbed with solid oak stands and drawers - origianlly listed at $1700 before taxes.. got it for $750 TOTAL (including taxes, heaters, thermostat, delivery, and installation.. yea, I'm pleased with myself! lol.

Anyways, glad you had some action and adventure. I overdid it, too.. now begins the "payment" process of actually living a life. I think I'm going to try get some sleep (also got a "sleep therapy" noise machine) and work on designing my tattoo.. glad you've got a partner in pain over there. People don't realize how much it helps to have a friend that goes through the same pain (and all the drama that comes with) and can honestly say they know how you feel! You're great person to help her out with getting around!

Anyways, have a good night! Be comfortable. Remember that the shuttle lauches on the 11th at 2.20a EDT.. (that's 11p for me in los angeles)! Send my love to your friend as well!

Harley

Hello Harley
Good to hear from you again.

Ah, the bed ordeal. lol
Since my pain started we've had to switch beds 4 times. lol
We finally bought a king size pillow top with the 4" memory foam pad under the pillow top. It has really helped and I am not nearly as stiff in the am, as I was with our old bed. The memory foam holds the heat in, so it makes a very warm spot under your body, kind of like a warm pad with out the electricity.
Before we got this bed, I could not even walk to the bathroom in the am, I had to have my husband get my meds, take them and wait a 1/2 hour before moving. Now I can just gradually get to a sitting position and then get up without having to wait the 1/2 hour. It's much nicer and I'm not nearly as stiff.
I've heard wather beds really help with the am pain & the night discomfort, so I'm really curious if you find the warmth helpful. We had a waterbed for years when we were younger, but when we moved into this house, we got a new bed and did away with the water bed.. Probably dumb move. Let me know what you think of yours. Great buy, you must be a good negotiator! lol

Well, todays my quiet day, I'm really worn out from my weekend activities and I want to regain some energy, so I can go to my lady friends to morrow and take her to her hair apt. I also have to take her dog to the groomer in the morning, so I'll spend some time visiting too.

I don't have anything much planned for today, hopefully I'll not be stricken with insomnia tonight and can get a good nights sleep. For some reason, when I do have more activities it makes the insomnia worse, so I don't get enough sleep on activity days either? who knows? it's always something.

I hope you have a nice day, take care of your self and I'll talk to you later hon.
Hugs
Betty

Hello, Betty!

Quiet days are always nice. I look forward to the times that my brothers and their friends aren't running in and out the door every 3min, my mom is at work or busy out and about, and my dad is off doing something else. lol. I know it goes against the whole, "I don't want to be alone" thing, but sometimes just having the peace and quiet is a good thing. I'll even put the doggies in the backyard all day just so I won't have to hear them barking at everything that moves. I call the big doggie Harriet the Spy because she'll sit in the window just looking for things to bark at. lol. She's weird like that.

I'd love to have a Tempurpedic, or at least the matteras topper, but I can't swing it. The bed I have now is sagging in the middle even though I've only had it for 2yrs. I had a waterbed before then, and it helped tremendously with the pain and discomfort. I was so unhappy when the matteras popped on my birthday 2yrs ago and I had to replace it! I was just going to get another water matteras, but they're still like $400, my mom decided that I should get a regular bed instead. Since she was footing the bill for it, I didn't really get a choice in it. The thing about the waterbeds is that sometimes it can be really hard to get out of them. lol. It's an aquired skill. I've noticed that if you just kind of roll out the side, it works best and there's a minimal amount of strain. I also got some water bumpers to go along the sides so that the "morning roll" would be as painless as possilbe - no rolling over the hardwood sidebars!

I actually have some happy news in the dating department to report. I've been single for 3yrs now, and I've generally been okay with it, but a guy I had been talking to a long time ago has recently come back into my life. He's so nice. His dad has chronic pain and fatigue, so he totally gets what I'm going through! It's nice to have someone who won't get mad at me when I say that the meds are messing with me and can't come play. He's just a sweetheart. He's also a tattoo artist. We designed a nice little piece of artwork he's going to put on me. Since the ocean is really important to me, we put together a piece of artwork with a dolphin (in line art) and Hawaiian flowers around it. Nothing big and nothing overdone. It's very simple and elegant! He'll probably come over tomorrow and get part of it done, and then I can post a pic of it for ya to see! This is something I've always wanted, and it'll be nice to actually get it. I figure, heck, I'm not going to get better, so I might as well do it while I still can.

Anyways, the Norco is all over my head right now. lol. I've probably been rambling quite a bit. Have a great evening! Hopefully you'll have a calm, but functional day tomorrow. Getting out and doing things to make yourself feel "pretty" is a good thing. I've even started wearing dresses again (I don't get to wear them out, but I march around the house in them! lol).

Goodnight!

Much luv,
Harley

Hello Harley my dear

Sounds like your doing well, or as good as we paniacs get. lol
Great to hear you've got a man in your life. I am so excited for you. He sounds perfect too.

I'm not feeling all that great, I'm in the middle of a fibro flare and been in bed for 2 days, so I've got to get back to bed. I'll try and get back as soon as I am able.

Big Hugs & much love. I'm really happy for you. You go girl!

Hugs
Betty

Awww, Betty! I'm so sorry to hear about the flare up!! That totally bites!! I'll send some of my SoCali Sunshine your way and all the good mojo the postal service will deliver!

*Hugs*
~Harley

Hello again Ms. Harley

I hope all is going well for you and your new guy. Did you guys get your tatoo design all figured out?

I had a tatoo for my 40th birthday, I never thought in a million years I'd do it, but I had a heart with a wreath around it with my sons name in it put on the back of my left shoulder. A friend did it for me. It's the son that died in 2002. Seven of his friends had tatoos with his name put on them in all different styles and I had to join the kids. His girlfriend even had one done, I was just wondering how her husband likes her tatoo, just the other day.
I just had to join the kids, so I said what the heck and did it.
I hope yours turns out good. I like mine

I'm doing a bit better and can finally put together a sentance, so I think I shall live. lol

I don't feel as bad as I have and can stay out of bed or keep from layingdown the whole time too. thats always a blessing. I got your mojo the other day, it really helped. ((((giggle)))) I'm still waitin on the SoCal sunshine though, must be a heavier package.

Talk to ya soon honey
Betty

Hey, Betty!

Glad you got the mojo I sent! lol. There's a bit of a back order on the sunshine, though. Hopefully it'll reach you soon enough! Good to hear that you're feeling a bit better!

I have myself somewhat of a busy weekend. It starts off with a GREAT new doctor (who also happens to be a former astronaut - canadian!) who actually believed every single word I said! He's taking me off of the painkillers because he said he noticed that the meds are making it hard for me to explain exactly what's going on. He said I had every right to kick, scream, yell, and break as much stuff as I want to (yay! lol) in order to get off of the opiates, and that I can take them at night or when things really suck a fat one, big time. That was Friday, and I'm down to just about 1 pill a day (norco). It hurts, I'm not going to lie, but my head is clearing up and I've noticed that I'm starting to be able to explain myself a lot better (excluding the lack of sleep factor.. lol) than before. I've also gotten my appitite back - I'm basically fiending for anything with comfort calories in it (pizza and all that jazz). I expect to put on 15lbs or so from this, but hey, once I can exercise, that's easily lost.. lol..

Anyways, have a great week! Feel better! Enjoy the mojo and expect sunshine soon! For an added bonus, I'm trying to get up some video I shot yesterday down in Long Beach, CA. We went on a boat for Andy's birthday and played with about 40 Bottlenose Dolphins - once I get the link up and running, I'll post it for ya!

Much luv and sunshine,
Harley

Hello again my Harley

Your weekend on the boat and playing with the dolphins sounds just wonderful. I would really like to see the video too. How cool.

Your sunshine makes me so envious, we've had nothing but rain storms, one after the other. cold, wet damp. yuk!
When the sun has come out, it's only been momentary and then the next clouds rolls by and dumps a bunch of rain first.

Hubbies been home for the past few days, it's been really nice and I'm glad that the poor man got some rest. He's had the worst cold and worked all the way through it, so the last 4 days he's been off work and he really needed it badly. We just stayed home and that's always nice & easy for me.

Our son called last night to let us know he was excepted to pharmacy school up at the Uof Washington and we are all on cloud nine. He was chosen 65 out of 800> and they only took 80 students into next falls program. So we are very proud happy parents.

I'm really glad that you got into a good doctor, who is listening & believing you too. that's great news. Hope your able to regain some of your life back and get out to do the things that young women your age should be doing and not having to spend time talking with old broken down women like me. lol

I can really understand why you would be irritated with your cognitive functions, sometimes these meds can really effect us. I've just grown used to them and I guess used to not having a memory. Did you ever say that you had FM. I'm asking, cuz a symptom of FM is a foggy head and I've even gotten myself into situations in a flare, that I cannot talk on the phone or talk about or explain anything. So just a thought. I just don't remember whether you said you had FM. My symptoms are showing (((((Giggle))))))

You have a wonderful day, it's good to see some spunk & joy in your voice. Starting a new relationship can always be good for the soul. Getting out helps too huh?

Hugs girl friend
Betty

Hey, Betty! How ya doing today?? Hope life finds you more comfy!

Sorry it took so long to get this up and running, MySpace was being a pain in the you-know-what.. but, here's my dolphin video: http://myspacetv.com/index.cfm?fuseaction=vids.individual&videoid=30649886

That would be the condensed version, they actually played with us for over 20min, but it won't let me upload the full version - go fig.

Enjoy!
~Harley

And, to answer your question: no, I don't have Fibromyalsia - it's more like Lupus with me, I get the hurt and the sick.. fun, ain't it? lol

Hello Harley my dear friend

I will try to watch your video, but unfortuately for me, I have this crummy dial up connection here at home and I normally am not able to really be able to appreciate watching a video very well, but I will do as I normally do and take my lappy to town and use a normal wireless connection at my mothers house and watch the video there. thanks so much for letting me see what fun you both had. what a lovely date out on a boat.

I hope you & your man friend are still doing well, nothing like bringing some love connection into ones life to cheer you up. Seems a bit like fate to have a young man that has a father with chronic pain & understand chronic illness better than the usual people to find you and begin a romantic relationship. Wow, that's just perfect. What a loverly blessing for you honey.

Have a great weekend and a splendid Easter
Betty

Aloha, my friend!

Sorry it's been awhile since I last posted. I've actually been doing good these past few days! I'm starting to come down off of my little high, but it's ok, I had a good run for the past week or so.

Let's see. Where to begin? Um, ok, well this past weekend, I was in Las Vegas with my mom, my BFF, Jeff, and my mom's coworker. We had some shenanigans, but didn't do too much. Of course I had to go and play with Sgt Pepper at the Mirage (cutest baby dolphin you'll ever see!) and get into a huge water fight with him (of course no video.. poopie). After walking around for most of the day, we left Sunday morning so I can get home and get on down to Disneyland - another 2hr drive - to see AJ McLean of the Backstreet Boys perform his first solo show (now, that I have pics of! lol) which was amazing! I'm still recovering from all my nonsense, but, all in all, it was great! It's even been above 80F the whole time - woohoo!!

How have you been? Feeling a bit better, I hope! How was your Easter?

High 5's and Hugs,
Harley

Hey Hey missy

Now that's what I'm talkin about!
I'm just tickled pink, you've been out & about doing all the great things that younger folks are supposed to be doing. Now that was truely a big weekend.
How fun! Vegas is a really fun place. My family really enjoys our trips to vegas. Our son just turned 21 and he & all his friends with girlfriends all went to vegas to celebrate his & another friends 21st birthdays. So My sons first legal drink was in vegas. For some strange reason, he did not invite mom & dad. I'm still teasing him about that one. lol
My sons home on spring break and I don't remember if I told you or not, but my boy just got his exceptance from the UofW phamacy school. He made it in this falls class of pham students. Yea, yea, yea!!!!!!!! I've been praying for months on that one. He's set for another 4 years of college and when he gets done, I'll be calling him Doctor.
I'm really hoping that his mothers illness & having to watch his mom deal with chronic pain will help him to be a much more concerned and considerate phamacist when it comes to pain patients. I don't mean being lax in his dispensing, just more considerate while his working with their docs and taking care of their dispensing, treating them better etc.

We've had some nice days, but that aweful cold white stuff is back today and tonight. The snow level came down to 500 ft level and our home is at 1,500 ft, so of course when a shower passes over it's just the white stuff. I'm so burnt out on snow, I could just scream!

I'm actually feeling pretty well though, so that's alright. Went to town to visit my lady friend and make sure her bills were paid & groceries ordered & put away. She's a kick in the pants, but I sure worry bout her sometimes. Other than that, I'm really enjoying have my son at home and we plan to go into the verizon store in the AM to get him a new cell phone and make a few changes to our cell bill. I'd like to get his fiance a new phone too, but I'll wait and see what he thinks or whether he thinks she would mind if he picks it out. My son, his girl friend & I are on the same family plan together, it really cuts down on minutes by putting her on our plan cuz we have that free in-calling, so it just makes sense.

Well, I'll not bore you honey. I'm so happy for you, you sound great. Make sure you get proper sleep and you might be able to hold off a flare as long as you get good sleep, so I really hope your on your way outa or controlling this dreaded pain illness we all have.

Take Care kiddo, Warm loving thoughts & Big Gentle Hugs
Betty

Hello, Betty, my friend! How are you? I hope some of my sunshiny mojo has hit out by you! It's been beautiful outside this past week - well, we had some clouds, but all is good. Starting to finally look like summer!

Despite the pneumonia, which has grabbed ahold of me for the past week or so, I've been up doing stuff. I've been hanging out with Jeff and Andrew, and I've even been working in my garden! It's time to start getting things planted so I can have some fresh fruits and veggies for the summer!

How have you been? What's new?

Much luv,
Harley

Harley!

Hows my girlfriend?
I'm really happy to hear your still hanging with your friends and having fun in the sun. Planting some garden veggies/fruits sounds really great. I'bet they grow well in your sunshiney area.

I'm doing just fine, working things out and still hoping for more warmer temps. We have a day or two of sun, then we're back to snow & rain. Sping just cannot quite come through, but should be here soon.

My pain has come back down some, so I'm doing better in that department too. I hope your pnemonia clears up soon and does not get you down too far. Be sure you get your rest and take care of your self.

Big Hugs for my dear young friend. Thanks for letting me know how life's treating you.
TTFN
Betty