I HATE Prednisone!

*Sigh* I can deal with some of the side effects that Prednisone gives me, but there are a couple I can't. Depression being one of them (instant death the other, LOL). Normally I get either the 'speedy' or 'always hungry' side effects, which are much easier to deal with. Sitting around crying my eyes out all day yesterday was something I don't really care to do a repeat preformance of any time soon. I decided not to take any Pred today and maybe not even for a couple more days to let all of it get out of my system. (This depends on how badly my hands blister up when I don't take it.) When the side effects are worse than the benefits, I know it's time to take a break. Then I will go back on it and see what side effects I develop the next go round. Each time is different with this damned drug.

At least this time I was on it long enough that my left hand didn't follow the right and only broke out in a few places. The right hand had enough time to heal up some and I'm able to type again fairly well without too much pain. I know I do need a few more days to a week on it to totally stop this flare of the skin disease, but the depression was just too great and I have to wait awhile before taking it again.

Well, we got our Lingo unit so we could finally have a phone again here. It seemed like a real easy setup, but then I tried to use it and everyone I tried to call couldn't hear me well. I kept breaking up, even though I could hear them just fine. I called Lingo and talked to a few of their techs and we began the trouble shooting. Now I'm the first to admit I'm mostly geek, but this one really had me stumped.

One tech had me go to a website and run a bandwidth check. Now I've done this in the past and all was always fine, but not this time. I had bandwidth between dial up and ISDN .. with cable! My next call was to Cox Cable. They sent a tech out here Friday and he knew immediately what it was. Cox upgraded recently and in doing that, it made our old modem unable to keep up. We had no choice but to buy a new modem that could handle the faster upload speed needed to power the phone and our computers. Thank God they will put the cost on our next bill so we have a little time to save up for it or we couldn't have done this.

Then, the next problem happened. If the phone is hooked up, my computer can't get online. The tech never did figure out how it worked with the old modem, he said that shouldn't have happened. The new modem is hooked up the same, but the phone grabs my IP and refuses to pass it along to my computer. We now need a router if we want the phone and computer to work at the same time. So now I have a phone and can't use it. LOL. Payday is tomorrow, so after my hubby cashes his check he will run down to Staples and pick us up a router. Once I hook up the router everything will work as it should finally.

Last, I just wanted to say Happy Father's Day to all you Dads reading this today. Hope you are having a wonderful day!

Doctor Visit

Hey boys and girls. I just got home from my doctor's office. I talked with him about my pain meds not working as well any longer and my being aware of the fact I can't afford Oxycontin or MS Contin (morphine), which is what he'd prefer I be taking over the short half life Lortab 10's. He checked his reference book and the DEA allows people to take 6 a day before they start looking funny at you, so he was able to increase my dose to 6 a day from 4.

We also discussed my hands and all the information I've found out about them doing online research. He referred me to a skin doc to call when I can afford the visit. That doc can do the skin test I need to verify I do have EBA and from there I can apply for help from Social Security and get medical coverage. I'm going to ask our church if they can help cover the cost of the visit after I find out what they charge. That would help me get in sooner and get all this started.

My doc told me he could feel a mass/obstruction in the bowel as he was pressing on it. Told him 'how can there be anything in there when I spent the hour before coming in here in the bathroom?' He said 'you didn't get it all out, you'll go more later'. *sigh* ....and I wonder why I hurt.

Last I had a talk with him about my worse fear .. the outright terror of running out of meds and going into withdrawal. He told me he's not the doctors I had in the past who did that to me and he never will, so I needed to knock that kind of silly thinking off. He reminded me I can call him at any time that I need him and he will call in a refill for me. I must admit, that did put my mind at ease. There's not much worse than doing a forced detox when your head isn't in the right place. I love this doctor so much, he really cares for me and talks to me. He's not like others that have hurt me so bad in my past.

I'm also gonna take Prednisone daily for awhile since that is the only thing that seems to keep my hands somewhat under control. I still have some here, so didn't have the doc call me in any this visit. When I get near the end of what I have, I'll have the pharmacy fax him and he'll refill it for me then.

Sooooo, all in all today turned out good. The only part I hate is the resulting gut pain after I get poked and prodded, but I know that has to be done, so I deal with it. :)

LC

My New Boyfriend

I went downstairs a bit ago and met my new boyfriend. He decided to come out from under his rock and hug on me for awhile. He's just so cute I decided I must have a picture of us together to share with everyone who reads this blog. I brought him upstairs to my apartment and here is the picture I took of he and I.


Who can think up a good name for him?

What I was really doing was checking to see if our manager was down there. He wasn't, but being the rockhound I am (I do lapidary when my hands allow), the big new jasper rock he put out caught my eye. When I picked up one of the rocks, I found the lizard under it. Not sure what kind he is, but he sure was friendly.

As you know from my previous post today, I've been dealing with quite a bit of pain. Funny how something so simple as a friendly critter can brighten up your day. I owe this little guy quite a lot, he made me smile again.

LC

Ouch!

Crohn's Disease can affect more than just the digestive system. 4 out of every million Crohnies get a bubbling skin disease and I'm one of those 4. My hands break out with tiny water blisters all over them, which then itch, burn, hurt and seep until I break them open. I sit every morning in the bright sunlight from my window and again at night under a 100 watt bulb in my desk lamp and pop the little suckers. I've had doctors in the past tell me it was just eczema, but I did research online and found out what I'm really dealing with. They also told me not to pop them, which I tried a few times. All it got me was groups of blisters which then broke open into HUGE sores. I went back to popping them as I see them develop.

Blisters on the hands may not sound like much to most. Here is a picture taken some years ago during a flare I did by putting my hands on a scanner.


Flare of 1998

At the moment my hands are about half this bad, but getting worse every day. I'm taking Prednisone, which usually helps get a flare under control, but not having much luck this time. Some days I think the side effect of 'instant death' from Prednisone is almost better than dealing with the pain these hands cause when they flare bad. *sigh*

Hope this finds everyone having a better day than I am.

LC

What Is My Name?!?

Heh, anyone following this blog is probably totally confused by this point about what my name really is. If you read the notes posted on the TagBoard, you will see me being called different ones by different people.

I'm an reunited adoptee. I was adopted at birth, but in 1991 I was reunited with my birth family .. mom, dad, aunts, uncles and 11 brothers and sisters. One of the first things I asked was what my bmom (birth mom) named me when I was born, since my aparents (adoptive parents) didn't know what it was. My bmom told me she had named me Lorraine Comeno, thus the LComeno nickname I use in here. See .. and all this time you though I was a combo car/truck and couldn't spell it's name right! (Some call me Elsie though and do cow jokes. LOL.)

My aparents named me Nancy. You will see people who know me in real life call me by that name often. In IRC, I use the nick of BikerBabe, so people who know me from there call me BB.

Hope this helps make the different names a little clearer than mud for you, now that I've explained where they all come from. :)

LC

The New Tagboard

Howdy folks. For those that have been here before, you will have noticed I added in a tagboard for you to leave quick messages on. It's *free* software, but unfortunately that means it comes with a popup. I'm sorry about that. As soon as I can come up with 20 bucks I will send it to them and get the more advanced version that has no popups to bother you.

LC

My No Good Daughter!!!

Hah! That title got your attention I bet. :)

Sammi (Samantha) is my daughter. In my heart she's always gonna be that little girl in the pink diaper with the XMas bow stuck on the back end of them. In reality, she's almost 19 years old now.


Sammi and I in summer of 2002.

Isn't she beautiful? She lives a couple states away from me these days and I miss her so. At least we have IM and can talk online almost every day. Just got done talking to her a short time ago in fact.

Sammi is a sweet girl who would *never* think of picking on anyone. OK, so she was my biggest baby size wise and to this day she hasn't let her 2 brothers forget that. Sooo, she's come into IRC a few times when there were net friends of mine in the channel who didn't know her and greeted me with 'whore' to which I replied 'slut'. Then there was the day she decided she was gonna 'beat up' her step dad .. which ended up with her on her belly, on the living room floor, handcuffed behind her back. You gotta love her, the girl has spunk! (Not to mention my warped sense of humor. LOL.)

I remember when she turned 13. That's when I informed her that I no longer knew anything because she was now a teenager, so she was on her own for decisions. Heh, it worked. She and I have always had an open line of communication and she knows she can talk to me about anything. Does some of it hurt? Sure it does, that's normal and happens to all parents. I'd rather talk over with her whatever she wants to discuss than not hear it though. I want the best for her and for that to happen, she and I need to be able to talk about any and all subjects. I learned long ago it's better to act than react and that applies double when dealing with kids.

I love this young lady more than words can say and I pray she knows that. When I learned from the sonogram I was going to have a daughter, I admit I was scared. I had grown up with all boys and have always related to guys better than girls. Then she was born and she took my breath away. All the fear was gone that quickly and she and I are like two peas in a pod almost all of the time.

I love you Sammi!

LC

Music Calms The Soul

My husband doesn't like most forms of music, so normally this place is quiet as a morgue. Neither of us watch TV either really. I sometimes turn on CourtTV or A & E to watch the crime shows, but that's really it. Once in a long while, when we can afford it, we will rent a movie.

I grew up playing first chair clarinet in the school band and sang in the choir. I also play flute and saxaphone. As an adult I taught country/western dance for awhile in a nice club in South Florida. Music has always been part of my life, a big part of me and who I am. On the occasions I feel like singing along with a song, you got your pick which I will do .. harmony or melody, with a 3 octave range.

I go to meetings with one of the admin from my addiction forum on the average of once a month, where we meet with the man who handles all the code on it. They both like music, so I always take along my ghetto blaster one of them bought me, my fav CD's and let 'em rip! When I'm home though, I usually don't have it on.

Then there are times like today where I'm so friggin' bored and on the verge of depression. That's when I start grabbing for the CD's the guys have bought for me when we're together for the meetings and put them on. At the moment I'm listening to 'The Heart of Chicago 1967-1997'. Growing up an hour from the city of Chitown, their music always brings back good memories for me. I sing along and find a reason to smile again.

LC

Mr Pissy

For the past 1 1/2 years I've been feeding the birds in this area off my balcony. I started feeding 3 little sparrows, who told the rest of their flock about this joint. In a week's time I had about 30 to 40 sparrows coming daily to eat. Then of course nature took it's course and they expanded their flock each spring. Now I have about 50 to 60 sparrows.

After the sparrows came the mockingbirds, curved bill thrashers, pigeons, house finches (look like sparrows but have a red head and chest), little doves and bigger white winged doves. Mr Pissy is a white winged dove.

As I'm typing this I'm hearing Mr Pissy moan and groan out there as he eats. I'm seeing him try to beat up a pigeon to get his aggressions out. You'd think after that pigeon kicked his butt quite a few times, he'd learn ....

He's an odd bird. He has no problem with the smaller birds, but really doesn't like any other white winged doves or pigeons eating when he's here trying to eat. He does his best to intimidate them and chase them away. I have yet to figure out why, as I put out plenty of food for everyone.

At first I thought he was just upset that his mate wouldn't let him do what he wanted to do with her. When here she wanted to eat, not mate. That can't be it though, because I've seen him chase the other birds recently, even when she's not with him. Guess he just has a bad attitude.

Funny thing is, he KNOWS he's being bad. He will stand out on the balcony and look inside the window at me after he tries to fight with the other birds. I usually yell at him to behave and point a finger at him. He'll then take off for awhile, but always comes back in the same bad mood. I don't even have to look out there anymore, I can hear his moaning and groaning and know he's out there.

...and that's who Mr Pissy is.

Weather Report for Phoenix

While reading the news online when I got up today, I noticed we are in for some cold weather come Thursday. I couldn't resist taking a screenshot and cropping it down to just the weather area and sharing it with you all.


Get out your winter coat on Thursday!

See all those tall buildings in the live webcam picture? I see a lot of those as I look out my window. I live in the area this cam points at. :)

LC

The Joy Of New Neighbors

I got my first introduction to our newest neighbors tonight just after getting out of the shower at 11 pm. Their rap music was so loud it was shaking the walls of my apartment .. and mine is up the stairs and around the corner 2 doors down around the corner. There were also kids outside in the courtyard screaming their brains out. Since this is the first time that's happened, I'm assuming it was their children.

Now we don't have a real phone, just too expensive. I still have our old cell phone though, so when yelling out for them to turn the music down didn't work, I called 911. They hung up on me. They don't consider noise an emergency. So I called back and explained to the lady who answered that I was homebound, didn't have a phone, couldn't get to a pay phone, so I couldn't call the main number and asked for her help. She hung up on me again.

I do have the ability to call out via my computer using a program called Skype, but it doesn't show a phone number on some that I call, so not all phones will take calls from me. The Phoenix PD is one of those. I did try calling their main number and it gave me the sound a fax machine makes and hung up. *sigh* I also tried to call the apt. manager, who's voicemail was full.

My husband was working tonight, so I ended up calling him at work and asking him to call the cops to come here and tell them to quiet down. I thought it would take awhile for an officer to get here, but to my surprise he was here in less than an hour. That's amazing in a city this size on a Saturday night.

Of course by the time the officer arrived here, they had turned the music down. He came up to my apartment and we chatted awhile. Very nice gentleman and VERY cute! LOL. Eye candy and good service, you can't beat that. (For anyone who may get upset by that last comment, my husband is a retired officer himself, so I say that in a good way. The officer was a fine looking man.) I was nice and didn't mug the officer for one of his patches either. Hehe, I collect police patches as a hobby, so if there are any officers out there reading this and you have an extra patch to spare .. please think of me!

Anyway, that's how my night has been going. Hope everyone reading this had a much quieter one than I did.

LC

The Drug From Hell

Since I touched on this earlier and didn't take it any further, I figure I better expand on it here. During my 2 years being unable to find a doctor to help me stay out of pain, I was forced to self medicate by going to a methadone clinic every day. I realize most people have never been around one, nor would want to. It wasn't my first, second or third choice, but it was the only option I had.

While I will say the clinic was professionally run and managed, methadone clinics are what they are. I also was the 'oddball out' since I wasn't a drug addict, but a pain patient. It took me some time to be 'accepted' by the other people who went there.

While going there I did hook up with the doctor who cares for me today, when I can afford to get in to see him. 75 bucks a pop isn't easy to come up with when your income is only 9 bucks an hour. He had never dealt with a patient coming off methadone and going back on to traditional pain meds before, so we entered unknown territory together. We both learned a lot and never want to repeat it.

First off he allowed me to have 2 Vicodin ES a day for the breakthrough pain the 100 mg of methadone didn't get. Our next plan was to start me on a taper off the methadone and then get me back on either Morphine (MS Contin) or Oxycontin. That is when my husband's job ceased to exist and I couldn't afford the $140.00 a month for the clinic. We immediately put me on 80 mg of Oxycontin and the 2 Vic ES a day. Wrong.

While that is a fairly high dose of Oxycontin, it didn't come close to stopping the withdrawals I experienced from the lack of methadone. Normal withdrawals from a painkiller with a long half life normally take you about 2 weeks to get over. (I know this from experience.) It took me a whole year to get rid of the majority of the withdrawal symptoms from the methadone ... to the point I had a near death experience. To this day I still don't remember the first 2 weeks coming off that crap.

Later on, after all was said and done, I looked up some conversion charts online and I would have had to take 500 mg of MS Contin or 300 mg of Oxycontin to equal the 100 mg of methadone. Neither my doctor nor I were aware of the drastic difference in the drugs, nor how methadone kills any tolerance you may have had.

I will acknowledge here that methadone was a wonderful pain killer, probably the best I've ever taken. The daily 'nod', the daily visits to the clinic to dose (only between 4 am and 11 am, fun on a 3rd shifter such as myself), the LONG waits before they allow you take home doses and the withdrawal from hell, just don't add up to making it worth taking. I only advise it to people who are assured they can afford it and who must be on it for the rest of their lives without ceasing. I'd hate to see anyone else go thru what I did getting off it. While it doesn't do that to everyone, I'm meeting more and more pain patients online who have had extended withdrawals from it.

LC

More pain

I told my GP doc I was still hurting and due to a past colonoscopy that was done on me, I knew that my uterus was tilted and pressing into my colon, causing me to have horrible bowel obstructions.

http://www.xworld.org/pix/belly.jpg

I'm not pregnant there. That belly is caused by a bowel obstruction. Do you know what they did for it? Nothing! I was tossed into the hospital for a few days, but all they did in there was to tell me I needed an enema. Sheesh! I could have done that at home. They brought me an enema kit and a nurse. I told the nurse to get lost, I was more than capable of doing it myself. Of course it didn't really help and they sent me home. At home I got out my real, good enema setup and gave them to myself over and over again, until I finally was able to get past the obstruction and clear the bowel.

I whined some more about my uterus being the cause of the problem and pain, so they sent me to some OB/GYN that was affiliated with the health clinic. All he did was do a Pap smear and tell me I was fine. Lot of good that did me. I asked to see another one and was told they no longer wanted me as a patient and to find help elsewhere. Keep in mind I was still taking the large amounts of painkiller each day and was medically addicted to it. They gave me a month's worth of meds and cut me loose.

I went to another clinic and they cut my meds in half, leaving me in withdrawal and pain. They sent me to another OB/GYN, who ended up being almost a repeat of the first one I saw. This one did run an ultrasound, but they did it with me lying down, so never saw the uterus doing it's thing, as that happened when I was sitting up. I asked to do the test sitting up and was refused. I was again told I was lying, the pain meds were what was making me hurt (that made a whole lot of sense) and there was nothing else they could do for me.

Having no where else to turn, I took matters into my own hands. I checked around and found a methadone clinic a mile from my home. I went there in my wheelchair and started dosing daily. In two weeks time I was out of pain enough to ride my bicycle the 2 mile round trip distance every day. (By that point our van had died anyway, so we had no way to get around except by bicycle.) I went to the clinic for 2 years as I kept on trying to find a doctor to help me.

Finally, I found a doctor who was willing to take me on. I'm still with this wonderful man to this day and love him dearly. He was the only doc in my life who I feel truly believed me when I said I hurt and didn't think I was a drug seeker. (I was also making the change from methadone over to more traditional pain meds at this time, which is another horror story for another time.)

He sent me to 6 OB/GYNs over the next 2 years to try to find one to help me. We finally did and I feel I owe him and her my life. When I explained to her I thought I had a rectocele and my uterus was tilted, she knew exactly the test I needed. She sent me to a local hospital, out patient, for a date with an X-Ray taking toilet. LOL. Yes, you heard me right. Never knew they made such a critter, but it sure did me right. I was vindicated!

As soon as the test results were back, she scheduled surgery to fix the rectocele (breakdown of the wall of skin/muscle between the vaginal and anal cavities caused by the Crohn's) and to remove the uterus. She did such an excellent job that I was out of bed and outside in a wheelchair having a smoke 6 to 8 hours after surgery.

When I went in for my post surgery exam, my OB/GYN told me that she had gotten the report back from pathology. It seems my cervix was infected and going into cancer. Funny, not ONE of the Pap tests all those other OB's did had come back abnormal. Thank God she listened to me and removed it, or I may not be here today writing this to y'all.

Another peeve

I've had Crohn's and the accompanying gut pain all my life. My mom first took me to a doctor for bowel related problems when I was 9 days old. I was ignored then and the doctors continued to ignore me until I finally found one to listen to me in 1998. Yes, you did the math right, that's 41 years. 41 long, painful years.

I realize a lot of people lie to get drugs from doctors. I run a forum where we help people detox from addictive drugs, so I'm pretty well versed in this area. HAD a doctor I went to for help thru my life had bothered to run tests on me though, they would have found my Crohn's and saved me a lot of pain and suffering. My question is why assume every young person who asks for pain relief is a drug seeker and not telling the truth?

I had been sick for a few years when I moved to Phoenix and was getting worse. I went from my normal 95 pounds down to 72 pounds. I was so weak I couldn't walk on my own and had to use a wheelchair. The ER referred me to a G.I. Doc, who instead of running tests, told me I was sick cause I smoked cigarettes. When I informed him I thought I had Crohn's and I had the gut pain years before I started smoking, he showed me out of his office.

At that point I could feel myself dying. I knew I couldn't just accept this doctor's bulls**t and had to press the issue. I walked across the street from his office to the office of the GP doctor and asked to be seen immediately. They were able to squeeze me in and thankfully he DID listen to me and ordered a barium gulp, iodine push, CT scan of my guts. That's when they found the Crohn's. The doctor also estimated I had about 2 weeks before I'd die if something wasn't done.

They put me on Prednisone, which stopped my immune system in it's tracks. That in turn stopped my body from thinking my guts were something bad and attacking them. They tried me on a couple of the Crohn's drugs, but I reacted badly to them and they didn't help anyway.

They put me on 400 mg of Morphine and 4 Vicodin ES a day and it still wasn't getting all of the pain. At least being on the meds I was finally able to eat something and not have to lay on the couch for an hour after screaming from the pain as the food passed thru my inflamed guts. That's when we knew I needed the surgery to remove the section of bowel that was so messed up. I had the surgeon take a picture of it after he removed it, be warned, it's not pretty.

http://www.xworld.org/pix/guts-03.jpg

The surgery did get me into remission for quite a few years, the problem was I still had gut pain ... but that would be another story and another surgery.