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.

Wow, I'm being read!

When I woke up today, there was an email waiting for me from a man who had read my blog. Judging by the timestamp on his email, he found it and read it just a couple hours after I got it started. I can't say how thrilled I am! I really didn't expect anyone to be interested in my ramblings. Heh.

So thanks Fred. First for reading and second for letting me know you had read my posts. That's just what I needed to keep on, keeping on with this.

LC

Anti Smokers need to get a grip

Pet peeve time.

I read the stories in the paper and I hear them whine. I experience them treat me as a 3rd class citizen who is worthy of nothing but death or a life of exile. Funny thing is, if I quit smoking, I more than likely WILL die.

You can easily find stories about how bad smoking is, but how often do you read stories about the people it helps? Most people are totally unaware that for people with Colitis and a few with Crohn's Disease, smoking helps keep our disease less active and even in total remission for some. Now given the choice of consuming very addictive, dangerous drugs or smoking a cigarette to keep my gut calm, which do you really think I will choose first? For non smokers with IBD (Irritable Bowel Disease), doctors will have them try the patch and it has been known to help almost as much as smoking.

Before anyone goes off on me, let me explain. I have what is called a pardoxical reaction to most drugs, cigarettes included. If I gave you one of my Lortab 10's that I take for the pain, chances are you would get very tired and need to go lay down. I get the opposite reaction, they wake me up. If you took some benedryl to help you get to sleep, you'd get a great night's worth. If I take it, I will be climbing the walls and unable to sleep till it wears off.

The same goes for how cigarettes work in me for my Crohn's. Where most Crohnies are worse off from smoking, as opposed to those with Colitis who cigarettes help (as I explained above), my paradoxical reaction makes me get the same benefit those with Colitis get. The one time I did quit smoking, trying to pacify an ex boyfriend (notice the *ex*), is what started the flare from hell that has taken over the past 10 years of my life. I ended up having surgery and losing a little over a foot of my small bowel, had my uterus removed, had to have the wall of skin/muscle between my vaginal and anal cavities rebuilt and spent 4 years in a wheelchair due to being too weak and having too much pain to walk on my own.

Now tell me again that I shouldn't smoke. ==========~~~

I will give non smokers credit, they are making life as hard on smokers as possible. They bitch and whine until the taxes are raised higher and higher each year. So that leaves me in a spot where I have a choice, I can buy food or smokes .. I'll buy the smokes. I can handle hunger pains a lot easier than the gut pain I get from a bad Crohn's flare. Even though I do buy online, they still are expensive, especially when I'm on a very limited income.

Of course, having Crohn's means I don't absorb food normally, so I'm horribly underweight as it is. When I can't afford a lot of food, due to the ever increasing cost of cigarettes, they again are bringing me closer to my grave. Hey, works for me, if you can't get them to stop smoking, just make them die and be rid of them once and for all.

It's too bad that they have the media so wrapped up in their hands that the other side of smoking isn't ever told. I wish all those do-gooders could spend one day in my shoes. I have a feeling they would walk away from it with a total change of heart.

LC

Morning sucks

Well, it's another day in the room. I keep a 3rd shift schedule, so my 'morning' is when I wake up for my day, normally around 2 pm Arizona time. The first hour of my day is spent getting pain meds in me so I am out of pain and doing potty runs. Guess I'm basically saying the first hour or two of my day are trashed, I can't plan on doing anything, due to needing to be near a bathroom until the sweet side effect of the hydrocodone hits me and it stops my guts up for the rest of the day. I only did 3 potty runs this morning so far, may turn out to be a good day after all.

I opened up the shutters so I can see out my window. I was greeted by some of the birds I feed. Sitting on the railing, staring in at me were 2 pigeons, 2 doves and quite a few sparrows. They know I will be tossing out seed for them between 4 and 5 pm, so I'm assured they go to bed tonight with full tummies. The palm trees across the street are steady, so it seems the high wind gusts we had yesterday have gone away today. The palms are gently swaying and are very pretty. Don't see anyone walking down the street to the grocery store across the street from us, nor do I see any medivacs flying into the trauma center at the hospital a mile away. Guess everyone is busy doing other things today and not hurting themselves while doing whatever! This is a good thing.

Ah hah. My outside birds are now making enough racket that it woke up my inside birds. My beloved Cockatiel, named Cleo, is sitting on 4 eggies at the moment. I can hear her mate, Elmo, in the cage talking to her. They are first time parents, so I wasn't sure how all this would go down, but so far so good. They have been the best parents to their eggs that I could imagine and I've been thrilled watching this all happen. The eggs are due to start hatching in another week.

I got Cleo in 1998, just before I got so sick and almost died. I dropped to 72 pounds and was so weak I had to use a wheelchair to get around. I spent most of my time lying on the couch in pain and misery back then, but the love of that little bird helped get me thru. She spent all her time on top of me, never wanting to leave my side, even if tempted with her favorite food. She took care of her momma, just like I took care of her when she was a baby. (I hand fed her, then weaned her onto real food.)

Cleo started laying eggs when she turned about 3 years old. We didn't have a mate for her back then though, so of course they didn't hatch. I saw how badly she wanted to be a momma and my heart went out to her. She kept laying eggs a few times a year. This year when I was talking to the new manager of our apt. complex, he told me he had 2 male cockies. I immediately asked him if I could borrow one of his males and he said 'sure, which one do you want?' We ended up bringing both males up here for a week or so and let Cleo meet them. I picked the younger one for a couple of reasons. He was calmer than the older one and he was closest to Cleo's own age.

Soooooo....here we sit today with Elmo and Cleo and their 4 eggs. Neither of the birds had been bred before, so we weren't sure if they would know what to do .. LOL. I didn't need to worry, they knew! Their first night in the same cage together was all they needed to get started. A few days after that, the first egg was laid. This time it was like Cleo really did know it was different, this time they were gonna hatch. She was soooo excited and kept showing off her eggie to me. I, of course, made a big deal about it to her and you could just see the pride she had. :)

LC

Who am I

I am many things to many people. I'm sure their opinions of me would vary depending on whom you would question. I've been raped, robbed, stabbed, lied to, cheated on, burned out of my home, and my first husband was murdered after only 1 year and 2 months of our marriage. (The perp got a whole 5 years in prison, but that's a whole 'nother story.)

I've traveled all over this great country of ours before I got so sick at the end of 1998 and I became homebound. I've lived many different lifestyles. I can talk about a big variety of subjects, most from personal experience. I don't say this to brag, far from it. Some of the things I've been thru I wouldn't wish on my worst enemy. I do speak out though, for I feel if by talking about it all, I can save one person from making the same mistakes in their life and they avoid the pain I've known, then it was all worth it.

My physical pain won't ever go away though, even though I've learned to deal with the mental. Crohn's is unrelenting for me. I must admit though I always get a kick out of the nurses when they ask me what my pain level is and I tell them 'I pass out from it'. Now you tell me, how do you rate passing out on a scale of 1 to 10? LOL. They normally mark 10 and move on to the next question with a puzzled look on their faces, if not one of compassion. I don't need pity, I've learned to laugh at the times I've gone out like a light in the middle of the living room or bathroom floors. I give lying there like a lump a whole new meaning. :)

LC

My View From The Room

Howdy. I guess I should explain why I named this blog the way I did. It's really rather simple. I view the world from behind the sliding glass doors in my living room. I am what they generally call a Chronic Pain Patient. I have Crohn's Disease, a bubbling skin disease called EBA (Epidermolysis Bullosa Acquisita) that 4 out of every million people with Crohn's get and Fibromyalgia. Due to the diseases, I am for the most part homebound and my waking hours are spent online doing something to keep me busy. My computer desk sits next to the sliding glass windows that lead out onto a big balcony, thus the name of this blog.

It's more than a window, it's my view to the rest of the world as I sit here every day. I can see the beautiful, tall buildings of uptown Phoenix thru it and watch the wild birds I feed out on the balcony every day. My window brings me great joy or great sadness, depending on my mood.

I decided to make this blog, so I have a place to talk about my life, or lack thereof. I don't think people who've never been chronically ill realize what's it like to be stuck inside day after day after day. If I can help explain what goes thru the head of someone such as myself, then my goal will be accomplished and you will truly appreciate your life so much more.

I hope I don't bore anyone to death or offend. If I do, it's not intentional. I've never been known for being politically correct, I tend to call things as I see them.

LC


My view from the room.