Oncologist Visit

I wasn't expecting the oncologist to do much, but boy did they make me nervous! He is a radiation oncologist so he doesn't do much (if anything, I'm not 100% sure though) with patients until they've been diagnoses with cancer ad referred for radiation. I called him because back in 2010 he was such a great help to me. he understood and knew about phyllodes tumors, and was willing to answer all my questions.

So I went to see him on Monday. As I said, I called to find out what I needed to do and the nurse called me back. Anyway, he remembered me and asked if I had the resection done. He had recommended the surgeon go back in and take some more tissue because he didn't agree that they had gotten a wide enough margin. I explained the surgeon refused to do it. He looked a bit angry but hid it fairly well. He then agreed that yes this thing in my back might be a phyllodes but he can't say for sure whether it is or not. I said I understood that but I just wanted to know if I was thinking correctly or if I was just going off half-cocked for nothing.

I understand docs have to be careful what they say to patients, and he was very careful how he worded things. But basically yes it could be a phyllodes, it could also be any number of other things. He said I need to see a neurosurgeon to have it evaluated and that it should be removed and biopsied. So nope I'm not over-reacting, which is nice to know since I am aware that I can do that at time. It is possibly a Phyllodes Tumor, but only way to be sure is biopsy.

Soooooo..time to get a neurosurgeon to see me.

Scared ..cancer recurrence?

Can I just hide behind the sofa now?

If you read my entry for Tuesday, where I talked about my doctor's appointment on Monday you'll know that when I asked my doctor about the cat scan results he said there was nothing spectacular going on with my spine and that my pelvis/SI joints came back as he expected. Yet again I am glad I do not totally trust my doctors on everything. I trust him to a point, same as he trusts me to a point. But from my experiences I have learned that doctors are very very busy, and as a result miss things, forget past illnesses of their patients, or flat out ignore them.

Yesterday, Wednesday, I received a copy of the cat scan results in the mail as I requested. (which was a pleasant surprise since I was expecting the receptionist to forget her promise to put it in the mail) Reading the report I came across something I hadn't heard of before, intraosseous hemangioma on my first lumbar vertebrae (L1). So I looked it up. Intraosseous means "on or within the bone" and hemangioma means "growth containing endothelial cells and blood vessels". So basically this means I have a growth of some sort (tumor) on my vertebrae at L1. What I read went on to talk about the various tumors an intraosseous hemangioma can turn out to be, many are cancerous (and yes Phyllodes is included) and a few are not.

Now I understand my doctor has hundreds of other patients and as a result it is difficult to remember every little thing their patients have been diagnosed with in the past. But to forget your patient had a rare cancerous tumor removed 18 months ago? Then to not even mention this growth when giving the test results seems wrong to me.

In June of 2010 I had a cancerous tumor called a Phyllodes tumor removed from my right breast. These are very very rare tumors, coounting for less than 1% of all breast cancer diagnoses in the USA. When they do recur as a spreading (metastasis) cancer, they most frequently show up on the lungs or the spine. They are not the usual breast cancer in that they are not ductal or lobal, they are a connective tissue tumor. Also they do not spread via the lymphatic system as most breast cancers do, they spread via blood vessels and contain endothelial cells. Endothelial cells are the cells which make up the lining of blood vessels.

I did inform my pain management doctors of this tumor and its removal because it meant I was having surgery. I did inform them of what little is known about these tumors, including that they do not respond to chemo or radiation and the recurrence rates etc. etc..I did not get additional meds for post surgical pain as my regular meds should have covered it, but I still had to inform them I was getting surgery. They were also informed that a benign/low level malignant Phyllodes tumor counts as a cancer diagnosis and if it recurs it can do so as a more malignant tumor and when they do they usually appear on the lungs or the spine.

Taking that into consideration do you think it might have crossed the doctor's mind that a tumor on my spine MIGHT be something he should mention to me and recommend I have it checked out considering the similarities between a hemangioma and a phyllodes tumor and considering I have already had a rare cancerous tumor removed 18 months ago?

I say HELL YES to that question. Instead I had to find out by demanding my own copy of the written report.

So now I am scared.

I am hoping that it is not a recurrent phyllodes tumor that chose to pop up on my spine because that is pretty scary. I know the chances of survival regarding a recurrent and spreading phyllodes, which this would be a metastisis since it is on my spine not the same breast. I know the chances of it being another low level malginant/benign Phyllodes. None of it is real encouraging or very good. But the only way to find out is to have it removed and biopsied since you can't tell a phyllodes from a non-cancerous tumor without a biopsy. (They very frequently come up with a false negative for cancer result on needle biopsies.) You would think that a doctor would tell their patient, specially one with my history, that an abnormal growth (aka tumor) has appeared on their spine.

I see my primary care doctor to get the ball rolling for a biopsy next Wednesday.

Please please please God, not cancer ok? Or at least, not malignant Phyllodes ok? please? pretty please with sugar on top?

I need prayers and well wishes that this turns out to be nothing, if you wouldn't mind.

Thank you.

Yesterday's Doctor's Visit

Yesterday was my pain management doctor's appointment and since Ron (my husband) was home he went with me. When the doctor finally came into the room it started out as usual, him not really looking at me but focusing on signing the prescriptions the nurse had filled out. Though he was a bit surprised when he entered the room to see my actually laying on my side on the examining table.I usually do not do that, instead I tough it out sitting in the chairs and do my best to hide my pain level. I choose to hide showing it physically because  I am afraid of being accused of lying or acting it up to make it appear worse than it is. Both are things I have been accused of by doctors in my past and 2 different nurses in my current doctor's office. I was hurting a great deal, finally gave in and laid down to get the weight/pressure off my left hip. I couldn't stay laying down for long cuz the right side started to hurt even more, so I had to sit up for a bit and when that started to hurt too much (after a minute or two) I would walk around the room; rinse and repeat. This prompted some questions, which I answered honestly, but he didn't comment on my replies.

I asked about the results of the cat scan that was done in January and was told there was nothing he did not expect regarding my sacrum and SI joints. He then said there was nothing exciting about my lower back either. Since I didn't get to read the report I don't know if that means everything is pretty much the same since the last cat scan (which showed the herniation at L5-S1 and bone fragments within the broken left SI joint) or  if it means that what new stuff did show up is what the doctor had been expecting to see. I like it much better when the doctor actually goes over the written results with me so I can ask questions.

Then the mobility evaluation was brought up. The doctor started to say that he didn't want me to have a power chair and that's when Ron started speaking up. The doctor had been getting ready to leave the room when Ron spoke up, instead he sat back down, crossed his legs and actually *looked* at Ron. He told the doctor that I've been in bed for months, that my pain has been real high, that I fall frequently and that I can't walk from my bedroom to the kitchen without having to sit down in the kitchen doorway or possibly falling. I said that I had been telling the doctor all of this for months, all about the new symptoms and how I can't stand or walk for more than 3 to 5 minutes. I went through it again, describing exactly what happens when I stand for 5 minutes. At minute 2 or 3, I get the sharp stabbing pain at the top of both SI joints and my lower back starts to scream and the sciatica symptoms start. By minute 4 my legs are shaking, shooting pains are going through entire pelvis, down both legs, and up my back. If I continue to stand after that starts, at minute 5 my leg gives out (usually the left, but sometimes both) and I fall. I've tested this many times, timing it as well, and that is the progression. I told him that I have been telling him this for months, which I had. But since I haven't been able to read my medical record, I can't say for sure if he put it in there. I'm pretty sure Ron, the PA, did though because I heard him speak into his tape recorder after a visit with him. (This was a few months ago, before the office stopped using physician's assistants)

The doctor looked down at my chart and started flipping through the pages and he had a slightly sheepish look on his face. Ron then asked me to tell the doctor how many times I fall in a week, so I did (the answer is 2 to 3 on average). The doctor asked if the injection they did helped, and I told him no, which it didn't help and I wasn't expecting it to. They haven't helped ever since I did that fundraising stuff for Kyle's friend, and suffered that fall on Christmas Eve 2010, when I landed on the edge of the arm of that heavy solid wood chair that Ron's dad built. The corner hit the scar over my left SI joint and my right SI joint hit the edge of the desk as I went down.

The doctor checked my reflexes by tapping on my knees and my ankles. My left leg jumped just a little, which surprised me. But when he tapped my right knee, it became obvious that my left leg did not respond the way it should have. It moved just a little, whereas my right leg jerked very noticeably. The same reaction occurred with my ankles, though my left foot barely moved at all. My right foot strongly jerked in response. I could feel the difference too. He didn't say whether he noticed it or not, just but the little reflex thingy back on the counter (it wasn't a hammer, it was a circle on the end of a handle).

The doctor ordered that I undergo the mobility evaluation for the power chair. This is GOOD!

 He then decided it was time to get the prep work done for radio frequency in June or July (when my year is up). He says my record shows I had radio frequency this passed summer, but I don't remember having it. I remember getting injections, but not RF due to insurance issues. I had been told my insurance would only pay for 1 RF procedure per year, not the 4 that I need (2 in lower back, 2 in pelvis). The doctor explained that the insurance company will not pay for more than 1 RF procedure to the same area in one year, but they will pay for more than one procedure to different spots and as long as they don't repeat any of the spinal levels, I can get all 4 sections done. He then said he wanted to go ahead and set up the diagnostics and filled out the order sheet for those. So I am all set for the diagnostic part of radio frequency in April. This way we can just order the RF in June without having to do the diagnostics and making me wait any longer than I already have. This is GOOD!

I mentioned to the doctor that I had purchased some books that are designed to help people suffering with chronic pain to learn techniques to help them cope with it. Some of these things I already do, such as meditating, deep breathing, visualization, and pacing myself but I figured it can't hurt to read them and see if there was anything new I could try. I told him that the book had a paper that lets the patient keep a pain journal and I would start doing that. A pain journal is a daily record of my pain levels. I will fill it out 3 or 4 times a day, writing down pain level by number, what activities I did that increased the pain, and what treatment methods/coping mechanisms I used to help me deal with the pain. This will give him a record of how I experience my pain on a daily basis. He seemed very pleased by both of these things. These are GOOD!

Ron then mentioned this blog and the doctor wrote down the URL. I don't know if he'll actually read it or not. If he does, I hope he isn't expecting daily postings with multiple reports of pain numbers throughout the day etc., like a pain journal. This blog is more for me to get out my thoughts, feelings, and experiences as it pertains to my constant pain (I still think that is a better descriptor than chronic pain). Even though it doesn't give the same day by day accounting as a pain journal does, it can provide the doctor with a better idea of how my pain has been affecting me and how I've been stuck in bed for months and how I am coping with it. So this is GOOD also!


I was saddened by the fact that everything that was said yesterday has been said by me alone for the past 9 months, yet it wasn't taken seriously until Ron was there and said the same things.

I understand that doctors, specially pain management doctors, have to be very very careful now thanks to the DEA's war on doctors and chronic pain patients. I understand that they have to be watchful and careful so they don't give a prescription to someone who turns out to be an addict. I understand that they are working under the threat of not only going to jail and losing their license to practice medicine, but also under the additional threat of losing everything they own. I understand where the doctor is coming from, I really do. But I can't help but feeling upset that (it seems) I was not believed until my husband talked to the doctor.

I think it is very wrong that doctors now have to assume their patients are exhibiting drug seeking behavior when all they are doing is what they should be doing, describing their symptoms to their physician, especially if those symptoms have changed. I think it is wrong that a patient has to bring in a witness to be believed. I am sure that this must frustrate the doctors as well because it interferes with their ability to develop a respectful and trusting relationship with their patients. All these new regulations and rules interfere with the doctor's ability to help people, which is usually why a person becomes a doctor in the first place.

Don't get me wrong, I like my doctor a great deal. He is understanding and genuinely wants to help me control my pain. If I didn't like my doctor I wouldn't have remained a patient of his office for the past 9 years. It is just frustrating to see how pain management has changed over those 9 years, to what it has become, as a result of the war on doctors. I can only imagine how much this must upset my doctors as well as it upsets me.

The Cycle Of A Chronic Pain Patient

This is a great article on how chronic pain is treated through "pain management". In my state, as I've posted before, things have gotten even worse. Read this page carefully:

Painopoly written by Back Pain Guy at "Two Pain Patients" blog. This is copyrighted to them so to read it you have to click the link. It will open in a new window so you can then return here and see my comments about this article.

This is an attempt at making the gauntlet chronic pain patients must go through every month to get their medications a bit humorous, while also informing the reader of just how difficult it is for most to obtain their medications. This is the same gauntlet I have been running for the past 16 years, ever since my pain severely increased while I was pregnant with my son resulting in the broken SI joint I now live with. The gauntlet has gotten more difficult thanks to all the negative fear mongering hysteria based reporting about pain medication. I'm going to make some comments about this article.

The author gives 3 pieces of advice about not taking how we (CP patients) are treated personally. Try not to take the statements made my relatives, friends, and everyone else personally. Try not to take the fact that you are required to undergo mandatory urine drug testing personally. These are good bits of advice, but sometimes so very hard to follow. For me it is getting more difficult thanks to the laws passed in FL that have removed some trust from my relationship with my doctor (I will write more in another post, it is good but also very sad, annoying, etc.) Having family and friends make statements that they believe you are an addict, putting you in the position to once again having to explain the difference between psychological addiction and physical dependency is not fun at all. This continues to crop up whenever there is a media "Frenzy" about prescription pain killers. It is hurtful to hear loved ones say those words to you and it is hard not to take it personally.

The mandatory drug testing is also difficult to not take personally because of the unspoken (but heavily implied) accusation that you are doing something wrong. It does not matter how many years you have been with the same doctor, you still have to piss in a cup. It doesn't matter how many years you have never shown any signs of addiction, you still have to piss in the cup. It doesn't matter that every urine test you've had always shows you are doing nothing wrong, you still have to piss in a cup. Why? Because you just *MIGHT* do something wrong and the doctor has to cover his ass against the DEA. For me, my insurance company pays around $300 for each of these tests. So much for lowering health care costs. Because these tests are required, no matter what your personal history consists of, the necessary trust between Dr. and patient is eroded by this unspoken fear you will become an addict. Add in how easy it is to fail one of these tests (due to false positives as a result of certain foods, or other medicines, plus other reasons that are not related to the test results but still count as "failing" and thus dismissal from the practice) and it gives the patient an increase in anxiety levels and the subconscious thought that their Dr. thinks they're an addict or making stuff up. So yes, it is hard not to take this personally.

The small sub-paragraph that talks about the "Mini Game" touches upon how patients are treated by pharmacies, and how exact the prescriptions have to be in order to be filled. You can NOT fill 1 day early, it must be filled exactly (for me) 30 days from my last prescription. Which really sucks if your pharmacist can not tell the difference in days that occur when a month has 31 days in, rather than 30. As a result your refill date will be 1 number earlier than last month because that is 30 days. Some pharmacists will also talk very loudly, violating your HIPPA rights by making sure everyone in the pharmacy knows you are trying to fill a narcotic, this causes you to be given dirty looks or even verbally harassed by other customers as they assume  you are trying to fill an illegal script. This can also cause muggings if someone in the pharmacy is only there as a lookout for their partner (in the parking lot), trying to spot whoever picks up a controlled substance script. I am lucky to have found a pharmacy that doesn't treat me this way, but I have experienced this crap in the past.

Now comes the actual "game" of painopoly. Read carefully and you'll notice that the author gets dropped from treatment by a pain clinic because he had a 10 day script filled by his primary care doctor, while he was trying to find a new pain clinic to see him. When you are BETWEEN pain management doctors (meaning you are not actually a patient of one) it is NOT doctor shopping to get medication from your primary care doctor. hough in FL it is now not allowed at all, primary care docs can't write for pain meds anymore so if you're in between for whatever reason, your screwed. Doctor shopping is when you get scripts from more than one doctor, at the same time, covering the same time period. The fact that the author ends up losing the pain management doctor he finally got in to see, because he got a short term (10 day) temporary script to hold him over (and out of withdrawal, and was out of meds by the time he saw the new pain doctor) while waiting to see the new doctor, is very common.

There are so many things I want to say in response to this blog post by Two Pain Patients, so I think I'll write a series of essays in response to the many many valid points that are raised in this essay. Until then, I'll leave my comments where they currently stand. But please, click the link and read about painopoly, it is a very accurate representation of what chronic pain patients are forced to endure. This is how it has been ever since I went to my first pain management doctor, in Arizona when I lived there, back in 1999. Over the 13 years from '99 to 2012, it has only gotten harder to receive medications, not easier.

The government and law enforcement agencies are targeting the wrong people in their attempts to cut down on prescription drugs on the street. The majority can not be coming from a doctor's prescription since it is so difficult to get a prescription in the first place, and gets even harder every year.

Re-enactment of First Appointmet with Pain Management

I made a little video of what often occurs when a chronic pain patient goes to their first appointment with pain management. This video is based on both my personal experience, and my recent research/reading into chronic pain.

Chronic pain patients are required to sign contracts with their pain management physician. Many of the stipulations in these contracts remove the patient's rights to privacy of their medical information as well as removing the constitutional rights that require law enforcement to obtain a warrant (meaning need to show probable cause to get such a warrant) in order to get the medical record. These contracts also often contain false information regarding what is drug seeking behavior, physical dependence, and tolerance to pain medication. Also they rely upon presumptive testing that is widely known to be inaccurate in order to deny treatment. Basically these contracts are set up in such a way that every chronic pain patient will eventually violate some part of the contract and lose treatment. Depression is NOT drug seeking behavior, it is a common occurrence with ANY chronic illness, not just chronic pain.

To learn more, including information about the so-called studies that the DEA rely upon to call prescription drug abuse an "epidemic" when the numbers don't support it. To learn more about chronic pain, contracts, and more:
http://www.dailykos.com/story/2011/04/06/963719/-Chronic-Pain-Patients-Lose-Their-Rights
http://pain-topics.org/ for updates on studies http://updates.pain-topics.org/

To learn more about Richard Paey, an example of the unfair investigation procedures and prosecution on chronic pain patients see here:
http://www.november.org/thewall/cases/paey-r/paey-r.html

Why many chronic pain patients will not go to an ER/ED

I have had some nasty experiences in the emergency rooms/departments throughout my life. It has gotten worse since my physical condition deteriorated to the point where I needed pain medication daily to attempt to control my pain. I’ve written about this before and I have seen other medical patients who write about their experiences in the ER/ED on their blogs. Sadly many of them are far from positive experiences and tend to be the reasons why most chronic pain patients will NOT go to an emergency room unless we think we are dying (meaning: symptoms of a heart attack, severely injured etc.) And most of us would certainly not go during a pain crisis even if our blood pressure is sky high, or we pass out from our pain. Why? Because of the attitude of many people who work in the ER/ED. I was hoping that my idea that some ER/ED nurses punish their patients (and it is not just them) if the patient pisses them off was just an erroneous thought. Sadly I was wrong.

I’ve been reading blogs written by medical employees (in this case I won’t say professionals because I do not see how this behavior is professional at all) over the last week or so. It started out by someone linking to a funny blog post and I read some funny replies in the comments and followed the links. I eventually ended up on a couple different blogs. Many of their posts were funny, some were utterly heart breaking, others were heartwarming and I chose to read a couple from their first posts. But some of these entries were infuriating to me, and made me feel not just sad, but scared as hell for my possible future treatment as I get older and the Obama-care goes into effect.

For example, in one blog post is the following statement: “I head to the cabinet that holds the STAT 16 Fr Punitive Foley Catheter, and Nurse Tinkerbell heads for the cabinet that holds the STAT 16g Punitive IV Catheter. It's called a "16 Squared" and it’s the first line treatment for ODs and fake seizures.”  For those who do not know a Foley Catheter is placed in the urethra to get a urine sample or for other purposes such as surgeries and guage refers to the width of the needle or instrument, the smaller the number the larger the needle/tubing/etc.  In the comment section the blogger is asked “Why do OD’s get a punitive 16g IV?” To which the blogger responds “ODs get the punitive 16g because if they're a real OD, they might need it, and if they're just looking for attention, it makes me feel better. I hate ODs. Use a gun, already.” Basically, one of the reasons a 16g needle is used is to punish them so the nurse who is angry at them for their actions “feels better” about having to deal with them. Another RN commented the following “Although an Ewald is perferred, where's the 16 fr. NG? 16 CUBED, my dear!” (An NG tube is a nasogastric tube, means through the nose, down the esophagus into the stomach) Another commenter Megan (who does not have a profile I can link) “They should teach it at our yearly mandatories- "Fake ER patients, and how best to make them wish they never came in"…”

Now I understand that this was not the focus of this post, the disgusting condition of the patient’s genitals and what was in her panties was the focus of the post. However, this disturbed me as I’ve been on the receiving end of one those those “16 squared’s” before. I had received a spinal tap and developed a spinal headache as a result. These headaches are HORRIBLE. After hours of vomiting, dizziness, blurred vision, and extreme pain I went to the ER on my doctor’s orders. This was back in 1992 or 1993, when I was not on daily pain medication. From the moment I was placed on a gurney in a room,  I was yelled at and ridiculed by the nurse who called me a “big baby”, “Whiner”, and “bitch” and proceeded to give me a 16g IV and catheter then yell at me for crying (and I didn’t bawl or scream, just bit my lips, held my breath and had tears rolling down my cheeks) while she stuck me over and over again in both hands attempting to get this IV. The resulting bruises lasted over 2 weeks and looked like gloves on both hands. She did not use any skin numbing medication before jamming me with the needle over and over. I never understood why this nurse treated me that way as I did not sass her, argue with her or anything else. I was not non-compliant, combative, or argumentative. Now I know and it makes me sick. Apparently since my complaint was “severe headache”, I was seen as a “Migraineur” (one who pretends to have a headache to score pain killers) despite the fact that the headache was caused by a known side effect of a medical procedure; a spinal headache from the spinal tap given during a myelogram earlier that same day.

I tried to dismiss this as a one-time only thing and continued reading the blog because some of the posts were quite funny. But this same topic of punishing a patient kept cropping up. This entire post, entitled “Punitive Procedures” turned my stomach. The commenting replies were just as bad or even worse such as this one from ERMurse: “18 Foley – Dry Insert”. Or this one by Ambulance Driver “Do both. In the same place. 18 Fr in the urethra, 14 gauge in the corpus cavernosum. It's an easily accessed vascular space, it's non-positional and you only need one Betadine

One post was about a patient who died in the ER/ED waiting room because she was basically dismissed as a drug addict. The comments on that one ranged from some outrage to other medical employees saying it was no big deal, its her own fault, etc. The link given to the news story no longer works but I read it along with the link that showed the woman’s autopsy report. The autopsy report showed the woman had only two drugs in her system, her drug of choice crystal meth and Vicodin (hydrocodone) which was at therapeutic levels (page 13 “ Forensic Laboratories” of autopsy pdf file). This means that she was not taking the Vicodin to get “high” or enhance her addiction as was assumed by the commenters. It means she was taking it as prescribed because she was actually in pain. She died in the ER/ED waiting room when her bowels ruptured due to obstruction which had been made worse by the Vicodin (which causes constipation that can result in obstruction etc.).  She was dismissed as a drug abuser by the ER/ED staff and died as a result. The nonchalant uncaring response of the supposed “medical employees” made my stomach turn. I knew that ER/ED departments don’t like people who take pain medication regularly or drug addicts, but the idea that they would shrug off a death so obviously caused by incompetence and malpractice just makes me sick.

I read the blogs of some of the commenters as well, especially the ones who identified themselves as nurses or other health care workers. Again, many of the posts were wonderful, many were very sad, yet many made me angry to read. Many posts showed how hard these people work, how much stress they are under, and how they struggle with low staffing and other issues. However, I found a few common threads in these blogs:

1.  Derogative terms used to describe patients that are meant to dismiss their complaints as not real, made up etc. such as “migraneurs, fibromyalgeurs, and chronic paineurs”
2.  Within the first 5 to 15 words a patient speaks to a triage nurse in an ER/ED that they make up their minds whether or not you are a “real” patient or just a “drug-seeker”
3.  The use of large bore IV’s, catheters, and nasogastric tubing as punitive against patients who piss them off is NOT isolated to a few people, but common among these ER/ED personnel who blog and comment on blogs and they think it is appropriate and funny
4. A very negative view of anyone who comes to the ER/ED complaining of pain of any sort, especially if that pain cannot easily be verified by a test
5. A very negative view of poor people and/or people without medical insurance
6.  A very negative view, as well as substandard care, of people on Medicaid or medicare who are often viewed as nothing more than lazy jerks sucking at the tit of hardworking martyrs such as medical employees
7.  A complete dismissal of certain medical diagnoses as “fake” and thus making people diagnosed with such diseases “fair game” for “punitive procedures” and ridicule

To be fair, I do understand how many drug addicts go to ER/ED’s seeking drugs. I do understand, and agree wholeheartedly, that this is aggravating, annoying, takes precious time and resources from truly sick people, and infuriating. I realize and understand how upsetting and infuriating it is to see so many people taking advantage of the systems set up to aide people (food stamps, Medicaid etc.), such as people who show up in name brand fashions dripping gold jewelry and chatting on expensive smart phones who are on Medicaid. However I do not agree that such feelings give any doctor, nurse, or other healthcare worker the right to punish the patient by deliberately hurting them through the use of large bore IV lines, or unlubricated Foley catheters etc.

One of the major parts of the oaths undertaken by medical personnel is “do no harm”. This is why many doctors and nurses are very careful in their treatment of patients. However, people like these not only break this oath but shatter it as their first action is punish the patient for angering them, thus harming the patient.

I’ve been treated with the “16 squared” (spinal headache), and the ignoring of my symptoms (chest pain with abnormal EKG) solely because I am a chronic pain patient. The last time I went to the ER/ED it took me 30 minutes of arguing with the doctor and the nurses to get through to them that I was NOT there for pain medication. As soon as they see that I am on pain medication daily, it doesn’t matter WHY I came to the ER/ED as that gets completely dismissed. Instead I am immediately labeled an addict, drug-seeker and treated accordingly. This most often means I am ignored for hours on end, as I was with the abnormal EKG and chest pain when I truly was having an issue with my heart. I was just lucky it wasn't a heart attack.

I realize these are older posts but they clearly illustrate an issue that chronically ill patients (especially those whose illness includes chronic pain) have been talking about for years; that medical workers treat them poorly and many do it on purpose.

I am terrified of going to the ER/ED because these are the kinds of nurses and doctors that I've run into most often and I know how these attitudes can easily lead to my dying or being permanently injured because they refuse to act on someone they consider "beneath them", a chronic pain patient.

I am not alone.

This is why.

Terrified and needing strength

As if a broken pelvis and chronic pain are not enough, I found a lump on my breast this weekend. I saw the doctor on Monday and she confirmed the lump. They are going to do an ultrasound and mammogram today. On an ultrasound a fluid filled thing (such as a cyst) will appear gray, a solid growth (like a tumor) will appear black as the sound waves can not go through them. I am praying for gray on the ultrasound.

Approval code paperwork has already been started for the surgeon in case I need a biopsy, this way I won't have to wait for approval codes.

I am terrified as breast cancer runs very strongly in my family and my chances are very very high (95%) to contract breast cancer in my lifetime.

I would appreciate any thoughts, prayers, well wishes or anything. Due to this I just haven't been stitching as I am too nervous to pay attention. Heck I haven't been doing much except praying for a cyst or something easy to take care of and not a cancerous tumor.

I'm sorry

Doctor Visit Day

Today was my doctor's visit for the month. As usual I ended up sitting in the waiting room for quite a while (hour and a half) in those very uncomfortable chairs. I brought a small cross stitch piece with me, but I can't say much about it as it is going to be part of a surprise for someone. I got the main part of it done while waiting. Then I got called back. No urine test this time, which was surprising as I haven't had one in the last few months. My doctor decided that he was going to give me 3 months worth of prescriptions so I wouldn't have to come back until the end of January 2010.

As I promised my daughter I did talk to the doctor about changing my anti-depressant because I know the Zoloft wasn't working anymore. Considering I have been on it for many years, I can't say I am all that surprised. So he switched me to that new medication Pristiq. I've never had an SNRI before and from what I've been able to read about it so far, there aren't any interactions with my other daily medications. That's good because I need those meds.

The visit went well and for once there was no piking and prodding just to see if my back and pelvis still hurt. Usually I get poked and prodded every month and asked "Does this still hurt?" while the doctor presses deeply into every painful spot in my lower back and pelvis; occasionally I end up falling because it hits the sciatic nerve and my leg just gives out. After I get home for the appointments I am usually in a great deal of pain and have to go lay down for a while to make is stop. Today I arrived at the doctor's office at a 4 on the pain scale, and left at a 7 so not so bad as usual.

For anyone that doesn't know what I mean by giving numbers for my pain I will explain. Some doctors (mine included) rate pain on a scale of 1 to 10. 1 being very little to no pain and 10 being extreme agony/worst pain of my life. So the lower the number, the less pain I am in and vice versa. Right now my pain level is a 5, which is not too bad.

I did not manage to meet all 3 goals for yesterday, but I did get 2 of them so that's better than nothing. I did manage to shower today, go out (to doctors and ran a small errand) then I needed to lay down.

I can't write right now as my niece is up and wanting my attention. I think she is upset that I went out and didn't take her with me earlier because she's being a tad clingy now. That's ok though, I love the cuddles. They feel so good and I know she'll grow up quickly and not want to cuddle so much.

Later all