Cash Cow Patients

No matter how old your kids get, you will always worry about them. Once they pass the age of 18 you do not have as much say, in the legal sense, as you did their whole life. Medical decisions are left up to them and no matter what you say they will have the final decision. Doctors and hospitals will no longer share information with you unless they have written permission from your child, I mean, young adult. It's hard to not go to doctor appointments and hear first-hand what their observations and treatment recommendations are, especially for ailments that are mysteries. You have to depend on your child, I mean, young adult, to relay that info and oftentimes they do not have the answers to the questions you pose. You want to call that doctor up and ask point-blank ??? or tell them did they mention !!!, but you can't. You have to become a spectator in your child's, I mean young adults, treatment.

My daughter has not been up to par since November of last year. She's had numerous blood tests and has seen numerous specialists. She pays for her own insurance, pays her own doctor bills, and it's come to the point where it seems she is working just to pay medical bills. She's on so many prescriptions I've lost count. She's been on medications that interact with each other, sometimes possibly deadly. I often feel the left hand is slapping the right hand, and even though they fall under the same medical facility umbrella, each doctor's office might as well be on different coasts, treating a different patient. Web MD is my friend and even if I didn't stay in a Holiday Inn Express last night I'd like to think I am not a medical moron. I also have my daughter's best interests at heart. I've made myself clear as to what course of action I would take, but she's trusting her doctors more than me. What can I do? I can be there for her when she needs me, like she did yesterday.

The latest round of tests involved a colonoscopy, endoscopy, and biopsies. I'm 54 and never have had the pleasure of any of those tests. Well, I did have biopsies, but not of my intestines. She's 20. When I was 20, other than a dermatologist, I don't think I even went to the doctor. I never would have met a $1,000 deductible by March. Each day the mail brings another insurance letter, another doctor bill, another laboratory bill, etc. My daughter has become a cash cow patient.

She asked me to go with her yesterday, and of course,  I wanted to go. I planned to speak with the billing office who wanted her to pay some money up front, and I also had questions for the gastroenterologist that my daughter couldn't answer. We arrived early for her 9:30am appointment. She was starving and in discomfort from the dreaded 64 ounce mixture. We waited, and waited, and waited some more, until we were the last people in the waiting room. Billing never brought up the up-front money issue. She didn't get into pre-op until 12:30. We waited, and waited, and waited some more while the nurses tried to insert a needle into the top of her hands for the IV drip. Couldn't do it. I winced everytime I saw the girl shudder as the needle was maneuvered in vain to find a vein. They finally determined it was impossible and inserted one in the crook of her arm instead.  I prayed the Hail Mary asking her to help the nurse who wasn't sure it was going to work. Finally, it did. And then we waited, and waited, and waited some more, until the anaesthesiologist came by. As I've done for every one of her past surgeries, I speak to them and tell them they are the most important person my daughter will be seeing. This one brightened up and said, "It's true, but many people don't realize that." I told her I most certainly did, and that I was entrusting her to take care of my daughter. She promised she would. And then we waited, and waited, and waited some more, another hour more, for the doctor to stop by. They almost brought her into surgery a half hour before then, but then realized the doctor hadn't spoken to her yet, so the gurney did an about-face.

Luckily I was there, because when they thought she was going in the first time, they erased her name off the board. When the doctor did come around I saw her look at the board and pick up a file. I knew it wasn't my daughter's file as I had seen the nurse put hers first in line. I went up to the doctor and introduced myself and asked her if we could speak. I pointed to my daughter and said she was her next patient and I had a couple of questions. First she asked my daughter if it was okay for her to discuss her chart with me. Naturally, she said yes. As I asked the questions I noticed her looking confused, as she moved papers around in the folder. And although she was asking my daughter to sign some papers, they weren't her papers. I didn't want to say that's not her chart until I had to, but I was prepared to. The nurse we were speaking with earlier realized it was the wrong folder and switched them out. So, had I not been there to bring her into my daughter's room, the poor girl would probably have gotten pushed back again. It was now 4 hours that she had been waiting, and she looked like she was fading fast.

Anyway, I asked why she was taking biopsies. She explained that she needed to perform them to rule out some illnesses. I told her I looked at my daughter's test results from two weeks prior testing for some of those illnesses, and they were all negative. She said sometimes it's a "false-positive" and the only way they could eliminate them would be through a biopsy. I hope that's true and it's not just a Ka-Ching! They wheeled her off, and by the time I went to the cafeteria to eat a granola bar, followed by a stroll up the block once, she was in recovery.

The doctor said everything looked good, but we wouldn't know definitely until the biopsies came back which could be a couple of weeks. She also said she had tonsillitis and recommended removing them. Ka-Ching! Seriously?! My daughter said her throat doesn't hurt at all. We figure maybe they're irritated from all that gross mixture she had to drink. Tonsils are the last thing on the medical maladies list.

So now we wait. And I pray nothing "bad" comes back, or if it does, it's something minor so they could finally treat her, or perhaps even, gasp, heal her. There's not a lot of money in healing though, is there?  But...if nothing "bad" comes back, where does that leave her? Right back where she started from. Only much, much poorer. And then, maybe then, she'll finally listen to what I've been saying is her problem all along...those damn pills they're feeding her, and will continue to feed her. If she stops them, then she wouldn't have to visit the doctors so often, and I'm sure they wouldn't want that. After all, cash cow patients are probably hard to come by these days. Or, maybe I'm wrong. I'm not a doctor. I'm just a mother.

RA Follow-Up

Yesterday I had my follow-up appointment with my new rheumatologist. She asked how I felt after being off the Methrotrexate for seven weeks. I told her no different than when I was on it. She rated my pain which was a good day yesterday, only a 2. This is weird because everyone around me has been complaining how they are aching due to the impending snow storm. I usually ache too but nothing this time. My right hand was a little swollen but that's probably because I am a righty and use it too much on that stupid iPhone. She squeezed and prodded all the places where RA is known to be and I didn't feel any pain. We spoke again about my last test results and it is her opinion that I do not have rheumatoid arthritis. When I asked her again why my last doctor wanted me to go on Enbrel then, she stated I should probably ask him, but then added that when a doctor makes a diagnosis it could be hard for them to back off of it. Hmmmm.

I asked her if she wanted all my records transferred from the old Rheumy and she said no. That tells me she doesn't value his opinion and will rely on her own tests and observations. The only test she wanted to take was a liver panel to see how it was doing. She recommended I keep using the arthritis gloves, capascian rub, and paraffin wax treatments. She didn't think adding Milk Thistle to my vitamin regiment was a good idea as it's not been "proven" to really help with all the claims it makes, and is not under FDA approval so one does not know what else they put in the capsules. I've Googled it myself and feel it can't hurt so am going to continue with it.

She also did not think I have fibromyalgia and said she hates putting that label on someone. It would be different if I was in constant pain, etc. but I'm not. I do have a wee bit of osteoarthritis but not bad enough to be put on any medication. She did not prescribe any medications for me. She also thinks if I lose some weight I will feel much better, and said it was important that I sweat when I work out. I did when I first started, but I really don't any more which means my body has hit a plateau and that's why I lost only 3 pounds in 7 weeks. I have to amp my routines up and she suggested I get a tai chi dvd and add that to my daily ritual.

She doesn't want to see me until June unless I develop some pain, etc. She's pregnant and is going to give birth in two months which alarmed me, but assures me she will return some time in May. Three hours after the lab took blood I received a notification from MyChart that my results were in. There were mixed results...some numbers were better and some were worse, but all within the high normal range. She noted she wasn't too concerned and will wait until the next visit to see how they were doing. I think I may have gone off the wagon a wee bit too much starting from Christmas and going forth. I was so happy to be off the MTX thinking I could drink again, that I may have taken it too far. Now that I've gotten it out of my system and see my liver is still not where it should be I will go back to my weekend only drinking.

I was supposed to see Dr. DoNothing on January 10th. When I called his office to cancel they asked if I wanted to reschedule. I told them not at that time. I never called back and surprise, surprise, they never called me to see what's going on. I've decided to take the high road and not bother confronting him with his misdiagnosis. What good is it going to do me? It will only aggravate and stress me out, creating only darkness. Rather, I am opening the light inside me and thanking whoever whispered in Jesus' ear to help me, because I do believe divine intervention must have had a hand in it.

My RA Story- Part 6 - Is It a Miracle?

So, when I went for my follow-up with the new rheumatologist she said, "Okay, I looked at all your tests and I don't know how you are going to take this, but I don't think you have rheumatoid arthritis. Nothing points to it." My reply, "Oh my God, that's what I thought too after looking at all the tests. Could it just be in remission?" "No, if you had it and it was in remission you would still have the markers, which I'm really not seeing." "So, are you saying that I've been on chemotherapy for 3 1/2 years for nothing? And why would my other doctor feel Enbrel was so necessary?" "I can't say. You have some symptoms that could be RA, but based on these numbers I have my doubts." "So what do I have?" And that my friends is the question that still needs to be answered.

First things first is to rule out RA, and getting off Methotrexate is the first step. She decreased my dosage to 4 pills a week for two weeks and then zero after that. She said it would take 8 weeks for the MTX to be totally out of my system. She wanted me to return then to see how my body was handling it, and if I noticed any difference. Well it's been 4 weeks since I popped those pills and I feel absolutely no worse, and yes, maybe even a little better because I'm not so fatigued from them. Or maybe I feel better because she prescribed Meloxican, a nonsteroidal anti-inflammatory drug, to take as needed. Over the last month, I have taken it 8 times.

She recommended I get arthritis gloves which I found in the form of crafter's gloves which are tight gloves that have the finger tips cut off. I wear them when my hands are aching. She also suggested I get a paraffin wax bath which my husband got me for Christmas. I've used it twice and both times I have scalded my hands. It's literally dipping your hands in hot melted wax a couple of times and then putting plastic over your hands and placing them in mitts for about 15 minutes. The fun part is peeling all the wax off your hands. It reminds me of when I used to put Elmer's Glue on my palms, wait for it to dry, and then peel it off. Only this is more painful. The first time is the worst. Each additional dip isn't as bad as the wax is hardening and getting thicker with each layer to protect your skin. Of course, underneath that first layer your skin might have third degree burns.  There is no regulator on the bath, so it's just freaking hot wax which is almost boiling. I probably should Google the process as I'm probably doing something wrong.

But along with one tablet of Flexeril at night that's it. That's all I've been doing. Altough I'm not pain free, it seems to be more bearable. So now here I am wondering what the hell has happened? You have no idea how much that Methotrexate has fucked me up. And if my spidey sense hadn't alerted me to seek out someone else I could very well be shooting myself up with something even worse. And all these crazy thoughts go through my mind. Have I been taking it all these years for no reason? Did I ever have Rheumatoid Arthritis to begin with? Was I miraculously healed when I went to Padre Pio's Shrine and asked him to heal me, or when I sent in the prayer cards and put that down as one of the intentions besides praying for my loved ones, or maybe when I said this prayer while rubbing his holy oil into my hands and feet...

Padre Pio - I just noticed his gloves are similar to the ones I'm wearing

Most blessed and beloved St. Pio, you were chosen to glorify the crucified Jesus Christ through the visible wounds of the Cross that you bore for 50 years. And like our Lord Jesus, you demonstrate your great love by sharing the many gifts bestowed upon you -- especially the gift of intercession.

Because of your great friendship with the Lord, He responds to your requests and blesses those who you bless.

I now add my prayer to the many offered to you every day by those who seek your help to obtain healings and consolations, earthly and spiritual blessings, and peace for body, mind and soul.

In your caring kindness, bless my loved ones and me, and intercede for this special request...(Here's where you mention your petition.)

In your great love, St Pio, please continue to pray with us and for us. Amen.

I do believe in miracles but was it one, or, was it a misdiagnosis? I don't know. Hopefully I'll know more in a month from now.

By the way, I highly recommend printing out the above prayer in case you know someone who needs it. It can't hurt, and who knows, maybe it might surprise you.

My Rheumatoid Arthritis Story - Part 5

Before I had my follow-up appointment I was notified that test results had been posted to My Chart. My Chart is a service of Carilion where you create an account which allows you to view your medical record. That includes future appointments, tests that are due, test results, and an email option where you can get in touch directly with your doctor. It's a very useful and practical service that certainly beats me having to badger a nurse to please send the results to me as soon as possible.

I started to read the results and began to wonder if perhaps I was reading them wrong. Some of the findings just didn't make sense to me. I am going to share some of them with you now:

Xrays of foot - "3 views of each foot. Preservation of joint spaces and bone density with no evidence of periarticular demineralization or marginal erosion. No definite periarticular soft tissue swelling. No acute fracture or osseous malalignment. No abnormal soft tissue calicifications. Mild right 1st metacarpophalangeal osteoarthrosis."
Impression: No features of an erosive arthropathy in either foot.
Comments from the doctor's office: Your xrays look fine.

Xrays of hand - "3 views of each hand. Preservation of joint spaces and bone density with no evidence of periarticular demineralization or marginal erosion. No definite periarticular soft tissue swelling. No acute fracture or osseous malalignment. No abnormal soft tissue calicifications. Corticated ossicle adjoining the left ulnar styloid process and a subtle corticated irregularity along the ulnar aspect of the distal left diaphysis suggesting old trauma."
Impression: No features of an erosive arthropathy in either foot.
Comments from the doctor's office: Your xrays look fine.

The "old trauma" would probably stem from when I was a pre-teen. I remember slipping and falling on the ice and hurting my left wrist/arm. I swore I had broken it, but nobody believed me. I never went to the doctor for it, and had an Ace Bandage as my therapy. To this day most times I can tell when it's going to rain because it hurts.

Notice how both xrays do not mention rheumatoid arthitis at all, and my foot mentions minor osteo arthritis.

Hepatatic Function Panel - All levels were within normal range except for the ALT which was only slightly elevated. I do not have hepatitis B or C.
Note the comparison of numbers between the two labs as well as the Standard Range each one uses:

Carilion - AST - Mine - 31. Standard Range - 10-42 ALT - Mine 66. Standard Range 10-60
Dr. DoNothing's Clinic - AST -  Mine - 44. Standard Range 15-37 ALT - Mine -106. Standard Range 30-65

There is quite a difference not only between the two labs, but between their Standard Range.

According to the 2010 ACR Classification Criteria for scoring/diagnosing Rheumatoid Arthritis, the following four tests are used:

Sedimentation Rate - Mine - 12. Standard Range 0-30.

The sedimentation rate (sed rate) blood test measures how quickly red blood cells (erythrocytes) settle in a test tube in one hour. The more red cells that fall to the bottom of the test tube in one hour, the higher the sed rate.

When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer.

The normal rate for a woman is 0-20. I have 12.

CCP AB IGG - Mine - less than 2. Reference range: 0.0 to 5.0 Interpretive Table: Low Positive: 5.1 - 14.9. High Positive - more than 15.

Citrulline antibody is an immune protein (antibody) that binds to a non-standard amino acid (citrulline) that is formed by removing amino groups from the natural amino acid, arginine. Citrulline antibodies are measured with a blood test that is analyzed in laboratories.

Research suggests that in the joints of patients with rheumatoid arthritis, proteins may be changed to citrulline as part of the process that leads to inflammation of the rheumatoid joint. Citrulline antibody has also been referred to as anti-citrulline antibody, anti-cyclic citrullinated peptide antibody, and anti-CCP. A plasma protein that rises in the blood with the inflammation from certain conditions.

My antibody was less than 2, way under the low positive of 5.1 - 14.9.

C-Reactive Protein - Mine - 0.44. Standard Range less than 1.0

C-reactive protein (CRP) is one of the plasma proteins known as acute-phase proteins: proteins whose plasma concentrations increase (or decrease) by 25% or more during inflammatory disorders.

CRP can rise as high as 1000-fold with inflammation. Conditions that commonly lead to marked changes in CRP include infection, trauma, surgery, burns, inflammatory conditions, and advanced cancer.

.44 is less than 1.

And for the main event:

Rheumatoid Factor - Mine is less than 10. Reference range: less than 14. Interpretive Table Low Positive: 15 - 41. High Positive: above 42.

Rheumatoid factor is an antibody that is detectable in the blood of 80% of adults with rheumatoid arthritis.

Rheumatoid can be detected in the blood of normal individuals and of those with other autoimmune diseases that are not rheumatoid arthritis.

In people with rheumatoid arthritis, high levels of rheumatoid factor can indicate a tendency toward more aggressive disease and/or a tendency to develop rheumatoid nodules and rheumatoid lung disease.

Normal is under 15. I have less than 10.

Now I don't have a medical degree, and I didn't stay in a Holiday Inn Express last night, but I know how to read. Unless I'm in Opposite World the results of my tests all point that I do NOT have Rheumatoid Arthritis.

What...the...fuck?

My Rheumatoid Arthritis Story - Part 4

I think my breaking point came during my last visit at the end of October when I went to  Dr. DoNothing and had the usual blood drawn only to find out that he neglected to put two of the standard tests requests in. When I received my results and noticed they were missing, I called his nurse who said, "Yeah, I wondered why he didn't put those ones in." Oh, really, you noticed? Then why didn't you ask him? I asked if they could just use the blood I had already given. Of course they couldn't, I would have to go back and pay an additional fee to have my blood drawn. I was pissed and let the nurse know. She said he was putting the order in as we spoke and I could come anytime. Fine. I went later on that afternoon. Guess what? There was no order put in. WTF? I asked to speak to the doctor or nurse and was told both had left for the day. Fuck this shit. The lab woman overheard me, stuck her head out of the door, and said she would draw the blood and put it in, since she remembered me there the week before. I thanked her, but I knew the other two were screwing with me. I also knew I was never going back.

I had an appointment with my family physician the first week of December who listened to my tale of woe and said someone from his office would get back to me that day with a referral for the Carilion specialist. I hoped my doctor had pull and would get me in to see the doctor I was told wasn't taking any more patients. As promised, later that afternoon I did get a call from Carilion to set up an appointment, but it wasn't with the doctor I had hoped. He still wasn't taking any new patients and was going to be out for a couple of months anyway. I was recommended to a new addition to their staff, an Indian doctor who was a female.

None of my doctors are female so this would be a new experience. The first thing I did was Google her name and saw she came from New York City (yay!) and had her residency at Stony Brook University in Long Island, and worked at Columbia University Medical Center. The best doctors I had when I was living in New York were either Indian or Egyptian, so I was already getting a good vibe. She specialized not only in rheumatoid arthritis, but also fibromyalgia and internal medicine. She also presented a study she had performed at last year's 2013 ACR/ARHP Annual Meeting in San Diego entitled, "Oral Calcium Not Linked to Higher Coronary Atherosclerosis Risk in RA." I'm already impressed with her.

I got an appointment pretty quickly for the following week and I liked her right on the spot. She was very easy to talk to. She asked lots of questions, and not a one about getting her car fixed. Although I brought her copies of my blood work from the last visit with Dr. DoNothing, as well as my baseline readings from over 3 years ago, she thought the best course of action was to order the tests she wanted which not only included the usual blood work, but tests for Rheumatoid Factor and since my liver was doing so poorly, hepatitis, which I have never received, as well as xrays of my hands and feet.

She didn't want to prescribe any new medicine or alter what I was presently taking until she saw the test results. She did however, assure me there were definitely other options besides Enbrel and Methotrexate. That's exactly what I was hoping to hear. Was there light at the end of the tunnel, or is that a train coming at me? I didn't know, but I made a follow up appointment for two weeks later.

My Rheumatoid Arthritis Story - Part 3

I started asking around for rheumatologist recommendations and everyone kept mentioning a certain doctor at Carilion. I called them and asked for an appointment. I was told said doctor was not taking any new patients and I needed a recommendation before any doctor from Carilion would see me. I became discouraged. My pain was increasing so I called Dr. DoNothing's office and asked if there wasn't anything I could do for it. The nurse said no, my only option was Enbrel. "If a family member of mine was in your situation I would make sure they got on Enbrel."

Why were they pushing Enbrel so much? Even Enbrel's own literature stated that it was only to be used for moderate to severe cases. I really didn't feel like I had a severe case. My husband's aunt has RA and she has a very severe case. She's had many surgeries and you can see the nodules on her. She takes gold. When I was first diagnosed I called her to ask what I could expect. She asked me what "number" I had. I told her 14. 14?! She said that was barely RA...her numbers were up in the 400's! She smoke, she drank, and told me she never let it get in her way. Sure, she had really bad days, and sometimes she didn't want to be around people, but she said that is was okay to feel that way too. I asked her about Enbrel and she said even in her condition she wouldn't risk it.

I started doing more research on Enbrel and everything I read I didn't like. Now that's not to say that it isn't a Godsend for some people, but there was just something about my doctor's insistence that Enbrel was my only option that didn't sit right. I began to wonder if perhaps doctors got some sort of kickback or something so I did a Google search. Lo and behold I found all these articles that Amgen, the maker of Enbrel just recently had to pay $762 million in an illegal drug marketing scam.

From the article: "Amgen also found itself on the wrong side of at least 10 whistleblower lawsuits. “For instance, two former Amgen sales representatives alleged that they were directed by management to promote Enbrel for mild psoriasis even though it had only been approved for more severe forms of the skin condition,” Ankin writes. “Some of the whistleblower lawsuits also included allegations Amgen paid kickbacks to doctors who prescribed the drugs for off-label uses.”

Other articles and blogs were just as disturbing. Amgen reps instructed to poach medical records? What? Even with all the fines, etc. the parent company continues to make money, as stated in this article from October 2012, banking on Enbrel -- "Analyst Steve Brozak of WBB Securities said he's concerned Amgen depends so much on Enbrel, which is in an "exceedingly competitive" market. The drug provides about 25 percent of Amgen's total revenue and one-third of its sales in the U.S., where he expects insurers to start pushing back against the high prices of biologic drugs.

Enbrel and rival medicines such as Remicade and Simponi work by tamping down the immune system to control disorders including rheumatoid arthritis and plaque psoriasis. But they leave people open to infections and possibly unforeseen consequences after long-term use, Brozak said."

Amgen's stock price when that article was written in October 2012 was $89 a share...today it's trading at $116.64. How much does Enbrel cost if you have to use a pen injector prefilled with 50mg, once a week? According to this Consumer Reports $2,690 per month! That's $32,280 per year! I'm not certain how much the insurance would cover. My plan covers 40% so let's go with that number. It would have cost me over almost $19,368. How much did my Methotrexate cost me per year? With insurance $180. If I didn't have insurance it would have been $443.88. If my numbers are close, there's no way I would have been able to afford it anyway.

Now, I'm not saying this particular doctor is getting any sort of kickback or anything, but if he's insisting this is my "only" option I am saying, I will find another doctor for another opinion. It was time to visit my family physician again...

*To be continued...*

My Rheumatoid Arthtritis Story - Part 2

My tri monthly visits to the rheumy lasted shorter than the time it took me to find a parking space in the lot. The longest time I spent in the clinic was waiting in the waiting room. My "Miss America" moniker disappeared, and any questions I asked him were always poo-pooed. "Don't you think my liver numbers are getting too high?" "They're a little elevated but nothing I would worry about. Think of it this way, even though the speed limit says 25mph you usually go over it, and that's okay." I hoped he didn't tell his newly-licensed daughter that!

I was getting concerned because at the very start of my diagnosis my liver levels were perfect. And keep in mind I've been a drinker my whole life as well as a Tylenol junkie. Those two elements were gone and another element had reared its head...high cholesterol. All of a sudden I had a problem with that, never thinking that maybe the MTX was contributing to it. My family physician put me on Fenofibrate which did bring the numbers way down, so I thought everything was okay. Meanwhile, the same family physician was giving my husband hell because of his liver levels which were half of what mine were! One doctor was reading him the riot act while another one was telling me not to worry about putting the pedal to the medal. I made a note to myself to bring my blood work to the next GP visit.

At the rheumy visits he would look at the blood results from three months ago. I couldn't grasp my head around that so after about a year and a half of looking at old numbers I began to ask him to let me take the blood work a week or so before my office visit so we could look at accurate numbers. He informed me that wasn't the way he did it. He had everything "scheduled" so that wouldn't work. I didn't want to argue so I let it go, for a little while. I did let him know I was still in pain so he told me to take Ibuprofren for it. I also told him that the MTX was wiping me out. I was so fatigued for two days after taking it that I was pretty much useless. He upped the Folic Acid to two pills every day and said that would counteract the tiredness. I told him I had added a bunch of vitamins to my regiment. He laughed and said if I wanted to waste my money that was my choice. Funny thing...my dental hygienist informed me that I should not take Ibuprofren with MTX as they interacted. I told the rheumy this and he said only if I use it "a lot." I told him I didn't want to use it at all and asked for something else. He prescribed Meloxican. When I got home I filled it, but before taking it, checked out Medscape's drug interaction site. Guess what? A serious interaction was found! So, no, I did not take it. Now I'm starting to really question my treatment, and have come to accept that there is nothing that I can take to relieve my pain.

On some visits he would squeeze my hands or knees and ask if it hurt. Ummm, yeah, when you squeeze them like that they certainly do hurt. But it was always a hit or miss thing. When he would ask me to gauge the level of discomfort on a scale of 1 to 10 I would say it doesn't work like that. "Today is a good day, I'm not in pain. If you would have seen me last weekend I was in pain. I notice it gets a lot worse with the weather changes." He said that wasn't the case. "The weather has no effect on you." "Umm, I think I know if it does or not, and believe me it does." He didn't believe me. He rarely, if ever and only when I asked him to, would listen to my lungs. I had read on-line that MTX could cause problems with the lungs so I thought that should be part of the routine exam. It wasn't.

And then fate stepped in. After a typical useless exam I had my blood drawn. When the results came in my rheumy who I had begun referring to as Dr. DoNothing happened to be on vacation so the head of the department looked at them. His nurse called and said my liver numbers were way too high and they wanted me to take a repeat test. When I looked at the numbers I laughed to myself as they had been way higher on other occasions. When the numbers came back high again Dr. DoNothing's nurse called and told me to drop the MTX to 5 pills per week instead of 6. I asked if he wanted to see me and she said no, not until the next office visit, 10 weeks away.

Meanwhile, my family doctor had taken me off the Fenofibrate because I showed him my liver numbers and relayed what Dr. DoNothing had said, "They could be be high because of the cholesterol medicine." After being off the cholesterol medicine for 6 months, my family doctor took more blood -- my liver levels were elevated and now my cholesterol was way up there again too. He told me to "watch my diet, avoid sugar, exercise, yada yada yada," but no more pills for now. I asked him what he thought about my treatments for RA, noting my poor numbers, my fatigue, and still painful existence, and he sort of deferred to the rheumy with a shrug of the shoulders as "he was the specialist, and they probably have a different threshold as to how high the levels should get." I told my family doctor I still was unable to sleep well so he prescribed the generic version of Flexeril. I began taking them and finally, finally, was able to sleep again. I also noticed I wasn't in as much pain throughout my muscles.

About two weeks prior to my next rheumy visit I decided I had enough of looking at old numbers and wanted to be able to talk to him face-to-face with current blood work numbers. I called the nurse and after leaving a couple of messages I finally spoke to her and told her I wanted them to put the order in. She said she would talk to the doctor. Well, long story short, and after a heated exchange with the nurse about how ridiculous this process was, he would not budge and refused to allow me to have my blood taken ahead of time. The day before I was to have my appointment I get a call from the office saying he was out of town for the next week and they needed to change my appointment. So much for his "schedule." Fine, I decided I would confront him then.

So I did. His stance was, once again, everything was according to schedule. I brought up how he cancelled my last appointment so the "schedule theory" is a farce. What difference would it make if I went one week prior, especially since many rheumatologists actually test their patients every 8 weeks, not 12 weeks like he does. "Well, there may be other tests I want you to take." "What other tests? It's the same routine every single time. If there are additional tests, I will pay the extra fee to take it." "Well if that's the case then you can come back here after the tests and we can go over them." "So, what you're saying is I should come in for my appointment, go give blood, and then when the results comes in pay another office visit to see you?" "Yes." "No, that's not how it should work. It should work how it works with my family doctor. I take the blood a week before seeing him and then during my visit we go over recent results." "I'm sorry you're not understanding me, that's not the way I do it." Now I'm boiling mad at this point and point out that the last results, read by the department head caused me to drop down on the MTX. How does he rectify that after all those other results where my liver numbers were even higher?

He ignores that statement and instead tells me I'm getting angry for no reason. I apologize and explain I'm Italian and from Brooklyn and if something is on my mind I'm going to let it out, do you understand me? So doctor let me ask you this, "What happened about putting the RA into remission?" He actually smirked and said, "Oh, that's never going to happen." I'm stunned, "You told me the first visit that by treating it aggressively we could put it into remission." "Oh, that's very rare." "So did you tell me that to just give me false hope?" "If you want to look at it that way." "Well, what other way is there? What would happen if I stopped taking the methotrexate?" "With not taking a biologic? You would become deformed, the disease would progress and you'd be in very bad pain. You really need to think about going on Enbrel." "Enbrel? Are you kidding me? You think I'm going to inject myself with a needle? I'd like you to run a test to see how bad the RA is and if it's improved." "Oh, it doesn't work like that." "What do you mean? Can't you get a number to see if the disease is progressing?" "No." "Well, how about taking more xrays. It's been over 3 years. Let's see if there's any more damage." "No, that's not necessary." "So what am I supposed to do?" "If I were you, I would begin taking Enbrel." "Those side effects are worse than the cure!" *Click here for a list of side effects which include Cancer.* "Don't pay attention to those side effects. They have to put that out there if even one person has it happen to them. Think about it and let me know what you want to do. See you in 12 weeks."

I know what I want to do. Never mind that. I know what I need to do...get another opinion. At this point I'm beginning to think Groucho would serve me better...Calling Dr. Marx, Calling Dr. Marx...

My Rheumatoid Arthritis Story - Part 1

I am now entering the third week of not taking Methotrexate, those horrible yellow chemotherapy pills that I had been ingesting for 3 1/2 years. When I was first diagnosed with Rheumatoid Arthritis back in September 2010 the rheumatologist prescribed a heavy dose of prednisone, along with 6 tablets of MTX per week. I despised the prednisone as it made me very moody and packed on 20 additional pounds within 2 months. I didn't know if it was the MTX or the prednisone that was helping reduce the inflammation, but was happy to get the hell off of them. A couple of weeks later the pain returned, but I did not want to go back on the prednisone. I was told the MTX would stop the pain. It didn't. Let me back up a little to when I was first diagnosed...

Weeks prior to going to my family doctor I was having difficulty sleeping, and my whole body ached. It was pain I couldn't quite put my finger on as it radiated throughout the bones and muscles with the strongest throbbing being in my hands and toes. My doctor thought some of the symptoms sounded like RA, but he wasn't sure so he referred me to a specialist. After taking x-rays and blood work the rheumatologist told me I had RA. I was devastated, and confused. The rheumy was very nice and told me not to worry, he could put it into remission by bombarding it with chemotherapy pills. I was aghast at the mere mention of such treatment, but he assured me that was the way to get it under control and into remission. Of course, it came with all sorts of warnings and possible side effects, the worst one in my view, being damage to my liver. I could no longer take Tylenol which was my go-to pain relief medicine, and worse, I could no longer drink alcohol, other than 1-2 glasses of wine per week, on the fourth day after taking the MTX pills. No!!!!!! I would have to be monitored every three months with bloodwork and visits to him.

At first I got along with the rheumy...he was very personable, maybe too personable, as he was always complimenting me, and telling me personal things about himself. I figured since he wasn't from this country maybe that's how the doctors in Ghana interacted with their patients and I was okay with it. Then things started to go sour. It came about once he found out I owned an auto repair shop. He would ask me questions about cars, like I know anything about that. I gave him a card and told him to speak with my husband as he was the mechanic. The rheumy was buying his daughter a car and had so many questions, none of which I could answer.

Anyway, it was one Saturday and he called the shop and my husband happened to be there working on his wood. The auto part of the shop is not opened on the weekends. When this "man" who didn't identify himself called asking for me, my husband got defensive, perhaps thinking it was one of the million telemarketers who call constantly for me, so replied to the tune of something along the lines, "She's not here, what do you want from her?" Knowing him, there might have been a curse word sprinkled in there. The caller then identified himself and said he wanted to bring a car down right then and there to have my husband check out. My husband let him know the shop was not opened but he could bring it in during the week. The caller did not like that as clearly my husband was there so why couldn't he just stop what he was doing and look at the car. I'm sure my husband's answer to him was probably not the most "polite." My husband did call me after the conversation and ask who the hell was this guy as he didn't like his attitude. I got mad at my husband for being so curt with him. My husband responded he was sorry I felt that way but the guy was an asshole. Cut to my next office visit...

The first thing the rheumy asked me was not how I was feeling, but instead stated how nasty my husband was, "What did he think I wanted to date you?" I was taken aback and explained to him about all the telemarketing calls we receive and that was more likely the reason he was abrupt at first. I also told him the shop is not open on weekends, but he could come during the week and that would be fine. He dismissed me with a "I already found someone else, and I bought the car." I responded with a "Okay, great, hope your daughter is happy. Good luck to her." And as far as I was concerned that was that. But, from that day on he wasn't the same to me...

*To Be Continued....*

Pain Pain Go Away...

"If you step on a crack, you break your mother's back!" -- unknown

That was a childhood ditty that one heard when growing up on the streets of Brooklyn. Ain't it sweet? The cracks referred to are cracks in the concrete sidewalks. One had to be very deft, or have extremely small feet, to not step on a crack. The way my back feels I'd swear my kids are stepping on cracks, but we don't have any sidewalks. So, I guess I'll have to chalk it up to something else. I just don't know what.

At first I thought I developed back pain because I tried using rubber bands instead of weights to do arm lifts. Because of the Rheumatoid Arthritis in my hands, I cannot hold weights any more so thought the bands would be a good substitute. Afterwards I felt the burn in my muscles and was happy. But then a couple of days later the back pain started. I don't remember pulling my back out, which to me would be a sudden powerful pain. Rather, my pain started with a mild nudge every day for the past two weeks culminating into a knock-out punch when I tried to move upon waking up yesterday morning. I literally could not get out of bed, and had to call upon the help of my husband to remove the puppy from my head and gently place me in an upright position. Let me tell you, that is some scary shit -- not being able to fend off a puppy!

My RA pain has always been bad in the mornings, but usually involves my feet. This is a new and most unwelcome development. It took me a while to get the strength to stand and wobble to the table. I tried stretching as much as I could which wasn't much, and asked my husband to run a hot shower. That seemed to help a lot. I took a couple of Ibuprofrens as well. Screw my liver. I needed the pain to be bearable. It became tolerable, but every time I tried to get in and out of my car I was reminded that it still existed. I laugh at myself now thinking that I was *this close* to buying a 2001 Jaguar the day before. There's no way I would be able to be comfortable in a vehicle that's lower to the ground than the one I'm driving in now. But damn, she was sweet looking.

Anyway, I don't even know if this back pain is from RA or if it's something worse. Yes, there are worse diseases than RA. And since I feel like my rheumy doesn't seem to be too concerned with me after our previous "disagreement," I thought now is the time to seek a second opinion. I asked around, Googled, etc. and found there were two specialists that most folks recommend, mine, and a doctor from Carilion. As soon as I was able to make my way out of bed I called the other doctor's office to make an appointment. They wouldn't make an appointment for me without a referral from my rheumy. I don't want my doctor to know. I just want a second opinion. The nurse suggested I go to my family doctor then and get a written referral from him even though he's associated with LG, not Carilion. She then added a by the way -- I wouldn't be able to see the doctor I asked for because he wasn't taking any new patients, but I could see a Nurse Practitioner instead. Ummm, no. The whole point of seeing this particular doctor was because he came recommended, and by the way, why do I need a referral then to see a NP??? Huh, huh?!

So, I called my rheumy's office this morning and explained to the front desk what was going on. I told her I needed to know if this is related to RA and come on it, or perhaps its due to something else and need to call my family doctor instead. She said she would relay the message to my doctor's nurse and they would get back to me right away. I figure "right away" means at the end of the day. I really feel like I'm Elaine from Seinfeld when she couldn't get a doctor to see her because of the notes in her file of her being a "difficult" patient. I didn't think she was difficult at all!

 I really have to learn how to control my tongue. This valley is too small for my big attitude....

"Pain pain, go away, come back another day..." -- Me.