Cancer, Get Thee Behind Me...

So when I last left you I had blogged about my mom coming to me in a dream sparking my not canceling a gynecological appointment...this is the post: "Listen To Your Dead Relatives."

Since that post things have been a whirlwind to say the least. I saw the gynecological oncologist the first week of September. From there I underwent pre-testing for surgery to take place on October 13th. I was very nervous about the pre-testing as I had never had an ekg or chest x-ray taken before. I worried that they would see something that would halt the procedure from taking place. Since I did not receive any phone calls and did get the results sent to MyChart, I felt there was nothing serious going on. Even my blood work looked good, and my A1C was only 5.8! The only real problem was degenerative discs in my spine, which would not stop the operation. Upon googling I realize that maybe that's why my legs go numb and I have lower back pain. Certainly something to look into down the road, but for now, one medical malady at a time please.

Upon check-in I was brought back to pre-op where I waited and waited and waited. I was the second surgery scheduled and the first was not as quick as they thought it would be. That was okay with me. Take your time. Help the case before me. Rest. Have lunch. Relax. Then start on me. Of course I was starving because you cannot eat from the night before, so my stomach kept growling.

No food did not stop my system from working and after I went to the bathroom using the single ply cheap toilet paper I didn't feel "clean" enough for surgery. I remembered there was a wipey container on the sink outside the bathroom so I asked my husband to get it for me. The top was already opened but there were no wipes sticking through it so I asked him to unscrew it so I could retrieve some from the bottom of the container. He did. They were soaking wet so I squished a couple and then proceeded to use them. Holy mother of God! I about hit the ceiling. They started burning my butt. My daughter came to see what I was yelling about and I told her those freaking wipes are burning the shit out of me. She grabbed the container and said, please tell me you did not use these on your body. Uh, yeah, I did. She started yelling at me that they were not body wipes but industrial strength hospital surface wipes.

I start screaming to get me a rag and wet it down. My husband had a shop one in his pocket so I saturated it and tried wiping myself while hooked up to IV. It was quite the scene. My daughter is hysterical...my husband is frantic...I'm burning. The girl starts reading the container whose wipes kills pretty much everything. Worried that I really screwed up I'm yelling at my husband for not reading it. Poor thing looked distraught! The nurse comes in and I tell her what I did. She looks at me like I'm crazy, and says, "You Brooklyn folks really are tough!" I'm sure the operating room staff had quite the chuckle over my burning bottom.

It wasn't much longer until I was wheeled back in to the operating room. They were using the DaVinci surgical system and I really wished they hadn't told me how I would be practically upside down while they operated. I get dizzy if my head is not elevated with three pillows! We still did not know if I had cancer or not so the plan was to have a radical hysterectomy and check to see if cancer was present while I was still under. What would happen next would be up to the oncologist and team. As I was wheeled down the hall I prayed to Mary and Padre Pio for their assistance.

Next thing I knew I was being woken up with six hours lost. They said the operation was a success, and I did indeed have uterine cancer. They also had to remove my appendix which was not part of the original plan. The surgeon did not remove any of the lymph nodes as he felt the criteria was such that I was in more danger if he had at that time. He felt the cancer was contained within my uterus based on a number of factors including the pathology report during surgery which he said has a very high accuracy rate. They still send everything out to be checked further so there is still a chance I may have to undergo more surgery but as of right now, no. I will know more at my follow-up appointment next week.

They wanted to keep me overnight in the hospital and possibly for another day. The bed I was in moved constantly and I felt like I was on a canoe on a rolling river. It made me sick. I begged them to stop it but they said they couldn't and that it was to prevent bed sores. I told them I plan to only be here overnight so that's not a worry. Nope, there was no off button. WTF? I understood the leg things blowing up constantly to prevent blood clots but this rolling rock bed was just too much. I literally did not get one minute of sleep and I knew if I stayed there more than a day I would get sick because my immunity would be compromised from lack of sleep. I begged them to let me go home.

Once they took the catheter out I had six hours to urinate on my own or I would have to undergo some sort of bladder procedure. Within two hours I was out of that bed and into that bathroom. I begged them for food and this midnight ice cream treat was the best tasting ice cream I've ever had!

I asked the overnight nurses to walk me around but they said it was too soon. I told them there was no way I could sleep in that bed so at least let me sit in the chair, which I did. And let me just say one thing that did annoy me a wee bit...the support staff asking me constantly where I was from. I've been living in Roanoke 21 years, so I'm from here now, but yes, I was born in Brooklyn. Hearing that they were constantly talking about it is not amusing, even if one of them tried to convince the others I was from Floyd County. Yeah, that's hysterical.

By the time the first doctor came around at 7:00am the next morning I told her I was ready to go home. She said I had to walk first and I was like, damn, I'll run if I have to! So they walked me around the ward, and agreed to let me go home. It was too depressing to be in the cancer and palliative ward. My heart ached for those patients and family members holding vigils. After every room I passed I asked Padre Pio to provide comfort for them. I actually had to wait for my husband to bring me clothes or I would have been out of there even earlier than 11:00am.

Today is the fifth day after surgery. I still do not feel like myself. I feel dizzy, disoriented, and slightly nauseous. I finally slept four straight hours last night. The only pain medicine I've been on is two Tylenols every six hours. I am unable to drive in a car for two weeks because of the blood thinning meds. I am walking around the house as much as I can. The hardest thing has been keeping Bella away and from jumping on me. She is a smart dog so she remembers what "Boo-Boo" means. We used it when my daughter had her surgery and had to be away from her. And after the first night of me saying, "Mommy has boo-boo" she is leaving me alone and letting me sleep in the spare room without banging on the door all night and crying for Mommy.

No, I'm not myself yet, but I am alive! I am thankful to be alive! I am thankful for my family...for my mother coming to me in a dream...for my gynecologist who recommended my tests...for my oncologist and surgical team...for Padre Pio and Mother Mary, and I am thankful my intuition once again led me down the road I needed to go. Don't know if I'm totally out of the woods yet, but it could have been so much worse. These past couple of months really made me realize what's important in life, and that is, life itself.

Hey, cancer, get thee behind me...you're not getting me yet...I'm from Brooklyn...I'm a fighter, so fuck off.

Listen to Your Dead Relatives

When I was younger my mother and I did not have a good relationship. It got better once I had kids, but I still never felt as close to her as I did to my father. I pretty much never listened to anything she said as I felt she was there<...and I was...>here. If she ever said "I love you" to me I don't remember hearing it. The last time I remember saying it to her was when she was on her death bed in the delirium stage of cancer. I hoped she heard it and understood I meant it.

She's been gone 16 years, and only recently has she begun visiting me in my dreams. Over the last couple of months she's been hovering there, in the background, silently staring, and not a friendly stare. She always looks like she's angry, perhaps at me. She exudes a cold chill. She's always silent. I do all the talking, to her, and I usually, like I did in real life too many times, have a snippy attitude. "Say something, dammit!" She never does. And then a couple of weeks ago she finally did.

She looked younger and thinner than when she passed and had her dark hair of her youth. She stood apart from four female friends and relatives of mine. She looked at me with the same cold stare but this time she spoke as she pointed to the four ladies, herself, and then to me. "We are all on the same team," she said and spun her arm, with finger pointed.  My son came running from somewhere and rushed to hug her. "Grandma, it's been so long since I heard your voice," he said. She stood there looking back at me and not acknowledging him. In my dream I said to myself this is weird, she loves him, why is she acting this way? She must be trying to tell me something. Do not forget this dream. And then I awoke with a start.

My mom was happiest when she was with her grandchildren

In the morning I thought back to the four females who were in the dream and what the link between them, my mother, and myself could possibly be. And then it hit me. All of them had some form of cancer. All of them, except my mother, had beat cancer. So how does this relate to me? Well, recently I'd been having "female trouble." When I called my gynecologist the first appointment I could get was three weeks as he had just left town. By time the appointment was rolling around I felt better and my symptoms had stopped. Even though "Google" said I shouldn't, I was going to just cancel it. In fact, the morning after the dream was when I was going to, but then I thought maybe I better not. So I kept the appointment and saw the doctor two days later.

He didn't seem too concerned as I had had similar event happen four years ago and had a biopsy which came back normal. A couple of months ago I had my regular yearly exam and even though he said I didn't need to have a Pap test I insisted on one which came back normal. This time instead of going for a biopsy, which hurt like hell last time, he ordered an ultrasound which took place two weeks later. I was glad because I thought that would be less painful. After having to drink 24 ounces of water an hour before I was scheduled it was almost worse than having a biopsy. I thought my bladder would burst, and every time she pressed on my stomach I thought I was going to have an accident.

I watched the screen and remarked how it looked like doppler radar. The technician said that's exactly what it was. They've come a long way since I had one when pregnant! I asked her what she saw and she would not tell me a thing, no matter how much I pressed her to. The following Monday I got a call from my doctor. When he calls on the phone, it's never good news as I usually get the results sent to Mychart. The ultrasound came back abnormal. I needed to get a biopsy. Oh joy.

So Monday on the anniversary of my father's death, I underwent a uterine biopsy. Ouch. I kept the pain to myself. My doctor said I was "stoic" and the results would take about a week. I already "knew" what they would be, so when he called yesterday with the news I was not surprised. At the very minimum I have to have a complete hysterectomy. What comes next depends on the lymph node sampling. I'm waiting for a call from the Oncologist to set up the consult meeting. My gynecologist forwarded everything over to her. Apparently you just can't call the head of the department up and say, "I want you. C'mon let's do it, now!" So the referral is in, and I await the call.

Guess my trip to New York is on hold right now. Guess all trips are on hold right now. Thanks mom for the heads up...sorry it took you to be dead for me to finally listen to you. So I guess the morale is, listen to your body and your intuition, and if dead relatives come to you in dreams, listen to them too.

Ice, Ice Baby

This is what we woke up to in Roanoke, VA this morning.

Looks so beautiful, so tranquil...yet, in reality...so dangerous, so treacherous.

We were lucky, only the dimming of lights struck, but no major power outage. The cracking of limbs and tree trunks echoed all around us, and I wondered if one of the oak branches would plummet through our sunroom roof.

The majestic hemlock sunk to the ground as if the entire world rested on its shoulders.

I know the feeling. I prayed both hemlock and I would stay strong and bounce right back up without giving in to a break. It's now late afternoon and the tree has lifted. Now it's my time.

Two Weeks After Surgery:

We were able to get the driveway and vehicle clear of ice and transport the weak-from-all-night- nausea patient to the clinic.  I propped her up in a wheel chair in the lobby while I parked the car, and for a moment I felt like we were in the sequel to Weekend at Bernie's. Ginger ale propped in hand, head listing to one side, all she had to do was be coherent enough to get the staples removed from her hip. Nothing was going to stop us from that happening, not even this damn bug that hit first my husband two days ago, and then her about 3:00am. I guess the constant mantra of "she can't get sick, she can't get sick, she can't get sick" did nothing. And I blame myself for this crappy turn of event. You see, had I not taken the couple of efforts towards "giving me a break" by my husband in the caretake of our daughter this weekend, he might not have passed it on to her. I'm sure he didn't realize he was coming down with something, but frankly, he probably wouldn't even admit to not feeling well and besides, he is no Pontius Pilate.

Me, on the other hand, have wrinkles on my fingers. I'm either washing, wiping, spraying, or gelling my hands before I touch anything that the girl will use. I'm a little more stringent right now, but there's not a bag I own that doesn't have at least hand sanitizer and cleansing wipes. I think watching those videos in the hospital really made more aware of how important it is to make sure there are no germs are patients with weakened immune systems and/or surgical wounds.

In any event, the girl is really under the weather, and maybe that was a good thing, yes, a blessing in disguise, if you will. By feeling so miserable, so weak, so "pathetic" (her word, not mine) she was able to endure the removal of "at least" thirty staples from her hip better than had she been perky and aware. Now, that's not to say there wasn't the flinching, ouching, squeezing of hand, while trying to hold back tears of pain, but considering they didn't even numb the area, I think she did damn good, damn good. And now they're out, the wound secured by surge-strips. I haven't looked at it. I just couldn't today. Just hearing the clip of the metal as he built a road map was enough for one day. The surgeon said everything looks good and that's all I need to hear. I did take a gander at the X-ray, before and after shots. Wow. Three long screws (although they looked like nails to me) are holding her leg to the hip. It reminded me of something religious, the way they were thrust in like three daggers in the sacred heart. She's going to definitely set off security alarms.

Now we have to focus on the mend. Once she takes a shower I'm sure that will help psychologically. I bought a slide tub bench which she will need as she has at least six more weeks of being unable to apply any pressure to that leg. You never miss things until you don't use them. Go legs! But right now she has to get some sleep and keep some food down.  And I have to continue to stay well, although she seems to think my catching it is inevitable. We'll see...if I go down, it's not going to be pretty...not as pretty as this shot...

One Week After Surgery

Only she could rock a hospital gown!

It's been a week since my daughter had her surgery to remove what we thought were only two to three osteochondromas from her right hip. She had been in extreme pain for a couple of months, likening it to having a huge rock in your shoe that you couldn't remove. This was the worst pain she had ever felt since it didn't matter what position her body was in...there was no relief. All of her prior surgeries on her leg and finger -- twenty two tumors total removed over three surgeries -- were done at UVA in Charlotesville by a wonderful pediatric surgeon. Unfortunately, since she is now 22 he would not take her case so we were forced to "pick" someone in Roanoke.

When I first met the surgeon from Carillion I thought he was maybe "too young" and worried if he'd be up to the task. My daughter didn't mind his age and felt that maybe that would be a good thing since he probably knew newer techniques. She even stated that folks say she is "too young" to be a news director and she excels at her job. I understood. The surgeon was in no hurry to operate and tried physical therapy first which seemed to exasperate the pain. She underwent the normal routine of tests, x-rays, catscan & contrast MRI.

The MRI showed a potential problem with one of the tumors that we didn't even know was there. Since it "lit up" the MRI it was possible it was cancerous. The surgeon hoped it was just fluid giving us the hot-spot but wouldn't know until he got in there. The plan was to open her up, which entailed an incision from her backside down to the right thigh. Once he looked at it if he thought there was a possibility it was cancer he would take a biopsy and close her right back up. If he thought it wasn't he would continue with the scheduled operation to remove the other tumors. He felt there was also a possibility that she would lose the artery in her leg and perhaps have some nerve damage as the tumors have a way of getting wrapped in them. He would do his best to preserve whatever he could. I found out he was not only an orthopedist specialist, although not really in hips, but in feet, but he also was a trauma surgeon. That is a good thing...that means he works fast and is used to expecting the unexpected.

The check-in at Roanoke Memorial hospital was quite smooth and she was taken back for prep at the exact time she was supposed to. This was a huge difference from prior surgeries at UVA where one time she had to wait seven hours, starving, before she was even taken back. My advice to those getting surgery is to push to have the first of the day. I gave the staff my cell-phone and they used it to call me back into pre-op. When I went back I thought she was all ready and I was just going to say good luck. When I got there she was in tears as there was a problem with her getting an IV. The nurses tried both hands and her arm but it kept failing. They finally got it to stay in the arm but that was after "digging around" a bit. She's just like me...we hate needles. It was a pretty traumatic experience and they gave her something to calm down before wheeling her in. I kissed her and then began praying to Mary and Padre Pio for her.

Ouch!

About forty five minutes later I received a phone call from one of the OR nurses who said they were going ahead with the whole operation. I breathed a sigh of relief as that meant it didn't look like cancer. It was about three hours later before she was in recovery. I was surprised at how aware and awake she already was. My fear is always that she won't come out of anesthesia, or that they give her too much and she suffers brain damage. I always make it a point to speak to the anesthesiologist and tell them they are the most important person on the team. They truly are.

The surgeon came in to brief us on the operation. There were twenty tumors removed. One was as large as a golf ball, another two also big and the other 17 smaller. There were more but he couldn't take out any other as the amount already weakened the bones. So he took the ones he thought would be potential problems down the line. The operation itself entails dislocating the hip (cracking it) and removing the leg from the socket. He then scapelled and scraped the offenders. He replaced the leg into the socket and used screws to hold it in place. He was able to work around the artery so she didn't lose it. He stressed that the hip and leg are extremely weak now and although he thought recovery originally might be around 8 weeks he upped it to 12. There could be no pressure whatsoever on that right leg. It was a total hip impingement operation meaning no weight at all, no crossing ankles, no movement. She could not move more than 90 degrees from the waist meaning no bending, etc. She would need home care physical therapy. I would be her right leg.

She was brought into a room quickly which also impressed me. The nursing staff was great, except for one or two night ones. Nobody was familiar with her condition and I guess they thought it odd such a young lady had "hip problems." The first night was spent in bed and they put her on a regular diet. I was really impressed by a young man she had begun dating two weeks before surgery. Unfortunately, most of the dopes she's dated before him have made her feel like a freak regarding her condition. They tore her apart and her self-esteem was null. This boy seems to be the opposite. He builds her up. He even stayed the entire night with her in the hospital, sleeping in a chair! He's been a God send and I really hope he's the real deal.

Love heals

The very next morning physical therapy had her up and trying to walk. She cannot use a wheelchair so she has a walker. She has to lift her body up, use her left foot to move forward while slowly positioning the right one. It's very taxing on someone who has no upper body strength, but by the time she recovers she will. She walked all the way down to the nurses station.

She still kept her sense of humor while struggling with pain.

I knew she was feeling better when she started complaining about the disgusting hospital food. She stayed another night as did her boyfriend. She got the okay to leave on Wednesday morning after meeting with the doctors and therapist who gave her devices, such as a grasping hook (look I'm Buster from Arrested Development!) a sock device (not gonna happen...I'll put her socks on) a long shoe-horn (shoes? Ha!) and a sponge on a stick (counting down the days to a real shower), to make her daily living easier.

Just getting her into the car was an experience. Of course there was a torrential downpour and I had to navigate through flooded roads and try to miss bumps and holes in the road. Boy was I thankful the hospital was only fifteen minutes from home instead of three hours!

There are so many things one takes for granted until one finds themselves in a position where they're no longer able to do them by themselves. My lower back is killing me from being bent over a good part of the day to help that leg/foot along. She cannot dress herself, go to the bathroom herself, get out of bed herself, sit in a recliner herself. This is so frustrating for someone who is used to not depending upon anyone and is a firecracker constantly spinning in her previous life. My stupid pain is nothing compared to the pain she is experiencing and I feel guilty even mentioning mine!

One of the biggest challenges was keeping Bella away from her. The "normal" routine is Bella wakes the girl up every day and then snuggles in bed with her. Fearing she will crack the hip when she jumps, she has been barred from going near the girl. I hold Bella in my arms and bring her to my daughter so she could give her kisses. I've had to position the walker and crutches (which she doesn't use but they make a good guard) where my daughter is to keep Bella away from her. I keep telling her, no, no baby, she has a boo-boo, and I think the dog finally gets it. My daughter cannot wait to pick that baby up and snuggle.

The first day home the girl did get a message that one of the news casts she directed has been nominated for an Emmy. She directed that show a couple of months ago while sitting on a pile of pillows in the studio as she was in extreme agony. We both cried tears of joy at the news...21 years old and her show was nominated! How cool is that? Well, it was a mixed blessing because she already misses going to work. In fact, I just had to stop writing this post because I heard something tumble down in her room and found her in tears. She hates being bed-ridden. She's frustrated and upset. She hates calling on me constantly. She feels as if she's a burden. Of course she's not. We had a long talk and I said the tears are good to get out, just let them flow. I also told her this is only temporary. Every day she will feel better. I don't mind helping her. That's what moms do. Nothing else matters, except for her. Heck, I even got over my fear of needles as I have to inject her daily to prevent blood clots.

Almost one week later. The incision goes up her backside. The leg is swollen and the black and blue nasty. There is also yellow bruising that you cannot see in the pic.

When she cries she feels useless I remind her to be thankful all the tumors came back from the pathology lab as being benign. I remind her how much she has already accomplished in her life. I remind her there is a reason she has endured this suffering her whole life and when she feels up to it she should begin to write about it. I remind her there are others out there who feel hopeless and she can be the beacon of hope to them all...an inspiration not to give up. She will overcome this and she will find her calling. Of this I'm sure. For now she needs patience..and some visitors wouldn't be a bad thing either.

Found the perfect chaise recliner that doesn't rock and she found the perfect guy  who does rock.

Face of a Chronic Illness

I'd like to share this Facebook post from my daughter...for anyone who has, or cares for someone with a chronic illness, you may relate.

This is what someone looks like living life with a chronic illness. Chronic illnesses are conditions or diseases that can be neither prevented, nor generally ever cured. Many chronic illnesses are invisible disabilities, meaning they are conditions that create significant challenges in daily every day life, but are not easily apparent and sometimes not even seen to anyone on the outside.

My parents told me when I was two years old I fell off the bed. They felt a bump on my leg afterwards, and brought me to the doctor. It was then when I was diagnosed with Multiple Heredity Exostoses. MHE is a rare, chronic, painful disease that is characterized by benign bone tumors. It’s generally hereditary, as the name states, however in my case, it is an even rarer mutation as I’m the first generation to have it. I can’t remember a time I HAVEN’T BEEN in pain. You can’t tell by this picture, as this was taken after I had 22 tumors removed from my body, 21 from my legs and 1 from my hand, but it’s a deforming condition as well. Growing up, I used to have golf balls sticking out of my knees. I was an extremely fragile child: if I were hit hard enough (as in falling or running into the metal rods on the play ground) I’d get another tumor on the impact site. If I tried to run in gym or on the playground, muscles, tendons, and nerves would get stuck on the tumors in my knees. My legs would lock until the tissue was unstuck. I would have to basically pull the muscle off of it myself. I was so fragile that the other kids were scared of me. I remember when I told my “best friend” in fourth grade that the reason I couldn’t take PE was because I had tumors, she screamed “Ew get your cancer away from me!”, in front of the whole class. I was basically ostracized during my entire school years.

I could never understand why people are so hard on people with chronic illnesses, but then I thought maybe it’s because they simply just don’t know someone is suffering in silence. The best compliment someone can give me has nothing to do with my appearance, but that they didn’t know I had anything wrong with me. People who go through life living with a chronic illness have a double life. They have the life they want people to see, the life that’s going through the motions of daily normal life—going to work, having a social life, a façade really. The real life is the one they don’t want people to know—the struggle to get out of bed, the amount of sheer determination it takes to go through a full day of work. The constant inner pep talks, inner monologues about different motivations to keep going. The guilt of cancelling plans last minute because your body can’t handle anymore, and then the shame of just stopping making plans overall because you know you’ll have to cancel anyway, your body just can’t handle anything more. The constant worry that you’re keeping your chin up high and your voice strong and clear when you just get back bad test results. Those living with chronic conditions have become so accustomed to living the double life that it appears to the world as one, leading to the ignorance aforementioned: they just can’t tell. 

For me personally, the fact that I can go to work is a blessing and nothing I would take for granted. I have over 100 tumors through out my body; I do not have to work a day in my life. I could collect a check and never have to get off the couch to earn it. I don’t have to work, but I want to. That’s why for me, the most hurtful thing someone can do is imply that I’m lazy. The things “normal” people see as a chore, I—along with many others going through life with a chronic illness—see as a privilege. I’m on deck for my fourth surgery and the most upsetting part about that isn’t the amount of work that needs to be done, reconstructive, and tumor removal. It’s the post op recovery that upsets me most, because I will be forced to stay home and miss work.

I only write this to offer perspective. I don’t write this for your sympathy and pity. My ultimate goal in life is to be “important enough” that people will care. Don’t get me wrong, I know people care, but I’d like to be the person a little girl with bumps all over her body can look to and know she can do what ever she puts her mind to, no matter what the bullies and doctors say. I’d like to be the person a worried mother can look to and know MHE, and ANY disabling illness, is not a death sentence, and will not stop their child from living a happy and fulfilled life. I’d like to be the inspiration that I never had, and that can only be achieved by me opening up and telling my story.

Marie

My Eyes Are Opened

If we're friends in "real life" or on Facebook you already know the good news...according to the MRI results, my daughter does NOT have bone cancer. The radiologist compared last year's MRI with last week's, and except for some bone issues near the ankle, there is nothing "unusual," and any tumors present in that leg have not become malignant.

Needless to say, we are beyond the moon that she will not have to undergo treatment for bone cancer. She will need some surgery near the ankle which will hopefully alleviate the pain radiating up the leg. After thinking you have cancer for three weeks, any surgery spoken of, which in the past would have caused depression, is now something to look forward to, especially if they are able to straighten her leg at the same time. We have an appointment in a couple of weeks with another orthopedic surgeon to talk further on what this would entail, and if she/we are comfortable with him.

The doctor we saw yesterday felt the person who read the first X-rays from Doctor's Express was not familiar with her condition, or her history, and should never have told her she had cancer, over the phone, by the way. I doubt she will ever use that doc-in-the-box again.

The last couple of weeks have been horrible. The more she Googled, the more she was convinced she was dying. I stopped Googling after determining which hospitals across the country would be the best place for bone cancer treatments. I still had hope that she was a victim of the "new doctors in July" scenario. Apparently on July 1st many doctors, radiologists, medical personnel, etc. who have just graduated or finished up their internships begin their careers, and July is the month where most mistakes are made in the medical field. Once her blood work came back with all results in the "normal" range, I was even more convinced that she probably just had a dope read the X-ray and she did not have cancer. Surely, the white blood cell levels would be higher if they were fighting something. To be sure, I called on Padre Pio for divine intervention. Hey, it works for me.

After her appointment yesterday, the first person she called was her dad, and these are tears of relief.

We went to a local restaurant so she could eat something before going into work. During all this trauma, she has missed only one day of work. She couldn't have a celebratory drink because two weeks ago she had her wallet STOLEN AGAIN! This time she didn't notice quick enough and they cleaned out her bank account. Unbelievable. It was the last thing she needed, but in a way it was a distraction as it took her mind off her health problems. She is working with a detective to catch them because criminals are stupid, and don't realize you're pretty much on camera wherever you go, so it's only a matter of time before all the i's are dotted and t's are crossed hopefully resulting in arrests.

When you have a scare like this it sort of makes you look differently at things, puts what's important in perspective, and makes one question certain things. People have said they are praying for her. What makes one person's prayers answered while another one's not? I've known other people who have had many, many, more people, church people, praying for them, and they themselves are "good Christians" yet it didn't matter. I've heard people say "good things happen to good people." I say bullshit. Bad things happen to "good people" too. If she ended up having bone cancer, would that mean she wasn't a "good person?" And how could she have been a "bad person" when she was first diagnosed at 1 1/2 years old with this horrible chronic condition? I've seen good things happen to "bad people" as well. And if someone uses that expression on themselves, I could probably point out at least a couple of things about them that does not make them 100% "good." I know they might mean well when they say it to me, but, no, I don't like that statement at all.

What I do like are these two statements, "Be thankful for the bad things in life, for they open your eyes to the good things you weren't paying attention to before," and "The things you take for granted someone else is praying for."

My eyes are opened... 

I'd like to share something my daughter posted on her Facebook wall last week, under this photo:

Everything about this hits home for me, right down to the old lady in the wheel chair. It's been a rough month for me with my leg, physically and mentally. Most people who are "healthy", or never had to deal with a severe or chronic medical condition, can not truly grasp how hard it is to retain the daily "status quo" routines while at the same time battling something that is completely out of their control. Going against what your body dictates you can or can not do is a whole other level of going against what your parents/significant other/friends/etc say you can or can not do. Instead of getting grounded for going to a party, you're bed ridden for what could wind up to be days because you wanted to go to work. Instead of missing out on activities because your parents took your phone, you miss out on activities because your body won't let you hike, or run, or do anything that involves more physical activity than just walking in a mall. Most people don't see the struggle, they don't see the pain, they don't see the amount of effort it takes to do the basic every day tasks, like working or walking down the street to get milk, or even going down or up a flight of stairs. All they see is how slow you all of a sudden became at doing their job, or their limp that sticks out like a sore thumb, or how they have to go up one stair at a time, pause, pep talk themselves, and go up the next stair. Or they see a wheel chair, crutches, leg braces. And God forbid you're young and need to use the motorized scooter to get your groceries. Then all they see is a lazy "child" who thinks its funny to ride around. Last week, I was walking, or rather limping, down the street when someone I knew, very close, started shouting at me about my limp, making fun of it, telling me to walk faster. As soon as I turned around and they realized it was ME, the person they've known for years, the person they share secrets with and fears and desires, the person they knew that had a bone deformity and most recently serious concerns with my leg, they stopped and apologized. "I didn't realize it was you". That is NOT an okay excuse. I accepted it as ignorance, but it is actually the worst excuse to ever say. If you know someone in your life who is affected by a medical condition, deformity, disease, disability, or anything of the sort, please please think about that person the next time you see someone who doesn't fit the mold of what you'd consider "normal". Making fun of some one who doesn't resemble yourself is a fleeting subconscious thought, however vocalizing it to that person comes from a place of complete ignorance. I'm not saying this for my benefit, 21 years of dealing and coping and you learn not to focus on the disability and more on all the things you accomplish despite it. When someone focuses on my limp, I focus on how I'm limping to go do what I love, how no limp will ever stop me from directing, doing what I'm passionate about in life, or seeing the people I love. I'm saying this to bring awareness, and also to offer support for those who suffer and persevere through similar situations. Younger generations think the #dontjudgechallenge is drawing all over your face with eyeliner in one frame and the next being dressed to the tens. No. THIS is the REAL #dontjudgechallenge, and if more people would make THIS challenge viral, the world would be one step closer to peace (pun intended).

Thank you all for your support, prayers, well wishes, concerns, and just being there. It means the world to both of us...

A Colonoscopy is Your Friend

Everyone says the worst part of getting a colonoscopy is the prep involved. And that may be true for most people, but for me it was convincing my doctor I needed to get a colonoscopy. You see, for the last 19 years I have lived in the Roanoke Valley and for some reason I have found that the women here are treated with less urgency, and taken less seriously by doctors than the men are. I also believe if a woman wants the best care she had better hit those books and hit the web to familiarize herself with her symptoms and become an expert on the best treatment she thinks would be best to help her and then convince her doctors to "give it a go." And if she doesn't like the doctor's response, she best find herself another doctor, and quick! Shit, if I hadn't I would still be on chemotherapy for rheumatoid arthritis, a disease I found out I never even had! But that's not today's post...today is all about the colon.

When my husband turned 50 his doctor, the same doctor I have, hounded him to get a colonoscopy. It took him two years to convince my husband to get one. When I turned 50 there was no mention of a colonoscopy. Same at 51, 52. At 53 I brought up the colonoscopy but the doctor didn't respond, so I thought oh well, that's good. At 54, I brought it up again, still no urgency noted, so I let another year pass. Then when I hit 55, "my people" which is what I call my intuition, my guides, my guardian angels, you get the point, began to whisper rather loudly it was time to get a colonoscopy. They said, "You don't want to move to Brooklyn and find out you have colon cancer up there, do you? You know everyone that checks into Maimonides Hospital never comes out...remember your mom?" So I listened to them, and when I went for my next doctor visit I mentioned again that I still hadn't had a colonoscopy and threw in a by the way, my grandmother had colon cancer tidbit. To ensure the urgency I also told him that I planned to spend a good portion of my time up in New York and wanted to be checked out before heading up there shortly. He said he would send a referral and I would hear from the center. After hearing nothing for 10 days, I called the center and they said they had just received my referral that morning, so they conducted the pre-interview on the phone and we set up an appointment. When I requested the doctor my husband had had I was informed that my doctor's office didn't specify anyone in particular so she scheduled me with someone else. Ummmm, no. You see, I did my homework and I knew which doctor I wanted so I told them I would wait until I could get an appointment with the doctor I wanted. Heck, I waited 5 years, I could wait a couple more weeks! So I did and I had my first colonoscopy yesterday and wanted to share a couple of observations. I won't show pictures, but I actually did get some!

First off the prep...yup, it is as horrid as everyone says it is. You have to drink 4 liters of it broken up into two sessions. The first day, it's two liters, 8 ounces every 15-20 minutes. Then the following day, or middle of the night, depending upon what time your procedure is, the rest of the 2 liters, 8 ounces every 15-20 minutes. I got three packets of flavoring to choose from, cherry, lemon & orange. Rather than mix the entire package in the jug I sampled each flavor by glass. They were all horrible so I ended up not using any of them. Since I'm really not a gulper, and am more of a sipper when it comes to any liquid, I was pretty much gagging trying to get each glass down. I tried using a straw but that didn't work. By the second liter I found something that worked for me. Before downing each glass I would swish a capful of RealLemon in my mouth and spit it out. Then I would try and drink the prep glass as quick as possible followed by another capful of RealLemon swished in my mouth. That really helped, but I will probably not be drinking lemonade any time soon. It is crucial that you drink the entire prep because if you do not cleanse your colon properly the test will not be accurate, or worse, they'll tell you you have to come back. You don't want that.

I couldn't get a morning appointment as everyone advised me to because I wanted that certain doctor. So that meant I was very, very hungry by the time 2:00pm came around. It also meant that the appointment would not happen at 2:00pm because the folks before me went past their 20:00 allotment time. If you get an early appointment you will not be as hungry and you will not have to worry about the back-log. On the negative side though, you will have to wake up at 1:00am and begin your second stage of prep. However, you will most likely be up already using the bathroom! I didn't sleep at all the previous night even though I didn't need to start my prep until 6:00am. So I would advise going for the early schedule.

When my daughter had her colonoscopy her doctor had it done at the hospital. She had to wait over three hours pass her scheduled time and the bill she received was astronomical. I did not want mine done at a hospital so I went to a local endoscopy center where all the talk was about Joan Rivers' death at an endoscopy center. I spoke with the anesthesiologist who I always consider the most important person in that room. My biggest fear of getting this test done was that I would not wake up. That's always my biggest fear. She assured me that wouldn't be the case and that the procedure should only take 20 minutes. My cousin had told me that by the time he counted to three he was under. Of course that was not the case with me. I could have counted to 100 and I still wasn't under. I think my body was fighting it the same way it fights when I try to get hypnotized...doesn't happen. The anesthesiologist kept asking if I was feeling tired yet. I kept talking. Finally she said, ok think of a happy place and gave that needle a deep plunge! I thought of my hammock on the beach, but when I awoke which felt like was a minute later, but according to the clock, was one hour later, I was dreaming of my son getting a new job. I said to no one in particular, "My son looked so happy, he just got a new job!" I hope that was a good omen.

I was a little groggy and gassy, which is normal, but I seemed to have all my faculties so I was able to breathe a sigh of relief. I had survived the anesthesia! After I got dressed the doctor met with me and my husband. You will need someone to drive you home. He had a couple of sheets of papers with photos. Ewww, gross! He said it was a very good thing I had decided to get a colonoscopy because he removed four polyps, two were pretty large, 8mm & 6mm and the others were 3 and 2. He said he would send them out to get biopsied and would have his office call if there were any "problems." He explained how important it is to remove any polyps because they can turn cancerous and the sooner you remove them the better. If there were no problems with the ones he took out I wouldn't have to come back for three years. My husband doesn't have to go back for ten years. Hey, I finally found a doctor that takes my health seriously! I just received a phone call from their office and gulped when I saw their name on the caller-id. It was a nurse just following up to make sure I felt okay. It's too soon for the biopsies, but at least the office was concerned. My daughter's doc never called to see how she did the day after.

As a side note...A very good friend of my husband's underwent treatment for what started as colon cancer over the last two years. He is 80 years old and never had a colonoscopy. The polyps he had were so large they blocked his colon and had turned cancerous. This in turn trickled down to a host of other ailments. Although he is alive, his quality of life will never be the same. A friend of mine posted on Facebook what one month of treating her cancer (not colon) cost her...over $135,000! Crazy. Colon cancer is one of the most treatable and preventable cancers there are. I urge you to not be afraid of the test. Yeah, the prep sucks, but once you're done you'll forget about it. Better to be pro-active than re-active. And if your doctor doesn't take you seriously, insist that he does. Patient, especially if you're a woman, heal thyself!

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.

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.

RA - One Year Later

It's been a year since I was first diagnosed with rheumatoid arthritis. I guess the worst part of it came last week when I saw my rheumatologist and asked him, "So when do I get off the Methotrexate?" and he answered, "Never." What...the...hell?

After I picked my jaw up off the floor I reminded him that during my initial visit a year ago he claimed we could put the RA into remission by dosing me heavy with the horrible MTX. Was that just a ploy so I wouldn't feel "devasted" by my diagnosis and sink into deep depression? He countered some people do go into remission, but it's very rare. In order to qualify that someone is in remission, my RA level and inflammation level would have to be "normal" and I would have to be pain free for over a year. I am nowhere near that.

I finally stopped taking prednisone three weeks ago and the consequences of that action have enabled me to sleep better, but also have raised my inflammation and pain levels. It's a damned if you do, damned if you don't. And damned, I don't want to be on it anymore, so I am dealing with the pain as best as I can.

To look at me you wouldn't know I have this disease unless you could read something in my eyes, or notice I cannot open a jar without help. You wouldn't see my struggle to get out of bed some mornings, but my husband does. I try not to complain but he knows when I'm having a flare up. He's been very good with it, although it gets really annoying when he still asks me, "What can I do to help you?" There is nothing you can do to help me. It really irks me when he follows up with, "I could never imagine that you would get something like this." You don't have to "imagine" it, it's happened. "There's got to be something you can take."

There are no magic pain pills. I can't even take Tylenol because the MTX is hard on the liver and so is acetaminophen. And so far I've been "lucky" that my liver has been able to handle the MTX. I go for blood work every other month to make sure. It seems my pattern of taking the chemo pills on Monday and then waiting until Thursday evening to drink is working. I've pushed the envelope a little and allow myself to imbibe throughout the weekend, clearing out my body for 24 hours before the Monday MTX dosage. But I can't drink as much as before, and not only because of the potential liver damage. My blood counts are so low that my body reacts as if every drink is equal to two drinks. I know exactly how many glasses of wine I could tolerate. So far, so good.

Another side effect of taking a chemo medication is loss of hair. Lately I've noticed I've been losing more strands than usual. It could be a seasonal thing so I'm not going to panic, yet. If it happens I will buy a wig in every color and have fun with it. In the beginning, I used to keep a pain chart based on the weather, humidity, and barometric pressure, trying to determine if I could see a pattern. Once I realized even if I did find a common link I still wouldn't be able to do anything about it, I figured I was just wasting my time. And if there's one thing RA has taught me is that time is precious and not meant to be wasted.

When I say I don't have a year to spare I mean it. I live on the edge of wondering if today is the day I wake up and I'm rendered severely disabled. Yet, in my glorious belief in miracles, I know I can be cured. I believe in healing. Don't know when, don't know how, but do know life is meant to live now. Waiting for that "special" occasion to wear that "special" dress will only gather dust. Everyday is special.

Nope, I don't have a year to spare. And that's another reason I've decided not to go the traditional publishing route for my book. Too long to print. Deadlines? Yeah, I want to set my own. And that trip out West I've always dreamed about? That's happening next year. I don't want to drive a Hover-round along the Grand Canyon's rim. I'm hiking it. I'm taking a month to drive tothe West and visit all the locations I've always felt drawn to. No more waiting for the, "We'll go out West after -- insert parental obligation here -- is finished."

So, on this RA anniversary -- physically, I feel much better than I did one year ago when I thought I had bone cancer. RA sucks, but it's nothing I can't handle. There's much worse diseases out there. Mentally? Better than I felt a year ago. It's liberating when you give into your heart.

Under Pressure

Some of you already know, but for the stray reader who happens upon this blog and doesn't, my teen aged daughter has been suffering from headaches for months. Actually, it's not "headaches" but one continuous headache that varies in intensity. I've said from the beginning that I thought it was because she was under pressure. She disagreed saying through clenched teeth, "I'm not stressed!" I reminded her of when it all began...soon after securing a role in her high school's production of Peter Pan.

It was her first speaking/singing/acting role and she loved every minute of it. Every minute included working til midnight in rehearsals most nights for about two months. Her days began at 5:45am. She attended two high schools. The first one is a Mass Communication center whose classes began at 7:15. After three classes she'd drive to the second school and closed off her day at around 3:30pm when she wasn't in the play. All her classes are Advanced Placement ones which means AP tests as well as SAT's. I noticed as her Spanish 4 grade began to plummet her headaches increased. Let it be known, I was not on her case about her grades. She was the one who insisted she needed a 4.0 and a high SAT score...both impossible to achieve with a constant mind-numbing headache.

To be on the safe side we made the round of doctors. First she saw an emergency doctor at her primary's office. She suggested her eyes needed to be checked. We did that. Nothing was wrong so we went back to her regular doctor. She suggested she get an MRI. Thankfully nothing major was wrong so we went back to her regular doctor. She suggested she see an ENT specialist. Nothing major was wrong so we went back to her regular doctor. She suggested we see a neurologist. The next available appointment was at the end of August. I hoped once school ended the pressure would be off and the headache would go away.

School ended, the pressure is off but the headache remained. So it was with great joy that I received a call from the neurologist's office yesterdy saying they had a cancellation today, asking if we wanted the appointment. Yes! After repeating her medical history for the umpteenth time, signing away my life, giving her what looked like a sobriety test as well as other balance tests he put his hands on the side of her face up by her jaw and pressed. "Does this hurt?" "Ouch!" And just like that he came up with the diagnosis...tension headaches.

Apparently she unconsciously is tensing her jaw and grinding her teeth while she sleeps. This action has caused the muscles to become sore radiating pain in her ears and through her head. She has to stay away from caffeine (she does love Mt. Dew) and gum, has to massage her jaw and slack it when she feels it tightening. He recommends a mouth guard for night and one pill a day for a month to relax her. He's so sure this is going to work that he doesn't even want a follow-up.

I feel positive this is going to work too. I know so many other teenagers that are going through the same thing as my daughter and it's from the pressure. It's tough being a teenager. The doctor said you wouldn't find this diagnosis or treatment many places (true, I've Googled her symptoms a million times) but it comes from his over 30 years experience. I told him I agreed with him that it was due to tension but would never have thought it was coming from her jaw muscles. He said, "Well, you haven't been practicing medicine as long as I have." I replied, "No, but I did stay in a Holiday Inn Express last night."

Fingers are crossed...