Tuesday, March 11, 2014

I can't make this crap up I swear!

I apologize for the length of time in between posts but when I fill you in, you will understand. Last we left off I was getting a second opinion in Boston for Diesel. (Click here for the first part of the story) My Rheumatologist had a doctor she recommended. We did the 2 hour drive on a Monday morning anxious for what he would tell us.

Let me back up a bit. Sunday night I was looking over all my medical records. What I found was disturbing. For months I had been complaining to the surgeon about lower right quadrant pain. That's actually what sent me to the hospital. I thought it was my appendix. Well after my surgery and the weeks following my doctor wasn't giving me solutions. He just threw dilaudid at me. It turns out Diesel was actually located under my breast bone. I had never felt pain there. This pain I was having was from 2 cysts on my right ovary. One was 4.8cm and the other was 1.8cm. It also turns out I had cysts in my kidney too. I was livid. I was so mad I could cry. Why would he not tell me these things? After I vent to my husband I'm ok. Tomorrow I will be getting the best care up in Boston so he can go screw himself right?

We go to Boston. We met the new doctor and he spent an hour with us. He listened to everything. The story, our concerns, our plan. He was awesome. He said "We'll figure this out." I go back to Boston that following Friday and do a bunch of tests he had ordered. Including an ovarian ultrasound for my lady parts doctor, which he encouraged me to go see ASAP.

A few weeks go by and the new doctor has had a chance to look over my old scans, bloodwork, and pathology. He compares them to the new scans, bloodwork, and pathology. He calls us with his findings. He speaks to Joe. (I was getting some beauty rest). 

Ok here we go...deep breath...There was no mass, tumor, or Diesel. He's about 95% sure. He's also positive that I had pancreatitis and it went away. That and the ovaries were causing the pain. He also said the pathology from the biopsy was just fatty tissue which everyone has. You can just imagine my heart and mind are racing. I'm floored. I'm beyond mad. You know the mad you get and you just have to laugh because if you act on your true feelings you would end up in jail? Yeah that mad. 

It took me a good week to process this information. All this time not on my RA meds and I was close to flaring and staying that way. A high risk major surgery was done that I didn't need. Every time I looked at the huge ugly scar running down my belly I wanted to cry. My sister has always told me I should be proud of my scars. I'm still finding the strength to do so. I know I will at some point. 

My next step was to get the other medical issues taken care of. I went to my nephrologist down at Yale and he assured me my kidneys were great and he'd keep an eye on them. Phew {wipes brow}...NEXT!

On to my lady parts doctor. Actually this was a new doctor to me and someone my sister recommended. So last Tues I go to my appointment. We talk in her office, she looks at my ultrasounds they did in Boston. She asks me for family history of cancer and I tell her to look at my sisters chart because I have no idea as far as the women are concerned. She then tells me I'm high risk for surgery because of my RA, narrow airways, and sleep apnea, so she probably wouldn't do it. She would just drain they cyst and it would probably come back. I was pretty disappointed because it was causing a lot of pain. I mean wake you out of a dead sleep some nights pain. 

Next we go into the ultrasound room and she does an ultrasound of my ovaries. She says "ok left one looks clear and healthy. So does the right one. Ohhhh how does April sound for your surgery?" Yeah let me translate. I do have a 4.8cm cyst...IN MY FALLOPIAN TUBE!!! And next to it is not a cyst but backed up fluid taking up the space of 1.8cm. Holy crap!! Considering the fallopian measures in circumferance .06cm-1.2cm. Yup. You read that right. So now I am in danger of the tube bursting. Luckily we have some time (just weeks) because cysts grow slower than an ectopic pregnancy. And why does the cyst hurt worse now that I've been validated?

Fast forward to last Friday. I'm down in Jersey and call to schedule my surgery. The doctor calls me back. I have found out that ovarian, uterine, and cervical cancer run in my family. I also am a carrier for the HPV virus. So more than likely she said I will get cancer. Because she is going in there anyway to take of the cysts she decided a full hysterectomy is needed. Wow. My uterus is pretty much the only body part that has cooperated all my life. I've been told I have a perfect uterus. No abnormal pap smears, no endometriosis, no cramping during periods, very short and on time cycle too. I hang up the phone and I just sit there.

I'm in my thirties. Granted, my high thirties but still. I'm in shock. It takes me a while to react. Then I cry. "I'm not done", I say. "I'm not done". I had held on to a small hope that oops I'll get pregnant again. Julia was an oops. I desperately all these years I wanted another oops. 

I have struggled the last few years with the decision to not have more kids. I have watched so many with diseases just keep having kids and they are spread thin. Barely making it through the day. I chose to be a quality mother and give all my energy to one child because at times I know I will only have 40%.  I'm not judging those that do. I'm just saying it's not a fit for my family. 

A hysterectomy is so final. You can reverse a vasectomy. You can harvest eggs once your tubes are tied. It's been a week,and I can't wrap my head around it. I've been in a daze just going through the motions. Everyone keeps telling me "oh it's the best thing I ever did!". But this is ME. My head agrees this is the best option rather than risking cancer and them having to go back in. My heart is what's broken. I feel like I'm mourning a child that isn't mine, that I was never going to have. Is that normal? 

May 8. That's when it's going to happen. I just wanna fast forward to when I will be ok with all of this. 

Well I think I've written enough for now. I'll be back sooner than later. Muah. 

Wednesday, January 29, 2014

NDC #s explained

Have you ever wondered what that long number on your medication was? Well it's called a National Drug Code or NDC number. You will see this number on every current medication that is manufactured, prepared, compounded, or processed for commercial distribution and human use in the United States. All medications must have this 10 digit, three segmented number and be listed in a directory for the FDA. This requirement comes to you courtesy of The Drug Listing Act of 1972. 

The NDC # can tell you a lot about the product. Below I will break it down for you using the NDC # on the photo in this post.

Segment 1 (52544) 
The laborer code. This number can be 4 or 5 digits and is assigned by the FDA. This number is basically the manufacturers social security number. It is unique to the manufacturer. So in this case 52544 is the registered number of Watson. This is important because many manufacturers can make the same drug. 

Segment 2 (163)
The product code. This number can be 3 or 4 digits and specifies drug formulation, dosage, and specific strength of the medication. This code tells me the medication is Maxidone or Hydrocodone Bitartrate 10mg and Acetaminophen 750mg.

Segment 3 (01)
The package code. This number can be 1 or 2 digits and identifies the package form and size. Here you have 100 units in pill form. 

All pharmacies around the country use this number for quality control. Once the name of the medication from the prescription is entered into your profile, the computer finds the NDC # for that medication and attaches it to your name. Those labels on your pill bottle are printed out. Your label is scanned then the manufacturers pill bottle is scanned. Notice the bar code on the right. The numbers on the barcode are the same as the NDC #. If the NDC # on your label does not match the one on the bottle we pulled from the shelf we know we grabbed the wrong medication. 

Congratulations! You learned something new today. 

Saturday, January 11, 2014

Raising Awareness

It was brought to my attention that Dr. Sanjay Gupta has mentioned me in 2 more articles. For those of you that don't know, Dr. Gupta is an assistant professor of neurosurgery at Emory University School of Medicine and associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, Georgia. He is also the cheif medical correspondent for CNN and has been a guest on Larry King Live and Anderson Cooper 360. His resume is VERY impressive. 

I love that I am one of  Dr. Gupta's trusted resources. I love even more that Rheumatoid Arthritis is getting a voice not just in the medical community. I have the two most recent articles written on 10/31/13 listed below. Just click on the links. 

Wednesday, January 8, 2014

Meet Diesel

Last we left off I was about to undergo knee surgery. Well that didn't happen. In the days leading up to the surgery I had been experiencing abdominal pain. The day before it got so bad I was vomiting, had no appetite, and no position could get me comfortable. Thinking it was maybe appendicitis my mother in law called an ambulance. I couldn't even straighten my body out. Curled up in a ball I was on my way to the hospital. That was about 3:30pm on Oct 30. 

Once at the hospital I was given pain meds immediately. It was decided they would do a contrast CT scan. So I drank that chalky drink. Which actually tasted good because I was so thirsty. They injected me with dye and did the scan. 

I go back to my little ER room and I wait for the results. At 5:00 a nurse came in the room with a phone. She hands it to me. It's the on call surgeon. He introduces himself and says they found a 4mm mass in my abdomen. He had been going over the scans at home for 45 minutes on the phone with a colleague. They both decided exploratory surgery in the morning was the best option. 

The next morning the surgeon did one more scan before wheeling me off to surgery. He made an incision from my sternum all the way down just past my belly button. At first he didn't see the mass. Then, as he took my insides out one by one, there it was. Behind everything. A mass the size of my fist. A mass I have since named Diesel. 

Removing Diesel was not an option. There were so many arteries and veins intertwined. Taking a biopsy was even difficult given there was also tons of necrotic (dead) tissue. The surgeon stapled me shut and went to talk to my husband. 

When I woke up I was in a new hospital room and Joe was next to me. Seeing his bloodshot eyes I immediately got a sinking feeling in my stomach. He saw I was awake and told me the news. They were testing me for cancer. The mass is inopperable. They think it grew pretty quickly. I then became aware of the tears running down my face. I couldn't move though. I could feel the staples down most of my torso. It hurt to breath. There was a tube going up my nose, down my throat, into my stomach draining it. I remember my limbs feeling like concrete, hard to move also. In my hand I had a button to press every few minutes if I was in pain. It would feed medicine into my I.V. to give me relief. 

I stayed in the hospital a total of 7 days. I didn't get to have any liquids until day 6, solids finally on day 7. I guess my insides were so disrupted they wanted to give them a rest.

I was blessed with visitors, flowers, and gifts. It was a great distraction for me because I was so scared. I am still in awe of how many came forward to offer their services and help. I say blessed because so many never find out the influence they've had on people until they have passed on. I found out when I needed it the most.  

2 different labs came back with pathology on Diesel. They suspect no cancer but tissue is abnormal. They do know that the tumor is made up of necrotic tissue, fatty tissue, inflamed tissue, normal lymph nodes, inflamed lymph nodes, veins, and arteries. 

I am in pain because Diesel is still insde my abdomen. It's still a challenge to sit upright for a long period of time or bend down to pick things up. I've had a few follow up appointments with the surgeon and his solution for not knowing what is growing inside me is to keep tossing pain killers at me. Hearing this my Rheumatologist was floored. She immediately made an appointment with one of Harvards top surgeons for a second opinion. I go on Monday. I also have to wait to go back on any of my RA meds until Cancer is 100% ruled out. So we hurry up and wait...

Friday, October 25, 2013

The last of the knee updates (for now)

So last I left off with my knee surgery recovery I had the splints. One for flexion I wore at night and one for extension I wore during the day. All summer. The long hot summer. Splints 24/7. Well I can tell you now it was so worth it. 

As I pushed myself with exercising and physical therapy I could see more mobility everyday. It was minimal but it as there. I think that's the most challenging thing about recoupration. We expect big changes right away and when that doesn't come, well, we are discouraged. 

So here I am at the end of the summer and guess what!?!? I broke the wire in my knee. I heard a pop and went and got an xray and sure enough, (don't worry, that's a good thing) the wire was broken. I went in on Aug 15 and got the wire removed because as you can imagine that didn't feel good poking at the cartilage that was left. It was a 6 minute surgery no joke. It took 2 hours to drive there each way and it took 6 minutes to take the darn thing out. Here's a picture before they took it out.

The next day I was immediately back in therapy and already saw a few degrees more mobility. Since then we've been pushing hardcore to get everything back to normal. I can tell you that as of this past Wed (post op 9 months) I can extend my knee fully and my flexion is at 120 and climbing. 140 is perfect range of motion. I'll be there in no time. 

I had a follow up with Dr. Davis up in Boston this past Tues and he said I am ready for knee number 2! It's funny because I have been limping for a few weeks and I've been frustrated with some new swelling that has occured (post op knee). I had also noticed that the right knee that hasn't been fixed yet was also causing some pain. Dr. Davis gave me a Synvisc and a cortisone shot to give me some releif until surgery. I can't beleive it! no limping. I was in so much pain on the right that I was over using the good knee. The one I had fixed. Since the shot I can walk normal. 

I just got the phone call that my surgery will be next Thurs Oct 31! OMG I'm super excited. That means by the summer I can swim, ride my bike, dance, have fun on vacation at the Jersey Shore. This is the begining of a new life and I can't wait to embrace it. I've been through the worst of it. I know what not to do to mess up my therapy. I am amped up and ready to go! Wish me luck!

Sunday, August 25, 2013

Little Old Me

Click here to see the article in Everyday Health written by Dr. Sanjay Gupta featuring me!! If you aren't aware of who Dr. Gupta is (I wasn't until after the article was published 2 days ago) here are some of his credentials copied from the Everyday Health website.

"Dr. Sanjay Gupta is a practicing neurosurgeon and associate chief of neurosurgery at Grady Memorial Hospital and an assistant professor at Emory University Hospital in Atlanta. He is a columnist for Time magazine, a contributor to CBS News, and a chief medical correspondent at CNN."

Um is it unprofessional to say he's hot too??

I love that I am able to spread awareness about Rheumatoid Arthritis. I am thankful people listen. 

Friday, August 9, 2013

How I did it!

Many times I get asked what I did to get myself into remission. I thought I'd write a post sharing just that. I actually spent the good part of a year in bed. All that rest did play a good part in my remission. I understand that it's not realistic for most of you to do. My wish is that you take what works for you and integrate into your life and your routine. I was able to test my knowledge on a friend of mine recently. She has been flaring for months. She took what I've learned, used it, and is in much better shape than she was. I'm hoping I can help you too.

UPDATE: The friend I mentioned above is now in remission! I think I'm on to something here!

Educate Yourself
Know your disease and what makes it tick. With all the misinformation out on the Internet it's hard to get a good handle on what Rheumatoid Arthritis is and what to expect. A while back I made a post explaining just that. Click here for the post. Other trusted sources are the Arthritis Foundation and the Center for Disease Control.

With RA comes multiple medications covering many different medication classes. It is key to become familiar with each medication class and how they will play a part in fighting this disease. Learning about them will make you a better advocate in your care. RA medications and their side effects can sound scary. Remember the doctor is prescribing them because the benefits to you outweigh the risks.

Another point I want to touch on is that you need to take your medications exactly as directed by your physicians. Taking a medication 3x a day does not mean breakfast, lunch, and dinner rather every 8 hours. Never discontinue a medication without your doctors consent. Doing so may be deadly. 

Your Wellness Team
Become familiar with the roles of every one involved in your care. You will have many different professionals advising you in your road to remission. Knowing what you should expect from each one will enable you to see the big picture and feel more in control.  Your wellness team doesn't stop there. Your spouse, family, and friends can also be of some support. You must feel comfortable communicating with everyone. If you feel uneasy then change things. You teach people how to treat you.

Another point I want to touch on regarding your personal relationships. Make sure you give the good with the bad. I have a very dear friend that always took me to my infusions at the hospital. We got into a routine, every few weeks, we stopped at Dunkin Donuts before, we had a certain section in the room we would sit.  We spent the afternoon catching up. After she would bring me home and stay for dinner with my family. She made infusion day really nice. She's an angel here on earth. She really comforted me which is why what I'm about to tell you never occurred to me. Seeing me in the state, driving me to the hospital, and taking care of me...she saw sick me. She never spent time with “well” me. I would have a spurt of energy and I would go out and have a good time. It never occurred to me to call this good friend because I saw her quite a bit already with my infusions. She ended up being really hurt and had every right to be. She told me she missed the old me. And out of everyone, besides my husband and daughter, she deserved to see and enjoy the times when I felt like my old self. So please remember to keep that balance. 

There are many diets, supplement drinks, and programs out there claiming to cleanse your body, cut down on inflammation, and some to even cure arthritis. I am here to tell you tread lightly because most are a scam. Don't waste your money. You can figure out a diet yourself using your doctor. Eating healthy and portion control will always benefit you RA or not. For every 1 pound that you are overweight that’s 4 pounds of pressure on your joints. The hardest thing to do when you are stiff and in pain is to exercise but honestly that makes a world of difference. If you can get moving just a little it will help in the long run. It can be as simple as walking up and down the hall. Any movement.

There are many arguments that avoiding certain foods will lessen the inflammation in your body. This is true. However, it's not the same foods for everyone which is contrary to popular belief. Tomatoes may cause you inflammation but for me I can eat them and I am fine. There is a blood test called the LEAP MRT- lifestyle, eating, and performance mediator release test. Your doctor can call Lab Interpretations, LLC at 1 (775) 851-3337 for the test specimens.

Buy a day planner, an app for your smart phone or tablet, something you can keep with you all the time. I have included a picture of mine. Every Sunday I write down in the to do section what I need to get done by the end of that week. Phone calls to doctors and insurance companies, picking up a gift, mailing something out, working on my blog. Any little thing that needs to get done. On Monday if I have the energy I'll do something on my list. If I don't have energy I'll do it Tuesday and so on. You do what you are up to each day. Having it all in front of you will make it easier and less overwhelming to get things done. 

Journal how you feel. Keeping track will help you to spot patterns. Are there days where you feel 20% bad and 60% good but you go out and do things as if you feel 95% good? Think about how you can change things. I had a friend that would go to the doctors twice a week. After the doctors she would be hungry.  She figured since she was already out of the house she would go sit down at a restaurant and eat. Going home and cooking would take to much energy and everyone has to eat right? One day I asked her to try something. Get take out. Go home. Get snuggled on your couch in your jammies and slippers. Then eat your lunch. After doing this a few times she saw a huge difference in her energy level. Just from that minor change.  

If you look at everyday I have a few hour span where I can rest. That is key. I know a lot of you are reading this and thinking of why you don't have time to rest. I am telling you, right her right now; Stop the excuses. You are reading this post because you want to be in remission or stay there. I can not stress enough that you need to rest each end every day. If you are serious about changing your life to get to remission you will make time. Which brings me to the next topic.

Listen To Your Body
Know your body. Listen when it's tired. Think about what you just did and how you can alter next time to save some of your energy. Every bit counts. Use assistive devices anytime you can. Who cares what  you look like. Try and tell me that saving energy with assistive devices, energy you can use later in the day, is more important than time with your loved ones. 

The medications that you take weekly, take them on the same day. Then you will hopefully only have one hangover day. Always plan your hangover day on a free day, or a day that you have the least going on.

If you have a good day don't start acting like your RA is cured. You and I both know there is no cure. You are having 1 good day. Why not go at a medium pace instead of full throttle. You will thank me for this the next day. And maybe, just maybe, you might feel good for 2 days.

Don't Assume Everything is Because of RA
I was exhausted. I was sleeping 18 hours a day. Never felt rested. Well of course! I have RA don’t I? I am on medications that exacerbate any sort of sleepiness. My rheumatologist couldn't figure out why nothing was working. Why I was in so much pain and my blood work was coming back normal. At some point she suggested a sleep study. I figured I'd get around to it someday. I just wanted her to fix my RA before I even dealt with something else that might be wrong with me. 

This time last year I went on vacation. The friend I was visiting asked me if I knew that I gasped for air  during the night. Apparently she had heard a choking sound a few times. She actually tried to wake me and couldn’t. I just kept snoring away. When I got home I went to my GP and she sent me to a sleep doctor. Well the sleep doctor could not believe I was functioning after I told her my symptoms. I kept saying “yeah but this is all just because of my RA”. She kept saying something else was wrong.  

The next thing I knew I was packing my overnight bag to stay at the hospital the next night for a sleep study. OK, I thought, I'll humor her. If nothing more than to tell her she was wrong. So Saturday night I went to get my sleep study done. The results were so bad they expedited getting them to my doctor. Instead of the 2 week waiting period I was in her office Monday morning. I indeed had severe sleep apnea. I stopped breathing 40 times an hour up to a minute each time! I was only breathing 20 minutes of every hour! That night I start using my CPAP machine she prescribed. The next morning I woke up rested. As the weeks passed I noticed my blood pressure was lower, no more night sweats, pain and swelling went down, and I had so much energy. I went to see my Rheumatologist. Then she says that word to me. That word everyone longs to hear. REMISSION! REMISSION! REMISSION! All this time I had been in remission. It was the sleep apnea. WOW. Just WOW. 

Now there is remission with meds and remission without meds. I am still in remission with meds. With all the craziness going on with my knee I need to stay on the meds a bit longer. Later I will wean off them and that will be one happy day.

I guess the main point I want to get across is its all about priorities. YOU need to make it a priority to change things. What you are doing now isn't working so who could it hurt? I wish you well and I hope you can take something away from this.