Sunday, September 12, 2010

Yet Again, WHERE IS MY DOCTOR!?!?! I have been telling most of you that I have been trying to get a hold of Dr. Rodriguez and he has yet to return my call!

September 2, 2010 - Treatment Day. I had written and told some of you that my chemo (Remicade) was going to be changed from the 5mg/kg dosage to the 10mg/kg dosage. The time was going to be decreased from every 8 weeks to every 6 weeks. Well on treatment day Mrs. Rene let me know that she had finally got a hold of Amity (Dr. Rodriguez's chemo nurse) and she had stated that the order for the Remicade was no longer in effect. I don't know how it was worded...but the point is the Remicade wasn't changing and was still 5mg/kg and every 8 weeks.

I was mad. Why? Dr. Rodriguez had told me that he had already sent in the order. He also said that he was ordering it 1- because he was scared I was building antibodies (raising dosage would change amount that body was used to so if antibodies were building it would be a change and would throw that off from happening anytime soon. 2- I'm not getting better so we needed to raise to the chemo so hopefully I would begin to feel better...I'm not going to say remission, because we are nowhere close to that....we just want me to feel better.

Ok so first problem - chemo not changed.

Mrs. Rene then informs me that the Cura-Scripts (whatever its called) did not send my chemo. (With this stupid company evidently you have to answer when they call the few days before and say yes to sending the order. Well that is ridiculous because if a doctor gave an order and it is approved by HAVE to do what the doctor don't call the patient asking are you ready. That is crazy. Whatever doctor says...goes!)

Now let me explain this. Originally Blue Cross Blue Shield (BCBS) had sent an order to Vital Care (the IV company Mrs. Julie is with) to be my Remicade supplier. They pre-mixed my chemo, brought it to the house, provided the pump that enabled me to walk around, provided the huber needle for my mediport, provided us with the heparin and normal saline (already drawn up as well), and always brought me a sweet little goody bag. Well they supplied me for a whole three treatments. After the third treatment BCBS also sent an order to this stupid place called Cura-Scripts or something like that. Well this company sent the vials of powdered Remicade and that was ALL! Mrs. Rene would have to mix on site, would have to mix with the bag of saline, had to supply the huber needle for my port, had to supply my heparin and my saline flushes, we had to HANG MY BAG OF FLUIDS WITH THE REMICADE FROM A HANGER ON A NAIL! It was just ridiculous. This company was just a prescription supplier. I didn't need a prescription of Remicade I NEEDED A TREATMENT OF REMICADE!

So anyways...BCBS never stopped the order to both places. So Mrs. Julie's company had a Remicade from the time both orders got sent. Well that company just stopped the order even though they had the order because they knew the other company was sending and they would be out money.

Well when they didn't send my chemo on the 2nd...luckily Mrs. Rene was able to get a hold of Mrs. Julie's company who still had that Remicade from that previous time. Well they saved my life because they were able to get a hold of it. All of us were just going to tell BCBS in sweet terms "Get over it" (but in worse words). that was the second problem.

So today which is 1 week and 3 days after treatment. I feel like a train hit me but in a worse way. I am swollen everywhere and I have called the Emergency on call doctor at Rodriguez's office. My throat was closing as well as everything else swelling so I just took some benadryl. If it gets worse he told me to go to the ER. Well we are waiting on him to call back....

We don't know what is happening right now, but we are very scared. I as a nurse am thinking one of two things:

Either I am on so many medicines that my kidneys are failing (all the swelling, plus the fact that I'm having trouble urinating...I'm having urinary retention. I have to push down like I'm having a bowel movement to be able to push the urine out)

or Either it is that I built antibodies to the 5mg/kg and I am having a bad reaction. If this is the case I will not be able to take chemo anymore and I don't have an option left because with me the chemo and upping the dosage was my last option of treatment...if this is case then I will just be put on more pills that don't work and eventually it will just take surgeries to fix problems that get worse.

So you all see where I'm at right now. I am fine...just needing answers, because whatever is happening doesn't seem too wonderful right now. I'm swelling all over for a reason. It hurts to move and it hurts terribly to get up and walk. My feet feel like they are about to pop when I walk on them....

As a nurse I know that while symptoms are worse I need a way to prove so I felt smart because I took pictures. Now you will see pictures where I push my finger to my skin and then the next picture is where I removed my finger. This shows the pitting edema. (fluid and swelling of the skin and what the depth of this swelling is/pretty much how bad) (I don't feel like explaining it just will know when you see) When you press normal skin it goes straight back to what it looked like before you pressed it...Well my skin is living an indention for a little while...

What I'm feeling right now : Well I just feel bad. I feel tired. My fingers are killing me, especially at the joints. My wrists, my face (canker sores in mouth), the bottom of my feet on the pads, my knees, my hips, my you get the point...EVERYWHERE! and that is with my pain medication...its crazy

No more talking...these pictures say it all! (Also..the pictures of the pills are JUST what I had to take THIS MORNING...not all the pills for the day!)

I'm ok... I love you all...don't think I'm upset...I just don't feel very well writing this and I love you all and just wanted to keep you all up to date with me...just don't feel good! I love y'all and pray that the doctor calls soon!

Wednesday, September 1, 2010

Hopefully Just the Start of Me Becoming Pain Free

So yesterday as you all know was a very LONG and EXHAUSTING day.

First off, Dad, Andrew, and I got up very early that morning to head to Mobile. Papa Bear is what I call Andrew's dad for future reference. Papa Bear was having a heart cath and had to be at Mobile Inifmary at 8 AM. We arrive and meet Mrs. Judy in the admission waiting room. After Papa Bear finishes his papers we go to the cardiac floor. His male nurse whose name was David was a very nice man. I was very pleased with the people taking care of him. It was probably around 10 30 when he got taken back. They told us that we should receive a call in the room 30 minutes after them taking him back. They would let us know if anything was found or if the procedure was finished.

Thirty minutes later I answer the phone. We were notified that they had found a blockage. We all had know that would happen so we were not alarmed...just praying for safety. I asked the percentage but at the time he said the doctor was not sure, but they would be placing a stent. They said give about another hour, so we all took that opportunity to go to the cafe below and eat. Dad, Mrs. Judy, Andrew, and I ate and then headed back up. It was about 12 at that time and we knew that we needed to soon be heading across the street to the Physicians Pain for my appointment. Papa Bear comes back. We later found that it was a 75-85% took 3 stents for that one blockage! Now if you have never seen Andrew's dad...he is a BIG man. We have heard so many stories about his nickname for him is Rambo! :) Well we gave him hugs and called mom. She was already on Springhill so Dad, Andrew, and I left the hospital and met her at the Physician's Pain building.

When I walked in I looked around and honestly just wanted to cry. I had already been feeling bad that morning, but hadn't told anyone. My stomach was already probably to the size of 6 mo. pregnant when we arrived.

So as I'm looking around, I see one woman who can't keep her eyes open. I see a man who looks like he was on drugs. I see another man and woman who look like they are out of it and my eyes just got wide. Andrew noticed and asked what was wrong....I just told him to look around.

In my head I was going *Lord, I am only 21 years old. Lord I suffer with pain and I need help, but oh Lord you see these people. Most are elder and most of them look completely out of it* The appointment time was set at 1.

Finally we get called back and they let everyone go back with me. I was already flared on my chest and face so I was blood red. I was running a temperature and my blood pressure (all of you should know the norm by now lol 80/60) was 130/92. I knew I was in pain, but it was like I was blocking it out from being so nervous. When she asked my pain scale, I told her a "4" LOL! Oh goodness...there was no way it could have been a "4" my adrenaline was just easing it to make me have no clue the true intensity! *Makes me laugh out loud :)*

Ok. so we go back...wait more. A man walks in. I was assuming it was Dr. Couch, but it was not. His name was Justin. He is the nurse practioner who works with Dr. Couch. He assesses and goes through the papers and gets an overall report so he can sum everything up for the Doctor. He was very kind and empathetic. (previous to this I had to fill out a big pack of papers telling what kind of pain, had to color where the pain was on body graph, describe the intensity, the type, the duration....etc get the point).So he was looking through my chart asking questions. It was even kind of cute because he mentioned he and Dr. Rodriguez worked out together and he would more than likely see him the next day (which is today)...yet again thoughts *OH LORD...more doctors to talk about me LOL* As I said he was very empathetic and very kind. He checked my that time it was swollen to a 9 mo. prego belly. You could tell he was amazed. He checked my joints and I explained about them. I explained my history of how we could trace back problems to 3 and that we were literally trying to make up for all those years untreated. I showed him my fat fluid filled knees. Just everything yall....I could draw this out for I will stop at that.

Then we started talking in depth pain. I told him what I had taken. He asked about pain everday and I told him yes. I told him that I had become numb to so many types of pain. I also explained to him that when I was in pain and took my dilaudid...I would not shut up talking...reason being it's that I'm so relieved and happy because I didn't really realize how much pain my body was truly was in. I got a little emotional...the parents threw in some things and Andrew listened and took everything in.

Well after waiting little bit longer, had to urinate in cup. Dr. Couch walks in. Now before this...I had heard so many rumors about pain management doctors...everybody had talked it up so negative. What they forget is that I am a nurse and I know what types of doctors have what types of personalities and why they have to have them.

Pain doctors are not meant to be emotional and sympathetic to you. They deal with pain...something that is not understood by anyone unless you have had extensive training such as they have. Something that if treated certain ways can change a person, can make a person addictive, can make a person sluggish, can make a person mean...pain can cause so many things, but yet pain treatment can also cause so many things....with this the doctor has to have a cut/dry personality to make sure no emotional attachment is made. It is like a strict business...I hope I'm explaining it in a way you all can understand. It's not that they don't care...if they didn't they wouldn't have chosen that type of medical branch. They just know that they are in control of you in so many ways with taking on treating your pain needs.

So when he walks through the door like I said...very straight forward personality. No time for talk...listen listen explain. Asked what I used when in hospitals. He saw on papers where I had, had an adverse reaction with Morphine. I told him I took Demerol. Immediately his eyes darted and he then went on to explain how Demerol is not good if used routinely. I have not used it routinely...mine has just been a hospital and ER management. He went on to explain that I am very lucky, because with chronic pain, Demerol can do bag things. He said that they can cause seizures, but not the type where you fall on the floor and bite your tongue...he said it was the type where you fall on the floor and die. My parents and I had a wake up call to this. He then also told us that Demerol was invented by Hitler and his scientists. It was made to give to their soldiers for battle. It made them feel invincible. I nodded my head. See everyone knew I got ill on Demerol. It did make me mean, but in all honesty, it was like so much relief from a pain I thought would never go...that when people talked I got ill because I was so relieved I did not want to be bothered. So that was an interesting fact and story.

More listen listen and then looks straight at me "Is this interferring with the quality of your life?" *straight to the point* I was shocked....I told him "It says it on the papers" (see when I filled them out it came to a part where it asked what all parts it interferred on...almost everything was a 9 or 10...the pain is taking away Allison) I then started crying after I said that and said "YES! I'm tired of hurting...I'm in pain all the time" Mom then got a little emotional and said "I don't have the same Allison I had 9 months ago" That stabbed my heart when she said that. It hurt so deep. I know I'm not the same and that hurts because I will never be able to go back and change, I will never be able to say I'm Crohn's free. I will in heaven, but not here.

So after this, this is when I just felt so much peace from God. I was thinking this guy doesn't believe me...and then for 5 seconds Dr. Couch let his guard down and let a slight bit of emotion come through. "I can see it. I can see it in your eyes that you're tired, that you're in pain, that you're tired of being in pain, tired of hurting." For those 5 seconds I just wanted to fall to my knees and thank God. Here a man that studies and knows what pain is better than anyone else...could SEE...he COULD SEE! I wasn't crazy, I wasn't making it up, to all those people that said I wanted a high, to all those people that didn't believe just allowed so much built up emotional pain release. Who cares if they didn't believe or know the truth...the man that knows it better than anyone KNEW and STILL DOES! THANK YOU LORD! THANK YOU FOR LETTING SOMEONE SEE MY INSIDE ON MY OUTSIDE! It's so hard having people tell you, oh you look so good. Yes I might, but oh the inside of me hurts so bad and feels so bad. (I am just bawling typing this, because its like a release of just so many emotions. Happy emotions, but bittersweet. I got help...for once I got help!)

Ok...calming down. So after this we went on to discuss treatment. We are stopping the Dilaudid and Darvocet. Here is what I will be on and what he gave me.

Fentanyl Patch 25 mg - He said that if by this weekend the 25 mg was not making the pain go away to go ahead and put another patch on making it 50 mg. Every 3 days I change the patch.

(copied from website - strong prescription pain medication for moderate to severe chronic pain that can provide long-lasting relief from persistent pain. Through its innovative patch technology, DURAGESIC® delivers fentanyl, an opioid pain medication, into the body slowly through the skin, where it works to relieve pain for up to 3 days (72 hours).DURAGESIC® is strong medicine for serious pain. The DURAGESIC® patch should only be used when other less potent medicines have not been effective and when pain needs to be controlled around the clock.)

Ultram 50 mg - 3-4 times a day

(copied this from a website for you all - Tramadol is a man-made (synthetic) analgesic (pain reliever). Its exact mechanism of action is unknown but similar morphine. Like morphine, tramadol binds to receptors in the brain (opioid receptors) that are important for transmitting the sensation of pain from throughout the body to.)

Zipsor 25 mg - can take up to 4 a day He really wanted this one because he said that it would be good for my Crohn's. You don't even have to digest. It is a gel and once it reaches the pH of your bursts and is absorbed! How neat...but oh HOW EXPENSIVE!

(Also copied this - Zipsor liquid-filled capsules contain the nonsteroidal anti-inflammatory (NSAIDs) medicine diclofenac. This medicine works by reducing hormones that cause inflammation and pain in the body. Zipsor liquid-filled capsules are used to treat mild to moderate acute pain.)

Also. He is going to check with insurance first then set up an appointment. This is my 4th treatment for pain. They will take a needle and go in on both my left and right side of my lower lumbar and inject a medicine directly into the spinal nerves that control my abdomen. This medicine deadens the nerves and will give relief supposedly up to 2 months. If I like it...they can go in and deaden and burn the nerves.

Now. After he told me my four types of treatments. He said that the patch could be upped as we find what works. He then said if this system of treatment doesn't work...he said I don't tell most of my patients this, but after this THERE IS HOPE! I couldn't believe my ears. The next step after this IF this doesn't work...which I am very positive about it...we will go to a knew technology little bugger.

It is a pump planted under the skin. This pump releases medicine. What is special about it is that it is 1/100 of a dose you would take orally. This means that it is less toxic, less medicine, but more effective. See with morphine pumps they release the medicine directly into the bloodstream and it is given in full dosages. With this pump (it is called a CODMAN 3000) the catheter is placed in your intraspinal space. So that means it is directly going to your spinal which is fast relief and like I said less drug, but more effective. I'm going to copy and paste so you can read more. Anyways...he gave us a DVD and a pamphlet. He just said he wanted us to go ahead and be prepared and researched on it in case he wants to change to that therapy later. He said he has high hopes of this if our routine we have set up now doesn't seem to be controlling.

He then went on to talk about my abdoment pain and talked about pancreatic cancer patients and how they have the abdomen pain. So pretty much that is how he is treating me. Since I'm not showing wonderful signs of improvement with the Crohn's, we are going to make sure I am comfortable.

Here is what I copied about the CODMAN 3000 can research it if you like! :

Because life shouldn’t require batteries.
The CODMAN® 3000 drug pump is a proven implantable drug delivery system for the delivery of medications to treat chronic pain, severe spasticity, and cancers of the liver. This elegantly simple device features an inexhaustible power supply, and does not require the frequent replacement surgeries associated with battery-powered pumps.

FLEXTIP® Plus Intraspinal Catheter
The FLEXTIP® Plus catheter is used when the CODMAN 3000 drug pump is implanted for the delivery of medication to a patient’s intraspinal space, such as in the treatment of chronic pain or severe spasticity.

This durable catheter is differentiated from traditional silicone catheters by its innovative design, which includes a titanium-reinforced inner coil to resist kinking.

Key features include:
•19 Gauge catheter with outer polyurethane jacket
•Titanium-reinforced inner coil for maximum durability and kink-resistance
•Wide variety of anchors available

Also we are setting up MRI of spine just to make sure that the pain from my back is nothing but the Crohn's....just to make sure nothing else wrong besides that, since a lot of the joint pain is there. Now my joint pain includes my knees, hips (which pop out), back, neck....

After we finished there, mom and dad headed for home to fill prescriptions. Andrew and I went back to the hospital and stayed with Papa Bear and Mrs. Judy for a little while. Went to eat, got her something. Stayed again a little. Went to visit Mr. Walt (my bebop) and Mrs. Shirley. Got a phone call...the PRESCRIPTIONS WERE NOT SIGNED!!! I was so upset. We then figured that when Papa Bear was released they could go by and pick up rewritten prescriptions...they are listed on my papers (as future in laws) which means they are allowed access to all my records...access to if something happens. You know all that good stuff. so I was VERY thankful that I had listed them and that God had that aligned the way He did. See not just anyone can go and pick up prescriptions for you at a pain management...and truly you are supposed to have the pain patients drivers license. We had left a message however and the nurse said that if their name was on my paper that would suffice since it was their mistake! So they dropped my prescriptions to me at Gifts and Giggles and I placed the patch on at about 2 00 pm today.

Dr. Couch said it would take 10 - 12 hours to kick in so I had gone ahead and took 2 dilaudids this morning because I was hurting pretty bad. So I'm sitting at the store right now. I have a treatment tomorrow at the hospital. Mad about that because remember Dr. Rodriguez said he was raising chemo and cutting shorter...well got news that he isn't doing that and he never informed...ok calm down not getting into that! So I have a treatment tomorrow and we have about 60 soriety bags that have to be done and I didn't want Mrs. Becky having them all on her so I told her I would stay later tonight to get as much done since I will be out the rest of the week resting from the bittersweet treatment.

I love you all! Without your prayers yesterday, yesterday would not have gone as well as it did! Thank you for prayers for Papa Bear. He is safe at home right now and recovering every second! We are so thankful God watched over him and still continues to! Just yet again to all of you that sent up prayers...THANK YOU! I love you all! I am hoping that this is the start to ALLISON MARIE KELLY BEING PAIN FREE!!!!! I know it will take time for everything to build up in my system and for the pain to start truly being relieved but I am just so excited knowing that this is just the beginning!