Rituxan Thoughts...

I am on day 6 after my first Rituxan infusion. Last night, and today, the shortness of breath is finally subsiding. I still get short of breath after activity, but the duration is shorter. I recover quickly. Unfortunately, my pain levels are unchanged, and swelling in my hands is worse. My next infusion is April 30th. The doctor has been very communicative, and the pre medication protocol has been discussed in detail. It always feels better when you have a plan. ((-:

I don't usually document so much information about my treatments on my blog. However, this week, has been so difficult, and I discovered very few people to share experiences with, so, maybe this will help someone else in the future to not feel so alone in their reactions to Rituxan. I also discovered that I was relying too much on one or two internet sites for my Rheumatoid Arthritis information. I "branched" out on my own and did a lot of independent research and actually found a lot of good information out there. It took work, and diligence, but, I am understanding the protocol and the drug treatment clearly.

Many thanks to my family and friends that stuck by me this week. I did a lot of leaning and I appreciate the support...!

I still have my positive attitude and hope that this drug treatment WILL work.

My picture for this blog post is a favorite I took a few weeks back. I chose it, because it is a favorite and I reflected on it a lot this week, as one of those "pieces" of a great day...which carried me through the rough days.

A joyful heart is good medicine, but a crushed spirit dries up the bones.  Proverbs 17:22

Blessings ~~ Kim

Rituxan Reaction Continues

I am 3 days in to my Rituxan dosing and have yet to stop with the reactions. I have severe shortness of breath, rheumatoid pain and swelling in the hands, knees, and feet. My breath is so short, I am not able to speak on the phone in conversation. I had to draw a picture today of what I wanted at the store, because I could not "describe" it in speech without feeling like I was running in a marathon. Fortunately, Tom understood my drawing! I have been in contact with my doctor, she is aware and very supportive. I have promised her if I feel as if I need to go to ER, I will. We are trying benedryl for the next 72 hours. I am blogging and documenting this, so as to help others with Rituxan reactions and or treatment. I ask and ask those who have taken Rituxan, please share your experience. There is such a lack of information on this topic in RA world. I would really like to change that for the next person who has to take the medication. It is frustrating to feel alone in this medication treatment choice. I do know this, everything I have been able to read, has been positive. If I can just make it through these side effects, the potential of this medication truly helping has good possibilities for me. My next infusion is April 30. The doctor has already started planning to pre medicate me before I leave the house with benedryl, steroid, and Tylenol. So, once again, I ask... Please share your experiences. Thank you for your help... Kim

Rituxan Treatment and Infusion Reaction

My list of treatments for rheumatoid autoimmune reads like a list of popular, everyday commercials; Humira, Remicade, Cimzia, Orencia.  Methotrexate has been the only constant. And, go figure, it is the one that is in a severe shortage through the nation. All the other treatments, while they may have started out well, the relationship always ended with an allergic reaction or adverse effect that required me to discontinue the treatment.

Rituxan is considered the "big guns" in RAD. It took a lot of research, prayers, and talking, to get me to agree to this treatment. The side effects are pretty intense, but then the pain these last 10 days has been the worst. The pain level actually helped me make the decision. I also had a very nice Rheumatologist in Germany,  Dr.Lothar M. Kirsch, who gave me a lot of good information via twitter and his Blog - Rheumatologe. Between my own Rheum Doctor (Who is awesome ), Dr Kirsch, and a very good friend of mine, who reminded me, *Knowledge is power* (Keith-- that would be you!) I set out to research what I could about Rituxan. I was getting very little feedback from twitter and my other RA support sources. My research helped me to find several clinical studies endorsed by the American College of Rheumatology these studies were very favorable. Making my decision to treat, even easier.

I am starting to write this blog as I am sitting in the cubical awaiting the first dosing infusion of Rituxan. The nurse is confident and she was able to get my IV in with one stick (I am a hard stick). Thirty minutes prior to the infusion beginning, They have loaded me up with Tylenol, Benedryl (Orally) and 100mg of steroid (IV), to counter act any reaction I may have. I am in a hospital based setting, Sylvester at Deerfield Beach , with a nice ratio of nurses to patients, which is helping to ease my anxiety. Everyone is always so friendly here. They are constantly monitoring my vitals and keep checking on me. That alone is a comfort. The Rituxan has just started to drip in, I will be here for 5 hours. So far, I am feeling a little drowsy from the benedryl, but otherwise unremarkable. (My blog writing is is discontinued here, as I begin to have a reaction.)

(I resume writing this blog the following day)---  back to the infusion--I started to feel "tired", and I put my IPad away, maybe it was time for a snooze? I then started to feel an intense itching in my throat, the kind of itching I get when I am about to have a full blown "pollen" reaction. Then, congestion, my ears fill up, vertigo, sweating, and a constant clearing of my throat. I called the nurse over. She immediately stopped the Rituxan and called the Physician Assistant who is on the floor. They checked my vitals (I had a BP cuff on that had been automatically taking my BP) and they ordered up my benedryl in the IV stat. I was next to the pharmacy, so it got to me within seconds. The benedryl was adminstered, my doctor was called. The nurse explained very clearly everything that was going on and answered all of my questions. She explained that we had started the drip at 50ml, increasing it by 50ml every 30 minutes, until it reaches 400ml. Since I had a reaction, we had to drop the drip dose back again to 50ml and wean back up again. However, we could not start again, until my reaction went away. The nurse jokingly said, "You and I might be having dinner tonight!" The benedryl started to really kick in, the symptoms were gone, we started the dosing again. 50ml, 100ml, 150ml, .... oh oh... here comes 200ml. At 200 ml, I was admittedly a little nervous and I start to feel congestion. I decide to chalk it up to anxiety, I meditate, practice some mindfulness, and the 'feeling" goes away. In the meantime, my nurse is constantly checking on me. 250ml.... I am fine and so on it continues... in the last 15 minutes of the now 8 hour infusion... I hit the 400ml dosing!We finished the bag!

I got home, and I was almost giddy... that I had made it through the infusion! I emailed my awesome Rheum Doctor, and asked her if we could start with benedryl in the IV rather then orally for the next infusion in 2 weeks. She readily agrees. That is what I love about my Rheum team... it is truly a team. We have a game plan, all of the member's input was acknowledged and taken in to account. I have absolutely no fear of my next infusion. I know what to expect, I know I will be monitored. I will also be the self advocating patient and will alert the nurse as to my "quirks"  of the last infusion. (Unfortunately, my nurse of yesterday is moving to another location....or I would request her!)

Today- one day after the infusion, I am feeling good. I actually went to a favorite wild life refuge and took some pictures with my new lens I have received for my birthday.

 I was just sitting on a bench, "waiting" for the wild life, and this great Egret, in full breeding plumage came along and demonstrated his skills at finding a snack....of Sushi, as you can plainly see!

 

I fall back, to my favorite verse....

Philippians 4:13  I can do all things through Him who strengthens me.

Blessings....... Kim

A New Paradigm

Anyone who has known me long enough as I navigate my autoimmune diseases, knows that I have been determined to keep these illnesses from defining me. I have it in most of my profiles, "autoimmune diseases will not define me". That is an unrealistic goal, and I am realizing that I need to switch up my paradigm when it comes to autoimmune and how it affects me. While I can not allow the diseases to run my life. I am able to determine how I am going to function with the disease being a part of my life, yet not consuming my life.

In a previous blog, I discussed how I was trying to make appointments with myself. I continue to make these appointments. But, in reality, it is hard to schedule appointments with myself, while I am sick and recently, Tom had been ill. I cherish these appointments and truly look forward to them as a way to escape the pain, medical procedures, etc. I had an appointment yesterday, with the manatees, to grab some photos of them. The "appointment" went way too fast! It started and was over in a heart beat. The activities making me feel most fulfilled and peaceful, are any activities that involve my photographing wildlife. Prior to my diagnosis, I was training Annie to become a field champion. I really enjoyed the training, but, now, looking back at it, was I enjoying the training, or, was I really enjoying being outside in nature? I think it is safe to say I was enjoying nature, using training Annie as an excuse. Don't get me wrong, training was also a mental exercise that i enjoyed, but I think the fact that I was outside contributed to my enjoyment.

I am switching my paradigm to cope with the ramifications or side effects of my chosen activities and how they affect my living under the autoimmune disease umbrella. Yesterday, after the photography, I knew I needed to rest before the drive back. (I also needed a pain pill). I went to a local country restaurant, grabbed a good breakfast and relaxed, allowing the pain med to work, preparing for the drive back. Only months ago, I would not have taken this "break", I would have continued to "mow" through my disease, and come home exhausted. But, by taking the break, I was able to come home, still needing a rest, but not paying for my activity the next day. Baby steps.. Breaks, taking a breather....this is a shift in my paradigm of only last month.

Most of my "wildlife" photography in nature is done alone. Yesterday I had the pleasure of a good friend coming with me. I enjoyed his company, and his thoughts on what the manatees were doing. He also encouraged me capture an osprey with some fantastic lighting, and answered a very important question about a new lens I was looking at, for the first time, I can tell you what I want for my birthday! I also had my own assignment for myself of working some of the rules of photography. After our photography session, we discussed how important it is to "keep" a piece of these "good days". If we "store" up these good, positive, and productive moments, they can be used as reserve for those days when... your medical diagnosis can and will become all consuming. The lesson was not lost on me, however, the lesson was magnified when I got home. Sitting on my Facebook page, is the accompanying picture. Rick, the friend who was with me, had captured me, in a moment where I was deeply focused on the manatees. At first glance, I became vain, seeing the flaws of me in the picture. Upon further discussion with Tom, Rick, and Leisa, they all pointed out the positives in the photo, that photo has now turned out to be a true favorite, a photo I will cherish. As Rick said, he was just trying to capture a "piece" of the day for me. He did capture a piece of the day, but it is up to me to "utilize" it to its full potential. And... I plan to do just that, starting today......

 God satisfies me when I am thirsty and fills me with good things when I am hungry.” Psalm 107:9

Photo by Rick Wood ~ 4/2012
Rick C Wood Photography

Blessings ~ Kim

Research Money Needed.....

Appointment With Self

The last weeks have been busy. I have been completely consumed by treating my Rheumatoid Autoimmune Disease. (RAD) Each week is filled with medical appointments, some days, I have 2 to 3 appointments. One week, I counted 8 medical appointments in the week!

Having a disease such as RAD can be a full time job, and it can consume your lifestyle. I started to see RAD consuming my life. I was waking, breathing, eating, drinking, living, sleeping, Rheumatoid. My appointment calendar, is full, doctor appointments, doctor notes, phone conversations, lab tests, etc. I took a look at the calendar recently and noticed, out of all the appointments, not one was an appointment that was made by me, FOR my enjoyment. . In order to make an appointment for me, I needed to unload responsibilities that were causing a drain on my time, and prioritize my needs and wants above others. This was a hard concept, and a lot of people did not understand, some even questioned, "was this my decision?". I can assure you, it was my decision, and I feel liberated that I actually looked at my needs first, for a change.

My appointment with myself, had to wait unfortunately. Because, I became ill from Orencia. But, I assured myself, that the appointment would come as soon as I felt well enough. I made the appointment with myself several times, and had to cancel, due to illness. But, I continued to make the appointment.

Today, I am pleased to say, I made the appointment, and... I kept it! My appointment was with my favorite wildlife, that I find so soothing, sea turtles! I was up early, and went off to my favorite turtle rehab facility, Loggerhead Marine Lifecenter with my camera at my side. I spent a little over an hour with some of my favorite "patients", snapping pictures. I came home, was exhausted but satisfied! After recovering, with a nap and a snack, I checked out the pictures I had taken. Downloading pictures is almost as much fun as the trip itself.  It felt so good to have a camera in my hand again and to have memorable pictures. Many thanks to Chestnut, the critically endangered Kemp's Ridley turtle, for being my "model" today! You were so cooperative... And provided me with so much healing entertainment...and Chestnut, be assured, your appointment for release, will be here, before you know it....

A joyful heart is good medicine, But a crushed spirit dries up the bones. Proverbs 17:22

Blessings ~ Kim

A ring that fits.. always....and forever...

I have not posted in a long time... I have been thru another medication that did not play nice with my RAD system.  Orencia... sorry to see you go after only 4 injections. I say, "sorry", because the injection itself was an easy sub q and could be done at home. Basically the Orencia, caused a horrible cough, immediately after injection... we tried "one more time"... and that last injection caused a cough, AND an upper respiratory infection that would not be beat. 10 days later... and I am starting to feel human. Yes.. I have another plan of attack for my disease.. which will come later in another blog.

Having Rheumatoid Autoimmune Disease (RAD)...I have become deeply aware of the fact that I can not wear my wedding ring. I have been married for almost 27 years, that ring was/is a "part of me".. I could wear it some days.. and then others.. it would not go on, or, my biggest fear, not come off, due to hand swelling. Somebody in my travels, suggested a tattoo. I have a tattoo.. on my leg, I am stoic, they truly do not hurt, and I have never regretted that tattoo.

A wedding ring is a "forever" symbol of my love for Tom.. a tattoo was the answer to continue to symbolize our marriage on my left hand. I found the perfect tattoo artist at Ink Addiction in Stuart. The artist "free handed" the "ring" tattoo... and, I absolutely LOVE IT, it is the simplicity of the heart, showing my true devotion to Tom.  My doctor equally loves it, and is actually suggesting it to other patients... I will be back... to Ink Addiction.. for that Sea Turtle tattoo-- no worries!

And now these three remain: faith, hope and love. But the greatest of these is love. 
1 Cor 13:13

Blessings........ Kim