The Drug We Love to Hate- Prednisone

I mentioned in my last Blog about High Dose Steroids. How many of us with Rheumatoid Arthritis take steroids at high doses to stop a flare? After reading this blog, you may want to speak to your rheumatologist about somehow curbing the use of steroids until it is absolutely necessary. Don’t get me wrong, I have used steroids and saw the potential of their use, but I have developed an illness now that prevents me from using them as I did in the past.

After Xeljanz failed me, I went in to a serious flare up of my disease. So, We (my rheumatologist and I) decided to go up to 40 mg of steroid to see if we could curb the flare. I also was given two injections of solumedrol. The combinations of these high dose steroids turned me in to the “Pillsbury dough boy” with Cushing Syndrome. I was extremely swollen and my face was puffy and round. This was around Christmas time. I felt very fatigued, weak and frequently out of breath. I blamed the Cushings and took a lot of rests and naps.

On January 15, 2014, I went down to Miami for a simple follow up with my cardiologist. In taking my blood pressure and pulse ox, they noticed that my lips were blue and I had a pulse ox of 66. At their insistence I went to ER, which was on the same floor. Apparently, according to them, I was not very cooperative and I kept telling them I was fine. (I truly don’t remember). Tom was called and he came down on the Tri Rail, because I didn’t think I could drive home. Not only was I not able to drive home, I was admitted! After a Bronchoscope I was diagnosed with PCP Pneumonia. (Pneumocystis Pneumonia ). PCP is a common pneumonia in people with immune system issues and is very common in the HIV community. My pulmonologists all agree that the pneumonia was brought on by my use of steroids and Rheumatoid Arthritis treatments.  The equally disturbing thing about PCP pneumonia is that once you have it, it is always harbored in your system and if I choose to do any sort of immunosuppressant therapies I will have to be on specific antibiotics. For me, that means Mepron, because I am allergic to Bactrim.  I ended up being in the hospital for 16 days. Due to the fact I am allergic to each antibiotic that they tried on me.

Due to this medical episode, I have now added two more doctors in to my calendar. A Pulmonologist and an Infectious Disease Doctor. Not to mention, if I choose to treat my RA, I have to be on expensive antibiotics in addition to my RA medications. In all of my treatments with steroids, nobody every told me about this common side effect of high dose steroids. So, consider yourself warned, we all take steroids and if you are like me, you think the side effects won’t affect you.  Well, I am here to tell you, the side effects are to be taken seriously.  Please be sure you understand and ask questions before your next high dose of steroids. 

Do You Overlook Symptoms?

My experience, with Xeljanz is purely anecdotal; this is my experience with the drug. Please take the information given for what it is, just one person’s experience, as we all react different to medication.

I started taking Xeljanz on April 24, 2013. I had high hopes and I felt relief within a week! My fatigue was no longer an issue, my RA pain and swelling were reducing every day.  My blood-work was even correlating with my symptoms! I was not 100 percent, but I was managing. I still had to plan out my activities and be careful to not over do things. I couldn't overdo, because the damage from RA could not be repaired by Xeljanz. I was on it for 7 wonderful months. I traveled, I went places, I got the house in order, I used every second of time that I could. Around August, 2013, I noticed an increase in pain, I attributed it to “over doing” it. I increased pain meds, and kept "maintaining" however, my blood work and inflammation markers tell a different story. Early in November 2013, I woke up in incredible pain and swelling in hips, knees, ankles. I increased my prednisone and I emailed my rheumatologist, all through the next week, we emailed, increasing the prednisone with every email to try and get a handle on the pain. My Rheumatologist also asked me to stop taking the Xeljanz at this point. I really did not want to stop taking the drug, but I complied with her wishes.  My pain became so severe that I went to an urgent care up here and asked them to give me an IM shot of 60 mgs of Solumedrol. The clinic complied. It helped for about 24 hours and then the pain and swelling were back. I was now on 40 mgs of prednisone and still very swollen and in a lot of pain. I saw my Rheumatologist on Nov 25, 2013, and she administered another IM injection of Solumedrol.  I was so disappointed that I had to go off of the Xeljanz, but my doctor insisted. (Little did I know what the high dose steroids were doing to my lungs at this time, that is another story to come--)

When I started to feel better (due to the high dose steroids) I called Pfizer (The manufacturer of Xeljanz) and reported my “adverse reaction”. At first the woman on the phone did not want to take my “story” as an adverse reaction… she kept “correcting” me, trying to put words in my mouth that were positive about my experience with the drug. I was firm and kept repeating myself until FINALLY she started to document what I was actually saying. I had my dates, my doses, everything documented. I asked her to read back my “testimony” and she finally had it correct. A few days later I received paperwork with my “adverse reaction” as well as an apology AND an offer to pay me back for the last month of Xeljanz. The cost for that monthly supply was over 600 dollars, so I took them up on the offer. I did not sign any documentation in order to get the refund.  

As I mentioned at the beginning of my post, this was my experience, and we are all different. However, with my experience, please take the following two things with you. 

First, we are so hopeful for a new drug protocol to work, that we sometimes overlook symptoms. Xeljanz was failing me as early as August, but I chose not to see it.

Second, as with ANY drug, if you have an adverse reaction, please report it to the manufacturer. They (the manufacturer) learn from us, the consumer. Especially on a new drug such as Xeljanz.  

Blessings…

Kim

Good Days, Bad Days, Rheum Days

I had a rituximab chemo infusion today, and part of the pre med is a large dose of  IV steroid, so I am feeling very good (Steroids reduce the inflammation of RA). However, it also hypes you up, where you can't sleep and you are the energizer bunny! The infusion went very well and I tolerated the procedure better then in the past, now, comes the prayer that it will work! This 'steroid" feeling will last 24 to 48 hours if I am lucky. I will take advantage of the time.

 I posted the title above a few weeks ago on twitter, and somebody said, "that reminds me of Dr Seuss!" Yes-- it does rhyme like Seuss... today... I recalled a book by Seuss.. and dug it out of my huge collection of children's books. It is called My Many Colored Days, by Dr Seuss, copyright 1996. As I read the pages... I was able to 'connect" with the simple book in a whole different way--as an adult with Rheumatoid Arthritis and Crohns. Allow me to quote a few of the pages: All italics/ bold are from the book.

Some days are yellow -- a happy face... this is ME, before Rheum. I loved yellow and always wore yellow on rainy days, as my mom told me, it reminded people that the sun would return!
Some days of course, feel sort of brown, then I feel slow and low, low down. A sad bear depicts this picture... oh oh, Rheum has hit me, only, I  didn't know what it was...thus began my journey.
Then comes a yellow day and, Weeeeeeeeeeeeeeeeeeeeeee, I am a busy bee! Wait! Maybe I just had a 'bug" of some sort.. and I am all better now... blissful ignorance, I am not sick!
Gray Day...everything is gray. I watch. But nothing moves today. Oh oh... it hurts to move AGAIN!? What is wrong with me? I am sick AGAIN! I am in a major crohns flare and am hospitalized twice. This is when I become really sick and I am one of the lucky ones with blood work to prove my RA and Crohns. I am diagnosed with RA and Crohns. May, 2010. (my birth month, BTW)
On Purple days... I'm sad. I groan. I drag my tail, I walk alone. The realization of these diseases and what they are doing to me and my body hits me like a dinosaur (as depicted in the book).
Then come my black days. MAD and LOUD I howl, I growl at every cloud. Depression hits, Anger hits... in real life. This is MY LIFE... do I wallow in the black and purple days!? Similar to the bruises that methotrexate sub q injections give me every week? I try not too.... because the book ends....with this...
But it all turns out all right, you see. and I go back to being ME. Again, the depiction of a YELLOW stick figure. Rheum and Crohns take away a lot of things, but... it can't take away the ME inside... I am the same person... just modified to combat both of these diseases face forward.

To end....I am also a big fan of pink!  the words for pink are But when my days are happy PINK, JUMP, its great to just NOT think. These are the days, that I over due it, and pay for it later... "pay to play" as they say. I have to be extremely careful that I do not overdue tomorrow with this dose of steroids in me, as I will pay for it come Saturday or Sunday.

GOOD DAYS, BAD DAYS, RHEUM DAYS.....

What color are you today??

Psalm 23:1-4
The LORD is my shepherd; I shall not want.He makes me to lie down in green pastures;He leads me beside the still waters.He restores my soul;He leads me in the paths of righteousness For His name's sake.Yea, though I walk through the valley of the shadow of death,I will fear no evil;For You are with me; Your rod and Your staff, they comfort me.

Blessings ~ Kim

My Rituximab Journey Continues

I am now in my 11th week of Rituximab therapy for Rhuematoid Arthritis (RA). The differences I have noticed are subtle. Most noticeably is the swelling of my joints. The swelling has decreased and with that I have been able to reduce my prednisone intake by half. However, I still have a considerable amount of pain in the hips.  The spinal doctor attributes this directly to RA and not the lumbar issue. His solution is Ultrasound Guided Cortisone Injections in to both hips. This procedure will be done next week. My Rheumatologist feels that with the hip injections and another round of Rituximab infusions on July 19th and August 2nd, I may be able to reduce my prednisone intake even more and the pain will start to diminish. I am willing to give it a try. I had been told at the outset, that this therapy was not a quick fix and that results would not be seen immediately. I am still feeling the fatigue and general malaise of RA and hope that will diminish with the pain as well.

In the meantime, I have finally hooked up with a few fellow positive minded #Rheum patients who take Rituximab. We call ourselves the #RituxanRockstars a term coined by @Peaches42 when she described how Rituximab made her feel (Like a Rockstar!). Others in our "rockstar" group include @RAW4RA and @Juvey_Chick . We are in all different phases of our treatment and the support given to me alone, by all three of these ladies has been fantastic. Thank you to all of you! When I first started on this treatment, I could not find anyone who had taken it before. This made the process even scarier. Whether the treatment works or not, it is just nice to know that someone has traveled the same road.

I have discovered, the hard way, that Rituximab can cause insomnia. It helps to have a good doctor who is familiar with the different classes of medications to finally realize this was part of my lack of sleep issues. Those issues are resolving, now that we know the cause.


If your doctor and you decide to take the Rituximab journey, be sure to enroll in the Rituxan Experience Program to assist you with the co pay or co insurance. 

As with any treatment for Rheumatoid Arthritis, what works for me, may not work for you. My best advice is to go in to each treatment with a positive attitude that the treatment WILL work and you will feel and see results soon!

1 Corinthians 16:6
Perhaps I will stay with you awhile, or even spend the winter, so that you can help me on my journey, wherever I go.

Blessings... Kim

Are YOU worth it?

As many of you know, I am a big fan of social media. On twitter the conversations in the RA world often center around the poor doctor care many have received during the course of their illness. There are some days when, if I only based my opinions by what I read on twitter, I would think there are honestly no good doctors out there! I, of course, know this is not the case.  I am fortunate to have an excellent Rheumatologist, but I also come from a large family of doctors of numerous specialties. I see, personally, how the doctors in my family go off in to a room during a family function to make a call about a patient they are concerned about. I experience personally, the complete and thorough care I get from my rheumatologist. Am I worth it, YES!

Finding a good doctor can be frustrating, but I feel it is the best gift a person can give oneself, especially those of us dealing with a chronic illness. Most of my care is done through the University of Miami healthcare system. The trip to Miami from my house is 172 miles round trip. Factor in the traffic, and it can be a healthy 2 hour trip (one way). Fortunately, there are several other closer options, one of which is the Sylvester Comprehensive Cancer Center which is 92 miles round trip. This week, I have made the trip to Deerfield two times. During the next couple of weeks, I will be making the trip two to three times a week. Am I worth it? YES!

At the Pharmacy this past week, I met a man, who had undergone hip replacement with a lot of complications. He was wanting to see a new doctor, but just didn't want to drive more then 20 miles to do so. His complications had, so far, taken a year from his life, with 2 more surgeries in his future, all because he did not want to drive more then 20 miles! Is he worth the mileage to find a new doctor? YES! He will never recover that year of his life!

Finding a doctor that you "click" with can take work, serious work, networking, and time. Are YOU worth it? YES! But, you have to commit yourself to doing the work and finding the doctor that works with you and treats you as a team player. I truly believe the best way to find a doctor is by asking patients, asking other doctors, and doing a lot of research. That first visit to the "new" doctor is a job interview for that doctor to take on your care. If you don't "click", time for more research to find another doctor. All of the responsibility to finding that doctor, that will work with you, falls on your shoulders as the patient, it is a heavy burden. Are you worth it? YES! Are you worth the effort? YES! Is it exhausting? You betcha! The patient must take the responsibility of finding the doctor that works for them. We can not expect the "perfect" doctor to call us up and ask to be our doctor!

I see a lot of energy put in to complaining about doctors and how they do not listen, or they give "misinformation". While it is good to vent, and get the negative feelings out, why not spend some of that energy in finding another doctor? Start posting what you are looking for in a doctor, this will not only help you to narrow down and refine your search, but may also help others in determining what they are looking for in a doctor.  I actually posted a tweet a few weeks ago, something to the effect of... "I love my Rheum Dr because _____ and _____. There was not a single reply to that tweet, nor a single re-tweet. Let's help each other in learning to advocate by posting what we "want" in a doctor, instead of negative comments that are re-tweeted over and over again. Are YOU worth it? YES!

Pale Meadow Beauty photo by Kimberly S Byrne

Blessed be the God and Father of our Lord Jesus Christ, who has blessed us with every spiritual blessing in the heavenly places in Christ,  Ephesians 1:3

Blessings ~ Kim

Learning to Live...

A long overdue post-- I have been busy, learning a new lifestyle of Rheumatoid Arthritis and Crohns. Learning about limits, as well as discovering new hobbies, new friends, and things to keep my mind busy and my life productive. 

Medically- not a lot of changes. I am now just about 6 weeks into my Rituximab therapy. I have noticed some "subtle" changes. I still have hopes of the treatment working. My rheumatologist, as well as several I follow on Twitter, have expressed to me that after the third infusion, I will notice a difference. The third infusion can not happen until approx. 4 months after the first, due to the long half life of Rituximab. So-- that will not occur until around August. In the meantime, my Rheumatologist updated my xrays on my back and noticed the following...

"There is mild dextrotilt centered at L2.   There is no lateral subluxation.  There is no anterior or posterior listhesis.   The vertebral body heights are preserved.  There is severe disc space narrowing at L2-3 with endplate sclerosis.  There is facet disease from L3-4 through L5-S1.  There is no fracture visualized.   The soft tissues are unremarkable." 

So, this newest diagnosis bought me a ticket to a spinal doctor for a possible series of epidurals, as well as a stint in physical therapy. The physical therapy is actually a positive, as I picked a place with a heated pool. I start next week and am looking forward to learning some exercises that I can continue in our own pool. 

Back to the topic of my blog... "Learning to Live..." That is exactly what I am trying to do. I have returned to the comfortable fold of several of my close dog friends, and have met a few new friends along the way. While, I can't train Annie, I can tag along with Tom, and take photos of her and the other dogs tracking. I have enjoyed renewing the friendships and 'talking" dogs. I have also been volunteering with the chimps at Lion Country Safari through Chimpanzoo, a program supported by The Jane Goodall Institute . I also just volunteered to be on the news and events committee in our neighborhood, so I am hoping that will give me some extra diversion in my new lifestyle. Sadly, I have not been able to get to see my seaturtles as much as I would like. This is mostly due to the distance of the drive. However, I do have plans next week to make a special trip to meet the newest "patient", Betsy, at Loggerhead Marinelife.

While making these changes in "learning to live", I have come across the realization that, I do not want my diagnosis to "all consume" my life and become a 24/7 job of teaching people awareness, and/or becoming the walking 'billboard" of RA and Crohns. My "support" group of people, has become remarkably absent of those whom have been diagnosed with autoimmune disease, and truthfully, I think this is healthier for me. My friends are diverse, some living with chronic illness but not allowing it to define them, and some living with what life has to offer. All of the friends I surround myself are positive in nature, and a fun loving group. Our similarities tend to include a love of dogs, animals, nature, conservation, and of course photography.  This "changeover" in my support system has been a healthy learning experience for me. I see others, "all consumed", living and breathing, RA, Crohns, and Chronic illness, while the illness is there, and I am not advocating ignoring it, I am advocating to broaden your horizons, and to find meaning or purpose in activities and people that are not necessarily in the same medical situation as you. 

The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. John 10:10

Blessings ~ Kim 




Pictured is Max, my BFL husband's tracking dog, working to find the glove!

2nd Rituximab Infusion

My second infusion was April 30th. The infusion was uneventful! My rheum doctor had increased my pre medications, so I did not experience a reaction. I did, however, experience some vein burning sensation. On Day 2 after my infusion, my breathing difficulties started to emerge. I took my inhalers prescribed by my Rheum doctor and am currently sleeping with the humidifier or hanging out in the bedroom with the humidifier if I feel shortness of breath. I am weak, and fatigued, but that is to be expected from the infusion.

Unfortunately, my RA pain levels are the same. The pain is the most severe in the morning (take your breath away), and is a constant all day. It is mostly in my hips, and low back, which makes bending, twisting, sitting to standing, a difficult chore. I am learning to adapt my surroundings and environment more and more to make things accessible to my wants and needs.

I was able to do a short stint of observing the Chimps today at Lion Country Safari .  

And this is our confidence, that if we pray according to His will, He will hear us, and give us what we ask for, because our desires are in agreement with His thoughts for us. (1 John 5:14-15)

Blessings ~ Kim

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

We Are Not in Control of the Disease

This week, an affirmation was given to me by a friend... "We are not in control of the disease, we are only in control of how we react to it." I am a DEEP thinker, and when someone gives me an affirmation like this, I will ponder it, turning it around over and over in my head, specifically identifying how it relates to me.

I am a type A--- "Take Control" type of person, jump in with two feet, I have always been this way, specifically in my job as a Special Education Teacher. I am also very "goal oriented" and if the goal is not met to my standards, it means I failed. After all, in Special Education, I am a bugger about goals being measurable, obtainable, and appropriate for the population of students I teach. But, you know what? The goals I have been setting for myself lately have not always been obtainable or appropriate for me. Which, going back to my goal writing for Individual Education Plans, would have meant "failing" to meet a goal.  In my students, I would modify the goal. Why was I not modifying MY goals? Because, I was too busy trying to control Rheumatoid Autoimmune Disease. (RAD) It was time to really start thinking and on how I could control my reactions to the disease. So, in order to control my reactions, I would need to modify my OWN goals, just as I would my student's.

Yesterday, was St Patrick's Day, being a Byrne, it is a very festive day for us. For the past several years, we have attended a large parade in a local city. My niece happens to be the Chief of the Fire Department where this parade is held. She marches in the parade every year with her brothers and sisters of the Fire Department. Fire Departments from all over the United States and the World come to march in the parade. This particular year, due to numerous commitments, I was the only one able to attend the parade. I really did not want to miss it, and I took the attitude of "I AM GOING- I WILL PAY TO PLAY" a common phrase we use in the RAD community. My niece, asked me to bring the wheelchair... "No way was I bringing the wheelchair!" She reminded me of the walking involved... nope, I was in control, I had a goal of attending that parade on FOOT (and paying for it later with pain). But wait a minute... was I controlling my reaction to RAD? Was I setting an appropriate and obtainable goal for myself? The answer was a simple "no". I then modified the goal, I would attend the parade, in the wheelchair and I would enjoy it, without paying for it!

Flash forward to the parade- it was awesome, the biggest it has ever been, and the bagpipers (my personal favorite) and fire trucks were incredible. And, apparently, a woman in a wheelchair, with a nice camera, is memorable!! And, by that I mean, the Ambulance Victoria Pipe and Drums from Australia  sought me out and gave me their facebook page, requesting that I send photos, as well as The Chairman of the Dublin Fire Brigade Pipe Band asking for pictures as well.

I think I am on the right Track (pun intended!) As our black lab, Annie, earned her Tracking Dog title with my husband as her handler this morning in Orlando! She is now known as Stoneridge Can't Miss JH TD, Congratulations to my wonderful love giver Tom, and support/service dog Annie!

And remember that affirmation.....
"We are not in control of the disease, we are only in control of how we react to it."

For which of you, desiring to build a tower, does not first sit down and count the cost, whether he has enough to complete it? Luke 14:28

Blessings ~ Kim

Rheumatoid Autoimmune is a DISEASE---

I am changing up my blog a little--- because--- I want to, and I can! No more day counting... (:

Yes, I have been MIA for awhile.. but, I am back to "Kim". I am also still fighting the Rheumatoid Autoimmune Disease  (RAD) battle, and what it is doing to my body.  To catch you up a little... Rheum doc said my disease is out of control, and increased prednisone, something I did not want to do, but it is a fact of life.... and for now, I am taking advantage of the pred to catch up on things I have let go. Don't get me wrong, I am still in pain, almost constantly, but it is duller and I can function, I walk with a limp and do not get out of a chair fast! And God Bless those stores that have the electric carts! I have started on Orencia sub q weekly, second dose tomorrow and continue on the methotrexate sub q weekly.

Chronic Illness is a tough one to explain to people who have not experienced it. Frankly, I was one of those people who did not understand the ramifications of a chronic illness disease until about 3 years ago, before I started to exhibit signs of RAD. Having said that--- Chronic illnesses or diseases such as Cancer, Cardiac, and Tuberculosis, get recognition through foundations, fundraising walks, and charity events. Unfortunately,  many people are under the impression that RAD is "just arthritis". And, the Arthritis Foundation supports us. Hmmm, not true, after several unanswered phone calls to my local Arthritis Foundation, they finally answered and point blank told me... "You know RAD is so different, we do not have a support group for you, we have no resources for you, but please buy our magazine!"

RAD has  no cure  and actually affects the entire body in many different ways, depending on whose body it decides to occupy. RAD can get in to your GI system, your heart, your liver, your kidneys, your voice box or larnyx, your lungs, your eyes, the point is... it is "not just the joints". The list goes on, I am sure I left something off!  So humor me...since RAD is a disease, why do people continually ignore that fact and simply think that if all medications are stopped, or not taken, you will "feel better"... and the go "natural/holistic" approach advice is given almost daily. Would a person with Cancer, Heart Disease, or Tuberculosis be given such advice? Would the "physical pain" of these diseases be ignored by not only friends, family-- but also (egads) a lot of doctors! NO!  But... if you are experiencing the RAD disease....this is exactly what happens. On a daily basis--- I am advised of a holistic approach, remove the medication approach, and the pain... "oh it can't be "that bad"! Live it with me for a day or two, please!--- fortunately for me, I have a very compassionate husband, who understands the pain, and questions me daily on it. I also have a very compassionate Rheum Doc, who actually told me the other day, that my pain tolerance was the highest she had ever seen! (As she is giving me a cortizone shot in my hip and I am not flinching.) I also make a true effort to surround myself with positive people.

Now, do not get me wrong, I *DO* think there are holistic and natural "treatments" that can assist with the disease of RAD. Epsom salt baths have helped me the past two days to dull the pain, however, it means I struggle out of bed, in to a bath! I am learning meditation and relaxation techniques. I am juicing to assist with nutrition.  And probably the most important thing...I am discovering the natural beauty of Florida through photography. A hobby I have always enjoyed, but I am taking to the next level. I am finding that when I am looking at nature and within nature, I actually "forget" RAD... and focus on the wildlife or flora that I am trying to capture via a photo. I then put these photos on a slideshow on my Ipad, set some music to it, and on those bad pain days...I watch the photos and listen to the music as a relaxation technique.

Bottom line, RAD is a disease and needs to be recognized as such by not only the people who surround you, The RAD sufferer, but the medical community as well.  And... I might add... the same goes for Menieres Disease  a disease also with no cure that I did not know about myself.... until I met a friend afflicted with it. It too, is unrecognized by many in the public and medical community and deserves the recognition for the disease that it is....

To read more about how nature has and will help me personally--- take the time to read an excellent article written by Rick Wood

Hiking Back to Normal

"Carry each other's burdens, and in this way you will fulfill the law of Christ."
Galatians 6:2  Blessings-- and compassion--- Kim