My 33rd Year of Life!

I was asked last night how old I was, to which I needed to pause and think about. A family member answered for me before I came to the correct number in my head. At least I didn't say the wrong number and took the time to think about it this time. I turn thirty four on Wed. October 1st. My journey has seen many ups and downs, and been full of love and compassion throughout the last year. This week marks the end of my thirty third year of life on this beautiful planet and the beginning of my thirty fourth. It also marks the end of one year of trying new biologic medications to treat my rheumatoid arthritis, with no positive results thus far.  


One year ago this week I found out I would not be able to receive my Remicade infusions that had been what I considered my lifeline for the last two and a half years. It helped my energy levels, slowed the progression of damage from the rheumatoid arthritis, which in turn lowered my pain levels, which in turn helped me sleep better, allowing me to live a somewhat 'normal' life. My secondary disease, fibromyalgia, was better controlled, because my rheumatoid arthritis was better controlled. It's a domino effect. And when reversed or stopped, life for someone living with autoimmune disease can be pretty great!


Not being able to receive my infusions here in Sioux Falls, at the hospital my doctor practiced at meant I had to change medications, without any other choice then to go off of biologics while waiting to get in with a new doctor, or flying back to Colorado. The latter two didn't feel doable at the time. So I switched biologic medications. My unending optimism I get from my wonderful mother, gave me the tools I needed to wait it out for three months while giving the medication the proper window to 'work'. It did not, so in January I switched to yet another biologic medication, with the same optimism, believing it would work. Of course it would. Then in May I switched medications yet again. And now my insurance will not cover the medication I'm trying and through my optimism feel may actually of been starting to 'work' towards the end of July. I went to get my third infusion of Simponi Aria a few weeks ago, knowing I didn't have insurance coverage for the drug, but opting to pay cash. This did not work, as I needed $3,000.00 more then the already high price I had planned on paying.


When one disease is not being effectively treated, in many people, and in me, the secondary disease is caused to flare. This has been the case with my fibromyalgia. The domino effect in motion. One of the many symptoms of fibromyalgia is essentially memory loss and cognitive dysfunction. My memory loss and cognitive dysfunction have reached a level that has myself and my doctors wondering if there is another cause. It causes me to forget what age I am, show up for appointments on the wrong day, several times in a row, drop Gavin off at hockey practice at the wrong time and forget a whole gamut of things that affect everyone in my family. Frustrating for them to say the least. My positive spin on it is that memory loss allows me to live in the present. A desire and mission I've been on since my interest in Buddhism began. The ability to be present is truly a gift, so I am trying to see the gift in memory loss and cognitive dysfunction. I began seeing a neurologist last week to eliminate other causes. At the end of it all, it may just be part of having active fibromyalgia, which is affected by not having my rheumatoid arthritis affectively treated.


That is my thirty third year of life in a nutshell. Everything else, although wonderful, does revolve around my rheumatoid arthritis and fibromyalgia. No matter how hard we try to get away from that fact, at the end of the day it is my truth. In that I have learned how to sit in the present, and that is the gift of my thirty third year of life!

The Surgical Procedure

In six days I will drive to the Sioux Falls Specialty Hospital, check-in, go to a pre-op room and put on a lovely hospital gown accessorized with a beautiful hair net and comfy no-slip socks. I will get my blood pressure and pulse taken. The nurse will start my IV. We will go through the pre-op checklist of questions. Next, my doctor will come say hello, ask if I'm ready to do this. I will say yes, ready as ever. My doctor will leave, letting me know he will see me soon back in the surgical room. Now is the point that I will ask to go to the bathroom one more time, (my only fear is that I will pee on the operating table...silly, I know!)


My nurse will ask if I'm ready, letting me know it's time to walk back, or sometimes wheeled, to surgery. I will walk through double doors as they automatically open. My body stiffens as the cold air surrounds me. I will say my hello, and thank you greetings as we wind through the large hallways into the room of the day...that is, my room of the day. I'll exchange more greetings as a step stool is placed in front of me to be utilized for climbing up onto the cold metal surgical table. Brr. Yes, it is cold. More introductions are made as my team for the day attempts to put me at ease. I will then say thank you to each that I have not already. This part is important to me. I want to personally say thank you to those caring for me. The services they provide are important and I appreciate their hard work and dedication to taking care of patients like me. Yet, I'm not certain they hear thank you enough. It is my thing to do with each of my surgical and non-surgical procedures.


Soon, the order of operations for the given procedure will be explained to me by a smiley staff member. I confirm my birthday and name and for one last time, what procedure I am having today.  Next, they let me know that they will be giving me meds through the IV to make me sleepy. Next thing you know I am waking up in the recovery room, groggy, trying to remember where I am and why I am here. It takes a while to fully come to.


I am seasoned in the area of surgery. I know it well. In six days I will be going through the process I just described for the 15th time for my 15th surgery. It will be the 10th surgery that is related to damage my body has come to know as a result of having rheumatoid arthritis and osteoarthritis, of having high levels of inflammation for extended periods of time. The one thing that will be different with this surgery is that I should feel pain relieve and get results right away, versus waiting two years to have nerves grow back, or overcoming post-op therapy and obstacles that can stand between you and the results you desire.


I no longer get nervous before surgery. It's like so many things in life...practice makes perfect! So next Tuesday I will practice being a patient as I have the ablation of nerves in my neck performed. I always look forward to any small step in making living with rheumatoid arthritis and fibromyalgia more tolerable. I look forward to Tuesday!

Do you have a team?!

A family member of mine that also has rheumatoid arthritis and I were joking about our plight the other day. We joked that while 'other' doctors we see (orthopedic, chiropractic, pain specialists) give us a range of treatments that help the pain or fix secondary issues caused by our RA, our rheumatologist state that this is your life, this is how you'll always feel, here are your scripts! LoL I have to laugh because although that sounds sarcastic there is a lot of truth to it! I saw my rheumatologist yesterday, and in many different ways was retold the fact that this is how I'll always feel and he doesn't expect it to get much better.
 
My rheumatologist told me yesterday that he doesn't expect me to ever feel much better then I do now. He doesn't expect me to be able to ever work a normal job like many people do. I was told that we need to hold off as long as possible on me getting my IV port because I will need it the rest of my life, (my veins have started to scar and several are not producing blood...which makes giving me IVs and drawing blood difficult). And I was told not to put too much faith in each surgery or procedure I have because I will only get so much relief with each one. It may sound negative, but it is the truth, and I do need to know the truth, the reality of life with rheumatoid arthritis and fibromyalgia


My 'other' doctors seem to be there to make me feel better. They treat isolated joint and muscle groups to give me isolated relief, one by one. And I appreciate their effort, their positive, we can make a difference attitude. I need this too.


In truth, we need both. We need the realist. We need the doctor that doesn't sugar coat it and isn't going to try to simply make us feel better with their words. Much like in life we need those that will be honest. We need those that will tell us the hard unsettling truth. They tell us that the road ahead is going to be tough, that there will be ups and downs but that we have what it take to make the journey. In addition we need those doctors that will help make the journey a little bit easier. We need the surgeries and procedures that will take away a little pain or improve our function. We need the soft tissue work and relief of injections, acupuncture and chiropractic care. Just as we need those that will lend us a hand, give us a hug and be our friends as we travel the ups and downs of this great journey called life.


I had a doctor, my chiropractor, that I met in 2011 give me the best advice I've received in all of my years of being treated for RA and Fibromyalgia. He asked if I had a team in place. I said, uh, no. He said you need a team. Your team should ideally consist of a rheumatologist, a physical therapist, an occupational therapist, a masseuse, a chiropractor, an orthopedic doctor, a pain specialist and a psychologist. And possibly a nutritionist and acupuncturist. Best advice ever! That translates into life. We all need several different people on our team in this life. Each one of us needs people from different walks of life on that team, just as I need medical professionals from many different fields.


Our teams helps us get through the real stuff, the tough stuff, and through the ups and downs of this great journey called life! And they help us celebrate the good stuff! Do you have your team in place?!


~Jess

Medial Branch Block

During the past five months I've been averaging five medical appointments per week to treat both my rheumatoid arthritis and fibromyalgia, but specifically targeting my neck and shoulder. At first it was a debate of which was the source and which cam first, the neck or shoulder issue. Kind of like the chicken and egg debate!


My doctors and I learned two years ago, in 2012, that my arthritis had begun to affect my cervical and lumbar spine. At the time I learned some better habits for sitting, sleeping and standing. I started physical therapy. As my RA did slightly better, my neck pain followed.


In January of 2014, my neck started flaring, with terrible pain and inflammation. As with the chicken and the egg debate, quite often their is a debate as to which condition each symptom is currently coming from. You'd think it'd be simple, when in reality it is quite complicated.


I've tried chiropractic care, soft tissue work, acupuncture, massage, trigger point injections and physical therapy. A few treatments gave me short lived relief - a day max . Nothing took the pain away completely.


Today, I had a Medial Branch 'test' Block procedure on C3, C4, C7 and T1 at Sioux Falls Specialty Hospital. This test is used as a diagnostic test to determine specifically which facet joints the pain is coming from. I now have to keep tract of my pain level for the next twelve hours, as to see how well and how long the block successfully treats my pain. So far, it's doing quite well! It's amazing to not feel the constant sharp and throbbing pain throughout my neck. I am very grateful for that tonight. I still have very sore muscles in my neck - but that is easier to treat then the pain from joint destruction. I can live with that;)
 
If the next test block proves to be a success, then I will have Radiofrequency Ablation of the nerves at the above facet joints (C3, C4, C7, and T1).

Peripheral Neuropathy - A Complication of Rheumatoid Arthritis

I went to see my hand surgeon and specialist last week at Orthopedic Institute. I had two surgeries a little over two years ago to reposition my ulnar nerves in the elbows and to release the median nerve in my wrist of entrapment. Tingling and numbness in my fingers and hands was the symptom these surgeries was to correct, or at least improve. There were no guarantees. The nerves did not entirely grow back, but I had vast improvement for about a year! It was pure bliss to be able to use my hands without the recurrence of the tingling and numbness that accompanied most tasks required my hands.


At the time of my surgery I was also having tingling in my face and feet. I was tested for MS, which thankfully appeared to be a negative through MRI scans, nerve studies and muscle testing. The tingling persisted, and I grew tired of trying to find the cause. I chalked it up to be either a side effect of RA inflammation, or a symptom of Fibro - both quite possible.


About six months ago my hands began to constantly tingle - from morning to night, every waking hour my hands hand a pins and needles tingling feel to them. It can get worse with use, but never goes away completely. My hand surgeon is a snowbird and home in SD during the summer. I thought it couldn't hurt to go see him and see what he thought about the constant tingling.


He ordered a new nerve study, to include my neck because of the neck and shoulder pain and inflammation I've had since January, also for six months. Results were good. No pinched nerves, no new nerve damage. No exact cause was determined. He suspects and diagnosed me with peripheral neuropathy. It can be a complication, or secondary disease to rheumatoid arthritis. To me it is simply giving words to the symptoms. I'm already taking the meds used to treat peripheral neuropathy (for fibromyalgia).


I also was enlightened during my appointment to the reasons that my hands cramp up and 'quite working' after a short period of use. The wasting of and decreased use of my muscles in the hand, do to the cycles of pain and inflammation from the rheumatoid, cause them to cramp up and quit working. It is difficult for those of us with this disease to maintain or gain muscle/strength. We tend to loose more muscle then we gain - largely due to our decrease activity level from the cycles of the disease activity. He suggested exercise in the warm therapy pool - which I already do - so I will continue the use of it and tingle on for now!

Be well! Namaste.

Jess

I find this quote to be inspiring! While helpful for any of us, I find it especially relevant to living with the autoimmune diseases that I have, RA & Fibro.

I've been thinking of my very long list of things I'd like to and need to accomplish. We all have these lists. Our lives get busy and those items gets put on the back burner. For me, the list is born of the what I need to do, and what I'd like to do, but in both cases I don't feel well enough to do. Or the required joints are not functioning properly - without pain. I'm beginning to realize that many of those items are part of the life I had planned.

I do well with letting go of the big things I had planned, leading me to living the life that is waiting for me. Moving back to South Dakota to be near my parents for support. Living at my parents house so they can help fill the void, the need, that arises from me being unable to do many things with my hands for my kids, or having the energy to 'participate' in my family. Both those things are very different then what I had planned for my life, but both were waiting for me with an enormous amount of love and blessings. When I was able to let go of my big plan, some pretty amazing blessing came to my family.

I'm struggling with the little things that I had planned for my life though, and to be honest I'm not exactly sure what life has waiting for me. I am an artist. But, I am now an artist that cannot create with my hands. Ideas are constantly flowing through my head. But I'm not able to put them into action.

I know logically that I have to create in ways that don't require small motor movement of the hand. No graphic design. No pottery. No painting. No drawing. 

But, yet I have plans and ideas that go on the list for when I feel well enough. For when my hands work again. The items don't seem to ever come off my list; they all require my hands creating.

'When I feel better...', doesn't seem to be happening.

While I know that I must be willing to let go of the life I had planned, so as to have the life that is waiting for me, it is difficult. It feels like giving up. So I'm still sitting here, waiting for a good compromise between the life I have planned and the life waiting for me!

I'm not quite ready to give up on being the artist my soul knows I am...we just need to convince my body that it can still create;)

It takes courage, strength and faith to let go of your plans, to go into the future knowing that there is a life waiting for you. And it takes patience while you work to let go of your plans, waiting to see what the life waiting for you is.

I leave you with my favorite quote regarding patience, in case like me you are working on letting go, waiting for a compromise, or you are waiting to see what awaits you...

"Patience is not about how long you can wait,

but how well you behave while you're waiting."

- Buddhist Boot Camp

Teeth & RA (and other autoimmune diseases)

It's been said that RA affects our teeth. I have been in conversations with other autoimmune patients regarding our teeth going to shit after beginning the journey of living with RA and other autoimmune diseases.  Yes, it has been my experience,  my teeth have indeed gone to shit since I began treatment for my RA and Fibromyalgia. I've lost three teeth entirely - reducing my chewing capacity to 75% of the average person's ability.

After my oral surgery in November my teeth were looking good.  No more decay was seen on x-rays or by exam. Given my decent diet and dental hygiene habits it was nice to finally have a good report. Now, less then 6 months later I have another tooth that is decayed all the way through, down to the bone. That's how I lost one tooth just 6 months ago.

It is absolutely crazy to me, that in less then 6 months I have another tooth go from healthy to being very decayed. Along with that new 'bad tooth', two more cavities were found. All of which I did not have 6 months ago. 

I've been on oral steroids the entire time, which I know historically got me to the diagnosis of osteoprina (a pre-osteoporosis diagnosis.) I had an informative conversation with my dentist.  I learned that it's not having RA or other diseases that cause teeth to go to shit, but rather side effects from medications used to treat the diseases. 

Chemo and prednisone in particular are bad ones. Two of which I've spent a good deal of time taking.  They almost all give people, and me a dry mouth. Saliva protects teeth. Lack of saliva compounded with the demineralization and porous state of bones from steroids cause the teeth of people with RA and other autoimmune diseases to go to shit!

RA is not directly to blame - rather indirectly to blame.  I'm happy I now know the difference:)