What it means to have No Spoons : Warning Explicit Kitten

Usually despite having arthritis and celiac I am chipper, happy, loveable. I maybe a little snippy when I hurt, or I'm tired but in general I'm happy and I appologise. Today was different, Today I had no spoons, and I had no reason to pretend I had spoons. I woke up simply spoonless. A rare occurrence but it happens to all of us in chronic pain and today I made no bones about it I did not have spoons. This means I woke up over everything 100% done with: pain, exhaustion, BS, snow, cold weather, 8-4 work, etc. Why? Probably exams, too much snow, work, pain, lack of exercise, and general stress. So bottom line NO SPOONS!

Because I have no spoons I feel its time to explain it in a comical manner so I can laugh at how piss poor I feel about the day. Atleast then my spoonlessness will have been amusing for me and others so onto the explanation of what it means to have no spoons.

What is spoonless? Well if you want the g-rated original version I recommend you go here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

For the short version of no spoons I basically woke up feeling like this:


Now if you'd like a more detailed hour by hour action here we go:

I woke up like this:


Then I went to look at the weather and went like this:


Then I couldn't figure out what was wrong and I felt like:




Then I realized my bones felt like:



Then I sat in traffic and was like:


Then I had to deal with some BS with my doctor messing up my script and I found out our insurance/a medical company messed up some payments I was all like:



Then the day got really busy and I was like:



Then I was like:





Then people were asking me about my spoons and I was like:

 

Then the day ended and I was like:



Now I'm at home relieved still with no spoons but planning to do Pilates anyway feeling like:



Now that I've gotten all that out of my system my therapy for no spoons is complete. I hope my annoyance with the day, chronic illness, snow, etc has at-least amused someone other than myself. If I cant be happy because I'm a grump at-least I can turn it into something funny I can relate to relieving some stress.

Captain Angry Bones

Marine Corps Marathon Dilema

My closest friends know that the Marine Corps Marathon has become the bane of my existence. It has become the race that has stood back and taunted me for years a finger tips length from my grasp. The race that haunts my soul.

The start of this story was in 2007 when after running a 5k I chose to try an endurance event. I chose to run the 2008 Marine Corps Marathon. My rheumatologist turned around and simply told me no, absolutely not with my condition. Instead of being discouraged I came back a month later and said that you said no marathons nothing about a century ride. I went on to do the 2008 El Tour de Tucson a 109 mile bike race. Determined I went on to do the 2009 Nation's triathlon. In 2010 I was given permission to do a half marathon, 2012 after coming back from a broken leg I finished a half ironman triathlon. Finally 2013 was my year my general practitioner and rheumatologist agreed to let me train for a marathon.

My 2013 spring season was strong despite my knee problems, and infection I ran some of the best times I'd ever seen. I pushed through pain, and illness gaining time, distance, and strength. When the summer came I began the build towards the MCM with a ticket to get in from the 17.75k. My hips started giving me problems as my knees cleaned out but my hips were different. I went through a number of oral treatments, and injections. I still hoped to run walk the marathon despite my inability to run more than 4 miles at two weeks out from the race. Ten days out my dreams were shattered my doctor pulled me from a race for the first time ever. I was put on five weeks of no running or impact exercise.

2014 Started with a new diagnosis and new treatment, but realities that my hips are still not right. I decided to try yet again to get into the MCM figuring I was strong enough this would be my year. Ultimately the MCM would be the first of three marathons I would do over nine months before hanging up my shoes and focusing on the half a distance that is much easier on my arthritic joints. Instead during the lottery I was thwarted again not selected.

This put me in a dilemma because the MCM with its history of taunting me is a must do race. It is in my running grounds, and I hate to be thwarted. It is also perfect timing with my scheduled races for the rest of the fall, and then a short down spell before the Goofy Challenge in January. I looked at other races and 1. They do not interest me, 2. The timing doesn't work as well, and 3. I have vowed to let this distance go after Boston next spring. This means the time is now if I'm going to do this race.

Charity options aren't an option for me since I've dedicated my fundraising to ANRF. Where this leaves me is waiting and trying to get a transfer slot. Its not an awesome spot to be in but I know the other two races I'm considering shouldn't sell out quickly giving me plenty of opportunity to buy in last minute if this plan doesn't work out. So keep your fingers crossed I'm hoping despite my history with the MCM I will be crossing the finish line come late October banishing years of bad luck and fulfilling a bucket list item of my races to complete. Keep your fingers crossed for me that my joints hold and I find a bib!


Captain Angry Bones

March 19th Date with Dr Pokey Joints: Facing the Good, the Bad, and the Ugly.

This morning was my regularly scheduled bimonthly session with Dr. Pokey Joints. These appointments follow a simple regime of check the joints, pressure points, review labs, films, and symptoms. They are done every two months to try to stay ahead of my ever moving disease. Today there was good news, there was great news, there was bad news, and there was ugly news.

The good news is I had a really great dialog with my doctor, and we covered everything on my list. The list was pretty extensive this morning covering all the good things in my life and the not so good ones. I tend to like my appointments first thing in the morning because I feel you get a little more time with Dr. Pokey Joints. One thing that really helps me in these exams is being prepared by bringing a list of answers to his questions and a list of my own questions or dialog about what is going on in my body.

Today I went in with a huge good list! I just started remicade two months ago. Remicade is a TnF inhibitor given by infusion (I will do a blog about this at a later date). I feel the best I have felt in 18-24 months not being on steroids! I had spent most of last year and the year prior on steroids to function since my treatments were not working their finest. This feeling pretty deccent is something to celebrate! I’m not saying I feel like a normal person but what I am saying is that my symptoms are manageable and I can and do feel pretty good most days. I am also not flaring and throwing fevers non stop and my energy levels are pretty good. In addition to that my eye issues, my morning stiffness, and my generalized pain/swelling have gone down tremendously thanks to this drug!

The great news is that we confirmed remicade is working! I also got the all clear that my fibromyalgia is in check! We pulled one of my anti-arthritic drugs an antimalarial called plaquenil because it is not needed on the new meds. It was also causing my psoriasis to act up on my feet after infusions. This is awesome news because all of these drugs are hard on the liver. More good news is we can drop my MTX from 7 to 6 and possibly to 5 for the summer! MTX as we spoke about in the last blog is a chemotherapy drug called methotrexate. It gives me horrible side effects and its not good for the liver. My doctor is confident with warmer more stable weather coming and the remicade building in my system I am going to feel even better after my next infusion!

Despite the good news there is bad news I was scheduled for another bone density scan since I haven’t had one in 18 months. The bone density is important because I have bad osteopenia. Osteopenia is low bone density, and mine is just a hair off of being full osteoporosis. The particularly bad news is I have been eating a lot of steroids which does a lot of damage to bone density. Mine was already low due to childhood malnutrition from undiagnosed celiac. Due to permanent malabsorbtion issues, and possible pancreatic damage my bone density is something of great worry to my doctors. So Saturday we get to see how far the rabbit hole has gone and we may need to make some difficult decisions if the situation has gotten worse.

Now for the ugly news, my hips have not responded on the level that the rest have to remicade . My hips have been a major issue for me since last July. I have a combination of bursitis, arthritis, and tendonitis here. Last August a set of shots was placed into both hips at the same appointment because they were so inflamed I shouldn’t have been able to walk, yet I’d run 7 miles crying on them the day before like an idiot. The shots helped but not enough so I was pulled down from running for over a month and missed out on the Marine Corps Marathon. I was basically told no impact during that time leaving me to swimming and pilates. Well I’ve been running again but the hips still aren’t right and recently they’ve started to regress again. Dr. Pokey Joints agreed my hips are of a big concern so we are running X-rays. If they still aren’t right and the bones are clean in 2 months we’ll run an MRI. For now I’m allowed to continue running as long as I continue taking care of them the way I have been with extra stretching, Epsom salt baths, volteran, and strength training. I did however need another steroid shot today in the right hip, and was told if the left continues to call and come in for that one in 2 weeks. Right now it is unknown what is damaged in my hips, and what will need to be done. There is a chance more remicade may solve it, or it may be just permanent damage from my disease. In May after my next remicade and x-rays, we will decide if I will run or run/walk my first marathon. This is something that makes me sad but I know my doctor will do everything in his power to keep me running and is trying to find out how hungry Arthur was in its angry phase last year and how much of my bones and soft tissues it has eaten. Fingers crossed we are just dealing with a lot of soft tissue residual damage which could take a while to heal, but my gut tells me its more than that since my right hip has been off just slightly for some time now in films and this issue has lasted me longer than any other in the past.

Today was more eventful than usual at my appointment. My bones got manipulated a lot and they hurt because of that. However I feel like we are making good decisions in my care, and we are making really great head way with my new treatment. I am happy to be running, and have the tools being handed to me to make smart decisions to protect that for my future. I am thankful for feeling pretty good these days, and I’m ready to face whatever is coming my way.


Captain Angry Bones

Methotrexate Monday AKA Milkshake Monday

Mondays are my rest days from training and also my methotrexate days. I combine the two because methotrexate is the drug we love to hate in the autoimmune arthritis world. Its a great drug in that it helps control our disease but like any chemotherapy drug it has awful side effects.

Methotrexate (MTX) is an antifolate chemotherapy drug developed in 1947 for the treatment of acute lymphoblastic leukemia. The antifolate mechanism of the drug shuts down the fast replication of the cancer cells because they must have folate for the cells to synthesize their DNA. By inhibiting this replication the cancer cells cant continue to multiply at the fast rate they were and they die off. The problem with this is the chemotherapy affects other cells that replicate quickly by shutting down their DNA replication as well. This leads to hair loss, mouth ulcers and other nasty side effects. The drug is also hard on the liver since the liver metabolizes the drug and can cause damage to the liver over time. Despite the side effects and potential liver damage MTX is still used widely today for a number of cancers.

MTX low dose therapy was approved by the FDA in 1988 to treat rheumatoid arthritis, and then went on to treat many other autoimmune arthritis conditions. It is given either orally or by injection at home once a week. Dosage varies by the patient. Unlike cancer patients those with autoimmune disorders are allowed to take a folate supplement during the days of the week they are not taking methotrexate which inhibits some of the nasty side effects of hair loss, ulcers, etc. The methotrexate use in autoimmune disease inhibits the immune system from replicating itself causing the patient to be immune suppressed. The reason this is done is because autoimmune patients the immune system is attacking the person's own body.

Despite the fact that MTX is effective and as an arthritis patient I am given plenty of folate to take with it I like many patients get a lot of nasty symptoms on the drug. The most pleasant of which is nausea. Many Monday nights the stomach upset builds to a point where food is completely unappealing yet hunger makes the issue worse. My awesome husband bought me a magic bullet for when things are particularly awful so I can make milkshakes. For some odd reason milkshakes appeal to me when nothing else will. The advantage of making them at home is that I can shove spinach, fruit, and protein powder in making my milkshake somewhat less unhealthy tricking my body into getting some nutrients. I also get what is known as "brain fog" this means I am about as sharp as a box of rocks on Mondays. There is also a lot of fatigue with this drug and that certainly doesn't help mental acuity. I've also like a rocket scientist that has been hit on the head with a frying pan attempted to train on MTX days with disastrous results. This is why my MTX day was moved from Sunday to Monday. The MTX nausea is not your friend running, and you sweat like your a waterfall. This is why MTX day is my rest day.

Despite its awful side effect MTX is an awesome drug for autoimmune arthritics. It is generally well tolerated meaning the symptoms once a week are combated with excellent results in keeping the disease at bay. In my situation it combines with my TnF inhibitor Remicade making it more effective allowing me less inflammation, less pain, and preventing joint damage over time. Without MTX the remicade is less effective and my body is more likely to attack the remicade rendering it useless. I gladly trade one day a week of being sleepy and uninterested in food for the suppression of my disease and the pain it brings.

 Currently I take a relatively high dose orally once a week, but shots reduce the symptoms. My tolerance hasn't improved with the start of remicade so my next appointment I am going to request injections. The injections often eliminate the nausea that accompanies the drug. We hope this helps me a little, since every little bit makes the journey easier.

Overall though I harp on how horrible MTX is it is a really wonderful drug. It has saved thousands of lives of cancer and autoimmune patients. It has certainly helped protect me from a lot of joint damage over the years. I am thankful that I can trade everyday with a lot of discomfort for one day of annoying icks. Without this drug I certainly would not be running today, and that in itself makes me very grateful that we have this option in our tool box against arthritis.

Captain Angry Bones

A Tale of Two Toe Nails

Welcome to my blog, I am here to raise awareness, funds and advocacy for autoimmune arthritis. My journey took almost eight years to get a conclusive diagnosis, which is not unusual for these diseases. One of the most common problems in the autoimmune arthritic community is the amount of grey area between these diseases which leads to often evolving diagnosis over the years until a final one can be made. This issue of finding the right diagnosis is one reason why it is important for us as patients and our doctors to work together and speak up to help others get diagnosed faster.

My journey started at the age of 25 when I went to an orthopedic surgeon due to back and hip pain. I had seen this surgeon before and they had recommended physical therapy (PT) for the spondylosis in the past. It had been a few years, but I expected the same outcome very painful PT for my back to help my muscles support my spine. What actually occurred was a shock to me and the surgeon who took my x-rays; I was diagnosed as an arthritic. I remember the moment very poignantly as my doctor stood there looking at my x-ray she shook her head and said "What is that? That's not supposed to be there. The lumbar spine shouldn't show degeneration until the 80s and rheumatoid arthritis shouldn't start there." My spine in lumbar vertebrae 1-3 had what appeared to be rheumatoid arthritis nodules and degeneration. My doctor ran a series of tests for rheumatoid arthritis (RA) which came up negative, and put me on a NSAID. She was very pregnant and told me if the back pain did not clear in 6 months after she returned from maternity leave she'd send me to a rheumatologist, and if it worsened I should take myself. Well you can guess what happened it did not get better so at her advise I went to a rheumatologist.I thought that rabbit hole would be simple new doctor and fixed with medicine easily, I had no idea how far that rabbit hole would really go.

I chose haphazardly a rheumatologist who happens to now be possibly the best in the Northern Virginia area which was fortunate because my situation took seven years to diagnose fully. When I first arrived they reran all the RA tests. He also ran a special MRI on my SI joint, and an HLA-B27 gene test. HLA-B27 is a gene associated with another form of arthritis Ankylosing Spondylitis. This type of arthritis starts in the spine but instead of nodules it fuses the spine over time. The RA tests and HLA-B27 came back negative. The MRI came back with inflammation. I was diagnosed with unspecified spondylarpathy. My NSAID was changed and I was put on a watch and wait status.

Two years went by and then I had something unfortunate happen I was glutened, and I got sick back to back. I am a celiac so I cant eat gluten hence I got sick, then with my immune system out of wack I picked up an opportunistic infection. This triggered my arthritis to move bilaterally to both hands. My doctor ordered tests again, my white cell count was off but everything else was fine. Not trusting the tests I was put on steroids and an antimalarial. I was re-diagnosed with Celiac Poly Arthropy and Unspecified Spondylarpathy.

Over the years these movements continued but without me getting sick so it was changed to Refractive Celiac Arthritis. In the process I was diagnosed with multiple secondary disorders: chronic costochondritis, fibromyalgia, peripheral sensory neuropathy, and raynaud's phenomenon. A few months before I turned 30 I started chemotherapy for arthritis. I went for an unsuccessful second opinion when this treatment did not take hold. My original doctor disagreed and continued to watch and wait. The most startling discovering with the second opinion was a RA test came back on the borderline of positive, and my second SI joint MRI showed progression. So we waited and I continued to have problems with arthritis, tendon issues, and cartilidge problems.

In December 2013 I had convinced my doctor another opinion needed to be brought in. We also agreed it was time to consider higher medications but he felt he could not make that decision without guidance due to my tests being so unusual. While running a new test for RA that I came up a very low positive on, and other panels again I began to gather information on Universities that maybe interested in a Refractive Celiac Arthropy case. These cases are so few most places have never seen or heard of one.

During this time in December I had a toe nail grow into my foot and I was frustrated. My toenails had been an issue for years and had been seen by two podiatrists, my personal doctor, and a nurse practitioner in the past. I had been told they were not fungus, but it was toe nail overgrowth from trauma, and possibly my medications. Despite these opinions I was so frustrated after at home surgery for the toenail I got online and found psoriatic toenails looked shockingly like mine. I went on a psoriasis forum and asked questions. During this time I was trying to figure out how I had nail symptoms and no skin ones as I'd always thought of psoriasis as a rash. It then dawned on me going through photos that I did have skin psoriasis and it had cleared over two years before when they started me on methotrexate. My skin problems were extreme dry skin that had cracked and bled if I scratched it I'd get thick patches. Then out of the blue a friend of mine from an RA forum messaged me asking to see the toe nails I sent her a photo, and she sent one back our toe nails were the same. I immediatly made an appointment with a dermatologist  after researching the ones in the area and my rheumatologist. The rheumatologist took one look and said "That is a game changer for you, I wish I'd known about this sooner." He was very happy that the appointment was in the next week. I went terrified I'd get kicked out of the dermatologist's office to be diagnosed in 15 minutes based on 2 bad toenails, my history, and a family history with psoriasis, and psoriatic arthritis.

December 30th I saw the rheumatologist again and the official diagnosis was made Psoriatic Arthritis (PsA) with Refractive Enteropathic Celiac Arthropy. I started remicade early February after my insurance cleared the drug. Thanks to two bad toe nails a middle man was eliminated and I am finally on the road to recovery. The lesson learned here is never overlook something seemingly so simple as dry skin, and angry toenails they could be the key to a much bigger issue. I could have been on higher end treatments much earlier had one of the prior doctors connected the bad toenails, and my ashy skin but since PsA is often mixed and I had enough issues no one thought that it was yet another autoimmune issues.

Sadly my seven years to diagnosis is not uncommon. These diseases all have common lines despite distinctly different behaviors. You can also have cases like mine where something never seen before occurs psoriatic arthritis with refractive celiac arthropy. Refractive celiac arthropy is seen with RA in 90% of cases and AS in 10%, it is unknown if another case has been seen with PsA. There are less than 30 known cases of refractive celiac arthritis most cases shut down when the diet is started for celiac. This is why I am starting this blog to help others through sharing the pieces of my story others maybe able to relate, and I can generate awareness for these diseases.

Captain Angry Bones