The Results are in, sort of

Yesterday, I received the results from my X-Rays and routine blood test. I was partially relieved that the waiting game for 2/3 of the tests was over, and frustrated beyond belief at the results.

According to the X-Rays on my hands and wrists, RD not progressing. So, in that portion of my body, I am stable.

My routine blood tests show my C-Reactive and Sed Rate are slightly elevated. Nothing major, they have been worse. I noticed I was borderline anemic. I have been fighting anemia since my back surgery two years ago. 

So. Does all this mean my pain is in my head? That there is nothing happening with my body? I feel like something is getting worse, and it is NOT fun or nice at all. I am holding out hope that the final test (I think Vectra® DA) will hold answers.

My knuckles are screaming at me to stop typing. I guess it is time for me to invest in voice recognition software. Sadly, it only works with the computer, not with my love of writing in a journal or drawing.

I am constantly on the verge of tears from the pain. I was able to get sleep last night, because I took a night time OTC pain medicine. I was asleep by 8 PM if not earlier. That was after I had washed some dishes, folded and hung some laundry, worked on Homecoming Mums, went to the craft store to get a few additional items for said mums, and picked up two of my children from school. I haven't been able to walk my 30 minutes a day in over a week. I am SO done. 

Today, I was able to finish one mum and make two others. I have a fourth that needs a little more attention. Hopefully I can do that tonight. Plus, tonight, I need to work on two shirts for tomorrow's Homecoming Pep Rally. And just an extra shirt for my youngest.

I also discovered about 30 minutes ago, that I am pushing my luck walking up and down the stairs. My hips, knees and feet get pretty angry. Sometimes they give me silent pain, other times, I can feel/hear the joints grinding with each step.

UGH. I am at the point where I just want to give up on the treatment, since it hasn't been 100% helpful. 

Mountain or Molehill

“Don’t make a mountain out of a molehill.” Nicholas Udall, 1548

It basically means don’t exaggerate (the severity of) a situation.

But, what if we used the inverse of it? Don’t make a molehill out of a mountain, does that mean we are exaggerating less or just in a different direction?

I’ve seen memes that show the top of a glacier, small in comparison to the size of the unseen glacier that lies below the water. Would that be the making a molehill out of a mountain? 

Most people only see what is above the surface. Unless they have x-ray vision or can read minds, there is no way of knowing exactly what one single person is trying to cope with on a day to day basis. Some, it is an hour by hour basis, where other’s it could be month by month.

I think the most difficult thing for a human to do is not judge by what the cover shows. If the paintings of Adam and Eve, nude in the Garden of Eden, had not been labeled as such, but just painted on the cover of a book, would religious individuals open the book and read it, or condemn it as filth? I ask, because it could very well be the cover photo of the Holy Bible. I am not trying to be sacrilegious, I am just posing a question I have often answered.

I have seen some graphic novels in a children/young teen section of the library that were placed there because simply because they are “comics.” Thankfully, my ten year old son knew what was drawn, and the acts happening in the graphic novel were NOT for his eyes. Another way of judging a book by it’s cover.

But, my molehill out of a mountain, or glacier, is more than just that.

On my surface, you may see I am tired, moving slowly, smiling, laughing, cringing now and again, but isn’t that everyone? 

Below the surface, there is so much more. Praying that when I lift the cup from the table does not result in it being spilled on the table, me, or anyone near me. Hoping I will be able to get through part of a meal before having to change hands because my right one hurts too much from holding the utensil. Having to buy a super protective case for my phone because my hands will twitch or give out on me when holding it, then fall and break. Calculating how much I can do at one time before I have to relax, because if I do not stop, I pay the price a little later in the day or it could be 2 days in bed because I can no longer get my joints to work without them screaming at me. Dreading the two days a week I have to receive shots, not because of the side effects (I have none), but because I am just so tired of being a pin cushion, and never knowing if they are truly going to help me. And those, my friends, are just the first few layers under the surface of my glacier.

There are days I am able to raise the surface, so what people see it just a smile, a laugh, and the cringe once in a while. Those are my good days. Those are the days I can walk close to a mile, kick a ball with my son, eat spaghetti or a steak without crying, and drink from a cup that doesn’t have a spill proof lid.

I don’t want you to feel sorry for me. I want you to understand and learn what it is like to live with an autoimmune disease or a chronic illness. I want you to look at me, when I have to park in handicap or use the scooter at the store, not with disbelief but with the acceptance that, “Hey, she just might be having a bad day and needs the extra help.”

Driving with RD and other tidbits

Rheumatoid Disease is a difficult condition to see with the naked eye, probably because we cannot see pain. 

I have a handicap placard for my windshield. I use it when I am feeling the most amount of pain. Despite the fact I try not to park the spaces closest to the store, because I know there is someone out there who is worse off than I am, people still give me looks of disbelief. When I get out of my car, the first thing I search for is a shopping cart. I hate when I have to use my husband's or children's arms for support to get into the store. Even if I am simply going into the store to window shop, I use a cart. Call it a security blanket, but I would rather have something to "lean" on than be begging for help walking.

Lately, driving has become somewhat of an issue. Grasping the steering wheel is not an easy feat. Then, if there is any type of traffic, changing my foot from gas to brake and back again causes my hip, knee, ankle & feet joints to scream and beg me to stop. Short drives are a little easier, but if I have to stop at a light for a period of time, I find using both feet on the brake (one to support the other) really helps keep pain at bay. And that is just scratching the pain surface of driving.

As we all know, RD and many other autoimmune diseases come with fatigue. Not the fatigue you feel when you are sleepy, but the fatigue you feel when you have the flu. The one that slows breathing to a minimum, weakens muscles, decreases reaction time, and makes keeping eyelids open a monumental task. Yet, the brain is still running at full speed. The days when I am at a 9 out of 10 on the fatigue scale I created, I am terrified to drive. 

I recently asked on social media how others with similar issues handle driving. What do they do to assist them? I received one response, the person gave up driving completely and uses public transportation. If the school district did not charge for bus transportation to and from school(s), I would consider it, however we don't even have a public transportation system where I live. I would be required to call a taxi if I needed to pick my children up from school or if they had an emergency. It just is not a viable option for me. I do not live close enough to family to receive their assistance, and I am pretty much the only one on our road who doesn't work, so relying on neighbors is out of the question.

I know this blog is a little bit all over the place. That may be in part due to my fatigue. Thank you for taking the time to read this.

K

Biomarker Testing - Vectra® DA

On 16 Sep 15, my Rheumatologist decided it was time to order a blood test to look at the activity of my RD, not just my inflammation rates, because it seems my pain has been increasing, despite my medications. 

The test she ordered is a biomarker test named Vectra® DA. According to the website, the test measures 12 biomarkers of RD, and it is a tool to help the rheumatologist understand how active the disease is in a patient. It looks INSIDE the body, rather than relying on the physical assessment the doctor performs. BlueCross BlueShield of North Carolina published an information paper describing the procedure, to include the list of 12 markers:

• Interleukin-6
• Tumor Necrosis Factor Receptor Type I
• Vascular Cell Adhesion Molecule I
• YKL-40
• Matrix Metalloproteinase 1
• Matrix Metalloproteinase 3
• C-reactive Protein
• Serum Amyloid A
• Leptin
• Resistin

When the test is concluded, the biomarker results are totaled and scored between 1 and 100. Vectra® explains the results in more detail, however the number is broken into three categories - 1-29 (low), 30-44 (moderate), 45-100 (high). This page also offers a link to their mobile application that will help the patient track their RD on a daily basis. It has various symptoms that can be tracked, and I highly recommend it.

Waiting Game

Waiting is by far one of the most difficult things for me to do when I am awaiting results from blood tests and x-rays. I usually have my standard blood test results two days after my appointment. However, since my rheumatologist sent blood off for a Vectra DA biomarker analysis, I think she is waiting for them to be returned to her before sending results. I also had X-Rays done last Friday. She should be receiving the results sometime today. All of this waiting to find out if I need to take a different course with my treatment.

On 16 Sep 15, my rheumatologist gave me a shot of Toradol. It is an NSAID that is mildly stronger than Naprosyn. It lasted from midday Tuesday to mid-morning Wednesday. I waited a few days before I took any other pain medication because I didn't want there to be an adverse reaction with the Toradol. Because my body seems to be accustomed to NSAIDs, I decided Tylenol would be my new choice. Sadly, it doesn't really help with the joint pain.

So, today I sit here, trying to put my thoughts into the right words. My typing speed has been reduced by 50% or more, because I have so much pain in my wrists and fingers. (90 wpm to 45 wpm definitely makes a huge difference in the amount of time I spend here.) When I finish, it is time to hobble down the stairs and do chores (because I had a hard time moving for the past three days, everything is piled up and waiting for me), and hopefully get some of the Homecoming Mums made. Thankfully I have until Friday to finish them, but I'd love to be able to get them done yesterday :(.

Hopefully, sometime soon, I will have information. Until then, wish me luck.

Sorry for my absence

I wanted to apologize for my absence. It just occurred to me that I could install the application on my phone to make posts. I have been unable to walk up the stairs to get to my PC. Between my normal pain (which came back last week) and pulling a hamstring, I have been hobbling.

The steroid shot I received from my PCP worked wonders. Also, the change in my anti-depressant has helped.

I saw my rheum doctor today, and she is going to have a new test run on my blood to check the activity of my RD. She also wrote orders for me to get xrays taken. We are searching for more answers. It seems along with my RD and fibro, I have OA.

Anyway, I apologize for not updating this sooner. Sometimes my brain takes a vacation.

I am so done with hormones....

I just can't seem to win lately. Now that the stress is mainly managed, I am mildly confused as to why my Fatigue is starting to tip the scale once again.

I look at my daily medication list and everything is there including my B-Complex, Vit D with Calcium, and Iron. 

So, I took a deep breath and decided to check one other critical situation that affects my Rheumatoid Disease. I clicked on the "My Calendar" application on my phone, and the answer nearly slapped my face. Ovulation time. 

I have been "allergic" to my monthly cycle since it started. PMS (or PMDD as some like to call it now) runs rampant with me. Then, when I was finally able to get pregnant, I was toxemic with the first two pregnancies. The third, my body wanted him to come out 6 months early :(. He was the one that kicked my RD into high gear.

I asked my doctor if getting a full hysterectomy would ease my flares. She said it might, however, with the synthetic estrogen I would have to take, my chances of getting cancer would increase exponentially. And being there is a history of various cancers in my family (both sides) it is not recommended. 

*sigh* So here I sit, at 0900, wishing I had a way to keep my eyes open. My breathing has already slowed to what I would do if I were sleeping. Even my muscles are weak. 

Oh, and my medicines seem to have worn off already. I had a lot of relief yesterday after Orencia, but today, the portion of my body from my neck to my fingers is very irritable. 

Aftermath

The aftermath of yesterday's events has taken a toll on my body. Mainly in the way of fatigue so far this morning. I really have to put my stress relieving strategies into practice. Sadly, it is always easier said than done for me.

Of course, being out bodies react however they truly wish to any type of stress. Some people have digestive problems, some get headache, some think food is the best while others look at food and get ill, and some can be ducks.

I. I so wish I was a duck. 

Biologics

******I am not a physician or nurse. The following information I obtained while researching Biologics before my Rheum doctor prescribed them for me. I also searched WebMD (links in the blog) for the names of the medications and general information about them.******

Biologic Response Modifiers are more commonly known as Biologics. They are a "newer" way of treating Rheumatoid Disease as well as other Autoimmune Diseases. 

There is not just one available, and not all of them work in the exact same way. The Biologics that have been approved for use in treating RD are:

List from WebMD:
Actemra
Cimzia
Enbrel
Humira
Kineret
Orencia
Remicade
Rituxan
Simponi

Interestingly enough, because of the similarities in AI Diseases, some of the above listed can be used to treat them as well.

According to WebMD, Biologics are made from proteins, genetically-engineered & derived from human genes. What this means is rather than mass targeting the immune system, these pinpoint a specific area.

The two methods to administer Biologics, when the options are available, are injection and infusion. The first is a self-administered shot (weekly or as prescribed), usually in the abdomen or thigh areas and in the comfort of the home. These are generally mail order and pre-filled syringes. The infusions, however, require a visit to the doctor's office, where a nurse administers the medication through IV. The frequency depends on the medication, but roughly every four weeks, the patient returns to the office. 

As with all medications, there are a list of side effects for each of these medicines. One of the biggest, which I find important because I have children, is the increased risk of infections or becoming ill. My RD doctor always advises me to not administer the shot if any of the following are present: Open wounds, current infection, taking antibiotics or if one of my children is taking antibiotics. She also makes sure I receive a flu shot each year, because the flu can land me in the hospital. I also ensure my family receives their flu shots (not mists).