Folic Acid, B-Complex -- A MUST

When I hear anemia, I immediately think of the need for iron in my blood. However, after the past few days, I have learned differently.

My rheum has always told me to take my Folic Acid because it will help with the side effects of MTX like upset stomach & hair loss. Never did I realize until I did research that it also helps with the reproduction of red blood cells. 

With MTX & Orencia on my medicine list every week, my RBC count is always on the low side. I never realized that this can cause anemia, because there is less O2 in my blood stream.

I was having breathing problems because my heart was on overdrive. I felt completely horrible. I thought I was having a heart attack, in all honesty. 

Between research, talking to a nurse & my doc, I figured out what was behind the problems. So, I took a B-Complex vitamin & Folic Acid. After 4 hours, my blood pressure began to return to normal, as did my pulse. Even the headache disappeared. 

So, something I thought was really not "important" turned out to be VERY important. PLEASES, if you are reading this and decide to not take vitamins, think again. 

Can I please schedule pain/inflammation??

It would be SO cool if we could schedule our pain and inflammation day(s) to jive with our schedules. 

After having wonderful labs a couple of weeks ago, I went into a massive flare. I know there is the joke/saying, "I don't have time for that." However, for me, it ISN'T a joke. I was supposed to help with district track meets this week in the concession stands. I couldn't do it, because there was so much pain, all over, and it just wouldn't go away.

I have been bordering on calling my rheum and begging for some sort of pain killer. I want to cry, but it will do no good at all. MTX and Oriencia are taking a long time to kick into my system. Hopefully, with this Friday's dose, it will kick in faster.

Between last week's storm and the wonky barometric pressure, it's crazy. It is EVERY joint. Neck, jaw, shoulders, elbows, entire wrist & hands, ribs, sternum, I really don't need to keep listing. 

I have so many things that need to be done in the house. Sort & start laundry, clean the living room, finish moving my "office" back upstairs to the _real_ office. But without relief in energy & pain, those things are a little hard to accomplish.
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Today, I took my daughter to get her blood tested. Something I probably should have had done to myself ages ago. She has so many of the symptoms. We should know SOMETHING in the next few days.

Going Well

Orencia seems to be doing well for me. As long as I have no issues that require antibiotics, I take it weekly. I still have to remember not to overdo things. Like working my tail off in the yard to get rid of weeds. I will have to break down and actually call a place who can treat our yard. We can actually afford it now, so it will be easier.

My daughter is experiencing joint pain. She also gets sick quite easily. I am going to have her pediatrician do testing, but I also need to see if I can find a pediatric rheumatologist for her. I don't want this for her. But if we can catch it early...

Just wanted to post something positive about myself, at least. <3

RD + Antibiotics = No Biologic

After seeing a dermatologist 2 weeks ago, I found out I have numular eczema, psoriasis, and seborreic dermatitis. Oh, and with the psoriasis, because I could not find anyone who could treat it properly, let alone listen to me, I had a staph infection in it. I also think it was on my face, too, where the Seb Derm is. I am finally off the antibiotic, but can't take the biologic until next week. I think this is the benefit of self injection over infusion.

The external inflammation is not so bad. There is internal inflammation, though, and I can certainly feel that. The pain in my hands, neck, hips, knees, shoulders. Yeah, it's all there. Kind of annoying, but I can live with it, simply because I found another doctor who listened to me, and that has been 10 years searching. Yes, even though I hurt, I am not upset/sad, because it is for a good reason.

Someone who has known me for quite some time, asked about my RD today. I explained about my surgery 8 months ago, about my medications. "Well, it's bound to get better." Was the response. Even after YEARS of explaining there is no cure, it baffles me how people just don't seem to understand at all. I understand the desire to feel positive, and I appreciate the sentiments. Truly. But sometimes, I just get confused. I am definitely guilty of just conceding, and saying, "Yep, you are right."

I try my hardest to not be a "me to" person or try to "one up" others. It is hard sometimes, because I do find myself around others who seem to thrive on doing so. I have spoons. Most of the time, I am out of the daily allotment before 1:00 PM. But I don't stop. I keep going. I HAVE TO. There are days when I feel like I have nothing left in me, but I do things anyway. And I do it with a smile, most times. It isn't until I am solo or at home that I "relax" and release. Sadly, I just don't like the fact my children have to see me like this. It truly bothers me more than anyone will ever know.

Overwhelmed

Today, I am 100% overwhelmed with my AI disease(s) and the possibility of my daughter having them as well.

I researched Nummular Eczema. No known cause. Doesn't go away. Cause by temperature changes and stress. Prevalent in patients who either have, or have a family history of, allergies, asthma, or atopic dermatitis. *ding ding ding* We have a winner, folks.

Then, Sebborheic Psoriasis (or Scalp Psoriasis) according to www.psoriasis.org. It is nasty. And had I not just stopped at a dermatologist's diagnosis 5 years ago, and a PA dermatologist's diagnosis 4 years ago, and searched for someone who would LOOK at me, not just glance, I'd have had this diagnosis ages ago. AND, I may not have gone almost bald on the back of my head from it.

My daughter also has something I had as a teen. Something that can be outgrown. Ichthyosis. So, I apologize to her daily. She is so my daughter, it isn't funny. I had that as a child. I also was told I had psoriasis. Her joints are hurting her. Hips, knees, feet. That is where my RD started. I'd been like that since I was her age, as well, but no one would ever listen. We _will_ get to the bottom of everything with her. I don't want her to have to suffer like I did, not when the medical advances we have now. 

So, I am on the verge of tears. Fighting fears beyond belief. The only way I can get most of the stress out of my body, is to do exactly what I am doing now, blog or journal.

Psoriasis

I don't know whether I want to laugh or cry. 

I saw a dermatologist right today. The positive - no melanoma. However, with my AI & meds Oh, and not to mention my dad passed away from Merkle Cell Carcinoma, I have to get checked annually. 

Another skin "inspection" revealed my horrible eczema. Eczema comes in many forms, but I'm never normal.

The final, was my ears. A rash that has been happening for YEARS. When it is not infected, it is classic psoriasis. The location it could also be called seborrheic psoriasis. I FINALLY FOUND A DERMATOLOGIST WHO WILL LISTEN. I told her that I grew out of the rash that comes with it for the most part, but my elbows used to crack and bleed, they are dry. 

There we have it. At least I am already getting treatment for an AI.

Last night, I attended my son's band concert, and for the first time, in YEARS, I was NOT in dire pain. I was able to walk, sit, stand, and just be the old me for a while. I think a lot of it had to do with the fact I told myself before I left the house, "You will not let any pain get to you. Ignore any that is there."

The pain was minute, and I didn't let it hit until after I got into the car. It was noticeable, too. Many people where genuinely HAPPY to see that I was not in pain and I could walk. Love my positive attitude and what it can do for me.

Weekends and me

For many people, weekends are the time to relax, enjoy family time, and catch up on laundry/house cleaning. I used to be one of those people.

Don't get me wrong, I still work on laundry (although my children do a lot of it, I just separate and fold it), I catch up on some cleaning, definitely have family time.

But, Monday - Friday, I have no choice but to ignore fatigue, pain, and all the other nastiness that comes with RD.

On Friday, around 4:30 PM, my body goes into recovery mode. The fatigue becomes so intense I can no longer ignore it, and I crash, hard.

This past weekend was no exception to it. However, I struggled through the pain and fatigue because I wanted to support our HS Band in their annual Spaghetti Dinner fund raiser. It was worth every last spoon I could find to attend this wonderful event.

Before we went to the dinner, however, I made sure I received my MTX injection.

When we got home, I took all my meds, to include 1 amnitriptoline to help with the added stress. The rest of the weekend was sort of spent in a daze. Even after the medication wore off Saturday, I was beyond exhausted on Sunday. 

It is a vicious cycle. Kind of like chronic pain and depression.

I have a lot of things I need/want to do today. Finding the spoons & motivation to do so may be difficult, but I will try my hardest.

One thing I have learned, my body and mind can endure more than I think they can. I know I have to set my limits, and I do have them. However, sometimes I raise the "bar" on them just a tad, so I can get through a day or week.

This weekend will be another challenge. One I will face with a smile on my face.