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.

Fatigue

2/16/14 - It is one of those days. Fatigue has me at it's mercy. I have only been awake for 3 hours, and I cannot keep my eyes open. I am also feeling a little ill. Guess I may as well just give in and go sleep. 

2/20/14 - I guess I was REALLY out of it and fatigue had me in its grasp, because I completely forgot to post this. 

I hate when I forget

Forgetfulness is almost second hand with many who have chronic pain, fibro or depression. But, most of us have measures in place to actually remember to take our medications. 

I take my oral medications right before bed, so that is almost a no brainer for me. The injections are supposed to be Saturday & Wednesday. I am normally really good about remembering them without an alarm or reminder . . . UNLESS I am sick. Well, I was sick this past weekend and completely forgot my Methortrexate. I am definitely feeling it, even though I remembered Orencia last night. I can't wait until it kicks in completely.

I've also been dealing with all the emotional aspects of losing loved ones. I have been holding it in for a while. The past three days I have taken down the walls, and cry when I am not thinking about holding it in. I have to remember that the negative or sad emotions affect my RD, not just my mood.

Other symptoms?

I tend to forget the different parts of my body that can be affected by by RD. The past week I seem to be battling with the cervical vertebrae. I know they are already messed up, so I have to contend with the shifting that occurs with C3, C4 and C5. The bookends are trying to push C4 out of the way, and it hurts. I believe that may be one of the the causes for my headaches.

The rest of me is feeling decent, as far as I know. Of course, the headache is off the pain scale, so I think any other pain is not significant enough for me to notice.

Every now and again, the metatarsals on both feet scream. It makes walking quite interesting. It is another one of those catch 22 type situations. When they hurt, I adjust my steps. When I adjust my steps, I end up stressing my hips.

It has been almost 4 years since I have been diagnosed. I am far from an expert at what to expect with RD. No two people are alike, nor do they react to medications the same way. So every day is a learning experience. 

Giving in

I had to give in and start the amnitriptoline again last night. I found it really helps with easing the pain associated with fibro, which, when flaring, sends my RD in overdrive. It is nice to _not_ have a massive headache right now. 

A cool thing happened earlier, when ordering my Orencia. The company researched and found out that we can do a three month supply at a time. I could not be happier. I love when things are made easier.

I am also happy that pain is minimal today. Regardless of how I am feeling emotionally, I am not screaming in pain today.

I think of all the times I get told to try this product or that product. I understand some of the people are genuinely concerned about how I am feeling and trying to find a way to keep me out of pain. Others, they are trying to make money with new products that are available, but not regulated.

The last time I tried one of these products, I ended up with a huge rash on my chest. It was TERRIBLE. I think it conflicted with my RD medications. That was almost eight months ago, right before my surgery. Thankfully the medicines I took helped it go away. 

I find that as long as I can stay positive, and keep my depression at bay, my RD pain is at the low end. I just can't tell people enough how important having a positive attitude toward EVERYTHING can make a difference.

Weather, Emotions, and Headaches, OH MY

Our weather has been "stable" lately. It has been freezing, literally below 32*F, but the pressure has not been crazy. We are starting to warm up over the next few days, and it looks as if it will be steady for about six days. That will be helpful, too.

Don't get me wrong, my joints still hurt, but they don't shoot pain through me, making simple tasks unbearable. 

Like most people with any type of chronic pain or AI disease, I fluctuate between different emotions. Guilt, depression, helplessness, negativity as well as the elation, love, positive factors, etc. I still do not know which one feeds the other, though. I know when my pain increases, my "down" emotions become more prevalent and harder to manage. But, on the other hand, I can feel the "up" emotions and still have a significant amount of pain. However, when external factors hit me like a ton of bricks, I find the joints scream louder than normal. 

Then, with all the external stress (negative), I get massive headaches. They are terrible. Some stem from the pain I feel in the joints of my neck, others from the tight muscles in my shoulders/neck, and then of course, we can't rule out the sinus factor, since there are several strands of the cold & flu running around the schools, and of course, coming home.

I know life will always throw wrenches into my wheels. I try my hardest to just keep going, hoping the wrenches will find their own way out so I can continue with the "have to's". But, sometimes it is so big and tough, I can't blow it off and break down. I am just fortunate and happy that the recent "wrench" came when the weather was not being wonky and when my over-all pain was not as bad as it could have been. 

Frustration

With 2 Feb 14 being the 2nd annual Rheumatoid Awareness Day, I had posted various data on my Facebook page. Posts that were meant to educate family/friends or at least to help them understand.

I get a call yesterday from a relative, checking in to see how everyone is feeling. Somewhere in the conversation, my Rheumatoid Disease (arthritis) became the topic.

At one point, the relative said something about it still being a factor and that it will get better. I explained that this isn't just arthritis. That my immune system is attacking my body and that my internal organs are affected as well. That there is no known cure. I even explained how one of my paternal aunts passed away from another autoimmune disease. 

You know, stuff I post and explain a lot. But "I haven't gotten to talk to you." was the reply. Ummmm. Yes, there have been plenty of conversations about it. Especially since I am going on my 4th year after finally being diagnosed. Even my husband has explained it to people/family.

I just wanted to bang my head against the desk.

I try very hard to educate people, I guess there are those that just don't want to or care to be educated. 

As for my RD pain, today is a good day. Even with the wonky weather we had last week, we are finally staying cold for a while. Most would think it is bad, but as long at the barometric pressure is steady, pain is minimal. I really hate that the steroid shot helped. But, I know sometimes we have to do things that are good for us. 

Ground Hog --- I mean Rheumatoid Disease Awareness Day

Yesterday was the 2nd annual Rheumatoid Disease/Arthritis Awareness Day. To help raise awareness for the disease, I shared many posts from RA Warrior and the RPF. There is a lot of data between both of them to help people understand. I also posted a status or two about RD (RA). It felt good to post the information. If just ONE person read it and took the time to understand, that is one more person who is aware of the battle many of us go through daily. Also, if just ONE person clicked through to the RPF or RA Warrior site/blog, it is another person who "gets" it. Hopefully, those that did understand or got it, shared the information with others.

My shot from the doctor is finally working. It took longer than normal. I also think my Orencia & Methotrexate helped greatly. Even though we are below freezing, my joints are starting to be nice, once again.

My SED rate and C-Reactive proteins were elevated. I don't think there is a time they were ever NOT elevated. Usually both, but on rare visits, one or the other would be above normal limits.

I found another annoyance that RD has given me. When my joints are swollen, they seem to pinch or irritate the tendons and ligaments. Sadly, that travels through my limbs, back or neck. I can tell the swelling is slowly subsiding in my shoulders and hips, because the tendons/ligaments are no longer screaming at the top of their "lungs" at me, they are only making a small noise. It may also have helped that I pretty much just relaxed yesterday.

As for Ground Hog Day -- it's kind of a cute little play on words, I believe. The movie "Ground Hog Day" was about a newscaster who relived the same day, over and over until the finally "got it right." For people with RD or any autoimmune disease/chronic illness, we don't live the same thing every day, but we do, however, experience pain daily, and sometimes, it feels as if we are living our own version of the movie.

Today is a decent day so far. Time to get on with the rest of my day.