A Little Relief

Finally a little relief since 4 May. My MTX shot on Saturday and last night's Orencia seem to be helping. I still have a lot of morning stiffness. My hands, knees, hips and shoulders are still inflamed, a little. I have also started a Essential Oil regimen that tends to help a lot. The thing with them, is I have to stay on top of them. 

So, I am doing a little better, now. 

I have found that one blend of oil (DigestZen) which can be put into veggie capsules or a beverage throughout the day, really helps to keep the inflammation at bay, plus makes me feel better overall. Also, the LLV regimen works wonders. It is 3 different all herbal capsules. They help me feel a lot better. 

So, those who want to add a holistic approach to their RD meds, this is one way. I can help with it, too. 

Time gets away from me

Time seems to get away from me. Since I have returned from California on 4 May, my Rheumatoid Disease has been in a flare. My essential oils have been amazing at helping me get through the day. They have also kept me from getting sick, when everyone else around me is sick.

It is really sad, though, that when it comes to getting my weekly shots, my husband said to me, "No, not going to give it to you." (half jokingly) Then he pauses and says, "They don't work anyway." My reply, "You've noticed? I thought I was the only one who noticed that."

I forgot my MTX this past weekend. It is too late to get it now. I will just wait until this Friday. Orencia is either today or tomorrow.

I am still trying to do everything I can around the house and yard. I find it is easier for me to do yard stuff than house stuff. Maybe because I am "communing" with nature. I take more breaks than I really want to take, because the joints start hurting like crazy. For me, it is most annoying.

The other day I helped a friend who had to move from her house. I wouldn't stop for a break, because I knew if I did, I'd feel the pain. I couldn't afford to feel it that day. She was in need of help, and I was not about to let her down. When we did stop, though, to go to her new apartment, my body pretty much revolted against me. My legs went numb and I couldn't walk anymore. I was exhausted physically from the work, my joints were inflamed beyond belief, and the mental exhaustion was unbearable because I forced myself to conceal the pain I was feeling, not just from others, but from myself.

Today, I woke up with extremely swollen hands, tender elbows, shoulders, hips and feet. My knees are not too terribly bad, yet. It seems the joints I use the most (hands/feet) are the ones in the most pain.

Then, add into the equation my neck, which likes to move this way and that, causing not only an annoyance, but neck pain & periodic headaches. I truly just want to crawl under a rock and hide for a while. 

Last night, the only way I was able to fall asleep, was to take 1 Tylenol PM. If I took 2, I would be out all day today. I could not find a position where my hands & legs felt comfortable simultaneously. I could get one area, but never the other. Thankfully, the medicine kicked in and I was able to rest a bit.

The one thing that scares me most about all this, my doctor said she is out of options for me if Orencia stops working. UGH......Add that stress to the rest of the disease stress and I worry far too much.

Wish it were better, but . . .

Okay. Birthday trip to California. Then, cleaning & Mother's day. Spring concert, sick little boy for a week, more cleaning and other stuff. *sigh* The flare started right after Mother's Day. I had to use my walker the night before my baby got REALLY sick. I couldn't use it any day after that, because I had to tend to him & carry him as needed. That was an 8-9 day stint. I aggravated it even more this past weekend when I did some work in the yard & repotted plants.

Because most of the family was ill the week after Mother's Day, I didn't take my Orencia. This week, I have a couple of open wounds, plus my nails are exposed because the false nails started coming off and ripping my nails with them.

So, here I sit. On a scale of 1-10, I'm around an 8, and that is being generous. I took one medicine to help with the fibro aspect of my illness. But my neck, hips, feet, toes, shoulders & fingers/wrists are so far in pain, I want to cry, but can't. Even typing makes my shoulders scream in pain, and I'm not moving my arms...

I'm not counting spoons, I am not asking for sympathy, I simply wanted to get this out because Rheumatoid Disease has me completely defeated.

*cries*

I am so, ugh. Pain is terrible. I want to cry. I want to crawl into bed and not leave until the pain goes away. Probably barometric pressure. but.... I am so afraid, right now, that the medicines are no longer working. If that is the case, my rheum is out of options. I can't wash dishes. I can't stand long. Folding laundry is difficult on my shoulders. I don't mean to complain, but when the pain gets this bad, it reminds me what is _really_ going on inside my body.

I used an essential oil on my neck and hands yesterday. It was one of the best things I've done. It kept my pain at bay until bed time. I should probably do it again. 

These essential oils are AMAZING. They have helped us so much. It isn't a one time, easy fix thing. For some things, it is a constant or every day thing. Like my Rheumatoid Disease pain. That is a constant thing. I have to do it daily. 

Okay, I am done complaining. 

Essential Oils

For a long time now, I've been wanting to find something "natural" to help with the pain that comes with Rheumatoid Disease. I try to not take any type of pain killer, unless I am at the end of my rope.

Last weekend, I flew to California (home) and visited with my family. One of my sisters started using essential oils for a few of her ailments. It helped her so much, she began to sell it. For my birthday gift, she gave me Deep Blue Oil Blend & Deep Blue Oil Rub. I used it on my hands, and relief was amazingly fast. My sinuses were going crazy from the flight. A peppermint beadlet that I broke in my mouth with my teeth helped clear them, then swallowing it, helped the upset stomach I was getting from nerves.

So, with these two things, and hearing how they helped with my mom, sister & brother-in-law, I was on my way to being convinced. Then I heard how it helped a young lady, who had been suffering from an unknown ailment. Something doctors couldn't figure out, no matter how many tests they did. There was no more indecision in what I needed to do.

I now can sell the products. I bought a kit for the family. It has helped my daughter with her eczema. Me with a headache & TMJ. I am SO excited. I am going to make bath salts with peppermint & lavender. One to help with my pain and the other to calm my body.

I am so glad to have found something that can help me with pain management and other ailments. They also help with cleaning and one blend has been known to kill MRSA.

This is not a cure, by any means, but a way to naturally get relief.

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.
____________________

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.

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.

Steroid shot - for the win

I suppose I should have know the pain I was feeling was more from RD than it was from fibro, however, like many people I know, I am too stubborn to ask for help.

I think I have a love/hate relationship with the shot I received yesterday. It seems to work from the head down, making its first impact with my emotions. Little things were putting tears in my eyes last night.

I felt it start working it's magic as the day progressed and I definitely noticed a HUGE difference this morning.

I was able to make fists with my hands. I haven't been able to do that after waking up in about two months. I still have some pain in the knuckles of my pinkies, but they both have been injured in the past, so it is to be expected. My neck is also being very kind. The pain there went from a 4 (0-5 scale) to a 1. My lower back, which I haven't felt pain since recovering from surgery, was at a 5. I wanted to use my walker, but refused because of a silly word called "pride." Today it is at a 2. My hips, knees and ankles, all around 3-4 are at 0-1. My feet, are a slightly different story. My toes refuse to be cooperative with the medicine. I am thinking it will take a bit longer. I went from a 5+ on the pain in my toes/feet to a 3-4. Maybe because I walk so much, they are just tired. 

I also listened to my rheum last night by taking an amnitriptoline. I am still groggy from the medication, but I will manage. The "have-to's" generally keep me going. 

The Texas weather roller coaster is still running. I keep asking the ride operator to let me off for a little while, but get denied. Today is extremely windy. So even though the high is to be 60*F, it will not feel that way. Then, starting tomorrow night, we are expecting some sort of rain through next Wednesday. Our high for Friday - Sunday is between 65-75. Then, guess what!? We drop back down to the 40's. I wish the barometer in my body would lose its battery so the pain wouldn't be as bad, but, alas, it is better than an Energizer.