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
Monday, March 31, 2014
Thursday, March 13, 2014
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.
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.
Friday, February 28, 2014
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.
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.
Wednesday, February 26, 2014
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.
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.
Monday, February 24, 2014
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.
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.
Thursday, February 20, 2014
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.
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.
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.
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