I’m going off the rails on a crazy train…..
As you likely already know, Joe, my brother, isn’t doing well. He continues to lose weight, and every time I see him, he looks weaker and weaker.
I don’t think I’ve blogged about my brother. About 8 years ago he had a very large melanoma removed from the side of his head. He went through a partial chemo treatment, and then life happened. He didn’t finish his treatments. For the past couple of years, he’s not felt quite right, and made numerous trips to various doctors, hoping to find one that would run a PET scan and check for cancer. Last year he went to the Brown Cancer Center, supposedly one of the best in the Country, and they assured him if the melanoma had no returned by now, it wasn’t going to return. They sent him on his way, and told him he would be fine. This summer, he continued trying to get a doctor to listen, and actually do some tests to see what’s going on. It wasn’t until he got sick and went to the ER, thinking he had pneumonia, and got a chest X-ray, and a mass was found on his lung. That was a little over 2 months ago. Since then, we’ve learned that the cancer is Melanoma, it’s Stage IV, and it has spread to various bones, including 7 spots on the spine, his lymph nodes, and various other parts of his body.
Last week he went for a scan so he could be marked for radiation. They said it may be up to 2 weeks before he can start radiation. He goes to the cancer doctor this week to see if they’ve determined which chemo will respond best and help slow the progression. Here we are, over 2 months in, and nothing has been done. I see him gradually decline with each passing week. Sure, he has medication to help with the pain, but right now the best pain therapy would be radiation. While we’re all quite aware there’s so cure for Joe, and this can’t be fixed, we would like to see him live out the rest of his life as pain free as possible. So far, it’s not going so well. Why is everything so difficult?
On the other side, I’m still fighting to get Mya evaluated. I ended up scheduling a meeting with the Superintendent of the school system. It wasn’t until that meeting was scheduled that I finally received a call from the lady over the department that handles the evaluations. Why has it taken 6 months, and a meeting with the Super, to get someone to return my call? When I go for my meeting, I will make it very clear to him that there’s a major gap in the system that needs to be addressed.
I’ve been at this since Mya started Kindergarten, and things are not getting any better. Of course, the anxiety medication has made some major improvements in some areas, but there are other areas where we continue to struggle, and those are only getting worse.
While waiting for the school to call me back, I’ve also had her to the doctor, talked in depth about my concerns, and asked for another referral to the Weisskopf Center. I had to call the office again when I hadn’t heard anything from anyone. And then, when I happened to be in the office for blood work, I asked if she could look and see if anything had been done. Apparently it hadn’t. Go out another 2 to 3 weeks, and I’ve still not heard anything, I try my luck contacting the Weisskopf Center direct. It wasn’t until today that I finally learned her referral was received and processed yesterday. I should be receiving the packet that has to be completed and returned. Once they receive the packet, we will go on a waiting list. I asked about the wait time. 6 months. After 6 months of trying, I get to wait another 6 months.
My daughter is hurting herself, and I can’t get her help. My daughter has so many other things going on, but I can’t get anyone to hear me.
Why does a person have to scream from the rooftop to be heard?
Bob is having some issues that we’re trying to address. Tests ran, more to be done today. He goes for a follow up in 3 months. I’m quite shocked his doctor doesn’t want to see him sooner to go over the results in person. No, his doctor lets the nurse call you with the results. But, what if I have questions that the nurse can’t answer? I have to wait another 2 or 3 days to get the answers? Or, do I do the most logical thing and Google it? There’s fuel for the fire.
This is life we’re talking about. Not a broken bone that can be casted, but hard core serious life issues. Why do I feel like it’s not as important to those that can truly help?
So, this has been my mind clutter for the past 6 months. I think I should probably go ahead and make an appointment for that rubber room. With the paperwork, office visits and wait time I would likely face, I’ll be ready for it by the time the red tape has cleared.
TTFN!
Wednesday, October 22, 2014
Tuesday, September 9, 2014
Mental Health
My Face Book newsfeed has exploded with news of Robin Williams’ suicide, and his struggles with drugs and depression. I am very saddened by the death of this wonderful comedian and actor. Robin Williams was one of kind. A true classic. I can’t imagine the sadness his family is feeling right now. My heart goes out to them.
I find it sad that it takes something like the death of a great comedian to bring a very serious illness to light. People have struggled with mental illness for years, but you rarely hear about it until it happens to someone that’s more “newsworthy”. Is Robin Williams’ life more valuable than Susie that lives down the street? Not in my eyes. Every life is valuable.
Mental illness has a very taboo reputation. You hear it on the news, but only when something tragic has happened as a result.
Why can’t we have mental health funding like we have cancer funding? Why can’t we show mental illness in a day to day environment, showing the people that are struggling, but still making it work. I’m sure there are millions that could represent those struggling with some form of mental illness.
My daughter suffers from a mental illness. General and Social Anxiety, or for short, GAD and SAD. It took me 4 years to get her diagnosed and on medication. Since the medication, she has improved tremendously. She still has her moments, and triggers, but now that she’s on medication, her hair isn’t falling out, as bad, and the weight she had lost is slowly gaining. I asked professionals for 4 years, is this normal? Do you see this? Do you notice these behaviors? No, no and no, she seems fine to me. It wasn’t until this past school year, one of her teachers opened up to me and told me she noticed the behaviors immediately. I asked her why no one would tell me in the past. Because sometimes the parents don’t want to hear the truth, and sometimes parents don’t see it themselves. But I was seeing it, AND asking about it. Still, no one wanted to get involved. I want to help my daughter, not look the other way or act like it’s non existent.
Now that I had a teacher that would confirm my concerns, it was time to talk to the doctor again. Let’s just wait and see if it gets better before we start meds. Okay. Then her hair started falling out, and she lost a lot of weight. The wait was over. Back to the doctor again. Get a referral to be evaluated. Wait a little longer for that appointment. Get a diagnosis. Back to the doctor for meds. Start therapy.
Why does the process have to be so long, and take so much time and effort? 4 years. She’s now 8 years old.
Because I’m only her mother, and not a doctor, I’m not qualified to make a judgement call that something isn’t quite right with my childs behavior?
Getting help is the hardest thing I’ve ever had to do. Family doctors can only prescribe meds, and refer you for evaluations. The people that evaluate, do just that, evaluate, and give their opinion on what they feel is the issue. Then you go to a therapist and spend countless visits learning nothing. When we were seeing the therapist, I would come away with more questions, and no answers.
Mya’s behaviors continue to be erratic. We don’t know what to expect from one day to the next. Do we have the help we need? No. Is the doctor helpful? Only for the meds. Is the therapist helpful? He wasn’t for us. Is the school helpful? Not at all. Where does that leave us? Needing help. Where do we go from here? I honestly don’t know.
I find it sad that it takes something like the death of a great comedian to bring a very serious illness to light. People have struggled with mental illness for years, but you rarely hear about it until it happens to someone that’s more “newsworthy”. Is Robin Williams’ life more valuable than Susie that lives down the street? Not in my eyes. Every life is valuable.
Mental illness has a very taboo reputation. You hear it on the news, but only when something tragic has happened as a result.
Why can’t we have mental health funding like we have cancer funding? Why can’t we show mental illness in a day to day environment, showing the people that are struggling, but still making it work. I’m sure there are millions that could represent those struggling with some form of mental illness.
My daughter suffers from a mental illness. General and Social Anxiety, or for short, GAD and SAD. It took me 4 years to get her diagnosed and on medication. Since the medication, she has improved tremendously. She still has her moments, and triggers, but now that she’s on medication, her hair isn’t falling out, as bad, and the weight she had lost is slowly gaining. I asked professionals for 4 years, is this normal? Do you see this? Do you notice these behaviors? No, no and no, she seems fine to me. It wasn’t until this past school year, one of her teachers opened up to me and told me she noticed the behaviors immediately. I asked her why no one would tell me in the past. Because sometimes the parents don’t want to hear the truth, and sometimes parents don’t see it themselves. But I was seeing it, AND asking about it. Still, no one wanted to get involved. I want to help my daughter, not look the other way or act like it’s non existent.
Now that I had a teacher that would confirm my concerns, it was time to talk to the doctor again. Let’s just wait and see if it gets better before we start meds. Okay. Then her hair started falling out, and she lost a lot of weight. The wait was over. Back to the doctor again. Get a referral to be evaluated. Wait a little longer for that appointment. Get a diagnosis. Back to the doctor for meds. Start therapy.
Why does the process have to be so long, and take so much time and effort? 4 years. She’s now 8 years old.
Because I’m only her mother, and not a doctor, I’m not qualified to make a judgement call that something isn’t quite right with my childs behavior?
Getting help is the hardest thing I’ve ever had to do. Family doctors can only prescribe meds, and refer you for evaluations. The people that evaluate, do just that, evaluate, and give their opinion on what they feel is the issue. Then you go to a therapist and spend countless visits learning nothing. When we were seeing the therapist, I would come away with more questions, and no answers.
Mya’s behaviors continue to be erratic. We don’t know what to expect from one day to the next. Do we have the help we need? No. Is the doctor helpful? Only for the meds. Is the therapist helpful? He wasn’t for us. Is the school helpful? Not at all. Where does that leave us? Needing help. Where do we go from here? I honestly don’t know.
Wednesday, August 13, 2014
Sensory Integration Disorder
We have more answers. During our last visit with the psychiatrist, Dr. U, he gave Bob and me an Asperger’s questionnaire to complete, separately. I completed mine at the office while he was talking with Mya, and Bob completed his at home. Neither of us knew what the other had listed for our answers, so it was an honest test that showed how we each view Mya and her behaviors. I had anxiously been waiting for our visit yesterday.
Based on what Bob and I answered, he doesn’t think she has Asperger’s, but he did say that one thing we both scored her very high on, was sensory. He believes she has Sensory Integration Disorder (SID). This could explain why she doesn’t like to be hugged; it could explain why she’s a picky eater. It could explain a lot of things.
What happens next? The school OT (occupational therapist) will evaluate her for sensory integration. He said using the school OT would likely be the quickest, least expensive way of having her tested. And, being done in the school system, it will give records that may be helpful in the future.
Since SID is a neurological disorder, she can do OT to help her overcome the sensory issues. He told me about a place, here in town, which comes highly recommended.
Also, he added, working on the SID may help with the anxiety. He gave the example: Imagine her being at school all day, worried to death that someone is going to touch her, or hug her, or maybe there will be a loud noise. For a kid that already has anxiety, this can be torture on a daily basis.
We talked about the meds. I had told him before that the first 2 weeks on meds were amazing. She was a completely different child. She actually went to the board, at school, twice in the first week. The third week, we took a nose dive. He explained that the dosage may need to increase. Again, I expressed my concerns about the meds, and wasn’t sure if being on meds is the right thing to do. He assured me the meds were a good thing to keep her anxiety at bay. Okay. We go this Friday to the family doc to see what he says about dosage. I’m still very nervous.
Since I started this post, and put it on the back burner, we have discontinued our visits with the therapist. We’re still waiting for the evaluation from the OT, and depending on what that shows, we will decide how to proceed from there. The medication dosage remains as it is. I told the pediatrician we would see how things go once school has started. So far, Mya is doing great, she loves her new teacher, and has come home in a good mood every day. I’m keeping my fingers crossed.
TTFN
Based on what Bob and I answered, he doesn’t think she has Asperger’s, but he did say that one thing we both scored her very high on, was sensory. He believes she has Sensory Integration Disorder (SID). This could explain why she doesn’t like to be hugged; it could explain why she’s a picky eater. It could explain a lot of things.
What happens next? The school OT (occupational therapist) will evaluate her for sensory integration. He said using the school OT would likely be the quickest, least expensive way of having her tested. And, being done in the school system, it will give records that may be helpful in the future.
Since SID is a neurological disorder, she can do OT to help her overcome the sensory issues. He told me about a place, here in town, which comes highly recommended.
Also, he added, working on the SID may help with the anxiety. He gave the example: Imagine her being at school all day, worried to death that someone is going to touch her, or hug her, or maybe there will be a loud noise. For a kid that already has anxiety, this can be torture on a daily basis.
We talked about the meds. I had told him before that the first 2 weeks on meds were amazing. She was a completely different child. She actually went to the board, at school, twice in the first week. The third week, we took a nose dive. He explained that the dosage may need to increase. Again, I expressed my concerns about the meds, and wasn’t sure if being on meds is the right thing to do. He assured me the meds were a good thing to keep her anxiety at bay. Okay. We go this Friday to the family doc to see what he says about dosage. I’m still very nervous.
Since I started this post, and put it on the back burner, we have discontinued our visits with the therapist. We’re still waiting for the evaluation from the OT, and depending on what that shows, we will decide how to proceed from there. The medication dosage remains as it is. I told the pediatrician we would see how things go once school has started. So far, Mya is doing great, she loves her new teacher, and has come home in a good mood every day. I’m keeping my fingers crossed.
TTFN
Wednesday, April 9, 2014
At Last, We Have Answers!
Since Mya was about 4 years old, I knew something wasn’t quite right. She was unusually shy, and had quit showing affection toward me, and others. At first I fluffed it off as her being around adults, mostly, and not being comfortable in her peer group. I assumed it would get better when she started school. Kindergarten wasn’t better. 1st grade was horrible, and by 2nd grade, she started losing weight and her hair was falling out. Last year I mentioned my concerns to her doctor, and we just took the wait and see approach. This past fall, when her hair started falling out, the wait and see was over. I told the doctor I wanted her checked out, to rule out anything medical that might be causing the sudden hair and weight loss, and if everything came back okay, I wanted a referral to have her evaluated. Mya was down to 50 pounds, and her hair had thinned significantly. Finally, we had an appointment at the Weisskopf Center in Louisville.
Before our visit, I made a list of observations, explaining various behaviors I was seeing at home. Each year in school, I asked the teachers if they noticed anything odd, or out of the ordinary, only to be told Mya was a good kid, and got along well with others. Hmmm… There was a time I was beginning to wonder if maybe it was me. If I was seeing all these quirky behaviors, and the teachers weren’t, maybe it’s me. Well, this year, when I again mentioned it to her teachers, her all day teacher assured me she was fine. Her Math teacher, on the other hand, said she noticed it almost immediately. I spent a lot of time talking to her Math teacher, and when we prepared for the evaluation, it was the Math teachers input that I used for the “teacher questionnaire”. I received a packet from the Weisskopf Center, and there was a letter for me, instructing me to go online and complete a behavioral form, and there was a letter for her teacher, to do the same. Since I was getting zero information from her all day teacher, I decided to give the letter to her math teacher. When we went for the evaluation, the doctor told me the teacher and I were seeing the exact same behaviors. Not that I want anything to be wrong with my child, but I was so happy to hear those words. I had confirmation. I’m not crazy, or over protective. Then I became angry because had the teachers been honest with me in the past, we could have gotten her help sooner.
The day of the evaluation was long, and exhausting. I’m a talker, and I do believe I wore myself out talking that day. The doctor met with me first, and we talked about everything. Then she met with Mya, and then back with me again.
After talking to Mya, the doctor discovered that Mya has a very low body image, and would like to change many things about her appearance. She thinks she’s fat. Mya feels like she’s not good enough, and she feels she’s a bad person. My heart broke in two. The doctor was very concerned about Mya’s body image issues, not so much for now, but for in a few years, when puberty and body changes start to happen. This will have to be monitored closely so that it doesn’t escalate in the future.
Mya was officially diagnosed with general and social anxiety. She doesn’t want people to look at her. If you see us out, and speak to her, she will not respond. The doctor said we may even notice that she may lie from time to time, but only to tell us what she thinks we want to hear, not to be devious. This is a reaction of her feeling like she’s not good enough, or a bad person. If she lies, and tells us what she thinks we want to hear, in her mind, she thinks it will make her look like a better person.
When we left the doctors office, and were driving home, I asked her if they played games, or just talked. At first she ignored me, which is a sign that she doesn’t want to talk about it. Later, she mentioned something about the visit, so I brought it up again, and she burst into tears. When the doctor took her back, to talk to her, she thought she was in time out. The doctor told her where to sit, and Mya thought it was a time out chair, and she was in trouble. This type of meltdown I’m so used to dealing with. You have to be really careful what you say, because you never know how she’s going to take it. The doctor explained that people with anxiety issues will always grab the negative of a situation. The doctor explained so much about anxiety, and how it affects people. The list of behaviors I took with me made so much more sense.
We started anxiety medication this past Sunday, and on the 25th we will start seeing a therapist. From what I was told, the therapist will give her tools to help her cope and deal with the anxiety. I’m very hopeful.
On a positive note! Yesterday, Mya actually sang with me, in the car. She’s never done that, and in the past would never allow anyone to hear her sing. She was on the honor roll again, for this 9 weeks, and went in front of the crowd to receive her award. Mom asked me this morning if I’ve noticed any changes since the medication, and I told her that I’ve seen small changes, and she said for the first time in forever, Mya hugged her when she came home. My heart is so full of joy to see these wonderful, small things that mean so much. If we’ve seen this much change in a few days, imagine where we’ll be in a month!
Lesson for the day: You know your child, and you know when something isn’t right. If you have the means, push, push, push until you get answers. It’s been a long 3, going on 4, years, but I kept talking and asking questions, and finally, we have answers.
At last, maybe the world will be able to see just how wonderful, funny, and smart Mya is, and not just hear about her in my postings.
Before our visit, I made a list of observations, explaining various behaviors I was seeing at home. Each year in school, I asked the teachers if they noticed anything odd, or out of the ordinary, only to be told Mya was a good kid, and got along well with others. Hmmm… There was a time I was beginning to wonder if maybe it was me. If I was seeing all these quirky behaviors, and the teachers weren’t, maybe it’s me. Well, this year, when I again mentioned it to her teachers, her all day teacher assured me she was fine. Her Math teacher, on the other hand, said she noticed it almost immediately. I spent a lot of time talking to her Math teacher, and when we prepared for the evaluation, it was the Math teachers input that I used for the “teacher questionnaire”. I received a packet from the Weisskopf Center, and there was a letter for me, instructing me to go online and complete a behavioral form, and there was a letter for her teacher, to do the same. Since I was getting zero information from her all day teacher, I decided to give the letter to her math teacher. When we went for the evaluation, the doctor told me the teacher and I were seeing the exact same behaviors. Not that I want anything to be wrong with my child, but I was so happy to hear those words. I had confirmation. I’m not crazy, or over protective. Then I became angry because had the teachers been honest with me in the past, we could have gotten her help sooner.
The day of the evaluation was long, and exhausting. I’m a talker, and I do believe I wore myself out talking that day. The doctor met with me first, and we talked about everything. Then she met with Mya, and then back with me again.
After talking to Mya, the doctor discovered that Mya has a very low body image, and would like to change many things about her appearance. She thinks she’s fat. Mya feels like she’s not good enough, and she feels she’s a bad person. My heart broke in two. The doctor was very concerned about Mya’s body image issues, not so much for now, but for in a few years, when puberty and body changes start to happen. This will have to be monitored closely so that it doesn’t escalate in the future.
Mya was officially diagnosed with general and social anxiety. She doesn’t want people to look at her. If you see us out, and speak to her, she will not respond. The doctor said we may even notice that she may lie from time to time, but only to tell us what she thinks we want to hear, not to be devious. This is a reaction of her feeling like she’s not good enough, or a bad person. If she lies, and tells us what she thinks we want to hear, in her mind, she thinks it will make her look like a better person.
When we left the doctors office, and were driving home, I asked her if they played games, or just talked. At first she ignored me, which is a sign that she doesn’t want to talk about it. Later, she mentioned something about the visit, so I brought it up again, and she burst into tears. When the doctor took her back, to talk to her, she thought she was in time out. The doctor told her where to sit, and Mya thought it was a time out chair, and she was in trouble. This type of meltdown I’m so used to dealing with. You have to be really careful what you say, because you never know how she’s going to take it. The doctor explained that people with anxiety issues will always grab the negative of a situation. The doctor explained so much about anxiety, and how it affects people. The list of behaviors I took with me made so much more sense.
We started anxiety medication this past Sunday, and on the 25th we will start seeing a therapist. From what I was told, the therapist will give her tools to help her cope and deal with the anxiety. I’m very hopeful.
On a positive note! Yesterday, Mya actually sang with me, in the car. She’s never done that, and in the past would never allow anyone to hear her sing. She was on the honor roll again, for this 9 weeks, and went in front of the crowd to receive her award. Mom asked me this morning if I’ve noticed any changes since the medication, and I told her that I’ve seen small changes, and she said for the first time in forever, Mya hugged her when she came home. My heart is so full of joy to see these wonderful, small things that mean so much. If we’ve seen this much change in a few days, imagine where we’ll be in a month!
Lesson for the day: You know your child, and you know when something isn’t right. If you have the means, push, push, push until you get answers. It’s been a long 3, going on 4, years, but I kept talking and asking questions, and finally, we have answers.
At last, maybe the world will be able to see just how wonderful, funny, and smart Mya is, and not just hear about her in my postings.
Wednesday, March 26, 2014
What is Rheumatoid Arthritis, or RA?
Web MD describes it as such:
Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.
What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.
I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.
Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.
I started on Methotrexate (MTX), initially. Methotrexate is described as:
METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.
I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.
Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!
After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.
I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.
The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.
Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)
Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.
Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.
Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.
People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.
Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.
Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.
I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.
My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.
TTFN
Web MD describes it as such:
Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.
What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.
I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.
Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.
I started on Methotrexate (MTX), initially. Methotrexate is described as:
METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.
I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.
Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!
After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.
I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.
The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.
Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)
Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.
Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.
Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.
People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.
Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.
Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.
I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.
My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.
TTFN
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