I am getting tested for Multiple Sclerosis(MS) on Friday. Thankfully it is just a preliminary brain scan. If something shows up on it, then I will have to have the spinal tap. At least I don't have to have that tap first. So far, my symptoms are generally stumping every doctor we come in contact with. My latest neurologist is the one recommending the test for MS. I'm sorry all of my posts have been about medical issues. If I had something more interesting to talk about, I would. I have gotten out of the house a couple of time to visit my friend Sarah Denley and her precious family. What makes me feel better?? Babies. Honestly, they are such a balm to my soul. Besides doctor's appointments, that's about it!
Do you ever have some point that you are trying to convey and no matter how you say, nobody is understanding you? I feel like I'm speaking mandarin and everyone else is speaking english. Sometimes I say something and my parents look at me like, "duhhh.." It's so frustrating to not be understood. I have to weigh the costs of what I want to say, because, generally if I say it, it will start a fight. We do not communicate well. If I could have a clear conversation with them, it would be to say that I am doing the best that I can right now. It may seem that laying on the couch in my pajamas and not getting out the house is a little depressing and pathetic, but so far, that's all I can do. My body is so wrapped up in fighting all of the pain and autoimmune crap, that it leaves me with almost no energy for anything else. So I'm either dealing with pain or exhaustion 24/7, this makes me not care that I am in my pajamas all day. Who wouldn't want to be! I mean wearing a dress & curling my hair is nice in theory, but why do it to just lay around all day. This is where my parents and I begin to differ on opinions.
I promise I am working on a fun light-hearted post, but it is just taking more time to put together than me just writing a post, telling you what's on my heart.
So my title question was, "What makes you feel better?" Maybe it's prayer, or someone holding your hand, or a friend just coming over to chat, or a stuffed animal named Henry (oops, gave away my secret). I say hold on to those things that are precious to you. It's okay to do what you need to do, to feel better. Your body and your heart generally know without much thought, what it would take to make them feel better. Don't be afraid to trust that intuition and follow if (if that makes sense.)
Until later!
SA
Wednesday, May 4, 2011
Wednesday, April 6, 2011
Claustrophia
I knew today was going to be long when I got to my doctor's appt and they asked me if I had any metal plates in my body or if I was claustrophobic. If you don't know what those two things mean, let me show you with this cartoon I found. I had two MRI's done today on my hip/pelvic joints and lower back.
The nurses first strips me of any metal, gave me a sexy/drafty paper gown (that went perfectly with my snowman socks), got me to lay like broccoli on a plastic bed with my head between two foam blocks. The nice nurse then handed me two hunter's orange foam ear plugs AND ear muffs (both of which are a foreshadowing to something that can't be good) and tells me that I cannot move for the next 15 minutes. Then proceeds to slide my plastic bed into a hole hardly big enough for my body. It can only be described as being in a coffin with the lid shut. The bed was at my back, my arms were brushing up against each side, and the top, with its track lights running the length of it, was mere inches from my sweet little nose. I thought to myself, "deep breaths, sing a few songs, I can do this, pssht..no big deal." Then...The Road Construction Crew Symphony begin playing in surround sound and I knew I was doomed.
The noise of the MRI machine started out as a soothing, albeit loud, hum with occasional thumping. Then it blended into a combination of electronic beeps that made me feel like we were making some kind of contact with Mars, followed by what can only be described as Heavy Metal mixed with a collection of power tools. There were horns, jackhammers, alarms, wailing guitars, sci-fi blips, and industrial percussion, all swallowed up by a jet engine. In order to keep my sanity and not make a fool out of myself in my paper prom dress, I started making up words to go with the rhythmic noises. There was the obligatory, "Luke, I am your father.", "I'll be back.", "E.T., Phone home." and then I sang some songs, but I'm not a singer and so several of my favorite hymns got merged into one (I'm just glad that Kesha song that has been in my head for weeks managed to stay out of the MRI! I hate that song). This test lasted for 15 minutes, but honestly felt like an eternity in that small hole.
On a serious note, it did give me the chance to pray for a sweet family I know that is dealing with a really hard time. Their baby was born 5 weeks early due to complications and has diminished brain activity. He is a couple of months old now and his brain is basically dying. He cannot suck or swallow. The doctor's say it's only a matter of time now. They baptized him in the hospital yesterday. So, it was easy to pass the time when I was thinking about all of the things that this family is having to process right now. If you get the chance, please say a prayer for baby Baker and his family.
The second MRI seemed to go a lot faster than the first, and just like that I was done! They are going to send the results to my doctor's office and hopefully we will have them read to us tomorrow when we go for my Rheumatologist appt. This is a new guy, I like my old Rheumy dr., but I need to get a second opinion, plus if this guy speaks better english than the old one, it will be like Christmas! (haha) My dad and I sat down tonight and made a list of my complaints & issues. Boy, was that list too long! Not acceptable. :) We gotta start knocking some stuff off. Obviously, my main issue is the constant leg pain, weakness & fatigue. Those are the things that are keeping me couch bound. Hopefully, he will have an AHA! moment (sorry to quote Oprah on that one) and immediately see a way that he could make it better. Wouldn't that be awesome!
So tomorrow is a big day, and I have to wake up early :( anyway. More posts to come...
<><
Monday, April 4, 2011
Pain
Webster's Definition of Pain
Pain: (noun)- acute physical, mental or emotional distress or suffering.
It's a basic summary of a really long and wordy definition, but you get the picture. Pain is something that we all have in common. We may not have all experienced the same pain, but we know what is and feels like and we generally try to avoid it at all costs. I've seen some of my friends suffer from miscarriages, the loss of a child or parent. There have been divorces, broken legs, car wrecks, hurtful gossip among friends. A person doesn't have to be bleeding to be in a pain. A lot of times we are around someone who is in pain, but we don't know it because there isn't a cast or a flashing sign above their head that flashes: "Hurting Person Here" over and over again. A lot of times I have been in pain and no one knows it. I know y'all have had days like that too. It's just the way life goes sometimes.
I can't tell you how many times I wish that I had a sign above my head that explained what I was going through. It wouldn't be because I wanted pity, but a little compassion and sympathy would be nice. I have what I like to call the invisible diseases. When you look at me, my skin is a healthy albeit pale pink; I'm not grossly over or under (I wish!) weight, I walk without a limp, talk without a stutter and until recently functioned fairly well. Unless I chose to tell someone about my diseases, then no one would be the wiser. Let me tell you, that was and is a lonely place to be. I don't like telling people about what I have, because I don't want them to think I am asking for pity. Compassion yes, pity no.
Right now I would say that I am dealing with a great deal of physical pain & mental & emotional stress.
I had to go to the Emergency Room the other night. I hate it when the pain gets so bad that nothing makes it better. It was an interesting night. First, the doctor's won't administer pain meds unless you have someone with you who will take responsibility for you. This meant I had to ask one of my parents to go with me. This isn't too big of a problem, but then the other parent wanted to come. Now it looked like it was going to be a great big family party at the ER. (Joy!) We loaded up and went to the local hospital. Basically, the Indian man took one, maybe two glances at me, glanced over my symptoms and said (picture an indian accent) "We cannot offer you the proper care here. I am going to recommend transferring her to (a bigger hospital in the next city). They have a rheumatologist on call there, that you can see." We thought (naively) "great!", a rheumatologist, maybe we can get a second opinion on all of my diagnosis'.
Anyway, we get to the "bigger hospital", that I must describe as not being in the best part of town. First, there are a scary group of thugs sitting in the waiting room like it was a family reunion. I'm not sure who was there to receive treatment, but the 7 or 8 people sitting in the waiting room were having a grand time. Soda, cheetos, and funny stories galore. So, as my parents and I are sitting gingerly on the other side of the room, in our sticky pleather chairs, the nurse calls me back to get my vitals and take me to a room. After that, I have to walk thru a metal detector, with 3-4 police officers on the other side who at first looked like they were going to pat us down, but then took pity on us and let us thru. I walk down the hall, behind the nurse. I pass an empty gurney with bloody sheets on it, then a room with loud screaming. Turns out, they were treating several stabbing victims and several hit and runs. (I felt very safe and reassured at this time). After we sit behind a curtain for about 30 minutes, a doctor comes in who tells me there has never been a rheumatologist on call at the hospital (boy, did we feel stupid) and he could offer me pain medicine. I said ok! I was desperate at this point. So another 20 minutes passes and this guy, who looks like he could be a member of the Hells Angels motorcycle gang walks in, with NEEDLES! He was apparently here to deliver my pain medication. He starts ripping & spitting, tearing & squirting & sticking. He would rip a package open with his mouth, spit the torn paper on the floor. He did this with every tube, needle, and syringe package. Then he would put the med in the syringe & squirt some of it off to the side against the curtain before he jammed it in my central line. ( I seriously would not want to mess with this guy in a dark alley, or a lit alley for that matter). Anyway, at this point, I was just happy for the drugs. I also failed to mention that I never go to the hospital at reasonable hours. We were ER'ing it up from 11 pm-4:15 am. It was spectacular (sarcasm).
I must say as I wrap up this delightful post, that I am so grateful for my parents and even though I'm sure they are frustrated, and tired, and dealing with their own stuff, they were there for me and took me to the hospital. Not many people would put up with all the stuff my illnesses put out, but they are consistently there. I don't know what I would do without them.
I rambled on about my hospital visit and didn't talk about the emotional & spiritual pain. Those are good topics too. So maybe another post at a later date.
LOVE!<><
Pain: (noun)- acute physical, mental or emotional distress or suffering.
It's a basic summary of a really long and wordy definition, but you get the picture. Pain is something that we all have in common. We may not have all experienced the same pain, but we know what is and feels like and we generally try to avoid it at all costs. I've seen some of my friends suffer from miscarriages, the loss of a child or parent. There have been divorces, broken legs, car wrecks, hurtful gossip among friends. A person doesn't have to be bleeding to be in a pain. A lot of times we are around someone who is in pain, but we don't know it because there isn't a cast or a flashing sign above their head that flashes: "Hurting Person Here" over and over again. A lot of times I have been in pain and no one knows it. I know y'all have had days like that too. It's just the way life goes sometimes.
I can't tell you how many times I wish that I had a sign above my head that explained what I was going through. It wouldn't be because I wanted pity, but a little compassion and sympathy would be nice. I have what I like to call the invisible diseases. When you look at me, my skin is a healthy albeit pale pink; I'm not grossly over or under (I wish!) weight, I walk without a limp, talk without a stutter and until recently functioned fairly well. Unless I chose to tell someone about my diseases, then no one would be the wiser. Let me tell you, that was and is a lonely place to be. I don't like telling people about what I have, because I don't want them to think I am asking for pity. Compassion yes, pity no.
Right now I would say that I am dealing with a great deal of physical pain & mental & emotional stress.
I had to go to the Emergency Room the other night. I hate it when the pain gets so bad that nothing makes it better. It was an interesting night. First, the doctor's won't administer pain meds unless you have someone with you who will take responsibility for you. This meant I had to ask one of my parents to go with me. This isn't too big of a problem, but then the other parent wanted to come. Now it looked like it was going to be a great big family party at the ER. (Joy!) We loaded up and went to the local hospital. Basically, the Indian man took one, maybe two glances at me, glanced over my symptoms and said (picture an indian accent) "We cannot offer you the proper care here. I am going to recommend transferring her to (a bigger hospital in the next city). They have a rheumatologist on call there, that you can see." We thought (naively) "great!", a rheumatologist, maybe we can get a second opinion on all of my diagnosis'.
Anyway, we get to the "bigger hospital", that I must describe as not being in the best part of town. First, there are a scary group of thugs sitting in the waiting room like it was a family reunion. I'm not sure who was there to receive treatment, but the 7 or 8 people sitting in the waiting room were having a grand time. Soda, cheetos, and funny stories galore. So, as my parents and I are sitting gingerly on the other side of the room, in our sticky pleather chairs, the nurse calls me back to get my vitals and take me to a room. After that, I have to walk thru a metal detector, with 3-4 police officers on the other side who at first looked like they were going to pat us down, but then took pity on us and let us thru. I walk down the hall, behind the nurse. I pass an empty gurney with bloody sheets on it, then a room with loud screaming. Turns out, they were treating several stabbing victims and several hit and runs. (I felt very safe and reassured at this time). After we sit behind a curtain for about 30 minutes, a doctor comes in who tells me there has never been a rheumatologist on call at the hospital (boy, did we feel stupid) and he could offer me pain medicine. I said ok! I was desperate at this point. So another 20 minutes passes and this guy, who looks like he could be a member of the Hells Angels motorcycle gang walks in, with NEEDLES! He was apparently here to deliver my pain medication. He starts ripping & spitting, tearing & squirting & sticking. He would rip a package open with his mouth, spit the torn paper on the floor. He did this with every tube, needle, and syringe package. Then he would put the med in the syringe & squirt some of it off to the side against the curtain before he jammed it in my central line. ( I seriously would not want to mess with this guy in a dark alley, or a lit alley for that matter). Anyway, at this point, I was just happy for the drugs. I also failed to mention that I never go to the hospital at reasonable hours. We were ER'ing it up from 11 pm-4:15 am. It was spectacular (sarcasm).
I must say as I wrap up this delightful post, that I am so grateful for my parents and even though I'm sure they are frustrated, and tired, and dealing with their own stuff, they were there for me and took me to the hospital. Not many people would put up with all the stuff my illnesses put out, but they are consistently there. I don't know what I would do without them.
I rambled on about my hospital visit and didn't talk about the emotional & spiritual pain. Those are good topics too. So maybe another post at a later date.
LOVE!<><
Thursday, March 31, 2011
You have what?!
So to catch you up on two decades worth of medical issues that I'm sure you are dying to know (sarcasm). I was generally healthy the first 7 years of my life, I started having stomachaches when I was about 8 that evolved over the next 19 years into headaches, followed by muscle pain, anxiety, foot pain, kidney stones, gall stones..etc. I had diagnosis' of Irritable Bowel Syndrome, Migraines, Fibromyalgia, General Anxiety Disorder, Chronic Fatigue Syndrome, Plantar Fasciitis,..and for some issues, there were no diagnosis' and some were just good guesses.
Over Christmas 2010, I was finally diagnosed with three things that I think are finally the right answers! (yay!) All of the things the doctors said were in the Autoimmune diseases category.
The best way to explain an autoimmune disease is that a normal immune system has an army of white blood cells that help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and blood or tissue from another person. The immune system produces antibodies to destroy these harmful substances. In people like me, who have an autoimmune disorder, our immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. This response is a hypersensitivity reaction similar to the response in allergies. In allergies, the immune system reacts to an external substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues. No one really knows what causes the immune system to no longer tell the difference between healthy body tissues and antigens.
My three autoimmune diseases or "friends" as I call them are:
1. Hashimoto's Thyroiditis - This is when the immune system attacks and destroys the thyroid. Once it is dead or not producing enough of the thyroid hormone, you are classified as having hypothyroidism. Hypothyroidism is fairly common in middle-aged and older women (I tread carefully here because of the age reference (: ) This is treated with medicine. Until the right dosage of medicine is attained, it can cause weight gain, fatigue, hair loss, joint pain. (There are more, but I figure you are catching on). If you want to read more click on this link.
Hashimoto's Thyroiditis
2. Sjogren's Syndrome - This is when the immune system attacks and destroys the salivary and tear producing glands. It can also affect different parts of the body including the kidneys and lungs. It has a whole host of fun (sarcasm) symptoms, that I feel weird listing out.
Sjogren's Syndrome
3. Systemic Lupus Erythematosus - This is more commonly known as Lupus. It is when the immune system affects the entire body's healthy tissue and cells causing chronic inflammation and pain.
Systemic Lupus Erythematosus
The bad news: My three new friends are with me for life.
The good news: It's nice to finally have some real answers and it's all manageable with the right medications and treatment.
Stay tune for post 3...the naming of the blog.
Over Christmas 2010, I was finally diagnosed with three things that I think are finally the right answers! (yay!) All of the things the doctors said were in the Autoimmune diseases category.
The best way to explain an autoimmune disease is that a normal immune system has an army of white blood cells that help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and blood or tissue from another person. The immune system produces antibodies to destroy these harmful substances. In people like me, who have an autoimmune disorder, our immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. This response is a hypersensitivity reaction similar to the response in allergies. In allergies, the immune system reacts to an external substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues. No one really knows what causes the immune system to no longer tell the difference between healthy body tissues and antigens.
My three autoimmune diseases or "friends" as I call them are:
1. Hashimoto's Thyroiditis - This is when the immune system attacks and destroys the thyroid. Once it is dead or not producing enough of the thyroid hormone, you are classified as having hypothyroidism. Hypothyroidism is fairly common in middle-aged and older women (I tread carefully here because of the age reference (: ) This is treated with medicine. Until the right dosage of medicine is attained, it can cause weight gain, fatigue, hair loss, joint pain. (There are more, but I figure you are catching on). If you want to read more click on this link.
Hashimoto's Thyroiditis
2. Sjogren's Syndrome - This is when the immune system attacks and destroys the salivary and tear producing glands. It can also affect different parts of the body including the kidneys and lungs. It has a whole host of fun (sarcasm) symptoms, that I feel weird listing out.
Sjogren's Syndrome
3. Systemic Lupus Erythematosus - This is more commonly known as Lupus. It is when the immune system affects the entire body's healthy tissue and cells causing chronic inflammation and pain.
Systemic Lupus Erythematosus
The bad news: My three new friends are with me for life.
The good news: It's nice to finally have some real answers and it's all manageable with the right medications and treatment.
Stay tune for post 3...the naming of the blog.
So it begins...
So this may or may not be my 4th attempt at creating a blog. I love the idea of a blog and actually follow several blogs, but
1. I don't think I'm that interesting.
2. I don't have the best memory (so I'm not sure how remembering to blog is going to work out.)
3. What am I supposed to say on here and how often? I feel like it's a junior high dance all over again and I wore my flat sandals and everyone else wore heels.
Do I write an about me? Does anyone care that I have 3 grandparents, a mom, dad, brother & sister-in-law?
What if what I have to say isn't either interesting or funny? That's a lot of pressure. Is there cyber-judging?
Ok, deep breath, I guess I'm diving in. (pardon the grammatical errors, I don't remember what the rules are about comma placement or ending a sentence in a preposition. I'll try to make up for it in content).
I started this blog (as opposed to the other ones) with the intention of documenting my medical journey. And because my everything is wrapped up in my medical journey, I'm sure you will be getting updates on my spiritual and emotional journey too. Don't worry, it won't be all sap. I hope to keep you up to date on what it's like to be almost 30 and moving back in with your parents, as well. (oh YES! At least it's not a basement).
I should write a disclaimer: I am sarcastic. I try to never be sarcastic in regards to a person, because I don't want them to take it seriously and get their feelings hurt (but it happens anyway). There will be sarcasm a plenty in here I'm sure, but I will try to make it obvious. :)
Next post might be a little dry, bear with me because it explains a lot...
1. I don't think I'm that interesting.
2. I don't have the best memory (so I'm not sure how remembering to blog is going to work out.)
3. What am I supposed to say on here and how often? I feel like it's a junior high dance all over again and I wore my flat sandals and everyone else wore heels.
Do I write an about me? Does anyone care that I have 3 grandparents, a mom, dad, brother & sister-in-law?
What if what I have to say isn't either interesting or funny? That's a lot of pressure. Is there cyber-judging?
Ok, deep breath, I guess I'm diving in. (pardon the grammatical errors, I don't remember what the rules are about comma placement or ending a sentence in a preposition. I'll try to make up for it in content).
I started this blog (as opposed to the other ones) with the intention of documenting my medical journey. And because my everything is wrapped up in my medical journey, I'm sure you will be getting updates on my spiritual and emotional journey too. Don't worry, it won't be all sap. I hope to keep you up to date on what it's like to be almost 30 and moving back in with your parents, as well. (oh YES! At least it's not a basement).
I should write a disclaimer: I am sarcastic. I try to never be sarcastic in regards to a person, because I don't want them to take it seriously and get their feelings hurt (but it happens anyway). There will be sarcasm a plenty in here I'm sure, but I will try to make it obvious. :)
Next post might be a little dry, bear with me because it explains a lot...
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