Well I received my second "care" package today (medical supplies). I also feel like real doo doo - yes as opposed to fake! So I guess this is all real. Blah. I feel like a kid trapped in an 80 year old body. You know when you have the flu you can usually count the days until you will feel better. This morning I thought, Hhmm when will that day be? I'm only feeling worse. I don't have ANY energy. Everything wears me out. I hurt from head to toe. I don't want to be touched at all. It just hurts too much. I feel like I can't breathe. I did manage to take a shower today! Yea me...and yea Chris! Haha Poor Chrissy...he has taken over most household duties. Well all I guess...not most. Today he was doing laundry. Oh how I hate to see that. He said there seems to have been a role reversal in our marriage. Awwww. All I can manage to do is to get out of bed, sit on the couch, and go back to bed. Exciting! I hate not being able to participate in anything. I love being a mom and a wife. I hate being a couch potato. I keep telling myself this is only temporary. Lord, let it be true!
Since I don't get out much I'm always happy to see people! Mom comes over often which we all LOVE! It gives Chris a break from running around playing chase. Rob, our bestest friend, has been over a couple times this week. He's like part of the family, so it's good to just have him hanging around. He makes me laugh!
Speaking of laughs, Brayden, Brayden, Brayden! Yesterday, he was in his playroom which is within our sight. Chris and I were talking and all of a sudden I look up and he is standing, yes standing, on our little bistro table. Chris grabbed the camera and took his picture. He's such a little ham, he just stood there and posed! He is quite entertaining. Who needs a TV when you have him around?!?!
Today I received my first Humana statement in the mail since I started treatment. The only thing that is on this statement is the initial Lyme testing. Almost $1300 for the bloodwork at the lab! Geeeeeeez! I can only imagine what my little care packages will cost us...plus my nurse???? Not looking forward to those bills. Sigh.
Well I'm pretty tired so I will cut this short tonight. Thank you all for your well wishes and continued support. If you haven't already, please check out our group page as Chris will have updates there as well. Here is the link... http://www.facebook.com/#!/groups/274086509356429/
Blessings!
Thursday, May 31, 2012
Tuesday, May 29, 2012
LYME SHLYME
Since May is Lyme Disease Awareness Month, I thought I would share some information on Lyme, itself. Prepare to be amazed!
WHAT IS LYME?
Lyme is an infectious disease caused by the spirochete, Borrelia burgdorferi (Bb). It results from a tick bite. Ticks are also known to carry other parasites. Along with Lyme disease, ticks can cause other co-infections such as Babesiosis, Ehrlichiosis and Bartonella. Symptoms for these infections are quite similar to Lyme itself. Lyme is diagnosed mostly on a clinical basis, because lab tests are not 100% reliable and tend to show many false negatives....especially in patients with Chronic Lyme - infected with Lyme for more than 6 months. Basically Lyme suppresses the immune system and creates havoc in every body system. The longer you have Lyme - undiagnosed - the more symptoms you will see...especially neurological.
DIAGNOSING LYME
The diagnosis of Lyme is mainly a clinical one as lab tests are highly insensitive and the timing has to be just right. If you are bitten by a tick, sometimes a bulls eye rash will appear. But this occurs in less than 50% of people. It may occur anywhere from 4 days to several weeks after the bite, IF it happens at all. If it does, it is important that you seek medical attention and receive antibiotics! Do not wait for test results to confirm the diagnosis because blood tests (ELISA, western blot, etc) do not usually show positive results for several weeks after the tick bite occurred. You should not delay treatment as this is the time when the success rate is the highest.
Lyme Disease mimics many other diseases like Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Alzheimer's, Rheumatoid Arthritis and many more. All these conditions have similar symptoms like fever, malaise, fatigue, headache, muscle aches and joint pain. Thus the reason so many people are misdiagnosed before ever even being tested for Lyme Disease.
TESTING FOR LYME
This is where things get kind of rocky. A regular physician will order a typical Lyme test which will consist of an ELISA blood test. Based on this test result, testing will either continue or stop at the lab. If the ELISA is negative, all testing stops. If the ELISA test is positive, then the lab will perform the western blot test. This test will show which bands are reactive to Bb. Basically if you are infected with Bb. It tells specifically what you are infected with. Here it gets complicated so I will stop there!
The ELISA test is highly insensitive - only about 60% accurate. And remember, you have to be tested at precisely the right time in order for the test to be accurate. So basically the stars have to all line up exactly!
In my case, the ELISA test was negative so the western blot was not performed. Luckily, I had educated myself and was unwilling to stop there. I demanded a western blot - yes, you CAN MAKE DEMANDS when it comes to YOUR health care! Thank you Mom for this very important life lesson! So the western blot is what showed that I do indeed have Lyme disease.
Again, Lyme disease requires more of a clinical diagnosis. So a good doctor will look at your symptoms as well and not just rely on lab results.
There are also several other tests out there for Lyme disease such as the PCR and CD-57. Normally, only a Lyme Literate Doctor will run these tests as they are familiar with understanding the results.
TREATMENT OF LYME DISEASE
After a tick bite, Bb can be found in the central nervous system within 12 hours. 12 hours!! This is why it is so important to receive treatment immediately with antibiotics! The longer a patient has been sick with Lyme before treatment begins, the longer the treatment will need to be, and the need for aggressive treatment increases.
If treatment begins within a few days after a tick bite, a normal course of antibiotics of about 2 weeks is generally given.
If Lyme disease goes undiagnosed for any length of time - greater than 4 weeks - a more aggressive approach is typically needed, i.e. IV antibiotics.
There is quite a controversy in the Lyme world on how Lyme Disease should be treated. According to guidelines written by IDSA (Infectious Disease Society of America), all Lyme Disease patients should be treated with 2-4 weeks of antibiotics - no matter the duration of the disease. So if the patient has gone undiagnosed/misdiagnosed for 10 years and suddenly receives a Lyme diagnosis, 2 weeks of antibiotics should fix them right up! Can you imagine?!?! Lyme is the only infectious disease that is not treated long term - per IDSA guidelines. Syphilis, Hepatitis, Tuberculosis, HIV, MRSA....to name a few...all treated with long term antibiotics over a period of several months or even years. Sadly, these are the treatment guidelines that most insurance companies follow. So if a patient suffers from chronic Lyme, some insurance companies may refuse to pay for ANY antibiotics or treatment outside of this initial two week period. Again...can you imagine?!?! All I can surmise is that the members of this board have never had any family members or close friends contract Lyme. Also, this board was asked to write these guidelines to be used for insurance purposes. Things that make you go hhmmmm.
On the other side of the controversy stand LLMDs (Lyme Literate Doctors) and patients who have/do suffer with Lyme disease. Some who have gone undiagnosed for many years. ILADS (International Lyme and Associated Diseases Society) treatment guidelines recommends treatment for symptomatic presentation - again Lyme disease is more of a clinical diagnosis. They also recommend that treatment should not be withheld based on lab testing - in the case of false negative results, longer course of antibiotic treatment and repeat antibiotics for recurrences.
Now finding a doctor to treat you according to the ILADS guidelines is extremely difficult. These doctors have been hauled before medical boards mostly by complaints from insurance companies - you see, they are spending THEIR money, and threatened with the loss of the medical license. Some have been forced to close up shop, relocate, or sadly stop practicing altogether. We need these LLMDs! They are the ones who "get it". They understand it, us. They have a true passion for treating and helping the sick and suffering. These are the real heroes of the medical world! Without them so many would still be wondering, worrying and wounded.
In order to find a Lyme Literate Doctor you have to go underground. You can't just google 'lyme doctor in Atlanta'. Trust me on this one! ;) This is how I found a doctor. First I watched "Under Our Skin" and decided I needed to see Dr. Jemsek. If you watch the film, you will understand! Anyhow, I joined 2 online Lyme support forums. From there I had to give certain demographic information on the board to ensure I wasn't "phishing" or some undercover spy from the insurance world or medical world. After I passed that test, someone would Private Message me a list of names in my area/state. Then you're on your own. Talking about these doctors in public forums is frowned upon. We don't want to make ANY trouble for these docs! You can't google them. Some have websites but there won't be any information about how they treat Lyme disease. It's like a secret world or society. It's just crazy. This, folks, is our health care system! Our doctors have to secretly treat patients with Lyme Disease!
Here are some additional facts to enhance your knowledge!
Thanks for your continued support!
WHAT IS LYME?
Lyme is an infectious disease caused by the spirochete, Borrelia burgdorferi (Bb). It results from a tick bite. Ticks are also known to carry other parasites. Along with Lyme disease, ticks can cause other co-infections such as Babesiosis, Ehrlichiosis and Bartonella. Symptoms for these infections are quite similar to Lyme itself. Lyme is diagnosed mostly on a clinical basis, because lab tests are not 100% reliable and tend to show many false negatives....especially in patients with Chronic Lyme - infected with Lyme for more than 6 months. Basically Lyme suppresses the immune system and creates havoc in every body system. The longer you have Lyme - undiagnosed - the more symptoms you will see...especially neurological.
DIAGNOSING LYME
The diagnosis of Lyme is mainly a clinical one as lab tests are highly insensitive and the timing has to be just right. If you are bitten by a tick, sometimes a bulls eye rash will appear. But this occurs in less than 50% of people. It may occur anywhere from 4 days to several weeks after the bite, IF it happens at all. If it does, it is important that you seek medical attention and receive antibiotics! Do not wait for test results to confirm the diagnosis because blood tests (ELISA, western blot, etc) do not usually show positive results for several weeks after the tick bite occurred. You should not delay treatment as this is the time when the success rate is the highest.
Lyme Disease mimics many other diseases like Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Alzheimer's, Rheumatoid Arthritis and many more. All these conditions have similar symptoms like fever, malaise, fatigue, headache, muscle aches and joint pain. Thus the reason so many people are misdiagnosed before ever even being tested for Lyme Disease.
TESTING FOR LYME
This is where things get kind of rocky. A regular physician will order a typical Lyme test which will consist of an ELISA blood test. Based on this test result, testing will either continue or stop at the lab. If the ELISA is negative, all testing stops. If the ELISA test is positive, then the lab will perform the western blot test. This test will show which bands are reactive to Bb. Basically if you are infected with Bb. It tells specifically what you are infected with. Here it gets complicated so I will stop there!
The ELISA test is highly insensitive - only about 60% accurate. And remember, you have to be tested at precisely the right time in order for the test to be accurate. So basically the stars have to all line up exactly!
In my case, the ELISA test was negative so the western blot was not performed. Luckily, I had educated myself and was unwilling to stop there. I demanded a western blot - yes, you CAN MAKE DEMANDS when it comes to YOUR health care! Thank you Mom for this very important life lesson! So the western blot is what showed that I do indeed have Lyme disease.
Again, Lyme disease requires more of a clinical diagnosis. So a good doctor will look at your symptoms as well and not just rely on lab results.
There are also several other tests out there for Lyme disease such as the PCR and CD-57. Normally, only a Lyme Literate Doctor will run these tests as they are familiar with understanding the results.
TREATMENT OF LYME DISEASE
After a tick bite, Bb can be found in the central nervous system within 12 hours. 12 hours!! This is why it is so important to receive treatment immediately with antibiotics! The longer a patient has been sick with Lyme before treatment begins, the longer the treatment will need to be, and the need for aggressive treatment increases.
If treatment begins within a few days after a tick bite, a normal course of antibiotics of about 2 weeks is generally given.
If Lyme disease goes undiagnosed for any length of time - greater than 4 weeks - a more aggressive approach is typically needed, i.e. IV antibiotics.
There is quite a controversy in the Lyme world on how Lyme Disease should be treated. According to guidelines written by IDSA (Infectious Disease Society of America), all Lyme Disease patients should be treated with 2-4 weeks of antibiotics - no matter the duration of the disease. So if the patient has gone undiagnosed/misdiagnosed for 10 years and suddenly receives a Lyme diagnosis, 2 weeks of antibiotics should fix them right up! Can you imagine?!?! Lyme is the only infectious disease that is not treated long term - per IDSA guidelines. Syphilis, Hepatitis, Tuberculosis, HIV, MRSA....to name a few...all treated with long term antibiotics over a period of several months or even years. Sadly, these are the treatment guidelines that most insurance companies follow. So if a patient suffers from chronic Lyme, some insurance companies may refuse to pay for ANY antibiotics or treatment outside of this initial two week period. Again...can you imagine?!?! All I can surmise is that the members of this board have never had any family members or close friends contract Lyme. Also, this board was asked to write these guidelines to be used for insurance purposes. Things that make you go hhmmmm.
On the other side of the controversy stand LLMDs (Lyme Literate Doctors) and patients who have/do suffer with Lyme disease. Some who have gone undiagnosed for many years. ILADS (International Lyme and Associated Diseases Society) treatment guidelines recommends treatment for symptomatic presentation - again Lyme disease is more of a clinical diagnosis. They also recommend that treatment should not be withheld based on lab testing - in the case of false negative results, longer course of antibiotic treatment and repeat antibiotics for recurrences.
Now finding a doctor to treat you according to the ILADS guidelines is extremely difficult. These doctors have been hauled before medical boards mostly by complaints from insurance companies - you see, they are spending THEIR money, and threatened with the loss of the medical license. Some have been forced to close up shop, relocate, or sadly stop practicing altogether. We need these LLMDs! They are the ones who "get it". They understand it, us. They have a true passion for treating and helping the sick and suffering. These are the real heroes of the medical world! Without them so many would still be wondering, worrying and wounded.
In order to find a Lyme Literate Doctor you have to go underground. You can't just google 'lyme doctor in Atlanta'. Trust me on this one! ;) This is how I found a doctor. First I watched "Under Our Skin" and decided I needed to see Dr. Jemsek. If you watch the film, you will understand! Anyhow, I joined 2 online Lyme support forums. From there I had to give certain demographic information on the board to ensure I wasn't "phishing" or some undercover spy from the insurance world or medical world. After I passed that test, someone would Private Message me a list of names in my area/state. Then you're on your own. Talking about these doctors in public forums is frowned upon. We don't want to make ANY trouble for these docs! You can't google them. Some have websites but there won't be any information about how they treat Lyme disease. It's like a secret world or society. It's just crazy. This, folks, is our health care system! Our doctors have to secretly treat patients with Lyme Disease!
Here are some additional facts to enhance your knowledge!
- Fewer than 50% of patients with Lyme Disease recall a tick bite.
- Fewer than 50% recall any rash.
- CDC states they believe only 10-12% of Lyme Disease cases are actually reported to them - about 25,000 per year.
- Following the CDC's own under-reported criteria, almost 300,000 cases of Lyme go unreported every year!
- Of the total vector borne illnesses found in the US, Lyme Disease is by far the most prominent and it accounts for more than 95% of the vector borne cases of illness in the country.
- Lyme Disease has surpassed AIDS as one of the fastest growing infectious epidemics in our nation.
- Dr. Dietrich Klinghardt of Seattle, Washington says, "In the past 5 years there has not been a single patient with Lou Gehrig's/ALS, Multiple Sclerosis, or Parkinson's Disease that did not test positive for Lyme Disease." In addition, ALS, MS, Parkinson's and Alzheimer's have no known cause or origin.
- There is a link between Bb - Lyme Disease - and Alzheimer's according to Dr. Alan McDonald. He tested 10 brain samples of Alzheimer patients, and 7 out of the 10 samples contained the Bb spirochete!
Thanks for your continued support!
Saturday, May 26, 2012
Life is a Journey
I thought I had bronchitis. Mom had just spent about 3 weeks in the hospital starting on Thanksgiving day. I thought I was just over tired and had picked up a bug from the hospital. After about 3 weeks I had this odd chest pain that wouldn't go away. I had originally gone to a Doc-in-the-Box. I thought well maybe I should see a "real" doctor. So I found a family practice right up the street. The doctor examined me and said well you really look fine to me. I don't think you have bronchitis or the flu or any outward sign of infection. The chest pain concerned her. She sent me immediately to the cardiologist...that very afternoon for a work up. She really wanted me to go to the ER. But I have a husband and 3 children and well, just ewwww - who wants to go through that? I didn't feel that sick. I was just tired and felt feverish and had this chest pain. So she agreed to let me off the hook as long as I went to the cardiologist and promised to go to the ER if things got worse. I had a complete work up...lab work, EKG, Echocardiogram...all looked great!
So I went on home. Later that night/early morning, I woke up with this horrible stabbing chest pain as if a knife was being driven into my chest. I couldn't breathe. Oh it was terrible. Needless to say, after we got the kids off to school, and the baby settled in with my mom, Chris took me to the hospital. In the ER they began to run all kinds of tests. They concentrated on my chest pains. They called in the Cardio group I had just seen. They thought maybe I had a blood clot. All lab tests for that kept coming back negative. I had ultrasounds done of my entire body practically. No clots found. Everything looked normal. The cardiologist decided to keep me overnight as they wanted to do a few more tests the next day. I was dizzy, short of breath, my chest hurt all the way through to my back, I was weak. The cardiologist planned on doing a stress test the next day. Okkkkkk. I was going to walk on a treadmill?!?! This should be interesting! There was an order for no food or water after midnight I think it was...I might be off on the time. Anyhow, I was taking some Ibuprofen for pain. I am so sensitive to any pain medication - it really knocks me for a loop so I really didn't want anything stronger. Well by the next morning I was in a lot of pain so I asked for some Ibuprofen. The nurse said I was on NPO so I couldn't have any pills because I couldn't take them with water so my only option was to have something by IV. She gave me something - I can't remember the name of it - but it was wicked strong. Needless to say I couldn't even stand, let alone walk on a treadmill. The cardiologist was not happy when he came in to see me. They ended up doing a nuclear stress test. Again, everything was fine. The doctor came back to my room to tell me the results. He told me everything was fine. He said it was all in my head... have I considered seeing a therapist. For chest pain??? Uhhh no! Chris asked to see an internist. We were denied. A heated argument ensued in which I told this "doctor" that it was not all in my head! I am as stubborn as they come - I am Irish after all! That I was indeed sick and I would like to get well. He did everything but laugh. I think he smiled and rolled his eyes. So I was discharged without any answers. Sigh.
In a previous blog I told you about my angel that I met in the cardiologist's office. Her words were replaying over and over in my head...."Don't ever let anyone tell you it's all in your head"
I followed up with my GP. I still had this incredible headache along with the chest pain, fatigue, and aches. She was really surprised the hospital had not done more. She sent me immediately for an MRI...that afternoon. I like that she is so aggressive. I felt like she was on my side. She also referred me to a neurologist at the same time. She was able to get me in the very next day. I got the MRI done, had the CD in hand for the appointment the next day. Chris and I decided to take a peek. That decision changed our lives forever. There it was. Plain as day. What is now referred to as Elizabeth Taylor. A meningioma. A non cancerous brain tumor. Wow. Well there you go. Now we know what the problem is. Now we are beyond scared. But we have an answer. Chris researched like crazy that night and was pretty sure it was a meningioma before we even saw the neurologist. All I have to say is that angel was looking out for us when we were able to get in so quickly. I'm not sure we could have handled days of waiting. But I do remember calling mommy about 3am telling her I didn't think I could possibly make it until 10am. She talked me down from my ledge thankfully!
The next day the neurologist confirmed that the mass we saw on the MRI was indeed a Meningioma. I'll fast forward here as I think I covered alot of this in other entries. After we saw this doctor and a Neurosurgeon my symptoms continued and worsened. I started having seizures, fainting, headaches 24/7, fatigue - I could sleep 16 hours a day, dizziness, memory loss, hallucinations, I would wander off, I couldn't drive anymore for fear I would have a seizure or get lost - I was a complete mess!
The day after Christmas, Chris took me to yet another hospital ER. He said these people are THE BEST when it comes to brain tumors. People come from around the country to be seen by them. He thought the quickest way to them was through the ER. He was right of course. After explaining my symptoms to many doctors, they finally admitted me to the Neuro department. Alas, something will be done! Geeeeez! I have a tumor! Someone please take it out and make all this insanity stop! It seems soooo simple!!!! So I am moved upstairs. In the morning, as the occupational therapist comes in I have a seizure. Not far behind her a team of neurologists comes in to see me. Now they haven't done any testing yet...no MRIs, no Cts...just listened to me and Chris to talk basically and looked at my previous MRI. One of the neurologists sits down and says this to me...among other things...but this was the best and the only thing worth repeating..."Mrs. Simmons, are you depressed?" I answer, "NO." He says, "Well, you should be. Here's a prescription for an anti depressant. You see, we think this is all in your head. Go see a therapist. Sometimes depression manifests itself as seizures."
I seeeeeeeeeee. Now tell me, you all are smart people....who do you think is the crazy one?!?!?! Well I got the anti depressant filled just so I could prove to those crazy doctors that their magic pill wouldn't make all this go away. And what do you know....I was right!
So after that fiasco, I just went home and suffered awhile more with all these crazy symptoms that I was sure was caused by this tumor despite what all the doctors said. I took the darn pills. Nothing bothered me. :) Again, my wonderful hubby found a great Neurosurgeon at Northside and he IS wonderful! I went to see him and begged him to remove ET (Elizabeth Taylor). He said no way...she doesn't need to come out. Hhmmm...really...are you sure??? He said well I'm pretty sure! But I do believe you are having some kind of neurological issues. They just aren't related to the tumor. Wait...did he just say he believed me???? OK...I'll stick with this guy! He referred me to a new neurologist who I love! He also took one look at me, listened to me and N-E-V-E-R once said it was all in my head OR suggested I go see a therapist. THANK YOU GOD! Now I have a great team! Now just to figure out what the heck what is wrong with me. After a couple of visits, I had the neurologist stumped. He put me on Topomax for headaches and gradually increased the dose until it controlled my seizures. All the while I was still having odd symptoms that would pop up, go away, and a new one would take its place. We never knew from one day to the next how I would feel. It was so frustrating for our entire family. I would go a few weeks and feel alright. And then all of a sudden I would feel like I was hit by a truck and I would sleep all day long. I would ache from head to toe like I had the flu but without any other flu symptoms. I would have a fever every evening for no reason. I had a terribly stiff neck that would not go away. My eye would all of a sudden swell up. As I lay in bed at night I would hear music playing but only I would hear it. My ears would ring. My muscles would twitch. I would smell strange scents that weren't really there - like things burning. Just weird things that didn't seem to make sense.
One day as I was cooking dinner I had Dr. Phil on and I was half listening. All of a sudden I heard a lady say she had this stabbing chest pain that her doctor couldn't exlain. I stopped to listen. Turns out she had Lyme disease. She also had some of the same symptoms I had. Dizzy spells, headaches, aches and pains. I told Chris about it. He listened. We researched it. A few weeks later we called my neurologist and asked him if he would order a Lyme test. He didn't ask why...he just ordered it. Yea! I went to the lab. After 2 days the results came back! Drum roll please......yep you guessed it...negative. Hhmmmm....well we could have sworn we were right! So we went back to the drawing board. After more research we determined that based on my symptoms I was probably infected about a year ago. The longer you are infected, the more it affects your body systems. When a doctor tests you for Lyme disease, they start with a very basic test called the ELISA test. If this test is negative, the testing stops there. But this test is not very sensitive. In fact it's wrong alot of the time (I won't get into all the statistics here)...especially if it's not a recent bite. If your test is positive, then they do another test automatically - the Western Blot which tells you specifically what bacteria you're infected with. Well after learning this we again asked the neurologist if he would order the Western Blot test and a couple other tests. He again agreed. After a looonnggg wait...over the weekend we finally got the results. Funny thing, the neurologist said he couldn't read the results since he was not familiar with Lyme testing. I said fax them to me! I can do it!!!!! So he did! As soon as I saw the results I cried! It was positive! I had Lyme Disease! We had finally found the answer! Chris and I did it! IT WAS NOT ALL IN MY HEAD! I DON'T NEED A THERAPIST! (well maybe sometimes - her name is mommy)
Then reality sunk in. Wow...Lyme Disease! This is gonna be tough! But at least we know! But if we had just known 6 months ago! Oh how much easier this road would have been! At that moment so many emotions ran through me. I wanted to see each one of those doctors and slap them! I wanted to tell their mother's on them! What could have been cured with 2 weeks of antibiotics will know take months...possibly years to cure. Some of my neurological symptoms may be irreversible. But at least we have an answer.
And now here we are. At the beginning of yet another journey. Not knowing what this one holds. But I have faith that everything will be alright. I still have that angel sitting with me. I feel like I have come full circle with her. I had faith. I listened. Everytime I wanted to give up, give in. I listened. She was right. Don't EVER let anyone tell you it's all in your head. I knew something was wrong and no doctor - no matter how good - could tell me otherwise. Faith is a wonderful thing!
So I went on home. Later that night/early morning, I woke up with this horrible stabbing chest pain as if a knife was being driven into my chest. I couldn't breathe. Oh it was terrible. Needless to say, after we got the kids off to school, and the baby settled in with my mom, Chris took me to the hospital. In the ER they began to run all kinds of tests. They concentrated on my chest pains. They called in the Cardio group I had just seen. They thought maybe I had a blood clot. All lab tests for that kept coming back negative. I had ultrasounds done of my entire body practically. No clots found. Everything looked normal. The cardiologist decided to keep me overnight as they wanted to do a few more tests the next day. I was dizzy, short of breath, my chest hurt all the way through to my back, I was weak. The cardiologist planned on doing a stress test the next day. Okkkkkk. I was going to walk on a treadmill?!?! This should be interesting! There was an order for no food or water after midnight I think it was...I might be off on the time. Anyhow, I was taking some Ibuprofen for pain. I am so sensitive to any pain medication - it really knocks me for a loop so I really didn't want anything stronger. Well by the next morning I was in a lot of pain so I asked for some Ibuprofen. The nurse said I was on NPO so I couldn't have any pills because I couldn't take them with water so my only option was to have something by IV. She gave me something - I can't remember the name of it - but it was wicked strong. Needless to say I couldn't even stand, let alone walk on a treadmill. The cardiologist was not happy when he came in to see me. They ended up doing a nuclear stress test. Again, everything was fine. The doctor came back to my room to tell me the results. He told me everything was fine. He said it was all in my head... have I considered seeing a therapist. For chest pain??? Uhhh no! Chris asked to see an internist. We were denied. A heated argument ensued in which I told this "doctor" that it was not all in my head! I am as stubborn as they come - I am Irish after all! That I was indeed sick and I would like to get well. He did everything but laugh. I think he smiled and rolled his eyes. So I was discharged without any answers. Sigh.
In a previous blog I told you about my angel that I met in the cardiologist's office. Her words were replaying over and over in my head...."Don't ever let anyone tell you it's all in your head"
I followed up with my GP. I still had this incredible headache along with the chest pain, fatigue, and aches. She was really surprised the hospital had not done more. She sent me immediately for an MRI...that afternoon. I like that she is so aggressive. I felt like she was on my side. She also referred me to a neurologist at the same time. She was able to get me in the very next day. I got the MRI done, had the CD in hand for the appointment the next day. Chris and I decided to take a peek. That decision changed our lives forever. There it was. Plain as day. What is now referred to as Elizabeth Taylor. A meningioma. A non cancerous brain tumor. Wow. Well there you go. Now we know what the problem is. Now we are beyond scared. But we have an answer. Chris researched like crazy that night and was pretty sure it was a meningioma before we even saw the neurologist. All I have to say is that angel was looking out for us when we were able to get in so quickly. I'm not sure we could have handled days of waiting. But I do remember calling mommy about 3am telling her I didn't think I could possibly make it until 10am. She talked me down from my ledge thankfully!
The next day the neurologist confirmed that the mass we saw on the MRI was indeed a Meningioma. I'll fast forward here as I think I covered alot of this in other entries. After we saw this doctor and a Neurosurgeon my symptoms continued and worsened. I started having seizures, fainting, headaches 24/7, fatigue - I could sleep 16 hours a day, dizziness, memory loss, hallucinations, I would wander off, I couldn't drive anymore for fear I would have a seizure or get lost - I was a complete mess!
The day after Christmas, Chris took me to yet another hospital ER. He said these people are THE BEST when it comes to brain tumors. People come from around the country to be seen by them. He thought the quickest way to them was through the ER. He was right of course. After explaining my symptoms to many doctors, they finally admitted me to the Neuro department. Alas, something will be done! Geeeeez! I have a tumor! Someone please take it out and make all this insanity stop! It seems soooo simple!!!! So I am moved upstairs. In the morning, as the occupational therapist comes in I have a seizure. Not far behind her a team of neurologists comes in to see me. Now they haven't done any testing yet...no MRIs, no Cts...just listened to me and Chris to talk basically and looked at my previous MRI. One of the neurologists sits down and says this to me...among other things...but this was the best and the only thing worth repeating..."Mrs. Simmons, are you depressed?" I answer, "NO." He says, "Well, you should be. Here's a prescription for an anti depressant. You see, we think this is all in your head. Go see a therapist. Sometimes depression manifests itself as seizures."
I seeeeeeeeeee. Now tell me, you all are smart people....who do you think is the crazy one?!?!?! Well I got the anti depressant filled just so I could prove to those crazy doctors that their magic pill wouldn't make all this go away. And what do you know....I was right!
So after that fiasco, I just went home and suffered awhile more with all these crazy symptoms that I was sure was caused by this tumor despite what all the doctors said. I took the darn pills. Nothing bothered me. :) Again, my wonderful hubby found a great Neurosurgeon at Northside and he IS wonderful! I went to see him and begged him to remove ET (Elizabeth Taylor). He said no way...she doesn't need to come out. Hhmmm...really...are you sure??? He said well I'm pretty sure! But I do believe you are having some kind of neurological issues. They just aren't related to the tumor. Wait...did he just say he believed me???? OK...I'll stick with this guy! He referred me to a new neurologist who I love! He also took one look at me, listened to me and N-E-V-E-R once said it was all in my head OR suggested I go see a therapist. THANK YOU GOD! Now I have a great team! Now just to figure out what the heck what is wrong with me. After a couple of visits, I had the neurologist stumped. He put me on Topomax for headaches and gradually increased the dose until it controlled my seizures. All the while I was still having odd symptoms that would pop up, go away, and a new one would take its place. We never knew from one day to the next how I would feel. It was so frustrating for our entire family. I would go a few weeks and feel alright. And then all of a sudden I would feel like I was hit by a truck and I would sleep all day long. I would ache from head to toe like I had the flu but without any other flu symptoms. I would have a fever every evening for no reason. I had a terribly stiff neck that would not go away. My eye would all of a sudden swell up. As I lay in bed at night I would hear music playing but only I would hear it. My ears would ring. My muscles would twitch. I would smell strange scents that weren't really there - like things burning. Just weird things that didn't seem to make sense.
One day as I was cooking dinner I had Dr. Phil on and I was half listening. All of a sudden I heard a lady say she had this stabbing chest pain that her doctor couldn't exlain. I stopped to listen. Turns out she had Lyme disease. She also had some of the same symptoms I had. Dizzy spells, headaches, aches and pains. I told Chris about it. He listened. We researched it. A few weeks later we called my neurologist and asked him if he would order a Lyme test. He didn't ask why...he just ordered it. Yea! I went to the lab. After 2 days the results came back! Drum roll please......yep you guessed it...negative. Hhmmmm....well we could have sworn we were right! So we went back to the drawing board. After more research we determined that based on my symptoms I was probably infected about a year ago. The longer you are infected, the more it affects your body systems. When a doctor tests you for Lyme disease, they start with a very basic test called the ELISA test. If this test is negative, the testing stops there. But this test is not very sensitive. In fact it's wrong alot of the time (I won't get into all the statistics here)...especially if it's not a recent bite. If your test is positive, then they do another test automatically - the Western Blot which tells you specifically what bacteria you're infected with. Well after learning this we again asked the neurologist if he would order the Western Blot test and a couple other tests. He again agreed. After a looonnggg wait...over the weekend we finally got the results. Funny thing, the neurologist said he couldn't read the results since he was not familiar with Lyme testing. I said fax them to me! I can do it!!!!! So he did! As soon as I saw the results I cried! It was positive! I had Lyme Disease! We had finally found the answer! Chris and I did it! IT WAS NOT ALL IN MY HEAD! I DON'T NEED A THERAPIST! (well maybe sometimes - her name is mommy)
Then reality sunk in. Wow...Lyme Disease! This is gonna be tough! But at least we know! But if we had just known 6 months ago! Oh how much easier this road would have been! At that moment so many emotions ran through me. I wanted to see each one of those doctors and slap them! I wanted to tell their mother's on them! What could have been cured with 2 weeks of antibiotics will know take months...possibly years to cure. Some of my neurological symptoms may be irreversible. But at least we have an answer.
And now here we are. At the beginning of yet another journey. Not knowing what this one holds. But I have faith that everything will be alright. I still have that angel sitting with me. I feel like I have come full circle with her. I had faith. I listened. Everytime I wanted to give up, give in. I listened. She was right. Don't EVER let anyone tell you it's all in your head. I knew something was wrong and no doctor - no matter how good - could tell me otherwise. Faith is a wonderful thing!
Friday, May 25, 2012
There IS Something Wrong With Me!
I have an amazing family! For the past 6 months, my husband has chauffered me to doctor appointment after doctor appointment without one complaint. He repeated all my symptoms to each one of these doctors as I sat there many times incapable of remembering what day it was let alone what the heck happened the day before! As we took our tour of doctors, some of the best in the country because Chris insisted on the best healthcare for me :) , time and time again we were told that there was nothing wrong with me...tests were all negative. I kept insisting that something was INDEED wrong. No matter how many doctors told us differently, my husband always stood by my side. He has been my rock, my soft place to land, my brain, my caretaker, my chef, my chauffeur, my nurse....oh how the list goes on. He is my number one fan! I am truly blessed to be married to such a wonderful man!
As we continue this long battle, he is fine tuning his nursing skills. He may have found his new calling! He gives me my medication each morning through my PICC line. I hate it. I am sad to report that I am not his best patient. I don't know why. I think I we just don't know what to expect with the treatment. The doctor can't really tell us what will happen over the next 2 months. We just have to play it by ear every day. Well I'm a planner and that doesn't work for me! All we really know is that the road will get much rougher before it gets smoother. So I just have to continue to think positive and hope for the best.
On a brighter note....here's a good story! The home health care nurse came out to the house for the first time yesterday. She called me, asked me if I was going to come to the door. What??? Ummm...ya! She said well she's been knocking, and ringing the bell and noone answered. She said she's at 1580 and our address is 1590 so I step outside thinking she is just next door. Then she tells me what street she is on. Turns out she is across town at my mom's house! What the heck?!?! I give her directions to OUR house. Chris calls the home health care company to see what's going on. They tell him that's the address my doctor gave them. Well that is just crazy! I call my doctor and ask them what address they have for me. Turns out when I went in the other day, I put my mom's address down as my home address. And this, folks, is why CHRIS is in charge! Hahaha I don't really notice how bad my brain is...they call it Lyme Brain...until I go out. Clearly I don't get out much! Being at home, in my safe place, I don't have to deal with many of these issues. I'm not sure if that's a good thing or a bad thing! Anyhow, too bad my mom wasn't home, she would have enjoyed meeting my nurse. She would have invited her in for a cup of tea and a chat!
And then there's my mommy! Today is her birthday! She is a beautiful 39 year young lady! :) She is my best friend! I think she's Chrissy's best friend too! She is amazing! She takes care of my babies when I can't. I think they like that better anyhow...especially Connor! He bribes her to stay all the time! All he has to say is "I love you Mimi". She's so easy! Last weekend while Chris was at work, I woke up in the middle of the night terribly sick. Brayden of course chose that night to be wide awake...of all nights! I called my mom about 3am and she came right over. She took care of me, got me settled in and stayed up the rest of the night/morning with my sleepless child. She is just the bestest! She will do anything for us...all we have to do is ask. I love her!
I would like to tell my complete journey over the last 6 months now that we have actually put all the pieces of this giant puzzle together. I will have to save that for another day. A fundraiser has been started to help with the mounting medical costs. I am so grateful for people's generosity! Chris also started a Facebook group. We will try to post some things about Lyme disease there too. Until now, this is a disease that Chris and I knew nothing about. Knowing what we do now, we want to shout it from the rooftops! If you have time I would encourage you to go to the links below!
This is the link to the Fundraiser Page...
http://www.giveforward.com/helpjenfightlymedisease
This is the link to the Facebook Group Page for us...
http://www.facebook.com/?ref=tn_tnmn#!/groups/274086509356429/
This is a link to the documentary "Under Our Skin" about Lyme Disease. It's a real eye opener! It's on hulu.com and free to watch.
http://www.hulu.com/search?query=Under+Our+Skin&st=0&fs=null
This is a link with lots of great info on Lyme disease.
www.ilads.org
Thanks again for listening!
As we continue this long battle, he is fine tuning his nursing skills. He may have found his new calling! He gives me my medication each morning through my PICC line. I hate it. I am sad to report that I am not his best patient. I don't know why. I think I we just don't know what to expect with the treatment. The doctor can't really tell us what will happen over the next 2 months. We just have to play it by ear every day. Well I'm a planner and that doesn't work for me! All we really know is that the road will get much rougher before it gets smoother. So I just have to continue to think positive and hope for the best.
On a brighter note....here's a good story! The home health care nurse came out to the house for the first time yesterday. She called me, asked me if I was going to come to the door. What??? Ummm...ya! She said well she's been knocking, and ringing the bell and noone answered. She said she's at 1580 and our address is 1590 so I step outside thinking she is just next door. Then she tells me what street she is on. Turns out she is across town at my mom's house! What the heck?!?! I give her directions to OUR house. Chris calls the home health care company to see what's going on. They tell him that's the address my doctor gave them. Well that is just crazy! I call my doctor and ask them what address they have for me. Turns out when I went in the other day, I put my mom's address down as my home address. And this, folks, is why CHRIS is in charge! Hahaha I don't really notice how bad my brain is...they call it Lyme Brain...until I go out. Clearly I don't get out much! Being at home, in my safe place, I don't have to deal with many of these issues. I'm not sure if that's a good thing or a bad thing! Anyhow, too bad my mom wasn't home, she would have enjoyed meeting my nurse. She would have invited her in for a cup of tea and a chat!
And then there's my mommy! Today is her birthday! She is a beautiful 39 year young lady! :) She is my best friend! I think she's Chrissy's best friend too! She is amazing! She takes care of my babies when I can't. I think they like that better anyhow...especially Connor! He bribes her to stay all the time! All he has to say is "I love you Mimi". She's so easy! Last weekend while Chris was at work, I woke up in the middle of the night terribly sick. Brayden of course chose that night to be wide awake...of all nights! I called my mom about 3am and she came right over. She took care of me, got me settled in and stayed up the rest of the night/morning with my sleepless child. She is just the bestest! She will do anything for us...all we have to do is ask. I love her!
I would like to tell my complete journey over the last 6 months now that we have actually put all the pieces of this giant puzzle together. I will have to save that for another day. A fundraiser has been started to help with the mounting medical costs. I am so grateful for people's generosity! Chris also started a Facebook group. We will try to post some things about Lyme disease there too. Until now, this is a disease that Chris and I knew nothing about. Knowing what we do now, we want to shout it from the rooftops! If you have time I would encourage you to go to the links below!
This is the link to the Fundraiser Page...
http://www.giveforward.com/helpjenfightlymedisease
This is the link to the Facebook Group Page for us...
http://www.facebook.com/?ref=tn_tnmn#!/groups/274086509356429/
This is a link to the documentary "Under Our Skin" about Lyme Disease. It's a real eye opener! It's on hulu.com and free to watch.
http://www.hulu.com/search?query=Under+Our+Skin&st=0&fs=null
This is a link with lots of great info on Lyme disease.
www.ilads.org
Thanks again for listening!
Saturday, May 19, 2012
Tic Toc
Welcome back! I'm not sure if that's for me or for you. It's been awhile since I've felt like writing. Maybe it was the frustration. Maybe it was the anger. Maybe it was the denial. It was probably alot of things. Well you haven't missed much.
Most importantly my precious baby boy Brayden turned 1! I can't believe it! He is a wild man and all boy! So much fun but he wears us out! Kaitlin and Connor are wonderful. They are looking forward to summer vacation. So are mom and dad!
As far as my health goes, I have been slowly getting worse I would say. I had another MRI done in March. The Neurosurgeon said there has not been any change in the tumor. Hhmmm...ookkkkkk. Now I have said before that I feel like I have found a good team of doctors, so I have faith that they are giving me the best medical advice. But I am still having tons of these terrible symptoms that now my Neurosurgeon and Neurologist believe are not related to the tumor. Well SOMETHING is terribly wrong! I know enough about me that I know that something is just not right within me. I keep having weird things happen to me. They come and go and come and go. It was just odd. I would be here for hours if I had to list all the symptoms. I will hit some of the ones that I think would make anyone go hhmmm.
~ stabbing chest pain (received a clean bill of health after MANY tests by my Cardiologist)
~ seizures and night tremors
~ sudden drops in my blood pressure which would result in passing out
~ memory loss
~ getting lost
~ weird whooshing feeling in my head
~ hearing odd sounds like music which no one else did - ya that could have landed me somewhere really interesting!
~ poison ivy like rashes
~ swollen eye for no apparent reason
~ low grade fevers most afternoons/evenings
~ chronic fatigue - I can sleep 16 hours a day!
~ tingling fingers and toes
~ stiff neck and back pain
~ 24/7 headache
As I said, I could go on and on with various other things. This is a VERY short list. I have been determined to find some answers or some medication that would help me. I just refuse to live my life like this. I don't want my children growing up with a sick mom. I don't want to miss anything in their lives and I'm missing things!!! So I have been researching. Chris has been researching. Then one day I was cooking dinner and Dr. Phil was on. Now when I relayed this story to my Neurologist on Friday I'm pretty sure he rolled his eyes the moment I said Dr. Phil! Anyhow, he was doing a show on chronic illnesses. I was only half listening. All of a sudden I heard someone say they had this horrible stabbing chest pain that had been unexplained. That caught my attention! I listened as she continued to list many symptoms similar to mine. Hhmmm...Chris and I were listening intently. Turns out she has Lyme Disease. I think that has to be one of the few diseases I had not been tested for. We started researching and learning everything we could about Lyme disease. The more we found out, the more the puzzle pieces seemed to fit. We decided that I should be tested. Chris called the Neurologist and asked if he would just order some Lyme testing. Luckily he did. Turns out the test was positive! I think that I got bit by a tick about a year ago. I've had it for awhile and that's why the symptoms have progressed as much as they have. If left untreated, Lyme disease can create havoc in your body - jumping from one system to the next, including the brain. So that's what we are dealing with now. Lyme disease treatment is highly controversal. Nothing is ever easy! I will see an Infectious Disease doctor on Tuesday. I have LOTS more to say on this subject! Well on the subject of Lyme disease and the enormous difficulty in getting treated. I will save that for my next entry. In the meantime, I would encourage people to watch the documentary "Under Our Skin". You can watch it free on hulu.com. It will really open your eyes - not just to Lyme but to the medical crisis in our country.
Thanks for listening!
Most importantly my precious baby boy Brayden turned 1! I can't believe it! He is a wild man and all boy! So much fun but he wears us out! Kaitlin and Connor are wonderful. They are looking forward to summer vacation. So are mom and dad!
As far as my health goes, I have been slowly getting worse I would say. I had another MRI done in March. The Neurosurgeon said there has not been any change in the tumor. Hhmmm...ookkkkkk. Now I have said before that I feel like I have found a good team of doctors, so I have faith that they are giving me the best medical advice. But I am still having tons of these terrible symptoms that now my Neurosurgeon and Neurologist believe are not related to the tumor. Well SOMETHING is terribly wrong! I know enough about me that I know that something is just not right within me. I keep having weird things happen to me. They come and go and come and go. It was just odd. I would be here for hours if I had to list all the symptoms. I will hit some of the ones that I think would make anyone go hhmmm.
~ stabbing chest pain (received a clean bill of health after MANY tests by my Cardiologist)
~ seizures and night tremors
~ sudden drops in my blood pressure which would result in passing out
~ memory loss
~ getting lost
~ weird whooshing feeling in my head
~ hearing odd sounds like music which no one else did - ya that could have landed me somewhere really interesting!
~ poison ivy like rashes
~ swollen eye for no apparent reason
~ low grade fevers most afternoons/evenings
~ chronic fatigue - I can sleep 16 hours a day!
~ tingling fingers and toes
~ stiff neck and back pain
~ 24/7 headache
As I said, I could go on and on with various other things. This is a VERY short list. I have been determined to find some answers or some medication that would help me. I just refuse to live my life like this. I don't want my children growing up with a sick mom. I don't want to miss anything in their lives and I'm missing things!!! So I have been researching. Chris has been researching. Then one day I was cooking dinner and Dr. Phil was on. Now when I relayed this story to my Neurologist on Friday I'm pretty sure he rolled his eyes the moment I said Dr. Phil! Anyhow, he was doing a show on chronic illnesses. I was only half listening. All of a sudden I heard someone say they had this horrible stabbing chest pain that had been unexplained. That caught my attention! I listened as she continued to list many symptoms similar to mine. Hhmmm...Chris and I were listening intently. Turns out she has Lyme Disease. I think that has to be one of the few diseases I had not been tested for. We started researching and learning everything we could about Lyme disease. The more we found out, the more the puzzle pieces seemed to fit. We decided that I should be tested. Chris called the Neurologist and asked if he would just order some Lyme testing. Luckily he did. Turns out the test was positive! I think that I got bit by a tick about a year ago. I've had it for awhile and that's why the symptoms have progressed as much as they have. If left untreated, Lyme disease can create havoc in your body - jumping from one system to the next, including the brain. So that's what we are dealing with now. Lyme disease treatment is highly controversal. Nothing is ever easy! I will see an Infectious Disease doctor on Tuesday. I have LOTS more to say on this subject! Well on the subject of Lyme disease and the enormous difficulty in getting treated. I will save that for my next entry. In the meantime, I would encourage people to watch the documentary "Under Our Skin". You can watch it free on hulu.com. It will really open your eyes - not just to Lyme but to the medical crisis in our country.
Thanks for listening!
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