I've had a few relapses since my terrible week I had about a month ago. Thankfully they haven't lasted as long or as terrible. But still, it's scared me everytime it happens. The first relapse happened after I had started a larger dose of the antibiotic Levaquin. The pattern seems to be that I have relapse symptoms within 48 hours of starting a new medicine or increasing the dose. The first time it happened, it hit me fast and I was sitting downstairs watching tv. I felt hot and a wave of nausea and I felt dizzy. I remember trying to get myself upstairs to my bed without falling over or passing out. I laid in bed for a bit with a fan blowing on my face, then when the symptoms were continuing to become stronger, I stumbled (almost in some sort of dilirium) to the bathroom where I was able to get my clothes off (very uncoordinated limbs) and get into a cool bath, where I then fell asleep and woke up a bit later feeling a tiny bit better. Still, the next few days afterwards, I did not do anything because it scared me so bad that I had a relapse. I did not want to have any more relapses. I explained this reaction to my doctor later in the week at my appointment and he decided to pull me off this particular medication (as it was also causing me to have tendinitis in my joints). He was again suprised at my reaction as he had been when I came in after my week of Hell. I seem to stump him a bit when it comes to how my body reacts to the die off reaction of Lyme and Bartonella (the two bacteria that are being killed by the antibiotics). He put me on a new antibiotic Rifampin (I'm also currently on Minocycline) and gave me more pain and nausea medication. Within 48 hours of starting the Rifampin I had a terrible migraine that just did not seems to go away (and my usual pain meds for migraines didn't touch it), it would abate at times and then come back in the evenings almost everyday throughout the rest of the week. As this happened, I also was having searing pain in my neck and back. I went to my chiropractic appointments and my vertibrae seemed to be mostly alligned, so my chiropractic Dr seemed to think that the bacteria is most likely burrowed into the fascia (tissue around the spinal cord) and slowly making its way down my spine as it dies off. Doesn't that just sounds peachy? Ha! Sounds awful to me actually, but makes sense. He's had a patient in the past who had Lyme disease and showed similar symptoms as she went through treatment for Lyme. Later on, I was staying at my Sister's house (only 30 minutes from my in-laws) and continued to have severe back pain. I was trying the best I could to handle the pain, but I was having to take more and more pain meds to just get my pain to lessen just a little bit. I felt mentally as if I was about to break. I was trying everything I could to distract myself. I was trying to watch movies (but my head and eyes were hurting, so watching and listening to anything hurt me more, laying in bed made me continue to feel the pain. At one point I went and stood on my sisters balcony (she lives on a beautiful lake) and just looked out at the water and breathed in the fresh air, that helped some, but I continued to suffer greatly. My sister used Aromatic oils and rubbed them into my back, which also seemed to help for a bit and I dozed in and out of a nap for a few hours, but still the pain would return. So I decided to call my Lyme doctor on his cell (which he'd given me weeks ago and told me to use it, but I never had). He was again suprised at my reaction, gave me instructions on how to get on top of the pain rather than "chase" it as I was currently doing. And I have also decreased the dose of the Rifampin for the time being. As long as I stay on top of my pain with pain meds (large doses) I do ok. But I've had to now set alarms every 4 hours to make sure I don't miss a dose. If I do, I certainly pay for at least half a day until meds kick in and I feel on top of the pain again. He started me back on a medication called Neurontin to help with nerve pain, but unfortunately this med makes me tired and groggy, so I don't like it. But I will stay on it for now till my nervous system calms down.
Yesterday I had another relapse. I had been in bed all day for the past few days and I noticed some muscle twitching, hot and cold symptoms, and a few other symptoms creeping back in. So my mom gave me IV glutathione (which helps combat the severe symptoms of the die off reaction). Everyone left to go for a walk and while I was alone, bam! I was hit suddenly with severe symptoms again! All of a sudden I became extremely shaky, hot and sweaty, my heart was beating rapidly and I was dizzy and nauseous. I thought "oh crap!" and got myself up and to the bathroom and decided I'd sit in cool water again. Since I was alone and didn't want to pass out without anyone around, I called my husband on Skype and he stayed with me, talking to me, while I cooled my body down in the bathtub. I continued to have symptoms the rest of the night and even today I feel some (shaky, muscle twitching), but they lessened with the cool bath. So at least I know now that if I can get myself into cooler water, I can get symptoms to lessen when I have these relapses. But it's still very scary for me, and when this happens, I can't help but feel so frustrated because I feel as if I'm taking one step back in recovery instead of moving forward. I lose hope for a bit and then I try my best to gain it back and continue to think positively as much as I can. My treatment is going much slower than any of us (including my doctor) thought it would, but with my reactions I've had, we have to take it very slow or I will end up in the hospital again. One thing is for sure, these reactions show that I definetely do have Lyme and the 3 other co-infections. If I didn't have it, I wouldn't be having these reactions to the antibiotics. So in a way, it can be a blessing knowing what I actually have. I just need to keep myself strong mentally and emotionally while I endure through the worst of it all, and as I also learn to really closely listen to my body and what it's telling me. That is definetely a challenge! But rest assured, I'm still hanging in there! I continually feel so blessed to have my family surrounding me and helping me, I know that I am extremely blessed, as I know there are others out in the world who do not have this great blessing. I'm glad I'm not alone in this extremely difficult trial.
Sunday, April 21, 2013
Wednesday, April 17, 2013
I HATE Pain!!!
This is going to be short tonight, all I can say about the past few days is pain pain pain, lots of oxycodone, more pain pain pain, phenergan, pain pain pain, imitrex, pain pain pain, gabapentin...soaking in warm baths, using essential oils and massage, and still MORE pain. I just want to scream to the world "I HATE LYME DISEASE! LYME SUCKS!" That's how I feel right now... now hopefully: much needed restful sleep with some Ambien and Klonopin on board. One sucky thing about my body is that I've got a high tolerance to medications... as anyone could see by my lists of meds I just named. Most people would be knocked unconscious and possibly stop breathing from the amount I'm taking. But not me, I'm awake and functioning normal and not feeling sedated. It sucks sometimes especially when I would love to knock myself out and just get one damn good night of sleep! Sorry all for my anger... But I need to learn to let it out and not hold it in. Good Freaking Night! or at least I hope it will be.
Sunday, April 14, 2013
Close Enough to Touch
When I was a teenager, I had an opportunity to sing a solo in a special production at church called Women at the Well. It is a collection of songs by women in the New Testament of the Bible who each had a story to tell of their particular meeting with the Savior Jesus Christ. First of all, I had never sung a solo before in front of an audience, so that was frightening in itself, but I wanted to do my best and I loved to sing. I was given my song assignment and started to practice at home, I was going to be playing the girl that Jesus blessed and arose from the dead. But then I was changed and given a new song to sing called "Close Enough to Touch", I was to be the woman with an issue of blood for many years who touched the Saviours garment and through her strong faith, she was healed.
This story is found in the four gospels (Matthew, Mark, Luke, and John), the most comprehensive of which is found in Mark 5:25-34:
So I practiced and practiced, until I knew the song by heart. On the evening of the production, my fellow young women friends and I dressed ourselves in dresses and hair coverings that would have been similar to what women wore during the time of Christ. I was the second out of maybe a dozen songs. My turn arrived and I stood to sing. I remember I kept my eyes closed during the first few lines trying to gain courage and forget the audience who was listening. In many ways, I was trying to truly become the woman who I was singing about. While singing, I noticed a dear friend of our family in the audience who struggles with Multiple Sclerosis, who I admire greatly. She had tears running down her face, and I realized that this song I was singing was most likely describing much of what she has felt through the years of her physical struggles. Never could I have imagined that only a decade later, I would listen to the words of this song and it was as if they were written for me! I can't help but think that God chose me to sing this particular song and learn the words by heart for a special reason beyond what I could have understood at the time.
The Following are music and lyrics to this beautiful piece called "Close Enough To Touch" by Kenneth Cope from the production called "Women at the Well":
This story is found in the four gospels (Matthew, Mark, Luke, and John), the most comprehensive of which is found in Mark 5:25-34:
26 And had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,
29 And straightway the fountain of her blood was dried up; and she felt in her body that she was healed of that plague.
30 And Jesus, immediately knowing in himself that virtue had gone out of him, turned him about in the press, and said, Who touched my clothes?
31 And his disciples said unto him, Thou seest the multitude thronging thee, and sayest thou, Who touched me?
33 But the woman fearing and trembling, knowing what was done in her, came and fell down before him, and told him all the truth.
34 And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague."
and Luke 8:43-48:
" 43 And a woman having an issue of blood twelve years, which had spent all her living upon physicians, neither could be healed of any,
44 Came behind him, and touched the border of his garment: and immediately her issue of blood stanched.
45 And Jesus said, Who touched me? When all denied, Peter and they that were with him said, Master, the multitude throng thee and press thee, and sayest thou, Who touched me?
47 And when the woman saw that she was not hid, she came trembling, and falling down before him, she declared unto him before all the people for what cause she had touched him, and how she was healed immediately.
48 And he said unto her, Daughter, be of good comfort: thy faith hath made thee whole; go in peace."
The Following are music and lyrics to this beautiful piece called "Close Enough To Touch" by Kenneth Cope from the production called "Women at the Well":
"I've suffered much and given all
For many healers care
But nothing better - only worse
An overwhelming load to bear
Until I'm ready to lay down and die
But from the window I hear this hope filled cry
A Man named Jesus - He's come to heal us
And suddenly my faith comes alive
(Chorus)
If I get close enough to touch
Close enough to heal
Somehow I know I'll be whole
If I'm close enough
Close enough to feel
His healing power so real
Now I believe there's a miracle for me
If I'm close enough to touch
I press my way into the crowd
And touch the Master's clothes
A perfect cure felt deep inside
He turns to ask - I turn to hide
I'm afraid to reveal what was done
How I called on His power to right this wrong
But this is Jesus - He's hear to heal us
I fall at His feet and tell Him
(Chorus)
I came close enough to touch
Close enough to heal
Faith let me know I'd be whole
If I was close enough
Close enough to feel
His love for me so real
I will believe there are miracles for me
When I'm close enough to touch
And down on my knees
As He turns to leave
His eyes seem to say - Just believe
Always believe
that he's close enough to touch"
For many healers care
But nothing better - only worse
An overwhelming load to bear
Until I'm ready to lay down and die
But from the window I hear this hope filled cry
A Man named Jesus - He's come to heal us
And suddenly my faith comes alive
(Chorus)
If I get close enough to touch
Close enough to heal
Somehow I know I'll be whole
If I'm close enough
Close enough to feel
His healing power so real
Now I believe there's a miracle for me
If I'm close enough to touch
I press my way into the crowd
And touch the Master's clothes
A perfect cure felt deep inside
He turns to ask - I turn to hide
I'm afraid to reveal what was done
How I called on His power to right this wrong
But this is Jesus - He's hear to heal us
I fall at His feet and tell Him
(Chorus)
I came close enough to touch
Close enough to heal
Faith let me know I'd be whole
If I was close enough
Close enough to feel
His love for me so real
I will believe there are miracles for me
When I'm close enough to touch
And down on my knees
As He turns to leave
His eyes seem to say - Just believe
Always believe
that he's close enough to touch"
Friday, March 29, 2013
Colds and Oils
Well my sweet little boy has come down with a cold. Doesn't sound all bad right? Except my immune system is shot right now and so I'm trying extra hard not to catch his cold, but also continue to be his mommy and take care of him while he is sick. It's a difficult juggle. We'll see what happens. I really don't need a cold right now on top of everything else, but at the same time, I cannot stay away from my child, especially when he doesn't feel well and wants to be near his mommy. I go into major "mommy mode" when he gets sick and want to do all I can to make him feel comfortable and try my best to help him get over it quickly. It's really interesting how automatic that response is for me. I am also hoping his cold doesn't damper our Easter Bunny celebration in the morning. We are having the Easter Bunny stuff on Saturday so that we can keep Sunday as a special day to think about the Savior, His life, atonement and resurrection. As for myself, I have started to increase my antibiotic dose per doctor orders. Today I feel more off balance, more fatigued, increased joint pain, and more nausea, but so far I have been able to keep everything in check with medications, warm baths, rest and I am also starting to love essential oils, using them, learning about them and what all they can do for the body. It's all very interesting. I used oils with my son tonight for his cold and there's something special about being able to take care of your child when they are sick using home remedies. I have been so sick in the past, it's been hard to keep up with home remedies and being consistent with them, so we always end up in the pediatricians office with a sinus infection or ear infection, or both. I'm bound and determined to feel better myself so I can be better at taking care of my family!
Wednesday, March 27, 2013
Here's to Hoping for Better Days
These past few days have been a breath of fresh air for me. A few weeks ago I would have said I feel miserable today (with how I'm feeling at this particular moment), but after going through what I did last week, I'm just happy to not be in so much pain, to not feel so nauseated, and to be able to sleep. It makes a world of difference. Of course if I could, I'd love to go out on the town and go shopping, visit old friends and my family in the area, etc. But I can't quite do that yet. I have more confidence that things will be okay now that I have an arsenal of medications to help combat symptoms along this journey of fighting Lyme disease. Last week when things were at their worst, my husband was able to be here with me. Of course I hate that his vacation away from work was spent by my bedside, but I am so grateful he was here with me. As my mom always likes to remind me I "chose well" when I married him, which I have always agreed with her and have never questioned it. If anything, I feel like I'm just the luckiest girl in the world that he chose to marry me. He's an amazing man, one of a kind, and sometimes I am guilty of taking him for granted. He continues to stick with me through the thick and thin of everything and he's my best friend and rock that I constantly lean on. Last week on one of my scariest nights, I remember laying in bed in pain, having a hard time breathing, tears streaming down my face and not knowing what to do at that moment, but he was there kneeling by my side, holding my hand and praying for me both out loud and silently. He was able to give me a priesthood blessing and for a moment I was able to feel God's hand reaching down to bless me and say "it's going to be ok, I see you, I hear you, I am here with you, just keep holding on". He was there over those few bad days helping me walk or carrying me from place to place. He tried so hard to get me to sip on any liquid he could get down me, spoon feeding me ice chips and jello. He would wake me in the middle of the night to give me sips of fluid because my body would start to tremor in my sleep. He bought me a beautiful bouquet of flowers. When I was able to finally get out of my dilirium and look at him clearly, he was so happy to see my eyes with life behind them. I consider what we have between us as complete and utter true love for each other, and I couldn't imagine a day without him in my life. We did have to send him home on a plane this week to go back to work, it was sad, but thankfully I was having a better day and felt good being able to say goodbye at the airport looking somewhat alive and standing on my own two feet. And since I'm on the topic of my wonderful husband, a quick shout out to my sweet dear mother in-law, I saw this on pinterest and had to share because it's so true:
Yesterday, though I had a killer headache, I was able to get myself up and did some laundry. My son was such a big helper, he would help put the clothes in the wash and transfer them from the wash to the dryer and then take them out of the dryer and bring them to me on the couch to fold (he's being trained well at 4 years old, isn't he? haha, I love it). I feel lucky to be surrounded by wonderful family and friends during this time in my life. My sister also came over last night to be with me while my in-laws were at a class. I just needed someone nearby in case I needed help with my son, I was afraid to be on my own with him, so it was a comfort having her there. And today, my son is over playing at his Auntie's house with all his cousins who love him dearly! He was so excited to go and play with their legos and particularly one of his cousins that likes to play legos and pirates with him. So today Grammy is getting a break (at least I hope so) from caring for the two of us and I am enjoying a day of feeling okay. It's amazing how much that means now that I've felt much worse. I am feeling pain in my diaphragm and chest from time to time, but nothing horrible and my body does have shakes and tremors, but still not as horrible as last week. I wake up most mornings nauseated, but it seems to diminish with time or with medication. I have to be vigilent about staying very relaxed, not doing hardly anything, taking warm baths to soothe my joints and muscles, getting myself to bed on time and getting enough sleep, and make sure I'm taking my meds and supplements at breakfast, lunch and dinner. It's a full time job taking care of myself right now! I am so grateful for my mother in-law being here to care for her grandbaby and take care of him when I can't. But after last week, I'm determined not to let myself sink that low again. I have another doctor appointment tomorrow for a check up and more IV glutathione, and most likely we will be increasing antibiotics again slowly to see how my body reacts. So here is to hoping for better days ahead! And a special special thank you to my family and friends, I have received so many messages, emails, letters, all expressing love and prayers in my behalf. Thank you all so very much for your love, it truly means the world to me.
And just to add a few more favorites that I've found on Pinterest (I know, I know, I'm a total pinterest junkie... but there's so much fun stuff on there to find), I hope you enjoy a few of my favorites, I might even start posting different quotes at the end of all my posts, who knows? The sky's the limit.
*(I did not make any of these and don't know who the artist/authors all are, just found them on Pinterest)
Yesterday, though I had a killer headache, I was able to get myself up and did some laundry. My son was such a big helper, he would help put the clothes in the wash and transfer them from the wash to the dryer and then take them out of the dryer and bring them to me on the couch to fold (he's being trained well at 4 years old, isn't he? haha, I love it). I feel lucky to be surrounded by wonderful family and friends during this time in my life. My sister also came over last night to be with me while my in-laws were at a class. I just needed someone nearby in case I needed help with my son, I was afraid to be on my own with him, so it was a comfort having her there. And today, my son is over playing at his Auntie's house with all his cousins who love him dearly! He was so excited to go and play with their legos and particularly one of his cousins that likes to play legos and pirates with him. So today Grammy is getting a break (at least I hope so) from caring for the two of us and I am enjoying a day of feeling okay. It's amazing how much that means now that I've felt much worse. I am feeling pain in my diaphragm and chest from time to time, but nothing horrible and my body does have shakes and tremors, but still not as horrible as last week. I wake up most mornings nauseated, but it seems to diminish with time or with medication. I have to be vigilent about staying very relaxed, not doing hardly anything, taking warm baths to soothe my joints and muscles, getting myself to bed on time and getting enough sleep, and make sure I'm taking my meds and supplements at breakfast, lunch and dinner. It's a full time job taking care of myself right now! I am so grateful for my mother in-law being here to care for her grandbaby and take care of him when I can't. But after last week, I'm determined not to let myself sink that low again. I have another doctor appointment tomorrow for a check up and more IV glutathione, and most likely we will be increasing antibiotics again slowly to see how my body reacts. So here is to hoping for better days ahead! And a special special thank you to my family and friends, I have received so many messages, emails, letters, all expressing love and prayers in my behalf. Thank you all so very much for your love, it truly means the world to me.
And just to add a few more favorites that I've found on Pinterest (I know, I know, I'm a total pinterest junkie... but there's so much fun stuff on there to find), I hope you enjoy a few of my favorites, I might even start posting different quotes at the end of all my posts, who knows? The sky's the limit.
*(I did not make any of these and don't know who the artist/authors all are, just found them on Pinterest)
The Power of Music
The following is a post I wrote over a week ago, but wasn't able to post it till now:
I have always loved music. I remember hearing stories of how I'd walk around the house singing. My dad said he always knew I was happy whenever he heard me singing. I played in the school band from 5-9th grade, and most, if not all of my siblings were big on listening to music. My mom and dad both love music, it's just always been around me growing up. So when I met my husband who likes music but it's not important to him or a passion of his, I was floored. I thought "what? how can you not LOVE music? I thought everybody loves music like I do" You know those times when a song just hits you, you feel as if the words were written just for you, you feel the beat and rhythm through your bones and you just want to listen to that song over and over again because it expresses how you feel at that very moment in time. I listen to music when I'm happy, sad, need a boost, need to feel more relaxed, when i'm missing a loved one, etc. Singing songs to my little boy at night is my favorite part of bedtime, and I just love hearing him sing around the house during the day, just as my dad said he knew i was happy when I was singing, I know my little boy is happy when he's singing. I love to drive in the car by myself with whatever music i feel like listening to at that moment (mp3 players hooked to the car stereo is awesome). My music collection is huge and spans from oldies like the Beach Boys, to songs from the 80's, 90's, 00's, church music, christian music, christian rock music, country, classical, music from movie soundtracks, you name it, its probably there. So lately I've been trying to figure out why music is so important to me? And after much thought I realized that it is my way of expressing how I'm feeling at that moment in time without having to say anything at all. It's my own self therapy. So when I have days like lately where I feel down and hopeless as if this current trial is never going to end, I put my headphones on and pick a song that fits how i feel, or a song that I know will boost my spirit and it always seems to help even if it's just a little. So today I am grateful for the gift and talent of music and singing, I know not everyone has it, I'm glad I do. It's been a true blessing in my life and the life of my family. The following are a few favorite quotes I found on Pinterest recently that also describe my love for music so well:
I have always loved music. I remember hearing stories of how I'd walk around the house singing. My dad said he always knew I was happy whenever he heard me singing. I played in the school band from 5-9th grade, and most, if not all of my siblings were big on listening to music. My mom and dad both love music, it's just always been around me growing up. So when I met my husband who likes music but it's not important to him or a passion of his, I was floored. I thought "what? how can you not LOVE music? I thought everybody loves music like I do" You know those times when a song just hits you, you feel as if the words were written just for you, you feel the beat and rhythm through your bones and you just want to listen to that song over and over again because it expresses how you feel at that very moment in time. I listen to music when I'm happy, sad, need a boost, need to feel more relaxed, when i'm missing a loved one, etc. Singing songs to my little boy at night is my favorite part of bedtime, and I just love hearing him sing around the house during the day, just as my dad said he knew i was happy when I was singing, I know my little boy is happy when he's singing. I love to drive in the car by myself with whatever music i feel like listening to at that moment (mp3 players hooked to the car stereo is awesome). My music collection is huge and spans from oldies like the Beach Boys, to songs from the 80's, 90's, 00's, church music, christian music, christian rock music, country, classical, music from movie soundtracks, you name it, its probably there. So lately I've been trying to figure out why music is so important to me? And after much thought I realized that it is my way of expressing how I'm feeling at that moment in time without having to say anything at all. It's my own self therapy. So when I have days like lately where I feel down and hopeless as if this current trial is never going to end, I put my headphones on and pick a song that fits how i feel, or a song that I know will boost my spirit and it always seems to help even if it's just a little. So today I am grateful for the gift and talent of music and singing, I know not everyone has it, I'm glad I do. It's been a true blessing in my life and the life of my family. The following are a few favorite quotes I found on Pinterest recently that also describe my love for music so well:
So don't be surprised if I have a post here and there about a particular song and it's lyrics, I LOVE MUSIC!
Sunday, March 24, 2013
A Week from Hell
This last week has been the longest, hardest, most challenging week so far. I honestly don't even know where to begin. Last friday I went to my doctor appointment and went over lab results. My Lyme disease results came back inconclusive but leaning slightly positive, which is apparently not unusual. Many people test negative for it even when they have it. It's a sneaky little bacteria that knows how to hide. I had positive and high titers for 3 co-infections that tend to go along with Lyme. So with the results and my symptoms, my doc decided he would go ahead and start treatment for Lyme. He told me he'd start me on two oral antibiotics. At first I was devastated, I wanted him to just go straight to IV and hit me with all he had, but he had to talk me out of it. He told me he'd really hurt previous patients by going too quickly. I still wasnt' happy, but went ahead with his plans anyway. I was warned that symptoms would worsen before they get better. I truly had no idea how much worse they would get.
My husband flew in saturday for a week stay and we were able to take a night out away from everyone and spend time together. We had borrowed a wheelchair from friends so he could push me around the city so I wouldn't be so exhausted. I had never thought at my young age that my life would have to resort to being pushed in a wheelchair. I really had to suck up my pride, but in the end it was nice to get out, get some fresh air and not be exhausted after only a few minutes of being outside.
By Sunday evening (about 48 hours after starting on antibiotics), my symptoms were worsening. My tremors were turning into full body tremors, full body weakness, increased nausea, headaches, and just general pain. I wasn't sleeping much, and remember waking up early monday morning to stabbing chest pain that went straight through to my back and all I could do was shallow breath until it calmed down and I was able to relax a bit. By Tuesday, I was so shaky and weak, my husband had to feed me food because I couldn't do it myself. My brain/cognitive function was becoming more and more foggy and I had inceased symptoms of what felt like the flu, but much much worse (body aches, hot/cold, weakness, nausea, etc). At dinner time tuesday evening, I had a hard wave of nausea hit me while sitting at the table and I got up to go lie down on the couch in the front room. I almost passed out on the way there, luckily being able to catch myself before I fell and then laid on the couch for quite a while, the whole time praying I wouldn't vomit on my mother in-laws beautiful white carpet or beautiful front room couch. Eventually my husband helped me upstairs to lie in bed, but by that point I was having severe body tremors (if I had been unconscious, I felt as if my body was having a seizure), severe pain and nausea in my diaphragm and chest, and felt very short of breath. Now, being a medic and having had experience also working in ERs, I would have to be dying before I went into one. I never want to be known as the patient who always goes into the ER for something small and insignificant. But by this time, I was desperate and didnt know what else to do. So off to the ER we went, that was a definite first for me! The last time I had been an ER patient, I was 1 years old for febrile seizures. I will try to summarize my night there, overall I was not impressed with the care I recieved, but was too weak and sick to voice my opinion. I had to request medication for my nausea, my migraine, and a bag of fluid before they discharged me, it was like pulling teeth to get any care! The physical assessment by the dr was pathetic, he barely touched me, I do better and much more thorough physical exams and questioning out in the field as a medic. But I was able to get some relief from pain and nausea and we were sent home. Of course having to explain my med list and history was difficult in itself. Once you have any sort of mental history like depression or anxiety, and they see meds on your list like prozac, ativan, ambien... you might as well stamp "mental case/psycho" on your forehead, because that is all they focus on for the rest of the visit (total tunnel vision)... no joke! it's horrible. If I could have voiced my thoughts I would have yelled out "I'm not feeling depressed! I'm not having a panic attack! I haven't even taken my ativan in days! it's not mental!!!!" Then of course, trying to explain that you are being treated for Lyme disease is also another hard concept for the doctors and nurses to grasp, you might as well have said you were an alien from outerspace. It's really comforting when the nurse tells you that the doctor is doing "research" at the moment before he treats you, which basically means he's probably googling or looking on Web MD at Lyme disease... seriously, no joke. I've actually had a dr do that right in front of me during an office visit, it really gives you so much more trust and confidence in the person that is treating you! So that night we arrived home around midnight and still feeling aweful, I just laid in bed as still as possible all night long unable to get myself to eat or drink anything. This continued through the next day and another night. I had moments where I was able to take sips and able to eat ice chips. I was able to talk with my mom on the phone for a while, which hearing her voice was comforting. My sister who lives nearby, stopped in and visited with me in bed, that was a good distraction for a few hours. But my time was mostly spent with the window open, fan blowing on me, cool clothe on my head and laying as still as possible trying not to vomit, but at the same time getting so desperate I was hoping to just get it over with. We had contacted my Lyme doctor and I had an appointment with his office on wednesday afternoon for IV glutathione (which is used in severe cases to help clear out the liver and body of toxins created by the bacteria dying off).
Wednesday morning, I was so dehydrated, my lips were cracking, I could barely swallow liquid without choking, my body tremors continued to be severe, and I felt as if I was going to be unconscious soon. I was able to wisper to Jordon "call ambulance now", so he did. That was another first... having EMTs arrive at my house and take a ride in as a patient on the ambulance. I couldn't take full breathes of air, my body felt iike it was going into shock and so weak that the movement of lifting my chest up and down was becoming too difficult. I was scared, I had never felt so physically ill in my entire life, and I've been quite sick alot over the years. So back to the ER I went, the doc I saw on wednesday morning was more thorough in her exam of me and tested everything to make sure my liver, pancreas, kidneys, etc were all working ok (my liver enzymes had been very high on friday's dr appointment). She gave me zofran for nausea, but I told her I'd been on zofran for over 24 hours and it wasn't helping, so I got a shot of phenergan and benedryl to also help. She gave me toradol and imitrex to help my migraine and I was given 2L of fluid before being released. I was instructed to go straight to the Dr's office "do no pass go, do not collect $200" as the nurse put it. So off we went into the city to see my dr. I was wheeled into his office and looking pale, green, shaking uncontrollably, hardly able to hold myself or my head/eyes up, unshowered for 3 or 4 days, hair probably in all different odd directions, I must have looked like a beauty! He took one look at me and thankfully had just had a cancellation and his other patient was late, so he took me back right away to talk with me, my husband and my mother in-law. Oh and a special shout out before I forget to my sister and niece, my sister made it to the ER to be with me and my husband and my niece and mother in-law played with my son in the waiting area for the few hours we were there. And they took him home for the rest of the day to play while I was being cared for at the Dr's. Thank goodness for family!!! Back to my doctor, he looked at me and said that the good thing is that he's now 100% sure I have Lyme disease and that this is a true severe die off (herxheimer) reaction to the antibiotics, the bad news... I have Lyme disease. He told me that I am one of his worst cases he's seen in his clinic over the years and very graciously wrote me prescriptions for some heavy duty meds to help with nausea, pain, sleep, all to try and keep me comfortable through this part of it all. He also decreased the amount of antibiotics and said he felt that we needed to go much slower and more careful with me. He joked "aren't you glad I didn't hit you all at once with a pic line and IV antibiotics?" I said "yes I'm glad, and I'd laugh with you but I'm too tired right now". Then we made plans for me to come in twice a week for IV glutathione to help my body not have such a severe die off reaction. He was even willing to send me home with IV equipment in case I needed more fluids (since I can start my own IVs or coach my mother in-law who's an RN how to do it too). He gave me his peronal cell # and told us to call day or night no matter what time if I needed anything or felt like I was in need of going back to the ER. As I've now found out, the ER had no idea what to do with me, the nurse even had to ask "how do you spell Lyme?" oh great, that sure made me feel warm and fuzzy!
I am happy to report that the last few days I've been able to drink and eat again, and the meds I'm on are strong enough that I have been able to sleep mostly through the night! It's been a complete and total miracle. I am falling in love with my in-laws deep bath tub, taking many warm baths to soothe my sore muscles and joints (which had become even more painful from all the tremors/clenching for days). At the moment while I type this, my hands are at least steady enough to be able to type! yay! so big progress since the beginning of last week. I'm sad that my husbands vacation from work was spent caring for me 24 hours a day, but am extremely grateful he was here to be by my side, having him here was a HUGE comfort for me.
I know my son has been very worried aboug his mommy, he's spent a few times holding my hand while I'm in severe pain, and even praying for me (he's 4). His smiles, giggles, little hand in mine and his prayers are so comforting for me. But at the same time, I'm sad that he's had to see his mommy so sick, and I hope it's a memory that will fade for him over time. I am so deeply grateful for my faith and testimony of God, of my Savior Jesus Christ and the healing power of the Priesthood. I was able to recieve a few blessings this week from my husband and father in-law. I spent many moments throughout this week praying hard in my mind to my heavenly father to give me strength to get through this time. I look back at previous trials I've been through and know that without those other trials preparing me, I wouldn't have been able to get through this week. I keep praying and hoping that this is the worst of it and that I'll be on the mend sooner than later, but if there is still more to come, at least I know that I have a strong support system of God, family and my doctor who care for me and can help me through it all. During my darkest moments I cling to God and remind myself I'm not alone, he is there for me and he has been through and felt all I am feeling. With all that I've felt this week, I am truly unable to comprehend the pain he went through for the world in Gethsemane and being crucified on the cross for us all. Words cannot express my gratitude or my deep love for Him. But His words in the scriptures, His example, words from our living Prophet and Apostles today and beautiful soothing church music help keep me calm when I need it most.
I am sure I have much more I could say about this last week, but i'm tired and needing another nap, so I'll just leave this as is for now. For my friends and family reading this, please do research on Chronic Lyme Disease (beyond web MD, CDC, Wikipedia, etc), most of the mainstream doctors don't believe in it, which is truly sad and frustrating! So I am determined to spread the word and learn more about this debilitating disease myself, since I still don't know much about it. It's been a huge eye opening experience for me so far.
A few quotes that have gotten me through this week: "You don't ever realize how strong you are until being strong is all you have left"
and from Henry B Eyring "If the foundation of Faith is not embedded in our hearts, then the power to endure will crumble" (From his talk "Mountains to Climb").
My husband flew in saturday for a week stay and we were able to take a night out away from everyone and spend time together. We had borrowed a wheelchair from friends so he could push me around the city so I wouldn't be so exhausted. I had never thought at my young age that my life would have to resort to being pushed in a wheelchair. I really had to suck up my pride, but in the end it was nice to get out, get some fresh air and not be exhausted after only a few minutes of being outside.
By Sunday evening (about 48 hours after starting on antibiotics), my symptoms were worsening. My tremors were turning into full body tremors, full body weakness, increased nausea, headaches, and just general pain. I wasn't sleeping much, and remember waking up early monday morning to stabbing chest pain that went straight through to my back and all I could do was shallow breath until it calmed down and I was able to relax a bit. By Tuesday, I was so shaky and weak, my husband had to feed me food because I couldn't do it myself. My brain/cognitive function was becoming more and more foggy and I had inceased symptoms of what felt like the flu, but much much worse (body aches, hot/cold, weakness, nausea, etc). At dinner time tuesday evening, I had a hard wave of nausea hit me while sitting at the table and I got up to go lie down on the couch in the front room. I almost passed out on the way there, luckily being able to catch myself before I fell and then laid on the couch for quite a while, the whole time praying I wouldn't vomit on my mother in-laws beautiful white carpet or beautiful front room couch. Eventually my husband helped me upstairs to lie in bed, but by that point I was having severe body tremors (if I had been unconscious, I felt as if my body was having a seizure), severe pain and nausea in my diaphragm and chest, and felt very short of breath. Now, being a medic and having had experience also working in ERs, I would have to be dying before I went into one. I never want to be known as the patient who always goes into the ER for something small and insignificant. But by this time, I was desperate and didnt know what else to do. So off to the ER we went, that was a definite first for me! The last time I had been an ER patient, I was 1 years old for febrile seizures. I will try to summarize my night there, overall I was not impressed with the care I recieved, but was too weak and sick to voice my opinion. I had to request medication for my nausea, my migraine, and a bag of fluid before they discharged me, it was like pulling teeth to get any care! The physical assessment by the dr was pathetic, he barely touched me, I do better and much more thorough physical exams and questioning out in the field as a medic. But I was able to get some relief from pain and nausea and we were sent home. Of course having to explain my med list and history was difficult in itself. Once you have any sort of mental history like depression or anxiety, and they see meds on your list like prozac, ativan, ambien... you might as well stamp "mental case/psycho" on your forehead, because that is all they focus on for the rest of the visit (total tunnel vision)... no joke! it's horrible. If I could have voiced my thoughts I would have yelled out "I'm not feeling depressed! I'm not having a panic attack! I haven't even taken my ativan in days! it's not mental!!!!" Then of course, trying to explain that you are being treated for Lyme disease is also another hard concept for the doctors and nurses to grasp, you might as well have said you were an alien from outerspace. It's really comforting when the nurse tells you that the doctor is doing "research" at the moment before he treats you, which basically means he's probably googling or looking on Web MD at Lyme disease... seriously, no joke. I've actually had a dr do that right in front of me during an office visit, it really gives you so much more trust and confidence in the person that is treating you! So that night we arrived home around midnight and still feeling aweful, I just laid in bed as still as possible all night long unable to get myself to eat or drink anything. This continued through the next day and another night. I had moments where I was able to take sips and able to eat ice chips. I was able to talk with my mom on the phone for a while, which hearing her voice was comforting. My sister who lives nearby, stopped in and visited with me in bed, that was a good distraction for a few hours. But my time was mostly spent with the window open, fan blowing on me, cool clothe on my head and laying as still as possible trying not to vomit, but at the same time getting so desperate I was hoping to just get it over with. We had contacted my Lyme doctor and I had an appointment with his office on wednesday afternoon for IV glutathione (which is used in severe cases to help clear out the liver and body of toxins created by the bacteria dying off).
Wednesday morning, I was so dehydrated, my lips were cracking, I could barely swallow liquid without choking, my body tremors continued to be severe, and I felt as if I was going to be unconscious soon. I was able to wisper to Jordon "call ambulance now", so he did. That was another first... having EMTs arrive at my house and take a ride in as a patient on the ambulance. I couldn't take full breathes of air, my body felt iike it was going into shock and so weak that the movement of lifting my chest up and down was becoming too difficult. I was scared, I had never felt so physically ill in my entire life, and I've been quite sick alot over the years. So back to the ER I went, the doc I saw on wednesday morning was more thorough in her exam of me and tested everything to make sure my liver, pancreas, kidneys, etc were all working ok (my liver enzymes had been very high on friday's dr appointment). She gave me zofran for nausea, but I told her I'd been on zofran for over 24 hours and it wasn't helping, so I got a shot of phenergan and benedryl to also help. She gave me toradol and imitrex to help my migraine and I was given 2L of fluid before being released. I was instructed to go straight to the Dr's office "do no pass go, do not collect $200" as the nurse put it. So off we went into the city to see my dr. I was wheeled into his office and looking pale, green, shaking uncontrollably, hardly able to hold myself or my head/eyes up, unshowered for 3 or 4 days, hair probably in all different odd directions, I must have looked like a beauty! He took one look at me and thankfully had just had a cancellation and his other patient was late, so he took me back right away to talk with me, my husband and my mother in-law. Oh and a special shout out before I forget to my sister and niece, my sister made it to the ER to be with me and my husband and my niece and mother in-law played with my son in the waiting area for the few hours we were there. And they took him home for the rest of the day to play while I was being cared for at the Dr's. Thank goodness for family!!! Back to my doctor, he looked at me and said that the good thing is that he's now 100% sure I have Lyme disease and that this is a true severe die off (herxheimer) reaction to the antibiotics, the bad news... I have Lyme disease. He told me that I am one of his worst cases he's seen in his clinic over the years and very graciously wrote me prescriptions for some heavy duty meds to help with nausea, pain, sleep, all to try and keep me comfortable through this part of it all. He also decreased the amount of antibiotics and said he felt that we needed to go much slower and more careful with me. He joked "aren't you glad I didn't hit you all at once with a pic line and IV antibiotics?" I said "yes I'm glad, and I'd laugh with you but I'm too tired right now". Then we made plans for me to come in twice a week for IV glutathione to help my body not have such a severe die off reaction. He was even willing to send me home with IV equipment in case I needed more fluids (since I can start my own IVs or coach my mother in-law who's an RN how to do it too). He gave me his peronal cell # and told us to call day or night no matter what time if I needed anything or felt like I was in need of going back to the ER. As I've now found out, the ER had no idea what to do with me, the nurse even had to ask "how do you spell Lyme?" oh great, that sure made me feel warm and fuzzy!
I am happy to report that the last few days I've been able to drink and eat again, and the meds I'm on are strong enough that I have been able to sleep mostly through the night! It's been a complete and total miracle. I am falling in love with my in-laws deep bath tub, taking many warm baths to soothe my sore muscles and joints (which had become even more painful from all the tremors/clenching for days). At the moment while I type this, my hands are at least steady enough to be able to type! yay! so big progress since the beginning of last week. I'm sad that my husbands vacation from work was spent caring for me 24 hours a day, but am extremely grateful he was here to be by my side, having him here was a HUGE comfort for me.
I know my son has been very worried aboug his mommy, he's spent a few times holding my hand while I'm in severe pain, and even praying for me (he's 4). His smiles, giggles, little hand in mine and his prayers are so comforting for me. But at the same time, I'm sad that he's had to see his mommy so sick, and I hope it's a memory that will fade for him over time. I am so deeply grateful for my faith and testimony of God, of my Savior Jesus Christ and the healing power of the Priesthood. I was able to recieve a few blessings this week from my husband and father in-law. I spent many moments throughout this week praying hard in my mind to my heavenly father to give me strength to get through this time. I look back at previous trials I've been through and know that without those other trials preparing me, I wouldn't have been able to get through this week. I keep praying and hoping that this is the worst of it and that I'll be on the mend sooner than later, but if there is still more to come, at least I know that I have a strong support system of God, family and my doctor who care for me and can help me through it all. During my darkest moments I cling to God and remind myself I'm not alone, he is there for me and he has been through and felt all I am feeling. With all that I've felt this week, I am truly unable to comprehend the pain he went through for the world in Gethsemane and being crucified on the cross for us all. Words cannot express my gratitude or my deep love for Him. But His words in the scriptures, His example, words from our living Prophet and Apostles today and beautiful soothing church music help keep me calm when I need it most.
I am sure I have much more I could say about this last week, but i'm tired and needing another nap, so I'll just leave this as is for now. For my friends and family reading this, please do research on Chronic Lyme Disease (beyond web MD, CDC, Wikipedia, etc), most of the mainstream doctors don't believe in it, which is truly sad and frustrating! So I am determined to spread the word and learn more about this debilitating disease myself, since I still don't know much about it. It's been a huge eye opening experience for me so far.
A few quotes that have gotten me through this week: "You don't ever realize how strong you are until being strong is all you have left"
and from Henry B Eyring "If the foundation of Faith is not embedded in our hearts, then the power to endure will crumble" (From his talk "Mountains to Climb").
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