Today things took a turn. I felt the need to write about it while it is still raw. I was sent in for an emergency MRI straight from my IV infusion appointment. The results were not pleasant. I find myself feeling quite scared and yet a relentless need to stay focused in some form of faith. I'm finding positivity as a key ingredient in maintaining any grounding. Maybe it's a crutch, but sometimes we need them. It's not a Polyanna act, it's a necessity. And, besides even if the positivity can't change the outcome, it can change the day to day experience of the struggle. If the worst case scenario ended up being the result, I still have the days and weeks of hope as the experience that led me there, instead of staying stuck in dread... And, that counts for something, no matter what. That being said, it doesn't change the fact that I do wonder why. I think about the fact that my life seems like in my 30's it should be filled with meeting people,celebrating, building a future.. Not stuck in bed, not worried about these other things.. But, this is my path. That's the reality. So, I will do what I have to do to get to the other side of this. I have to.
The MRI revealed that the uterine tumors have indeed begun to very rapidly grow over the last week especially. A few months ago, the ultrasound revealed a handful of them. Today showed a grimmer reality. There is around a dozen now. There is one that has grown beyond the size of a grapefruit. It is pushing on intestines and causing at least a partial obstruction in more than one place. There is a fluid pocket showing and we are unsure what this fluid actually contains. These things are dangerous. There is some concern that the growths themselves may actually be adhering to my intestines and organs. They also are taking a thorough look at the MRI to make sure there isn't anything else going on other than the Lyme and the uterine growths. It looks like they will have to go into surgery as soon as this week, or possibly next week at the latest. Some of the reasons I have been feeling so sick comes from these toxic back ups in my system. Because of the Lyme infection and treatment, I thought that I was just herxing and that was causing the pain, fatigue, struggle and nausea. Now, I see it was a combination of all of these things happening simultaneously. No wonder. I was trying to be a trooper and just push through it, although it was not coming with ease. I've been doing my best. That's what I've got.
I found myself feeling very frightened tonight. What will surgery entail? Especially with these other variables? What will happen after surgery? I feel like my femininity is being threatened. A hysterectomy at 34? Why, I wonder? I have to come back to faith. I just have to. I have to know that what comes next, I will find the strength to endure it. The original definition of suffering just meant to undergo or endure. It doesn't have to be a negative place, if I change my perception. The last surgery, I went into blindly and then all aspects were surprises. Now I have something to look to for reference, although this surgery is more complex. Especially if they are adhered to organs. They don't know what to expect completely until they get in and begin. So faith is where I must land, even through the fear, insecurity and the unknown. Faith isn't blind, it's visionary. I believe this. I will find out tomorrow when my doctors can consult one another with the MRI results how time sensitive it is. But, I was told today by my internalist and infectious disease specialist to cancel my jobs that are scheduled for this week. It's possible it will happen this week. I will know more tomorrow.
I am learning that being strong, having faith and being positive doesn't mean that fear, sadness and panic aren't there. It simply means you have tools or friends to calm those reactions when they arise. And, tonight I am sad, scared and pretty confused. But, I will use those tools to cope. And, I will remind myself again, that people go through much worse and come out gracefully. Tonight I will sleep with both the unknown and faith tucked in beside me.
Monday, September 20, 2010
Sunday, September 19, 2010
A shadow or a friend
I'm not going to lie, this has been a really rough stretch. I am very grateful to have found this new doctor. He is brilliant, a mad scientist of sorts with a resume that impresses and a laugh that can shake the two story building I go to every day for IV infusions. The treatments are seven days a week and take approximately an hour. Instead of placing a port surgically, he opts to just use your veins every day with a fresh poke. He prefers to use the hand veins. I did not take to this well. For some reason my hands are super sensitive and I bruised terribly after the each of the treatments done in them. The actual stick of the needle was very painful and then the entirety of the infusion burned and was uncomfortable. I ended up after a couple of days with both of my hands bruised thoroughly and found myself dreading going in. The needle would come out and I was miserable, the jab into the hand and I felt as if I'd puke, and I just hated it. After some coercing, we moved up and to my arm veins and now I am much happier. The stick is still uncomfortable, but only for a moment and then the infusion is a breeze. The office is full of laughter and silliness and we always tend to make it fun, so that helps. It's the aftermath of treatment that's killing me. I am definitely herxing and it is no fun. I feel like I have a flu on steroids. It's like arthritis, the flu, and food poisoning had a baby. Ugh. I have never in my life felt as fatigued as I do. It's a struggle to do almost anything. I'm trying to maintain my pet sitting and mobile pet care stuff, but it is a challenge. I've had to drop my art class. It's a total bummer, but I tried and at this point in the game, it just isn't in the cards. I keep reminding myself that if I just focus on my healing, I will be able to take all the classes I want and enjoy so many things again on the other side of all of this.
Since day 3 of treatment, things have gotten really hard. I have trouble driving from one place to another, even if the trip is only a few blocks away. Any task is a huge mountain to climb. HUGE. I've found myself having to take naps or lay in the fetal position after 10-15 minutes of doing anything. I have spent all time that I don't HAVE to be somewhere, in bed. Even being in bed is uncomfortable. Every bone and muscle in my body aches, my headaches are almost around the clock, the nausea is relentless and I'm just plain uncomfortable in my skin. I've developed an infection in my throat and mouth from the releasing of the toxins. I've also been having spells of sadness. These waves come over me and I just sort of surrender to them for now. I feel like it's a necessary release. I don't dwell or fixate on it, but I do feel what I need to feel. It's just not a pleasant time. I also have been having intense abdominal pain. I have been able to feel the uterine tumors by palpitating my abdomen for some time now, but this week they have taken a turn for the worse. I often have take baths in the middle of the night or early mornings to alleviate the muscle and joint pain. The other morning as I was laying flat in the bathtub, I realized that my abdomen actually looks misshapen and you can eye them now. I had an abdominal exam as this concerned me and they have grown substantially in a matter of a week. It looks as if they are actually rapidly growing the same way they did two years ago. They have been quickly growing for some time, but this is back to the record breaking growing by the looks of it. My Dr. believes they need to be removed now. It looks as if we are not going to be able to wait till the 42 days of IV treatments are complete to go ahead with the surgery as originally planned. It's looking like I will need to get in for surgery sooner than later and the IV treatments will just be given to me in the hospital to keep up with my treatment plan. My doctor believes that the tumors have now caused a partial obstruction and waiting any longer is dangerous. This may be the other reason I have been feeling so horrible this last week. I have an MRI scheduled for Tuesday. He wants to get a clear picture of exactly what's happening in my abdomen and make sure it's nothing more than what's suspected. Besides, they will need an MRI no matter what to map the surgery. So back into the MRI space machine to sit motionless for what feels like forever, for the 4th time in my life. Grr.
Now, on to the good news... Feeling really sick during treatments most likely means that the infection is being killed and the little nasty spirochetes are dying off. Yay. It's nice to be able to stop when I'm feeling like I've been hit by a bus and remind myself that this points to progress. I have also been reading a lot and strengthening my spirit as much as possible. I'm finding strengths inside myself I didn't know I had. Ideas are coming up for creative projects and I see the light shining brightly at the end of this ridiculous tunnel. On days when things feel unbearable or overwhelming, just the right person calls or I open a book to the right page and am reminded to readjust my thinking. This is an opportunity, not just an illness. I feel an appreciation for my body now that I didn't have before. I don't think I will be taking things for granted anymore. I have no desire to self destruct or escape in unhealthy ways. I see the beauty and gifts a healthy body offers. And, when I have mine back, I won't take it lightly. When I'm well again, I think my life is going to take off in ways that I hadn't imagined. I feel good things coming and I trust it.
I had a lovely experience this week with a hospice patient. She's a cat lover and really wanted to see a cat. So, I was just the volunteer for the job. Her cat had died and she's now been placed in a convalescent hospital and can't get another pet. I managed to muster the energy and take Bob the cat to her. Her face lit up when we entered her room and she cried at the sight of Bob in all his shiny black fur. She looked so sick of being stuck in her room with the repetitive TV buzzing noises at her in the background. She seemed depressed and lonely. I related to her in a very small way. It was amazing to watch a light come into her eyes that wasn't there and then to see the exchange of love between her and Bob. It was some of the best medicine I've had all week. She asked me to come back, and I'll keep that promise. I also had the opportunity to speak to the new hospice volunteers in training this week. It was an honor. It felt good to get out of myself and although lyme was there in the room with me, it wasn't the focus. I shared with them (and reminded myself) of the great gift there is in helping others. In some ways it's a very selfish act, because you always come away with your heart feeling a little fuller. Filling your heart when things feel dark is imperative. It keeps you from sinking into a dark or numb place for too long. It allows you to practice compassion with yourself and others. They can give me all the medicine in the world, but the true healing comes from the help, hugs, support and laughter of my loved ones. Everyone deserves to have that. It's a rough world, but it's not hopeless. I feel like this world is in such a bizarre place right now. It seems like there is a train of destruction moving full speed in one direction. We need to move another train of compassion and change full speed in the other, no matter what our struggles are. And, ironically, it is often our struggles that give us the ability to get on that train. My sister in law sent me this poem this week and I felt such a resonance with it. It had me in tears. It is simply beauty and truth dancing through words. It reminds me of the Kahliil Gibran quote from the Prophet, "Joy is our sorrow unmasked". I wanted to share it with you all in case you feel the resonance as well. Please be well friends. I love you.
Kindness
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.
-Naomi Shihab Nye
Since day 3 of treatment, things have gotten really hard. I have trouble driving from one place to another, even if the trip is only a few blocks away. Any task is a huge mountain to climb. HUGE. I've found myself having to take naps or lay in the fetal position after 10-15 minutes of doing anything. I have spent all time that I don't HAVE to be somewhere, in bed. Even being in bed is uncomfortable. Every bone and muscle in my body aches, my headaches are almost around the clock, the nausea is relentless and I'm just plain uncomfortable in my skin. I've developed an infection in my throat and mouth from the releasing of the toxins. I've also been having spells of sadness. These waves come over me and I just sort of surrender to them for now. I feel like it's a necessary release. I don't dwell or fixate on it, but I do feel what I need to feel. It's just not a pleasant time. I also have been having intense abdominal pain. I have been able to feel the uterine tumors by palpitating my abdomen for some time now, but this week they have taken a turn for the worse. I often have take baths in the middle of the night or early mornings to alleviate the muscle and joint pain. The other morning as I was laying flat in the bathtub, I realized that my abdomen actually looks misshapen and you can eye them now. I had an abdominal exam as this concerned me and they have grown substantially in a matter of a week. It looks as if they are actually rapidly growing the same way they did two years ago. They have been quickly growing for some time, but this is back to the record breaking growing by the looks of it. My Dr. believes they need to be removed now. It looks as if we are not going to be able to wait till the 42 days of IV treatments are complete to go ahead with the surgery as originally planned. It's looking like I will need to get in for surgery sooner than later and the IV treatments will just be given to me in the hospital to keep up with my treatment plan. My doctor believes that the tumors have now caused a partial obstruction and waiting any longer is dangerous. This may be the other reason I have been feeling so horrible this last week. I have an MRI scheduled for Tuesday. He wants to get a clear picture of exactly what's happening in my abdomen and make sure it's nothing more than what's suspected. Besides, they will need an MRI no matter what to map the surgery. So back into the MRI space machine to sit motionless for what feels like forever, for the 4th time in my life. Grr.
Now, on to the good news... Feeling really sick during treatments most likely means that the infection is being killed and the little nasty spirochetes are dying off. Yay. It's nice to be able to stop when I'm feeling like I've been hit by a bus and remind myself that this points to progress. I have also been reading a lot and strengthening my spirit as much as possible. I'm finding strengths inside myself I didn't know I had. Ideas are coming up for creative projects and I see the light shining brightly at the end of this ridiculous tunnel. On days when things feel unbearable or overwhelming, just the right person calls or I open a book to the right page and am reminded to readjust my thinking. This is an opportunity, not just an illness. I feel an appreciation for my body now that I didn't have before. I don't think I will be taking things for granted anymore. I have no desire to self destruct or escape in unhealthy ways. I see the beauty and gifts a healthy body offers. And, when I have mine back, I won't take it lightly. When I'm well again, I think my life is going to take off in ways that I hadn't imagined. I feel good things coming and I trust it.
I had a lovely experience this week with a hospice patient. She's a cat lover and really wanted to see a cat. So, I was just the volunteer for the job. Her cat had died and she's now been placed in a convalescent hospital and can't get another pet. I managed to muster the energy and take Bob the cat to her. Her face lit up when we entered her room and she cried at the sight of Bob in all his shiny black fur. She looked so sick of being stuck in her room with the repetitive TV buzzing noises at her in the background. She seemed depressed and lonely. I related to her in a very small way. It was amazing to watch a light come into her eyes that wasn't there and then to see the exchange of love between her and Bob. It was some of the best medicine I've had all week. She asked me to come back, and I'll keep that promise. I also had the opportunity to speak to the new hospice volunteers in training this week. It was an honor. It felt good to get out of myself and although lyme was there in the room with me, it wasn't the focus. I shared with them (and reminded myself) of the great gift there is in helping others. In some ways it's a very selfish act, because you always come away with your heart feeling a little fuller. Filling your heart when things feel dark is imperative. It keeps you from sinking into a dark or numb place for too long. It allows you to practice compassion with yourself and others. They can give me all the medicine in the world, but the true healing comes from the help, hugs, support and laughter of my loved ones. Everyone deserves to have that. It's a rough world, but it's not hopeless. I feel like this world is in such a bizarre place right now. It seems like there is a train of destruction moving full speed in one direction. We need to move another train of compassion and change full speed in the other, no matter what our struggles are. And, ironically, it is often our struggles that give us the ability to get on that train. My sister in law sent me this poem this week and I felt such a resonance with it. It had me in tears. It is simply beauty and truth dancing through words. It reminds me of the Kahliil Gibran quote from the Prophet, "Joy is our sorrow unmasked". I wanted to share it with you all in case you feel the resonance as well. Please be well friends. I love you.
Kindness
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.
-Naomi Shihab Nye
Saturday, September 11, 2010
A new phase
I saw a new doctor today. I am split in my reaction to this new information and phase in treatment. This Doctor is an MD specializing in infectious disease and internal medicine. He has recently relocated to the area from the East Coast and is very versed in the area of vector borne diseases and has an unbelievable wealth of information relating to Lyme and Lyme related illnesses. He also takes insurance! Hallelujah! It was both hope inspiring and disconcerting. He feels I have not been getting adequate treatment. That being said, he did not feel that there was any ill intent on the part of my previous doctor and felt that she had tried to help me, but that her treatment regime was lacking at best. And, lacking because of the medical training and information offered to even the doctors trying to become Lyme literate. According to him, all of the IM shots that I have been enduring the last several months were essentially pointless as they do not have the power to deal with an infection of the caliber I'm dealing with. He feels that I should have been treated via IV antibiotic treatments long ago, and especially since my blood test results showed positive Lyme blood results months ago. He explained to me that the dosage of the meds, which have felt a little brutal in their administration were far below anything that could adequately deal with the level of illness. I have been getting 1 gm of Rocephin reconstituted into 4.2 mL of lidocaine and injected into my glut muscle every 3-4 days. He claims that the minimum treatment should have been 2 gm of Rocephin administered via IV DAILY for a minimum of 42 days. He says that no serious infection can be treated with oral antibiotics and that IM shots can not deliver the medications to the needed systems of the body. The medication can not get to the brain or blood to kill or keep the infection at bay. He also felt many of the prescriptions and supplements I have been taking have been causing their own side effects and some are flat out just dangerous drugs. He advised me to stop ALL medications at once, except the meds to deal with pain, muscle spasms and anxiety. Wow. The thought that I have been ingesting pharmaceuticals on a daily basis that have been compromising my health is frustrating. The preceding days have been filled with extra ailments, including severe abdominal distention and pain and relentless fatigue. He warned me that my lapse in productive treatment has sent me back even further and said there is still a strong possibility that the treatment will fall short of 'fixing' me. This illness has the potential to stay chronic, but he has hope that I may respond well and have relief from the pain and other symptoms. I am willing to float through on these wishes. What other choice do I have? I start a strict regime of IV treatments tomorrow. I will have to go into the office 7 days a week for IV infusions of the drug for at least the next 42 days straight. This will take a huge commitment on my part as I can not skip even one day of the treatment. The plan is that after 42 days of treatment, we will re access. If I have relief, we will stop treatment and see what my body does. If the symptoms return, we will either continue IV therapy or he will decide that we may be dealing with even other types of illness and will begin a new screening of other kinds of illnesses immediately. He confirmed that the hysterectomy is inevitable. His hope is that we can put it off until after the 42 days and then move forward with the surgery then. In the meantime if the abdominal pain and distention get worse, or if I begin to hemorrhage again, the surgery will become an immediate need and the IV treatment will either be done during my hospitalization or put off till after my release from the hospital. He wants me to bring in every bottle of medication prescribed up to this point. I am anticipating the look on his face, when I wander in with a Santa-size sack of bottles. It's really quite absurd. Maybe cutting all these oral medications will cut down the nausea and vomiting. God, I hope so. What a bonus.
This doctor had actually retired and decided to begin a quiet life, when he had the feeling it was not the right thing to do. He had relocated from the east coast to this area with his sick wife to concentrate on getting her healthy and beginning a new life. But, upon arriving in the area he had a nagging feeling he needed to be working and also was battling some boredom. He set up shop to run a small clinic and found himself swamped with cases of people in dire need of help. He told me that he had not planned on stumbling upon an epidemic with such need. So now he is spreading hope and catering to our needs by working 7 days a week to treat us appropriately. The IV treatment will hopefully stop the need for a surgical port to be put in, which can have major complications and the cost is sky high. What a blessing.Now, let's just hope my veins hold up. Seriously, I don't know how I have the luck I do. How I found him, was able to get in and was able to get some possible real answers to my problems, is beyond me. But, I am grateful.
He is concerned about the health-care situation in the state of CA for people suffering from Lyme related issues. He educated me about a little known fact concerning a strain of the borelia bacteria found here on the west coast, It is a different strain of borrelia and he says the system is not searching and treating for this epidemic. This form of borellia is transmitted by a different kind of tick, known to feed on small animals, like squirrels and rodents. Ick. How gross. I feel gross in even saying these things, but really there is no shame in it. We get bit by ticks when we live in wooded areas. End of story. At the beginning of next week, I will be going back in for MORE blood draws and tests. He says what is happening is criminal and when looking at all the evidence, one could safely come up with the assumption there are health-care officials that find it profitable to keep patients sick and use it as a platform to sell supplements and profit over the suffering of people.
My new treatment starts tomorrow. I can't imagine what the veins in my hands will look like after weeks of daily pokes. I hope I am still able to paint with the injection sites and the swollen joints.
Up till now, I have felt that treatment has no end in sight. Now, at least, there is hope for an actual break or end in this grueling process. What do I have to lose? If it doesn't work, then on to the next phase. This gives me something to hang on to, and I need that. I really do. I am having trouble trusting professionals and knowing who to put my faith in, but because of his credentials, his concern for the patients, his willingness to do the insurance billing, and willingness to work 7 days a week to help us, I am impressed and hopeful. I woke up this morning, crying in pain and with a fever. I Had a very long day of jobs and doctor's appointments. Once I finally stumbled into my bed around 7 pm, I fell in and out of a deep sleep, waking drenched from sweating episodes and having muscle spasms. One of the dogs I am currently taking care of was weighing heavy on my heart. She has kidney issues and has been having trouble not peeing in the house. She feels so ashamed when she does, that she hides and has such a look of remorse. I decided to get up and head over there for a visit, on me, to let her relieve herself one more time before morning and give her love. I felt so much better and rewarded myself with a snack pack of nutter butters and a blogging session to get this all out. I know the intensity of this treatment will be challenging and that I have a very busy week to make money to keep paying these crazy bills, but I know I will be given the strength to walk through it as best I can. I really do appreciate the chance these struggling times give us to prove to ourselves what we are capable of. It is absolutely an opportunity to show ourselves what we are made of. It is low times that the power of the universe, god, a higher power, whatever you want to call it, has the chance to break into your life. I feel a need to give back this week, because I have been receiving so much love and support and because it feeds my soul. This next week, I will be seeing one of my griefbuster kids, speaking at a hospice volunteer training workshop and taking a cat to see a lovely women in a convalescent home (she's a cat lover and has requested a volunteer to bring some fuzzy love to her). Something tells me this work will bring even more healing and strength to me then the 22 ga needle with the IV drip coming into my life tomorrow.
This doctor had actually retired and decided to begin a quiet life, when he had the feeling it was not the right thing to do. He had relocated from the east coast to this area with his sick wife to concentrate on getting her healthy and beginning a new life. But, upon arriving in the area he had a nagging feeling he needed to be working and also was battling some boredom. He set up shop to run a small clinic and found himself swamped with cases of people in dire need of help. He told me that he had not planned on stumbling upon an epidemic with such need. So now he is spreading hope and catering to our needs by working 7 days a week to treat us appropriately. The IV treatment will hopefully stop the need for a surgical port to be put in, which can have major complications and the cost is sky high. What a blessing.Now, let's just hope my veins hold up. Seriously, I don't know how I have the luck I do. How I found him, was able to get in and was able to get some possible real answers to my problems, is beyond me. But, I am grateful.
He is concerned about the health-care situation in the state of CA for people suffering from Lyme related issues. He educated me about a little known fact concerning a strain of the borelia bacteria found here on the west coast, It is a different strain of borrelia and he says the system is not searching and treating for this epidemic. This form of borellia is transmitted by a different kind of tick, known to feed on small animals, like squirrels and rodents. Ick. How gross. I feel gross in even saying these things, but really there is no shame in it. We get bit by ticks when we live in wooded areas. End of story. At the beginning of next week, I will be going back in for MORE blood draws and tests. He says what is happening is criminal and when looking at all the evidence, one could safely come up with the assumption there are health-care officials that find it profitable to keep patients sick and use it as a platform to sell supplements and profit over the suffering of people.
My new treatment starts tomorrow. I can't imagine what the veins in my hands will look like after weeks of daily pokes. I hope I am still able to paint with the injection sites and the swollen joints.
Up till now, I have felt that treatment has no end in sight. Now, at least, there is hope for an actual break or end in this grueling process. What do I have to lose? If it doesn't work, then on to the next phase. This gives me something to hang on to, and I need that. I really do. I am having trouble trusting professionals and knowing who to put my faith in, but because of his credentials, his concern for the patients, his willingness to do the insurance billing, and willingness to work 7 days a week to help us, I am impressed and hopeful. I woke up this morning, crying in pain and with a fever. I Had a very long day of jobs and doctor's appointments. Once I finally stumbled into my bed around 7 pm, I fell in and out of a deep sleep, waking drenched from sweating episodes and having muscle spasms. One of the dogs I am currently taking care of was weighing heavy on my heart. She has kidney issues and has been having trouble not peeing in the house. She feels so ashamed when she does, that she hides and has such a look of remorse. I decided to get up and head over there for a visit, on me, to let her relieve herself one more time before morning and give her love. I felt so much better and rewarded myself with a snack pack of nutter butters and a blogging session to get this all out. I know the intensity of this treatment will be challenging and that I have a very busy week to make money to keep paying these crazy bills, but I know I will be given the strength to walk through it as best I can. I really do appreciate the chance these struggling times give us to prove to ourselves what we are capable of. It is absolutely an opportunity to show ourselves what we are made of. It is low times that the power of the universe, god, a higher power, whatever you want to call it, has the chance to break into your life. I feel a need to give back this week, because I have been receiving so much love and support and because it feeds my soul. This next week, I will be seeing one of my griefbuster kids, speaking at a hospice volunteer training workshop and taking a cat to see a lovely women in a convalescent home (she's a cat lover and has requested a volunteer to bring some fuzzy love to her). Something tells me this work will bring even more healing and strength to me then the 22 ga needle with the IV drip coming into my life tomorrow.
Saturday, September 4, 2010
But you don't look sick and other ramblings....
So a few months back, I was looking online for a 'lyme-awareness" t-shirt. While searching on Cafe Press, I came across a t-shirt that said "But, you don't look sick" and several other shirts with similar messages. I thought that they were odd things to wear written on a t-shirt and wondered why anyone would. I now understand why people created them, although I would still never wear the shirts. Shortly after being diagnosed, I took to the Internet to find support and answers. In that search, I came across stories of a few well known people that are suffering from Lyme disease. Two of those people are female authors that I have great respect for. Amy Tan (author of The Joy Luck Club) and Rebecca Wells (Author of The Ya-Ya Sisterhood books). I remember relating to their words even though I had barely begun my fight in battling this disease. Now, I am recalling that in both of their accounts they mentioned how people were constantly pointing out how great they looked and how they didn't look sick, even though they felt terrible. I didn't quite understand why this was important. In the documentary "Under our Skin" one of the women, Dana, talks about the wide range of outer appearances of Lyme patients. Some people are wheel chair bound while others, as she put it, are the walking dead. These people look totally normal and yet are experiencing great struggle in their bodies. Right now, I am one of these people. I do have times where I am pale from anemia, am puffy from inflammation, times where I am falling down or tremoring and it is obvious. Much of the time though, I look very normal. In fact since treatment started, I often look better than I have in a long time. The antibiotics have cleared almost every blemish from skin, have caused my hair to grow thicker and stronger, make me sensitive to the sunlight creating a tan after only minutes in the sun. People are constantly saying how great I look and say 'I'm glowing'. I appreciate the compliments, even though I often feel horrible on the inside. What I don't appreciate is when the compliment is given with a hidden judgement. Rebecca Wells wrote about the same experience. Why does this matter you may wonder? Well, because it is really hard to be battling chronic pain, troubled organs, horrible headaches and to have people look at you like you are trying to get away with something. There is this hint of doubt when they are pointing out how 'good you look', instead of an offering of a real compliment. WHY WOULD ANYONE WANT TO BE GETTING AWAY WITH THIS? That attitude nurtures that voice that still sits inside of me thinking that I can somehow stop all of this by willing it so. Those "it's all in your head' thoughts return even though I know better. I still have moments of feeling like I could will it all away. And sometimes I try, with not so great results. I end up wearing myself out completely. It sets healing time back when I try to live like a person who doesn't have limitations, when I do. I don't have to be defined by my disease, but I do have to take care of myself with awareness of what my body can and can't do. I'm working on not letting other people's ignorant assumptions affect me., but I do still get my feelings hurt.
I think it's great that there are positive benefits to the treatments. I don't want to look sick. I like that my skin is clear, that I can tan easily, that the puffiness is better than it has been. I wish others would not point it out to me like I'm trying to get away with something though. Seeing the t-shirts online makes me realize other people are irritated by this same problem. I think wearing t-shirts like the ones below is completely over the top, but I suppose I get what would push someone to that point.
I don't mind being reminded that other people have it way worse. I remind myself all the time. I think it's a good thing to put things in I also think understanding that 'this too shall pass" is a beautiful reminder and very true. I am, however, a little tired of the nap comments and working comments. I am still working as much as I can. There are many days that I would take a terrible day at work over being nauseated and in intense pain. I'd just like to urge people to think before they make comments. I'm only posting these silly shirts because I find it pretty interesting that this is a pretty wide spread thing people with chronic illness face. I think educating people in a compassionate way is far better than wearing a ridiculous shirt that really just makes the person look crazier to the outsider. I also think if someone is mentally ill enough to make up a chronic illness, they too need help and not condescending comments. Awareness and education are the key.
I got bit by another tick this past week! Yep, really. I am starting to think they are hunting me down. I immediately got a reactionary rash covering my leg, but it went away within hours. My doctor wanted me to get the tick tested, but I soaked it in rubbing alcohol and ended up drying it out before I knew she wanted me to do that. I hope that the 4 insanely strong antibiotics I'm already on will take care of any possible exposure I may have had.
This illness and experience has really calmed me down in so many ways. I really feel like I am seeing things in a better perspective. When you struggle to do just the normal every day things, you realize that energy should not be wasted on the trivial things. I see the way people create unnecessary drama in their lives and expend their energy in unproductive ways. I also have become aware of the places and people I have wasted energy in and on. I have a limited amount of energy now, so I choose to spend it in places that are worthy of it. I have a lower tolerance for other people's unhealthy b.s. I may struggle to do everyday things, but I have a clarity I didn't have before and I'm thankful for it. That's one of the blessings of all of this. Clear skin, thicker hair, better parking places, and a new lease on life are a few more.
You don't look sick, but you are.... So conversely, I have started to be aware of people who are not battling a chronic physical illness and are living, by choice, in really unhealthy ways. If you have your health, please appreciate it. Maybe take a small lesson from me and realize without having to get very ill, what a blessing life and health are. I suggest not sweating the dumb shit, being grateful for your healthy body, not polluting it with unnecessary toxins or other people's drama, and using your energy to do something you love. If you feel stuck, seek out support and help from places that nurture you and break old patterns before you make yourself sick. If you don't have physical limitations, don't live like you do! You don't have to. That is a blessing. Live it.
I think it's great that there are positive benefits to the treatments. I don't want to look sick. I like that my skin is clear, that I can tan easily, that the puffiness is better than it has been. I wish others would not point it out to me like I'm trying to get away with something though. Seeing the t-shirts online makes me realize other people are irritated by this same problem. I think wearing t-shirts like the ones below is completely over the top, but I suppose I get what would push someone to that point.
I don't mind being reminded that other people have it way worse. I remind myself all the time. I think it's a good thing to put things in I also think understanding that 'this too shall pass" is a beautiful reminder and very true. I am, however, a little tired of the nap comments and working comments. I am still working as much as I can. There are many days that I would take a terrible day at work over being nauseated and in intense pain. I'd just like to urge people to think before they make comments. I'm only posting these silly shirts because I find it pretty interesting that this is a pretty wide spread thing people with chronic illness face. I think educating people in a compassionate way is far better than wearing a ridiculous shirt that really just makes the person look crazier to the outsider. I also think if someone is mentally ill enough to make up a chronic illness, they too need help and not condescending comments. Awareness and education are the key.
I got bit by another tick this past week! Yep, really. I am starting to think they are hunting me down. I immediately got a reactionary rash covering my leg, but it went away within hours. My doctor wanted me to get the tick tested, but I soaked it in rubbing alcohol and ended up drying it out before I knew she wanted me to do that. I hope that the 4 insanely strong antibiotics I'm already on will take care of any possible exposure I may have had.
This illness and experience has really calmed me down in so many ways. I really feel like I am seeing things in a better perspective. When you struggle to do just the normal every day things, you realize that energy should not be wasted on the trivial things. I see the way people create unnecessary drama in their lives and expend their energy in unproductive ways. I also have become aware of the places and people I have wasted energy in and on. I have a limited amount of energy now, so I choose to spend it in places that are worthy of it. I have a lower tolerance for other people's unhealthy b.s. I may struggle to do everyday things, but I have a clarity I didn't have before and I'm thankful for it. That's one of the blessings of all of this. Clear skin, thicker hair, better parking places, and a new lease on life are a few more.
You don't look sick, but you are.... So conversely, I have started to be aware of people who are not battling a chronic physical illness and are living, by choice, in really unhealthy ways. If you have your health, please appreciate it. Maybe take a small lesson from me and realize without having to get very ill, what a blessing life and health are. I suggest not sweating the dumb shit, being grateful for your healthy body, not polluting it with unnecessary toxins or other people's drama, and using your energy to do something you love. If you feel stuck, seek out support and help from places that nurture you and break old patterns before you make yourself sick. If you don't have physical limitations, don't live like you do! You don't have to. That is a blessing. Live it.
Thursday, September 2, 2010
Beauty and struggle
The last few weeks have been riddled with ups and downs. I'll start with the ups. I am constantly shocked at the capacity of the human heart, even though I know it's complexity and beauty. This blog must start out with my immense gratitude for the benefit yard sale that was put on by my amazing friend Jamie.
Jamie and I were inseparable for a good amount of our middle school days. I remember the fun we had, the noise we made, the trouble we got ourselves into and the energy we were able to expend on an around-the-clock basis. Jamie and I have not spent much time together in our adult lives, but have run into each other here and there over the years. She beams with energy, has a booming laugh and a strong personality. She's constantly working on herself and dealing with the things most people don't have the strength to face. I was surprised when she contacted me on Facebook after reading my blog and said she wanted to do something to help. She came up with the brilliant idea to do a benefit yardsale and donate the money to help me with my medical expenses. It could not have happened at a better time, as my bills are piling up and my insurance payment alone is $1000 a month. It seems that just when I start to panic, something beautiful shows up. I'm learning to skip the panic all together and rely faith. I'm working on it. Jamie saw a need and wanted to make a difference. That is beautiful. And, it is rare. I can't even tell you the countless hours she put in organizing the event. She drove all around picking up stuff, stored it at her house, organized it and ran an all day sale. She was so enthusiastic, selfless, and hardworking. I watched her at the sale juggling a billion things, dealing with difficult people and still checking in on me throughout. She moved with absolute grace and dedication. And, all for someone that hasn't been actively in her life in a long, long time. She did it just because she wanted to be of service and wanted to make a difference for someone else. She made a huge difference in my life. Huge. Many people donated items. I was humbled, touched and overwhelmed. Thank you to everyone who was involved. Words can not do my gratitude justice. Even perfect strangers donated huge items. I was given things to help with my treatment and healing, including the most comfortable bed on the planet. It allows me to lift my head and feet and helps with chronic pain. The first night I slept on it, I slept for several hours without waking up, which is unheard of these days. The yardsale was a total success and it was such a relief to go to my multiple appointments on Monday and know that I was able to pay for them without worry. I am a lucky girl.
The downs.
My appointments were a little rough. One of the big hopes was that with the Lyme treatment the uterine tumors might stop growing. I was really holding on to the possibility that I may be able to avoid a hysterectomy if I could get my immune system functioning better. But, it did not happen that way. The exam revealed that the tumors have, in fact, grown over the last few months. The largest one is occupying a major portion of my lower abdomen now and creating some complications. The hysterectomy is inevitable. My gynecologist says that I can wait a little longer, but the longer I wait the more complicated the surgery will be. If I wait too long, it may become a sudden need. I'm under close observation. I will begin seeing my new doctor on the 10th. He is an infectious disease and internal medicine specialist. He just moved here from the east coast and has experience with Lyme disease. I am so relieved. He even takes insurance which will be helpful. He and my gynecologist will decide together the timing of the surgery. I still was holding onto the hope of a miracle and conjuring up dreams of being the girl that wasn't supposed to give birth, but somehow still would. That is officially no longer a miracle I will see.
I started several new meds about 3-4 weeks ago. I was on oral antibiotics, several other meds and supplements and getting one intramuscular shot a week. That shot was pretty hefty, at 2+ mL into the muscle every seven days. The new intramuscular shots are even heftier. It's a stronger drug that is more specific in the way it hits the body and attacks. The drug itself burns quite a bit and is reconstituted in lidocaine. The volume is 4.2 mLs into the muscle twice a week. There's no getting around it, it just sucks. The lidocaine is supposed to numb the area, but really just stings and isn't any better. It's such a high volume and given so often that I am struggling with it. My muscles don't really have time to recoup before the next shot is due. I am going to have to have the port and PICC line put in soon. I was hoping that they could possibly do both surgical procedures at once and avoid having to have two surgical procedures and hospitalizations. But, I guess the insurance company frowns on double procedures and is making it impossible to combine them. You'd think they'd like the fact that they wouldn't have to pay for two seperate anesthesias and hospitalizations. Thank god I have loved ones and this amazing bed to help me through the surgeries. The new oral meds are also taking some getting used to, but I am putting along and making do.
The new drugs are rough on my system. There's no getting around it. I have been in bed quite a bit. The good news is that the shittier I feel on them, the better the sign that they are working. I have to keep focusing on the positive and remembering that they are working and that light at the end of the tunnel is shining. I am incredibly fatigued, have lots of muscle spasms, joint flair ups, and tons of nausea. After attending the yard sale, I was in bed for 17 hours straight. I asked my doctor who on earth has to go to bed for 17 hours after a yard sale (and I wasn't even the one doing the work!) Her response was simply "Lyme patients", with an understanding smile. I'm not used to being so limited. I miss the days of a billion responsibilities. I used to just hop from one job, volunteer assignment, social engagement to etc, to the next. I have had several crying spells since the new drugs started. I can't tell if it is just a side effect or if I'm experiencing lyme induced depression or just depression brought on by my altered life. I just go with it. My jack russell has a new trick to help. When I cry now, she cries with me. It is totally absurd and makes me giggle, often pulling me out of my funk. It's too bad I can't do an impression of how she sounds in this blog, because it is so silly. I love that I find myself laughing and rubbing her belly and pulling out of the crying spells. It's the little things that so often make the big differences.
I started my art class. The teacher made an exception and let me into the already overflowed class. It's a challenge with the body pain and cramping hands, but it is worth it. It feeds my spirit. I love painting and creating. I have already fallen down in class and watched the shocked faces and whispers that followed. Today, I had my shot done and then went straight to class where I began to have a herxing episode while working on my painting. I managed to get myself into the back closet while tremor-ing to hide till it passed. When I emerged from the closet, there were staring, concerned faces pointed in my direction and some questions from curious classmates followed. One guy actually asked me if I was having withdrawals! Haha. I hadn't thought of it looking that way. I explained to him what was happening and reassured him that I was fine. One difficult part of all of this is watching the people I love worry about me. I know it looks scary and is hard on people. Last week when I was up North, a very good friend of mine got very upset watching me herx. I want people to know that I am okay and that it probably looks a lot scarier than it is. I wish this didn't have negative effects on my loved ones too. My Dad looks so worried sometimes and I can see this ache in him that I long to take away. It is worse than the actual symptoms sometimes.
Despite the struggle, I see all the beauty and I am trying to stay focused in that direction. That's what matters. Life could be so much worse and in the grand scheme of things, this is not so bad. I'll keep fighting. With friends and support like I have, I have so much to fight with.
Jamie and I were inseparable for a good amount of our middle school days. I remember the fun we had, the noise we made, the trouble we got ourselves into and the energy we were able to expend on an around-the-clock basis. Jamie and I have not spent much time together in our adult lives, but have run into each other here and there over the years. She beams with energy, has a booming laugh and a strong personality. She's constantly working on herself and dealing with the things most people don't have the strength to face. I was surprised when she contacted me on Facebook after reading my blog and said she wanted to do something to help. She came up with the brilliant idea to do a benefit yardsale and donate the money to help me with my medical expenses. It could not have happened at a better time, as my bills are piling up and my insurance payment alone is $1000 a month. It seems that just when I start to panic, something beautiful shows up. I'm learning to skip the panic all together and rely faith. I'm working on it. Jamie saw a need and wanted to make a difference. That is beautiful. And, it is rare. I can't even tell you the countless hours she put in organizing the event. She drove all around picking up stuff, stored it at her house, organized it and ran an all day sale. She was so enthusiastic, selfless, and hardworking. I watched her at the sale juggling a billion things, dealing with difficult people and still checking in on me throughout. She moved with absolute grace and dedication. And, all for someone that hasn't been actively in her life in a long, long time. She did it just because she wanted to be of service and wanted to make a difference for someone else. She made a huge difference in my life. Huge. Many people donated items. I was humbled, touched and overwhelmed. Thank you to everyone who was involved. Words can not do my gratitude justice. Even perfect strangers donated huge items. I was given things to help with my treatment and healing, including the most comfortable bed on the planet. It allows me to lift my head and feet and helps with chronic pain. The first night I slept on it, I slept for several hours without waking up, which is unheard of these days. The yardsale was a total success and it was such a relief to go to my multiple appointments on Monday and know that I was able to pay for them without worry. I am a lucky girl.
The downs.
My appointments were a little rough. One of the big hopes was that with the Lyme treatment the uterine tumors might stop growing. I was really holding on to the possibility that I may be able to avoid a hysterectomy if I could get my immune system functioning better. But, it did not happen that way. The exam revealed that the tumors have, in fact, grown over the last few months. The largest one is occupying a major portion of my lower abdomen now and creating some complications. The hysterectomy is inevitable. My gynecologist says that I can wait a little longer, but the longer I wait the more complicated the surgery will be. If I wait too long, it may become a sudden need. I'm under close observation. I will begin seeing my new doctor on the 10th. He is an infectious disease and internal medicine specialist. He just moved here from the east coast and has experience with Lyme disease. I am so relieved. He even takes insurance which will be helpful. He and my gynecologist will decide together the timing of the surgery. I still was holding onto the hope of a miracle and conjuring up dreams of being the girl that wasn't supposed to give birth, but somehow still would. That is officially no longer a miracle I will see.
I started several new meds about 3-4 weeks ago. I was on oral antibiotics, several other meds and supplements and getting one intramuscular shot a week. That shot was pretty hefty, at 2+ mL into the muscle every seven days. The new intramuscular shots are even heftier. It's a stronger drug that is more specific in the way it hits the body and attacks. The drug itself burns quite a bit and is reconstituted in lidocaine. The volume is 4.2 mLs into the muscle twice a week. There's no getting around it, it just sucks. The lidocaine is supposed to numb the area, but really just stings and isn't any better. It's such a high volume and given so often that I am struggling with it. My muscles don't really have time to recoup before the next shot is due. I am going to have to have the port and PICC line put in soon. I was hoping that they could possibly do both surgical procedures at once and avoid having to have two surgical procedures and hospitalizations. But, I guess the insurance company frowns on double procedures and is making it impossible to combine them. You'd think they'd like the fact that they wouldn't have to pay for two seperate anesthesias and hospitalizations. Thank god I have loved ones and this amazing bed to help me through the surgeries. The new oral meds are also taking some getting used to, but I am putting along and making do.
The new drugs are rough on my system. There's no getting around it. I have been in bed quite a bit. The good news is that the shittier I feel on them, the better the sign that they are working. I have to keep focusing on the positive and remembering that they are working and that light at the end of the tunnel is shining. I am incredibly fatigued, have lots of muscle spasms, joint flair ups, and tons of nausea. After attending the yard sale, I was in bed for 17 hours straight. I asked my doctor who on earth has to go to bed for 17 hours after a yard sale (and I wasn't even the one doing the work!) Her response was simply "Lyme patients", with an understanding smile. I'm not used to being so limited. I miss the days of a billion responsibilities. I used to just hop from one job, volunteer assignment, social engagement to etc, to the next. I have had several crying spells since the new drugs started. I can't tell if it is just a side effect or if I'm experiencing lyme induced depression or just depression brought on by my altered life. I just go with it. My jack russell has a new trick to help. When I cry now, she cries with me. It is totally absurd and makes me giggle, often pulling me out of my funk. It's too bad I can't do an impression of how she sounds in this blog, because it is so silly. I love that I find myself laughing and rubbing her belly and pulling out of the crying spells. It's the little things that so often make the big differences.
I started my art class. The teacher made an exception and let me into the already overflowed class. It's a challenge with the body pain and cramping hands, but it is worth it. It feeds my spirit. I love painting and creating. I have already fallen down in class and watched the shocked faces and whispers that followed. Today, I had my shot done and then went straight to class where I began to have a herxing episode while working on my painting. I managed to get myself into the back closet while tremor-ing to hide till it passed. When I emerged from the closet, there were staring, concerned faces pointed in my direction and some questions from curious classmates followed. One guy actually asked me if I was having withdrawals! Haha. I hadn't thought of it looking that way. I explained to him what was happening and reassured him that I was fine. One difficult part of all of this is watching the people I love worry about me. I know it looks scary and is hard on people. Last week when I was up North, a very good friend of mine got very upset watching me herx. I want people to know that I am okay and that it probably looks a lot scarier than it is. I wish this didn't have negative effects on my loved ones too. My Dad looks so worried sometimes and I can see this ache in him that I long to take away. It is worse than the actual symptoms sometimes.
Despite the struggle, I see all the beauty and I am trying to stay focused in that direction. That's what matters. Life could be so much worse and in the grand scheme of things, this is not so bad. I'll keep fighting. With friends and support like I have, I have so much to fight with.
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