Monthly Archives: April 2014

Fearless Healing: Finding Strength Within Weakness

Such an incredible post. I have attempted to say many times exactly what Shelley has managed to say, as if her words came out of my own heart.

Embrace the body's innate healing mechanisms

The world constitutes strength as possessing physical power, societal power, and financial power. In illness, we learn great insight and wisdom on this subject. We learn what most do not learn until they are elderly. Weakness has nothing to do with muscles, fame, or fortune. It has everything to do with facing unimaginable heartache after heartache, allowing ourselves to break down and be human which renders us as desperately vulnerable, and then having the courage to wake up and face yet another day.

In fact, all of the aforementioned attributes regarding the world’s take on strength possess the power to quickly turn themselves into major weaknesses. Furthermore, they possess the power to turn mankind into animals. As individuals facing struggles unbearable to most, we are endowed with the great gift of gaining perspective on such a crucial matter in life.

We change dramatically the moment the doctor mouths a diagnosis…

View original post 424 more words

2 Comments

Filed under Chronic Illness, Uncategorized

Today I am…

Today I am sad. 

Lately I have felt as though I have been getting looks from people because I talk about my soon-to-be-ex; almost as if I should avoid all mention of him as if he were He Who Shall Not Be Named. I feel like people are uncomfortable speaking about him around me, and don’t understand how I can casually bring his name up in conversation and not be upset. Maybe this is just a coping mechanism for me (some sort of denial maybe?), maybe the anger and the hatred it is buried so deep inside me that I don’t even notice it, but I don’t think so.

I think I am just truly and honestly not angry with him. I don’t hate him, and I don’t think I ever will. I don’t have a problem discussing him, or bringing his name up in casual conversation; it doesn’t make me upset for people to mention him to me. When it comes down to it, he was a major part of my life for almost 5 years. He was my best friend, my other half, my beginning and ending. We did everything together, shared everything, SO many of my memories now involve him. For FIVE FREAKING YEARS. Now I know to some of you that seems like a blink of an eye, but to a 24 year old that is a long time…longer than I have ever given to any other significant other. The fact of it is I care about him, I always have and I always will. I don’t hold against him what happened between us; he has his demons and he tried, I mean really tried, to control them for me. He has lived a kind of life that I will never be able to understand, even though I tried really hard too. When it comes down to it we are just different people, with different goals, priorities and attitudes about life. So I am not angry. 

I am just sad. To think about him makes me sad, to think about how we used to be together makes me sad, to think about how the future will be for both of us makes me sad. Yes, I find new holes in my life every day that he used to fill; and I am crying as I write this. Yes, I bring him up in conversations, sometimes a lot; and yes, sometimes it makes me sad to talk about him…but not all of the time. Sometimes it makes me smile to think of the things we have shared, to remember the laughs and the good times (because there were a lot of them). Sometimes I bring him up in conversation, without even stopping to consider if I “should” be talking about him or not, and I like that. He is a part of me, and he always will be. Even if it makes me sad, I will talk about him, and it is ok for every one else to talk about him too. He is not a bad person, and I am not angry. I would rather remember him and the good things, and sit with the sadness as it is a normal part of this process…than bury him and every memory away somewhere in order to avoid feeling a little sad. 

So this is me giving you permission world, talk about him…it is ok. 

1 Comment

Filed under Divorce, Uncategorized

Friday night-life of a Lyme warrior

So tonight I decided to give you all a glimpse of what a typical Friday night is like for a 24 year old battling Lyme disease. Why? Because a good laugh is always healthy for you, and I don’t mind it being at my expense. 🙂

First, take pills and eat dinner (take out of course, because you are wayyy too tired to cook), but make sure it is free of all gluten, sugar, soy, dairy, GMOs, and anything else you are required to avoid. And don’t forget to chug some of this stuff for the 3rd time today…

20140412-003238.jpg

Second, brew both coffee and tea. The tea is to feed your kombucha (yes, FEED. Think of the ant farm you had as a kid, only it’s not ants…it’s bacteria).

20140412-003355.jpg

Next, just go ahead and make that run to Walmart. It’s totally ok that it’s 7:30pm on a Friday night and you’re in your pajamas (it IS Walmart after all).

Just remember while you’re there to buy this…

20140412-003508.jpg

And these…

20140412-003548.jpg

Instead of this or these…

20140412-003707.jpg

20140412-003758.jpg

Then once you get home, grab that coffee you made (it’s cool by now) and head for the bathroom. Yep, you guessed it, it’s not going in the normal way! (For your sakes, no pictures were taken of this portion of the night).

Then, time for more pills!! And if you’re lucky maybe even an injection or two!

20140412-003916.jpg

20140412-003958.jpg

Slather yourself from head to toe with these bad boys…

20140412-004058.jpg

Grab some light reading…

20140412-004227.jpg

And head for bed!! But maybe check Facebook first…if you’re ok with seeing pictures like this from most of your friends.

20140412-004310.jpg

 

All images are real images from my night tonight…except the last which is courtesy of Google. :]

11 Comments

Filed under Chronic Illness, Uncategorized

Healing

I feel like this statement applies to all different areas of my life at the moment.

20140410-161630.jpg

Leave a comment

Filed under Chronic Illness, Divorce, Uncategorized

Knowing my body…

Just because I know my body, doesn’t mean I always like her. Sometimes I feel down right betrayed by her. How dare she have the nerve to look like a perfectly healthy young woman, yet feel like an 87 year old grandma. That’s just not fair.

And then there is the ever present battle inside the chronically ill patient; my mind tells me I want to do something, and that I should, but my body and past experience tells me that I will majorly regret it if I try.

I’ve felt pretty good recently too good. So naturally my brain starts in with “maybe you could try to_____” or “if you just took it really easy…”

But I’ve been down that road before, I’ve taken the chance and reallly regretted it. And then my body decides to drive the message home (just in case I was actually thinking of doing something) with a few days of feeling really crappy and completely out of control of my own body…just to make sure I remember that I am actually not in charge here. :[

So this sequence of thoughts always leaves me feeling down, remembering all of the things I used to be able to do but can’t anymore.

For example, I used to train in martial arts (Tae Kwon Do); I have a 4th degree black belt that took me close to 13 years to earn, as well as an instructorship position, referee certification, and awards from having competed at both the state and national levels. Now I haven’t trained in several years, and can barely make it through the grocery store without wanting to collapse. My two younger sisters, for some strange reason, have decided to take up karate (they’re bored, and crazy lol)…so all of a sudden ALL they talk about is karate this, and karate that. Recently at a family dinner they were going on and on (and ON!) about it, and it got me thinking, “maybe I COULD do that again?” I miss it so much more than I can explain; it is the one thing that I light up when I talk about, and I can talk for hours and hours about it! So I started to get excited; I thought maybe I’ll pull out my uniform, do a little training alone so I can take it as slow as I need to. I can do this!

But nooooo…my body decided I needed knocked down a few pegs. I was getting a little too energetic and optimistic. So it decided to not let me get a decent nights sleep for several weeks now, plus increase my fatigue and pain, and oh let’s throw in some major motor tics too (just in case I started to think I actually had control over my own body!) Not to mention a POTS flare up and some random blood sugar drops, just for good measure.

Thanks body, love you too. :/

15 Comments

Filed under Chronic Illness, Uncategorized

A case of the Mondays and wishful thinking

So it’s only Monday and already my work week is crazed. I work as a nanny, and yesterday (after working 7 hours at my 2nd job) I got home, sat on the couch, and 5 minutes later my phone rings. It’s my boss saying that his wife hurt her knee and they are headed to the hospital and can I come watch the kids? “Well, I’m herxing and I’ve already worked 7 hours today, but how can I say no to that?” So I jump in the car, and then get a call saying nevermind, she doesn’t want to sit in the ER, they will see a doctor tomorrow (today). As far as today goes, needless to say, work is frustrating when you care for children whose parents are home…so this week just needs to be over already.

But what I’ve been thinking about this afternoon is how awesome my boss has been all day. He took the day off work, cleaned the house, chauffeured his wife to the doctors office, is bringing her ice packs in bed and driving all over town to find her some crutches. All this from a guy who is really a great guy, but ascribes to the “women’s work” attitude and tends to come home from work, pour a drink and sit on the couch while his wife comes home from work, cooks dinner, cleans house, cares for kids, and then repeats every single day.

I’m sure that his change in attitude is simply a reaction to how unusual these circumstances are, and will probably disappear in a few days, but it makes me think…I want a husband who will do those things.

I’ve been sick every single day of my relationship with my soon-to-be-ex-husband, and never has he exhibited the kind of take charge, “it’s all going to be ok” attitude my boss is oozing today. If he helped at all, I had to instruct him in exactly what I needed and how I needed it. Also, due to circumstances outside of his control, he could not drive a car, leaving me to drive MYSELF to the hospital/doctors office on more than one occasion when I really should NOT have been driving. He also lacks, for some reason, the maturity to pick up a phone and make a phone call, or be responsible for any sort of life detail (paying a bill, making an appointment, sorting out an issue with the insurance company, making a decision on which cable company to contract with, the list goes on and on), even though he is 10 years older than I am.

I am so not the kind of girl who sits around waiting for her knight in shining armor to ride up on his white horse and whisk me off into the sunset…but I don’t think it’s too much to wish for a husband who can just handle things sometimes. The kind of husband who will recognize that I am hurting more than usual, and take care of me once in a while, because he cares. The kind of husband who will be my partner in life, not just one more thing I need to handle. The kind of husband that I can rely on.

2 Comments

Filed under Chronic Illness, Divorce, Uncategorized

30 things about my invisible illness

Here’s the deal: Paste the questionnaire below into the comment section at the bottom of this blog page and then complete your answers. Because I’m bored. :]

30 Things About My Invisible Illness You May Not Know

1. The illness I live with: Chronic Lyme Disease
2. I was diagnosed with it in the year: 2014
3. But I had symptoms since: 2000
4. The biggest adjustment I’ve had to make is: Changing my diet. That is NOT an easy one for me!
5. Most people assume: That being ill doesn’t effect my life very much, because it doesn’t LOOK like it does, but it doessss.
6. The hardest part about mornings are: Getting out of bed. Walking. You know, those nonessential things.
7. My favorite medical TV show is: Grey’s Anatomy (if that counts as a medical TV show lol)
8. A gadget I couldn’t live without is: My iphone!
9. The hardest part about nights are: the pain. Pain pain pain. Therefore the falling asleep too.
10. Each day I take _+/- 41_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Will consider them if they pass “the logic test”, and have found some to be extremely helpful.
12. If I had to choose between an invisible illness or visible I would choose: I don’t know. I want to say visible, but there are some pros to the invisibility of lyme.
13. Regarding working and career: working is hard as @#$%, and I wish I had a career. :/
14. People would be surprised to know: That I actually don’t hate being ill, it’s part of who I am, and I actually can’t say that given the chance I would change it.
15. The hardest thing to accept about my new reality has been: That I may actually not have fibromyalgia and all of the other conditions that I have thought I had for the last 12+ years.
16. Something I never thought I could do with my illness that I did was: Graduate from college.
17. The commercials about my illness: What commercials? There should really be commercials.
18. Something I really miss doing since I was diagnosed is: Eating, and not thinking about what I was eating, just enjoying it.
19. It was really hard to have to give up: Eating bagels. I looooooove bagels.
20. A new hobby I have taken up since my diagnosis is: None at the moment, but I’d like to take up quilting. :]
21. If I could have one day of feeling normal again I would: NOT take it. That would be some kind of crazy cruel and unusual punishment.
22. My illness has taught me: To never judge someone, you never know what battle they are facing. That perfectly healthy looking young person parked in the handicapped parking space may in fact be battling a horrible invisible disease.
23. Want to know a secret? One thing people say that gets under my skin is:  “You’re not THAT sick”.  Never ever ever compare levels of sickness. Illness affects everyone differently, and while someone may look less sick than someone else, that does not mean they are less sick. Being sick is an awful thing to deal with, regardless of what the illness is or the severity of it; every sick person is fighting a daily battle to survive, and no one should ever downplay that fact.
24. But I love it when people: Call/text/message me to ask how I’m feeling today. It means the world to me to know that someone is concerned and checking up on me and that I can tell them honestly how I’m feeling.
25. My favorite motto, scripture, quote that gets me through tough times is: “This too shall pass”
26. When someone is diagnosed I’d like to tell them: EDUCATE YOURSELF NOW! Be your own best advocate, because no one else is going to do it for you.
27. Something that has surprised me about living with an illness is: I don’t know, I don’t remember what it’s like to not live with an illness.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Keep me company. I hate to be alone when I don’t feel well, for both emotional and practical reasons (but mostly emotional). So just simply coming over and watching a movie with me, to just BE there, is the best thing anyone could ever do for me.
29. I’m involved with Invisible Illness Week because: I don’t think it’s even Invisible Illness Week anymore lol.
30. The fact that you read this list makes me feel: Like I’m either really special or you’re REALLY bored. 😛

– See more at: http://lymedisease.org/news/touchedbylyme/187.html#sthash.906UYiHM.JbrIkxpH.dpuf

Leave a comment

Filed under Chronic Illness, Uncategorized

New diagnosis!

As if I needed more diagnosis’ to add to my laundry list, right?! The thing about these is that they may in fact be the root cause of most of the others! That’s really mind blowing to think about…

Anyway, here is the list of new ones…

Chronic, neurological, Lyme disease

Bartonella

POTS (Postural Orthostatic Tachycardia Syndrome)

Mold toxicity

and Adrenal fatigue

Whew! That’s a lot!

So this past week I embarked on treatment for the Lyme disease/bartonella…the thing about treatment is that chances are you will get much worse before you get better. It involves several different antibiotics, as well as a huge list of supplements and vitamins.

Watch the video below for more information on Lyme and Bartonella.

Overall I had a decent first week of treatment; the first day of antibiotics I experienced what is known as a “Herx” reaction. A Herx reaction is defined as “Herxheimer reaction, n.pr an increase in the number or degree of symptoms caused by a rapid destruction of antigens, cell particles, and toxins, that occur during treatment.” I took the first dose of antibiotics in the morning, and by about 6:30pm when I got home from work I felt strange, but couldn’t put my finger on what was wrong. I took the second dose soon after I got home, and by 9pm I had a headache, was having trouble holding my head up or my eyes open, I felt as though my body did not belong to me, like my brain was shut off and disconnected from the rest of my body. It was like a really bad “trip” combined with high doses of narcotics, and it was NOT as fun as that sounds. But by the next morning it had passed, and I have not had that reaction since.

Today I feel rather crummy, but in a different way. I feel as though I am coming down with a cold, even though I am fairly certain I am not. I ache, I’m tired, my throat is raw, and all I want to do is lay in a cool, dark, quiet room all day (so that is exactly what I am doing as I catch up on my blogging!). I feel as though the rest of the world is too harsh…something about the combination of lights and sounds is simply too abrasive.

As a dear friend said to me the other day “and so the roller coaster begins”.

Here’s to hoping this is the first step on a long road to living a better, healthier life. :]

Links:

Explanation of POTS:

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm

Explanation of Lyme disease/Bartonella:

http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html

http://www.lymedisease.org/lyme101/coinfections/bartonella.html

WATCH THIS VIDEO!

“Under Our Skin”

Definition of Herx:

http://medical-dictionary.thefreedictionary.com/Herx

 

 

6 Comments

Filed under Chronic Illness, Uncategorized

Lessons from a peeved patient

Want to know one of my biggest pet peeves when it comes to being chronically ill? Doctors.

Like for instance, yesterday I went back to my neurologist for a follow up appointment after the 2 MRIs he ordered last week. He pulls up the reports of the radiologist’s findings on his fancy ipad, and says “well, the good news is your MRIs are both normal”.

– FIRST MISTAKE: “normal” test results are hardly ever a “good” thing to a chronically ill patient

“So what do you think is causing my symptoms?” I asked. His answer? “I have no idea”. Wonderful.

*Note: I do believe I know what is causing my symptoms, it’s the chronic lyme disease/bartonella I was recently diagnosed with, but I wanted to see what HE thought was causing them. I did tell him that I believe it is the lyme/bartonella and he agreed with me that that is highly likely, and said good luck with my antibiotic treatment (AMAZING! lol)

He offered to run an EEG to check for seizures; I said “Do any of my symptoms lead you to believe I am having seizures?” He said no. So I elected not to have an EEG, since I think I already know what is causing my symptoms anyway, and have had one in the past with no seizures. As I left the office I requested copies of his office notes and both of the MRI reports, and as I got in the car I started to look over them, as soon as I got the the MRI reports I said “WHAT?! These do not look like ‘normal’ MRI reports to me!”

And I quote “MRI scan of the cervical spine (neck) without and with a paramagnetic contrast agent – Note is made of posterior osteophytes extending off the inferior aspects of the C3 and C4 vertebral bodies…There are posterior extensions of the C3-4 and C4-5 intervertebral disks…there are disc/osteophyte complexes at C3-4 and C4-5 encroaching on the anterior subarachnoid space…there are no MRI findings suggestive of multiple sclerosis… Summary: There are mild spondylotic changes at C3-4 and C4-5 with disc/osteophyte complexes encroaching on the anterior subarachnoid space…”

Now, I know that is a whole lot of medical jargon, but lucky for you I understand what it all means!

The good thing is, I don’t have multiple sclerosis…but I already knew that (for the most part).

Basically an osteophyte is a bone spur, a bony growth that is not generally there in a healthy person; this is indicative of degenerative arthritis…and while they are not always painful, they can be, especially as the joint deteriorates more. According to the report I have these osteophytes on C3-4 and C4-5, which are “encroaching on the anterior subarachnoid space” (the cushion of space surrounding the spinal cord, or the brain)

Image

The summary says that I have “mild spondylotic changes”…spondylosis is defined as “Degeneration of the spinal column, especially a fusion and immobilization of the vertebral bones.”

“Uhmmm….ok?” I also have these bones spurs and “spondylotic changes” in my lower back, so none of this was news to me…I’m not surprised that it is in my cervical spine as well.

Then I moved on the MRI of my brain, “MRI scan of the brain without and with a paramagenetic contrast agent – there is a single focal area of abnormal signal intensity with the central portion of the right centrum semiovale oriented perpendicular to the posterolateral margin of the right lateral ventricle, the etiology of which may be demyelinating, however an ischemic etiology should be excluded, particularly since on the current MRI scan there is an area of abnormal signal intensity within the most peripheral portion of the corona radiata within the anterior superior portion of the right frontal lobe, the etiology of which is overwhelmingly likely ischemic, which was not present on the patient’s prior MRI scan…”

WHEW! That was a lot of craziness! But what does it all mean? Basically it means that there are two bright spots that show up in my brain, and they’re not entirely what is causing them. One of them they say could be from demyelinating, which is the process of removing or destroying the myelin sheath that surrounds a nerve fiber. This is seen in multiple sclerosis, as well as several other inflammatory degenerative diseases (see link at the end of the post). But the other spot is “overwhelmingly likely ischemic”…ischemic means “A decrease in the blood supply to a bodily organ, tissue, or part caused by constriction or obstruction of the blood vessels”, and is new since my last scan 3 years ago.

The bright spots look something like this (disclaimer: this is NOT my brain! Just an illustration of what bright spots look like)

Image

So my question is this, do those reports SOUND like “normal” MRIs of a 24 year old woman to you?!

– SECOND MISTAKE: Leaving out information when relaying results to the patient.

Now, I understand that these things are not “end of the world” issues, but I have a right to know that they are there. Imagine if I had not requested a copy of the MRI reports, I would never have known. I also understand that some patients may either a) have no idea what any of that means or b) freak out over it, or both. But I am not that kind of patient, I KNOW what it means, and I understand that it is not a huge deal. And regardless, as a physician, he should have explained to me what the reports said, and explained that there is nothing to be concerned about.

So, the morals of the story are as follows:

1.) Always, always, ALWAYS request copies of any test results as soon as the doctor has reviewed them

2.) Research everything and understand what the report says for yourself, because the doctor may not explain it all to you

3.) Do NOT freak out. It is normal to be concerned but understand that if it was something fatal or serious the doctor would have discussed it with you.

4.) Just be an informed patient. In the end this is your body, your health, you have to take care of it…no one else is going to.

 

 

http://www.mayoclinic.org/demyelinating-disease/expert-answers/faq-20058521

http://www.thefreedictionary.com/spondylosis

http://www.thefreedictionary.com/ischemic

Image:

http://www.mayfieldclinic.com/PE-LP.htm

http://emedicine.medscape.com/article/338641-overview

Leave a comment

Filed under Chronic Illness, Uncategorized

Just rip the bandaid off

Today was a really hard day…but that is totally the understatement of the year. 

Today I filed for divorce. I did it. Almost 3 months after I told my husband I wanted a divorce, and almost 2 months after I moved out of the house, I finally did it. 

I woke up this morning and said “I need to just DO it. Just rip the bandaid off and get it over with”. So I got dressed, drove the the courthouse, and sat in the car for a minute just attempting to breathe. As I walked inside I couldn’t help but notice the sadness, it was as if the walls themselves were sad, and all the people working there as well. I guess courthouses just are not generally happy places, but the criminal one I used to work in seemed much less sad than this, civil, one did. Luckily everyone was very nice, and as I handed them my paperwork and the exorbitant amount of money it costs to file for divorce, they instructed me to “have a seat on that bench and wait for your name to be called”. So I sat down, and glanced over at the only other person waiting there, a middle aged blonde woman who had her head tilted back leaning against the wall, and tears mixed with mascara streaming down her face. That was it, any composure I had left was gone, I put my head in my hands and sobbed; and together we sat on the bench of misery and cried until both of our names were called.  

I have no words to explain what that feels like, other than death; like my soul was actively dying as I sat there. As I looked at that other woman it was like looking in a mirror, all of the pain, heartbreak and soul death in her face I knew was written all over mine as well; and I found myself wondering, who is she? What, no doubt horribly painful, circumstances landed her on this sad bench? How will she recover from this? How will I recover from this? 

For the last several weeks I’ve been ok; I’ve been cheerful, and moving forward with my life. I thought, “hey, I’m ok, I’m moving forward, I’m going to survive this”. I even counseled a friend of mine who is going through a similar situation as if I was wizened by all of this, as if I had moved on and learned and grown from this; as if I had a few, not all, of the answers. And then I sat on that sad bench today with my head in my hands and realized “I’ve been fooling myself. I’m so NOT ok”. 

9 Comments

Filed under Divorce, Uncategorized