Never Give Up

“Birds don’t just fly, they fall down and get up.
Nobody learns without getting it wrong.
I won’t give up, no I won’t give in
til I reach the end and then I’ll start again.

This song came up in my memories on Facebook a couple of days ago, as I listened to the lyrics they resonated with me. Nobody learns without making a few mistakes along the way. It’s how we react to those mistakes, that makes the difference in our walk with migraine. I choose to learn from my mistakes and never give up or give in! 

“No I won’t leave, I wanna try everything
I wanna try even though I can fail.
I won’t give up, no I won’t give in
til I reach the end and then I’ll start again.
No I won’t leave, I wanna try everything!”

When living with migraine, there are many times that medication, or other treatment procedures fail, but we can’t stop there. We need an attitude, that says “I want to try and keep on trying, until my doctor and I find, a treatment plan that will work! I will not give up

“Look at how far you’ve come,
you filled your heart with love.
Baby you’ve done enough, take a deep breath.
Don’t beat yourself up, don’t need to run so fast
Sometimes we come in last, but we did our best”

Yes, I’ve come a long way in the last three years, if someone had told me four or five years ago, that I would have a Twitter account, I just had my two-year anniversary, with 595 followers, and start a blog. I would have just laughed my head off, because I just didn’t think I was capable of doing either of those things. Looks like I proved myself wrong!
Living with chronic migraine and other chronic pain issues, I’ve learned that there are days that I need to give myself a break. Take a deep breath, not beat myself up, there’s no need to run so fast. You can only do your best, but be willing to try everything, with the help of your doctor to manage your migraine. Never give up and never lose HOPE! 

“Never stop dreaming,
never stop believing,
never give up,
never stop trying, and
never stop learning.”
― Roy T. Bennett

Live with hope,
Roni

 

The Good, the Bad, & the Ugly

I couldn’t start a blog with this title, without giving you the iconic theme song to the movie. If you listen, there are some moments that feel a lot like migraine, especially the wild sounding screams. I read that the writer of this song, also conducted the orchestra that played the entire theme song. Very brilliant! This movie also launched Clint Eastwood’s movie career, he was a hunk! Anyway on with my blog. 

The Good

September 5, 2017 I was admitted to the hospital for DHE, Thorazine, and Magnesium Infusions, to abort a long cycle of Intractable Migraine. One that I had been dealing with for quite sometime. My infusion treatment was started then delayed, due to poor IV access, but I will talk about that later. I was in the hospital for nine days, during this time, I had many opportunities to speak with the head resident on my case. I go to a teaching hospital and I always make an attempt to speak with the residents, about migraine to see how much they really know. Some of the residents are just doing their Neuro rotation, while others are actually going into Neurology. Which the head resident on my case was, she was very pleasant and actually interested in some of the ways that I try to manage migraine, besides just medication. For instance biofeedback and meditation, being an advocate for myself, having started a blog, because I find it cathartic and creative. The only thing that bothered me about her, was she smelled like she bathed in garlic. She is from India, so I imagine they use a lot of garlic in their food. The nurses are always willing to learn and ask questions, if there is something they don’t understand about migraine. One of nurses asked me the difference between, status and intractable migraine. She said that she never really understood it, so I happily explained it to her and she was thankful. Advocate whenever and where ever you can.
Something else good that happened while I in hospital, was receiving two wonderful gifts! A darling Teddy Bear, with a balloon sent to me on National Teddy Bear Day, by a very good friend and fellow migraine sister! They really have a day for everything. I named him Teddy, not very imaginative, but he just looked like a Teddy! You can see for yourself! This might sound silly, but Teddy was a real comfort to me, during my stay. Mr. Howell isn’t the only one who finds comfort from a Teddy Bear!! Also a gorgeous bouquet of flowers sent anonymously, thank you so much my fairy migraine sister!

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Teddy 

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The Bad 

The bad, oh boy the bad. By day number eight I realized that my head pain wasn’t going to get any better than it was. I went into the hospital with a pain level of nine, by day eight it was a four. Up until this admission my baseline pain level had always been a two. It had been this way for several years and I had learned to live with it. As I will learn to live with this, but the initial realization, really hit me hard. I cried, something I almost never do. My nurse Tess, a sweet, yet spunky gal, told me “I can’t help you with your pain, but I can give you a hug.” Which she did, a nice long one, that made me feel so much better. It still brings tears to my eyes thinking about it, she went above and beyond her nursing duties, Tess used her heart and I will always be thankful for that!!
I honestly don’t know what is going on with my migraine, I’ve been chronic for seventeen years. Now it seems as if I am more intractable, than status. My headache doctor recently increased my preventive, but its only been about a month and half. He is out of the office until the beginning of October, then I need to make an appointment to discuss this. I still have hope, will always have hope, no matter what, I will never, ever give up on hope! 

The Ugly 

The ugly got really ugly and very painful! My peripheral veins are shot, from years of DHE infusion treatment. I liken it to Liquid Drano, it is so harsh to your veins. Over the last twelve years, I have had; three Port-A-Cath’s, one Hickman, one IJ line, numerous Central lines placed in my neck, as well as several PICC Lines. As our veins don’t really care for foreign objects, being in them for a long time. You can often develop blood clots, from any of the Internal lines I mentioned above.
As it seems that I am a natural-born winner for, all things one in a million(I really should play the lotto)my first Port had to be removed, because of sepsis. Due to a nursing error, during a dressing change. Yep, you heard me right, a dressing change. I am allergic to adhesive and tegaderms are pure adhesive. I am eternally grateful to whoever invented, the tegaderms with Hypafix on the edges. It still makes me itch, if it has to stay on very long, but it doesn’t tear or cause blisters on my skin.
During this dressing change, when the nurse removed the tegaderm, it caused a skin tear. That wasn’t so bad, but when she redressed it, she put the new tegaderm over the skin tear. In a couple of days I noticed that, the skin tear was weeping and a called the doctor’s office. The nurse told me, that was nothing to worry about, that was supposed to happen. Didn’t make much sense to me, but hey she was the professional and I was just the patient. I know a great deal more now and will always stand up and be my own advocate, when I think something is hinky. When I went for my next dressing change a week later, sure enough, the Port site was infected. They left the Port de-accessed and started me on a broad spectrum antibiotic, this was Thursday. Saturday I notice a small amount of drainage when I removed the scab over it. Sunday night before we went to bed, I felt feverish, took my temperature and found it to be one hundred and two. I told my husband, took some Advil and said if I still had a temperature in the morning I would call the doctor. Seriously I don’t know what I was thinking, I think the fever was already messing with my thought processes.
That is the last thing I remember until waking up in the hospital on Wednesday morning. My husband came home from work and found me in our bed, I had never gotten up and I was totally unresponsive. He really wasn’t sure what had happened, whether I had taken too much of my medication or the Port. He called 911, when they got me to the hospital and were checking my vital signs, it was discovered, that my temperature was 105. There is no way to know how long my fever had been that high, very, very scary!
The Central and PICC lines were for short-term use, but the Ports were for long-term use. Though it didn’t exactly turn out that way, with one I developed a blood clot in the brachycephalic, which caused my neck and face to swell up horribly, this was on the right side. Another Port on the left developed a clot neat my collar-bone and my Hickman malfunctioned, needless to say all of these devices had to be removed.
Due to all of the PICC, Central lines and Port’s, I have a Chronic SVC blockage, this is the main vein that they use to thread each of these devices, into your heart. The only IV access I have left to me, is my femoral veins. When I arrived on Tuesday the special department in radiology was completely swamped and the other team from ICU was in the same boat. They gave me the choice of waiting until the next day, with no meds started or have the IV team try to start a line. I opted to try the IV, because I didn’t want to waste an entire afternoon and night, with no treatment. OMG, the medication burned so bad, I’ve not had a regular IV in years. It felt like Frank’s Hot Sauce was being injected into my IV. Shudder! Then came the last injection that hurt so bad, that I told the nurse to stop!! The IV Team had covered the site with a white netting sleeve, because of the position the IV was in. But it was also covering up the fact that my hand was swelling and the IV was infiltrating. It took six days for the swelling to go all the way down, I was able to get my Mother’s ring of that hand, took a lot of lotion, but no way was I going to have it cut off. That was a Christmas present from Nathan several years ago. My hand is still sore, surely that will get better with time. They paged the Stat Nurse to see if she could restart an IV, she was able to find a vein on my left hand and it remained viable, until I was able to go to Radiology later that morning. One good thing about having an IV in when I went for my femoral line, they were able to give me Versed and Fentanyl during the procedure, which was very nice! I finally had my line in and we could get going on my infusions, but basically the first day was a bust.

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Rash after IV removed!

 

 

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If you’re thinking, OUCH! You’re right!!

Just goes to show you, that even with the best laid plans, there is always something that can throw a monkey wrench into the mix. That is pretty much life with migraine in a nutshell and you just have to learn to roll with the punches.  Whether they are good, bad, or ugly!  

“The music of hope is everywhere, but to hear it, you need to ignore the muddy jangle of life’s hassles.”
― Christine M. Knight, Life Song 

Live with hope,
Roni

 

Migraine! A Sneaky Creature

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Right now this is what I imagine to my brain to look like, all fired up and spreading pain, not just through my head. But also through the rest of my body, fibromyalgia flares. nausea, stomach cramps, light sensitivity, allodynia, aphasia, brain fog and the list goes on.  Like I said they are sneaky!! The tummy troubles have been the worst, next to the head pain, I haven’t been able to eat more than a few bites of solid food in over two weeks. I can drink liquids, so I’m staying hydrated and drinking protein shakes, to add some nourishment. As no sustenance can only make the migraine process worse.

You probably thought I forgot all about you, but I haven’t. I spent nine days in hospital, for DHE, Thorazine and Magnesium infusions. I went in with a pain level of a nine and came home with a pain level of 4. This was quite disheartening for me, my base-line pain level has been two for many years. I will admit that I cried, when the realization hit me, and I never cry. My nurse was in the room at the time, she is very sweet and spunky! Tess(my nurse)told me “I can’t help with your pain, but I can give you a hug!” Which she did, a nice long one that made me feel so much better. Just knowing that someone cared! The hospital I go to have the best nurses bar none, it is also a teaching hospital. Everyone I come in contact with, has always been awesome and I’ve been going there for ten years. That’s quite an endorsement! 

I have another blog cooking, just as soon as I feel a little better so I can do it and you, justice. I will write it, I don’t like putting out anything but my best, hopefully this blog was up to snuff! I love the verse below! 

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson 

Live with hope,
Roni

Self~Care

We talk about self-care a lot, taking time out to look after ourselves and our health. But how often do we really do it? What does it take to make us stop and see the big picture? The one in which we see are future and how not taking time out for self-care, has taken a horrible toll on our bodies.
death
I know, it doesn’t get as bad as all that. But then again, it could! Migraine is a Genetic Neurological Disease, that affects our brains in so many different ways. And which organ do we rely on to keep our bodies going? The brain! So to take a cavalier attitude, when it comes to our health, when living with migraine is not wise at all. The same time I was in the hospital, so were two of my migraine sister’s. One with hemiplegic migraine and the other with intractable migraine, each one fighting bravely determined to conquer migraine, so they too could live life out loud. 

““If you ask me what I came into this life to do, I will tell you: I came to live out loud.”
― Émile Zola 

We shouldn’t live life with migraine, as if we were wrapped in up in bubble wrap either. There does come times when, by its nature migraine kicks us in the teeth and flattens us. I’ve been going through such a time and by golly I haven’t liked it one little bit. I just got home today, after spending nine days in hospital, trying our best to tame an intractable migraine. I have good news and bad news. Good news; I went into the hospital with a pain level of 9. Bad news; I came out of the hospital with a new base line pain level of 4, instead of 2. I have to admit, this was tough for me to swallow, very tough. Yes I cried, something I never do, but thanks to a lovely, spunky nurse, who offered me a hug, I felt much better! Despair cannot creep in, HOPE and despair will not live together.

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After three weeks of less than desirable sleep, nine days of two to three hours at the most, while I was in the hospital. I feel like the walking dead, actually I’m surprised that this blog is coming together. I’m so glad it is, because this is really important to me. I am going to practice what I am preaching, self-care. For the next two days, I am going to rest, sleep(OH please God let me sleep), relax, meditate, read, anything that doesn’t involve going online for anything! No email, no texting, no Instagram, no Facebook, and no Twitter! By then I should feel human again, my heart will be ready for sunshine and flowers. Living life to its fullest with migraine as I can! 

“Do more than belong: participate. Do more than care: help. Do more than believe: practice. Do more than be fair: be kind. Do more than forgive: forget. Do more than dream: work.”
― William Arthur Ward


Live with hope,
Roni

Poker Face

“Can’t read my,
Can’t read my
No he can’t read my poker face
(She’s got to love nobody)
Can’t read my
Can’t read my
No he can’t read my poker face”

I thought I was done blogging for a while, since I’m going into the hospital tomorrow. Well it turns out I’m not! My head specialist is at a teaching hospital and it is an excellent hospital, with some of the BEST nurses ever! So I deal with a lot of residents, who are doing their Neurology rotation, they are overseen by the Neurologist, who is the attending on the floor at that time. And who has the ultimate say so. 

The University also has a patient portal, where I can sign in and look at all my clinic notes, lab work, request refills, make appointments, leave emails for my doctor and read inpatient H&P’s and Discharge Summaries. They just created an app for your phone, so convenient. 

Now let me get to the reason for this blog. When I am in pain, with a migraine attack, I tend to be very stoic. After 17 years of chronic pain, migraine, fibromyalgia that stays in flare, more times than not and degenerative disc disease throughout my spine, you learn to deal with the pain, however you can. My way is putting on a poker face, but if you look into my eyes, they tell the story. What really ticks me off, is to read my H&P(History & Physical)and see that the doctor has written, patient appears to be in no distress. Are they not listening and are they not looking!! It is obvious they know little about chronic pain and as residents, they better learn, it is a wide-spread problem! This is where stigma can come from, doctors who don’t understand chronic pain from many sources, most of all migraine. 

I am very blessed to have found my headache specialist, he listens, and works with me in formulating my treatment plans. He has a great sense of humor, is soft-spoken, both of these things are a lot like myself. Has a mind like a steel trap, he can recall things dealing with my medical history, from 10 years ago. He is patient, kind and caring, most of all, he has never given up on me! And I have had doctors do so, because I was “too complicated” for them. Yes, I am a challenging migraine patient, mostly due to all the allergies I have and other health issues. But he has never made me feel as if I was too much of a bother. In my book he wears a halo! 

“P-p-p-poker face, p-p-poker face
(Mum mum mum mah)
P-p-p-poker face, p-p-poker face
(Mum mum mum mah)”

Enjoy some Lady Gaga, the inspiration for this blog, at least the poker face portion! 

 

“A person who truly loves you, is someone who sees the pain in your eyes. While everyone else believes the smile on your face.”  Author Unknown

Live with hope,
Roni

 

Songwriters: NADIR KHAYAT, STEFANI GERMANOTTA
© Sony/ATV Music Publishing LLC

Fight Song

“Listen baby, ain’t no mountain high,
Ain’t no valley low, ain’t no river wide enough baby
If you need me call me no matter where you are,
No matter how far; don’t worry baby
Just call my name; I’ll be there in a hurry
You don’t have to worry”

Now you’re probably wondering why I choice this song, as my fight song? It’s pretty simple really, when you think about lyrics. When living with migraine, you are never truly alone, or you shouldn’t be. I have my awesome husband, who supports and loves me unconditionally. My migraine sisters who are never more, than a text, PM or phone call away! Even when they too, are dealing with extreme pain of their own. The Migraine Management Facebook Support group, which is full of lovely people who respond positivity, to your posts. 

“My love is alive
Way down in my heart
Although we are miles apart
If you ever need a helping hand,
I’ll be there on the double
Just as fast as I can
Don’t you know that there”

Yes, most of us are miles apart, but that doesn’t keep us from supporting, encouraging and inspiring one another. The last few days have been hellish for me, I’ve been in intractable migraine for a month. Between the head pain, allodynia of my scalp, extreme nausea, photophobia and an ungodly fibromyalgia flare, life is downright miserable right now. That certainly doesn’t mean I’ve lost my hope, no siree Bob! I just tied another knot to it and keep on hanging on!!
I am scheduled to go into the hospital on Tuesday, September 5th, for infusion treatment. After my last visit and the horrible reaction I had to  the Depakote infusion, my headache specialist and I, had to come up with a new plan. As the DHE infusions are not working on their own anymore. We nailed that down yesterday. I am usually inpatient 5-7 days, so this will be my last blog for a bit. I will miss talking with you, very much! Enjoy listening to my fight song, what’s not to love about Marvin Gay?! 

“Don’tcha know that there
Ain’t no mountain high enough,
Ain’t no valley low enough,
Ain’t no river wide enough
Ain’t mountain high enough
Ain’t no valley low enough”

 

“Take a shower, wash off the day. Drink a glass of water. Make the room dark. Lie down and close your eyes.
Notice the silence. Notice your heart. Still beating. Still fighting. You made it, after all. You made it, another day. And you can make it one more.
You’re doing just fine.”
― Charlotte Eriksson 


Live with hope,
Roni

 

Songwriters: Nickolas Ashford, Valerie Simpson · Published by: Lyrics © Sony/ATV Music Publishing LLC