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!

20170908_174651

Teddy 

20170910_14094420170910_141532_Burst01

 

 

 


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.

20170907_140425

Rash after IV removed!

 

 

20170906_041814

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