Complications

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March 9, 2016 IVIG (hopeful)

If you follow me on Instagram or if you are a personal friend then you know that 10 days ago my world imploded. And with the collapse of my health, so went the ground from under us. At least that is how it felt.

It was was ugly, profoundly painful, frightening and sad.

Wednesday, March 9th, I had an infusion called an IVIG treatment. Simply, IVIG is an intravenous method of boosting a patient’s immune system with a mixture of plasma from mass donors.

It works for wonders for many people, several of whom I know.

However, when it goes wrong, it can go very wrong. And that is what happened with me.

I got the treatment because my immune system is severely suppressed. Our immune systems are made up of different types of cells and antibodies. Most people understand that White Blood Cells (WBC) are part of our immune system. In my case, my WBC have not always been reliable because of the leukemia. Now that the leukemia is in remission my WBC count is healthy so that part of my immune system is working well.

Another critical part of our immune system consists of antibodies which fight off infections and viruses. Two of these are Immunoglobulin G (IGG) and Immunoglobulin A (IGA). My IGG level is 386 (normal levels are 694-1618) and my IGA is 36 (normal is 81-463).

That part of my immune system is terribly low and it is why I was unable to fight off the respiratory infection from November through January.

The chemotherapy I take is doing it’s job by keeping leukemia in remission. Unfortunately, it has wiped out my immune system and left me wide open to viruses and infections. For this reason, even though I am back in remission, I usually have to stay at home to avoid germs.

I have been home for the majority of the past 1-1/2 years and I am lonely. You would be too.

One way that people with suppressed IGG levels thrive is by boosting their immune systems through IVIG treatments.

My oncologist was reluctant to try IVIG with me because she was concerned that I would have a severe reaction. However, now that I am in remission from leukemia, I have started to re-enter the community. With my re-entry, I have occasionally had the initial symptoms of respiratory illness again. Recently, when I became symptomatic, my oncologist decided that we needed to try the IVIG.

Going into the procedure I knew that I was at risk for complications because I have a history of migraines.

According to the site nufactor.com, “serious side effects can include acute renal failure, thrombosis, Stevens-Johnson syndrome, serum sickness, aseptic meningitis and anaphylaxis. ***The most severe form of IG-related headache comes from aseptic meningitis, and in fact, patients with a history of migraines appear to be more susceptible to aseptic meningitis. Symptoms, which are severe and similar to meningitis, usually begin a few hours after treatment but can occur up to two days later. They can include severe headache, photo sensitivity, chills, nausea, vomiting, fever and painful eye movement***.”

I hoped and prayed that I would not have adverse effects. However, over the past 15+ years I have learned that God’s answers to my prayers are not always the responses I wish for; nor do they typically play out on my timeline.

Frankly, I don’t understand (fade to me crying)…

The morning of my infusion, my oncologist gave me a prescription for pain medication just in case I started to feel poorly. 24 hours later, not only did I feel poorly, I became wicked sick with the severe side effects of serum sickness.

I was working via telepractice and my headache escalated into a pulsating migraine. The pain was so intense that I was unable to formulate thoughts, words or sentences.

I cancelled my last client. I took Imitrex, pain medication, antihistamine, nausea medication. I lay on our bed with my head on ice packs. My lips began to swell, my eyes turned a glassy shade of shade of pink. Light felt like sharp glass causing me to squint and ultimately close my eyes altogether. My body shook with a low grade fever. My were neck and back were immobilized by pain. By the time I realized that this was more than a migraine, the office of my oncologist was closed.

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March 10th (Serum Sickness)

 

When I called the cancer center, the paging operator put me through to the oncologist on call. Gratefully he knew exactly what was happening to me. With a calm and compassionate tone, he directed me to go to the ER where he was working that night. I was to tell the ER staff to page him and he would give them instructions on how to treat me; he would tell them how to make the horrific reaction stop.

My husband drove me to the ER where we stood in a long registration line and were told that there would be a 3-1/2 to 5 hour wait. I was in a 9/10 level of pain.

When you are in that much pain, you don’t care what you look or sound like. Due to my medical history, I have been at that pain level more than once; the response is primal.

I held my head in my hands and sobbed, I rocked back and forth, I prayed nonsensically, I begged for help, I clawed at my hair and at my husband.

Since my chief complaint was severe headache, a nurse did look at me while we were in the registration line; he checked my facial symmetry to rule out signs of a stroke. I begged him to page the oncologist as I had been instructed. He brought me a wheelchair and reminded us that there was a 3-1/2 to 5 hour wait. There was no acknowledgment of my plea for him to page the oncologist.

When we checked in, tears streaming down my face, I asked the woman at the registration desk to please page the oncologist. With no response to my mention of the oncologist, she told us that there was a 3-1/2 to 5 hour wait. My husband wheeled me to a remote corner where I continued to claw and sob and pray and rock. The pain was horrific.

This was not my worst ER experience. I have been through so much worse, specifically with Crohn’s disease. But the fact that I have been through worse does not diminish that what I went through 10 days ago was almost too much to bear and I feel defeated.

Because I have been both a healthcare provider and a patient for the majority of my adult life I am a forgiving patient. The past 20 years have taught me that even under the best circumstances things can go wrong in the hospital; I have been on both sides of that coin. There are things that went very wrong 15 years ago when I got Crohn’s disease, 9 years ago when I got leukemia and last Thursday night when I had a serum sickness reaction to an infusion that could have sent me into shock or death.

From the moment we got to the ER, I followed directions and told all staff we encountered to page the oncologist on call. After telling 5 people, one nurse finally heard me. She was not even my nurse. She was the nurse who had been sent to me after my first nurse could not get my veins to thread around an IV needle. For various reasons veins will blow out, roll and refuse to thread. This is frustrating for nurses as they need to get IV’s into their patients so they can get labs, fluids and medications started. Thursday night, I was dehydrated and my already small veins, which have been scarred from years of IV’s, refused to cooperate for the first nurse.

I have been through all of this so many times over the past 15 years. During some hospitalizations, my veins have been so worn out that I have been reserved for the IV team; their job is to find veins in the most complicated patients. I know what it is like to have a line inserted into my heart because all the other veins just won’t behave adequately anymore.  And I know what it is like to have a nurse in an ER dig through bleeding skin in a search of veins that refuse to thread despite my desperate pleas to stop.

Understandably, my nurse was stressed; it was a long and  hectic night in the ER. But in her pursuit of my veins, I felt like she forgot that there was an actual person attached to the bleeding arms in her hands. Her level of annoyance with my veins with palpable. She finally left the room in what was later described by another staff member as a mess: needles on the counters, blood on my arms and the sheets. I felt stripped of dignity.

Something that is very hard about being a patient is that when your body is not working correctly, when you are the source of frustration, you feel guilty. Regardless of how much pain you are in, you still feel responsible for the stress of everyone around you.

That nurse did however send a more experienced nurse to my bedside who sat calmly with me. The second nurse spoke in a soothing voice. My veins relaxed for her and she threaded one without pointlessly shredding skin. She cleaned the blood that the other nurse had left behind. I told her about the oncologist on call and she expressed anger when she learned that nobody had paged him. She stepped outside the curtain of my ER room and we heard her page the oncologist. Within minutes, he returned her page and she came back to my room with a plan.

That night, I watched my heart-rate escalate from the 60’s through the 70’s, 80’s, into the 90’s and occasionally drop down to the 40’s. While I was not the most complicated patient in the ER, I was in distress. Even though the staff knew that I was having a serious reaction to an infusion and they followed the protocol provided by the oncologist, they continued to speak to me as a migraine patient because I have a history of migraines.

My husband found sheets for me, he stroked my head. He gave me ice chips. He rubbed my neck.

Some relief came late that night when the oncologist’s protocol was put into practice: IV steroids and pain medication. Even with the protocol, I left the ER in a 5/9 level of pain but that was certainly better than a 9/10. More than anything, I was terrified that the medication would wear off and the the 9/10 pain level would return.

The doctor sent me home with a prescription for oral prednisone which I took with antihistamine and pain medication for a few days.

I slept hard the first 2 days after my ER visit. My face was white and swollen. My sleep was fitful and I was drenched in sweat. It was the type of sleep that accompanies the breaking of fever. I remember my phone ringing, texts coming through; everything sounded so far away and I was too exhausted to respond.

When I finally did begin to wake up, my heart cracked wide open in sadness. My oncologist had called me and explained that I had Serum Sickness.

“Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.” –Medline Plus

Serum sickness can cause a person to go into anaphylactic shock, it can cause death. It is a serious complication and I will not be able to have this treatment again.

Everyone has really hard times and I know that my personal tragedy just that: my personal tragedy. I also know that I have got to move forward however I am having a very hard time doing it this time.

Five days after my ER trip I turned 44. This has been a difficult birthday for me. I am trying to make peace with the reality that despite my efforts to be healthy, I have been sick for many of my adult years.

15 years ago I had a profound onset of Crohn’s disease. I remember the hospitalizations and pain and procedures. I remember mustering courage and praying and sleeping with a Bible in my bed.

I was told that I was fortunate because I was getting my “thing” out of the way early; people told me that everyone has a “thing” (crisis) and I was getting mine as a young adult which would leave me with a long and healthy life. I took hope in that. I held onto the idea that there would be years of health ahead of me.

And there have been short bouts of normalcy but for the most part, I have been in a battle for health ever since I got Crohn’s 15 years ago.

And I am tired.

Writing usually helps me sort through my emotions and I typically end my blog posts in gratitude or even with an inspirational thought. But I can’t seem to find it this time. Instead, all I can think to do is to ask you to please pray for me. I am so tired.  Thank you.

 


Full Moons and Migraine Headaches

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jessica and chris beach trip

Tonight we will have a super moon which means that today I have a wicked bad migraine.

Migraineurs (people who get migraines) have different triggers and full moons are on the list.

If you are a migraine sufferer than you probably know that we all have different triggers so a full moon may not bother you.

Scientists and doctors are not certain of the reason that migraines can be triggered by the lunar cycle however a few theories and facts surrounding the issue include the following:

  1. The full moon can disrupt sleep; changes in sleep patterns (even by an hour) can trigger a migraine.
  2. The full moon can change levels of serotonin. Serotonin is a major player when it comes to migraines; when the levels of that neurotransmitter change, a migraine is often triggered.
  3. Some women’s menstrual cycles revolve with the moon.
  4. We are ~80% water and changes in the atmospheric pressure (the barometric pressure) affect us: more babies are born during full moons, ER visits increase significantly and yes, some people get migraines.

Today has been hard,  I have been super sick.

Years ago, I would have been in the ER for a migraine this bad but I have learned how to manage them at home. That is not to say that the ER is a bad option because sometimes it is the correct place to go.

I am sharing my day with you in hopes that you can get some ideas of how you might be able to feel better when a migraine knocks you down.

  1. I took my maximum dose of Imitrex.
  2. I have been eating rice with sea salt because the sodium helps the carbohydrate get into the blood faster. Carbs boost serotonin—> serotonin is important in stopping migraines.
  3. I took some Ibuprofen (which a crohn’s patient is not supposed to take but desperate times call for desperate measures). Since I do have crohn’s disease, I limited my dose of Ibuprofen and made sure to take it when I was eating the rice to aid in protect the lining of my gut.
  4. I have also taken stronger pain medication prescribed by my neurologist.
  5. I have taken nausea medication.
  6. I have been drinking caffeine, water and ginger tea throughout the day because each of these are helpful for my migraines.
  7. My dear husband headed over to the my new favorite place, Raw Juice Boutique, to pick up a custom-made smoothie for me: coconut water, kale, apple, ginger and a little honey.
  8.  I have been using my Fascia Blaster (which was created by one of my childhood friends Ashley Black) to work on releasing my fascia that is knotted up and painful.
  9. I currently have an ice pack on my upper neck area and a heating pad on my lower back (a trick I just learned thanks to one of my Instagram followers @shans_world) ❤

I feel like today (and this post) is a good example of how some days are really hard. And it takes western medicine plus a holistic approach to get me stable.

Wellness is a lifestyle, it is not a quick fix.

green smoothie

my custom made green smoothie

 

As hard as today has been, I must remember that just last week my mother said that I am healthier than she has seen me in years.  Overall, I am getting better.

#WellnessIsALifestyle and you may be surprised at how much you can do to make yourself feel better with a few changes ❤️


Cake, Chronic Pain and Dignity

The other day I watched the trailer to the movie Cake in which Jennifer Aniston portrays a woman who lives in chronic pain. I watched, held my breath and burst into tears at the end of the trailer when Aniston says, “I am in…a lot of pain ” and one of the therapists who is working with her says “do you want to get better, really?”… “i do”…

I don’t know the entire story line of the movie. I assume that my path is different than that of her character. However our journeys are similar that I understand the what is required to answer the question, “do you want to get better, really?”.

It has taken me 2 decades, horrific amounts of pain, and humiliating moments of being treated poorly to really understand that question.

Yes, I do really want to get better. I am working as hard as I can to heal.

The Washington Post reports that it is estimated that over 100 million people in America suffer from chronic pain. That is a lot of people and chances are, you know a person who is fighting the silent battle.

It is such an easy thing to judge because pain is one of those things that all of us have experienced but once it stops, we forget how awful it really feels. When you live with chronic pain, you feel absolutely horrible for months, years without any significant relief.

This morning I read 2 articles which I wanted to share because they are helpful in understanding chronic pain.

This first article offers a good, easy to understand education on exactly what chronic pain is and it also offers a lot of HOPE for how a person can get better.

This second article offers some very helpful and realistic suggestions on how to interact with a person who is battling chronic pain.

In my experience, the episodes of pain have waxed and waned over the past 20 years.

And overall, I am much better because I have learned how to manage the pain.

However it has taken me 2 decades to learn to manage chronic pain (and I am still learning). It is a very real condition and if you do not deal with it from the inside out, from head to toe, from day to night; if you don’t change your lifestyle and address it–it will destroy you and your relationships.

You can get better.

Aside from wanting to get better, the biggest start to getting better usually comes from another person believing in you.

Which is why I think that it is crucial for society to understand how real and prevalent chronic pain is. If people can find the ability to show compassion and offer dignity vs. judgment, it can help a person come out from under chronic pain. It is a slow process and requires immense patience.

That usually means that a group of people will be part of the care-taking because it is all too much for one person.

The other thing that is really, really important is that the person in pain needs to be seeing good doctors. When I have been in pain, we have always made certain that a family member or friend has accompanied me to doctor appointments because illness makes it impossible to hear everything. In addition, the doctors benefit from having a 3rd person in the room to validate experiences.

If a person does not have friends or family available, hospitals and communities do offer advocates and/or caregivers that will attend physician appointments with a patient.

I’m a big believer in therapy. Living with crohn’s disease, leukemia and chronic migraines would be impossible if I had not had times when I talked to people who are trained in grief counseling.

Steering a person who is living in chronic pain toward therapy and good physicians is tricky because you don’t want to come off as judgmental but it is possible if you win their trust by loving them through the messiness of it all.

Even though chronic pain is difficult to understand, if you do know someone who battles it, pray that you will have compassion and wisdom with that person. Pray that you will know how to offer dignity to them.

This is the thing with chronic pain–it is so embarrassing. Because I have lived with it, I have met so many other people who live with it. Every person that I have met in this circle has confessed that they also feel humiliated and ashamed for being a burden to so many people.

I can’t tell you what works for everyone but I know that giving a person dignity, giving them patience and making them feel like their life matters goes a tremendous way towards their healing.


Expect the Unexpected

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Bone Marrow Exam Room (with a view)

…raw…today i feel completely devoid of strength and hope…

 I slept very little last night and when I woke this morning, tears were on my cheeks. Images from yesterday’s bone marrow biopsy played through my mind and I realized that I had forgotten the biggest challenge of being a patient: to expect the unexpected.

I have been in remission from leukemia for 6 years. And the Crohn’s disease has been in remission for the majority of the past 9 years. Basically, I have forgotten how hard it is to be a patient.

Yesterday was a brutal slap back into the reality of how hard it is to be a patient. And I don’t want to be a patient; however it seems that right now I don’t have much of a choice.

The cancer clinic is in a different  building than it was back in 2007. And while this newer more expensive building might be brighter and shinier to some people, I miss my sunny spot seat in the old office. I miss the old system. I have never liked the new building and, and yesterday only made me dislike it even more.

The practice I am with recently merged with another practice. Any adult understands that you don’t merge offices, departments or companies  without a lot of stress.

In addition to the merge, my procedure took place on a Friday afternoon.  Fridays are hard in hospitals. I am not currently working in health care, but I have spent the majority of the past 19 years working as a speech pathologist (speech therapist) in hospitals. Fridays are unpredictable and often run long. Not only was yesterday a Friday, it was the first Friday after the holiday season (after 2 oncology systems merged) so the staff were tired and I get it.

I am a pretty forgiving patient because I understand that working in healthcare can be both rewarding and emotionally draining, so when I saw fatigue and stress on the faces of the staff yesterday I tried to take it with a grain of salt. However, it was a bumpy ride. There were steps that were forgotten and had to be done at the wrong time and apparently I have had so many procedures over the years that my tolerance for twilight sedative is so high that it no longer sedates me.

I felt everything.

Suffice it to say, when procedures are universally recognized as being very painful, that is because they are very painful.

While they pressed me down and drew samples of fluid and bone from my hip, I squeezed the nurse’s fingers so hard that I was shocked to see they were still attached to her hands when the procedure was over. Tears streaming down my face, they coached me to breathe until I finally screamed “I hate this so much” and they kept saying “I  know, we are almost done”…”breathe”….

When it was over, they rolled me onto my back so that my throbbing hip would press against this sealed pack they made to cover the puncture. I felt embarrassed and apologized for my emotional outburst during the procedure. They said “you were not cursing at us, that is what usually happens”. My heart was hollow as I thought of the many, many times I have said that exact same sentence to my patients or their family members. That may sound funny coming from a speech pathologist, but you have to understand that most of my patients were recovering from trauma so they were in and out of various states of consciousness, they had broken bones, they were often on ventilators; all of which meant that the things they had to do during evaluations or therapy would often trigger enough physical pain or fear that they would act out. Yes, I have had many patients curse at me.

I totally understood what the staff were saying to me yesterday: “we had to do the procedure, it hurt, you screamed, understandable, move on”.  and i felt so small…

While my sister was driving me home, my husband prepared a cozy fire, he washed and dried a new pair of super soft pj’s for me, he got things we needed from the store. He was ready to help make me comfortable. As soon as she pulled into our driveway he came out to help us. I was so broken that I did not even speak. With his help, I limped into the house. I asked for time alone and changed into the soft pj’s in complete silence. About an hour later, I hobbled to the kitchen. I turned around and literally just fell into his arms sobbing, while I told him bits and pieces about how hard it had all been.

As if the events of yesterday had not been tough enough, I ended up with a very bad migraine last night triggered by the medications at the hospital, dehydration from the day and the fierce pain of the procedure.

It was late, I was in bed and my entire body was shaking from the pain of both the migraine and bone marrow exam. I had taken so much medicine that I could not take anything else. I had nothing left but to bury my head into an ice pack and beg God to grant me sleep. I remembered the day when He seemed to audibly pronounce the word “strength” off the coaster across the counter-top at my parent’s house.

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I wondered just exactly how much strength was God trying to say that I will need? I don’t know right now. I know that we are at a huge pause and should know more soon.

Today things have been so dark and sad.

My hip is starting to feel better but I am still really crushed in spirit. And truth be told, I am scared. Yesterday they gave me the recent labs and the level of the leukemia marker. The number and spike from my visit a month ago felt like a sad exclamation point on my heart showing that the leukemia marker was back. The graph was higher than it has been since I have been looking at it (7 years) and for the first time since remission it said in capital letters, bold print

DETECTED

I wish we could go a million miles away. I wish I could be healthy again, I wish we could go out and have fun.

I am sure anyone reading this understands that trapped feeling of desperately needing to breathe but not being able to escape a situation, because it happens to everyone, just different circumstances.

On the bright side, I actually had what I am calling a miracle. The crohn’s pain is gone. So many people have been praying about that very specific thing and it stopped. I did not go on steroids, nothing changed. I just woke up yesterday morning and it was gone. And that is not how crohn’s works. I have lived with it since 2001. And it does get better, but not that fast. I am not eating salads yet (because I don’t want to end up in the ER) but I have been able to add toast and even homemade chicken salad for lunch. Which means I got to “cook” today. And I love to cook. So while it was really just very basic chicken salad, I still got to mess around with ingredients. And that took my mind off of everything for a while, and I was able to eat it, pain free.

Today we took our Christmas tree down (I think it is understandable that we are running late this year). As I wrapped ornaments I tried so hard to absorb the words “joy” “peace” but they just rolled off of me; they did not even bounce off me, just rolled away, they never even engaged. I did try. I need those words to engage with my spirit. Please pray for a renewed sense of strength, hope, faith, joy. I need to get my fight back.

Wrapping it up in gratitude

Today I am grateful for

  1. My husband’s love
  2. My sister’s company yesterday
  3. My family’s love
  4. These soft pj’s
  5. I can eat again

***My husband just called me to the window, 3 deer were in our front yard, they were beautiful***

5. I am grateful and feel happy that I got to see those 3 deer


My Story

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I have had headaches since I was a child; my mother even took me to a neurologist while I was in high school where I was told “don’t chew gum with artificial sweeteners”. For the most part, I complied, granted I was a teenager. I was diagnosed with migraines in my 20’s when I started having to go to the emergency room for horrific headaches. I was later diagnosed with chronic daily migraines.

My 30’s took a very unusual turn and I spent at least half of that decade in and out of hospitals with chron’s disease and leukemia.

Today, I am a healthy 42 year old woman. I take 2 types of chemotherapy and other medications (including several for migraines). All of my previous illnesses are in remission and if you met me, you would never suspect that I had been sick a day in my life.

Alas, the migraines persist. I have been on (almost) every preventative medication available. I follow a migraine-friendly diet, I get Botox shots in my scalp and shoulders every 3 months, I have spent years giving myself shots, taking prescribed steroids, and recently added acupuncture to the migraine control plan. And, yes, each piece of my migraine control plan has offered a bit of relief:  less frequent/less severe migraines. However I have 20 years of migraine diaries which reveal the same thing: on average 5-6 headache days out of 7 days. That is a lot. And usually I have 3-5 days out of 7 which are absolutely excruciating.

I write to feel better and really cannot recall a time in my life when I did not write.

My parents are amazing and I would probably have not survived the trials of my 30’s were it not for their unconditional love. My sister is my best friend (and I am lucky because she really is that good). I have a fabulous husband who puts up with all kinds of diet modifications and somehow acts like they are sort of interesting.

We have a 4-1/2 year old dog named Jackson who is our baby. I love him and am slowly falling more in love with him. I fiercely loved my former dog, Creecy, who you will read about in my posts.

Mostly, I laugh. Despite the complexity of trying to schedule a “normal” life around doctor appointments, chronic illnesses which (thank God) are in remission, really bad migraines….

I laugh and can get a case of the giggles pretty easily.

I thank God every day for all that He has given to me, because I have more good than bad in my life.

And I am learning that it really will all be OK.


My Daily Dose of Joy and an Acupuncture Update

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Our Evening Walks

Migraines (actually 3 serious illnesses) have taught me to try to do something pleasant every day, even when I am in pain. Lots of hospitalizations and  too much time spent sick, in bed, have taught me that it is healing to do something pleasurable each day. Of course there are times when I am in too much pain to get out and of course there are times when I have to force myself to get out despite pain; however I am usually able to do something even on the bad days. Chronic pain can make a person feel hopeless and robbed of life’s joyful moments. Finding something pleasurable that you can do daily helps you feel a small bit of control, and that goes a long way in beating pain. Hubby and I enjoy our evening walks with our 4 year old pup, and that is an activity that I really try to do regardless of pain level. It is good for us as a couple, and it is good for my personal sense of well-being. Sometimes, if I am in a lot of pain, he and I will go for a very short walk only to turn around and have me go to bed. While that seems sad (it just does) he and I still get some satisfaction of getting me out there, not totally caving to defeat.

Another thing that I absolutely love to do (so I try to do it daily) is to cook…it relaxes me.

So, the acupuncture….

It is helping me and I am thrilled. We decided that I would give it my all this month, so I am going twice a week. I have been 4 times and all of us (my family in addition to me) are seeing positive results. I am having headache free days and when I do get a migraine, it eventually stops. That does not sound like a big deal to most people but it is a marked improvement for me. A few days after my 2nd treatment, the headache that I had just “stopped”. I had taken minimal medication for it ~ 5 hours before it stopped and as the evening passed, I noticed that the headache went away–I did not have to take more medication. I looked over at my husband and said “the headache is gone, it’s over, it stopped”. He and I were surprised and cautiously hopeful. The next morning when he woke me up, the first thing I said was “I don’t have a headache”….again, he and I felt cautiously hopeful. I was completely headache free that day.

This past week I have been on my menstrual cycle. And, yes, I have had menstrual migraines but I have been functional and able to participate in life. Prior to the acupuncture, my cycle was typically a miserable 1-1/2 weeks spent in and out of bed with horrific migraines. This time, I had a 72 hour migraine and then, it stopped. Just like the experience I had after my second treatment, the headache just stopped. And, though I am still on my cycle, today I woke up headache free.


Status Migrainosis and a steroid pack

fall of 2013 YellowButterflyGirl

fall of 2013
YellowButterflyGirl

My favorite season has arrived. And it came in with a bang for sure.

The migraine I mentioned on my post 2 days ago turned into one of those horrific 9/10 (actually 10/10 but I did not end up in the hospital so I will keep it at 9/10 on the pain scale). It was scary because no medications were helping). And I was taking some strong meds prescribed by my neurologist as rescue meds. I called the doctor to let him know that it was my 16/22 days headache day, which is way too many as I got the botox tx on that 22nd day.

I lived through the night and woke up yesterday relatively headache free, but I was back to that horrible “feel like I have been in a terrible accident” hopeless, raw place. I have been in a terrible cycle for several months and at least one night/week my husband spends the entire night helping me survive the unrelenting pain and nausea (and light sensitivity, noise sensitivity, smell sensitivity). I don’t want to admit it but I have been in Status Migrainosis for a while. Status Migrainosis is a serious condition that (this is a broad definition) is when a migraine persists > 72 hours and stops responding to medications; there can be small bits of reprieve (which is what I have identified as me NOT being in status migrainosis).

Bad things can happen during status migrainosis and I have spent years pretending that I didn’t have periods of that. But I have and as I said, bad things can happen (which I don’t want to discuss on today’s post). Most importantly, the migraine cycle must be stopped.

I prayed and prayed that the day would bring some hope.

I did get put on a new treatment plan, which helped with the hope factor (although it comes with concerns that I am trying to not think about right now). The neurologist put me on a 6 day steroid taper that is used to break migraine cycles when the migraines are ongoing and seem to stop responding to medications. I have taken steroids in the past–back in 2001 when I had that horrific onset of chron’s, I was on steroids for > than a year, it was one of the only things that the doctors could use to stabilize me. I had a very hard time coming off the pred (they had me decreasing it by .25 mg—-very slowly) because I wasn’t doing well with the taper. Mostly, it was extremely hard on my mood.

So, I am praying that this pack will work and that I won’t have to go back on the steroids again. Next week, I will begin receiving dry needling in hopes that it will help me (it’s similar to acupuncture but done by a Physical Therapist and has some differences from acc—too much to get into right now). I just wanted to update all that has happened over the recent days.

So, God I pray that you will guide me through this change in treatment plan…and please let it all work…

Now, I am off to focus on work-as in my job.


Ouch :-(

Photo Credit: Istockphotos

Photo Credit: Istockphotos

Woke up in the middle of the night with a bad migraine. The weather is ~glorious~ and a cold front has come through. That is probably a big part of this migraine. Other triggers: decreased caffeine, possibly last night’s supper (I made chicken fajitas with all migraine friendly foods–but I did eat American cheese, which I can usually tolerate, maybe it was too much given the other triggers of yesterday).

Regardless, I had to have caffeine + Tylenol this morning (I have a job and cannot let this headache interfere, but it hurts, pretty badly). God please give me strength to get through this…


status post 10/10 migraine and still shaking…

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Fragile. Raw. Defeated.

those are the words right now.

Last night I had one of the 10/10 migraines and it was horrific. I am not in pain this morning (thank you God). However I feel like I have been in a terrible accident. I am due to start my menstrual cycle any day now and as neurologists have told me, menstrual migraines are the hardest to control. In addition, to my hormone levels, there was a bad storm last night. Those are triggers I cannot change.

More than anything, I feel completely done, like I can’t keep fighting for health. I know this feeling, I have had it in the past and I am sure that most migraineurs also know this feeling…the feeling of total despair, the inability to keep going, the absolute frustration that no matter how hard I try, how clean I live, how much I avoid triggers, my days and nights and plans get pushed around by migraines.

Oh I pray for help. God has done so many miracles in my life. I pray that He will lift my spirit and give me the courage to keep going. I pray that today’s botox treatment will work. I pray that I will be the fun and happy wife my husband married 5 years ago this weekend. I pray that I will be able to 100% enjoy our anniversary trip. God, I ask you in Jesus holy name, for help. I need encouragement and your strength to keep going.

 


migraine day

So yesterday I was surprised to wake up headache free following a day of sheer indulgence. Around 3:30 yesterday afternoon I started feeling extremely sleepy which is a fairly common migraine aura for me. Sure enough, migraine started about 45 minutes later. At the same time, a severe thunderstorm started within the next 1-1/2 hours.

I am one of those migraineurs who believes in the theory presented by Dr. David Buccholz in the book Heal Your Headache: The 1,2,3 Plan For Taking Charge of Your Pain. It is a controversial book and theory among migraineurs. I read it years ago when it was first released. One of the things he suggests is that we all have a migraine threshold and that once we have enough triggers stacked together we will have a migraine attack. He also explains that reactions to foods can be difficult to identify because a person may not even respond to a certain food trigger for up to 3 days.

Over the years, I have followed many diets and I have figured out which foods seem to consistently cause problems (remember I have almost 20 years of migraine calendars so I have been taking notes for a long time). While some foods will bring on an immediate migraine (bananas, red wine, balsamic vinegar…) I can get away with other problem foods occasionally. I believe that is because for various reasons, I have not met my migraine threshold. Yesterday (and the day prior) is a good example. There are times when that huge splurge meal (see yesterday’s post) would trigger a migraine within hours. However, I made it through the day, night, and following day without a hint of a migraine until just before a really bad thunderstorm started. I think that the amount of triggers met my threshold.

I was actually pretty sick all night and I am struggling with it again today. So, not the best day. This is the worst migraine I have had over the past 2 weeks since the Petadolex started kicking in; thus I really should not complain—however when a migraine is throwing punches, it is hard not to complain.

I am working and trying to finish up a little early so that I can lie down later…hoping headache will be gone soon. As for today’s meal plan, I just ate 2 pieces of gluten free toast with honey. In my experience, eating carbs tend to help me feel less sick when I have a migraine.

Back to work…