Starting a Blog

So today I finally became a blogger -- after weeks of thinking about it.
Caring family and friends have been asking me how things are going as I stopped sending out mass updates months ago... it is so hard to explain that things are more or less still the same. And, no, no one knows why I have this headache. And, no, there is no treatment plan. And there is no estimate for a recovery time. And some days all of the no's and the unknowns are too much to talk about.
Thank you to my friend Dawn who suggested I read Larry Crabb's book "Shattered Dreams - God's Unexpected Path to Joy"... I haven't been able to get past the Author's Note that begins the book. 
    The dream of good health is an obvious one; it's visible and measurable, like dreams of a great marriage, fulfilling vocation, or sufficient income. And obvious difficulties call for obvious responses to manage the problem, to make it go away or to keep your sanity if it doesn't. Get a second opinion, find a good counselor, train for a new job. Obvious shattered dreams keep alive the hope that there are ways to manage the crisis and get through without falling apart with something that will help you feel better, at least for a season. (p. viii)

Today I am having a hard time not falling apart. Even typing this paragraph made tears spring to my eyes... 
Today I have started this blogging part of my journey... I'll let you know how it goes... 


Note:
If you are just catching up on my headache news, you may want to read the previous "posts" that I copied from my email and private Facebook messages.

New Doctor -- email to a friend

I am just about to start a blog about my headaches -- so caring friends can "check in" without feeling like they are bugging me. I will let you know when that evolves.  

Things are pretty much the same over here, pain-wise...  The neurologist has decided it is NOT a migraine and has begun the process of withdrawing me off those meds (which is good, because they - and more depression - helped contribute to regaining weight  ). They want to try Botox injections to block the nerves at my next neurologist appointment on Feb 5. 
I have an MRI booked for May 31 (!) and am on the cancellation list... 

I got referred to a naturopathic chiropractor in the NE - she is totally worth the drive. Her methods and my body's responses will be a big blog, but the summary is that my body is letting her adjust me in very specific ways and in very small increments and I have had some huge emotional gains through her approach. 
Dr Terry believes I am suffering from Post-Traumatic Stress Disorder (PTSD) and suggested I get targeted counselling. 
I took an online questionnaire and I scored "extreme".  So Alex contacted the support program through work and I saw a psychologist this morning - for free (!). It was just a background info session, and she has encouraged me to find PTSD group therapy services offered by Alberta Health. Dr Lushington has Christian beliefs - as I determined through probing statements - and she had a lot of positive feedback on how I have made healthy strides in life... 

Still suffering around a 6/10 on a constant daily basis, with significant spikes if I try to do ANY activity... driving is a stressor but I need to pick up the girls from preschool and drive to my appointments, and it has been over four months since I have been able to do any shopping. I usually struggle through the day until Alex gets home, and then I crash in bed right after dinner -- with ice packs stacked all around and on my neck, head and face... 
Regular life events tend to really push my pain - like the girls struggling through colds and sniffles this past week... Thankfully the puking sickness a couple of weeks ago only lasted a day and a half, and missed me and Alex completely. 

So, I think that is about where I am at... 

Frustrated -- email to a friend

No progress. Actually, we are back to step one. The neurologist has definitively decided that it is not migraines, so now they are slowly backing me off all of those meds -- which is great because with their help (and my emotional eating) I regained 50lb. ! :,(

My next appointment with the neurologist at CHAMP is set for Feb 5 -- they are going to try Botox injection on the nerves. ... and they booked me an MRI -- for May 30!! As I am not considered an urgent patient... which I understand, but still frustrated with. 

But they have no idea. No medication has helped. No treatment has had any benefit longer than two hours. And any physical or cognitive activity causes more pain.

 
Waking up at about 6/10, two hour nap in the afternoon, and I am in bed by 8pm with ice packs on my head. Alex parents all weekend and every evening when he gets home so I can rest as much as possible to try and make it through the weekdays. On the weekends he also plans the meals, does all the grocery shopping, and does prep work for the weekday dinners. He is getting very exhausted... and it is frustrating to be able to share in so little of the load... and with no end in sight... *sigh*

Man, I feel like I am whining, but it is a realistic view of our lives at the moment...

Challenged by Day-to-Day -- mass email update

Hello again Friends and Family. 

It has been a while since I updated you on how I am doing, mostly because nothing has really changed. I have been challenged by the day-to-day routine and am barely managing on my own... by the time Alex gets home from work, I am usually crashing and heading to bed to try and recover enough to be up the next day. 

Catherine and Cecilia have started going to preschool Tuesday and Thursday (same school, different classrooms). Alex will drop them off and then head in late to work and I will pick them up after their two hour class...Driving is a significant trigger for my headaches, so I have eliminated all unnecessary trips... for the last month I was only out of the house twice a week - once to Massage Therapy, and once to church... now the new schedule will be: Monday – chiropractor, Tuesday & Thursday – preschool pick-up, Tuesday evening – Massage Therapy,  Sunday – church.  I/we are trying everything we can think of to reduce the headache peaks so that I can function and take care of the girls, trying to maintain a sense of  family routine. 

Recently I heard back from the Booking Clerk at CHAMP (Calgary Headache Assessment and Management Program) and I now have an appointment on Tuesday September 25 at 8:30am. After I called in and spoke to one of their nurses last week, the Neurologist requested an urgent appointment as my headache requires more investigation that cannot wait until my previously scheduled “next” appointment in November, which is a relief. They did not want to further adjust or change my medication without an in-person consultation. On Tuesday I will be talking to the nurse for about an hour before I see the neurologist so they can get a clearer picture of my situation. 

My chiropractor also dabbles in some naturopathic medicine ideas and also does a lot of his own research into his patient’s ailments. Specifically, he thinks it is possible that my headache could be caused by low progesterone, which could have been triggered by low good cholesterol... so I bought the month-long saliva hormone test... the results will take a week after I submit the package in a month’s time. 

God is good. All the time. I am thankful for the warm messages and prayers. And we have had meals delivered from church families... And we are richly blessed by the visitors we have -- they help in so many ways: making meals, sweeping floors, playing with the girls, taking them to the park, ... We are surrounded by love.  :) 

Thank you for your support! 

More Headache Procedures -- mass email update

Hello again family and friends!

It has been a while since I’ve been in touch with you and let you know how things are going.

The week following my last update, I had a bloodpatch procedure. After consulting with the CHAMP nurses over the phone, the neurologist called me directly and suggested that either I had a CSF Flow leak that was undetected or the Flow Study may have given me a leak. Dr. Eloff set up a the bloodpatch to be done the next day (Friday August 10). 
The procedure went well but did not resolve my overall headache. (The resident who performed the epidural bloodpatch stated that this type would only repair a leak if it was a result of the CSF Flow Study.)  
FYI, the bloodpatch involved an IV for fluids, a different site to remove 20mL of blood, and an epidural needle in my lower back to inject the withdrawn blood – it is supposed to form a type of scab around the spine and stop the leak... if there is one.

So now, as far as I know, all that can be done has now been done. 

I have followed up with my family doctor to discuss my medications and what else I could or should be doing: more bloodwork, other specialists, dietary changes, etc.   His opinion was to defer to the CHAMP neurologist’s expertise in this area, and he says there is nothing more to pursue from his office. My next scheduled appointment at the CHAMP office is in November.

I have been able to see some improvement in my headache. Through weekly massage, much rest, minimal activity, and regular medication, I am able to keep my headache to a 5/10! Praise the Lord! (If I increase activity, reduce rest and/or miss a dose, my headache quickly increases to a 7/10.) Thankfully, we were able to hire a wonderful twelve year old nanny (Emmie) to spend the work week with me and the girls at home for the remainder of August. 
September’s routine is still an unknown and we are discussing what kind of help we need, can find, and are able to afford. I am trying not to worry about tomorrow or next month, and am praying fervently for wisdom, direction, strength, and patience.

Thank you for your love and support and prayers! We have appreciated the many ways that God has touched us through the people upholding us: answered prayers, childcare, many homemade meals and desserts, cards and emails, hugs, and encouraging words. Thank you for ministering to me and my family through this difficult time.

Many Thanks -- mass email update

Hello again Family and Friend Family!

I have much to be thankful for this week.

1)      I came home to my family after a good visit with extended family.

2)      Grandpa is out of the hospital again – after multiple infections and complications. He is resting and adapting in the comfort of his own home, with the comfort of my parents’ proximity (upstairs).

3)      The CSF Flow Study procedure on Wednesday went well.  

    a)      Mom was able to come back into town to care for the girls, before returning home on Thursday.

    b)      The procedure was not as menacing as we originally anticipated. The freezing for the spinal tap injection was the most painful, although laying stick still for so long was arduous. For two hours I had to lay still as they took pictures every 15 minutes – I was very thankful for the mp3 book I had downloaded onto my iPod. Then, after a pee break, I had to lay still for 40 minutes for the 3D image that concluded in a CT scan.

    c)       Even the return visit Wednesday night to the ER at Foothills Hospital was a blessing...eventually. I was able to try a new medication (Sumatriptan) that seemed to help a little, and we got the verbal results of the Flow Study:

        i)        No leak

        ii)       No infection

    d)      We are able to check this off as done and no longer a concern.

4)      My massage therapist Kendra is able to reach parts of my headache – and possibly alleviate some of it... still adjusting to see what is the necessary pain to achieve the gain... I was blessed to be able to see her twice this week as I missed my appointment last week with my changing plans.

5)      We are enjoying a wonderful long weekend. We have not ventured from home, except when Alex ran out to the grocery store twice. Our girls were excited to have their bath in our outside turtle pool last night, and they delighted in our backyard picnic all day today – pool fun, hot dogs in the shade from a sheet, more pool fun, family nap in our beds, even more pool fun, freezies, hamburger dinner... We were able to have some special time without the stress of leaving home, as even a walk to the park is still a journey for me. It has been a splendid day.  

6)      Loving family and friends that are now family. Thank you for your prayers and support!

I am humbled to have so many big details to be thankful for, as there are innumerable small blessings that I need to remember to note.

Next on my headache journey? Keep on keepin’ on. I am waiting to hear back from the CHAMP nurses as to how to possibly work in the new medication, but their office won’t reopen until Tuesday). I will be making a follow-up appointment with my GP to go over the written results of the CSF Flow Study – and wait for my November follow-up with CHAMP.  I continue to keep my headache journal and life details so that information is at hand if and when needed. ... I will take advantage of the summer and hire one of two nanny teenagers that our girls love to help out on work days. Praying for and about September. ...

:)

Lots of Activity -- mass email update

Hi there family and friends! 
This week was more eventful than was expected. 
My headache has been strong, even with the special migraine medications. 
Last Saturday was a tough and beautiful day. I was able to go shopping in the morning, attend a beautiful wedding ceremony with Catherine and Cecilia, and then Alex and I were able to attend part of the reception. I was ecstatic to be able to share in this joyous event and to celebrate with such wonderful friends. It was hard to make the call to leave early as my headache became severe... we paid our wonderful babysitter as if she was there until 10pm as originally planned, although we were home at 8:30pm... 
Sunday brought sickness in our girls so we stayed home and cuddled them and helped them through the yuckiness, and I was able to rest a lot and try to recover from Saturday and prepare for the week on my own.
On Monday I called the CHAMP nurses at Foothills Hospital and did a phone consult about the ineffectiveness of the medicine. After the nurse met with the doctor, we had a discussion and they have prescribed two additional pills: Amitriptyline (10mg - to be increased to 50mg) and Chlorpromazine (25mg). So far those meds have helped me to be calmer and sleep more, which was why they were prescribed -- I had been only sleeping five hours a night because of the pain, and now I have been able to get up to eight hours last night. :)  ... We also called our good friend who contacted her 12yr old niece to come and stay with me and "nanny" the girls with me for the week. She is such a great help!
On Tuesday, a close friend came visit for the majority of the day, and it was nice to have our "nanny" watch the kids as we visited and crafted. Also, the CHAMP scheduling nurse called to confirm my CSF Flow appointment: Wednesday August 1. I have to be at the Foothills Special Services Building - Nuclear Medicine at 9:30am. The test starts at ten and is scheduled to last between two to six hours (after which I get to go home -- although I may need to go back after 24hrs and maybe 48hrs, depending on what they see and need to see). I will be receiving a spinal tap and then dye will be injected and then xrays will be taken to document the progress of the dye through my spinal fluid. Thankfully it is not a nuclear dye so I do not need to be put in isolation, and it is an outpatient procedure so I will be able to sleep in my own bed. I am concerned about the procedure itself, the dangers of a spinal tap, the possibility of an ER visit (and bloodpatch?) from the consequent headache, and all of the unknowns. Mom will fly in next Tuesday so she can take care of the girls while Alex is at the hospital with me. 
On Wednesday Grandpa had a stroke. It was a minor stroke but all health issues for a person over 80 can be major. I hadn't seen Grandpa in almost a year and my heart ached to hug him... so Alex flew me here to Vancouver Island on Wednesday night (my cousin Melissa travelled with me and pushed my wheelchair in the airports and through the hospital). Flying was a horrendous ordeal for my headache, but my heart was happy to be able to see Grandpa in the Duncan emergency room and to hug and kiss him and tell him that I love him. (And we said goodbye for now to our "nanny".)
Grandpa has still not been released although each day they keep saying it will happen tomorrow. Thursday morning I waited for him here at Mom and Dad's in the morning (and went for a nice forest stroll with Dad), and then visited with him in the late afternoon in his hospital room. 
Today we went to Walmart in the morning to get some treats for Grandpa's house while we waited to hear the conclusions of the echocardiogram that they performed on Grandpa in Victoria. And this afternoon I rested while waiting for the announcement of his discharge... we are still waiting... it is 6pm and we are about to have dinner and cake to celebrate my brother's birthday. I wish Grandpa was here... we'll have to sneak him some ice cream cake tonight if he is kept in the hospital again. :D
My headache has been horrible. I am not sure if it is the new elevation, or the new medication side effects, or the traveling, or stress, or a new normal... Today I started at 6/10 and have been steadily increasing - I am sitting at a 8/10 right now, with a dull aching helmet and a searing hot pain across the crown of my head and a throbbing in my brow and eyes... 
So that is the low-down, up-close-and-personal story of my week. 
Thank you for letting me share my heart and life with you. I am sorry about the impersonal-ness of this mass email, but it is easier to share with all of you I care about at the same time. 
Thank you for your love and support -- we appreciate your messages, hugs and prayers. 
:) 

CHAMP -- first mass update

Hi there family and friends!

I had my CHAMP appointment today (Headache/Neuro Clinic at the Foothills Hospital).

I saw the first nurse for 15min, the Neurosurgeon (neurologist?) for 40min, and then another nurse to learn how to administer my own medication injections.

The doctor was a classic specialist: very clinical, regimented and judgmental – and very efficient, knowledgeable and determined. She believes that I am suffering from either or both 1. Classic migraine headache and/or 2. Low pressure headache, and while I wait for a further test (CSF Flow Study), I will be taking medication to address both types.

My new medication regimen for the classic migraine will involve twice a day injections of medication (DHE), an anti-nausea pill (metaclopramide) before each injection, and an anti-inflammatory suppository (indomethacin). To address the low pressure headache, I will take a preventative medication (amlodipine) once a day at 5mg for two weeks and then increase to 10mg. I cannot begin this treatment until all of the medicines arrive at the pharmacies. I should be able to pick them up tomorrow afternoon so I anticipate beginning on Saturday morning. 
There are many possible side effects for each of these medications and I am hoping I do not develop any more drug allergies, so Mom will be monitoring me closely. This weekend may be difficult as I suffer withdrawal from the Percocets and adjust to new prescriptions.

The test for low pressure headache is a CSF Flow Study, which involves a spinal tap, dye and tracking the dye through my nerves to see if there is a leak. If so, then I will require one or more “blood patches” (no idea yet what that means). It is possible that the Study itself could cause a severe headache that would require ER attention and a consequent blood patch. ... I think it is likely that the majority of my pain is due to this type of headache as I identify with a lot of the symptoms: increased pain with increased exertion, and relief from lying down. (http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/old/low_csf_headache.html)

I will wait for CHAMP to contact me with my CSF Flow Study appointment date. My follow-up appointment to return to the clinic will be in four months. For now, I am to focus on the new medications and continue to track my headache pain, and call the CHAMP nurses if I have any concerns and/or questions.

 So, now am on step one of the CHAMP journey... as I continue my life journey at the same time ... focusing on finding healing right now... I will continue other therapies as well: chiropractor twice a week, acupuncture once a week, next week I’m having lunch with a female Christian counselor, and I will look for another massage therapist.

Feel free to email or message me questions if you have any, and I will send updates when there are any.

Thank you for your love, support and prayers.

Headache talks from June emails

June 30, 2012

Things have been tough here. I have been suffering with an extreme, constant headache since the end of April. It averages an 8/10 on my pain scale. I wake up with it. I go to sleep with it. And it will wake me up in the night. I have been in and out of my Dr's office on a weekly basis, and even went to Emerg once -- at my doctor's assistance. I have been going to the chiropractor and acupuncture once a week for the last six weeks, with minimal relief (lasts for up to two hours after each appointment). I went to a massage therapist for three weeks, but he seemed to aggravate it.

I have had bloodwork done, and x-rays, and a CT scan -- they all have come back acceptable - no "weirdness"... but no diagnosis. ... I am healthy, but in excruciating pain. 
I am now taking two Percocets every four hours to try and distance myself from the pain. Ibuprofen worked a little at the beginning, and Tylenol 3s stopped being effective a couple of weeks ago.

I just got notified of my appointment with the Chronic Headache/Neurology Clinic at the major hospital here -- July 12. As I am considered an emergency case, I got in in a month -- the average patient takes 10 months to get referred in.

My dad has come here twice, for a week each time, to take care of me and the girls so that Alex could continue to go to work. Taking care of the girls is a challenge by myself. 
Alex is amazing! He is so loving and supportive, in every way imaginable. He takes over everything when he is home. He is getting exhausted. The girls pray for me to better every night at dinner. 
I am physically and emotionally worn and weary.

And now it seems the pain medication is developing an ulcer in my stomach so I have to be very careful how, what and when I eat... Things are tough.

                                         

June 6, 2012

So my CT scan on Monday was quick and painless. 
Alex has taken the mornings off of work to take me to my appointments as driving worsens my headaches.

Today was my followup with my GP. CT scan was normal. Nothing of concern -- no need for an MRI. The doctor wants me to stop the diet (I've been on for the last 9months) for a week and see if it reduces my pain, but he refilled the T3 prescription too. I have a follow-up appointment with him next Friday. Going back to what my family eats as of today and no more pain meds. Will assess my pain level in three days, then try Ibuprofen and progress to T3s if necessary.

Alex and I aren't really surprised by this conclusion, and we are relieved there was no weirdness on the CT. Going off the diet before reaching the set goal (the scientific BMI says I have 25lbs more to lose) is disappointing to me, but it is fine if it means no headache -- I want my life back! And a 110lb loss is still good... and I keep reminding myself that I've already met my original goals: I smile at the mirror, and I feel I can be a healthy example for our girls.

If necessary (no change in headache over the next week), my doctor will refer me to the headache clinic... and/or send me to the emergency room so I can get an immediate consult with a neuro specialist...

June 1, 2012

I am still suffering from my severe headache. My dad came out last weekend to help take care of me and the girls while Alex is at work. Mostly he has been taking care of the girls and household chores while I rest and try to cope. My Dr has me on two T3s every four hours and a muscle relaxant three times a day -- and that takes the edge off my pain. I've also been going to the chiropractor, massage therapy, and acupuncture trying to find some relief -- so far it has been minor and/or temporary. I have a CT scan scheduled for Monday morning, and hoping to have results by Wednesday. It would be really nice to get some answers and receive some effective treatment...  
So we are really wary about making any set plans as it is possible (likely?) that I'll still have this headache ... which makes anything difficult for me...  

Emails about my headache from May communications with friends

May 30, 2012 

Still have the headache but with less activity and loads of rest, I was able to reduce my T3s a little today. My Dad has become like Mr Mom around here -- even helping to potty train Suzanna! And tomorrow he is taking the girls for an overnight trip to my aunt's in Edmonton...! I am feeling truly blessed!

                            

May 28, 2012
I have been having a rough day and lost feeling in my right pinky for a couple of hours, but God truly came through with a HUGE blessing: my dad (from Vancouver Island) surprised us! He is here for a week or two, wanting to help wherever needed. He did laundry today, and took the girls out for a few hours so that I could get some rest. The girls are absolutely loving their time with their Grandpa!
God is good. All the time. Just trying to live moment by moment, and to not let the pain (dark) overwhelm the love (light).

May 25, 2012      
Doc gave me more T3s and a new prescription for muscle relaxants. Alex has just now run out to our Shoppers to get that filled. Acupuncture was painful. He's never seen shoulder knots like mine...  But it is kind of neat to have the tendons just above my heel be the release point for some neck tension. LONG day. Glad to be home. Soon to be in my bed.  Home all weekend, resting... 

May 16, 2012
X-rays show the damage to my neck and back -- no surprises for me.  Any of those issues could be causing headaches, according to my doc. 
He prescribed pain meds and told me to pursue relief (ie: massage, acupuncture, chiropractor, whatever) for the next two weeks and we'll meet again to assess... possibilities down the road of cortizone injections, referral to bone specialists/ pain specialists, or other things -- he says we'll talk about next steps after these steps....
But I can't take these meds as I am allergic to morphine and that is a caution that the pharmacist and the doc missed.  Waiting for the prescription to be changed...

May 15, 2012
Today is a very bad pain day.  Forgot to ask the Dr for meds that might work. 
Looking forward to trying to get some rest while the girls nap -- hopefully the pain won't keep me awake -- it has been waking me up at night...  
Got the bloodwork and x-rays done. One day closer to answers, or more tests anyway...