Wrong diagnoses

Well it has been a little over a year since my last post.  It turns out I have a lot more going on than what was thought at first.  Apparently I have lupus which has been the cause of all my problems like the unexplained joint pain and fever and overall feeling as if I have the flu every couple of months or so.  Apparently the lupus has affected the peripheral nerves in my head and face.  I fear that it has been so many years before a proper diagnosis that it is too late and irreparable damage is done.  I experimented more with the kratom and found the right dose.  It was a huge help.  Unfortunately it has now been banned in Alabama so that option is taken away.  I hate taking pain medications.  I swore I would never get back on the long acting morphine again.  It made me have terrible mood swings and rages.  It was a roller coaster of lows and highs with the medicine kicking in and wearing off.  I have no idea what I will do next.

Still searching for that magical cure

There is not much to update really.  It has been almost a year since my last post.  My neurologist told me at my last visit I had the atypical form of trigeminal neuralgia.  Of course I immediately did lots of research.  I am wondering if I actually have all 3 conditions or are some of the doctors wrong??  I am thinking of trying a new doctor but really just don't feel like seeing any! I have still been on Neurontin and I can tell it does help especially with the facial pain.  I can tell when it wears off in between doses.  I am trying something new called kratom, which is herbal.  It hasn't seemed to do anything so far.  I will continue to experiment.  I am also considering trying an essential oil blend recommended to me by someone who has chronic migraines also.  I can still tell the stim does still help just not as well as when it was new.  I just need to fill my toolbox with different things.  Finding the perfect combination is the hardest part though. 

Oh blog, how I neglect thee!   I cannot believe it has been so long since I added anything to my blog.  I have just been very, very frustrated with my headache condition.  I weaned off all narcotics last year because they were affecting my moods severely.  I was becoming so irritable I could not even stand myself!  Without the fog of constant painkillers my headaches came back to the forefront unfortunately.  I have been still on my quest for something to cure me but still have not found the magic solution.  I have tried many herbal and natural things.  I tried leaving many things out of my diet (again).  I kept going back for new programming of the stimulator but have still been having quite a bit of pain so my surgeon asked me to go back to a neurologist to see if he/she would have any more ideas.  I went to a neurologist in my small town because honestly I am just so tired of driving to see doctors.  He, in my opinion, is a jerk.  He tried me on a medication (Vimpat) with a sample kit.  I did have reduced pain for a few days so he wanted me to continue it.  I was happy to try it until I went to pick up my prescription at the pharmacy.  After insurance and after the discount card I received at his office my prescription was over $300 (for 1 month supply).  I just could not afford that amount.  I went back to him and told him I could not afford it so he decided to try me on Depakote.  He kept upping the dose of Depakote until I was finally at the maximum dosage and it was doing nothing (other than making me gain weight unfortunately) so I decided to stop the Depakote.  When I went for my followup and we decided to stop the Depakote he told me he was out of ideas and basically blew me off.  Now I lost my Imitrex connection as he would not continue prescribing it if I was not constantly coming to his office for followups, even though he himself said he did not know what else to do!  I now went to a new neurologist who I am not sure if I like either.  (I am beginning to believe I do not like most neurologists - they seem to be an extremely haughty bunch)  He tells me I am so wonderfully lucky that yes, I do in fact have 2 headache conditions - the hemicrania continua AND migraines.  The migraines seem to be affecting me worse than the HC at the moment.  He did thankfully give me a new prescription for Imitrex and started me on Neurontin.  The first day I took Neurontin it just so happened that I had a terrible migraine and was so sleepy from the medication that I basically stayed in bed all day.  However, the next 2 days were wonderful!  I had really low pain on both days.  I don't know if it was the new medication or just that the weather had completely cleared up (we had severe storms the few days prior) or maybe a combination.  I am trying to keep a positive outlook and hoping the Neurontin will help with the migraines AND HC.  I asked about trying Botox again since the migraine aspect is what is so terrible lately so he is trying to get approval.  He also wants me to get a CT scan since I have not had one in so many years.  I contacted my surgeon's office (the one who did my implant) to see if he needed to do Botox because of the implant.  He believes that a V2 nerve block (that is a branch of the trigeminal nerve) will help me more than Botox most likely so wants me to do that.  I have it scheduled for next week so we will see.  He says that the injections of Botox are so superficial the neuro can do those if I really want it.  I am up for anything so I am going to do it all!  Hopefully I will have some wonderful fairy tale like news next time I post.  A girl can dream, right?

As good as it gets

Yesterday I brought my kids to a birthday party at the skating rink.  I predicted to my husband before we left that I would probably have a migraine by the end of it.  Sometimes I hate being right.  I guess it is the combination of the loud music, flashing lights, noise, etc.  I have been feeling very sorry for myself lately since I have been having so many headaches again recently.  Yesterday after driving home I took Imitrex and basically glued myself to the couch for the remainder of the day.  For some reason I remembered the line from the movie "As Good as it Gets" when Melvin is in the psychiatrist's office and turns to speak to the patients in the waiting room saying "What if this is as good as it gets?"  I feel the same way.  After all the conventional and unconventional therapies I have tried to get rid of or at least decrease the number of my headaches, I feel like I am trapped in this vicious cycle.  Immediately postop after my stimulator implant life was so much better.  I have slowly slipped back into a cycle of nearly constant headaches.  At first I tried pinning it on things such as the weather (which is still a huge trigger for me), certain foods, even being out in the sun too much.  Sadly, the list keeps getting longer again until I am left doubting the list is actually a list of things causing headaches and is actually a list of things I just happened to be doing on the days I had headaches.  I visited my St. Jude rep to adjust the settings on the stimulator and I was prescribed Imitrex, which actually has aborted 2 of my migraines, which I am still thrilled about.  Unfortunately I am still having headaches!!!  I am going back to my surgeon next month for a followup.  Maybe I should ask about Botox again.  Sometimes I think I would like to go to a deserted island for a week but it would be my luck to be stuck on an island full of noisy tropical birds or screeching monkeys!  I just don't want to be the mommy saying "Shh mommy's head hurts" anymore.  Hopefully soon I will find some type of relief.  I guess it's time to do some more research.

My poor forgotten blog!  I have not updated in so long I am ashamed.  After my surgery I had such wonderful relief!  Unfortunately over the past few months lately I have been having many migraines again.  Gone still are the stabs so that is a huge victory in itself.  I am considerably disappointed from having so many migraines again though.  I am currently on day 7 of a daily migraine.  :-(   My rep from St. Jude is on vacation.  He did leave a number on his voicemail for another rep to call while he was out, but since he is going to be back on Monday I decided to wait and contact him since he knows my history, etc.  Hopefully he can make me some new programs that will zap away these hateful migraines!!  If not, I am afraid it will be back to the drawing board for the migraine portion.  I am NOT saying that my surgery was in vain.  It has been a HUGE blessing.  I do not have daily pain anymore as I did for years.  I have many, many headache free days, which was something I only dreamed of before the stimulator was implanted.  I have tried eliminating "trigger foods" but there are still 2 things that cause a migraine regardless of what I eat, do not eat, get enough exercise and sleep, etc.  They are weather changes such as barometric pressure drops before a storm system and hormonal fluctuations.  Nothing I can do about those two sadly.  Hopefully I will find an answer soon.  I did some research about areas with the most stable barometric pressure.  The 2 US cities with the most stable barometric pressure are Honolulu and San Diego.  I also found that the Atacama desert in Chile gets only about 1 inch of rainfall a year.  I tried to convince hubby we need to relocate but he is unconvinced as of yet.  My daughters on the other hand were very easy to persuade moving to Hawaii could be a good thing for the family!

One month post op

I cannot believe it has been a month since my surgery!  I must say that it has been life changing in many ways.  My husband and I brought our youngest daughter on a field trip to a pumpkin patch last week and we had SO much fun!  I probably irritated them by constantly making the remark that my head did not hurt!  It was just so surreal to me.  I have not done anything fun like that without the constant stabbing pain every second and it is a completely different feeling.  We also went trick or treating with some dear friends of ours on Halloween and we had a blast!  I am so excited about going places and doing things I did not feel like doing for years.  I am still being careful though because I do not want to do anything to cause my leads to move.  I did have a little incident where my daughter went a little nutty and it was just me and her so I had to pick her up to make her get in the car.  I am hoping that everything is ok.  Now on certain settings with the stim I have started getting uncomfortable stimulation in my nose.  Yep, it feels really weird like when your hand falls asleep.  I hope that the lead in my cheek did not move around and change position.  My followup with my surgeon is in a couple of weeks so I will ask him then.  I think I am going to ask my St. Jude rep to make me a couple of more programs too.  I am back working part time also and love being back to work.  It is so different now sitting and working without saying "My head is killing me!"

Feeling much better now

It has been about 2 1/2 weeks since my permanent peripheral nerve stimulator implant surgery and I am feeling completely different than my last post.  I have been doing a whole lot more.  I am still being very careful not to do things to cause my leads to move, but I have been up and about a lot.  I no longer have any swelling.  My darling husband has taken out all of my staples and sutures tonight, and my incisions look really good.  I will update photos soon but tonight I am too tired.  I was all worked up ready for it to be excruciating but it was not at all.  My husband was very gentle and did a wonderful job.  I would be completely LOST without him and I owe so much to him.  I feel so completely blessed to have the wonderful family and friends that I have.  I am looking forward to enjoying life much more with these terrific folks.  I have had many mornings that I have woke up with no headache whatsoever.  I have found the trick for me is to leave the stimulator on all night but at a very low setting.  The first time I woke up with no headache I felt like telling the whole world.  It is a completely new experience for me.  I used to wake up every morning to excruciating stabbing pain in my head and wish that I had not woke up at all.  I do NOT miss those days!  I am feeling very hopeful that I am beginning to get my life back.  I really feel that all of the fighting I did for my surgery was so worth it that I would do it again without any hesitation at all.  It was an emotional roller coaster for sure but what a happy ending so far!  I never would have imagined the day I read the first article about ONS surgery how my life would be so changed.  I hope my positive results and many other patients going through the same will help get FDA approval eventually for this wonderful tool for people suffering so badly with head and facial pain.  WARNING:  Topic regarding female issues:  My first major test for the stimulator is my first menstrual period since my surgery.  My periods are my worst headache trigger and usually have me in bed crying for at least two days due to the increased head and face pain.  Not this time!  I was completely surprised when it started because I did not have the blinding headache beforehand.  Now the next test will be thunderstorms.  I am crossing my fingers for that one!  It just happened to be storming the first time I saw my surgeon Dr. Rupert and I was at my worst on that day.  I am nervous and excited at the same time to see how I do through a thunderstorm with the stimulator.  I have eaten chocolate on several occasions since surgery by the way, and it has been just fine.  I love my stimulator!  I am seriously thinking about naming it because it is so dear to me (and my family!).

Recovery is slow

I had my permanent peripheral nerve stimulator implant surgery October 1.  It was not powered up until October 3 because we had to wait until some of the swelling went down first.  I thought I would be feeling fantastic by now but unfortunately I am still VERY sore overall and having a hard time getting around.  I have learned to give up and just lie down because every time I am up and around for any amount of time my swelling increases, which causes more pain.  The headache aspect is so much better though that it is amazing.  I have only had one episode of what I call "the stabs", which the doctors call "exacerbations" since my stim was turned on.  Mostly I am just sore from the incisions and surgery itself.  I am very afraid of having my leads move as I have been hearing more and more stories of that lately so I am taking it VERY easy for as long as possible.  My husband has been extremely amazing throughout all of this.  I would not have made it without him.  My youngest daughter has been so very amazing and helpful also.  All family and friends have been great too, as well as the ONS support group on Facebook.  It is so great to have so many people to talk to when I am feeling bad, good, or whatever!  I got a new crazy haircut again, but thankfully my hair is long enough that when I leave it down it covers it up so you can't even tell.  That would not be a major issue anyway for me.  I told a doctor before that I didn't care if my whole head had to be shaved, and I still feel the same way.  My surgeon, my St. Jude Medical rep, and the whole staff that worked with me at Cool Springs Surgery Center were all wonderful.  I don't think it could have gone any smoother. 

Permanent surgery soon!

Wow I cannot believe I have not been back to my blog in over a month.  It has just been very busy and I have not felt well.  When my trial stimulator was removed, the Evil Headache was back at full intensity all at once 1 1/2 hours later.  It was terrible.  It has been terrible ever since.  I have been at about a level 8 for most of the time since. 
We also bought a new house - yay!  Moving has been really hard with the pain though.  I had to take so many breaks and stop what I was doing so many times it was ridiculous.  I have never had problems doing normal things like this until the Evil Headache came along.  Really I need a better name for it because "headache" just does not do it justice.  "Ice pick stabbing through the face exiting the back of the head along with another stuck in the side of the head" seems like a really long name.  I get really irritated whenever someone whines to me "I have a headache".  I want to punch them really!  I am having some anger/irritability issues from dealing with the 24/7 pain, is it obvious?! I cannot even drive without being afraid that one of my "exacerbations" will happen while I am driving.  I drove my youngest daughter to a field trip recently and it happened.  I went up on the curb but thank God that is all that happened.  I have basically been letting my darling husband drive me everywhere since then.  I try to explain it, but no one really seems to understand how bad these pains are that occur with the "exacerbations" (or as I call them "the stabs").  My body just shuts down and I cannot control it.  My eyes automatically shut if I am in bright light and I clutch my head until it starts to subside. 

Anyway, after waiting not so patiently I finally got word that my insurance company agreed to pay for the permanent surgery so I will be heading back to Tennessee again very soon and when I am able I will be back to blog about how everything went.  I have a terrible fear now that after I have the peripheral nerve stimulator implant done the pain will switch over to the other side.  I wonder if that has ever happened to someone with hemicrania continua?  Maybe I should do some research.  Wish me luck!!

Successful trial

Today I can joyfully say that I have had a very successful trial.  I was a little unsure at first because I had procedural pain and that pain was in the same areas as my pain normally is, making it sort of hard to decipher sometimes whether the stimulator was working or not because it was so sore there.  When I woke up on Saturday morning though, it was like the difference between night and day.  I had no headache and decided to try not taking my pain medication.  I was lucky enough to have a thunderstorm come that night also, which is one of my worst triggers.  I just changed the program on the stimulator and was good to go.  Still no pain meds.  I did get an answer to a question that I have been wondering for years now.  I wondered if I had the stim could I still get the bright red cheek that comes with the terrible headaches?  I did in fact get that bright red cheek but all the while I was chatting and laughing and felt much more like the old me.  I did make a stupid mistake though.  I got sleepy and went to bed forgetting to take my pain med (Kadian) that I have been on for almost a year now.  I woke up this morning sweating with chills and very nauseated.  It took me a few minutes to realize I had gone without taking any medication for 36 hours!  While I felt really bad for a couple hours this was still exciting that I FORGOT to take any medicine because my head was not hurting.  I am sort of emotional today.  My oldest daughter and I have not been getting along at all for a few weeks now and she even moved in with her biological father a few days before I went to Tennessee for the trial surgery, and now I am going back to Tennessee to have the stim removed but I don't want to chance infection so I will sadly give it up.  I am just not ready for trading in this wonderfully soothing massaging feeling in my head for the regular old pain pill taking, ice pack holding me.  Hopefully soon I will be headed to the permanent implant and my daughter will realize I am the best mom in the world (well one can only hope right)!

Trial implanted!

I had the leads to my trial stim implanted Monday the 13th and had the battery hooked up and the stim turned on Tuesday afternoon.  It has only been a little over 24 hours so it has not magically taken all my pain away.  I still have quite a bit of incision pain where the surgeon made incisions and then shoved wires through those and tunneled them under the skin - is that why I am hurting ya think?!  I am hoping in a couple of days I will be able to tell more of a difference.  The stimulation does feel nice.  It feels like a light massaging sensation to me.  I would trade that for excruciating pain any day!  I will post some pictures but if you are squeamish beware the bandages do have some blood on them.  I go back next week to have the trial removed and if it was at least 50% successful in relieving my pain we will plan to do the permanent implant surgery in 2-3 weeks.  At least I have a good excuse for lots of trips to Tennessee right?!  The people there are super friendly.  The entire staff at Cool Springs Surgery Center was awesome, not to mention my wonderful surgeon Dr. Rupert and rep from St. Jude, Rod - who was very patient with me and created several programs according to what I asked him for. I have one lead that I cannot use at the moment under my eye.  It hurts to stimulate it and the area is just really sensitive.  I am just going to use the other 3 leads for now and wait to see if that area feels better soon so that I can try that lead again. 

It's almost time to go for trial surgery!

My surgery is getting so close and I am SO excited!!  They will not turn the stimulator on until the day after it is implanted because they said they will numb my head up so much that I will not be able to tell if it is working or not the first day.  Now I am excited about my head being numbed up, yay!  I will try to keep the blog updated but my laptop bit the dust so I will have to try to use the computer in the lobby where we are staying.  If that doesn't work, I will update it after we get home.  We are coming home on day two if I am doing ok so that the hubby can go back to work for a few days.  He is trying to save his days off to help out when I have the permanent surgery if the trial is successful, as I will be needing more help with that surgery since it is a more difficult surgery while the trial is just a simple outpatient procedure.  Wish me luck!

Finally!

Yes, for once my annoying persistence has finally paid off!  I have been informed this morning that my trial surgery has been approved and if successful the insurance company has agreed to pay for the permanent surgery as well.  Woo hoo!  I could not be any more excited.  Now I have to get it scheduled.  I will try to keep everything updated here.  This only happened because 2 very nice people shared their personal information with me that was proof that the same insurance company as mine has paid for the same surgery for them.  After sending this they reviewed the info for about a week and they changed their mind.  It is sad that us patients who are suffering from so much pain have to go through so much to get relief.  Hopefully this is something that will finally help me get more of a normal life back.  I know it probably isn't a magic cure that will make me never have a headache again.  It is considered successful if you have 50% relief or more.  That to me sounds wonderful.  I believe I can handle daily life a lot better with a level 3-4 headache instead of 7-9.  We will just have to wait and see.  Wish me luck!

Little rays of hope

I just realized I have not posted anything since April!  That is because I have not really had anything to post about.  I have had worsened pain over the past few months to the point I have gotten emails from both my jobs because I have been so behind.  It just seems everyone in the world wants me to do something and all I have felt like doing is lying in bed with an ice pack.  I got another denial from insurance and they will not accept any other requests from my surgeon for that surgery.  They say they consider the review and reconsideration process "exhausted", to which my husband states he is exhausted from paying weekly for our insurance.  It is very, very frustrating.  I have been working on my own member appeal to send in and have asked family members to write some personal letters about how "the headache" has affected my life over the past 3 years.  But I also have had 2 things that have been somewhat encouraging to me. 

First, my local pain management doctor has his billing dept/insurance specialist talking with the rep from insurance about doing the trial surgery here locally in his office.  I had no idea they were even doing that!  I did not even know that my pain management doctor did surgeries.  I saw him for the first time on May 31.  Before then I had always seen a PA in the office except when he came in and met me and shook my hand before they put me out for him to do the cervical epidural.  He said he was not going to ask me to do any more injections as they only had such short term relief it really wasn't worth it.  He asked if anyone had ever mentioned a stimulator surgery to me before.  Umm.. yeah.  I have been battling for that surgery for a year now!  I told him how my insurance company had denied to pay for it a few times.  He says they are saying a lot of things are experimental lately and not wanting to pay for a lot of things now.  So I asked him if he could write a letter to the insurance company stating that I need the surgery and he said he would.  At no point did he say he would do the surgery!  I called the office about a month later to ask if he had ever dictated the letter and they transferred me to the billing department.  The lady there ended up being the wife of a supervisor where my husband works and he actually knows very well.  They have actually been to my home before.  My husband has done mechanic work on their vehicles.  She was extremely nice.  She said she had been in touch with the insurance rep and trying to get the surgery covered.  I was completely dumbfounded as I had no clue this had even been going on.  She said she would call me whenever she got it approved so I could schedule a surgery date.  That blew my mind!  Of course I haven't heard from her anymore and it has been a couple weeks now.  I am not losing hope though.

My second encouraging thing is a new chiropractor.  I started taking yoga classes and my teacher recommended I see her chiropractor.  She does not even see a regular doctor anymore, just goes to see him.  He is supposed to be an excellent diagnostician (is that a real word??) and diagnosed a condition she had with her heart.  He gave her some kind of supplement to take for that and she has been fine for 2 years now after being on it!  I thought it was definitely worth a shot.  I had my appointment yesterday afternoon.  This was not really like any other chiropractor's office I had been to in the past.  They always pushed me into coming for several times a week and crack my neck and send me on my way.  But he noticed lots of things no one else has, like one shoulder was higher than the other (I was told that as a child at scoliosis screening at school) and when he did the testing where you resist pushing I could not even stand up.  When he pushed I almost fell over every time.  When I was lying on the exam table he said one leg appeared shorter than the other also, one hip was pushed forward and the other backward.  After a long treatment with all kinds of things that sounded like power tools to me (at one point I was almost sure he was using a buffer on my back) he stood me up again and my legs matched, my shoulders were almost even and my headache had went down very minimally.  So he called his wife in to help him do a treatment he called "biocranial therapy".  This was painful but I think so worth it!  Usually when it rains I am useless and can do nothing but lie down with ice packs and wait it out the pain is so bad.  When I walked out of his office it was cloudy and began to rain on the drive home.  My headache was still low at around a 2!  I came home and went out with my husband to feed all the animals (we have a lot!) then came in and cooked dinner, cleaned up and started working but fell asleep while working.  All this time it was storming with lightning, thunder, etc.  I had a minimal headache, not a piercing, throbbing, make you wish you were dead headache as I usually do.  I slept like a baby.  This is without taking any melatonin, benadryl, etc.  I normally am up late at night because my head hurts so bad I cannot go to sleep.  I am cautiously excited.  It is a really sad thing, but now my husband and I are very cautious to be too optimistic about any treatments because it seems sometimes things help at first then the evil headache wins every time.  It has been trying to reappear in its usual form and I have gotten occasional more painful  jolts but it is still lessened this morning.  I know it may not be a magical cure but if this treatment brings the level of my headaches down like this all the time I can definitely be a lot more productive.  Speaking of productive, I guess I better get back to work!

Having a bad day

Yuck!  Since I got up this morning I have felt bad.  I had a cold earlier in the week but I thought I had gotten over it.  Now I have a sore throat and a swollen lymph node that makes swallowing and turning my head hurt.  My muscles are aching all over also so much that it hurts if I walk.  On top of that I am extremely sleepy.  I fell asleep on the toilet lol! I have been trying to work off and on all day but keep falling asleep at my desk.  All this on top of my head feeling as if a knife is stuck in it makes for a bad day.  Ok I think I am done whining for now!  Hopefully I will be feeling much better by Easter.

Appeal

Well I finally got all the records in from all doctors who have treated me for headaches since 2009.  The appeal was faxed in and a hard copy mailed in as well today.  Wish me luck!

Insurance denial

Well I got the dreaded denial letter in the mail.  :-(.   The insurance company is claiming the procedure is investigational.  Interestingly, they only denied one of the procedure codes and not both.  I called and talked to the insurance specialist handling my case.  She is going to check with the coders and see if something can be changed and re-submit the request or else we will have to do an appeal.  More waiting in pain of course.  I had another cervical epidural yesterday.  Head is still killing me.  When I sat up in the recovery room my head actually hurt worse for a minute.  It decreased back down to its normal constant pain within a few minutes after they gave me some caffeine though. 

Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day

Check out this link from a blog I follow (Advocacy for Patients with Chronic Illness). If you go to this site to "raise your hand" $1 will be donated.

Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day

Nerve blocks

I went to the pain management office yesterday for an occipital nerve block.  They had me down for bilateral occipitals but since my right side does not hurt I did not want it injected.  I asked if he could do a maxillary injection instead and he did.  When I told him my whole left side of my head hurts he said he couldn't block all of the areas in one visit but we had to find a combination that worked well like what we did this time.  I have done tons of research about the branches of the trigeminal nerve and from what I had read the maxillary branch (V2) should cover up into the temple area.  But I have numbness from under my eye to my upper lip and it does not extend all the way to the edge of my face.  Sadly this is not even the area that hurts the most.  When I pointed to the temple area and asked if the block would spread up to that area, he said no but that only hurts because I clench my teeth and I need to get treated for TMJ.  Oh if he only knew the treatments I have gone through for TMJ that were fruitless not to mention drained my savings account because insurance would not cover them.  But of course it hurts to talk and so I try to keep it short.  I told him I have already tried that. 

Also for some reason the occipital did not work like the others I have had.  I still have pain that is shooting up the back side of my head as usual like I never even got the shot.  I wonder if it is possible to miss the right spot and it not work, or is it possible to get sort of immune to them?  Anyway, the shots seem to have ticked off the evil headache.  It was really hard to drag myself out of bed today.  It is REALLY killing me.  Days like this I want to just stay curled up in bed all day, but I can't.  Curse you hemicrania continua!!!

Happy Valentine's Day

My husband is so sweet to me!  He surprised me by bringing me my Valentine's Day gifts while I was in bed with my ice pack this morning before he went to work.  I love Valentine's Day!  It is a great reminder to appreciate the people you love and show them how much they mean to you.  You don't have to spend a ton of money to do that.  I do hate how the holiday has become so commercialized now with everything advertised as a great Valentine's Day gift.  As for me, being pampered is a great distraction from the constant pain and frequent ice pick jabs of hemicrania continua.  It sure would be wonderful if next Valentine's Day I could wake up without a headache at all and maybe pamper my husband a little for a change.  I can always hope.  For now I am going to go smell my beautiful yellow roses again! (Yellow is my favorite color)