Let’s Talk About Me Feeling Better…..Part 1

 

Freedom by w.holcombe
Freedom
by w.holcombe

First, I want to say, I’m not cured of anything.  Nothing is gone completely.  I still have all my Meniere’s, and it’s symptoms.  I’m still deaf, with cochlear implants.  I still have Migraines.  I still have Cluster Headaches.  I’m still Bipolar. I still have Fructose Malabsorption.  I still have all of my chronic illnesses.  I am still disabled  I just don’t have some of the symptoms as severe as I did 3 months ago.  Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you.  I haven’t revealed everything before for a couple of reasons.  One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first.  This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten?  The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working?  I went for about 3 months of non-stop migraines.  It was horrible!!  I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess?  Then I started getting cluster headaches.  Remember?  If you are a new reader you won’t remember that, but it happened…and then…

by w. holcombe
by w. holcombe

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm.  I woke up and my first thought was “OH NO! I haven’t taken my Diamox!”   Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ).  Without this medication I normally have an excruciating headache!  However, I suddenly realized, I didn’t have a headache.  For the first time in months, I didn’t have a headache.  Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head.  This day I did not have a headache.

I decided not to take it and see what happened.  No headache.  The next day.  No headache.  Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous.  I should have called my doctor when I decided to stop taking the medication.  This could have been a medication that I needed to be go off slowly.  I could have harmed myself.  If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it.  Do this under your doctor’s supervision.  I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her.  Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case.  The drug I was on is not one to play around with.  We aren’t exactly sure what happened.  It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better.  As I said earlier, normally if I didn’t take it I would have had a very bad headache.  We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident.  The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop.  I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again.  That’s why I was put on the medication, to try to stop that cycle.  This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery.  So now I don’t have to be on the medication.  Crazy, but that’s all we can think of???  Or maybe my body just regulated its self?  It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better.  Again, I still have headaches, both migraines and clusters.  The migraines are just much better than they were.  I can’t say that about the clusters because they didn’t start until right before this happened.  I don’t have a lot of these so far.  I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know.  The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks.  I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while.  I have been working hard to control those attacks.  That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first.   So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not.  Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication.  I sincerely hope this is not the case.  The medication that is used for this, is not a friendly drug.  I hated it.  Side effects…ugh.  Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”.  Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet.   (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself!  (This will be Part 3 of the Feeling Better Series)

 

 

 

 

 

 

Gratitudes in the middle of a mess

It’s time to take a little time to notice some of the things I’m grateful for…before I completely meltdown (again)…I know this will help!

This move has been extremely challenging, mentally and physically.  I am very grateful that I (and I am serious here) am not curled up in a corner crying and trying to hide from the world.  I’m also grateful that I am still able to get out of bed and accomplish some things.  Yes, I am in a lot of pain but, I’m still doing much more than I have in years.  I am so VERY GRATEFUL for this.  I told Stuart last night, I just can’t believe I started feeling better (no not well, but a bit better) right before all of this happened.  Wow!  If I was still like I was just a few months ago now.  This move would have been…..uh, well I just don’t want to think about it.

I’m grateful I sold almost all of my fused glass supplies.  I have only 2 things left and they should be very easy to sell!  Because of this we didn’t have to move any of that!  Yay!!!  Also, because of this I was able to buy our living room furniture.  This made me feel so good.  I was able to contribute to the household.  This is the first time I have been able to do this in YEARS!  (We had to by new living room furniture because the furniture from out old place was too big.)  This is a loan to the house though, as soon as we can pay it back that money goes in my service dog fund.)

I’m very grateful that I met the nicest lady when I sold my fused glass supplies and she actually sold my kiln for me!  How cool is that?

I’m grateful that our new place has a beautiful backyard.

I’m grateful that we live within walking distance to a grocery store and other little shops.  I hope it really is within MY walking distance.  If not now, soon.

I’m grateful there is a park nearby.

I’m grateful Stuart works very close.

I’m grateful we found a restaurant that will make meals that meet my food requirements, and it isn’t far away.  Plus, the very first time we went we got the best waitress, she is the bomb!  We’ve been there one more time and asked for her, she remembered what I needed and helped me order!  Wow!

I’m very grateful I’m still losing weight.  It feels so good to be getting in to smaller clothes and seeing a smaller face in the mirror.  I’m grateful that the diet is making me feel so much better!  What you eat really can make such a HUGE difference in how you feel!

I’m grateful I have the coolest cousin in the world living close by!  Can’t wait to see him and his brood this week!  And it’s so nice we can call on each other!  He’s real family!  If your reading this, I love you man!!!

I’m grateful things are coming together……wait, did I just say that?  do I believe it?  Am I just saying it or do I believe it?  hmmm, let me think.  (Jeopardy them playing in my head…)   I’m not sure.   One thing will happen and it looks like things are flowing along then one thing will happen and things just start going backward…but I know things will end up…the way it’s supposed to be, after all how else could it be?

And yes, I do mean that.

quotes-1523
mediawebapps.com

I’m grateful I wrote this post, because I needed it.  I needed to remind myself that things are going happen.  They are going to be the way they are, no matter what.  I keep trying to bend things the way I want them, I keep fighting to make things happen faster than they are going to, and well, I needed to remind myself…..it’s going to happen, or it’s not, and that’s OK.

Yesterday is gone, I can’t worry about what happened, tomorrow isn’t here yet can’t do anything about it.  So today I’ll do what I can, and that’s it, if something comes up and makes it so things get in the way I’m going to go with the flow and not get all out of sorts.   Just breathe.   It will get done, or it won’t, maybe it wasn’t meant to be.  I’m so very grateful I realize that.

Today’s meltdown averted…..maybe I should have written this yesterday.

 

Moving Day…kinda sorta

moving-day
We left all of this stuff behind!!                                                     found this cute clip on wanderingbohemian.blogspot.com

I wish I had been writing short little post all along, because now I really have no idea where to begin.

This has been so very, very, very hard.  Yet in many ways it has been so very liberating.  Liberating because I feel I am being unburdened by so many things that I do not need.  How did I get so much stuff?  When I met my husband I lived in a studio apartment.  Where did it all come from?  And truthfully, for just me, I had too much stuff then!  Getting rid of all of this clutter is freeing.  I keep thinking, for the past few years I have lived without even thinking about this stuff why do I need to have it around me now?  There are some sentimental things I’m having a hard time parting with, and I’m holding on to some of those.  I think I’ll have a second ‘cleansing’ later.

Then there have been so many other very hard parts.

Physically.  Physically, I just couldn’t do as much as I wanted.  As much as I felt I needed to do.  I got so sick.  All the dust and stress, and just everything caused me to have major symptoms.  My breathing.  I had the hardest time breathing on many days.  Twice while I was sorting through things I realized I was confused, once I was giddy, I got up and couldn’t walk straight.  I got out of the room and each time Stuart saw me and helped me to the couch.  Then I started coughing.  I’d cough up a lot of mucus and need my inhaler and a nebulizer treatment.  I was not getting enough oxygen.  I wasn’t wheezing yet, so I didn’t even realize it, but my lungs were filling up with mucus.   This whole situation, has really opened my eyes as to just how little I understand about my lung issues.  I’ve had to cancel many appointments with my lung doctor because of vertigo, and now my doctor is finishing her residency with Duke so I would be seeing a new doctor, so I’m going to start looking for a new doctor in Charlotte as soon as hubby’s new insurance kicks in.  I’ll post more on that when I see the new doctor, I don’t want to say more about it until I get more information.  For now I’ll say, I’m keeping a closer eye on how I’m feeling, how I’m breathing, and how it’s all going together.

The breathing difficulties made it very hard for me to help as much as I felt I needed to.  Yes, I do mean needed to, because no one else could say if my stuff was to go to the new place or not.  And we did not have the luxury of just packing it all and deciding what to keep later.  We are moving from a 2300 sq ft home to a 700 sq ft home.  Things had to be trimmed!  So I tried wearing a mask, it worked somewhat, but it made me less air flow, this made me feel like I couldn’t breathe….maybe I’m a bit claustrophobic?  Maybe a little, but I wear that mask out all the time with no problem, but I’m not exerting myself.  I guess that’s what was making it difficult, or perhaps I was just already so irritated.

Then the headaches were getting bad.  Maybe because of the breathing issues, maybe because of the stress, maybe because of all of the above….or the weather, or ……my head was / is hurting.

I was having more vertigo.

The last 5 days at the house I spent most of 4 of them in bed.  Talk about GUILT!   However, I got a lot done from the bed.  Stuart would bring me things to go through in bed.  Not sure that really helped me much physically, but mentally it helped.

I have not been doing well with my Mindfulness Based Stress Reduction studies.  I think if I had been doing them longer I would have been able to deal with this better, but nope, I didn’t deal well.  Kind of went right out of my brain.  I’d try every now and then….and then I’d just look around at my completely torn up house and think….how on earth are we going to do this?  and FREAK OUT!

Well, things got done, as much as they could.

Movers came today…..Oh that’s a story.   The relocation movers.  Couldn’t come until today, the 17th.  Are giving us a FOUR DAY WINDOW to deliver.  That means delivery could happen on the 21st!  That’s the day Stuart was supposed to start work!  Ummm…..this is the relocation company that Stuart’s company uses.  So, luckily his boss is very understanding and he is going to start work on the 28th.  Phew!

Can I just say, moving under the best of circumstances is not easy.

Downsizing like we are makes it more difficult…..even if you want to do it.

Having very little to no help makes it extremely difficult!

Having a chronic illness on top of all of that can make it pure hell.

My saving grace, as always, having a spouse who is willing to go that extra mile to make it as comfortable for me as possible.

That’s why, today is moving day….and I’m sitting in a hotel room with Max the many toed cat.   We didn’t need a freaked out cat there while the movers were doing their thing, and I didn’t need to be there with more breathing irritants and getting more stressed.   (ahhh…deeeeeep breath!!!!)

I’ve been a bit scared that this whole thing is going to make me go back a bit….meaning, I’m going to end up back having daily migraines, tinnitus, pain, vertigo…  Not being able to do much at all.  I have been doing so much better.  suddenly, I have been really scared…..

Then I thought.  That’s tomorrow.  I have no control over tomorrow.  My worry isn’t going to change it.   I can only continue to do what I know to do, and if I feel good, great, if I don’t, I’ll reevaluate.  I’ll just live in the moment.  That’s all I have.  And right now, this moment is pretty good.

Hubby should be here soon.  Max is dreaming kitty dreams.  I see kudzu taking over the fence outside my window.  It’s a normal day in “The South”.

 

“Us” vs “them”: the under-served patient speaks up

I know I haven’t been around lately….I will return soon…I think this is VERY important, someone thought it important enough to share it with me, I want to share it with all of you….hopefully, you can share it…and the world will realize it shouldn’t be “Us” vs “Them”! Let’s talk about until everyone listens!

Carolyn Thomas's avatarHeart Sisters

by Carolyn Thomas  @HeartSisters

I asked permission to republish this letter written by an American friend who’s living with both multiple health issues and poverty.  She has asked to remain anonymous. I’m grateful for her contribution to an important discussion, as she offers a unique patient perspectivein this letter to the organizers of a well-known academic conference on healthcare.

“Dear conference organizers:

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months.  The best way I can explain my concern is through this example:  

View original post 2,179 more words

Job, moving, packing, and spilled spoons

 

spoons by w. holcombe
spoons by w. holcombe

This will be a very quick post….I just don’t have time!  And I’m spilling spoons all over the place……..

I realized how long it has been since I have posted or read anyone’s blog posts and thought….my people will think I have died!  Or they will think I have run away and am dancing with the natives on a semi-deserted island!

I’m happy and sorry to disappoint, but both are wrong.

Many things have happened….and I will not be able to tell you them all here.

Here are the highlights:

  1. Stuart was offered a job in Charlotte, NC….about 3 hours from where we live now.  This is a great job.  We are so grateful!
  2. We had to go look for a place to live in Charlotte, NC.
  3. We spent 4 exhausting days looking for suitable place to live in Charlotte, NC   (a suitable place, must be 1 story….I can no longer do stairs. Walker should fit in bathroom. Preferably 2 bedrooms. A very narrow price range due to the fact that we will still be paying a mortgage until we sell our house ….plus double utilities, ect.,)
  4. We returned home, not knowing if we had found a place to live, even though we changed some of our must list. (walker did not have to fit in bathroom, could have 1 or 2 steps to enter. Would accept 1 bedroom.)
  5. After being home for 2 days we found out we had the duplex we really did like!  It did not meet all of our preferred requirements, but we can live with it.  My walker will not fit in the bathroom…but I’m used to that.  It does fit in every other room.  There are 2 bedrooms!  There are 2 steps to enter the home, but the landlord is going to put in a railing.  I can deal with that too!  It’s in a great place, and it ‘s just what we need.  Yay!  (dancing a little jig!)
  6. Our new place is about 1/4 the size of our house.   Yes, we meant to get a place that was much smaller than the place we live now.  We want to downsize and minimize.  It will make things much easier on both of us.  However, the next couple of weeks things will not be easier!
  7. Stuart starts work on July 20th.  We want to move in about a week or so before then.  However, that means we want to have the things we want to keep in the new place.  That doesn’t mean we will have all the things we no longer want out of our old place.  We plan to have that taken care of by the end of the month and put the house on the market next month.  Whew!

So……I’ve used up all of my spoons every day.

some days I haven’t had any spoons when I wake up in the morning.  One day I had no spoons to even make it out of bed.

Today I got up and started to do a go through things and suddenly I picked up something that was my mother’s and spilled all my spoons all over the floor!   I had been surrounded  by dusty things and my asthma was starting to tickle…I had planned to go get my inhaler, then I picked up my mother’s things….and CRASH spoons everywhere!!!……suddenly I couldn’t  breathe!    eehheheheheeeeeswwwhwhwhwhwwwwwwwwwhwhwhwweeezzz   Stuart was upstairs, I’m crying and can’t take a breath….eehehewwwhwhwheeehwwheeeezzzzz   I picked up something and threw it trying to make a noise….luckily he was coming down stairs and saw me and grabbed my inhaler….I got was able to get a breath and then I had a nebulizer treatment.  I could breathe again….but Stuart had this huge guilt trip….”What if I wasn’t here?  What is going to happen when I go to work?”

Then I had a guilt trip….but…”Ummmm. when you aren’t here I have my emergency kit next to me.  This was my fault I should have had my inhaler with me.”   and I’m thinking….please stop I feel bad enough……

But he is getting all worked up, it’s been so long since he worked out of the house…..then I started feeling more guilty…..and suddenly i feel like a little kid being scolded for not taking care of myself.

yep….Spoons all over the place!!!  some I’m sure are coming from tomorrow”s reserve.

(no worries, you know we got it all straight, emotions calmed down and communication started working…….we work well together….but we are both out of spoons today!)

if anyone is reading this and doesn’t understand my reference to spoons please refer to this link:  The Spoon Theory

Weekend = 1 good day + 1 bad day

Fireflies 1.0
Fireflies – Photo by Dortothy Handleman visit her website at: http://dorothyhandelman.com/

This was my post on Facebook about Saturday:

“Yesterday I felt like I did more than I have in the past year!

I cleaned out my dresser, and my closet!

I had dinner at the table.

I sat outside and watched fireflies with my husband….arguing over who loved who the most.    

*note…I am careful. I realize I’m still disabled. I did have my walker with me in the closet, I did not bend over to pick things up off the floor, I sat down and worked on the lower areas…ect. I took breaks. I’m living in this moment, and doing what I want to do….as much as I can.”

Saturday was a really good day.  I was amazed with myself.  I got very tired at one point and thought, “Why am I so tired, I’m just looking at things hanging in a closet!”  I had a muscle spasm in my back.  I was frustrated, and went and laid down on the bed.  “UGH!”  I said aloud.  Stuart came in and asked what was wrong, I told him….he massaged my back…and as he did I thought.  Why am I upset?  I couldn’t even think about doing this less than 2 weeks ago. Now I’m upset because I’m getting a little tired?  How silly.  Besides….remember…live in the moment…what ever this moment gives you.  It takes a long time to get this through my head, but I’m determined.  Living in the moment is helping me so much.

After Stuart massaged a little, I felt better, he went back to working, and I rested a little more, thinking, this is a good moment,  then I went back to the closet.  I shocked Stuart and myself, I finished going through the closet!

It felt good.

The rest of the day was good.   Dinner at the table.  Watching fireflies on the back porch with my hubby.  Stuart is from the desert, he didn’t grow up with fireflies, they amaze him.  Every year when they start to come out I love to see his wonder watching the flicker of the little lights going through the yard.  He loves the sounds of the insects, and smells of the forest.  I love it all….but the mosquitoes love me!  They never bother him.  So sad, it always spoils the mood.

But we laughed and had a good night, playfully arguing over who loved who the most.  (he never plays that game, it was funny)

 

Sunday started off very good too.  I was sore from the day before.  I slept a little late.  I went downstairs and had breakfast. Started the day, and had the feelings of a headache starting….oh, it was starting in my eye.  Oh no…that’s where the cluster headaches start, I was so hoping that wasn’t going to happen, then it moved…it shot through the right side of my head – a migraine!  I took a Maxalt very quickly and the migraine didn’t last long….yay!  the medicine worked.  However, I got very dopey.  Odd, that doesn’t usually happen.   I was very sleepy.  I had a little lunch.   As the hours progressed, I continued to feel groggy.  Finally, I decided to take a nap.  I woke after dinner time.  I ate something and watched a little TV, and went back to sleep.  I was not feeling well.

Various fruit smoothies isolated on white backgroundI woke up a lot in the night with my stomach hurting so much.  I was very nauseous and had a lot of acid indigestion.  I took medicine for it, but it would not go away. I was awake most of the night.  When Stuart woke up, I had him make me a Smoothie to help my tummy (it’s part of the elimination diet, you have one almost every morning), I thought it would help.  It did make it better, but it still hurt.  I took more medication and finally fell asleep.

This weekend I had 1 new thing I haven’t eaten before on this diet.  Also, I ate more of something than I might should have.  With Fructose Malabsorbtion, you not only have to watch what you eat but how much of it.   So, I know have to figure out which of these caused these horrible symptoms.  (I had grapes for the first time, and I had a lot of cabbage….hmmm, I’m thinking the grapes because I ate them on Saturday and again close to bedtime on Sunday.  Right now I’m not eager to try either again any time soon!)

Today is the first day I have not made it out of bed in 2 weeks.  I have simply felt icky.  Tonight I did get a bath, and I do feel much better, but just having one little thing to eat that my body doesn’t react well to, really set me back.

I was surprised at all the symptoms that could have been caused by eating something I reacted to:

  • migraine
  • feeling foggy/fatigued
  • nausea
  • heartburn/acid indigestion
  • stomach pain!
  • hot and dizzy
  • overall achiness
  • gas/bloating  (foul smelling)
  • many trips to the bathroom
  • pain in bladder and urinary track

Some of these may have just been because I did so much on Saturday, but I think most of it was caused from my reaction to the food I ate.

The last symptom may seem very obscure, but I have been plagued with very intense pain in my bladder and urinary track for a very long time.  I’ve been on medication for it for years.  I have been told I have Interstitial cystitis.  Since I have started on this diet I have not had these symptoms.  I have stopped taking the medication.  The first sign of the symptoms again happened Sunday night….and they are gone now.   I am not suggesting that I may not have this condition, I am suggesting that it may be irritated by certain foods (I have read that some studies suggest that in some patients it has been found that some foods were triggers for symptoms).  I have been in pain with this for so long, and to have the pain simply disappear, almost overnight, is mind-boggling to me.   *note, I have needed to go to the urologist to see more about this condition but have put it off because of my complications with Meniere’s and Migraines.  I have put off many things because of these illnesses, as many of you know, they have taken up most of my time for the past few years.

I have a week full of activities planned, so I hope I feel much better tomorrow.  I do feel much better tonight.

Coming soon, I will have a new look.  Now that I have been feeling like I can get out.  I’m getting my hair cut!  And I really need new glasses….so, I’m changing that too!    Wonder what I’ll look like????

Gratitudes 3 – A Pretty Darn Good Week!

by w. holcombe
by w. holcombe

Things haven’t been perfect this week.  I did have a night filled with cluster headaches.  But I got through it, and since then I’ve been feeling, well, pretty darn good.  Until I got this little virus, but I already wrote about that, and I’m grateful that it will run it’s course and I’ll be done with it!  Plus I’m very Grateful that it really hasn’t been that bad, a couple of icky days, but that’s about it.

I am so very GRATEFUL that I found something that is helping me with my tummy issues!  I found a book that addresses the food issues that I have, but I plan to write a whole post about this, it’s so exciting! And I think it could help others with dietary issues.

I am GRATEFUL:

  • that I have a new psychiatrist!  She is so professional.  I’ve only seen her once, but she took a very detailed patient history, discussed all my medications in detail, discussed my concerns, and our future plans.  I was very impressed.  After the last fiasco with my previous doctor, it is such a relief to find a doctor who is not only professional but enjoys her job.
  • that I have been on more regular sleep schedule.  This is something I haven’t had for a very long time.
  • I am waking up with more energy.  Of course, this is probably because I am on a more regular sleep schedule, but it sure is nice.
  • I’ve been able to go down stairs every day this week. Most people probably don’t know just how disabled I have been, but tackling the stairs have been a huge task for a long time.  Most weeks I’ve been lucky if I’ve made it downstairs one or two days.  So making it down stairs every day for a week, that is a great accomplishment!
  • I have gotten out of the house many times this week!  Not only have I made it downstairs every day, but many days I’ve gone out.  I went to the grocery store….a HUGE accomplishment!  I went for a ride with the top off of the car!  I went to the Thrift store and got a new pair of pants.  I went and looked at glasses.  (I have an eye doctor’s appointment tomorrow, and will need new glasses.)  I even went out to eat, this is hard because of all the noise.  I’m also proud I went out to eat and stayed true to my diet, I didn’t eat anything that would make my tummy unhappy.
  • yoga pose 1yoga pose 2I exercised a little this week….a very, very little…but I did something!  Not only did I do a lot more in general, and you can call that a lot more exercise…I know my body is!  I did a few yoga poses almost every morning.  Just a few.  I’m trying to learn to balance more with my eyes instead of relying on my ears so much.  So I’m doing some of the standing yoga poses while focusing on a focal point.  Maybe it will help.   By going out an doing more I’m also working on increasing my stamina.
  • I didn’t let a virus ruin my week.  I was having a really great week, then I caught a virus and suddenly I felt crappy.  I thought, am I going to start feeling really bad again?  Then I caught myself….Stop thinking like that.  I can’t predict the future.  And what has been happening has been great, but it doesn’t mean it will continue.  I  will live in this moment.  and I’ll enjoy it.  If it’s a bad moment, I know it’s a moment.  It’s my moment.  And it’s OK.  (A note to Laurie at HibernationNow….Yes, I did over do it…You were right!  so I’m very tired today…but it was worth it, yesterday I had a a very fun day!)
  • I realized that even having a virus I still don’t feel as bad as I have felt.  No I don’t want to live in the past, but it was a bit of an eye opener when I realized I was lying here sick and I didn’t feel as bad as I have for a lot of the time this past year….heck the past couple of years.
  • My head hasn’t hurt much at all!  As I mentioned above, I had a night of cluster headaches, but since then….my head has been so good to me.  There’s a couple of reasons I think this may be, but I’m just grateful that it has happened!  I’m sure I’ll have headaches in the future, but to have the relief I feel now….so GRATEFUL.
  • I made my lunch today all by myself.  I cut up my own chicken today, and warmed up my own lunch.  Because of my balance issues and sudden vertigo I haven’t trusted myself to use a knife in a long time, at least without supervision.  Today I made my lunch with Stuart upstairs.
  • To hear my husband say, “It’s so nice to be able to do things with you.”   Remembering to be in this moment…..

When the Chronically Ill get Sick

feeling sick, by w. holcombe
feeling sick, by w. holcombe

At the end of a GREAT week I’m sick.

Ugh, I have a virus.  Hubby’s had it all week.  He’s been very tired all week, running to the bathroom often, and just not feeling well.  It hasn’t been enough to stop him from doing what he’s needed to do, but I think he would have rather napped a lot.

Last night, it started to hit me.  I thought I’d just had a banana that wasn’t ripe enough.  Umm, Let me explain, I have fructose malabsorption, bananas that aren’t ripe have more fructose than those that are ripe.  By ripe, I mean with a LOT of spots, most Americans do not eat bananas that are really ripe.  So I need to eat really ripe bananas, the banana I ate last night only had a couple of spots, when I had the first bite I thought, ummm, not quite ripe enough, but I ate it any way.  My tummy bloated, more than it normally would just from a little banana, and it stayed bloated all night.  In a couple of hours I started getting really hot, REALLY HOT.  I got up and ran cold water over my hands and splashed it on my face. Suddenly I felt like I was going to pass out, Stuart had to help me back to bed.  I quickly went to sleep.

This morning I woke to the feeling of having to go to the bathroom.  Not a normal thing, but didn’t think much of it.  I was happy I didn’t have a headache…again!  That’s 4 days in a row now!!  However, I noticed that I was still bloated.  Not a good thing….wasn’t happy about that, but didn’t think much of it.  Was just sad  because I’ve been on an elimination diet and I’ve lost 3 1/2 inches from my tummy in the past 5 days, but I thought, this was just temporary.  Perhaps I was reacting more to the banana because I had been avoiding all foods that I had been reacting to?  I got dressed, even did a tiny bit of exercise…..just a few yoga poses, I’m trying to work on my balance a little since I’ve been feeling better.  But I got a little light-headed, and laid down for a bit.  Got my head together and went downstairs.  Had my morning smoothie and played with the cat.

Suddenly I had to RUN to the bathroom.  My stomach HURTS.  I feel weak, tired, and overall just yucky.  Now I have a headache too.  I won’t be able to do things.  I will be on the couch for the day.  Hubby didn’t feel good for about a week, I hope I don’t feel like this for a week.

So Hubby’s little virus is hitting me hard.

I have found that this is often what happens when someone who is already chronically ill gets a little virus.  We don’t have the little symptoms of a normally well person, our symptoms are much more profound.  At least I’ve found that to be my personal case, and I’ve heard it from others….how about you?  Do you find that a little virus, even a “little” cold hits you harder than the average person?

Now I think I’ll take a nap.

GRATITUDES – 2

photo to share 2This week is not a full as last week, but I still have many GRATITUDES.

After weeks of waking up every night a 4am with a very severe pain in my head and neck last night I slept with a soft cervical collar on, it helped.  I still woke up in pain, but I got a lot more sleep, and when I woke up the pain was much less severe.  However, I did snore all night, and the collar does take some getting use to.  But I am so VERY GRATEFUL for a soft cervical collar, and more sleep!

Me with cervical collar
Me with cervical collar

I’m grateful that I was able to make it out to TWO appointments this week two days in a row!  First to the Pain Clinic and next to the Neuro-Opthomologist.  That is a big accomplishment.  I didn’t really think about it, I just knew I had to do it, but Stuart pointed out how proud he was of me.  I don’t think of it as being proud of me, I get upset when I can’t do it, but I need to realize, this is wonderful!  When we started to leave for the neuro-opthomologist appointment I felt like I was starting to have vertigo, but I couldn’t cancel this appointment, it took me over 3 months to get in to see this doctor!  I was scared, but I took some medication, turned the air conditioner on me full blast, and made a go for it.  It was a grueling day, filled with hours of tests.  I’m grateful that everything turned out fine.  No problems with my eyesight, except that I need new glasses!  

I’m grateful that the bunnies have grown up enough to leave the nest.  We are officially empty nesters!  Stuart was a little sad.  The first night he was very worried, he kept saying, “I hope they are alright.”  Such a sweet foster bunny dad.

bunny

I’m grateful for my friends.  I’ve lost many along the way over the past few years, things happen, life moves on.  The friends who are still active in my life are the kind you have for a life time.  My new friends are so precious, I hope you know how much you mean to me.  My dear friends, I am so very grateful for each and every one of you.

I’m grateful for books.  For the library, for my Kindle, for any way that I can get free books that I actually want to read!  Recently I’ve been reading a lot more about my gut issues.  I’m grateful that I think I found a book that is going to help me with my restrictive diet dealing with my fructose malabsorption.  I’m reading about ways to handle chronic pain using Mindfulness Based Stress Reduction, I think this could also help me during a vertigo attack.  I already use some of these techniques, and it does help quite a bit.  I’m reading a lot about Buddhism, all about the different types and how they are different from one another.  I’m reading about minimalism, trying to reduce things in my life.  I’m reading about art and photography.  I’m reading a mystery, some science fiction…..  I read to relax, and I read to learn.   I just love to read.

I’m grateful for this silly goat someone shared with me today that made me laugh and laugh….Stuart laughed at me blabbing with this goat.  Blab, Blabb, Blablbelble….   I think he really laughed because I couldn’t hear myself and I was just going on and on blable, bable….hahaha

Derpy Goat

So my friends these are some of the things I’m grateful for this week.

Share with me, what are some of the things you are grateful for????

My Head Hurts

Headache  by Sinornis
Headache by Sinornis

I haven’t talked much about my headaches in a long time.  I wrote a post about 10 weeks ago about my last Botox treatment for my migraines.  I was thrilled at how well this treatment had been working.  I SPOKE TOO SOON.

After the treatment I started having migraines that did not stop.  I had a month-long migraine.  After calling my doctor I was prescribed a short course of high dose steroids, this helped the migraines, but ended in a horrendous Vertigo attack, that caused me to be put on a month-long course of low dose steroids.  Through out the month I was still having headaches.  The break in headaches during the short course of high dose steroids didn’t last long.

I have been having not only migraines, but a lot of different kinds of head pain.  The one headache my doctor agrees I’m not having is Rebound Headaches. also know as Medication Overuse Headaches.  There are certain medications that you take on a regular basis that cause you to have rebound headaches, I do not take most of these medications, and the ones I do take I do not take on a regular basis.  I am extremely cautious about this.  I am very afraid of getting rebound headaches.

For weeks, months now, I have been having severe pain.   It wakes me up at night, screaming, often yelling NO, NO, NO….with tears running down my face.  I’ve been studying Mindfulness Based Stress Reduction to help with chronic pain and this has helped, but I can’t control the pain when I’m asleep.  I dream about being in pain.  I’m nauseous.   I wake up so exhausted and I have no idea how to stop this pain.   There have been two different types of headaches I’ve been getting that are different from the migraines.  One is a sharp pain that feels like a poker stabbing me in the eye, my eye waters and I can’t open it all the way.  It’s only on one side. It is the most intense pain I’ve ever felt.  I have a much greater appreciation for the song Maxwell’s Silver Hammer by the Beetles, however I wish he would make sure I was dead at the time. (this is only the pain talking)  I can only rock back and forth and pull my hair, I scream….it came at the same time each day for 5 days, it would last for about an hour or so, stop then return in about an hour…this would have for 4-5 times each day.  Then they stopped, for 5 days, and started again, for 3 more days.  To date, they haven’t come back so far…..Yesterday I was seen at Duke’s Pain Clinic, I saw my Neurologist’s (who is a Headache and Facial Pain Specialist) Nurse Practitioner, since this was an emergency appointment.  I now have a new diagnosis.  CLUSTER HEADACHES.

Cluster Headaches (have been called suicide headaches) occur in cyclical patterns or clusters, which gives the condition its name. Cluster headache is one of the most painful types of headache. Here’s a link to find out more about them at the Mayo Clinic site. Cluster Headaches via Mayo Clinic   There are many other good resources on the internet too.    Cluster headaches can go away for weeks, months, even years.  They often return with seasons.  I hope mine never return.  If they do, I know they will end, and that will get me through it.

I’m also experiencing a lot of pain in my neck, this pain also comes on while I’m sleeping.  It rarely happens when I’m awake.  It does cause some of my muscles to tighten, but the main pain does not feel muscular.  I must have a CT scan to try to find out more information.  This pain started after the Walmart expedition.  When I was in the car I was not in a very good position, my head and neck were at an odd angle.  I don’t know, but I think this may have attributed to this pain.

So every night at 4 am I wake up in pain.  EVERY NIGHT.  I try to help it, change position, meditate, massage, anything…. and it will feel better, I will go back to sleep, and about 15 – 20 minutes later I’m awake again…..OH it hurts!  and we start again….it goes like this until I give up.  I try so hard not to wake Stuart.  No need for both of us to lose sleep.  I’m exhausted.  Sleep deprived. Some days I can nap a little.  Sometimes during these naps I will wake up screaming.  It is terrifying to wake up screaming and crying.  I know my husband is so frightened for me.  I hope the CT scan will give us some answers.  I also hope it is something that can be easily fixed.

Why suddenly am I having headaches that wake me up with so much pain?  Why am I having headaches that are so different from headaches I’ve had before?  We don’t know.   There is no known reason why Cluster Headaches start, some studies suggest certain things, but there are no conclusive answers.  My other headaches?  We are working on finding that out.   My CT scan is schedule for June 16th, and my return visit to the Pain Clinic is on the 19th.  Hopefully, I’ll have some news then.  How I’m going to sleep until then, that is a mystery……but one I’m sure I will unravel.

Bang! Bang! Maxwell’s silver hammer
Came down upon her head
Bang! Bang! Maxwell’s silver hammer
Made sure that she was dead