Picnic with Ants

My life disABLED with Chrnoic Ilnnesses, it just IS. Taking one moment at a time.


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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”.

 


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

wendy:

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!

Originally posted on Heart 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 2,179 more words


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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


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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????


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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…..


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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.


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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????

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