Category: Chronic Illness

Am I getting worse?

On By WendyIn Chronic Illness15 Comments

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For the past year  I have been much less symptomatic than I have in years (not counting my trials with my medication side effects).  I was certain that I was prepared if this came to an end.  I’m not.  Right now, I’m scared.  I don’t want to end up like I was a couple of years ago, or what I was like from 2008 – 2016.  I’m trying hard to be okay with my life no matter what.  I got to the point that I was okay when I was sicker, but it’s so much easier when I’m not.

Before you think that all of this is because of the stress of us possibly moving to Tucson and worrying about our family, my increased symptoms started before my mother-in-law’s accident; I’m not saying stress doesn’t make my symptoms worse, but it didn’t cause it.  Although, it may be contributing now.

About 3 or 4 months ago I started having some new gastrointestinal symptoms.  I’m having excessive and extreme belching, the feeling that there is something stuck in my chest, and alternating constipation and diarrhea. Oh, and we can’t forget the excessive smelly flatulence, I really wish we could forget that, and I’m very sure Stuart wishes he wasn’t subjected to it.  I’ve been put on acid reflux medication, something I was finally able to get off of early last year.  I tried 3 different kinds of reflux medication and I’m still having symptoms, they are reduced, but they aren’t gone by a long shot.  I had an endoscopy on Tuesday, and it showed…..nothing.  A little redness, but that’s it.  She did take some biopsies but it’s not expected to show anything.  I’m kinda hoping it does.  Nothing serious, but something that can be treated and I can get off this medicine, that isn’t taking care of things anyway.  A few years ago, I was very sick with gastrointestinal issues and after over a year of testing it was found that I have fructose malabsorption.  (I already knew that I was allergic to wheat and I won’t even get into my experience with gluten)  All I could think yesterday when I heard they found nothing, was oh no, another year of testing, and possibly finding nothing.  Since I’m not throwing up, losing weight unexpectedly, or passing blood; this really isn’t a high priority to doctors.  I’m already on a low FODMAP diet and I don’t really want to make another major change to my diet, but I’m guessing that may be what’s going to happen.  Damnit!

With the crazy weather we’ve had this winter my migraines have gone out of control!  They were a bit better, but recently I’m having migraines every day.  It’s driving me crazy.  The pain goes from a 5 to a 9, sometimes all in the same day.  I’m only supposed to take medication 10 days a month, as of the 12th I’d already taken medication 8 days this month.  Crap, crap, crap!  They say to take migraine meds at the first sign of a migraine, if I did that, I’d be out of meds in 10 days, instead I wait until it either gets to a 7, or it’s been non-stop for a few days.  That really sucks.  I will be taking meds a few more days this month.  I’m going to start a DHE regimen to see if I can break this cycle.  That’s means getting a shot 3 times a day for 3 days.  My butt is going to be so sore, and these shots hurt, but hopefully I’ll feel better next week.  DHE is not a preventative, but it does a good job at stopping a migraine, and it often works on cluster headaches too.  Doing the 3 day regimen is to break the cycle, not to prevent new attacks.

I do start Botox next month.  I tried it a few years ago and it helped for a while, but it stopped working.  We are hoping I have a better response to it now.  My doctor is willing to prescribe the new GammaCore, but insurance won’t cover it and it’s really, really expensive!  Hopefully they’ll cover it in the future.  It’s shown to help with both cluster headaches and acute migraines.  It doesn’t prevent migraines, but it can stop them, and since it’s not a medication I wouldn’t be limited to the 10 – 15 uses a month.  There is also 2 new medications coming out later this year for migraine prevention.  I hope insurance companies will cover them as soon as they come out, a new migraine prevention medication is desperately needed.

I’ve also been much more dizzy.  My balance is worse recently, and the world often spins when I move my head too fast.  Last night I kept having vertigo every time I looked up.  Just moving my eyes to look up made me spin.  That was new, and I hope it never happens again.  I think this increased vertigo is migraine related, but I can’t be sure.

Today I had a confrontation with someone and I didn’t handle it as well as I’d have liked.  It left me shaky and full of anxiety.  When I tried to explain it all to Stuart I got so upset I started to seize.  I haven’t had a seizure in a very long time, luckily this was very minor, but it scared me.  I am happy to say that I calmed myself during this by deep breathing and chanting with Stuart.  Sometimes this mindfulness thing really works.  🙂

Now if I can just take each day as it comes and not worry so much.  My worrying isn’t going to make it better.  I think it’s time to get serious about my meditation practice.

 

Anyone out there go from feeling better to feeling worse again?  How did you handle it?

How do you deal with it when you know something is wrong, but the tests come back normal?

Anyone trying or planning on trying the GammaCore?

How are you guys doing?  Any news?  I haven’t been able to read many blogs lately, or be on social media at all, so many things going on.  But I want to keep up with all of you, so please, how are you?

 

 

Mindfulness Monday – change

On By WendyIn Chronic Illness, Mindfulness, Quotes5 Comments

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“Some changes look negative on the surface

but you will soon realize that space is being created

in your life for something new to emerge.”

~ Eckhart Tolle

 

“Life is a series of natural and spontaneous changes.

Don’t resist them;

that only creates sorrow.

Let reality be reality.

Let things flow naturally forward

in whatever way they like.”

~ Lao Tzu

 

 

**photo by W. Holcombe.  Tulip Magnolia in my backyard, the beginning of Spring 2018

All rights reserved.  Please do not copy without permission.

 

Life, it changes in an instant

On By WendyIn Chronic Illness, family16 Comments

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My husband’s stepmother (M) was on her way to a basketball game when she tripped and fell face first on cement.  In that instant, our lives changed forever, we just didn’t know it yet.

After the accident the only real damage evident was the loss of all her front teeth.  She was recovering and was going to be fitted with a bridge, but during her follow-up with her physician to discuss other symptoms she was having, they found that she had dangerously low sodium.   Low sodium can cause swelling, for the most part that’s not dangerous, but “when the cells of the brain swell, it’s much more detrimental.  Because the brain cells are so tightly confined by the skull bones, even a small amount of swelling can be dangerous.  This is particularly dangerous when sodium levels drop rapidly, causing brain cells to swell rapidly, Without immediate medical treatment, this rapid swelling could lead to coma and death.” (1)   M was quickly admitted to the hospital, however, she was nearly comatose before they could lower her sodium levels.

The severe drop in sodium caused havoc with her body, we knew she would require physical rehabilitation.  However, when her sodium levels returned to normal, it was obvious there was something still wrong.

M was having severe issues with her memory.  She could read, but she couldn’t comprehend what she was reading.  There was further testing, and it was found that she had a tiny subdural hematoma.  (later is was determined that the hematoma was worse than initially thought)  There was also talk of Alzheimer’s, as this runs in her family.  (from what I understand she was having minor memory issues before the accident)

Soon it became apparent that M would need long term care.  She is not expected to make a full recovery.  She will be entering a long term care facility in less then 6 weeks, and her children plan to sell her house in 6 months.  I’m not sure if they are selling it because the may need funds, because she is not expected to ever come home, or because it would not be a safe place if she ever did come home because as it is a split level and she has to be very careful not to fall, or a combination of the 3.  She also has osteoporosis and they’ve warned if she breaks a hip or something, they can’t do anything for it and most people often die from it.  (no, her children are not kicking dad out, this was decided by all involved)

M is one of the most logical people I know.  She was a computer programmer for years.  That’s pretty amazing since she is in her late 70’s and computers have come a long way in the last few decades.  She took out a long-term care policy years ago, knowing that Alzheimer’s runs in her family; she wanted to make sure things were taken care of if she also got it later, I wish Stuart had been able to get a policy like that, the insurance will cover all of the cost of the facility, and it’s expensive.  I never dreamed that a good assisted living facility would cost $6000 a month.  From what I understand, this place is just wonderful.  They even have dog and horse therapy.

Stuart’s father (Dad) and M got married about 7 years ago, about 7 years after Stuart’s mother passed away.  (I’m really not sure about the exact time in there)  He moved in with her and they have been living in her house.  This is a major life change not only for M, but also for “dad”.  “Dad” does own 3 houses of his own, but someone is living in 1 with the option to buy, 1 is too far out of town for him to travel to the facility M will be in, and the last one needs some repair.  He plans to sell the last one within the next year.  So “dad” has to find a new place to live.

We’ve been discussing quite a bit recently, before the accident, about where we’d like to make our forever home, where we’d like to eventually retire.  (well, when Stuart retires, I haven’t been able to work in years)  After hearing this news about M, we’ve decided to actively pursue moving to Tucson, AZ.  We have family and friends there, it’s warm there year round, and housing is less expensive.  We’ve discussed this briefly with dad and it sounds as if he would really like us closer.  We plan look for a house that has some kind of room for a guest to live-in; a guest house or little apartment would be ideal; that way dad can live with use without feeling like he is intruding on our marriage.  I’ve looked up doctors and I’m please with the possibilites.  I even found a group that supports adults with hearing loss.  Now, Stuart just has to find a job.

This is a major life change for everyone in our family.

It’s a lot to process.

 

In a moment, everything can change….drastically.

 

 

 

http://healthyeating.sfgate.com/results-critically-low-sodium-6200.html

Mindfulness Monday – How to

On By WendyIn Chronic Illness, Mindfulness3 Comments

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“Respond; don’t react.

Listen; don’t talk.

Think; don’t assume.”

 

~ Raji Lukkoor

 

 

“Begin at once to live,

and count each day as a separate life.”

 

~ Seneca

 

 

“The way to live in the present is to remember that

‘This too shall pass.’

When you experience joy, remembering that

‘This too shall pass’

helps you savor the here and now.

‘This too shall pass’

Reminds you that grief, like joy, is only temporary.”

 

~ Joey Green

 

 

** Early Spring Daffodil photo by W. Holcombe.  All rights reserved.

 

What It’s Like Currently Being a Student in America — Queerly Texan

On By WendyIn Chronic Illness7 Comments

I’ve grown up in a post-Columbine world. The talk of school shootings is not something new to me, I’ve been taught how to prepare for one my whole life. I’ve spent hours siting in dark classrooms, huddled in the corner with my classmates praying it’s only a drill. As of February, there have been a […]

via What It’s Like Currently Being a Student in America — Queerly Texan

as I read Alyssa’s words I kept thinking,

“Our Children’s Lives Are Worth More Than a Gun!”

I don’t care what you feel about your right to own a gun, it is not greater than the life of a child.

Under no circumstances does anyone need to own an automatic weapon.  Period.

The argument that we are blaming the gun instead of the shooter doesn’t cut it.  As I heard someone say yesterday, “If my child hits someone with a stick, I don’t blame the stick, but I still take it away.”

We must support gun control.

Please read Alyssa’s post, it speaks volumes.

 

 

 

 

 

Mindfulness Monday – Self Love

On By WendyIn Chronic Illness, Mindfulness, Quotes12 Comments

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“Maybe the reason nothing seems to be ‘fixing you’
is because you’re not broken.
Let today be the day you
stop living within the confines
of how others define or judge you.
You have a unique beauty and purpose;
live accordingly.”

~ Steve Maraboli

“Be nice to yourself.
It’s hard to be happy when someone
is mean to you all the time.”

~ Christine Arylo

“View your life with kindsight.
Stop beating yourself up
about things from your past.
Instead of slapping your forehead and asking,
‘What was I thinking,’
breathe and ask yourself the kinder question,
‘What was I learning?'”

~ Karen Salmnsohn

Always remember, you are doing the best you can; be gentle with yourself.

**self portrait by W. Holcombe. Please do not use without permission.

 

 

 

Do you feel inspired?

On By WendyIn Chronic Illness19 Comments

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We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do.  They don’t let their illnesses stop them.  They thrive despite their illness.  These people are supposed to be an inspiration.  We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.”  (does that really work?)

There always seems to be a celebrity who has the same disease you do.  As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?

Do they really inspire you?  Does it give you hope?  Or does it make you feel inadequate?  Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.

For me, it’s often the later.  I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.

It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms.  I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”.  This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”.  What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both.  They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this?  Not my insurance that’s for sure.  and just how safe is it?  After they send these messages, I wonder, do they think I’m not doing everything I can?

When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative.  You can inspire people to do bad things.  Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things.  They were very inspirational, just not like we have been conditioned to think of the word.

The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations.  I’m amazed by the people who undergo many painful medical procedures and still greet each day with love.  I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.

I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case.  When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything.  I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes.  What are we not seeing?  The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.

Then I hear things like, “Nicolas Cage suffers from vertigo all the time”.  Ummm, really?  All-the-time?  I could believe he has disequilibrium all the time, but full blown vertigo, no way.  I simply do not believe it.  If he has vertigo all the time and can function as well as he does, that would be a miracle.  I can believe that he may have recurring vertigo, but not constantly.  I’m pretty sure I’d kill myself if I had full blown vertigo all the time.

 

Who inspires you to be the best you can be?

Do you get positively inspired by famous people who have your illness?

Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?

Am I the only one who is rarely “inspired” by these stories?

 

*image is a screen shot from Dictionary.com

 

Mindfulness Monday – walking

On By WendyIn Chronic Illness, Mindfulness, Quotes13 Comments

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“Step outside for a while –
calm your mind.
It is better to hug a tree than
to bang your head against a wall continually.”

~ Rasheed Ogunlaru

 

 

“Take my hand.
We will walk.
We will only walk.
We will enjoy our walk without
thinking of arriving anywhere.”

~ Thich Nhat Hanh

 

 

We’ve been having some nice days here, which means I’ve been able to get out of the house and walk a bit more.  The photo above shows something I saw on my walk.  It made me happy.

Come, walk with me.  Oh the wonders we shall see.  From the mountains to the sea.

 

*photo  by W. Holcombe.  All rights reserved.  Do not use without permission.

Antidote for Clinical Trial Recruitment

On By WendyIn Chronic Illness5 Comments

I was so proud to be asked to participate in the following article.  Kim at I Tripped Over a Stone and Kali at This Spoonie Speaks were also also participated, both are excellent advocates, please make sure and check out their blogs.  Please see what we had to say on the subject of clinical trials, and add your voice by adding to the comments.  The people at Antidote really want to know what you think.  I hope you will feel we were successful advocates for the chronic illness community.

Clinical Trial Patient Recruitment: Advice for Researchers, from the Invisible Illness Community

antidote article

…….”We spoke with three patient advocates living with invisible illnesses about how researchers — from those involved in study design all the way to site staff — can better engage them and their communities and drive clinical trial patient recruitment. Here is what they had to say:…………  click here to read the whole article

Interested in learning more about participating in Clinical Trials?  Click on the big black button on the right hand side of my blog and you can search for trials in your area.  There is never an obligation, accept or deny any trial you are matched with.

Mindfulness Monday – animals

On By WendyIn Chronic Illness, Mindfulness, Quotes5 Comments

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“When I look into the eyes of an animal
I do not see an animal.
I see a living being.
I see a friend.
I feel a soul.”

~ A.D. Williams

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“Petting a dog can be one of the most
mindful,
peaceful,
and spiritual
moments you can have.”

~ Nicholas Montemarano

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“I have lived with several Zen masters –
all of them cats.”

~ Eckhart Tolle

 

*all artwork created by W. Holcombe.  Please do not use without permission.  All rights reserved.