Thankful Tuesday – Week 10

As most of you know I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

This week I’ve decided to get back to basics, I’m so very thankful for:

water drop. photo by w. holcombe. all rights reserved
  • Water. I keep a water bottle on my bedside table so I have water through the night. In the morning my darling husband always fills it up before he leaves for work so I have a full bottle for the next few hours before I get up. On Wednesday he took the bottle to fill and forgot to bring it back, this really made me appreciate that he does this for me every morning and that I have water available to me so easily all the time.
  • Scent Free Air. I went outside to sit in the sun one day this week and a bush was blooming. It is beautiful and a welcome sight, but it had a strong floral scent, that would be pleasant to most, but I have migraines and am very sensitive to scents; it was an instant trigger. I was very grateful that I was able to escape it when I came inside. I’m thankful I’m able to have a pretty scent free home.
  • Electricity. I’ve been through times when we’ve had to live without electricity for extended periods of time due to natural disasters, it was not fun. The biggest obstacle we had was no refrigerator. Everything in our freezer that we couldn’t eat fast went bad and we had no way to store any food or to get much food to be honest. We had no hot water, and no heat or A/C. (one of these power outages happened during an ice storm) These are all things you simply do not think about when you have electricity every day. When power goes out for a short period you are inconvenienced because you have no TV, computer….but when you have no electricity at all, you are very limited in life. There are many people who have no electricity at all.
  • Eye care. I went to the eye doctor this weekend, I’m so grateful that I am able to have quality eye care. It is very expensive, especially for my prescription. If I could not afford it my life would be very limited.
  • A home. I’m grateful I have a home. Many people do not have a roof over their head. Every time I leave my house I see homeless. It breaks my heart. I wish I knew of a solution to our homeless problem in America. What we are doing now is not working. We cannot just ignore it. It will not go away, it is only getting bigger. We are one of the richest countries in the world yet we treat our needy so poorly. We should be ashamed.
  • Transportation. I’m grateful that I have a car to get around in, even though I can’t always drive, at those times I’m even more grateful that my husband is able to take me places. I’m very grateful that I was able to drive myself to an appointment this week, something I haven’t been able to do for a few months. I plan to do it again tomorrow too!
  • A warm bed. Many people do not have a safe place to sleep. I’m grateful I not only have a safe place to sleep, but I have a nice place to sleep. I can be picky about my pillow and sheets, I’m so grateful for these things.
  • A loving husband, dog, and friends. I’m so thankful for my support, the love in my life means so much to me. thank you to all of you.

I’ll close with that today. What are some of the basic things you are most grateful for. I’m sure I left out plenty. Like the moon and sun….so much to be thankful for in this life is we just look.

but right now I have a migraine and I’m going to be grateful that I don’t have to go anywhere and I can go lay down in a very dark room.

I hope your week is filled with things you can be thankful for.

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Rare Disease Day 2019 – Okur-Chung Neurodevelopmental Disorder

Today is Rare Disease Day 2019. Normally when I post about Rare Disease Day I focus on my rare disease, but today I’d like to highlight a disease I’d never heard of before earlier this month. Actually no one had heard of it before 2016 when Okur-Chung Neurodevelopmental Disorder a rare genetic disorder was first identified. This is important to me because of this little guy, and other children like him.

Rowan and me a just a few days after his birth.

Rowan’s mom has been a part of my chosen family for over 20 years, so when they found she needed to be close to a neonatal unit for the last trimester of her pregnancy we were all too happy to open our home to her, her husband, and their little Rowan on the way. This is their story told by my dear friend Penelope:

My son was diagnosed with autism 3 years ago at age 4. But from birth, we knew he was special. Now we know why.

Things became complicated in my 3rd trimester. I was hospitalized with high blood pressure and suspected pre-eclampsia many times, and was induced the day I passed the 37 week mark. My son was born with very low muscle tone, and what the doctors called “dysmorphic features”…low set ears and eyes with epicanthic folds. They immediately raised suspicions about Downs Syndrome and geneticists at the hospital ran the tests they had at the time, including for Fragile X. They tested his heart. They couldn’t find anything in their testing and we were sent on our way.

Feeding issues started immediately. Low muscle tone and reflux. We went to measures that included thickening formula with a special thickener that had to made at just the right temperature, and he was prescribed reflux medication by the pediatrician. Things began to improve at about 18 months.

Things on the social front were delayed and different. I remember crying on the way home from my son’s cousin’s 2nd birthday party. They are about exactly a year apart, so the birthday boy turned 2 and my son had just turned 1. At the party of similar aged children, it suddenly hit me how differently my son behaved. As the mother of an only child, it just hadn’t been so obvious to me before.

My son didn’t walk until 22 months, after 4 months of physical therapy. Then we focused on starting speech therapy since he spoke a total of 10 words at age 2. He rated very highly on receptive language but almost a zero on expressive language. We worked hard and he began speaking single words, then phrases, but would only speak at home with us and seemed unable to speak in other situations. Selective mutism was suggested as a diagnosis. We were told he had a slow to warm up temperament. We were given the “developmental delay” label and enrolled in preschool special education services. We did speech, play, and occupational therapies. Meanwhile, other issues my son had included slow growth, gross motor delays, social and emotional delays, toilet training delays, chronic constipation, periods of low energy, sensory processing differences, and avoidance of peers.

The diagnosis of autism at age 4, while difficult, was almost a relief. It felt like an answer. Something to explain all the issues we uncovered one by one and tried to provide the right support and treatment for. We tried a mainstream kindergarten public school experience for him, everyone seemed to encourage inclusion and bringing services to kids in the class and selectively pulling them out, but the problem with sensory processing and other issues of autism mean that some kids, like my son, will struggle with the distracting environment, large class size, and rough and tumble and strict standards of a public school. Luckily, we found a private school near our home that specializes in providing an outdoor focused arts based intimate environment for kids with autism and other conditions. My son is in a class size of 3 kids to 1 teacher, and the environment is peaceful – a nature hike every morning and classrooms with neutral walls and plain wood floors, very low distraction and individualized attention – and he has blossomed and learned in this school.

Meanwhile, as part of a business trip with my company (that makes medicines for rare diseases) I visited a geneticist with one of our sales reps. In that conversation in discussing rare diseases, the topic of autism came up and when she learned my son is autistic, she encouraged me to pursue Whole Exome Sequencing (WES), that amazing advances were being made. Since we’d seen a neurologist the month before for suspected petit mal seizures, we asked for this testing on our followup appointment. The EEG did not show seizures in the time period they tested, but the neurologist agreed to submit the WES testing, even though he was realistic with us that only a small percentage of those tested get a result.

February 8, 2019. The day I clicked onto the portal to see new test results. The genetic testing was back. The largest word on the page was POSITIVE.

My heart stopped for a second. I couldn’t swallow. I held my breath and for the first time, read “Okur-Chung Neurodevelopmental Disorder.”

Roller coaster of emotions ensued. Sadness that we hadn’t known this from birth – selfish in the way that it would have made the path and understanding easier for us as parents. Relief that we had an ANSWER. So few parents of children with autism get an answer. Excitement that we can participate in active current research. Amazement that our son will be on the cutting edge for genetic autism research. Fright that there’s so much they don’t know, and happiness that there is something that they do. A feeling that we are no longer shooting in the dark, and have some idea of what to focus on and check for and pay attention to in future.

So many things go through your mind when you find out your son has an ultra-rare genetic disorder that has only been found so far in 50 individuals worldwide. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.

Genetic testing is experiencing an advancement at rates so quick that my son’s genetic disorder wasn’t even discovered until 2016. Just a few short years ago, Whole Exome Sequencing tests were very expensive and inaccessible. As the cost decreases, more and more children, especially those with autism, are being tested. Which means more and more will be diagnosed with rare disorders and syndromes. This will be so important to so many individuals and families, providing supportive patient communities, gatherings, research, and even cures.

Happy Rare Disease Day 2019!

For more information on Okur-Chung Neurodevelopmental Disorder please visit their website: https://www.csnk2a1foundation.org

Genetic Test for Medication

When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.

You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of  test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.

Sample of one page of a GeneSight report.

After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.

We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)

I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.

I’m sure I’ve completely confused you. It confuses me!

Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.

I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.

I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.

Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.

Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?

I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.

Migraine Awareness Month, my migraine update

migraine awareness
I don’t know who to credit for this image, but it is so true I had to use it. If you know who I should credit, please let me know.

June has been Migraine Awareness Month.  I had planned to do a few posts about migraine, what it is, who gets it, how disabling it can be, new treatments….ect… unfortunately I’ve been having some severe migraines this month and simply haven’t been able to focus well enough to write and get all the facts straight.  It’s not just the pain of the migraine that has stopped me, it’s all the other symptoms that go with it, the fogginess, nausea, insomnia, sensitivity to light, sound and smells….I simply can’t concentrate or get things done.

New Migraine Doctor – On Tuesday I saw a new migraine specialist.  He’s with Banner Health/University of Arrizona’s neurology department.  First impression, he was pretty thorough, and seemed to know what he was doing, however, there were some things he said that I felt were just rude, but it may just be his sense of humor that I didn’t get.  For example, after we went through my history he looked at hubby and said, “Did you know she had all these issues before you married her?”  Then he laughed a little and said he was joking, but honestly that did not make me feel good at all.  But he did take the time to go over my records and listen.  At first I felt that he was going to be a butt, because when I told him all my different types of headaches (chronic migraine, vestibular migraine, cluster headaches, and Intracranial Hypertension), he said, “I don’t believe it”  He questioned if I could have Intracranial Hypertension on top of the rest.  I told him I had numerous lumbar punctures and that diagnosis came from Duke, he seemed to understand then that I really have been diagnosed with these things, they weren’t just speculation.  We went through a huge list of drugs I’ve tried and if they worked at all, and we discussed other treatments that haven’t worked (acupuncture, chiropractic, a ton of supplements….).  He finally said, “So, it sounds like nothing has worked” and I agreed.  (Oh, I was given a complete exam, testing all my reflexes, checking my optic nerve….he really was thorough)  He left the room for a moment and came back with a gammaCore.

gammacore
image courtesy of http://www.gammacore.com

Using the gammaCore – The gammaCore is a non-invasive vagus nerve stimulator.  It’s pretty darn cool actually.   Most of what I’m including next can be found on the gammaCore site, you can read more about it there if you’d like.  https://gammacore.com/

“gammaCore (nVNS) sends gentle, patented stimulation through the skin to activate the vagus nerve, providing relief from migraine and cluster headache pain in a different way than drugs.

  • The vagus nerve is an important highway of communication between your brain and many parts of the body
  • The vagus nerve plays an important role in regulating pain”

He gave me a demo and it was interesting.  You take this little device and put a gel on the electrodes then place it on your neck, right where you’d check someone’s pulse, you increase the signal until you get the results you are looking for (a twitch of your mouth or side of your face) you keep it there for 2 minutes and it cuts off by itself.  They say there’s a beep, but I can’t hear it, I just notice that it stopped, I don’t know why you’d need a beep to tell you that it stops, you can feel it.  People like to give sounds for all kinds of things that really don’t need them, in my opinion anyway.  After it stops on one side, you repeat it on the other side, and that’s it.  That’s a treatment.  If pain persist after 20 minutes, do it again.  After 2 hours, if you still have pain, or if it returns, repeat a treatment.

I will be receiving my gammaCore in the mail in a few days.  The first month is free, I don’t know how much it will cost after that.  When it was first approved earlier this year Stuart called to see if insurance would cover it and they weren’t there yet.  If it helps, I sure hope that insurance will cover at least part of it.   You are supposed to use it at the first sign of migraine pain, unfortunately I am NEVER without a headache, so I need to use it at the first sign that it’s getting bad.  I still don’t feel that the doctor understood that I have a headache ALL THE TIME.   I actually plan on using it as often as I can to see if I can get some lasting relief, maybe I’ll actually have a day without a migraine!  I am cautiously optimistic.  If it doesn’t work, I haven’t lost anything.  If it does work, I will have to decide if I can afford it.

One HUGE thing I hate about the gammaCore is that it’s disposable.  Why can’t they make it so you can charge it or change the battery or something, having to replace this device every month is so wasteful and bad for the environment.  I’m having a very hard time coming to terms with that.  I can only think that they do it this way so that people will have to buy a new one each month, that’s just a rip-off.  What am I supposed to do with all these used devices?  If nothing else, they need a recycling program.  (Yes, I will be suggesting this to them)

migraine-treatment
image credit https://www.marijuanadoctors.com/conditions/chronic-migraine/

Medical Marijuana – I also had an appointment on Wednesday to get approved for my medical marijuana card.  Medical marijuana is legal in Arizona and severe migraine is on the list of conditions that can be treated with it, so I decided to apply.  I should get my card in a couple of weeks.

Full disclosure here, I have been using marijuana to help me for a couple of years now, but I had to rely on what I could get on the street, I don’t know the strains, or anything like that, so results have varied.  Sometimes when the pain hits I can vape a little and it is gone, other times it just makes me feel funny, and other times it does nothing.  I’m hoping that getting it from a dispensary where I will be assured of quality and will know what strains and hybrids I’m getting, I will be able to medicate more successfully; more pain relief with less high feeling would be optimal. After I started using a little every night before I go to bed (I made brownies) my vertigo has been reduced drastically.  When I can’t get it, I have more vertigo again.  This is not an approved condition in Arizona (Meniere’s is an approved condition in some states), but it should be.  I can’t be 100% sure that it’s the marijuana that has helped my vertigo, but it would be some strange coincidence if it isn’t.  It even helps stop an attack….if I start to have a vertigo attack I will vape just a little and it will often stop it, even if it doesn’t stop the vertigo, it stops the vomiting.  I cannot stress how important that is.  The only reason I will go to the ER with all of this (vertigo or migraine) is if I’m also dehydrated.  Throwing up for hours on end will cause dehydration, I know that the marijuana has stopped me from going to the ER numerous times.  I’m so very grateful I have found some relief through medicinals.

As I navigate this new world of treatment, I will post more about it and give you lots of updates.  To learn more about how medical marijuana can help with migraines there’s a great article here: https://www.marijuanadoctors.com/conditions/chronic-migraine/

Now, it has taken me many hours to write this post, so I will close for now.  Hopefully my head will calm down soon and I will be able to write more often.  I would like to thank Lorraine for being so kind and helping me keep up my weekly Mindfulness Monday posts.  They mean a lot to me and it was really hurting me when I couldn’t post.  Thank you Lorraine, you are the best, I love you my friend!!

Have any of you tried the gammaCore?  If not, would you?

How about medical marijuana, have you tried it?  Did it help?

I’d really like to know your experiences.

 

Mindfulness Monday – Family (Ohana)

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“I don’t care whose DNA had

recombined with whose.

When everything goes to hell,

the people who stand by you

without flinching-

They are your family.”

~Jim Butcher

 

“That’s what people do who love you.

They put their arms around you

and love you when you’re

not so lovable.”

~Deb Caletti

 

“You must remember,

family is often born of blood,

but it doesn’t depend on blood.

Nor is it exclusive of friendship.

Family members can be your best friends, you know.

And best friends, whether or not they are related to you,

Can be your family.”

~Trenton Lee Stewart

 

*photo taken at Wendy and Stuart’s wedding (I’m the one in yellow)

Thank you to all who are members of my Ohana.  I love you.  ( Part of Hawaiian culture, ʻohana means family (in an extended sense of the term, including blood-related, adoptive or intentional). The concept emphasizes that families are bound together and members must cooperate and remember one another.’)

“Ohana means family. Family means no one gets left behind or forgotten.” ~Lilo and Stitch

family-1
Just because they are gone, doesn’t mean they will ever be forgotten.  Pets are Ohana too.

Mindfulness Monday – Pain

water scene
painting by W. Holcombe 

“Pain can change you,

but that doesn’t mean

it has to be a bad change.

Take that pain and

turn it into wisdom.

~Dalai Lama

“To diminish the suffering of pain,

We need to make a crucial distinction

Between pain of pain,

And the pain we create

By our thoughts about the pain.

Fear, anger, guilt, loneliness and helplessness

Are all mental and emotional responses

That can intensify pain.”

~Howard Cutler

“Pain is not wrong.

reacting to pain as wrong initiates

the trance of unworthiness.

The moment we believe something is wrong,

our world shrinks and

we lose ourselves in the effort

to combat the pain.”

~Tara Brach

 

 

*painting by W. Holcombe.  All rights reserved. Please do not use without permission.

Mindfulness Monday – Beauty

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“In every bend of time

there is some surprise,

joy and beauty.

Mindfulness is the

light to discover it.”

~ Amit Ray

 

“Beauty surrounds us.”

~ Rumi

 

“Because of your smile,

you make life more beautiful.”

~ Thich Nhat Hanh

 

“Everything has beauty,

but not everyone sees it.”

~ Confucius

 

* As I was walking into the doctor’s office, I saw this flower; it was all alone in the middle of a parking lot, sharing it’s beauty.  I had to share it with you.

photo by Wendy Holcombe.  Please do not use without permission.

Mindfulness Monday – Self Love

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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?

inspire

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

 

A Weekend Getaway

Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.

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Kiki thought she would help.

Early last week I realized that this was his 50th birthday!  Oh my goodness!  I hadn’t planned anything really.  Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone.  I was determined to do something special.  I was on a mission.

This mission was impeded by the fact that I can’t talk on the phone or drive.  Hmm, so what could I do?   What did I do?

First I decided I wanted to take him away, not far, just away from our house.  I wanted to spoil him, so I started looking for a hotel that also provided massages.  First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called.  What to do?  At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband.  Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did!  She called and stayed on Messenger with me so she could ask me questions.  It worked out great!  It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements.  She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay.  She helped us book a Spa Indulgence weekend.  The girl at the spa was also amazing.  She helped us set up massages for both me and Stuart at the same time.  I wanted a special type of massage, Lomi Lomi, and she made sure I could get it.  (there is only one massage therapist who does this type of massage)  Again, my friend was amazed by how helpful these women were.  It was a very good experience.

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from inside our hotel

I also wanted to take us a little picnic, that way if we had the munchies during the night,  we didn’t have to go forage for food (or spend outrageous amounts on room-service).  Really, I just thought it would be romantic.  Again, an obstacle was in the way, I can’t drive.  How would I get the food for the picnic without Stuart’s help?  I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered.  I had a little difficulty because the first place I tried to order from had to call to get payment information.  I couldn’t give them my credit card information over the phone, since I can’t talk on the phone.  Bummer.  Of course, I didn’t find this out until AFTER I had done all my shopping.  pfft.  So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work.  I did have to tell him we were going away for the weekend, but the picnic was a surprise.

I also got our pet sitter set up.  That was another issue I had to sort out.  Our normal pet sitter was going out of town, but she offered to take Kiki with her.  I know that my dog hates to ride in the car, she gets car sick…poor puppy.  So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it)  He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place.  Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride.  Hmmm.  Kiki went on a little trip with her normal sitter.  It all worked out, but it was an ordeal.  And I handled it all through texts, without help from Stuart.

Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help.  He does so much for me, doing this for him meant the world to me.  He was pretty happy with it too.  I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.

While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything.  Of course, Stuart wouldn’t have thought it was ruined, but I would have.  It would have broken my heart.  As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me.  I was very dizzy all day and simply felt, bad.  Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises.  I was hoping exercising would make me feel better, it didn’t.  We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen.  We just vegged and spent time together.  Then we had our Spa Experience.  oh my goodness….

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all ready for my massage

When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear.  We were given fruit scented water to drink as we waited.  It was so relaxing, I’m relaxing right now just thinking about it.  We were then taken to a darkened room and were given most delectable massages.  It was a dream.  Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving.  There were also snacks and tea available if we desired.  There were these fabulous lotions there and I actually found one that I like.  Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon.  Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!

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On both nights we had dinner at the restaurant in the hotel.  The first night we had steaks, they were delicious.  I felt that the vegetables had too much oil on them, but they were still tasty.  The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil.  They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel.  Except for desert, I had chocolate crème brûlée, it was divine.  I saved some and had it on both nights.  Stuart had a salted caramel cheese cake, it was go good.  A bit too sweet for me, but very good.  Really the crème brûlée was a bit too sweet for me too, but it was oh so good.

There’s more to tell about this trip….but I might keep that to myself.  😉

This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies.  Stuart is worth it.  It was nice to take care of my caregiver.

Sometimes, it’s just worth it.

 

Have you accomplished something that you didn’t think you could?

Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?