Cuter than Prince Harry

...who by the way is in town. Just sayin'.

Graduation breakfast for

Reach your Peak scholars

Andrew walks across the stage in 18 days!

With Andrew's graduation quickly approaching let's say I am enjoying the fruits of his labors.  :)  A small graduation breakfast sponsored by one of his scholarships served the best pineapple ever.  I know we're not there for the food.  Andrew and a few peers pick up their awards.  I took plenty of pictures and will post a photo as soon as I learn how.  I-pads and Blogger are  mortal enemies, I swear.  Why can't they get along? And why do I have to keep Safari?  I did it before, why can't I remember how?

People say ipads are intuitive but not with blogs.  A random statement.

Last night he came over.  We talked for hours.  Should he get a college ring?  (yes, he decided) His future, our past memories, current worries were all shared.  I made it till 11p.m., a record I shall treasure but the daschie woke me up at the usual time by trying to clean out my ear.

The bookstore clerk asked if "I had a large family" when I made a purchase.  Alex made a face, only the day before I was depressed with all the missing family memebers... I sputtered, I think.  I have not been asked THAT question.  I said no.  It weighed on me for awhile.

When people ask questions that come with sensitive answers I always pray they can handle the truth.

This morning I saw a woman my age at the store with two cochlear implants.  For some reason I felt compelled to say something about her implants.  I have one too and "it's the same brand" I tell her.  We talked/signed for awhile over coffee and found out we are friends with the same people.  She was a true delight.  I will see her again.

Still no word from Biogen regarding my new MS medication.  I can't help but wonder if Medicaid will deny this one. The neuro did not think it would be an issue since I had reactions to Betaseron and Copaxone.  Hmmm... I wonder.  Truth is, I am not in a hurry.

Happy May to you!

My pretty girl

Nicole

"How to lose a loss in 12 easy steps"

A nightmare of a dream last night - I was the presenter, having figured everything out.  Loss can be conquered in 12 easy steps!  Come on in, admission is free!

I walked across the stage (with heels) to give my presentation only to find my entire audience with their backs turned to me.  After a few moments I started my presentation in sign language.  They came to hear but they don't (can't?) listen.  

It was an eternity in dreamland - I finally spoke verbally to the backs facing me.  All I said was "I don't have answers, we are all on our own".

The crowd, en masse stood up and we prayed for solace.

a little bit of this and that

Soon I start BG-12 but first I shall party!  It is my son's big month.  He graduates from UCCS with no debt and a job he loves.  He is on his way, and has been for some time.

The other day, a t/m from him out of the blue letting me know he was going to be on the radio in a few minutes.  Unfortunately I did not understand a word but I did beam with pride.  :)

Plans are underway for a zero net-impact graduation party...with over 100 people coming!  Fun times, let them begin.

We went to the Blue Man Group a couple of weeks ago.  I love those blue peeps, I do.  The only change noted were the Twinkies - this group smashed Twinkie Lites. I don't know about you but if I am going to eat a Twinkie it will be the full-caloried version because hey, what is the point?

Grief class is changing.  There are new people including one mom who lost her son a mere week prior.  I remember the week after Nicole died.  Denial, faking FB happiness and political what-not.  It is an empty place, one I wish to never see again.

Back to BG-12- I passed the blood tests with flying colors (for a change) and my PCP agreed to follow me a little closer than Biogen recommends and you, my friends will hear about every squeak it causes.  :)

A question for those who still read... how many hours of sleep do you need?  I need so much sleep.  Twelve hours makes me happy!

Guest Blogger, Valerie Johnston: Making the Most out of Living with MS

Making the Most out of Living with MS

Let’s get the bad news out of the way: There’s no cure for MS. It’s a tough reality, but (at least for now) it’s reality nonetheless.

Now that we’ve finished up with that, let’s take a look at the good news: The prognosis for those with MS is nearly as good in terms of lifespan as for people who don’t have multiple sclerosis, and there are lots of ways those with MS can make the most out of their lives.

1. Exercise (Moderately)

If you’re able to exercise, it can be one of the best forms of therapy for the body and the mind. Psychologically, exercise is hugely important because it allows you to reduce stress and process your thoughts. Depression has been shown to have a negative effect on MS (and other diseases), and exercising helps produce the chemicals in your brain that ward off unhappy feelings. In addition, the physical benefits of regular exercise can be great for those with multiple sclerosis. Improved muscular strength and cardiovascular health are both important, so try to exercise for at least 30 minutes twice each week. There’s no need to kill yourself with exercise, but if you’re feeling up to it, you can push yourself with a few extra days of activity.

2. Sleep It Off

Sleep is important for all people, but it is particularly important for those with MS. Fatigue can be a major problem as a result of this condition, and lack of sleep and energy can lead to problems of depression. There’s a strong correlation between MS and depression and sleep troubles, but don’t let those numbers get you down. Instead, think about how great good nights of sleep really feel. Talk to your doctor about establishing a good sleep routine so that you can wake up with more energy and avoid the negative feelings that come with fatigue.

3. Maintain Healthy Habits

You drew a bad hand; there’s no reason you should make it worse with bad habits. Smoking, for example, is one of the biggest factors in the incidence of multiple sclerosis, and it can increase complications with the condition after MS develops. If you’re a smoker, toss out your last pack now so that you can get on the right track toward healthier living. Being healthier in general will help you reduce the development of MS, as other conditions (like diabetes and high blood pressure) can aggravate the effects of the disease.

4. Get the Support You Need…

Talking it out always helps. As stated, the psychological part of dealing with MS is one of the most important parts of the process. Dealing with this condition (or any condition) can have you feeling pretty low at times, but discussing the emotions you’re feeling as a result of your condition can be hugely helpful. Don’t be afraid to reach out to support groups or to just chat with friends about your feelings. Keeping those thoughts bottled up is a good way to add stress to your life and make things a lot harder on yourself.

5. …Literally

And don’t forget that there are all kinds of implements out there now that can make everyday activities a lot easier. For example, if your muscles have trouble dealing with standing for a long period of time, put a stool in the kitchen to give you a place to sit while doing chores. The same goes for the shower: You can pick up a seat for the shower at any medical supply outlet. Retaining your mobility is vital, so be sure to pick up any mobility devices that might help.

Valerie Johnston is a health and fitness writer located in East Texas. With ambitions of one day running a marathon, writing for Healthline.com ensures she keeps up-to-date on all of the latest health and fitness news.

Andrew

Andrew graduates from UCCS next month.  A text message this morning indicated he is ready to go!

I can't wait to see what he does.

There is a lot I can say about him but I try not to talk about him too much on my blog.  :)   I work hard on maintaining internet distance from my son as not to embarrass him as mothers are prone to do.  I am proud of him - it has been a long journey for him.  Nicole is proud too, I know.

He has big dreams and seeing them come true is fun.  He has a job he loves and is starting a really neat business...or two.  I hear he might start a blog and if he does I will share the link.

MS:  Don't you love allodnia?  My entire abdomen feels like a severe sunburn.  Brushing hair hurts.  My hair follicles feel out of alignment.  My hip is out of kilter.

Fun times!

The politics of grief and MS

Hurricane Katrina.  September 11, 2001.  Sandy Hook.  We grieve together.  Everyone supports everyone.  We are in this together.  We relate.  We light candles, we hold vigils. We leave tender notes and teddy bears to comfort ourselves.

I have heard it said "Grief is a country that looks different to each person that enters."  For me grief is a lonely island.  As a single mom I long for new memories.  People to tell me about Nicole, good and bad but everyone is gone.

Alex does not know Nicole except through my memories but he is a good listener.

Support groups - I am deaf.  "Please don't cover your mouth and sob" would be as helpful as slapping them - never interrupt a sobbing mother who lost a child a month ago with a "What did you say"  question.  (even if you are deaf)

Single deaf mother with MS seeks support group 

for single grieving deaf mothers with MS

The response rate is underwhelmingly low.  :)

I think my point is this: we as people understand grief collectively but not singularly.

I want to do something different.  Something that incorporates the loss of my daughter and the wonderness of my son.  I really want to flip a house so I don't flip out but if wishes were horses beggars would ride.

I waver back and forth on BG-12 for my MS. My appointment is soon but I am scared.  I flunked two, why would the third one be the charm?

Now if I had a bathroom to demolish...

Nicole's cat: Boomerang

This is Boomerang, Nicole's cat.  After Nicole died I gave her to one of Nicole's friends.  This is the most recent picture.

Once I had a pan of pork chops cooking in the iron skillet.  Nicole and I were on the couch talking - we heard this loud screech and Boomerang had a hot pork chop in her mouth!  Despite it being hot, she would not let go.  Instead she screeched and ran with the pork chop in her mouth.  

Another time I had a package of fish thawing out in butcher paper.  We decided to go out to eat instead.  I could not find the fish so I assumed someone else put it away.  The next day I could not find the fish so I assumed it was gone even though it had not thawed out completely.  A few days later there was a horrible smell in the computer room.

Boomerang had dragged a package of frozen fish up a full flight of stairs and hid it in the computer room.   

Funny cat!

BG -12, or the furniture polish drug

Tecfidera (dimethyl fumarate) -

Lots of questions with no answers but I am going to polish myself up with this new "furniture polish drug".  It does not come with a lemon-scent.  :)

After some discussion re: side effects, I start as soon as she gets the paperwork done in about three weeks.  Nausea, GI distress, flushing are common side effects but things settle down after a month or so.  Huh...let's hope.

I turned down Aubiago after Medicaid approved it to wait for this one.  Another turn at picking a poison - this time no needles.  Needles don't bother me but I DID get tired of injecting hives of bees.

This will be my third try at an MS drug.... Betaseron gave me goiter and kept me in bed for days and days on end.  Truly a blur, that one.  Copaxone was second- the usual "bee stings" complaint, with certain "recommended injection sites" I would not do.  My last Copaxone injection was memorable.  A dinner plate size chemical burn appeared on my belly.  A photo is on this blog, somewhere.  It reminded me of a huge port-wine birthmark.

Now it's BG-12's turn... anyone else going to jump on this one?

The new Pope

I am not Catholic but I have a crush on the new Pope.  The election of Popes intrigues me from a historical perspective but not a religious one.  Too much gold, velvet, pomp and circumstance is on display.  Popes appear in papal robes and were treated like a King.  Look! A new gold ring!  (but the sex scandals took the shine off)

Our news covered the papal election almost non-stop.  I grumbled to Alex that one would think the Pope was in town.  I read Matthew 7:15, 24:24 a long time ago.  Anyone wanting to get into a scripture war with me wins automatically because I read the Bible like a BOOK.  Otherwise it makes no sense.  And that includes the Old Testament - when it it become defunct?

But this new Pope Francis behaved strangely. (was it a slow news day?)  He is not Pope-ish.  No, this Pope has hope.  He is at one with people. People, not Catholics.  I can see him embracing Buddhists and non-believers. (if they wanted a one)

I do not think about religion often but I do think about God, heaven, hell, spirituality, the meaning of life/death and all its whytofors...is that a word?  Whytofors?  A word I use while speaking or writing  It must be a word.  I think about God a lot but no one would know unless they read this post.  I need to know my daughter is safe and I will see her again.  And, hell is on earth.  Amen.

Someone said you could not separate religion from God but I believe you can.  Does God care if he is declared Baptist, Catholic or Methodist?

I told you in an earlier post I counted up all the Family Bibles.  Today I counted the number of grief books. I have eight.

They sit, mostly unread.

"Must be fluent in Spinach"

As I walked into the room where our grief group meets, I saw the handriting on the large whiteboard.  "Wanted: UCCS Instructor, must be fluent in Spinach".   Spinach was capitalized.

Somebody find Popeye, there's a job opening for him!

Life in the preview pane

When you post you have the option of viewing your would-be post in the preview pane.  Spelling errors become apparent (I admit - sometimes I don't care) and you have the option of fixing your errors before everyone sees them.

Life is not like that.  What happens, stays happened.

As we stumble from crisis to crisis, much like Congress (only we are much smarter) I wonder when it will stop.  Nevermore, says the raven.  Annabel Lee and Lenore have invaded my dreams.  Poe was a favorite of Nicole's.

I see my life errors in the preview pane.  I cannot go back and fix them.  Besides there are too many errors to fix.  I would start at birth.

Sequestration hit us hard. A delay in emergency unemployment and another unpaid waiting period.  Rent is high.  A move is costly.  No decisions have been made.  I told Alex I wanted to sell every solitary thing.  Except our mattress.  An old Tempur-pedic of mine collapsed.  A 25-year warranty was in place,  a new one delivered.  Thank you God.  I did notice the warranty was 20 years this time.  I will either be gone or very, very old.

But selling "everything" to escape memories is not an answer.  Keeping five sets of silverware for the same reason is not either.

I have what I not so jokingly call the "Bible Problem".  In the beginning I only had mine, from my childhood.  Now- I do say it this way... "I have a collection of dead people's Bibles".

My life in a dead people museum, I mumble too often.   All the furniture the kids grew up with plus additions from everyone deciding to die, en masse greet me every morning.  A house full of "stuff" but no house to put it in.  Meanwhile we dream about flipping one.

Andrew's great, great, great grandmother's table sits in the corner covered by my grandmother's crocheted tablecloth and my mother's baskets.  I spot room for all the Bibles.

Mom and my brother moved suddenly to another state - a family crisis.

***************************

Andrew and I went shopping.  We never shop together nor do either of us shop.  He needed new duds.  It was fun telling him how to spend or not spend his money!  :)

Guest Blogger: Katie Brind'Amour

In case you forgot (ha!) I still have MS- I jokingly call it "Multiple Screw-ups".  A refresher course if you will from Katie Brind'Armour.  (try saying that name five times fast!)

Many thanks to Katie for her guest post!

Word Salads Guest Post

Katie Brind’Amour

The Shape of Your Treatment Plan at Each Stage of MS

No matter the stage of MS you’re currently in, it is important to know what you can do to fight the condition, its symptoms, and its progression. Although research is underway everyday, the results seem slow in coming. Do what you can using what is known now to give yourself the best odds possible.

The numerous stages of MS, described in-depth by Healthline, vary in progression and symptom severity. To keep this article a manageable length, I’ll just focus on the main stages of MS described by the National Multiple Sclerosis Society. In consultation with a physician, target your interventions and treatments to your particular symptoms.

Pre-MS: Before the Diagnosis

If you have not officially been diagnosed with MS but are at a higher risk of the condition due to test results or family history of the illness, ask your doctor about early treatment options. In some cases, you may be able to beginmedications to slow the disease course; in others, your doctor may simply suggest general preventive techniques.Ask about vitamin D supplements, eat a balanced diet, and begin an exercise routine.

Even if you do not receive a diagnosis of MS for several years, these changes may help you fight off some of the earliest MS-related problems. Practice Kegel exercises, aim for a mix of cardio and strength training, concentrate on maintaining coordination and balance, and incorporate cognitive exercises into your daily routine (mix it up with Sudoku, word searchers, and other puzzles).

Newly Diagnosed MS and Treatments

Unless you are initially diagnosed with a rare form of progressive MS, chances are your symptoms are still rare or are mild. At this stage of the disease, medications to slow the development of the condition can be effective. In addition, always opt for therapy before scooting straight to assistive devices if possible. This means working on balance and mobility before buying a walker, checking out free YouTube speech therapy before avoiding conversation, and even reading up on simple dietary changes to help avoid depression and cognitive decline. Fighting early symptoms with health maintenance efforts can not only slow the disease progression but also help you live with more confidence, a higher quality of life, and fewer painful reminders of your condition.

Relapsing MS

Also called relapse-remitting MS, this stage of the condition initially affects about 85% of individuals with MS. Although periods of highly prominent MS symptoms occur, so do wonderful periods of remission, during which symptoms of MS may be hardly noticeable or entirely absent. During this stage of the condition, symptoms develop slowly.

Some people with MS may never noticeably progress from this stage to more debilitating phases of the disease.Because the exacerbations tend to get worse in future relapses, identifying your relapse symptoms can help you combat the likely symptoms you will experience with the next attack. Although attacks are hard to predict, a regular regimen of therapy, exercise (think yoga!), and cognitive training can help prepare you for the climb back to normalcy. In addition, corticosteroids are frequently used during (and rehab after) exacerbations to help you recover more quickly.

Progressive MS and What to Do About It

Progressive MS means the condition is advancing steadily—with or without periods of symptom remission or improvement. There are three types of progressive MS: primary, secondary, and progressive-relapsing MS. At this stage, MS medications and drugs to treat side symptoms (like urinary incontinence) may be coupled with physical therapy or speech therapy. Although there are a few decent treatment options for slowing the progression of secondary-progressive MS, the National Multiple Sclerosis Societyreports a lack of good treatments for primary-progressive MS.

Fighting to maintain your control over symptom severity may be key to staying positive. Treating individual symptoms, as discussed above, can offer relief of a wide variety of ailments related to MS.

Learning to Live with Advanced MS

By it’s very nature, MS is a progressive illness, and for some people it worsens significantly over time. In the advanced stage of MS, treatment options often change a bit more. Although symptom-specific drugs and therapies are still relevant, assistive technology and environmental alterations may become the best available treatment options. Instead of treating certain MS symptoms, the focus may shift toward making your house, car, and workplace more livable for you—from adding wheelchair accessibility to installing support bars that will help ensure your independence and mobility.

In addition, supplements and targeted therapies that help you avoid related conditions—like osteoporosis or bed sores—can be crucial for helping you weather the storm as comfortably and healthily as possible. Finally, don’t forget! Physical therapy, speech and cognitive therapy, emotional support, community connectedness, and pharmaceuticals can be at least as critical to maintaining wellbeing during this stage of MS as during any other.

Author Bio: Katie Brind’Amour, MS, is a Certified Health Education Specialist and freelance health and wellness writer. She contributes to sites such as Women’s Healthcare Topics and Healthline. In addition to writing about chronic disease management, Katie enjoys bargain shopping and experimenting in the kitchen—with or without following actual recipes! She is also working on her PhD in Health Services Management and Policy.

The Ultimate Deprivation

Bereaved parents indeed do feel that the death of their child is "the ultimate deprivation" (Arnold and Gemma 1994, 40) 

Then.... 

The sorrow for the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open; this affliction we cherish and brood over in solitude. - WASHINGTON IRVING, THE SKETCH BOOK 

A duty to mourn, grieve and remember - the only way I have to reconnect to Nicole.   I am still her mother even if she is gone.  I do not neglect my son, nor do I take less joy in his love.  But we both know she is gone.  She would not want us to live in grief but in my defense, I can't say she would do better herself.  So there.

Grief is a sorrow we cannot abandon even if we deeply desire to.

Nicole's alcoholism and subsequent death recolored my world.  It is hard, but not impossible to find small things to be grateful for during the dark times. As a single mom, I have no access to those who know her well - shared memories bring comfort and joy and they are no longer in my life.  I crave more little memories - her life and death baffle me.  I want to know what others know...why should her death keep me from knowing all about her?

Alex has never met Nicole but a day does not go by without acknowledging she is not in my life anymore.

There are many days I long for respite from grief - to feel  nothing but joy, to have days where the sun is bright, the skies are blue and all is right in my world for the day.

As a single mother with advancing MS my support system is unique.  Alex grieves with me but he has never met Nicole.  I can tell him about her - how she loved the elderly, her massage therapy work and her passion for drawing.  He can only listen and comfort.  He cannot share any stories.  He can only imagine what she was like.  He can only listen and he does that well.

At grief class last week we had a new grief counselor.  A male, this time.  I like him a lot.  He saw I was quite upset that I lost my daughter - in my mind Nicole had an enormous amount of living to do.

At times I resent seeing the world function without her in it... how can that be when I am not fine?

The grief counselor told me everyone had a story... I challenged him on that issue - he had five children, his daughter just became engaged a couple of week ago and .... to me it felt perfect.  So I asked what HIS story was because everything was going well for him.  Or was it?  Five children (none had died) a home, a job, what more did he want?  But our talk was not over.   Like me, he suffered multiple losses.

He is a man full of smiles and gentleness. I am gentle but not full of smiles.  I want to smile more. I want to feel my smiles and lose myself in genuine happiness.

When I look in the mirror I do not see myself.  I see another woman and I do not like her because I do not know her but it is me.

Two recurring dreams - for some reason the government put Alex and I in a rock tumbler to live until we were polished. It takes a long time to polish rocks - I bang on the door of the tumbler and ask if "today is the day...".  We have yet to escape from the tumbler.

The second recurring dream - I am staring at my reflection in an rather ornate mirror.  An old, but very wise woman is holding it up. She wants me to see my life reflection.  At the bottom of the mirror there is a little tray.  The elderly woman tells me this is my "Life Reflections Mirror". No matter where I moved, the cracks in the mirror followed my face.

She tells me the secret to being happy again is to use the tray at the bottom of the mirror to re-arrange all the life cracks into the folds of my hair, where they would not be seen. When I wake up I am still re-arranging the mirror pieces but I have yet to wake up with the cracks hidden.

**********************************

My mother remains at the skilled nursing facility with no diagnosis. Tomorrow is another day.

Should I start with 911?

It has been too exciting of a month and not in a good way.  Mom has been in the hospital three times and is now in a skilled nursing facility.

Three hospitalizations, a 911 ride, two colonoscopies, blood transfusions, infections, pneumonia, have left us weary with no answers. Her lab tests keep coming back negative. Everyone wants a negative test result but no one wants to accept a negative test result because it means more tests...

And there's this...

Alex is looking for a job 

and 

is there anyone hiring? 

I have been shying away from blogging or reading other blogs because there's nothing to say.  I crave normalcy.  I don't like worrying about rent, utilities or the price of food.  Unemployment is up in two weeks and Alex will have to apply for extended benefits when all he wants is a job.  I cry about Nicole, I cry about everyone who has already died in my now very small family.  

I don't want to cry anymore.

The other day a woman asked me the "what do you do and do you have children/grandchildren" and as I have mentioned before... I don't know what I "do" because I don't "do" anything. 

I have no idea how to fix the rest of my life but a job for Alex would be a good start...

Let's go, February!

Mom woke up with a blown out eye pupil the other day.  Alex told her to take an aspirin and off to her Dr. we go. It's ER time, again. Mom says she will never go back to him again. I told her I would tell him that since she really likes this primary care Doctor. 

When we left the Dr.'s office Mom's temperature was 97.6.  A few hours later in ER she developed a fever of 103 with pneumonia, a lung infection and those were not her presenting symptoms. 

Mom is currently being treated for symptoms developed while in ER while tests on presenting symptoms keep coming back negative and the symptoms from her first hospitalization are being re-investigated. The first GI doctor is a jerk.  I call him Dr. Wonderful.  Sarcastic, I know but I will not refrain from saying I was right about him. =p

Somehow Andrew gets Dr. Wonderful (or Dr. No Show) off her case and we get the one her primary care doctor requested. He would make a great patient advocate but he hates hospitals.  

Tomorrow mom will have another colonoscopy.  It's only been 15 days or so since her first one. 

Hmmm... can we skip ahead to February? 2013 awaits me. 

Still around and the mysteries of Pinterest

The end of the year ended with a bang - mom in the hospital with Crohn's Disease. A nasty disease, that one. She is not in remission yet but slowly improving.  Diet seems key.  Her doctor, I do not like. He does not allow you to make appointments and his office has yet to call back for a followup appointment.  My former snobby kidney doctor is the same way.  I do not suffer fools, kindly. Even ones with M.D. after their name.

I told mom those two must be married to each other. Mom swears he is wonderful. I swear he is a jerk. I told mom she would think a dog that bit her was wonderful if the dog brought her a toy afterwards.

He might call, one day.

My sinus infection rages along. Sniff, sniff, cough, cough. I am on my second round of antibiotics. A nice steroid nasal spray has been added to the mix.

Despite the rocky start to the New Year, I told Andrew I had high hopes for a great year!  

*****************************

Pinterest - I'd love to read a sociological viewpoint on why people pin the things they do and why they react the way they do. It seems to be replacing FB, thankfully. 

I like most things people pin, save pins about weddings, wedding rings, wedding cakes, wedding dresses, wedding venues, wedding shoes ~ ad nauseam, they all look the same!

Sometimes you'll see a blurb that let's you know the person is not engaged, but dreaming of her future wedding. 

I never see a man with a Pinboard about his future wedding. Get a clue, women. Harsh, but true.

Too much, too much. Who cares if it is a two-band ring or a three-band ring if you want a ring before you meet Mr. Not So Right.

AND by the way does anyone marry in Sage Green? Or shocking Ruby Red? If so, nobody's pinning those dresses or pants. Yes! Pants!  Imagine the shock!

Most people pin stuff they want for their homes, art they like, meaningful quotes, a mystery to all, really - context is everything when it comes to content. Food to try, (yes I've tried them and yumm...!) and ideas for the yard.  I confess - I have a secret love for looking at tattoo pinboards. Joining a community tattoo pinboard would lead many astray about me but that is okay.

A collective look at my pinboards might give one the impression I am a dark, sick, controversial person who hates weddings. With boards such as Grief, living with grief, Multiple Sclerosis, Controversy, The Anti-Wedding Board and well - sometimes a follower will follow, read pins and unfollow. Or join my pinboard fray much to my shock. And I'll return the favor and join her beautiful pinboards about cute puppies, Kitchen Aid gadgets, gardening and feel we could be best friends in real life without saying a word.

I try hard not to offend but I think I will try less.  Real is more. 

Andrew's earrings

Circuit board earrings

made by Andrew

I love Andrew bling.  I love gifts from the heart and this was made by his hands, for me. 

*******************

After more thought, I decided to change to another type of oral pill. BG-12 sounds safer. My Neuro PA will be frustrated but it is my body. She cannot tell if I am going from RRMS to SRMS because MRI's are contraindicated due to my cochlear implant.  At best it is an educated guess.

I can't tell you how many lesions I have, or where they are. Is it a blessing or a curse? 

My mother is in the hospital. We had to take her to the ER on Friday.  I don't know when she will get out, but blah.  

Tomorrow is New Year's and we're off to a rocky start. I'm putting a halt to that... NOW!

Happy feet and GOODBYE to 2012

My son wanted happy feet for Christmas and Santa delivered many pairs of wild socks.

This was his favorite pair.  

Christmas was sweet, the four of us made sure Andrew was the "child" for Christmas.  The one to dote on.  Fun times!

He made me a pair of earrings out of purple circuit boards!  =)  Stunning!

MS^^^^^^^CRAP 

My Neuro PA wants me on Aubagio, an oral MS pill because I am progressing.  Since I'm on Medicaid it will take a couple of months to get going.  Paperwork, you know.

Paperwork.  

Slightly off topic - funny how Neuro PA's can't fix sinus infections but can prescribe Aubagio.  Medical care has become too compartmentalized for me.  I have a sinus infection and saw my primary care Dr. the next day. Steroids (!!!) and antibiotics, what's two more pill bottles?

Anyone on Aubagio?  Tell me, scare me, or make me laugh.

Took Mom to the hospital last night for observation. No diagnosis. Answers take time. Especially on New Year's Eve weekend.  I am tired.

May the year 2013 be wonderful to all!

It's only a dollar

I'm having a little fun leaving little notes with a dollar enclosed around town - it says "it's only a dollar but it's your dollar".

No idea what's happening with those dollars. I don't have many dollars but it is fun.  

Merry Christmas and Happy New Year!  If you prefer another greeting leave it at the comment box and I'll shout it back to ya!  =)

Connecticut shooting

Some have asked what I thought about the shootings. We share only one thing, the loss of something precious, our child.

There are so many things I could add but the one thing I know for certain is nothing in life prepares you for the loss of a child. 

Nothing in life prepares us for mass tragedies either. 

Instead of assigning blame to this or that on a public forum (I do wish the news media would shut up with any and all theories) I will simply remember the parents and families in my thoughts and prayers. 

Physical Therapy: sometimes you run into your past

Nicole came with me for several physical therapy sessions in 2006. This guy was a hoot - he'd tell me to move those hips! Stop walking like a man!  My daughter would laugh and often grab my hips like he did and rock them back and forth at home.  She said "he is right - move those hips, you walk like Poppa!"

I miss her so much right now. Afterwards I'd get a massage if I was lucky. She was a massage therapist, remember?  We also watched Grey's Anatomy and The Practice. I no longer watch either show.

So, fast forward to now - I'm in PT again. We're busy working with the stairs, the bars, teaching me not to run into people (heh) and there he was.

I wave. He does not recognize me. In 2006 I had long red hair - some of you may recall. =)  When I open my mouth he remembers me - I'm deaf.  =)

I can see he is quite startled at the change in my appearance. No time to talk.

As my therapist and I walked back downstairs I told her I used to be a redhead but now I'm one of the silver ladies. She knew about Nicole.

It is disconcerting to know the last time I saw him for physical therapy Nicole was alive. I don't know if that makes sense to anyone but me.

Worldwide Candle Lighting

Medical Supply Stores: not following the rules

When she brought me the forearm crutches she had two different ones for me to "try out".  Wait - I already tried out crutches, why are we doing this again?  There are no lightweight forearm crutches my Neuro prescribed in stock so she wanted me to try "these". I did and they are too heavy. She was surprised I could tell the difference between 2.5 and 3 pound crutches she had for me to compare.

Bet she could tell if it was around her waistline, that's all I will say.

She said it would take 5-7 business days to get it..as if it was supposed to entice me into taking those. The one I am getting is much lighter and very sturdy.

I wonder why she didn't tell us over the phone she didn't have the ones the Neuro ordered in stock and save us a trip down there. We called first - to make sure my script, insurance, blah-blah was in.

I told her I wanted the ones my Neuro ordered because the heavier ones created balance problems for me at the hospital. AND she's supposed to fill the prescription as written, not offer "choices".  Imagine Walgreens saying we're out of 1 mg klonopin so we'll give you twice as many .50 mgs to make up the difference. It's not allowed - prescriptions must be dispensed as written for a reason.

My therapist spent 30 minutes assessing which forearm crutch I apparently need so let's get it ordered.

I plan on "tattling" to my therapist tomorrow so the next person does not get stuck with the wrong equipment if he/she does not feel like battling the big bad saleslady....some days you simply don't.

My neuro called Alex and requested I come in.  He explained I already had an appt scheduled for the end of December but nooo, I have an appt on Friday. I guess we're to decide if I'm no longer RRMS. I already know the answer.

I'm not, but I don't think it is the most horrible thing in the world.

"I'm calling your Doctor" says my PT...

As we pulled up to the PT Hospital, a woman my age with a cane was struggling to get up off the pavement. Alex jumps out to help her and I hobble out. We got her up and she and I walked in together. She appeared to be in pain.

I asked her if her knees were okay - she said she knew she had injured her knee again and her physical therapist wasn't going to be happy with her. Suddenly, I knew she had MS so I asked her if she had MS like me.  After all we were walking like hobbits only she had a cane (no forearm crutch!) and mine had yet to be ordered.

She was surprised I knew for some reason.  Hmmm.  Walking like me and falling in front of the Rehab Hospital are clues.

We bid each other well, she went her way and I went mine.

As it happened I told the physical therapist about my adventure coming in the door. A note to self: keep mouth shut next time. She immediately asked who it was. I didn't ask her name. Where did she go?  To the left. Was she tall or short?  Uh-oh.

Trouble ahead for this lady, she's getting a forearm crutch like moi. Whoops.

So we sit down and we do our morning assessment.  She tells me she's calling my Neuro. She says I'm having a relapse. Now wait a minute, when did it begin?  I don't even know when the last one ended. We both agree - it's probably Secondary Progressive but shouldn't that be diagnosed?  I said why, what's the point?  She saw my point but she is going to do her JOB and call the Neuro. I wonder if my Neuro will really call me for an appt.

She asks if I'd consider steroids (no) and why (they make me crazy) and she tells me that she has seen some really wild personality changes on steroids.  Uh-huh, that's me. No thanks.

I did ask if there were medications to offset the wackiness steroids cause and she said very slowly....yes....but I am not sure why she said it very s.l.o.w.l.y, does anyone know?

The heavy forearm crutch turns out to be too heavy for me - my right arm does not have the strength to move it forward. I could say yay, I get to order the lightweight forearm crutch except lack of strength is never a good thing.

The lightweight forearm crutch is ordered and is being delivered tomorrow if the prescription, approval, etc go through today.

Another day living with MS.

Some of us have our own Halloween costume!

She much cuter than I would be in the same outfit.

I hate this one.

For some reason the little girl makes me laugh but the "homeless boy" irritates me.  I think it's because one is a choice, the other not. 

But what do YOU think?

Update:  As Karen pointed out in a comment, which one is a choice?  Answer:  NEITHER!  I apologize as I am having an MS moment as they say... (or maybe it's called denial) 

Happy Thanksgiving!

 

Happy turkey day!

My forearm crutch is not going to match my hair

My MS has been moving along at a rather rapid clip lately.  Like anyone with MS, cancer, addictions, you hope for a halt.

I started PT at Health South Rehab Hospital last week with an MS Specialist. She is fabulous at telling me things I do not want to hear. She is very good at her job.

The first thing she taught me to do was an "oculomotor smooth pursuit" eye exercise.  I move my eyes back and forth between my two fingers some distance apart two different ways.  Every time I do them my right eye (the one damaged by optic neuritis) starts twitching madly. It is a simple exercise made difficult because of MS.

I have a "scanning" problem, balance issues, foot dropsy, bladder boo-hoo's, electrical short-outs but PT cures everything.  Right?

She tells me I need a walker for certain situations. Like, when my leg disappears for 3-4 days.

I remember my Dad and grandmother, both using walkers and wheelchairs - traffic jam in the hallway!  

Did someone say the word walker to me???  I pretended I didn't hear.
Then she smiled and said "you need a forearm crutch.  Here's two to try."

Whoa. I came for PT, not a wardrobe of DME's.

We went outside with the crutch, we went up ramps, we went up and down stairs, went into "crowds" (I have to learn not to hit people with the crutch) and I will not admit this but I do walk better with the forearm crutch.  She did say "it's one of those things you can use at will".

There were two choices, a lightweight one and a heavyweight one. I preferred the lightweight but of course Medicaid does not pay for the lightweight neon pink/green one I was practicing on. She warned me mine would be ugly gun-metal grey unless I bought mine outright.

My forearm crutch is not going to match my grey hair. One is a choice, the other not. So, an impasse.

I am getting used to hearing "it's not covered by Medicaid".

Next week we will discuss this forearm crutch problem.  Again.

Something different

Amazing interpreter!  Click to view - Sorry, but you'll have to get through the annoying ad in the beginning... but she is my favorite type of interpreter.

She signs windy so well, you can see the wind in sign language without knowing sign language. Go watch. =)

Happy Birthday to Nicole

Forever 34

She would have been 38 today

Allergic to ORANGE and...

AND...

Happy Birthday Daddy!

I miss you and Nicole, especially,

Drop...sy

I handed my Neuro PA my my long list of problems I had for her.

"I could hear your foot all the way down the hall" she said.  She looked over my list and smiled. She always smiles. I do like her.

I forgot to tell her about almost falling out the shower, only so much one can say.

I have foot dropsy.  She wants me to have PT at the Rehab Hospital with someone who knows something about MS.  She mentions a possible need for a foot brace and "usually it doesn't improve".  Well, neither does MS.

Wonder if I'll get to wear my dream shoes one day. I guess not.

The prescription pad comes out  - more baclofen for the calf spasms - plus a middle of the night shooter when I wake up unexpectedly. Hmmm...that will work except it impairs my ability to drive.

What do you do if your medications help but impair your ability to drive?  Suggestions?

Don't take a Romberg test in the shower

What to say when you have nothing to say and everything to say at the same time? I'll start off with everything!

My MS is progressing but at least I am not saying "My cancer has returned".  Yes, I'm a melanoma survivor and it made Copaxone injections impossible in the lower half of my arm because I have no fat in that area. It is flat like Kansas only covered with skin.

There are times I don't mind MS moving along because so much is going on at home. Alex is job-hunting in a dismal climate, the daschie seems to be developing some kind of problem but I don't know what - there is no money for vet bills.  And there's this:

Nicole's 38th birthday is coming up - November 7th except she is still 34.  A hard day to celebrate. The Worldwide Candlelight Memorial is in December. So are all the holidays, including my birthday and she won't be there for it. It is a struggle, this... conversion of happy memories of Nicole to something more compartmentalized. I can't cry all day, you know. When I am strong I open the happy box of memories, otherwise they need a safe place to hide. For now. I need to focus on the home front and get through the "oh so happy season..."

 MS:  my left leg tends to vanish (usually when I need it which is all the time) and the power to shock and awe has returned. (electrocution) I need a forearm crutch I think. Saying "I think" probably means yes. I want a very sleek white one. Does one exist or are they all clunky and grey?  I probably couldn't afford the sleek ones anyway.  Back to MS...

Electric shocks surge through my abdomen and travel down my leg. Electrocutions are torture whether done biologically or mechanically. A daily event, now. Not the same as a thunderbolt... my first one was in San Antonio and it was directly from hell.

Electric shocks and thunderbolts are different. I can't explain but if you've had both, you'll know.  I would rather deal major MS electrocutions than endure a second thunderbolt even though it last a split second.  I was asleep when it happened and it took me a long time to feel normal. I did wonder if I was struck by dry lightening!

My Neuro at that time believed me.  It's important when a Neuro believes you.

My kidneys are being contentious - an old symptom returns to visit for a few hours at a time...approximately 28 years ago I was diagnosed with diabetics insipidus but before I could get pick up my vasopressin, it went away very mysteriously. I had it for three long months...now it seems to visit for a few hours at a time. Intense thirst followed by an inability to retain the water drank while showing signs of dehydration....for several hours.

My neurologist will be intrigued.... wah, wah, can I make a case for wanting a water retaining medication? One that increases blood pressure too? That doesn't cause renal damage?

A word to the wise, if you have MS never take the Romberg test in the shower.  I had a minor fender bender - I  was washing my hair, closed my eyes and boom, bam, I sort of fell out of the shower without my knowledge... the corner of the shower prevented me from injuring myself while the door swung wide open. My first EPIC FAIL of the Romberg test.

Remember I broke my toe last Thanksgiving twice?  It seems to have injured my entire leg- it throbs constantly. My little piggy toe should be singing wee wee wee all the way home... it has not arrived home yet. Time to get it checked out. Again.

I could go on and on...but I'm tired too. =p

Did you see my son for a split second on ...

the lower left corner on MSNBC this afternoon?  His face, all mushed up by other people. Move, please. =)

But this made up for it.

My son with Gov.Hickenlooper

this morning or last night, I can't keep up...

A very good picture of him. My son, that is. =p

Not to brag...but

I was told by Healthline Editors that I had made their list of favorite MS blog list. And for readers to come by and cheer me on.

Yes, cheer me on!

Take a look at the other winners who are posted in no particular order as well. Go by and congratulate them too.  http://www.healthline.com/health-slideshow/best-multiple-sclerosis-blogs

There are MS apps for your phone you can try.

http://www.healthline.com/health-slideshow/top-iphone-android-multiple-sclerosis-apps

A side note: I had forgotten my ipod was loaded down with Nicole's playlist. My nose is sore from kleenex and tears-  Nicole's favorite song, Tom Petty's "Learning to Fly" came on and well the good ol' days may not return and the rocks might melt and the sea may burn.

Flushing toilets don't roar down the pipes

the water swooshes out of sight. I learned when I flushed for the first time after getting ClearVoice for my cochlear implant. OOO, cool!  Our toilets are quiet! And voices are crispy clear without competing with the noise of the ceiling fan!

The world is both quieter and louder at the same time. 

On the way home the car's engine was very quiet. Normally I struggle to hear voices over the engine and road noises but this time, it was quiet in the car. At first I thought something was wrong - but then I realized I could hear the road/car noises if I wanted to.

Background noise had become background noise for the first time in my life.

I am emphasizing that because being tormented by background noise is torture. I have refused to go to certain restaurants because of background noise. Telling me to turn off my equipment doesn't work because then I couldn't understand you and even if you knew sign (most people don't) I am almost paranoid without a hearing aid or cochlear implant in public. Which is why I don't do water parks or public swimming pools. I inquired about Neptune, a waterproof processor but noooooo, Medicaid doesn't want us to hear while wet unless we are children. I asked about getting my second ear implanted and she said no Medicaid only implants children. OOPS.

Our government doesn't want us old folk to hear but some of us are reverting back to our childlike ways...heh.

My hearing aid wasn't broken after all - it needed re-programming to fit the cochlear implant sound.  (less bass, less treble)

Bliss.

I am listening to my iPod as I type this - a stunning difference!  Right now The Monkees are playing. I found a note I wrote to my grandmother when I was a kid. Or rather, a poem. I praised the Monkees and bashed the Beatles! I remember thinking Davy Jones was the bomb and the Beatles were pests. Who names a group the BEATLES?

Things changed later but - even now I prefer the Monkees ...hold habits die hard. Or perhaps I hear them better because their songs were more simple.

It took 57 years to say I really love hearing like this.

A clock story from the past and one from yesterday perhaps best illustrates my point:

A clock would tick-tock at the Paper Garden where I worked with mom. It was so loud to me I would move it clear to the other end of the store much to mom's annoyance. She said "Sherry it is NOT loud."  This scene repeated itself everyday for years. "Yes mom, it is LOUD".  It probably wasn't but my cochlear implant made it loud....

Yesterday out of the blue Alex said "Do you hear the clock ticking" and I said "No I don't and I don't want to" and he laughed. A few minutes later I heard the clock ticking but it was so faint, I had to really listen to hear it. That is how you're supposed to hear a clock!!!

Woot!

iDuped

When my andriod phone broke (an Epic) several weeks ago I switched over to the dark side.  I shall say this: they lied. It is not intuitive but it is cool. And it has far more choices in phone cases than android phones do.

Haven't you noticed?  An android phone gets maybe a choice of 4 neon colors (on the bottom rack) and the kiosk salesman has to hunt for them every single time.

Back to my IDuped tale of woe. I always read the fine print. I even read TOS when I sign (or decide not to) sign up with whatever.  Unlike most people I can't buy my phone at a Sprint Store. I have to buy it at the SprintRelayStore.com which deaf people can buy their data only phones. A pain in the arse. I see their point - they want to make sure you are deaf.

When I got the bill it was $10 a month more than my andriod bill. And no, I didn't know it was going to cost me $120 more a year. Somehow I missed reading that fine print. They pointed it out to me, today.

That's a pair of fancy daschie shoes a year, peeps!

In the mourning, I'll rise

I saw this on Pinterest where I spend my time quieting my mind. For some reason I can't quite shake this "pin" off.

If I were the tattooing type I'd get this inked on. No ink for me but some of the white tattoos are awesome. Andrew says the white ones are ugly. We have a fundamental difference in color types. Oh-kay...

The funny thing about this pin is I do not understand it but I do.

What do you think it means?

Blood Pressure: I need an increase

I have a tendency towards low blood pressure for whatever reason. 

It isn't easy to fix.  You'd think "adding salt" via a salt tablet would help. My doctor asked me to stop because of my kidneys showing high chloride levels. Ohhhh-kay.... so I stopped. 

The other night I had a massive headache, was slurring my words, stumbling around, trying to get in bed. Alex decided to take my blood pressure. It was 70/40.  I was asleep before he could say a word.

The next morning he told me I had to take a salt tablet or go to the Doctor. I took a salt tablet, neener-neener because the Doctor sees me too many times anyway.

All the doctor tells me to do is "drink more water" and if I hear that one more time I am going to.....

SCREAM!

I drink gallons of water every damn day. More than you, you and you. I pee every ten minutes. I can't possibly drink more!

Damn kidneys. Damn blood pressure. Love salt. Hate chloride levels. Anyone have answers?

I'm getting ClearVoice!

Read all about ClearVoice here.

But first, a double whammy. My implant sounds like a garbled motorcycle which means I needed re-programming. I googled and found out ClearVoice was now out!  My audie was giddy when she told me it was available now. I cannot wait!  Read the description to find out why. I hate background noise. I don't want to hear it. Now I won't!

I have two ears though.

My other ear uses a hearing aid. And old one too. And it is failing...

I cannot afford to buy one right now. They're around $2400 or so because I'm really deaf. None of those tiny invisible "hide in the ear" thingies will do!  I think I bought mine in 2000.  I am hoping I can get it reconditioned hahaha. HAHA. Ha.

The funny thing about Medicare/Medicaid is they will pay for a cochlear implant $75K (or more?) but they won't buy you a hearing aid.

Who am I

I met a stranger downtown not long ago and this situation came up.

My life is not so simple anymore. I have MS. I am "retired". One of my children died from alcoholism.  I am deaf. I could go on.

Who am I?  I have no idea.

Who are you?

The need for escape

Going up in the hot air balloon with Andrew was cathartic but I did have to come back to earth. If left up to me, I'd still be up there. Or on a mini-vacation somewhere.

I want to zipline and bungee jump. And travel here or there. Say hello to peeps near and far. Little trips, not big ones. Couchsurfing USA, anyone?  That's free but not airplanes.

Since life is not going the way I want it to, I want to be a Gypsy.

Hot air ballooning: the art of avoiding assault rifles

Don't think we weren't worried about developing a fear of heights - we were!  

Balloon riding is ... quiet. You have no sensation of movement unless you come in for a bumpy landing.  The balloon moves with the wind so there is no air movement when you're up there.  Ascent is gentle - unless you're paying attention you're up and away before you even know you're on the way up. I couldn't feel it ascend or lift.

A strange feeling, for sure.

Our balloon was the biggest one in the crowd. Yes...the biggest. We launched a bit away from the others because of its size.

 

We're taking off!

note how far away our launch site is from the other balloons

Traffic jam!

Something interesting to know - our balloon could only go to approximately 12,000 feet (I know...so high?) before we'd run out of oxygen. Since Colorado Springs is 6500 above sea level we only had 3,000 feet of play room. Who knew?

We didn't want to land at the Air Force Academy, Ft. Carson, Peterson or Schriever AFB (or rather, the pilot didn't) because we'd be greeted with armed assault rifles and threatened with arrest if we got out of the basket.  A momentary thought - what if we land there and I can't pee for hours due to assault rifles? 

We landed in a field of prickly yucca instead.  Gently. Not even my bladder bumped.

Seriously, my jaw hurts from smiling too much. 

I am so lucky to have Andrew and Alex for without them, I'd be adrift. 

Andrew, thank you for a wonderful gift I'll never forget.

Balloonist Prayer

"The winds have welcomed you with softness.

The sun has blessed you with his warm hands.

You have flown so high and so well,

That the gods have joined you in your laughter

and set you back again into the

loving arms of Mother Earth."

Flying high: part two

In the air

Birds fly too!!!

DIPPING!

Hello down there

We are IN this thing... (can you see us waving?)

Evergreen Cemetery

Away we go: part one

Time to go!

Inside our balloon

Over Prospect Lake

Landing!

Hanging on!

Friendly skies

Getting IN the balloon (HA!)

Up in the air

a perfect morning

inflating our balloon

Cheers!

About to dip

Smiling

Crowded skies!

Awww, we had to come down

More pictures coming...