Don't apologize

Life sucks and then you die!  Have you heard this lovely adage before?  I'm sure you have.  Life does suck at times.  Our life sucks at times but most of the time, despite what I write here, our life is okay.   We do a lot of course correcting to find 'normal' again or at least some kind of normal that feels do-able but we always find it and life takes on a new rhythm.

Sometimes, I wonder, if you could put our life to music what would the symphony sound like?  Would it be a chorus of angry, sharp tones or a melodic flow of lovely chords and arpeggios? Would I like what I hear?

Life with Shwachman Diamond Syndrome is not fun and Mitochondrial disease makes it even less fun but the truth is, we aren't dead yet.  We are still living life.  We still have lots to live for and until everyone has fulfilled the measure of their design, no one is going anywhere.  So, don't apologize.

Don't apologize for the difficulties you read about here, it's just part of the song.  Don't apologize when I ask how your son's broken leg is mending or your daughters 3rd round of antibiotics for another ear infection and pretend it's no big deal,especially when you compare it to my life. It is a big deal!

We are all dealing with big deals and no matter how they come packaged, they are all big deals and we are all learning the same lessons aren't we?  Aren't we all learning to trust in God; to trust that he has a plan for us and that if we can stop and be patient, things will work out?

It's hard having a life of huge problems.  It's makes people stop talking to you, associating with you because how could anything they are dealing with have any resemblance to mine?  Well, it does.  Trials come in all shapes and sizes and no trial is easy or fun.  I know that.  I feel bad when people tell me about their difficulties then say, "Well, I know I have no room to complain."  I say complain away!  We are all in this together and believe me, we don't have it all that bad, it's all we've ever known.  It's not like this was thrust upon us after enjoying a totally normal, healthy, problem free existence.

I look at some close friends I have who are dealing with cancer; husbands with cancer, mothers with cancer, sisters with cancer, children with cancer, children with autism and a million other things and I count my blessings. So, don't ever feel like you have to apologize that your trials look different from mine.

Dumb Transfusion

What a day we had on Wednesday!

Crappy, dumb transfusion day.

I hated every single minute of Wednesday...there, I said it.

I haven't been so angry, so resentful, so...EVERYTHING as I was Wednesday.

Things started out okay, the IV went in the very first time! That hasn't happened in almost forever.  One stick.  They started the transfusion out at 10ml/hour which is snail pace slow.  Her pre-meds were fine, nothing out of the ordinary with that so we were expecting smooth sailing.

About an hour into it, she began having reactions.  She was overcome with excruciating pain in every single one of her joints.  She described the pain like when you have a raging fever and your whole body aches, even your skin only 10 times worse.  She just laid there shaking, then the migraine started and then the breathing problems.  The nurse came in to check her vitals and she had a low grade fever and her blood pressure had tanked.  It was 88/44.  That's pretty low.  Her heart rate was pretty high and that is not a great combination.

These are crappy pictures because it was so dark...88/44, I have never seen it that low, at least until it dropped again to 81/41!

They totally shut down the transfusion and hung a bag of fluids and pushed an entire liter through in just a few minutes hoping to flush the plasma through faster.  That didn't work so they gave her an injection of solumedrol, a steroid, and Zofran for the nausea.  This brought her some relief and after an hour or so, they started the plasma back up, really slow...again.  By 4pm she still hadn't finished the first bottle, she still had two more to go!

The nurse's leave short stay therapy at 6pm so we were given the option to be moved out to the main floor of the hospital in a regular room or come back Thursday and finish up.  NO way was I coming back, we were already miserable there was no sense spreading that over two days.

We moved into a regular room and she continued to have small reactions, lots of pain, headaches and blood pressure spikes and drops.  When we left the hospital at 9:45, her blood pressure was 81/41!  In my mind, I was thinking, should they really be letting her go with a blood pressure so low?  Oh well...they did.

Before we left, I lobbied for anything they could give her to squelch the bad headache already starting.  I do not want to make an ER visit this weekend with Meningitis.  They loaded her up with Toradol and sent us on our way.

So far, things are stable but its usually day two when things get hairy...today is day 2!  Crossing my fingers things go okay.  I have to drive up to the valley for a doctor's appointment for myself so that will mean I'll be gone for about 4 hours.   C'est la Vie!

To Biopsy or Not...that is the question...

I can't believe we are already at the 6 month mark of the kids' last bone marrow biopsy!  The boys' biopsies came back all wonky and they really wanted them to have another one just 6 months out to see if the problems have resolved.  Here we are at 6 months!  Ugh...

I am not going to have Spencer recheck his marrow.  I know he doesn't care.  He just wants to live his life and trying to co ordinate all that in Denver is a daunting task.  For the most part, he is hanging in there aside from his usual fatigue and daily nausea.  I guess what I am saying is that his symptoms haven't gotten worse so that is good.

Sam is another story.  Getting the biopsy done would be easy enough but he seems like he is doing okay, relatively speaking.  The mouth sores might indicate some changes happening but there are no glaring issues.  I have to decide what to do.  I'm not too excited to put him under again and stress his body with another biopsy but I also don't want to miss anything either.

I don't love these forks in the road we come upon so often.  I guess it's off to the Oncologists' we go and plan our next move!

Infusion Day

It seems like forever since Shelbie had an IVIG treatment.  We did miss last month because the H Pylori was so bad!  We didn't dare add IVIG to her already struggling body.  So, here we are at the start of one very long day!

I can honestly say I haven't missed this place...at all!  It was so nice having a little break though I'm sure Shelbie is anxious to feel decent for a change.  She leaves next week for a two week vacation with her grandparents so we need to get her in tip top shape to enjoy a little time on the warm beaches of Mexico!  H Pylori is still a problem and we still don't have a resolve.

In other news, Sam continues to be plagued by nausea daily and always after he eats.  He handles it much like Spencer does and just tries to pretend everything is fine.  Occasionally, he will flop down on the sofa and hardly move. He's had some mouth sores pop up the past couple of weeks and that almost always means he is neutropenic ( a drop in his white cells).  Other than these minor disturbances, he is fine.  

It's funny to consider how much I have evolved in terms of reacting to problems that come up.  Lately, I don't react at all. There was a day when I was running them to the doctor every week!  I went from that to putting it off with the 'wait and see' approach as much as I could.  Now, I just blatantly ignore the symptoms and obvious progression.  I think I am in this weird place because our doctors seem to be tired of the chronic problems.  I take them in and all we get his a head nod and shrug of the shoulders and a bland statement that there is really nothing they can do about it.  So, if they can't do anything about it...why try to steer the river?

This technique works out fine until I wake up to the reality of things and then it's all just angst and worry and a little bit of regret, resentment and even anger.  One thing that's for sure is that I am tired; bone tired of life and chronic illness.  You might even say that all this change is nothing more than apathy and apathy is not good.

Life goes on

We have been one entire week without anyone getting damaged in any way!  Whew!  Sometimes it's the little things we need to appreciate.  Of course, we still have the old injuries we are nursing but we are mending.

Sam still has some bruising on his face but it's fading.  He has had a particularly hard weekend feeling sick though.  I'm not too sure what is going on with that.  He worked really hard for me on Friday and Saturday and over exerted himself and spent the nights really nauseated and weak.  He is sort of acting the way Spencer does when he spends a day playing hard on the ski hill.  Their bodies become so drained, it takes a day or two to rebuild.  I guess that can be attributed to the mitochondrial problems.

I have heard parents say it before but I am seeing it now firsthand.  With Shwachman Diamond Syndrome, it seems that kids go through cycles of health.  From birth to about age 8 or 9, they are pretty sick most of the time.  Then you get this most wonderful short lived period of time when not much happens. That lasts until about age 15 or so and then it's nothing but problems again.  It seems that Sam has been enjoying some pretty decent health but now we are on the downhill slide for a bit.  We'll see, it may be too soon to say.

Shelbie has been off her meds now for nearly two weeks so this week marks the second round of testing for H-Pylori.  She still has the symptoms of the disease but it could be the bacteria is gone but the damage has been done, then I don't know what happens.

My ankle is still tied up in a walking boot.  It is still pretty sore but my range of motion is returning and there is less pain when I bend it.  Maybe another week or two in the boot.  It's been 6 weeks since all the problems started.  At therapy, he does something called AStym.   The website makes it sound like it is such a relaxing therapy but trust me, there is nothing relaxing about it.  It makes me want to cry, literally.  It takes everything I have to sit still and at that, I usually have my hands clinched behind my neck and try to keep the moaning and groaning and flinching to a minimum.  After that ordeal, I have to have the Iontophoresis therapy and again, it is so painful, especially after the Astym when my tendons and ligaments feel raw.  That feels like a million needles piercing my skin for about 10-15 minutes.
By the time I leave my hour and 10 minute session, I am worn out and on the verge of tears.  Bleh....

Well, life goes on and we are hanging in there.  Still no decision on our health insurance.  I guess I am waiting around to see what happens with the government shut down.

Prayer changes things

A week or two ago, I made a prayer request for some dear friends all battling cancer and auto immune liver failure!  I thought you might want to know how things are going for a few of these people I have been able to connect with.

Damen, the young man awaiting a liver transplant, is very, very sick but his infection has cleared up and he is getting a little stronger and a little more nourished.  He has to get stronger before they will dare operate on him so that is the goal.  He has a long rocky road ahead but the infection clearing up is huge.

I visited with my friend J who has pancreatic cancer.  I shared with her what I did on my blog.  She said, "Without a doubt, I feel those prayers!  Please ask them to keep praying!"  Her tumor is shrinking, by a lot, and there is a chance they will be able to operate and remove part of her pancreas.  She is also being considered for some treatment trials and has a hopeful attitude that things are looking up!  Isn't that amazing?
My other friend B, who also has pancreatic cancer is hanging in there.  She is holding her own but weak.  She too has a good attitude and that is really half the battle.

My friend D, has started chemo back up with some new agents that will slow down the aggressiveness of the cancer growth.  They know it won't cure him but it will stretch out his time left and his quality of life.  Continued prayers will really help!

Those are the only updates I have but thank you...Prayer really does change things.

The Nose

This is what your nose looks like when your knee makes contact with it while doing a 'Peanut Roll' on the trampoline.

Don't ask what a Peanut Roll is, I'm pretty sure since Sam can do it, it has something to do with great heights and some sort of backwards contortions, Roll being the key word here.   Just for the record, he is not a happy camper.  I guess you can tell that from this picture.  He's actually pretty ticked.

I took him to the doctor on Friday and there isn't much they can do.  They offered to do an x-ray so we would know for sure if it is broken but if it is, they can't really do anything anyways.  There is a bit of a bend in the nasal bone so chances are good it's broken but who knows.  It is so incredibly swollen, they couldn't even see inside.  The swelling has spread to his eyes and by the evening, the right side of his face was turning black with bruising.  

Poor kid.  I feel so bad for him.  He really has had a crummy week. First the toenail removal, now this.  

Wow!

The whole insurance thing sucks!  Do you know what sucks more than the actual problem?  The fact that people have to make it about politics.  I realize it all stems from politics but let's face it, it is what it is.  I don't care if it's a democrat or a republican that made the mess, I care that I am the one having to try to make it work and it's frustrating and seriously feels a little hopeless.

People can rant and rave all they want about how great it is and I believe if my situation was different, it would be great.  People say, "Well, just keep your existing policy."  It's not that easy.

They won't let me keep my policy.  Once it comes up for renewal, it doesn't meet President Obama's requirements anyways, and I will have to move to the exchange.  Furthermore, if I don't move to the exchange, I will be hit with penalties and taxes.  I can't believe that my policy isn't adequate.  I am in a high risk pool.  I have detailed coverage.  Some wimpy plan isn't going to cover months on end of chemotherapy agents, blood transfusions, plasma!  It's really hard to feel backed into a corner when you try so hard to make an honest living.  It would be easy to just give up, stay home and collect on food stamps, and any other hand out the government so generously offers and then I would be like many who are so happy to be taken care of by Uncle Sam.

Well, that's not me.  I want to be independent and keep my agency.  So, I'm done with this rant I hope. I really don't like feeling exasperated over things beyond my control.  I am tired of life as it is and this doesn't help, so I have to let it go.  But, one last thing...just let this sink in...Healthcare costs for me, not counting any vision, dental or costs denied is over $20,000 a year.  Add to that the other necessities; a mortgage, taxes, insurance...I need to make a minimum of $30,000 a year and that's if we don't drive a car, eat food or buy clothes.  We can't entertain ourselves...just sit in our little boxed in life because there is no money for anything else.   So, next time you are tempted to tell me how great a $15 an hour job is...think about how stupid and ridiculous that sounds to me.

A matter of time- Obamacare-Long and rambling

Three days into October and I was lulled into this peaceful state that we might just escape the whole Affordable Care Act...Obamacare debacle.  Like a tornado from nowhere, it touched down tonight.  Completely unexpected.  I admit, I should have been educating myself all along so that I was not so ignorant.  I assumed that as long as I had a policy in place, we would not be hassled.  I was wrong.

I have just given myself a crash course in the Affordable Care Act.  Here is where I will add a disclaimer or two...For some, who have had pre-existing conditions and live in a State that doesn't insure people in such a situation, the ACA is a good thing.  Secondly, this is not going to be a blog post that will educate you on facts, it's going to be emotional and my opinion and how I feel about all these changes. There is no shortage of places you can go to read the facts and decide for yourself.  So, this is my story, my experience, my words and my feelings.  It's not about being a Democrat or Republican.  It's about trying to do the right thing, work hard and take care of my family.

There are three things in life that make me want to chew my arms off faster than anything...
Politics/Education
Healthcare
Finances

You can imagine my level of frustration when all three of these things came so neatly wrapped up in one single call from my insurance company!

The new girl reported that my policy is undergoing changes due to the ACA and as of November, my rates will go up but I can save money by joining one of the Healthcare Exchanges.  She was very nice but sadly, I was not.  For one thing, I just renewed my policy in June, it shouldn't be up for renewal again.  Furthermore, I am not too excited about starting over and having to meet another deductible for the year.  That just isn't fair!  She seemed slightly confused and was really not helpful except for the part that rang loudly in my ears, my premium is increasing!

Regardless of the Healthcare exchanges Obama is underhandedly trying to railroad everyone into, I can not afford increased healthcare premiums.   Here is how it all breaks down...

I currently have 12 jobs.  12 part time jobs.  Some pay better than others but I barely make ends meet.  In fact, over the past 5 years of unemployment and underemployment, there have been months when I have had to pay for essential bills with a credit card.  Needless to say, my credit cards are higher than I am comfortable with but that's life.

I have been paying for private insurance for the past 9 years!  Even when I was employed full time, I graciously declined the insurance benefits.  You see, it's not popular to have children with a debilitating genetic disease.  It kind of screws up everyone's insurance at the office.  It comes down to having a job and letting them off the hook to pay insurance or not getting a job when they find out what a high risk we are to insure.  I would rather be employed than not, so it's a game I have played.

Private insurance costs me $700 a month.  I have a deductible and co insurance of $12,000 and I don't get to bask in the 80/20 that most do.  I get the 60/40 plan.  Then, there are the dental bills, the vision bills and the things that insurance doesn't cover.  You do the math...It's well over $20,000 a year.  Now, I am being told that unless I join the government plan...I am going to be paying a substantially higher amount than I am now just to keep what I have.  It is sad that having the security of health insurance costs more than putting a roof over your head, at least in my case.  Health insurance is more than my mortgage!

This is wrong on so many levels.  I wouldn't even care really if we were just some regular family with the odd trip the doctor for an ear infection or broken bone even, but we aren't.  I finally got to a plan that actually pays for most of what we need.  They have only declined a few things.  Granted the prices sucks but at least I know that my kids will get the care they need with very few hassles.  Changing at this point is overwhelming but Obama will have his way eventually as he finds way to legislate away our freedom to choose and force us to his way.

After I calmed down some, I went to the ACA website to look at what my options were for my state and our health situation.  After all, maybe it work out if I just opened my mind and considered the change.   There are a few new insurance companies I have never heard of.  I read that they were brought to the 'marketplace' to challenge the bigger companies and create competition for pricing.  Their policies were not as good as Regence Blue Shield or Blue Cross and our providers are not a part of their network yet which would mean changing doctors!  Not going to happen!

I found a Regence plan that had most of what we need, not a lot of extras we don't need and it would have made President Obama giddy like a school girl that I had jumped on board.  Ah...but here's the kicker!  The plan was $50 cheaper but the out of pocket deductible and co insurance was $4000 more.  MORE!!

So, basically, I am screwed.  I have no idea what is going to happen.  There is no possible way I can work any harder than I already am.  My kids are getting frustrated with me because I work all the time!  All because I want my agency.  I don't want to be a hand out.  I don't want to give my freedom to the government and live on entitlement programs.  We are living bare bones, few extras, no savings and high debt.

All this is completely overwhelming to me.

On a side note...to round out the perfect day...Sam has injured his nose- black eye, swelling, the whole works.  I'm afraid it's fractured but I am waiting for all the swelling to go down before I take him in.  Shelbie has petechiae... Sad days!

Goff...party of three?

Well, we all fell apart today!  

Three of us, at the doctor!  After 3 days of serious pain, numbness in my left arm and shoulder, I decided to drag myself to the doctor and beg for some relief...oh, did I mention that dang achilles tendon?  Still hurting.

Shelbie...still sick.  Nausea, acid to her eyeballs and other unmentionables.  Despite the fact she feels so lousy, she is still working...what a champ.

Sam reminded me yesterday that his cellulitis toe is still dank and disgusting. So, what better day than the first day of October to get on top of things?

Here we are, waiting for the poor doctor who has to deal with the likes of us.  He drew some blood on me to check some mineral and vitamin levels.  He addressed my swollen and red joints and wonders if my auto immune disease has progressed to something additional to my Ankylosing Spondylitis.  It is so weird that my joints are dying off one by one and there is no end in sight.  I finally, begrudgingly, consented to a steroid shot to see if we can get things calmed down.  Bleh...I hate steroid shots!  I had him address my foot too and he agreed that the best way to deal with the Achilles tendon issue and tarsal tunnel is to keep it immobilized for at least 4 more weeks!  I hate this AND if one more person tells me it's my fault since I don't stay off my foot, I'm going to kick them in the throat with it!  Unless they would like to take over paying all my bills, I suggest they keep their suggestions to themselves.  This is frustrating enough without the peanut gallery.

Poor Sam!  He had to have his toenail removed and it was a painful procedure despite all the numbing meds!  He was super brave though.  At one point, he said, "Mom, just so you know, this is all your fault!"  It's true, I sort of forgot about the toe because he stopped complaining about it.  But either way, the toenail had to come off.  It looked horrific!  A huge raw,gaping slab of flesh.  The doctor said to prepare for 3 days of throbbing pain!  I wish it didn't have to be like this but alas...such is life.  He informed me that I owe him a year of Ironport drinks.  I guess I got off easy this time!

Shelbie has to have some more testing, possibly a scope to find out what is going on and if the bacteria is dead or if we have secondary issues like a bleeding ulcer.   There's always a catch with her right?  She has to be off her antacid medication for two weeks before they can do the testing or they will end up with a false negative!  Here we go again!!  Sunday was plenty miserable for her even with the meds for acid.  I ended up going to two stores after church to find some natural foods, herbs and over the counter things to help calm her poor little stomach down and give her some relief.