Tag Archives: medical

You had to be a big shot, didn’t cha?

21 Oct

 

Voila. The big shot.
Ok, it’s not *that* big. Actually, the needle itself seems only a little longer and thicker than my old insulin syringes, but with Cimzia it is much more volume and the solution is much thicker..

I started Cimzia last Saturday and so far I have nothing to report, though I have been asleep for most of the past 48 hours, I have stubborn headache, and my appetite is ravenous and then non-existent, which is a change for me as my appetite has been mostly non-existent for a few years now.

I’m in the loading/onboarding phase of this medication and hopefully will start seeing results in the next couple of weeks. Fingers metaphorically crossed and hopefully they will be literally crossable when this stuff kicks in and works it’s magic.

The syringes are pretty cool. I know that probably sounds a little freakish, but I have a thing for good design, and OXO Good Grips teamed up with the Cimzia people to design a syringe so not only could patients administer the meds at home, but as most of the patients that use Cimzia have RA which often results in limited dexterity and hand strength, syringe design is one of those things that should have been important to other manufacturers, but it seems that the Cimzia peeps were the first to run with it.  AND I’m all about looking at the bright side of things we can’t just ignore- so boohoo I have to take yet another freaking needle, but yay! it totally makes my inner design geek squeal with delight.

And they just plain look cool. They are definitely easier to use and I am glad I had my doc request self-administration with my pre-qualification for this medication. I just can’t see traveling 30+ minutes each way, to the cancer center, to pay a copay and have the nurse inject this stuff. I have 17 years of needle experience under my belt, thanks to diabetes, so another subQ shot is no biggie for me (though if it was IM I would have the baldguy do it for me, or I’d suck it up and get a ride to the cancer center which is just something I do not need in my day when I have less than even low energy).

I was nervous about adding on a biologic/anti-TNF med as I had such a lousy experience when the last new med we added onto the methotrexate almost did me in (Plaquenil, due to G6PD deficiency), but after a brief 3 weeks off RA meds and a rapid return of the more painful symptoms, I knew that this was the next logical step as far as regaining some quality of life. I do know there are risks involved with all of this, but RA is not “wear and tear” arthritis, it’s systemic and it does have, at least for me, a larger impact than just some achy joints or not being able to go running. If it was just an issue of discomfort, I’d suck it up. I have a high tolerance for pain and I have lived with major osteoarthritis damage in my spine since I was 19. But RA destroyed the mobility in my hips. They don’t hurt anymore, but I can’t move them much either, then again the loss of mobility/range of motion is easier to accept than the idea of putting myself through two more major surgeries at this point in my life. RA messed up my vision due to inflammation and made breathing without discomfort a serious challenge over the past year due to inflammation in my ribs. I quit smoking almost 4 years ago and oh the irony that something else would screw up my breathing, right? Doesn’t matter, I’m glad that I did quit because all of the toxic substances in a pack of smokes would make things worse now and for the future. And I smell so much nicer, so I get more of the sweet snuggles from my kiddo, which keeps my spirits up.

Anyway, enough of my babble for tonight… I’ve got to go catch up on some sleep as I have been awake for a whole 5 hours. Joking. I am happy to be awake, but I don’t want to overdo it or I’ll knock out for the whole weekend. I’m learning, slowly but surely, to pace myself.

xo
Bek

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Genes aren’t always comfortable.

3 Oct

It’s a fact of life:  genetics play a large role in some of the events in our lives.  If you are lucky, you never notice any of the blips or omissions.

Well, I am not so lucky.  G6PD deficiency is an x-linked genetic disorder. What does that mean?  Well, it means that most likely both of my biological parents have the gene, as for a female offspring to exhibit the trait she usually needs defective information from both maternal and paternal sources.   Boys only get the one “X” from their mamas, so if the Mama in question has G6PD deficiency, that means her sons will have G6PD deficiency as well.  (click here for a handy inheritance breakdown).

Needless to say, when I realized the genetic link we hauled ourselves over to Alex’s pediatrician to report my diagnosis and get orders for bloodwork to see if Alex does indeed have it.  At that point, we figured I was deficient, but we didn’t know if I was partially (a carrier) or fully expressing deficiency.

Of course Alex’s test came back showing G6PD deficiency.

Deep breath.

We had a weekend to wait for the results of the test, so I started making a plan of how we would remove any triggers from Alex’s world, as I had already removed many from mine.  How would we make this huge transition easy for him, to avoid self-injurious backlash on his part.  I almost consider it good fortune, that I have been through major lifestyle changes due to medical issues (particularly type 1 diabetes, planning a pregnancy with type 1 diabetes, and being pregnant with type 1 diabetes) in my lifetime, and I definitely had a few footnotes jotted down in my memory about what worked, what helped, and what derailed any progress or screwed with my ability and desire to stick to any of the previous restrictions and demands.

Lucky.

HA!

This isn’t lucky.  This just IS.  It’s genetics. It’s nothing that we can control.

It should have been caught earlier, in Alex and in me.

Some of the impact on him has been neurological.  Some of the impact has been structural.  All of the impact has made his journey so arduous at such a young age.  It is unfair. All of the impact has been accepted over the years as it seemed unavoidable and that dragging our feet would have caused more damage.  I feel like I failed him, like I accepted too quickly, even though the reality is that questions had dragged on epically, without chance of answer or just a chance of helping him.  Not curing him of anything.  Making his life better.

The reality?  If we had known sooner, the past few years would have been more manageable, easier.  Not just because of the impact this has had on Alex, but because of the way I have not been able to give his special needs the attention I need and want to give to help him have the best life possible.  I can’t kick myself for being sick.  It truly is not my fault. I try to accept that as best as I can.

It’s heartbreaking when Alex approaches me a couple of times a day and tells me “Mama, you used to feed me that (food that is off limits with G6PD deficiency…more on that tomorrow) it was making me so sick and we didn’t know. Why did we not know? I ate that so much. We didn’t know. It’s strange that we didn’t know.”

He wants answers and so do I.  I want to know why this was never mentioned or tested despite obvious symptoms and why prescribed precautions in situations where the status of G6PD deficiency is not known were not followed.

If it had just been me, I perhaps could let it go a little easier.  Actually, that is not true.  This has impacted Alex doubly because I am his Mama and for his seven years on this earth, he has learned to adapt to my abilities and disabilities and he shouldn’t have to do that.  He should have had a carefree first 7 years, with a well Mama who could play with him and wasn’t stuck in bed for two years.

He shouldn’t have been born early.  He shouldn’t have been subjected to excessive stress in utero because nobody bothered to test me before giving me a medication that could have killed me but my little guy absorbed some of the stress.   He shouldn’t be an only child.  The past 7 years of challenges and fatigue and illness put a logical block on having more kids.  Now we find out that this block should have never needed to be placed in our way.   He shouldn’t have been put through a zillion challenging medical tests and exams before the end of his first year without them first testing for the most common enzyme deficiency in the world.  When he wouldn’t keep anything down, soy formula was one of the only things that worked with any regularity.  We didn’t know we were feeding him a major trigger that would slow down his growth and development.

I should not have gone blind from cataracts at 20.  But I did.

I should not have been given contraindicated antibiotics that almost killed me when I was coming out of a coma with a massive bone infection.  I shouldn’t have been given 3 more medications that are contraindicated to combat the negative effects of the initial antibiotic, for sepsis that I was much more prone to because of?  Any guesses.

There are links being researched that link some expressions of this deficiency to autism, type 1 diabetes, and more.

I am angry.  I had a moment of realization that had me sinking into a thick sadness on the day Alex’s results came in, but I was glad we had answers.  The sadness came from the realization that all of this pain and injury and illness could have been avoided if someone I have never met spoke up,  if accessing adoption records and family medical history was not virtually impossible for bastards like me (see Bastard Nation), and if medical professionals did not see “adopted” in the space where family history goes as a clean genetic slate.

And if someone had ordered a simple blood test when the symptoms were obvious.

All of this could have been avoided and we would be healthy, and perhaps more innocent and less physically scarred.

I’m sick of saying that what doesn’t kill me makes me stronger.

Because someone knew.  And this almost killed me and my kid and someone charted this course we are on and gave us less of a chance at thriving than we deserve.

What is getting stronger is my anger.

And Alex.  Alex is getting a little bit stronger as he adjusts to life without a constant bombardment of triggers taxing his little body.

I am grateful for that.  I am grateful that he can feel the difference in just two short weeks. I am grateful that I didn’t lose him before his birth or after because of the ignorance of others.  I am grateful that he is so accepting of all of the changes we have had to go through in the past few weeks.

Anyway, I’ll cover more of the changes and the fun stuff later this week…

For now  I need to sleep so I can find the energy to keep us moving forward.

xo

Bek

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A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

This is Spinal Tap…

8 Apr

I’m going in for a spinal tap and a brain MRI…Think we may have narrowed things down, but still big ? everywhere. I just want to feel better. I just want to not hurt this much (I’m used to constant spine and arthritis pain, but this new pain has got to go. I just can’t muscle through it and meds aren’t cutting it.)
I just want to play with my kid.
Update once I am upright again…

xo
Bek

Thirty nine minutes until midnight….

14 Jan

Just Keep Swimming.....

It’s almost midnight.  1 hour and 32 minutes and our health insurance expires.

I’m not irresponsible.  Really. If anything I’m too responsible.

I have faith that my husband will be approved for an individual plan and that my son will be approved for the care he needs, but it is taking some time.

The next time I will be covered for medical care will be July of this year.

I’m terrified.

I feel the countdown in my veins the way I felt the anticipation of the feeling of falling –that gut in your throat verge of crapping your shorts feeling of falling- when I jumped almost three stories into the azure Caribbean bay almost 10 years ago. 10 years ago.  My body was healthy and strong. Complex in it’s nuances, but nowhere near as damaged as it is now.

1 hour 28 minutes.

I am without medical insurance because I did the right thing. I called customer service two years ago and again eighteen months ago and asked questions to make sure I understood the material, so nothing could possibly go wrong.  Unfortunately, customer service has, as it turns out, less of a grasp on the materials than I do.  The agency has concocted it’s own definition of one small word that is worlds apart from any other definition.  And it is that discrepancy that leaves me wondering what will happen to this broken body in the next six and a half months.

I paid $2000 per month for COBRA + copays for the three of us.  Because of this, I have to wait. F&$% being responsible. I could have just said screw it and lapsed and the boys may have qualified for medical care (better medical care than under our COBRA plan- at least for kiddo’s autism related OT and language therapy). But putting kiddo at risk of not having coverage, and risking spouse being unable to find a plan because of a pre-existing condition, was not an option.  And we couldn’t risk me going over to the medicare plan I had turned down due to group/employer coverage under spouse’s job because medicare was out of our financial means-more so than $2000 for COBRA and copays (or $750-$1000/month which is my share of that expense).  (Yes, you read that right-medicare more expensive out of pocket than COBRA/private coverage. I’ll share my comparison chart here once I update it.)  So for my forty five minutes on hold, I got an incorrect answer. And now the costs could be a burden until I die. Perhaps even longer.

I don’t even get my 45 minutes back to spend with my kid.

I am furious. I am sad. I feel, like my broken body has been pulling me away from my little boy since I got sick and now somebody who was completely incompetent in their work is pulling me away from that sweet child even more.  And I’m furious at the economy and the spouse playing Spore while I sweat and struggle to make sure everyone else is taken care of.  I want someone to share the energy and the drive for something better, for providing for our child, to share the load and the burden so I don’t have to be buried faster.

I want someone to say “Hey, I’m here. Slow down. We can do this together. We are in this together.  I won’t stop to rest while you carry on with your broken back and your unbalanced and heavy load. We’ll carry it together and then we can sit back and enjoy the world together.”

1 hour 14 minutes.

I warned my family last night, “If you are going to get sick do it tomorrow”.

I feel like there should be fireworks.

Or some sort of fanfare.

Or maybe we should have juggled knives or eaten fire or something before the 24 hour countdown to this particular midnight.

But regular activities, the danger of everyday things looms over me for the next 6.5 months.  On top of my already dysfunctional body. My personal time bomb.

My quest for answers about my newer inflammation – in my chestwall, my ribs, my joints, the inside of my eyes, the growth in my sinuses- is paused.  But the discomfort persists. It’s not white hot pain and pressure like my busted and deformed spine.  It is a deep ache when I move, like I feel asleep (in my pasty whiteness) on the beach for hours… My fingers, my knees, my ankles, my feet, my elbows, and my ribs feel like that sunburn pulling raw skin taut. But there is no aloe. And the pain meds don’t relieve it and I’m allergic to NSAIDS.  And it feels like pneumonia too, but it isn’t, it’s just the inflammation in the cartilage of the ribs.

This on top of osteoarthritis, and Type 1/Juvenile Diabetes, and a laundry list of other things. And I’m just so exhausted and I haven’t had a day off in almost 7 years.

So I’ll wait. And I’ll sleep. And I’ll hope. And I’ll sleep when kid is at school. And I am realizing how many things I do in a given day, even when mostly bedridden, that under these circumstance, could be risky.  And I can’t afford that.

I will have to make what art I can without flame, without grinding equipment.

For six and a half months.

58 minutes left.

I only hope that I make it through.  When I come out at the other end, I hope I will have moved on, but I can never forgive the time lost, that belonged to my sweet little boy.

54 minutes.  If I’m going to get sick, I had better do it soon.

My dark humor is coming in handy during this challenging (read: totally miserable and f’d up) time.

Things that occurred to me:

If I’m going to off myself, I had better succeed.  Oh well, 50 minutes left, surely any attempts to resuscitate me would fall after midnight, and no coverage and I know 911 and the hospital do not have a money back guarantee.

To paraphrase Dorothy Parker:

I might as well live.

The other thought I have:

That this is an opportunity to test some alternative (at home, dietary and physical therapy) ideas regarding my bone and joint pain.  Nothing risky, but perhaps I’ll track my personal routine changes here, as well as the results and the costs….

And to top it all off, school wants to put kiddo in 1st grade NOW. More on that tomorrow.

I think I am rapidly becoming exempt from managing all of this with any grace.

My smother calling to complain how I don’t bother to bring Alex to visit her or have coffee will seriously put me way over the edge. How far over the edge?  Like point of no return over the edge.

Please, nobody test this.

I have 44 minutes left. Perhaps I should shower now, so I won’t risk falling in the morning, when my coverage is nil.

I am a bit grateful that I accidentally ordered a refrigerator size box of bubble wrap from Amazon.com.  I’m thinking that a suit of bubble wrap and a helmet would be a good start for me.

Anyway, hugs all around.

Xo

B

41 minutes to midnight…..

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