Monthly Archives: March 2014

Before And After

Lalage Snow’s photojournalism of a soldier’s before, during, and after pictures entitled “We Are Not Dead” shows not only the rapid aging process that the body goes through during a major stressor; but it enlightens us on the psychological toll it takes as well.

There’s also a group I’m involved in on Facebook and recently the ladies decided to post images of their before vs. now in their caregiving career.

I never really thought about it before, exactly how stress (both physical and mental) affects our appearance. War is one thing. You expect the soldier to come back changed. But do people really understand what we caregivers go through after they come home? I think not. It’s not something that is widely talked about. It’s as hushed hushed as PTSD was during/after WWII, Korea, and Viet Nam. So we must now speak out about it and not be afraid to hide behind closed doors anymore.

Caring for my veteran is a badge I proudly wear. He served his country. That service broke him. He is my hero. And I will do everything in my power to love and care for him for always.

So, now that this has come to my attention, I decided to put together some pictures of our lives, to see exactly how much we have changed since the incidents, the pain and PTSD, the VA and all those dealings, my responsibilities and dealing with all the demons while trying to keep some sort of normalcy in our lives these last 15 years.

You just don’t realize how it has affected you, how much you’ve changed/aged, in such a short period of time until you see the pictures side by side.

Him - Before Incident Kosovo 1999

Him – Before last incident – Kosovo 1999

Him - Good Day Pushing Through

Him – On a Good Day Pushing Through

Him on a Bad Day

Him on a Bad Day

Me Before Last Incident - Kosovo 1999

Me Before Last Incident – Kosovo 1999

Me Today

Me Today

We have our good days, but due to the chronic pain and constant migraines, they are far and few between.

DiningIn1999

Us 1999

Us On A Good Day

Us On A Good Day After the Incidents

 

What I’d like to do is gather more Veteran Caregivers’ before and after photos and do something similar to what Lalage Snow did for the military members, just to see if caregiving is as changing to the caregiver as war is on the soldier. So, if you’re willing, please contact me and let me know if you would like to participate in this endeavor. I would gladly give you credit and link to your blog if you have one.

LadyJai

The Importance of Knowing Your Medication

A while back, I wrote a post on my other blog. This post has had the most hits and is the most searched for article I have done yet. Apparently there are a lot more people out there that want to know exactly what happens when you have Serotonin Syndrome.

It is extremely important to me that I share with you what happened to us because there are many ways you can suffer from the effects of Serotonin Syndrome, and it can be fatal if left untreated. Most people do not know what it is, the effects and signs of too much serotonin in your system. And it is generally caused by drug interactions.

I would like to re-post that article here because I feel that it is extremely important for our veterans and their caregivers to understand, recognize, and treat for this problem before it gets as bad as it did for us.

I Nearly Lost My Husband to Serotonin Syndrome, Twice

posted on WriteBackwards.We3Dements.Com on 12/13/12

http://www.nutramed.com/brain/neurotransmitters_serotonin.htm

Last week I nearly lost my husband.

Again.

I always dread when the doctors change his medicine. For some reason, despite the fact they document every medication you take each and every time you go into the office, they just don’t seem to take the time to go over those medications in order to check for interactions when prescribing new ones.

I should know better.

Back in 2006, my husband started taking a new medication in conjunction with his migraine medication and an over the counter sleep aid called Melatonin. On top of those medications, he was already on some heavy-duty stuff for his chronic pain as well. But the interaction came between his new medication, his migraine medicine, and the melatonin.

A relatively new syndrome had caught the FDA’s eye, but hadn’t trickled down to the medical community just yet, called Serotonin Syndrome. The Mayo Clinic defines Serotonin Syndrome as:

Serotonin syndrome occurs when you take medications that cause high levels of the chemical serotonin to accumulate in your body. Serotonin syndrome can occur when you increase the dose of such a drug or add a new drug to your regimen. Certain illicit drugs and dietary supplements are also associated with serotonin syndrome.

Serotonin is a chemical your body produces that’s needed for your nerve cells and brain to function. But too much serotonin causes symptoms that can range from mild — shivering and diarrhea — to severe — muscle rigidity, fever and seizures. Severe serotonin syndrome can be fatal if not treated.

Milder forms of serotonin syndrome may go away within a day of stopping the medications causing symptoms and, sometimes, taking drugs that block serotonin.

The first time this happened, we had no clue what was going on. My husband would fall asleep mid-sentence, he couldn’t stay awake most of the day. I blamed the new medication. I thought it was turning him into my image of what a strung out drug addict looked like. I hated it. It wasn’t until I came home one day from work and my son, then 5 years old, was wandering around our front yard and my husband was leaning up against a tree. I didn’t understand. I tried to talk to him. I tried to get him in the house. But there was no response. I literally had to drag him inside. But he tripped over the steps and fell into me, then onto the foyer floor. And that’s where he lay. I couldn’t wake him. I couldn’t lift him to get him to go to bed. I felt horrible for just leaving him there. And I felt like a <insert bad word here> for thinking he was “strung out.”

I called his prescribing doctor and got him an appointment the next day.

That’s when we found out about Serotonin Poisoning. It was something the FDA had recently caught wind of. Do you remember the problems surrounding a lot of the “lose weight” drugs, or Prozac, and such? All that revolved around this dangerous level of serotonin.  His doctor told us he was on the verge of dying. Had I not gotten him in when I did, I could very well have lost him. Though, really, I should have called an ambulance and had him in the ER. I beat myself up over that every day. But, we just didn’t know about this back then.

Now…I dread when the doctors say, “Let’s try this new medication.”

DREAD!

I am usually diligent about going through all his medications, listing them, keeping track of them, reading up about all their side-effects, and since that fateful day against the tree, going to a site that will list the possible interactions with each drug. Including over the counter medications, vitamins, and supplements. I am even leery about any “home remedy” or homeopathic anything because there is no way for me to check the interactions. I have a dear friend who tries so hard to help. She totally believes in essential oils, but I just can’t trust them. I hope she understands.

My husband has been taking his medication “cocktail” now for a few years. Last month, he went to see the doctor about the complications he’s been having with one of the stronger medications and had been considering coming off it, even if it made the pain worse. He wanted to see what would happen. But the doctor gave him a new prescription, new hope for relief.

I did my usual and memorized the side-effects and kept an eye on him to make sure everything went ok. I did not check the interactions. :(

Around Thanksgiving he was nauseous and feverish.  We thought it was the flu. He said it felt like the flu. But then it didn’t go away after a few weeks. In fact, it got worse. The pain. The nauseous. Feverish. Chills & sweats. Muscle twitching. Unable to think. Unable to eat. Unable to sleep.

After 4 days of him not being able to get out of bed and not sleeping at all, we discussed the possibilities. I couldn’t understand why it would take this long to “have a reaction” to the new medicine. And then it dawned on us, “what if it were building up toxins in his body?” And that’s when it hit me. I didn’t check the interactions with his existing medications.

But you trust that the doctors would do that before they prescribe you a new medicine, right? I mean, every time you go into the office they always ask you to list all your medicines. Heck, due to the new laws here in Florida, he has to bring in all his bottles and the staff have to count every stinking pill. So, you just take it for granted, I guess, that they would know. That they would check before prescribing.

But you know what happens when you assume.

And, I nearly lost him again.

Serotonin syndrome symptoms typically occur within several hours of taking a new drug or increasing the dose of a drug you’re already taking. Signs and symptoms include:

  • Agitation or restlessness
  • Confusion
  • Rapid heart rate and high blood pressure
  • Dilated pupils
  • Loss of muscle coordination or twitching muscles
  • Heavy sweating
  • Diarrhea
  • Headache
  • Shivering
  • Goose bumps

Severe serotonin syndrome can be life-threatening. Signs and symptoms include:

  • High fever
  • Seizures
  • Irregular heartbeat
  • Unconsciousness

When to see a doctor
If you suspect you might have serotonin syndrome after starting a new drug or increasing the dose of a drug you’re already taking, call your doctor right away or go to the emergency room. If you have severe or rapidly worsening symptoms, seek emergency treatment immediately.

Luckily, though, we caught it before it got as bad as last time. He stopped taking his new medicine. We had no idea how long it takes for your body to go back to normal serotonin levels. From what I can understand it’s all dependent on your body chemistry.  We just had to ride it out. He was one step away from the final stages again.

One more thing to add to this, he had stopped taking one of his antidepressants. All he remembered the doctor telling him was that this pill will help him wake up. So he stopped, cold turkey, because he wanted so desperately to go to sleep. When I told him it was an anti-depressant, he got really scared again. To stop an anti-depressant cold turkey is dangerous. You could die. So please, please, if you are on one, don’t ever do that. Once we got him back on that medicine, and got him to stop the new pain medication, things started getting so much better. Over the weekend, he’s been up and about, eating a little, feeling back to his old self, without the “OMG MY HEAD IS GOING TO EXPLODE” headache. Now it’s back to the normal pain he always feels. We even managed to do a few errands. I have my husband back!

The stress of the last few months has been overwhelming. I am doing my best to get through it.

Thank you for listening to me ramble. I’m sorry. It is my only way to vent and get this out. Plus, maybe it will help others know the signs of Serotonin Syndrome and help save a life.

Always, ALWAYS, check your medications. Do NOT take your doctor for granted. And never, EVER, stop taking your antidepressants cold turkey!

We are learning to recognize the symptoms sooner because once you suffer from this, you are more susceptible to having it happen again and quicker. I now suffer an anxiety attack when the doctors say, “Let’s try this new medicine” or “We need to change the dosage.”

We are always looking out for, and worrying about, strokes because he is a chronic migraineur. The amount of triptans he takes, plus the number of migraines he gets increases his chances exponentially. So, not only do we have to be diligent about that, we have to make sure we know his medication side-effects as well as interactions with any other medications he may be taking. It’s always best to periodically review them and, if you add anything over the counter, herbal, or homeopathic always go back to the interaction and add it there. You can never be too “safe.”

LadyJai

Fear

Fear
The distressing emotion brought on by impending danger, pain, the unknown, hopelessness, etc.

We all experience it.

I always thought of myself as fearless when it came to change. Being an Air Force Brat, I expected change. I was raised knowing that “change is the only constant.” Thinking back, I realized it was only a facade.

I wear it well.

With each new move came the dread of leaving friends and having to make new ones, proving myself all over again. It always ended the same. I learned to harden myself so much that isolation seeped in.

Then there was all the school studies and boyfriend angst of my teenage years. The fear of failing still haunts me. The fear of my husband leaving me like all the other guys ever did lingers at the back of my mind, even after 24 years of marriage. I still have fear of failure with my job. Each new job, each new responsibility, the possibility of any change drives the fear forward and causes panic. I’m comfortable with my schedule, my commute, my job, my life. Anything that could ever cause an uproot to my comfort zone I fear. And I think that’s why I tend to not progress/excel in anything I do. Overcoming this fear is quite difficult.

But not as difficult as overcoming the fears that haunt my soul today.

What’s worse? The fear that comes along with caregiving. I struggle daily to beat the fear back into the corner, slashing and hacking away at the negative, the fears that try to sink me. I’ve expressed some of these fears with my husband only to find out that he has them, too. After joining some of the Veteran Caregivers support groups I’ve found that my fears are very common.

Will his pain ever subside? Will he ever get better? Will we ever have a normal life? Or is this the best it’s ever going to be? Every day I go to work, I leave my husband home alone. He takes care of our son, feeds him, gets him off to school, and greats him when he comes home. But those days when he hasn’t slept, or the pain is too great, or when he has trouble waking up, I’m afraid. I’m afraid that our son will be left alone, that I’ve left my husband alone in a time of need, that he needs my help, or the doctor’s, but as stubborn as he is won’t ask for it.

Or maybe today’s the day. He’s at a very high risk for stroke because of the sheer number of migraines he gets per month. Added on to that, he has an even higher risk because of the amount of medication he takes for his migraines. Then, there’s all the other medications he has to take for the rest of the pain. It’s all so very taxing on his body, not to mention his mental state.

And that’s another point, his mental state. Anyone who suffers chronic pain will go through bouts of depression. He’s been suffering 15 years now and we’ve gone through all the cycles. On top of that, he’s been diagnosed with PTSD. So, the fear of losing him to that battle is always with me.

I’ve always feared the medications he takes. They are some serious drugs with serious side effects and mixing them together, well, that’s caused us many a heartache, too. From hallucinations to catatonic, from wired to narcolepsy, from excited to rage. I cringe each time a new medication is introduced. The words, “Let’s try this” make me want to vomit and cover my ears and scream, “no no no no no no no no no.” We’ve heard it so many times over the years. And we’ve been traumatized with two near misses with a very deadly interaction called, “Serotonin Syndrome.” I wrote about it on my other blog a while back, the last time we experienced it. It’s definitely not pretty. I do hope you will read it, just to know the warning signs–especially if you take migraine medication (triptans) and any SSRI antidepressants or even the supplement melatonin. So, yeah.  Any time there’s a change to medication I get very afraid.

Before we knew to look for side effects and drug interactions, his moods would swing drastically. There were times when the wind would blow the wrong direction and he’d rage out over it (not really, but it’s an example of how random his anger was over trivial things). It scared me because I didn’t know how to handle it. I always thought it was my fault and do my best to not provoke him. This always led to anxiety, acid stomach, and bouts of crying from me. I’m slowly overcoming this fear since we’ve learned to recognize it, understand why he experiences it, and actually manage to communicate better through it.

I think, right now, the worst fear is when he texts me “I’m in trouble.” He’s been getting worse over the last few years. Nothing we do has been any help in at least reducing the pain. And now, he’s coming off a heavy drug that’s very hard on his system. So when he tells me he’s in trouble, I panic. Does he need me to come home and help him? Do I need to take him to the ER? What if it’s worse than he’s letting on? What if I can’t get to him in time?

Then there’s the fear of financial drain. We go to the VA for some of his treatment, which incurs long travels and gas. But what the VA doesn’t provide, we have to use a civilian doctor, which is more often than not. Each year gets more expensive than the last. And we’ve already spent more in less than 3 months as we had in 9 months last year. Dear husband is weighing his treatment to our finances. Sure not having money scares me. But also watching his pain grow greater because we cannot afford to pay for his treatment scares me more.

Oh, and all those times when he has to drive himself to the doctor, especially the VA doctors that are so far away, it scares the hell out of me. Taking time off from my job just to take him to his appointments is scary enough. I don’t want to lose my job and then we would really be in a world of hurt financially. But every time he gets behind the wheel when he’s not been to sleep in 24 hours, or in so much pain, or just took some medication to dull the pain, scares me. He’s been doing it for at least the last ten years, he knows how the medication affects him. He knows when he needs to pull over. But still, it scares me. I wish I could quit my job and be a full-time caregiver but that’s not financially feasible.

And God forbid if I get sick, or hurt, and am out of work for an extended period of time. Who will take care of him? Our son? Me? What happens if I die? How would he survive when he’s told me oh so many times that if it weren’t for me and my love, he’d probably be dead by now.

There are too many fears that I face to go into each and every one of them, and they change with the situation. But you get the idea, right?

You can't live a positive life with a negative mind...

The truth of the matter is, regardless of our circumstances, we all have fears. Caregivers and non-caregivers alike. Just as those who suffer debilitating fear must confront that fear in order to get through the day, so must we admit our fears and meet them head on. If we ignore them, let them stew, the grow bigger, and quickly turn into out of control monsters. They smother us and drag us down until we can no longer surface and break through to the bright positive side of life. I know, I was there just recently, where I that’s all I heard. And I listened. I could not fight my way out and I saw no hope. I felt overwhelmed, selfish, guiltyangry, and alone. I was unworthy of anything good.

Ever since I had my epiphany to live life as positive as I could, I hated feeling this way. I knew what I needed to do. I needed to get out of the funk. I just couldn’t figure out how. It takes a lot of hard work to be positive. And I just didn’t have the energy. I needed some help and I was afraid to ask for it. No one would understand. Or so I thought.

I finally made an appointment with my doctor and he prescribed a mild anti-depressant which rebooted my brain. I started to think more clearly and I finally managed to find myself some like-minded people and I knew I wasn’t alone in all this. I began climbing up the well towards the light again.

Do I still have fears? Absolutely. Every day. Every situation. But I don’t let them rule me anymore. Some days are easier than others. Some situations, too. But it has to be a conscious effort to keep positive. It’s the only way to get through all of this.

I will leave you with one of the best quotes I’ve found about fear from the book Dune. It really is the mind killer.

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. –Frank Herbert, Dune

LadyJai

Related Articles you may like:
Unworthy
Overwhelmed
Selfish
Guilt
Anger
Anxiety, Depression, & Secondary PTSD
Grief – Or Mourning Your Loss
Changing Perspective
You Are Not Alone