rambling thoughts

Too sick to write for real. Just thoughts...

Still restricted to bed. Can't be touched, cause it hurts. palpitations resonating through my upper body every 10 seconds. hot and cold flashes are painful and frequent.

trying to avoid e.r. they won't help. so what will? cardiologist will only deal with palpitations

how to get a doctor to take me seriously. dr. g is known to make me cry by saying that i just need to exercise. but he's the only pots doctor i have.

paroxysmal rage and crying spells are making me scary and useless. maybe i'm just mentally unstable

Dr. W--look into sleep meds for worsening insomnia

Custom CTO? How to get one. If it would help.

Dr. K--help with emotional pain

how to keep living this life? when you just don't want to anymore. nothing anyone does can actually help.

poor buttons, my puppy with gallbladder disease, she hurts all the time. she has no choice but to wait, too.

consider a port for frequent fluid infusions. symptoms seem to lessen with increased salt and fluids

Frustrating Heart Symptom

I have had this symptom occasionally for a long time, but every doctor has ignored it. I just want to know what it is, especially since it is getting more and more frequent.

So, originally, I labeled this symptom as a palpitation. But it seems to be more than that.

I will do my best to describe.

It feels like my heart forgets to beat, and then starts pounding and trying to make up for what it missed. It feels a bit like being startled. But I don't just feel it in my chest. I feel the pounding in my hands and the front of my face, too.

It usually happens spontaneously. But when it's really bad, it will happen repeatedly, especially when I try to talk or even just exhale.

Another way to describe it is the feeling you get when you hold your breath for too long, so your heart starts pounding. But I'm not holding my breath.

I would really like to know what is happening, and why. I also wonder if an anti-arrhythmia drug might help.

Too bad none of my cardiologists have ever taken me seriously. But it feels like a symptom that should be taken seriously. It disrupts whatever I'm doing, often for an entire day. The only relief comes from laying flat and breathing steadily (not too fast or slow).

Yet another reason to never again leave my bed.

The Inevitable Reality Check

Whenever I write a painfully real blog, I later feel guilty for sharing this dark side with the world. I don't think I'll delete the last post. But I will say that rage attacks are horrific for anyone involved. And I'm currently suffering from Pre-Menstrual Psychosis. I believe this is caused by compression of the pituitary gland. So, I will officially be skipping my period for the foreseeable future. There is no good reason to go through that kind of torture. I do not like being possessed and out of control.

However, my hormones simply made my everyday struggles seem even worse. My feelings were still valid. Just a bit augmented.

Thanks for caring.

The Emotional Toll

Today was truly unbearable. My symptoms have been so persistent. My functioning has been non-existent. The misery is so all-encompassing. It reached that point again...where I just can't take it anymore. The hysteria lasted longer than it ever has. The rage and despair just took over. I was a person possessed. I know it put such a strain on my family. I wanted to stop. I just couldn't. For hours. I finally put myself in a cold shower, after 3 Klonopins failed to calm me. I feel so terrible for my family. My loved ones are the only reason I haven't left this world much sooner. There's nothing within me that would stop me from giving up, completely and utterly. How else would I go through 7 years of intense distress...10+ years of pain? I have no choice. I can't even choose to cut myself anymore. I have no idea what I would do without my support. They are the only reason I hold on.

It's just that sometimes, it feels like a tug of war. My body is constantly telling me that something is horribly wrong. But there is nothing to do about it. Absolutely nothing. And it's so frustrating for those around me to not be able to do anything to help. But the tug of war is in me. I want to give up. I want to succumb. I don't know how to face another day (which I've said 1,000 times before). But I can't succumb, because I could never hurt my family that way, after all they've done for me.

But when will it be enough? When will I finally have gone through enough? How bad does it have to get before they'd let me leave?

I know the answer to this question. I don't get to leave. It will never be an option, no matter how unbearable my illness becomes.

I guess, on days like today, when I am so completely out of control, I wish we could have just called 911, had an ambulance come over and tranquilize me. That is what I needed. The medicine didn't work. After several hours, I put myself in a cold shower and screamed and cried. I had to treat my body like a body possessed. It was completely out of my control. Believe me. I'm great at meditation and progressive muscle relaxation. I can lower my blood pressure within a couple minutes (which is very unsafe). But none of that was an option today. With this level of depression and rage, it truly is beyond your control. So, sometimes it's best to just isolate yourself, so your loved ones don't have to go through all of the pain with you.

The shower worked this time. I truly hope that next time, we will have something stronger than Klonopin. I've been dealing with these hysterical rage attacks for quite a while.

I'm just sure I shouldn't be sharing all of this information with the whole internet. However, I know that other people in my situation read this page sometimes. And I'd rather not put up a front, in the one place I'm supposed to be able to express myself...to describe what it is really like to go through torture for 7 years straight.

I understand that this is a down time. Today is a day when I need to learn, again, how to come to terms with my situation. I will reach a point of acceptance again. And the cycle will continue. As it has for so long.

Do you know how long 7 1/2 years is? Think of how much has happened in 7 1/2 years. And all that time, I've been feeling just like this. All these same symptoms. Constant, unending pain. Body failing. Since I was 18 freaking years old.

I follow the people that used to be my friends on Facebook. I watch, I read, I follow their lives. I see all of the things they do, all of the places they travel to, all they achieve and accomplish. I lost my shot at achieving anything. I had to give up on my dreams.

And honestly, most of the time, I can accept that. I really can. I just wish that each day didn't have to be so hard. If I just had to lie in bed all day and accept the loss of everything I should be doing, I could accept that. Seriously. Believe me, I've been accepting that for quite a while. Since high school, my symptoms have made me miss out on things that I should be doing. If I could just rest during the day, in semi-comfort, I would be able to handle this better.

But that's not my life. I don't just lie in bed all day, comfortably, watching the minutes drag by. Nope. I hurt. I hurt so much. The pain is so omnipresent. My body twitches uncontrollably. My heart cannot keep a steady rhythm, so it races and skips and pounds. I feel like I'm being electrocuted. I can't get comfortable no matter how hard I try.

Is it time to seek medical marijuana? Ketamine? Is it time to be hospitalized and tranquilized full-time? All of those sound preferable to my present.

But I wouldn't know where to start. And I don't think my family could accept that. It's hard for them to accept that I should not be getting out of bed for anything, most of the time.

I'm just glad I'm not alone. I need to try to stop venting to the same people. It's too much of a burden for them, because they love me so much. That's why I put myself in a cold shower today. I didn't want to drag my mom through the storm with me.

I wish I could stop crying, so I could stop torturing my loved ones.

Loneliness as time crawls by

Nothing new here. Just spending more days isolated in my room, confined to bed except for bathroom trips (thank goodness for that).

I don't so much mind my time being pointless (for now). I do mind that time moves so slowly. That I am so often alone. And that I can't have more "comfortable" time.

So much of the time, I'm having twitches throughout my body, especially in my legs. The muscles are fatigued and achy because they twitch all the time.

I'm also having trouble chewing, due to jaw pain.

It hurts to move even in tiny ways so often. Like right now, I get a wave of pain throughout my body every time I move. It's so frustrating.

Then, of course, there's the ice pick in the head type headache that lasts 2-5 days at a time.

Then, there's the baseline headache of pressure everywhere and the "sunken halo" headache.

I've been having palpitations more recently, as well. It feels like my heart misses a beat or two, then tries frantically to make up for lost time. I feel my heart pounding through my chest, neck, and shoulders when this happens.

The knee pain is very sharp with weight bearing, or even sitting or laying in the wrong position.

The body ache is quite severe tonight, as well.

Oh well. That's all that is happening here. I wish this time could go faster. I wish I could skip ahead to better days. I know there will be better days. It's just getting there that is so hard.

Denied again. The Plan.

"we cannot book a surgery until:

*
the bone density has significantly improved
*
a follow-up visit at TCI is done
*
the CCF failure is again confirmed with an ICT
*
the TCI surgical committee ratifies the CCF revision


PB"

Blunt, as always. Initially, this news was absolutely heart-breaking. I spent about an hour in hysterical, inconsolable, angry tears. However, I now have a bit of a more concrete plan.

#1 Survive the next 2 months, doing whatever is necessary. This includes: spend less time alone, don't feel obliged to work the 1-2 hours/week scheduled, focus on the goal.

#2 Go in and get the DEXA scan on February 22. Pray for "significant improvement".

#3 Schedule a follow-up and new Invasive Cervical Traction surgery date a.s.a.p. (hoping early March?)

#4 Schedule my LAST surgery, a Cranio-Cervical Fusion Revision a.s.a.p. (hoping in April?)

#5 Recover and move on with LIFE!!!!



That all sounds great. I'm glad I wrote it out. I don't feel quite that confident yet. Intense sadness makes you feel a bit fragile. However, I still believe that recovery is a possibility for me.

Over the years of illness, however, the term "Recovery" has had dynamic meaning to me. Initially, after my first brain surgery, at age eighteen (2002), recovery meant complete recovery. It meant going on to live a "normal" and active life with no pain, no sickness, and no restrictions. With the extended length of the illness, going into the eighth year since decompression surgery with NO lasting relief, I now have a new meaning for recovery.

I understand that my life will never be without restrictions. I will always need plenty of rest. I will never work 40 hours/week.
It will never be without sickness (significantly more than average).
And it will certainly not be without pain.

I now have modified my hope for the future, to be more realistic for someone with this amount of nerve damage (from postponed surgeries) and the bones and joints of someone fifty years older than me.

My hope is to have pain that only interferes with my functioning some of the time. My hope is to resume working 10-20 hours/week. My hope is to have enough health and energy to have a (small) family. My hope is to make my life about more than just me. To contribute more to the lives of loved ones. To be a shoulder to cry on, instead of the one crying. To payback all of those that have helped me get to this point. To be the supporter and joy that my lifelong partner deserves. To bring happiness instead of stealing it. To stop surviving my life and start living it!

I need to find a way to accept that I have lost much of my teens and 20's to this illness. That doesn't mean there's nothing left. Look ahead, and stop looking back. Don't hold onto worthless resentments of everything that was lost. Understand that what really matters is what I haven't lost...what I still have left.

I know these things to be true. It's really living that way that is the challenge. It's finding a way to feel that way all of the time. Not just know it, but feel it.

Especially when I have to cope with being weighed down by seemingly limitless bouts of depression. For the majority of the last year, I've had a lingering numbness about my health. That's one kind of depression. Today, I do not feel numb. The floodgates are open. The tears haven't really stopped all day. Today, I feel incredible, deep, desperate agony.

But I do understand that this is just today. If I would just go to sleep, it will be a new day. A new day! To keep developing that most-hated virtue named patience. And it's challenging partner: perseverance.

So I will keep living. Because I have many people that love me. That's what makes me so lucky. I may still be crying ('cause I can't seem to stop), I will certainly have pain, and I'll want to give up many more times. But giving up is never an option. How could I let down all of the people that have loved me and cared for me through these very dark times? That would be ungrateful, unforgivable.

I apologize for the intense mood swings. It's probably best that I spent most of the day alone. This is quite unbearable. But somehow, someway, there is still hope. Because there is still a chance, a possibility for a better life; for a change. I'm not out of chances yet, so I'll keep fighting, even when the pain is this complete.

Thank you to my family for loving me through this...literally, pushing me through this with love.

Desperate Message to New York

June,

This is Carolyn. In October, my endocrinologist, Dr. Camacho, finally agreed to start me on Forteo. (20 mcg injected daily) I'm supposed to wait until the end of February for my next bone scan. She is certain that by then, the DEXA will reflect a higher bone density. However, it doesn't feel like I can wait even that long.

I previously taught piano lessons to 25 students. Gradually, I've had to stop working completely. I am now restricted to bed 99% of the time. I'm missing out on my life. I've been quite patient, but I am now in a very desperate situation. I've been seeing a neurologist at a pain clinic, but it doesn't seem to matter anymore. Nothing can help with the severe headaches, arrhythmias, tachycardia, blackouts, choking spells, and nausea. Most of the time, I am so hypersensitive that I can't be touched.

The only thing that temporarily relieves symptoms is traction. That is the reason I am so certain that the revision of my cranio-cervical fusion is the only thing that can help. My fusion was done in 2003, when I was 19.. In 2008, it was found to be "inadequate" during invasive cervical traction. I'm 26 this month.

I understand that I am supposed to wait until I have been on Forteo for 6-12 months. However, it took me 15 months just to convince my doctor to start the Forteo after finding out my BMD was low. My condition has been on a steady decline during that time.

I am wondering how soon it would be possible to schedule surgery. Please. I understand that I am supposed to continue waiting. It just doesn't seem like a possibility anymore. I know how invasive the surgery is, and how long the recovery takes. But the longer I wait to have surgery, the worse state I'll be in at the time of surgery. Is there anything that can be done?

Thank you for your help.

Carolyn

A wedding.......but still in bed the rest of the time

The wedding and related festivities were wonderful. Luckily, my body cooperated when it had to. Of course, we knew not to expect very much of it. We even had a pillow so I could lie on the floor at the restaurant.

Since then, my body has continued on low. I often wear the same pajamas for 5 days straight. I only leave the house about once a week (and even that seems like way too much). I spend basically all of my time in bed or on the couch. My body is really failing. I'm just grateful for days that the pain stays at a 7 or below. But many days, it goes higher.

It's hard to really comprehend how long I've been sick. Luckily, I'm too sick and tired to really think about all of the lost time. Still, looking back, it seems that my functioning has decreased a lot this year, meaning I was more functional before. It's hard to even remember that time. Time goes by so very slowly. That's why the wait for surgery (hopefully this spring) is so difficult.

I would write more, but there hasn't been much to say. My only medical update is: STILL WAITING!

I still have the constant headache and constant joint pain, both of which get worse when I try to get out of bed. The fatigue varies in intensity from day to day, but is still ever-present. I also have extra headaches, that feel like pressure in the head or sometimes ice-picks digging into my skull.

A frequent symptom bothering me lately is severe hypersensitivity. This is when my skin is so sensitive that my clothes hurt. My body feels too hot and too cold all at once. And I can't get comfortable no matter what I do. I also feel that my spine is being compressed like an accordion. When I feel like this, the only option is sedation. Any other existence is unbearable.

My mom was away today, so my grandparents came to spend time with me, which was really nice, even though, as always, I provide no entertainment. This bed-bound life is very boring. Especially when even talking takes too much energy.

The only reason I have the energy to type right now is that it's late at night. Computer usage is now limited to high-energy times. That's how low it's gotten.

Okay, headache is an 8.5 tonight. OUCH. I haven't been sleeping well, but I guess I'll try. If nothing else, the room will be dark and silent...just the way I like it.