Monday, November 28, 2011

GETTING HONEST: I'M HAVING A ROUGH GO OF IT

In the midst of reading everyone's blog posts and Facebook status updates, I'm feeling a bit down. You see, I'm having a rough time of it lately and I just don't know how any of this is going to play out in the long run. I've been feeling sick for so long now and tried so many different things that I just don't know what the answer is or when things are going to get better. And I admit, I'm feeling very sorry for myself.

Longtime readers will remember how in the spring I wrote about having insomnia and chest pain and general discomfort associated with my GERD. After an esophageal spasm (I think) sent me to the ER in Portland as I was about to board a flight back to Oakland, I tried several different things to make myself feel better. Because of the heart conditions that run in my family, you can never be too careful. I've had countless doctor appointments and so far the official medical diagnosis is that I have premature ventricular contractions but they're not severe. They're so not severe in fact that I shouldn't even notice them. I had follow-up appointments with the cardiologist who put me on a treadmill and made me run uphill like the dickens which showed a perfectly functioning heart. I had two sonograms (damn those things hurt) that showed no blocked arteries r gave the cardiologist any pause. My cholesterol is high so I was put on a new medication. Unfortunately a side effect (for me) is terrible muscle pain so I've stopped taking it until my next cardiologist appointment in a couple of weeks.

While all of this is going on, I cut out wheat and all grains (minus beer) and for awhile that helped tremendously. I went from having daily GERD attacks to one or two a week that were pretty mild. An added side effect was that I lost 20 pounds. Score! On the medication front I take Nexium daily but lately it's just not enough and so I'm also popping Pepcid Complete and Tums throughout the day. It's a constant struggle wondering what will hurt and what won't. My endoscopy in mid-August revealed agitation of the esophagus and/or a peptic ulcer, but nothing that needed to be treated any way other than what we were already doing.

So, according to two specialists, I have problems but they're not severe and I shouldn't worry. 

While I was generally okay during the days the nights are terrible. I don't sleep. When I hear new mothers complaining about how they only get an hour or two of sleep a night I know how they feel - only, it's me that's causing my own sleepless nights. My mind races. My body does strange things. I sometimes wake up gasping, feeling like a bolt of electricity has just run through my body. I'm on medication, but it's not supposed to be for the long term. With the meds I get to sleep between 1 a.m. and 2:30 a.m. Without the meds I get to sleep between 4 a.m. and 5:30 a.m. I'm back online for work between 8:30 a.m. and 9 a.m. It's well, exhausting.

Unfortunately things got worse last Sunday night and have been going down hill from there. Everything was fine. We had a good meal and were watching TV. My jaw - both sides - started to hurt really bad. I didn't think anything of it except that maybe it was my TMJ acting up (even though it didn't feel like TMJ). When it was time for bed I took some ibuprofen because it doesn't have a bad reaction with my insomnia medication. I laid down and within seconds I was having shooting pains in my chest and what I describe as fire in my belly - essentially, the same symptoms I had when the lady at the Alaska counter at PDX called the ambulance for me. Then my arms went numb. Then my face went numb. Then my head felt like it was in a vice grip. I was so scared, but I'd already been through this once before at a hospital with inconclusive results. I tried to relax and eventually fell asleep sometime around 3 a.m. still with pressure in my head and with slight twinges in my chest.

The next day my chest pain was gone but the jaw pain and pressure in my face and head was still there. I was scared while the chest pain is old hat, this numbness is new. I called the doctor and requested an appointment that afternoon. Alan came home to go with me. She - a new doctor - told me that I was basically fine and needed to just be zen because multiple good doctors have said I'm okay. Because the face/head pain & numbness is new she's referred me to a neurologist. I have an appointment in January. She also prescribed me Celexa, a new anti-depressent. I asked her if I was okay to travel since we were leaving the next day for New Orleans. She said I should go and have a good time. And I did, in general. But it was hard. It was oh so hard. 

The red-eye flight was basically great with my anti-anxiety pills knocking me out for both legs of the trip. And walking around the first afternoon while we waited for our room to get ready I felt great. At dinner, everything was wonderful. That night I had a few drinks and we went to the jazz clubs and I was so, so happy because I felt good. I felt wonderful for the first time in a long while.

I woke up the next morning with the pressure/numbness in  my head and left arm. After breakfast I started having chest pains and worst pain in my arm. It never let up for the rest of the trip. After Thanksgiving dinner I was in the room crying in so much pain. I thought my heart was going to explode. It hurt so bad. as bad as its ever hurt. And every time I get one of those stabbing pains in my chest, I get this warmth and numbness that radiates out to my left arm and up my neck to my jaw and face. Web MD would classify this as a heart attack or a stroke, but to quote Alan, "if that's the case you've had 300 of them." 

We had to leave one of the clubs when the pain & dizziness was more than I could handle. The whole trip every time I ate I felt sick to my stomach and then the acid would come, and then the chest pain and dizziness and numbing radiating out over my body would hit. I tried to rally. I had fun in so many instances but the whole time I'm thinking please don't let me die. Because that's what it feels like. Your body is revolting against you: the two organs that are supposed to keep you going - your heart and your brain - are seizing up and causing you major discomfort and pain. And all the doctors can tell you is that you're okay. But you don't feel okay. You feel terrible.  

I had some more minor attacks on the flight home yesterday. Trying to convince myself that I wasn't going to die at the Denver airport, I looked up the symptoms for anxiety attacks and yeah, in addition to my GERD and my PVCs, I've definitely got panic attacks. I'd say at this point they're gripping. That logical bit of me said, "you're not having a heart attack or a stroke; you're having a panic attack and you'll be okay." But when we were in the car on the way home and I got a stabbing pain in my chest, well, all logic flies out the window. By the time we got home at midnight I was in very real pain. This was not something I was making up. This was not in my head. 

I know Alan's tired of it. I can see it when he looks at me and that hurts worst of all.

All day today my chest has been twinging and my left arm has been warm and numb. I feel like I've got an anvil on my chest, but more than anything I've got lead around my heart. I am so unhappy and so sad and I just wish that I felt well. I'm a burden to my husband and it makes me sad. I'm afraid to be by myself in case this isn't just anxiety. I'm terrified every minute of the day and at night. But at some point I have to tell myself what will be will be. But I'm just so scared. And in pain. And wishing that I was neither. So yeah, I'm in a rough place right now. And it sucks. It really, really sucks.



14 comments:

  1. Jessica Gruver7:33 PM

    I've followed your blog for awhile now, and so am somewhat familiar with your ongoing health problems. Have you actually gone to see a therapist? If these are anxiety driven attacks, that might be at least a partial solution. And it could definitely help with the guilt you're feeling about how your troubles are affecting your husband. I have problems with stress & anxiety, and I also have Fibromyalgia which comes with a slew of miscellaneous problems in tow. I spent about 6 months consulting with a therapist just talking my reactions to stressors out, and also learning a few basic biofeedback skills. It hasn't solved everything, but it's definitely helped me a lot. I learned how my body was reacting to stressors, and some tools for interrupting those stress signals to regain control of my body again. It probably can't solve everything, but if you're already trying medication then it might be wort a shot. I hope you find a way to feel better soon.

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  2. cheryl @ nefotlak.12:58 AM

    oh Becky - that all sounds so so horrible. not having proper answers to everything must also be absolutely hell. please make sure Alan sees this post. you must. I've been at mega low times - and have felt that my closest person in all the world (my husband) wouldn't want the burden - but usually it's not at all the case. my husband hurts when I hurt - of course - but he also wouldn't want me to go through it all alone. and when I've finally fessed up to him how low I was feeling - he was always there for me - and always will be - I'm sure of it.
    know that I'm thinking of you - and hoping that you'll find the answers.
    loads of cyber hugz from far away down here.
    cheryl xox.

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  3. Ei-Nyung Choi10:58 AM

    Holy fuck on a stick, I'm so sorry. By now, I should realize that you are putting up a brave front but I had been hoping no news (not really "no" news, but less news) was good news health-wise.

    Not knowing or feeling like they -- thus you -- don't have any idea what's wrong must be one of the worst things in the world. You go to experts to get answers and they have nothing. It must be demoralizing. My doctor has done something like that in the past, and it feels like such a violation of professional trust to *know* in your heart of hearts that something is definitely wrong, but they can't or won't confirm it, making you feel like you have no place to turn. And even worse must be that you've been asking even more people, and they still don't have answers.

    I can't imagine how terrifying the pains must be. There is the pain, then there is the fear of what it all means. I hope that someone comes through with an answer soon, so that instead of treating the symptoms as the doctors have been doing, you can treat the root cause.

    I'm sure that Alan isn't tired of your problems, but I know feeling that way is just as terrible as it actually being the case. He's probably tired, just as you are tired, but never, never of you & of taking care of you. You guys are one of the best couples I know. It's a rough time for both of you -- especially you -- and these are the times you want to lean the most on your loved one, but also can feel the worst for feeling like it makes you weak. It doesn't. You are not and have never been, in the 13 years I've known you, weak. You and Alan are one of the strongest couples I know. But we do all have our relationship lows, and if it is one for you, I hope it comes out of it soon, and strengthens you in every way.

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  4. Holly Allen1:49 PM

    I'm so sorry Becky. Everything Ei-Nyung said is true. I wish there was a way I could help you find answers, or relief. I hope the neurologist is able to help, but January seems like a long time to wait.

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  5. Frontporchindiana3:32 PM

    I used to get panic attacks all the time. They were exactly as you just described. I was terrified, thought for sure I was dying or something. In the end I just needed a different anti-anxiety med and something to heal my ulcer.  I hope you get to feeling better.

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  6. Thank you for taking the time to write. Hearing that others have gone through the same thing helps immensely because it serves as validation that this really does happen to people. As of last night I've started a new medication so I'm hoping that in the next month I'll notice a change in my anxiety levels. I'm hoping my appointment at the end of the month with the gastro can help identify why all of a sudden I'm getting worse pain than what sent me to him in the first place. In the meantime, I'm hoping that my combo of Nexium, Pepcid Complete, and Tums can compete. So far they're losing.

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  7. January DOES seem like a long time to wait. When I explained to the receptionist that I have been previously diagnosed with migraines and that MY HEAD IS NUMB she didn't seem impressed. I know she's just looking at the calendar and plugging me in where it's most convenient but MY HEAD IS NUMB!

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  8. I think if I could just have a definitive answer, I'd be much better but this somewhere in between is what's making me worse. We know I have heart problems, they're diagnosed. They're not supposed to be severe, but according to all literature over time they can become severe. What qualifies as "over time" in this scenario? I really don't like my cardiologist at all (he's kind of an asshole) so once I meet with him next week I'm going to see about getting someone else for my continued care. And we know I have GERD. It has caused inflammation of my esophagus which is problematic. But how much inflammation and how problematic? What I have can lead to esophageal cancer. And then there's the whole gall bladder issue (apparently GERD and gall bladder disease often go hand-in-hand and people don't treat the gall bladder because they're treating the GERD and oh-by-the-way my family has gall bladder problems too). It's just this never-ending giant question mark. I just want everyone to say, "you're definitely fine, you have no problems, it's anxiety." Because I can logically understand anxiety. But I can't wrap my head around why now, all of a sudden, everytime I eat, regardless of what I eat, I feel like my chest is going to explode. 

    And thank you for the kind words about Alan and me. I know we're strong, and I know he loves me. But sometimes - and this is likely because of my anxiety, I know - I see his face when I'm having an episode and I think, "at some point this will get old for him." 

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  9. Thanks for your kind words and thoughts Cheryl. Alan reads the blog (he's one of my faithful Google Reader subscribers!) and we have a very healthy relationship when it comes to sharing our feelings, so on that front things are good. 

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  10. Hi Jessica,

    Thanks for taking the time to comment. To answer your question, no I haven't gone to see a therapist yet. There are a couple of reasons for this, but they basically come down to (1) finding the right one and (2) having had a really bad experience with one in college. To say I'm gun shy is an understatement. I don't want to go to the wrong one and find myself even more emotionally damaged. But I'm working on this.

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  11. Becky, I'm really sorry to hear what you're going through. I went through a very difficult episode of debilitating panic attacks and can relate to so many of the feelings you describe, especially 1) the fear of being alone as you really do think dying is possible and having people around you can somewhat distract from the physical/emotional pain and 2) feeling like a burden to your loved ones and feeling like maybe you're on "borrowed time" after too many meltdowns. It gets better! Hopefully the Celexa helps...everyone reacts to medication differently, but Lexapro literally saved my life. I went from multiple attacks a day for months to maybe one a month after only a few weeks. I also felt the same way about finding a therapist, but ultimately I found one that was helpful in the sense that I used that time for my meltdowns and got some objective advice from someone without a "horse in the race" so to speak. I know what a strong relationship you & Alan have, but it may help you to feel like you're not putting too much of this on him and you're paying someone to take some of that heat off :)

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  12. Oh Cara, I had no idea. You always looked so put together and with it. (While I thought I was losing my mind.) The crazy thing is that these attacks didn't start until well after I left the biggest stressor in my life behind. I thought for sure my health - both mental and physical - would get better after that, not worse. Alas, here I am.

    I always think that if I'm out in public and I collapse at least someone will see and call 911. But with me working from home it's just me and the cat and that girl ain't going to help.

    I'm definitely going to look at getting a therapist. I just have to find the right one.

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  13. Jenny3:36 PM

    Do your Dr's know that you're taking that much Tums?  It can cause issues, in and of itself.

    Have you had a complete blood panel done recently?  And by that, I mean not just your basic WBC, HCT, cholesterol, etc.  I think you should have all your electrolytes done as well - calcium, magnesium, potassium, sodium, chloride, phosphates and bicarb.  Some of the signs and symptoms of imbalances are some of the issues that you're currently having. 

    Are you going for the MRI soon to find out if you have a herniated disk?

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  14. I get a full work up every six months because of my Graves Disease. I'm actually getting that done next week. All of those are in the normal, except I need more calcium and my white blood cell count is regularly high.

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