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Not because I want to worry you more...

Tuesday, October 17, 2006
written by Java Junkie

Ever since my last post, oh a month and a half ago, a few people have emailed me, called me, or asked Monkey if I'm ok. A couple of you left posts on my last post asked. I'm really sorry to have worried you all. The bottom line is no, I'm really not very ok.

You see my doctor, a very nice man, upped my SSRI during the visit I had with him back then. For those that don't know, SSRI's are anti-depressants. I had originally, very reluctantly, allowed my previous doctor to place me on an SSRI because, according to her, some people diagnosed with CFIDS responded well to SSRIs. Anyone who's known me over the years can tell you other than the hell of a summer I had this year, I'm NOT a depressed person by nature. In fact the only thing I had been depressed about was being so ill for so long and all of the battles you fight, every day, with people's ignorance and misunderstanding. Just because I don't "look" sick or act "sick" people, even Monkey, sometimes forget that I AM sick. I'm actually very sick. I'll break it down for you later in this post. But I digress.

Because I was depressed somewhat about being increasingly sick for 8 years now and my lifestyle was such a vivid contrast to what it use to be back then yes, I had experienced some depression which is understandable and normal. So begrudgingly I allowed my doctor to put me on a very low dose of Zoloft (25mg.) And while it did not help my illness in any way (in fact I felt a little worse after taking it) I did notice I was not quite so depressed about being ill so I remained on the dose.

My sister who is a virtual walking medical encyclopedia did a bit of research about it and found that when used to treat my illness, SSRI's work much better when combined with bupropion (Wellbutrin.) When I visited my doctor I asked about it and he said he wanted to ramp up my Zoloft first because it was such a low dose. He said eventually he wanted it to be 100 so he doubled my currant dose to 50mg.

Now bless his heart, I know he's trying but he truly does not understand antidepressants I don't think. Most people know if you give a person who is NOT suffering from depression an anti-depressant and it will actually act AS a depressant because it retards the uptake - or something like that anyway. Long story short when my doctor doubled my dose I fell into a deep depression (and am still there.) I feel anti-social, withdrawn from the world. I struggle to keep my house from collapsing under housework. Most of my laundry's clean, however none of it is folded or put away, for example. When I'm not near tears I'm often edgy, snapping at poor Monkey for the slightest thing. My sleeping patterns became extremely erratic - or should I say even more erratic than they've always been.

For the first time in my life I tried to shop my way out of depression. Monkey found himself driving me to Walmart and Target and Meijers like we had won the lottery, me trying to finally bring our house to feel like a home. I really didn't get things that were totally unneeded. Things like more than the 4 towels that we owned previously, matching bath mats and actual shower curtains rather than just the see-through plastic liners were the targets of our spending. For the first time in 4 years I had more than 2 or 3 shirts I could wear and feel like I looked nice in, topping the list at like 4 or 5. New shoes for everyone. But then I would get home, look at all the stuff, and almost feel even more depressed because then I felt guilty for having spent the money.

Like I said, I've never been a depressed person at all. Until the most recent of years, not even about my illness. I've always looked on the positive side of things, no matter what challenges life threw at me - and boy let me tell you I have attracted quite the list of challenges through my life. Raised by an alcoholic mother and step-father and a fairly absent father, I was molested for 6 years as a young girl by my baby sitter's husband. After growing up I married the first asshole that came my way and ended up a battered wife, having my son kidnapped, and stalked. And those were just the highlights. And I had NEVER had a problem going without in times of need. I grew up poor, essentially, but I am grateful that I did. I don't remember WHAT I got for Christmas any given year (except little things here and there like the ziggy day of the week underwear I got when I was little) but I remember the time spent with family. I remember sitting on our sad, beaten brown couch that was ours, my Tover, my Mother and I, cuddled up with all the lights off except the Christmas tree lights, watching our Christmas tree turn slowly in it's rotating stand while listening to my mom's Christmas albums and life was perfect. But that's a post for another day. Through it all, however, I was sunny almost to a point where people thought I was an airhead.

I have also, for about the last month - month and a half been experiencing daily, almost constant, head aches, quite a fair share of them turning into migraines. Almost none of them alleviated by Advil, Tylenol or Excedrin or any combination there of. So, another trip to the doctors was scheduled, and rescheduled, and rescheduled.

The first time it was rescheduled was because I hadn't gotten my butt in to get the blood work done he had ordered during my last visit, which I lost by the second rescheduling, although that wasn't the reason for the reschedule. The morning of the second reschedule I awoke to find out we had no hot water in order for me to take a shower (pilot light went out) and when I went to get Parker out of his bed I found that rather than sleeping in he had been pursuing artistic endeavors with the contents of his morning, uh, well.. Eww, right? Well back up and read the first part of that sentence again. No hot water. No hot water in which to bathe him, wash the sheets, blanket and Raul in, no hot water in which to scrub down the crib in. So after about 20 diaper wipes I began, and spent the next 2 hours, boiling pots of water for a bath warm enough for Parker. On the last pot, as I was dumping it into the tub, I heard the unmistakable sound of the velcro tabs of Parker's diaper. Seconds (literally) later he was peeing on our new couch. Obviously I had my hands full.

However a week ago last Wednesday I did make it in. After being re-issued the blood work order, telling my Doctor of the daily headaches, trying to explain to him that the increase in Zoloft had made me terribly depressed, I walked out with referrals to a psychologist (just because a specialist would understand the complex workings of SSRIs better than my doctor) a neurologist, a rheumetologist and a cardiologist along with appointments for a halter monitor, a tilt table test and a CT scan for my brain. I thought the neurologist and CT scan were a bit over-doing for simple head aches so I waited to follow up on the referral to the neurologist. I figured once the CT scan showed nothing there would not be a need. That's what I thought anyway.

Last Wednesday was the CT scan and although I was a bit nervous about the scan itself, all went pretty smoothly. Until Thursday morning when I received a call at 11:00 from my doctor's office stating they had gotten the results back and that the doctor would like to see me THAT DAY, "ASAP."

After calling Monkey home from work (I don't drive), rushing in (what else are you going to do when you hear such a thing) and waiting in the examination room for 45 minutes the doctor came in and told me that my CT scan had shown that I have had "several severe strokes." That's right, me, 30something, never had high blood pressure or even close to it, never had high cholesterol or even close to it, never drank much at all or used drugs and until I became ill was the picture of health and fitness am having severe strokes. The ONLY thing in the CONS column for health is that I use to smoke - USE to. Obviously a bit of a shocker and at first all I could do was sit there with a look on my face that was probably pretty close to what it would be if you walked up and slapped me with a cold, dead fish. He wants to do an MRI and for me to follow up with the neurologist but of course insurance companies being what they are I have to go through all of the rigamaroe of getting pre-approved first. I can't really tell you any more than that because even when I did eventually chase him down to ask him the questions that were racing through my mind, he essentially replied "I have no idea, lets wait until you get in to the neurologist and see what he has to say."

In other news I'm really missing my mother A LOT these days. Out of the blue I find myself singing the song she use to sing every time I'd talk to her on the phone - her own version of I'm a nut and I have to stop and catch my breath as I'm hit by a sudden wave of grief. I know I had a strange and at times estranged relationship with her but I really miss her so very much. I miss who she was and who she could have been. I miss her silliness and her love for her grandchildren. I miss her dreams and and her devotion to her extended family. I don't know if I miss her more because of my depression or not and it doesn't really matter. She's not here and I miss her.

So here are a couple things I want people reading this to know:

This is not something I can just pick myself up by my bootstraps and dust myself off from - I am not CHOOSING to be depressed, my doctor is chemically making me that way. However I'm waiting for the red tape of my insurance to ok a psychologist before screwing with my antidepressants any more. I know that stopping them abruptly can be VERY bad for you.

My list of illnesses start with my big one, CFIDS. You can find out more about it here from Wikipedia. It is an actual illness recognized by the CDC. You can visit the info they have on it here and here.

I also have Hashimoto's Thyroiditis. It's "easily" controlled with synthetic thyroid hormone but "easily" is a relative term. I have to have my thyroid levels checked every 6 months minimum (usually a lot more often) and then usually my dosage is increased. It usually takes about 8 weeks for my body to get use to the new level and it remains at the right thyroid levels for about 8 - 12 weeks and then, as my immune system attacks my thyroid more my thyroid levels drop and a higher dose is needed. When my dose is too low I experienced uncontrollable weight gain, extreme intolerance to cold, even stronger fatigue than normal, a menses from hell, and all the other things listed in the above link. Long story short my thyroid levels are on track about 2 1/2 months out of every 6.

I suffer from hereditary migraines. I'm sure I don't need to link to anything regarding that, most people know someone who's suffered from them if they do not themselves. I've been having a lot of them lately but until I see the neurologist my doctor doesn't want to put me on any type of migraine related medication (Imitrex, Maxalt, etc.)

I've also been diagnosed with PEBV but the connection to CFIDS is controversial and I was diagnosed with PEBV in 1998.

and last but not least I have Mitral Valve Prolapse and suffer from Mitral Valve Regurgitation, which puts me in the 11 - 15% of people that suffer chest pains, shortness of breath and heart palpitations from MVP. I was told in 1998 I could no longer exercise or do anything that would increase my heart rate or it would cause heart damage. Unfortunately I don't seem to be one of the majority that have a low BMI thanks to my thyroid lol.

Anyway, wah wah wah boo hoo woe is me. This whole thing about strokes just has kind of thrown me for a loop. Everyone is trying to keep my spirits high, my Tover saying "Just be thankful that you haven't suffered from any apparent brain damage or loss of functionality." and as sweet (and true) as that may be, my brain also just keeps on screaming "but WHY and how do I stop that from possibly happening in the future?!?" because the last thing on this Earth I want to do is leave my children w/o a mother or leave Monkey with a slobbering, drooling vegetable to take care of.

Anyway, I'll see you when I feel better. Thanks for worrying.

9:36 AM ::
  • {{{{{{{{{{{{ HUG }}}}}}}}}}}}

    ('cause there's nothing else to say right now)

    You're constantly in my prayers.

    By Anonymous attentive, at 2:24 PM  
  • Out of the deep. Good to hear from you. Love you, miss you, wish I could comfort you. I know what you are going through is horrible and please be patient with those of us who don't know what to say. Even the ones who know better.

    By Blogger nmariluna, at 8:36 AM  
  • Jeepers what a post! My brother takes synthroid and I know what a funk he get's in when his dose is off - I can't even imagine adding into that equation. Although he has suffered a few minor strokes in just the past few years...?... Anyways - dear Java Junkie, I hope you begin to post more often again.

    By Blogger Jenny, at 3:05 AM  
  • I am so sorry this has all been going on! I hope soon you can get some answers an some relief! I have the Synthroid issues and the mitral valve prolapse stuff too. Yuck! Is all I can say about that, and to add more to it just plain stinks! I will keep you in my thoughts and hope things get easier very quickly! If there is anything I can do to help, please let me know!

    By Blogger radioactive girl, at 5:08 PM  
  • I think about you all the time. You know I'm here for you. If you need anything. Love Mom

    By Anonymous Anonymous, at 7:07 PM  
  • Dont know if nuggles still help but since they're pretty much the only tool a teddy has, I'll try those.

    By Anonymous Jakers, at 1:00 PM  
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