Tuesday, February 24, 2009

Returning to Square One

I feel so wrong for feeling let down. Why am I feeling sadness? I called the rheumatologist's office on Friday to find out the lab results from Anime's latest testing. I was absolutely stunned to hear the nurse tell me that the testing no showed signs of lupus and no signs of ANY auto-immune disease! I was so shocked that I barely remember what else I asked her other than if we needed to keep the appointment scheduled for September.

Don't get me wrong, people. . . I am THRILLED that she doesn't have lupus or any other autoimmune disease!

But we're back to being without any answers. We still have no idea what it is going on with her system. We're back to square one and that is NOT a place I want to be. I was let-down because I thought we were close to an answer, a diagnosis, and now we're not. Granted, it's something ruled out but where do we go from here?

The nurse said that we are still to call if she has fevers over a two-week period. We are still to follow the medicine schedule, although I still don't understand how a pain medicine is supposed to stem off her symptoms of fever and fatigue. We should still chart/journal her health and pain over the next several months and return in September.

After talking with my mom and mom-in-law (still not sure what to call her as she's not really my MIL any more, more like a "second" mom) I have decided to get a copy of these lab results and take them to our new general practitioner. I'm scheduling an appointment for a general (thorough) check-up for her with Dr. H (our new GP) and want to review her history with him to see what options he thinks we should explore. Her symptoms are so generalized to so many things that I guess we're going to have to work on differential diagnosis to find our answers. Researching via the web has shown ideas, some as simple as mononucleosis; others such as Lyme Disease or West Nile (both highly probable in our area), to others that are arguable in their classifications like Chronic Fatigue Syndrome. Maybe it's a B-12 deficiency or a serious step infection that simple won't go away. There are so many "ifs" out there that you could drive yourself insane trying to figure it out.

All I really know is that my child has "episodes" of fever & fatigue that we can see coming on based on how she acts and looks. She has constant pain in her legs. She is severely cold compared to others and she has pain in her chest along with some shortness of breath that the inhaler didn't relieve. This is not normal for a healthy fifteen year old and it has been happening since her first strep infection in September of 2007. And no-one has been able to tell us why or look at me like I'm not some hypochondriac mom (which anyone who knows me would tell you that I most definitely am not, I tend to fall along in the "suck it up, you're fine" camp).

So as not to miss any more school, I'm making the appointment for a No School day in April, which will also give us a little time to document her health ups & downs. Anime handles this so much better than I do. She's doesn't seem to worry while I torment myself with the thought of what if she turns out to be one of the patients that by the time they figure it all out, it's too late because whatever she has is wreaking havoc in her system right now (okay some paranoia creeping out here).

The main reason we're going to her GP is that her grandma (my MIL) works there (and has worked there for many years) and if there's one thing I've learned in life . . . nepotism works. There will be a bit more of a push to find answers because Grandma is there and you take care of family.

In the meantime, I'll do my best to keep my paranoia at bay.

Thursday, February 19, 2009

Anime & the Rheumatologist

For those of you that have been following me for a while, you might remember that we have been going through ups and downs with Anime's health. We have been (not so) patiently waiting to see the rheumatologist in our area that agreed to see her. ( May a pox be cast on the rheumatologist on our insurance plan who refused to see her because she is not sixteen!) Monday was our big day. The office had given us the first available cancellation due to her increase in frequency of her symptoms.

We were told early on to be prepared to be there for a while as the doctor likes to give each patient the time they need rather than rush patients in and out. He did that, and for that I am grateful. What he didn't do was give us a diagnosis.

Maybe I went in expecting too much? Perhaps I was fooling myself, even though I know there is no one specific test for lupus? Maybe I just wanted, so badly, to know what is running rampant in my daughter's system so that we could finally understand where all this is coming from and what we are facing in the future? Probably all of this combined is what was running in my head.

What did we get? We got a "maybe". Maybe this is lupus. Maybe not. He agreed that there is definitely something wrong, something that most likely is in the auto-immune disease category. But we have no concrete answers. Nothing to still the questions or, at the very least, send my question in a new direction. We do have a plan, of sorts.

We are to keep a diary. Track each day, her ups & downs, her temperatures, when we see her starting to go down-hill & how long it takes for her to recover, when she is taking meds & when she is not. Most importantly, we are to track how she responds to the sun. Specifically, does she break out in a rash & is it on her face (most typically in a butterfly pattern), and/or does she become ill with exposure to direct sunlight. The doctor had wanted to know how she reacted to the sun last summer but I couldn't tell him as A) I wasn't paying attention to it last summer, and B) she rarely went outside last summer because she felt so crummy most of the time. Apparently reaction to sunlight is a big factor in diagnosing lupus, although I have read that not all lupus patients have the photosensitivity component.

We did come home with one pain reliever to try. She is taking prescription strength Naproxen at 500mg twice a day. She is taking it for two weeks now and then will go off it to see how she does. When I see her start to slide down-hill again she is to back on the Naproxen to see if it will help curb the symptoms. This is a stop-gap to get her through the rest of the school year as she is dangerously close to the maximum number of sick days allowed. Regular doses of ibuprofen don't even touch her pain, thus the higher dosage of Naproxen. Since it can upset your stomach, she also has Omeprazole to take before hand, to limit the stomach discomfort of the Naproxen. She is also taking Loratidine again to help with hayfever, sinuses, etc. to see how that affects the symptoms.

I was surprised that a chest X-ray was not ordered, considering the pain she has when breathing. Nothing was done in regards to her shortness of breath and chest pain. She did donate more blood to the lab vampires for various tests. The office will not call us unless anything is abnormal, but I plan to call tomorrow to find out what the results were and what her ASO, ANA, and hemoglobin levels were. I also want to ask if they tested for all of these things, which go along with lupus.

All in all, I don't feel we're any further ahead than we were before. I still feel like I'm being a hypochondriac when telling doctors what she's been going through. Most of her symptoms are so general to many diseases that sometimes I feel as if they're looking at me like I'm making it all up. We were told that if she starts to have a fever or more per week over the course of a couple of weeks we need to call in to the office. He said they may not be able to get her in to be seen because he is so busy and is short two partners. If that is the case we are to take her to her general practitioner. This is not because they will really do anything for her, but rather to have it "documented" on her medical record for the sake of diagnosis. Hell, if I'd realized that, I would have taken her in for EVERY fever she's had over the past year and a half. But I didn't because I knew they wouldn't do anything for her or they'd do the reverse and just stick her on another antibiotic. I'm one who prefers not to use medication unless absolutely necessary.

I'm frustrated and worried and scared. Scared that this may turn out to be something huge that's being missed with how slow this whole process of diagnosis is. Worried that something irrevocable is happening inside her body to any number of organ systems while we search for a diagnosis in order to be able to start some type of treatment. Frustrated that in a country with such supposedly wonderful health care, we have to wait MONTHS to see a specialist.

So I will track her health and every little thing that goes along with that. We are set to go back again on September 9th to show our little diary to the rheumatologist. SEVEN MORE MONTHS! It's ridiculous. A big part of me is wondering about attempting to get her in to be seen aT a children's hospital/clinic about 5 hours away from us or even if we could get into another rheumatologist in either of the (bigger) cities that are about 3 hours from us. Or would it be better to stay the course and document for the next several months. I know that we will have to call back for an earlier appointment because there's just no way that she will go seven months without another relapse into fevers/fatigue.

This is a guessing game that I don't want to play anymore.


Sunday, February 15, 2009


The wanderer in me is beckoning. It starts as a whisper, a passing thought, turns into random daydreams, until it is a strong voice in my soul, pushing, cajoling, calling. It is a siren's call to the bohemian in me. Pack up, pick up, jump in the car and go. Pick a direction, any direction, and drive.

It is squelched by the responsible side of me. Children need stability, routine, the familiarity of their life of the moment. This is what I had growing up. They've had too much instability in their short lives already.

Their father had travel, constant change, lots of upheaval. Here, there, from the Midwest to Hawaii, to Samoa, Thailand, back to the Midwest with a few different states mixed in. Childhood possessions reduced to what could fit in one small box. I saw the effect it had on him and his sisters.

I want the stability for my children. It is why I stay where I am now.

My soul calls out for change, new lifestyles, new people, new places. I am a vagabond at heart, I'm learning. Dreams find us living overseas, or traveling North America for a year or two. Just to show the kids all the different lifestyles there are. That ours is not the only way to live, nor the best way to live.

So the responsibility and the vagabond war within me. The stable, responsible me will win. I weep for the bohemian that will remain caged. For now.

Tuesday, February 10, 2009

Avoiding the Slippery Slope

Thank you, everyone, for your encouraging words on my last (depressing) post. I felt somewhat better after writing. I don't know why I avoid it at the times when I need to write the most. Writing has always been my outlet, my stress reliever, my way to work things out. Okay, I do know why I avoid it. I have been blogging for over a year now and I still carry that fear deep inside of me that these words of mine will be used against me. I know that this fear is a little irrational. I know that the people I could see attempting to hurt me would not win. But it's there all the same.

I also know myself well enough to know that I am sliding down that slippery slope of depression again. It's something that I will very likely have to battle all of my life. I quit taking medications almost two years ago and have attempted to manage without. I don't feel I'm anywhere close to needing meds again but I also don't want to hit that bottom where I do need them. What I need is to follow through with my chosen word for the year . . . ACTION. Action is one of the best ways to fight this battle, I've found. Quit making excuses or playing the if that happens, then I'll do this game. Just do it! (thanks Nike!)

Here's what I need to "just do" this week.

~make a dentist appointment for the kids

~send in the application for CHIP's to see if we'll qualify in addition to my health insurance (rheumatology appointments and potential medicines are not cheap)

~sit my butt down and STUDY! One exam in Microbiology on Thursday, nursing school entrance exam next Wednesday, a physiology case study and a lab due this Friday.

~write on a schedule! Thanks, Emily, for your suggestion to start "The Artist's Way". I don't have it on hand but I do have "The Right to Write" by Julia Cameron, who is the author of "The Artist's Way", and I will start with that.

~spend at least two hours sorting through boxes in the basement and actually hanging some pictures on the walls to start making this house feel like a home and a sanctuary.

Shania, thank you. You're right. YOU, wonderful readers, are my tribe and I am thankful to have found you. J, you're right and I would love that, although it's easier said than done (I may just have to watch my latest Kevin Smith movie for some really big laughs). Vanessa, we need to get out of this funk!

I wish more of you would delurk so I could meet you too. As for my action plan? I'll start on that tonight, after work because you know, I am . . ." The Procrastinator"!

Monday, February 9, 2009

A Recap in Which I Ramble

It's been a busy week, yet it really hasn't.

Friday found us at the local ski lodge for Actress's Girl Scout meeting. For $5 they were able to ski all evening. Actress picked it up like the natural athlete she is; within an hour she was skiing the bigger hills . . . no more bunny hill for her. I brought Action along as he's been dying to snowboard somewhere other than Grandma and Grandpa's big ditch. LOL. He was a bit more spendy ($45) and while he enjoyed it, he decided he'd rather ski next time. Both of them are hooked now. Anime didn't get to join us as she was ill that day (although lately, when isn't she ill!?) We live only a few miles from this ski lodge and I'd really like to go again and actually try skiing myself. I grew up water-skiing and I've been told by those that know me and know how to ski that I should pick it up fairly quickly. I much prefer the kids to be involved in sports that they may continue beyond school, things like golf, baseball or softball, swimming, skiing. None of mine have a high interest in basketball or football. Action fizzled with soccer and although Actress wants to try soccer, we have decided to investigate the local martial arts center instead.

On another note, I called the rheumatologist's office a couple of weeks ago to inquire again if we could be moved up to an earlier appointment as Anime seems to be struggling more and more. They agreed to move her to "high priority" on their list. I didn't actually expect anything to come of it but last week received a phone call asking if we could come in on Monday, Feb. 16th! Of course we can! As luck would have it there is no school that day and I have the day off from work! That kind of luck doesn't happen very often with me. So I'm counting down the days and hoping that we come home next Monday with something concrete and the beginning of a plan of action. If this kid misses much more school she'll be repeating, and considering she's already repeated a grade due to her dyslexia, I do not want her repeating another. She's been told by me that as much as I hate to say it, she has to go to school unless she's vomiting or in the hospital, no if, ands, or buts.

As for me, well, I'm struggling again. I started a week behind with school and am realy struggling to catch up. I had my first physiology exam on Friday and I failed. Yes, failed. Had it been all multiple choice I could have passed and maybe even pulled a "B" but 40% of the grade was based on essay questions and I just couldn't pull the info out of my brain to explain chemical sequences and the exact process of DNA/RNA in detail. I am seriously questioning if I have the self-discipline to do this.

I also received my test date for the nursing school entrance exam. One week from tomorrow at the exact time I am scheduled to work. Trying to switch shifts with people is worse than pulling teeth. I am waiting for a call back from the school to see if the test is being given on any alternate dates.

I'm in a funk right now. Questioning my decisions, my parenting abilities, my whole "where I am going in life". I've been avoiding writing & studying & doing anything at all by spending too many hours browsing the internet, taking quizzes on Facebook, increasing my high score on Gem Swap II, anything but what I should be doing.

Part of my funk is highlighted by Friday night at the ski lodge. I ran into a friend of my sister's. We visited for a while and then Mr. Ex showed up (he was taking the kids home that night as it was his weekend). Mr. Ex and the friend began visiting even though he didn't remember ever meeting her (and honestly I don't think he ever had even though she insisted they had). The friend is a photographer and Mr. Ex asked to accompany her because he though wedding photography would be a fun side business. They irritated me in how they referenced my sister's wedding photo business. It also irritated me because photography is something I've wanted to pursue but have never been brave enough to do so. But the kicker was when a former sister-in-law called the friend (yes this family is so hard to follow that we even know each other's friends) the friend said that she was visiting with Mr. Ex and - uh- um - I quickly filled in "former sister-in-law" for her instead of my name as it dawned on me that even though we have met and visited several times she didn't remember my name! She remember Mr. Ex's name but not mine. And that right there summed up what I have been feeling for a long time. I am not memorable. I am one of those people that everyone likes but no one remembers. The story of my life in one sentence.

Now I know it's poor form to write about feeling sorry for myself, and I'm not feeling sorry for myself exactly. I just feel like I'm drifting again and what I do is of no import. I know that's not true, I have three little souls whose lives are deeply affected by my actions. It's all just part of this funk I'm in, I know. I'd just like to find that circle, that "tribe", where I fit, instead of always feeling like the outsider.

Sunday, February 1, 2009

2/1/09 Day 18/365

~sleeping late

~parents willing to drive 2 hours to bring the kids home

~instant messenger for catching up w/long distance friends

~scoring a nursing school entrance exam study guide for $12 w/B&N membership & a coupon on top of that

~falling into my comfy bed after a long night at work