Lumpless

Long time no post... lets get to it. As far as I can tell, this post is unrelated to my thyroiditis.

I can see it now in the photographs, so obvious now that I look. One side of my face has always been puffier, and, my smile was less energetic on that side.

Undoubtedly this is related to the parotid (salivary gland) tumor I just got sliced out on that side. Nothing cancerous; Just a benign pleomorphic adenoma. Already I have much less "TMJ pain" on that side.

You see, my main complaint of pain was of course on that side, in that area. The tumor itself did not hurt. And it was a rare situation. I have to be in the middle of chewing AND faced with amusement. If I am amused- before I even smile much at all- muscles around my jaw hing and/or the back of my cheeks tighten. Combined with whatever position my jaw was in, this caused a LOT of pain. But it was a rare situation, despite the fact that doctors seemed to assume that this meant I had pain when chewing at any old time. The key, however, was the chewing AND the muscle tightening.

Of course the involved muscles were the ones going around where my lump was.

At any rate, my lump was removed over two weeks ago. It was only at the base of the parotid gland, so I only lost a small bit of that. The swelling from the surgery has gone down, but that cheek still looks a little puffier than the other, as it was before the surgery. I'm hoping that the inflammation will subside, now that the aggravating factor is removed.

I am lucky that this was dealt with- I'd previously mentioned the lump to a doctor, and to a dentist, to no end. I had this lump for at least 6 years.

Grandmother

Autoimmune diseases run in families. Not necessarily the same autoimmune disease- rather, a propensity for a autoimmune disease.

My grandmother had lupus & probably scleroderma. She lived on a farm with her husband, and raised 4 children.

She died before I was born, so I only know what my mother has told me.

My grandmother also had joint pains and fatigue. My mother would stay home from school to help her out. My mother wasn't too happy with that as a kid, but... dealing with her own mother was an experience that proved invaluable to me her daughter; My mother was a family member who had known someone else with an invisible and difficult illness. Sometimes I would be in denial, and she would still be looking for answers. While it was I that needed the will to do the research- it was she that lent me needed support.

My mother tells me that her mother wasn't really nice in her later years. I imagine the pain, fatigue, and stress, can have that effect on a person. She was diagnosed with lupus, but my mother seems to remember that Scleroderma was added on later, due to a thickening/shiny skin symptom my grandmother was having.

My grandmother was diagnosed, this I know. But how long did it take her to get diagnosed? It also doesn't sound like they were able to afford much medical care for her. Did she get any help? What treatments were even available?

I have seen a couple photos on my grandmother. She looks like me. Skinnier, but similar facial structure, dark hair. I sometimes think about her, and how difficult things must have been for her.

Note: I have Hashimoto's, not lupus, but also have some aches and pains.

The Brain Fog

One of the top Hashimotos thyroid disease symptoms. It's hard to describe this symptom. Especially given that it often would present with short term memory issues.

I hear that many other conditions also cause this.

Straight from Wikipedia:

Brain fog or mental clouding is a general sensation of unusually poor mental function, associated with confusion, forgetfulness and detachment. A number of medical or psychiatric conditions and treatments can cause such symptoms, including:

• Chronic fatigue syndrome
• Heavy metal poisoning and in particular mercury poisoning
• Hypothyroidism

I was once a "straight A" student. I was able to read the textbooks without problem, and memorize them.

Now, I'm not so great at the memorization.

Worse than the memory trouble, was when I would find myself simply not being able to study.

Studying shouldn't have been such a problem- nothing I hadn't done repeatedly in the past. Noting the unusual difficulty, I would make sure I was well fed, well rested, unstressed. I would prepare myself for my study sessions in all ways possible. It wouldn't really make much difference. If the brain fog was upon me, it was pretty much a futile endeavor.

Even with all measures taken, I simply could not study. I remember nearly weeping over a textbook after I'd been attempting to study all evening without making any progress whatsover. I was that frustrated.

One of the most difficult things has been accepting that I cannot achieve academically the way I used to. It doesn't matter what I do- not happening.

What exactly was the problem, you might ask, because I'm being kind of vague here. What do I mean by "could not study?". Well I wondered that too.

I could not for the life of me understand what the problem was. The most obvious question was, had I spontaneously developed an ADD problem, that would randomly come and go? That didn't seem to be the case. But for some reason, sometimes, my brain would not work. I'd be... in a fog. A few times I thought maybe coffee would sharpen me up... which did not work at all. It'd be very awake... and still confused.

This whole thing was maddening- why was a twenty-something losing her cognitive abilities? Was I a mental case? I still seemed relatively sane, despite the my occasionally fuzziness.

It was if there was a delay in my brain's messages around itself. Normally, you'd have lots of little thoughts every minute. Imagine them clogged up and never making it across your brain. Stalled thoughts that never make from where they are generated to where they are registered and acknowledged.

The brain emails were getting lost and delayed.

The neural pathway were snowed in.

Memory boxes were jammed and refused to open.

After a while, I might just have to give up and lay down, stare at the ceiling or something. That seemed all I was useful for doing.


Now, a few weeks ago, right before finals, I noticed that I was able to open up my textbook and just ... read it. I read for just about 4 hours, even, and seemed to not have any problems. I still can't really memorize the way I used to. I can't write up notes and flashcards without my hands hurting too much. But even this improvement, was a relief.

Wishing you a good 2009

I for one, have not a single New Years resolution. All year long, I am working to do as much as I can, get as much done as possible, improve in what areas I can.

What else would I resolve to do?

I am a bit optimistic about 2009, at least. While I am still less than thrilled with a longer 10 year view, well, one year at I time. Make that one month at a time. I used to make plans and have long term goals. No longer, I'm afraid. All those plans met a slow death anyways- so I might as well just wait and see what actually happens. I now practice the "not thinking about x issue" method of stress relief. It actually is kinda working for me. This method was easier when the brain fog was around more often, though. ;)

In the long run, I'm pretty much just hoping that each year I will continue to enjoy housing, food, clothes, health insurance, and of course, an internet connection; I will continue to enjoy these in 2009, so let the year roll forward.

From ScienceDirect.com

Increased occurrence of weaknesses in attention testing in patients with Hashimoto’s thyroiditis compared to patients with other thyroid illnesses:

Click here to read more

Their results "point to subtle brain dysfunction in a subgroup of patients with Hashimoto's Thyroiditis even in euthyroid state."

Happy Holidays

Seasons greetings and good wishes to whomever happens upon this blog.

Winter isn't hitting my quite as hard as usual. I am actually still having some pains, but, I'm not as slow/tired/confused. Consequently, I am feeling the holiday spirit a bit more.

Joking with family members about how they can't get away with things now that my memory isn't as iffy, is quite entertaining.

And hey, I haven't managed to lock myself out of my apartment in months!

Above all, my favorite thing is how my hands and feet have stopped chronically getting cold.

::walks gleefully about her apartment without socks and gloves on::

To resume:

As Winter 07-8 waned (see earlier post), by the time I got to the first doctor's appointment, I wasn't in quite the constant state of pain I had been. Tired as hell? Yes. Not able to do a lot. But there is no swelling or any such outward symptom.

I was a bit frightened still. There was no way to know whether things would continue to improve, or if I would have those same levels of pain and fatigue all the time. I thought to myself- this is too much, I've already been running with fatigue all these years, how am I supposed to manage this addition? The only minor consolation at this time was the certainty that I could not have 'stressed' or 'depressed' or myself into these symptoms, nor could merely being overweight cause this.

I was concerned that I would have to drop school altogether. I found that possibility quite frustrating. No matter how much longer it takes, I plan to graduate with this computer science degree, after all these years of toil and trouble that have gone into it.

So I had my first appointment. The doctor, she was friendly. She ran some tests- mainly the concern was lupus or rheumatoid arthritis. I brought with me a long list of symptoms from the years and my journal entries.

And then I didn't hear from her. I received a postcard indicating that everything came back normal.

I found that upsetting. Both the lack of results, and the postcard notification. Neither was really the doctor's fault though.

So at that point, I was still in pain and did not know why.

I went back (yes, it took another month of waiting for my second appointment), and the doctor seemed a little surprised that I considered myself "decrepit". I fear I may not have properly conveyed my joint pain issues; Or maybe, that when none of the tests came back positive, she assumed that it "wasn't that bad".

She ran some more tests. I got an x-ray of my hands.

This time the doctor did call. But, no results. She did tell me that I should go to a rheumatologist.

A little frustrated, lacking in answers, I almost did not want to try another doctor. I thought about things. I googled.

This didn't seem like a rheumatologist problem to me. I know, that seems like sideways thinking, considering that my main problem was joint pain. But, considering the symptoms over the years... a thyroid problem was too much of a fit.

I looked up an endocrinologist, and quite fortuitously, my insurance would cover most of the visit to the specialist, even without a referral. Off I went.

The first appointment, the new doctor seemed a little skeptical of me and my printed symptom list. I came out of the appointment wondering if any progress would be made. But she did feel the enlarged thyroid- neither of the other doctors I'd been to had. That is probably the only reason she agreed to run more tests on my thyroid. She did scoff at my mention of getting a free t3 test though.

On the second appointment: Vindication. Most definitely Hashimotos, and yes, probably PCOS.

I sincerely hope that is the extent of my problems, but with my luck, one never knows.

What bothers me the most is that... if I had not decided to go to an endocrinologist, how long would I have gone on undiagnosed? I guarantee you a long time. And if I didn't have access to a computer and internet… if my insurance hadn't allowed me the visit...

Now, onto the “other” doctor.

When I was 19, I went to a doctor complaining of fatigue and weakness.

She ran some tests- I give her some credit, she did at least check my TSH levels.

Test results showed nada. So, nothing happened.

She sure did like to mention my weight a lot though, in following appointments.

Now, I understand why a doctor would be concerned about my puffter self and the resulting health risks. But, every G.D. time I went to see her... I just don't see why she couldn't say her piece and then move on to address other health issues.

I did see another doctor at the same health clinic once, and complained about how I would sometimes get the "jitters". She asked me if I cried a lot. I looked at her like she was insane. I was sent to some sort of interview with a psychologist type person in the clinic after that, but for some reason, I did not seem to reveal any deep dark depression. (I was described as a nice goal oriented young woman, by the way :D ).

No wonder I developed an aversion to going to see doctors. That is unfortunate- there are probably a couple of incidents that really should have been reviewed by a doctor.

I can sorta understand these doctors point of view. However, contemplating the effect my symptoms have had on my life for oh, the last 10 years, leaves me in an unforgiving mood.

Above, I mentioned seeing one doctor twice, before seeing the endocrinologist. There was a good 3 month gap in between those two doctors.

In the intervening time, I went to see this doctor that was (technically, I suppose) my 'regular' doctor, the one I went to see when I was 19 about the fatigue and weakness. I went to see her solely for a refill of my Nexium prescription (I have acid reflux- faulty sphincter).

I thought to myself, you should practice full disclosure, as she is a health care worker who is attempting to care for your health. Maybe you were too young before and misunderstood her attitude.

I started in with "I have started to experience joint pains since last winter-"

She goes "You know, losing weight would help with that."

I couldn't believe it. No inquiry as to when the joint pain started, where the join pains were located, no curiosity about frequency or severity.

Nice.

At the time, I was hungry. That occasionally leads to jittering. I was also nervous. Which also can lead to jittering. And then, I was suddenly furious. Well, I... started jittering like mad. I couldn't conceal it.

Suffice to say, she probably thinks I'm insane.

That is okay. I don't really intend to go back to see her. Ever. Except maybe once, with the medical records from the endocrinologist in hand.