Tuesday, April 01, 2008

FEELING BETTER.....I HOPE

My first migraine of this last bunch of migraines was on February 21, 2008. It was followed by five more migraines early in march for a total of six migraines, ending with the last two on March 12, 2008. During the entire time of getting and recovering from the migraines I have a major brain fog. The migraines were followed by over a week of dizzy spells. This was followed by a period of just feeling out of it. I really didn't start to feel significantly better until late last week. I still have moments where I feel odd as if I may get another migraine at any moment. So five weeks of my life gone. Right now I am able to pretty much function but I am pampering myself a bit in order to make sure the migraines don't return.

I have been reading a lot about migraines and have confirmed the connection that I suspected between my under active thyroid and the migraines. It gives me hope that once I FINALLY have my thyroid under control I will not get all these crazy migraines!

A side note, Sarah's numb feet (while running in gym) are a bit better but it's still happening.

UPDATE MAY 29,2008:

I ended up having 10 migraines in April. Eight of those were in one six day period. That was the week that I decided to stop taking my cabergoline. My last two migraines were on April 30, 2008. I am still feeling pretty crummy but have a renewed hope. I have an appointment with a new endocrinologist on June 3, 2008. My hope is he can stabilize my thyroid and I will get rid of these migraines. I have an appointment with Jefferson Headache Center in Philadelphia for September 30, 2008 just in case. I'm hoping by then I can cancel it because I am feeling better.
In the meantime I am tired, have hardly any stamina, my eyes keep twitching and I'm still seeing sort of funny. I hope no more migraines.

Monday, March 03, 2008

SARAH'S NUMB FEET

In the future, this will be a post about how Sarah's feet went numb anytime she ran. Hopefully, by the time I get around to actually writing it, I will have the good news that the problem was resolved. I think we may almost be there.

Another reason why I haven't posted....this blog could easily turn into one depressing post after another!

WHY I HARDLY EVER POST ANYMORE

I haven't been posting much because I really haven't been feeling well. Its been almost two years now that I've been dealing with out of whack hormones. It seems like every three or four months I have some new difficulty. It started in the spring of 2006 when I began having migraine headaches and my period started coming every three weeks. I've had a pituitary tumor removed in the past. Since the pituitary is the master gland located in your head and attached to your brain, it can cause some hormonal problems. Among other things, these hormone troubles can mess up your period. I was worried in 2006 that it had come back (50% of pituitary tumors grow back after surgery).



I went to an endocrinologist to find out if it had grown back. She ran some blood tests and had an MRI done. While I was there she looked at my neck and felt it. She found a thyroid nodule that needed to be checked out with an ultrasound and then a fine needle biopsy. She also had some blood work done for possible thyroid disease.

My follow-up visit was filled with bad news. I had a mass on my pituitary and I had an under active thyroid caused by Hashimoto's disease. Hashimoto's disease is an autoimmune disease where my own body is destroying my thyroid. I've been trying to control my thyroid hormone levels ever since. Its bounced between under active and overactive. Mostly just under active and slowly getting worse. Each time my blood work shows numbers that are out of the normal range I feel crummy. It takes several weeks for me to feel better from a new dose of medicine. I recently started taking a higher dose 5 days ago. One of the signals that something is not right is that I get migraines. I also have major brain fog. I also feel exhausted and often times fall asleep during the day. There are other symptoms that I get but those are the worse to deal with.

The mass on my pituitary was not definitively found to be a tumor. However, one of the signs that it is a tumor is that the level of your hormone prolactin is elevated. Mine has been going up and down for the past two years. We figured out that when it goes up it causes me some of the same symptoms as the thyroid does. Mainly, migraine headaches and brain fog. In November we decided to start treating it and with medication we've lowered it into the normal range. In the first six months after finding the pituitary mass, it did not grow. I will be having another MRI in March to see what it looks like now. I've taken to calling it "the tumor" instead of "the mass". I really hope it hasn't grown. It's 1.1 cm, anything over a cm is considered a macro tumor as opposed to a micro tumor.

Since it takes me weeks to recover from either my thyroid hormone being off or my prolactin level being off, I spend much of my time not feeling really well. I know that it could be worse but another symptom is feeling down in the dumps. I think a lot of it is hormonal but there's also the fact that I'm just plain sick of all of this. Whenever I get another migraine, I just think "not again."

Note: I've read this over but I don't have the mental fortitude to try to make sure it makes complete sense.

UPDATE MAY 29, 2008: I spoke to my neurosurgeon and he is almost 100% sure that the mass on my pituitary is not a tumor. Possibly just scar tissue. He had said this before but I was worried because of my elevated prolactin. He said that my prolactin level is not really high enough to be indicative of a tumor. He said it would be at least 75 - mine's always less than 50 but more than 30 - it bounces all over the place. I really trust him and believe that he is right. So now I call it "the blob" on my pituitary. Actually its really adjacent to the pituitary. After feeling really sick and having side effects that I am pretty sure were because of the cabergoline, I decided to stop taking it. A lot of those side effects have gone away although I am still feeling badly.

I am seeing a new endocrinologist soon because I am sick of feeling lousy. I'm hoping a new doctor with more experience will be able to help me. He is around 2 1/2 hours away in Philadelphia but I've read a lot of great recommendations on him. I'm hoping it will be worth the trip and I will feel better. I'm hoping a switch in thyroid medication will help me. I am filled with hope...I feel like I've lost these past two years of my life.

SARAH'S EAR TUBE MAKES HER HEARING EXTRA SENSITIVE

Well, Sarah had her tube put in on January 7, 2008. She was mostly worried about not eating and not sleeping well and having it cause her a migraine headache. This did not happen. We arrived at the hospital at the scheduled time and then had to wait in the waiting area for a half hour. We got called back to the surgery area and asked a few questions. She had to put on her hospital Johnny and then was put into a bed to wait some more. It wasn't long before the Anesthesiologist came by and told us he was going to insert the IV before he put her to sleep. When Erin had had tubes put in (twice) they had put her to sleep with gas and then inserted the IV. I had told Sarah that this was what would happen so we were both quite surprised. He felt her arm and told us that she had a good vein. OOPS he missed it. Things went down hill from there. Sarah's eyes were bugged out of her head as he tried to do it again into her hand. I was holding the other hand and felt it go from warm to cold and knew that they wouldn't have much luck. Her veins had collapsed in her panic. She didn't cry but she did feel feint. Then she felt sick to her stomach. Finally, they decided to put her to sleep with gas and then put it in. Both hands were really bruised up and stayed that way for weeks. They must have hit some nerves because she had some weird numbness in her pinkies for a least a month following.

The news from the actual surgery was better. No tumor blocking the Eustachian tube. No fluid in the other ear. Just the one tube and it went in fine.

Things were quite sore afterwards. She had quite a bit of hearing loss beforehand so things seemed quite loud to her after the tube was put in. I knew that when a tube is put in your ear there can be hypersensitivity in your hearing so it was no surprised. I knew that she would have trouble at school, especially in the lunch room. I wanted to make arrangements for her to eat some place else until her hearing was less sensitive. When the nurse from the hospital called I asked her if she knew how long things would seem extra loud for Sarah. She didn't know and recommended that I send Sarah to school with cotton to stuff in her ear. I then called the doctors office and spoke to the nurse there. She not only didn't know, she was amazed that this was happening. I also checked out the internet and was surprised I couldn't find out a lot of information about it. This is surprising because I know it must happen quite frequently. My husband had tubes when he was a kid and he can remember that his hearing was so sensitive that it actually hurt his ears. I finally gave up and figured we would just deal with however long it took. I want to write what happened in regards to this so that if someone else out there ends up at this website they will know how long to expect things to seem loud. During the first day Sarah's hearing was so sensitive that it did indeed hurt. I had to whisper everything. The sensitivity seemed to ebb and flow a bit, probably due to the fact that there may have been some fluid or blood building up and draining. In turn that would block and unblock the hearing. At least that is my guess. The next day she didn't complain about pain from noise although things were still sore in general. We still were talking quietly to her but not keeping things super quiet. She stayed home from school the second day but went back on the third. I arranged for her to eat in a room next to the nurses room (yes, germ heaven). The fourth day she decided on her own to eat in the lunch room Things still seemed a bit loud to her but she knew that she could plug her ear if it got to be too much. I would say that in about a week her hearing seemed normal to her.

Sunday, January 06, 2008

SARAH'S EAR

Tomorrow Sarah goes to have surgery to have a tube put in her ear. It all started at the end of September when she told me that she was having trouble hearing out of one ear. Like a good mother I ignored her the first time she told me. The second time (a couple weeks later) she told me again and I had her plug her good ear and tell me if she could hear the TV with the bad ear. She couldn't. I'm no Sherlock Holmes so it took me a day to figure out that it could be an ear infection. Last fall she had gotten an ear infection and did not have any pain until the infection was so bad the eardrum was about to burst. I know that it was about to burst because she described the pain as "throbbing" and said it felt like something in her ear was "growing." Now you would think I would be very tuned in to any sort of thing happening with her ears. So although she didn't have any pain, I decided a trip to the pediatrician was in order. Of course she did indeed have an ear infection. Quite bad actually. The course of treatment followed a similar path to last year. It took two or three rounds of progressively stronger antibiotics to cure the infection. Afterwards she had to be on six weeks of maintenance antibiotics because of residual fluid left over in the ear. Last year after the six weeks the fluid was gone but this year the fluid was still there.

Fortunately, we have an Ear, Nose and Throat specialist that we are familiar with (Tom has on going sinus problems and Erin had tubes in her ears when she was younger). I made an appointment and I wasn't surprised when he tested her hearing and she was having trouble hearing with that ear. We already knew this but hey, why not pay for an expensive test to tell us the same thing! Just joking, I'm sure its important to know just how much hearing lose there is just to compare with how much is restored after the tubes. He recommend a tube and said he would check the other ear for fluid during surgery and if some was in there he may put two tubes in. He said that it is common at this age for the adenoids to swell and sometimes block the end of the Eustachian tube so fluid can't drain. The adenoids usually go back down in a year or two. He also said in very rare cases the tube may be blocked by a tumor. He will check during surgery.

Considering Sarah is my little worry wart, she is doing outstanding. She really doesn't seem stressed much at all. I'm sure she will be a little worried tomorrow but so far so good. I am not really worried because we have been through this twice before with Erin. It gets to a point where you just want to get the tube put in so the problem can go away. I am constantly worried that the ear infection will flair up again. It just makes matters worse knowing she doesn't get the pain until its almost too late. She is off the antibiotics now for a couple of weeks so it could come back at any time. It will also be nice that she won't need those antibiotics since they really mess up her digestive system.

LUCKY ERIN

For the past couple of years Erin has complained about pains in her hips and knees. In 7th grade when she started to run cross country, she had to stop for a couple of weeks when her hip became sore. The spring of 7th grade she came home one day and told me that her knee had gotten locked in a bent position when she had tried to straighten it after sitting on her knees during class. It was so painful that she almost passed out. She ended up crying in school, something that she never does. She was finally able to get it unlocked by bending it even more and she felt her knee "slide" back into place. Then this year in 8th grade she had a similar problem where her knee would hurt when she tried to straighten it (one time after sitting with her legs bent up under her). In between these incidents she would often tell me about minor aches and pains. I decided that although I didn't think she had a serious problem, we should take her to an orthopedic doctor.

The visit was definitely worth the $15 copay. He told us that it is very common for adolescent girls to have knees that tend to slide back and forth. He showed us by putting marks on her knee and then moving it from straight to bent. Sure enough her knee slid about a half inch to the outside. Very creepy. He also told us that as her hips widen she would get pain there too. He said some girls suffer much more than she has and it can get very painful. He told us that when she sits on her legs with her knees bent that causes inflammation under the knee cap. Then when she tries to straighten them they move and because of all this inflammation it really hurts. The good thing is that her knees and hips should feel better after adolescence.

He then told her to stand and pointed out that her arch was okay until she stood and then it would collapse. He said that her feet tended to roll in because of the collapsing arch and that puts more stress on the moving knees and growing hips. He recommended that we buy "stability" running sneakers. He gave us a website to go to in order to know which sneakers to buy. When I came home, I checked the sneakers that she had used this year for running and found out that they were stability sneakers. I figured that was why she didn't have a problem while running this year. At the time I had thought it was odd that she didn't complain during the time she was running, all the problems happened at other times of the year. I think we both feel happy that all her problems are just normal things that will eventually get resolved.

FEELING BETTER

I have been feeling better for awhile now but haven't posted because I have been busy with the holidays. The new medication I was on made me get more migraines for the first week but now I have been migraine free since. It took awhile but most of my energy has come back also. I once again have a zest for life. I don't know if I'd call myself a dynamo, but at least I have enough energy to accomplish some things.

Thanksgiving was spent at home. I cooked a turkey with all the usual fixings. Christmas was also spent at home. I kept feeling thankful that I was doing so much better and realizing that I couldn't have survived all the shopping and preparing if I didn't feel so good. It really made me appreciate my health. I happily spent the last few days before Christmas sewing pajamas for the three kids to wear on Christmas Eve. I really love sewing. I was disappointed however, that my sewing kept getting interrupted by phone calls bringing bad news! I guess I was being selfish when I got to the point of wishing people would stop calling. I felt that now that I was finally feeling better, I didn't like hearing all this depressing stuff! I just wanted to enjoy the holidays. I did try to be a good person and give these people time to vent. Things seem to be calmed down now so I think I will get some peace.

Sunday, November 11, 2007

NOT FEELING WELL AND WHINING ABOUT IT

I don't know what it is lately with Oprah but she is apparently on some sort of health kick. I'm sick of Dr. Oz. I don't watch Oprah all the time but it seems that every time I do its Dr. Oz! I guess maybe I'm just experiencing some sour grapes. I have not been healthy lately and no matter what I eat I'm not going to get better. No, even if I drink some green drink made out of celery, cucumbers and spinach I am not going to suddenly feel great. I guess I resent someone telling me that I can "change my genes" if I just do what they recommend. I swear, I heard them say that you can change your genes by following his program.

From what I heard, Oprah shares a problem with me. She has a thyroid problem and went on vacation for a month to help her feel better. Hopefully she is also taking medication for it like I am. The medication keeps me alive! I guess it also makes me feel better but lately I have been having a new problem and don't feel well so I can't really tell.

My problem du jour involves a lot of migraines. Three weeks ago I got the first of seven migraines. Writing it here makes it seem so much better than it actually was. Seven migraines in three weeks, piece of cake. If a person who suffers from migraines reads this, they won't think its a piece of cake. I'm not talking about a person who thinks they suffer from migraines when they really don't. A migraine makes it impossible for me to function. I now have Imitrex to treat the migraines. The Imitrex makes the worse pain go away as long as I don't have to do anything and can spend the day resting. But life goes on and its difficult to just rest for 7 days out of three weeks! Migraines are also exhausting and leave me feeling tired for a day or two so I've pretty much spent the past three weeks barely surviving.

So now I'm trying to figure out why I've been getting migraines. I went back to my Endocrinologist and had more blood work done. I found out that my prolactin (hormone) level is up...again. This could be a possible cause of the headaches. We are treating it with a medication that lists one of the side effects as headaches! Sigh. I also read that you shouldn't take migraine medications at the same time as this new medicine so now I have been battling the migraines without meds. Another sigh.

Did I mention this is all making me grumpy?!?!

I am leaving this alone for now and may post again with a more detailed account of what's going on, you know just for posterity!

Saturday, October 27, 2007

GEOCACHING

Last week I went geocaching for the first time. Basically, geocaching is finding "treasures" hidden by other people by using the coordinates (latitude and longitude) that you can find on a site called geocaching.com. Thomas's 9th grade math teacher (Mr. Math) started doing it about two years ago and now he brings some of his students along with him. He is in the process of turning it into an official school club.

Last Sunday I tagged along on Thomas's first geocaching trip with Mr. Math. I also brought Erin along although I figured Sarah was a little too young to hike the required 6 miles. We met up with Mr. Math at around 9:30 am. He seemed to be bursting out of his skin with excitement. He warned us what to do if we saw a bear (don't run) or even a poisonous snake (stay back). He also said that one of the shorter hikes would bring us through a tunnel and it could get a little tricky. Off we went following behind Mr. Math who was driving a big van that held most of the 10 or so kids that were going.

We ended up in Manunka Chunk, NJ. After checking Mr. Math's GPS unit and talking to some locals we found our way to the start of the hike. This happened to include some very creepy abandoned railroad tunnels that had been carved out of the stone hill. Fortunately, Mr. Math had told us to bring flashlights. We headed down the tunnel that was to the right because Mr. Math warned that the one to the left had some quicksand in it. We occasionally had some water drip on our head as we made it past the big boulders that had fallen from the ceilings. Fortunately, it was only water dropping on our heads and not any rocks! We weaved our way in and out of the puddles until the entire floor was covered in water. No place to go but through it. Finally, we made it through to the other side. Now to look for the geocache! It didn't take us very long to find the green ammo can that was partially covered with a rock. We opened it and saw all the little treasures including a rubber snake. We didn't take anything because the "rules" are that you have to leave something if you take something. We all signed the logbook and turned around to head back. Now, remember, we were with a bunch of 9th graders...."Mr. Math, lets go down the other tunnel!" Now, I think Mr. Math may still be a kid himself because after one feeble "no", he said "what the heck, we can turn around if it gets too bad". So we all headed down the tunnel. The mud quickly became deeper and deeper. When it got up over our shoes, Thomas said "I'm going back". Erin, my more adventurous child decided to keep going. I of course had to accompany Thomas in the other tunnel. Now, my trek down the other tunnel ended up being more creepy than the first time because with only me and Thomas it was much quieter and much darker. As we plugged through the big puddle I heard some splashing and couldn't help but think about those horror movies where something reaches up and pulls you under the water...the others told me that they saw fish and frogs. I couldn't believe there were FISH! They told me that the fish didn't have any eyes - I guess it was too dark to see in there anyways. We got to the end of our tunnel just a bit before the others came out of theirs...they were covered in mud up to their knees! I was just thankful that Erin hadn't lost a sneaker! Everyone was laughing, including Mr. Math. After taking photos of the memory we headed back to the van and our next geocaching stop.

We headed to one of the parking areas at the Delaware Water Gap. We ate our lunch so we would have enough energy for the three mile hike out and three miles back. Consulting his handy dandy GPS Mr. Math led the way. As we came close to the first cache we encountered a bunch of "Muggles". At that time I didn't know what a Muggle was so I stupidly talked to them! I did notice however that Mr. Math was not being his usual friendly self. He quickly pulled us away and in a hushed voice told us that Muggles were people who didn't do geocaching. Now our search would have to be conducted with stealth because if they noticed what we were doing, they might vandalize the cache. Geesh, and to think I had actually spoken to them! We found the cache and decided to head out looking for the next one.

One of the things that Mr. Math told us that he had learned was that it was always best to stay on the trail. If you decided to follow the GPS and go the direct route to a cache you would have to bushwhack and possibly would encounter some impassable terrain. Well, apparently, he didn't learn that lesson very well because off he goes through the bushes. He's quite a fast hiker and as the rest of us struggled to keep up I thought "does he know what he's doing". We encountered more Muggles and he started looking at their map. A topographical map. One that showed that in order to continue in this way we'd have to scale a cliff in order to reach the cache. We weren't exactly lost because we had the GPS, but we weren't exactly going in the right direction either! We decided to go back and drive to a different parking lot where we could attack this from a different direction.

On the way back the kids were excited to see a waterfall. Afterall, it was October and what better month for a swim! They quickly slid down the embankment and waded in. It was not long before we heard a big splash and one of them had "fallen" in. After taking some pictures of what I thought looked a bit like a wet t-shirt contest Mr. Math told them to get their sneakers back on. I saw that we didn't need to climb back up the steep embankment because we could easily pick up the trail by taking a shortcut by the streams edge. Thomas, Erin and I headed off and waited for them on a small wooden bridge. Apparently, Mr. Math didn't check his GPS because he headed back up the steep embankment. They all struggled up after him and then came back down the trail to meet us. I later told Thomas that if he ever goes on another field trip with Mr. Math, he should use his own common sense and keep track of where he is and how to get back! Thomas laughed.

We ended up finding the cache using the other way and continued on to find another cache that was actually hidden at an area visitor's center. We stopped to eat at Wendy's on the way home and everyone happily chatted about what an exciting day it had been. Definitely a fun hobby that we've already continued. Thomas went on another field trip with Mr. Math and we've also found some easier caches on our own. We don't have a GPS unit of our own so we can only search for ones that have more obvious locations. We've brought Sarah with us on our other hunts and she likes it too. I doubt we will ever be as addicted as Mr. Math. He's found over 2000 caches in less than two years! However, I can see this as a fun family thing we will be doing more!

Saturday, October 13, 2007

ENJOYING LIFE

I'm going to talk about the old cliche that mothers lose themselves in motherhood. We tend to be in danger of becoming just someones mother and no longer being ourselves. I'm beginning to realize a side effect of this can be losing our zest for life. I don't really mean being depressed, although that can happen to some people. I mean losing our ability to really enjoy all the little things in life.

The other day I was driving to Thomas and Erin's cross country meet. The meet was almost two hours away and I had already driven there the day before only to be told it was being cancelled due to the thunderstorm that wouldn't let up. So here I was driving that very same long trip again. I had to leave my youngest daughter at home again and she wasn't very happy about me not being with her so I was dealing with that guilt trip. I was also dealing with hunger because I am trying to cut back in order to lose a few pounds I put on because of my under active thyroid. Besides all this I kept thinking about some drama that's been happening on the cross country team because of some nastiness among the girls. I just wish they could all be nice and get along.

As I drove along, probably with a frown on my face, the headache began to creep up my neck threatening to take over my entire head. This is when I started to think about how I don't really enjoy things that I should be enjoying. I like to go to watch my kids run but somehow it becomes an ordeal to just survive. I made myself look at the scenery and hoped the cup of tea I grabbed before I left would help alleviate the headache.

I'd like to end this with a happy ending. I'd like to be able to say that a light bulb went on and I saw how I was wasting my time spinning around in an unhappy vortex. That I've decided to just take the advice of the song "don't worry, be happy". But its not that easy. This motherhood thing is tough.

As I try to type this my daughter Erin is unhappy because she is out of clean cammies and needs one to be able to go to a sleepover tonight.

Those kinds of things are not going away. I still need to keep plugging along making sure all those things that make our lives work get done. I still need to work through the guilt trips.

Now my other daughter Sarah is nagging me for a starburst and we are negotiating the size of the piece of fudge she will have later. Then she wanted to discuss the latest Scholastic Book order. When I snapped, "not now, I'm doing something", she cowered like I'm the meanest mother on earth.

Where was I...

Oh yeah, I'm going to try to enjoy life more. After I make sure everything else is going smoothly. Oh yeah, that's the problem.

Erin is now asking for a clean pillow case.

So what's the answer? When I figure it out I will let you know. In the meantime, just realize that if you sometimes wonder why you don't enjoy things as much as you used to, you are not alone. Its hard for me to enjoy things like I did. A nice vacation? Sounds like a lot of packing for me to do. Going out to eat? Sounds like I'll gain a few more pounds. Spend a night dancing with the girls? The loud music would only make my headache worse, besides I'd have to stay awake past my bedtime. Some alone time without my kids? I'll just miss them!

Do you have the answer?

ADDENDUM: I woke up this morning and read what I had written and posted yesterday. It seems to get a bit muddled, but I think that is perfect. Its perfect because that is what happens in my life. I get everyone wanting something from me and I can never seem to concentrate on one thing. Then it seems like no one is really happy with me. Then I either get a headache or a frown or both. Then I can't really enjoy whatever I'm doing.

By the way, Sarah got to eat the starburst and fudge and later asked for more starburst. When she groaned when I said only one, I told her she could have two. Not long after that she complained of an upset stomach....sigh.