I have been thinking about posting for way too long. I was just hoping so
much that everything was in the past and I wanted things to be better and
something to finally work. I didn't have the heart to post when things weren't
"perfect". Everybody wants to read about a happy ending, and I didn't have one
to give them.


I decided to continue writing, not so much anymore to keep people up to date on
myself, but possibly to help somebody that may be going through the same thing.

Just a few quick bullets to bring this blog up to date, then I will expound on
the details further:

• Continued to have left sided weakness and numbness
• Right hip pain from being off balance because of the "complex migraines"
• Developed lymphedema in my left arm
• Came out of menopause
• Continued abdominal bloating

It has been a rough few months. To make a long boring story very short, I
wasn't able to stay on the steroids, and by the third day it seemed to cause
more problems than help. I established with a local PCP. She put me on
Amitriptylene to counter the steroid symptoms. I went back to the Neurology
Clinic in Gilbert for a follow-up and saw the P.A.. It was a complete waste of
time. She told me to continue to stay on the Amitriptylene and increase the
dosage. She also gave me a headache journal to fill out. So basically, I drove
600 miles for absolutely nothing. The biggest problem was that I didn't see the
same doctor, and although the PA was nice, she really didn't offer me anything.
If I were to fill out the journal, it would either be 100 pages long with
constant (non-pain) symptoms or it would be blank since I rarely have
"headaches", I have constant numbness and weakness. And I didn't want to be on
medication for 6 months! I really think that the first physician that I saw
probably could have helped eventually, but since I wouldn't be seeing him for
all the visits I cancelled my follow up with the office, and I won't be going
back. At this point I was close to giving up and "living with it". The only
problem is, that my family has to live with me.


My left side was weak, and I was compensating with my right side, so my right
hip was extremely sore. If I sat down for more than five minutes, I could
barely walk when I got up. I was still having numbness in my jaw and my left
foot. I was still taking the Amitriptylene, which didn't seem to be helping, it
only made me really "draggy" during the day.


With all this going on, I quit swimming because I didn't have the energy to get
up in the morning. So, things continued to spiral down. If you really stop to
think about cause and effect, everything you do has some impact on something
else. It is only when you finally "crash" that you realize where it all
started.


....and things started to look brighter.


I quit taking the meds and tried to get back to my "baseline", which wasn't
saying much, but it was better than what I was dealing with.


My friend, who does Cranial-Sacral therapy came down from Phoenix for
Thanksgiving. I agreed to have her do a treatment on me. It was the first time
I had ever done anything like that. I just really didn't see how it could help.
But it did!!!! I just wish I had know this months ago. The numbness in my jaw
went away, the numbness in my left foot and hand decreased, and my right hip
didn't hurt. I have had a couple other treatments from her since then, and so
far, she has been the only one that has truly helped.

So, that part is much better, but I did develop lymphedema in my left arm. That is the side that had the lymph nodes removed. It wasn't doing a lot of swelling, but it would get very sore, and I could feel the lymph nodes. I think I have had it for about a year, but when I asked the doctors about it, they didn't seem to know what caused it. I am going to a lymphedema specialist in town, and that has helped tremendously. She showed me how to do manual lymph draining and use Kinesio Tape (amazing stuff by the way) and I got my lymphedema sleeve last week. As long as I keep up with the manual lymph drainage, I am fine.

I think I will save more for a later date. I am tired from all this writing.

...And I say Yah, Yah, Yaaaaah!!!!

Could it possibly be true? Can it really be this easy? I sure [insert other words here] hope so. I was starting to feel a little hopeless. One of my "friends" stated, "Maybe it is something you are going to have to live with." That statement about put me over the edge and made me want to really give up. It isn't like living with just a crooked smile and swimming like Nemo. It is the entire "me" that the migraines have changed. It has altered me waking up with new ideas and wanting to complete them. It changed me being the extra obnoxious mom and friend (that was before by the way). As much as my friends and family say they don't miss that, I bet they do. It was all a part of who I was, or should be, instead of a walking zombie.

I ended up going to a headache specialist in Phoenix yesterday. The first doctor at Barrows was at a loss for what to do for me, and wanted to send me a specialist that only dealt with headaches. I called the two doctors that he referred me to. The first doctor was at Mayo, and they don't take our insurance. The second doctor had a clinic near Glendale, so I called and made an appointment with Dr. H, the O.D. for October 1. They had asked if I wanted to be on the cancellation list in case anything else came up earlier, and of course I told them yes. I got a call from them on Tuesday, and they had a morning cancellation for the next day with my previously scheduled doctor, and an afternoon, cancellation with another doctor in the office. I asked her briefly about the other doctor, she just said that the entire office only dealt with headaches and he was qualified to work with me. Okay, I am desperate, and hopefully there is a God working for me, so I took the afternoon appointment. I could have taken the morning appointment, but I would have to get Mike up really early... so I took the afternoon option.

The doctor (Dr. F)was very pleasant and thorough. He had a great sense of humor. You know, so far the best doctors that I have dealt with have an amazing sense of humor. It probably rubs some patients the wrong way, but I find it refreshing. It makes me feel less like a piece of meat. Dr. F came in, shook our hand and said, "Okay, I was looking over your chart...". This is the part where I usually repeat everything that I have written on the chart, but this time was actually a little different. As he is flipping through the chart, he says "It looks like you have had a few bad years. Did you check to see if your warranty is up?" This comment was received by a raised eyebrow and a smirk from Mike and a crooked smile from me. I responded, "It kind of looks that way, doesn't it". From there he asked a few questions to clarify what was on the chart, but didn't have me tell him word for word what I had already written or what the other doctors had documented. I am glad that I decided not to put "I am suicidal and I carry a gun in my purse" in the comments section. I have thought about doing that just to see if they really know how to read.

We continued the appointment and physical exam. That was the first really complete physical exam I have had since the ER doctor checked me. He explained a few options that normally help with complicated migraines. They start with one of the least invasive and go from there. I was thinking there was nothing else to do, but they have other options, which was nice to hear. For starters, he wanted to try to get rid of the migraines by putting me on a 10 day regime of steroids. That is supposed to break the cycle and hopefully take care of the neuropathy (my crooked smile among other things).

I took the first Prednisone last night before I went to bed. I recall that when I took it for the chemo, it made me a little light headed and gave me a "stuffy head feeling". I was also prescribed a "psycho" drug to help me sleep, because the steroid tends to keep you awake. I love how the pharmacist looked at me when he was explaining that one in his "Indian accent", "Okaeee, theese wun is wheen yor mude eez not so gude" as he so gently put it. I almost started laughing, but that would just prove that I really am psychotic.

I did wake up with a complete smile, that hasn't faded, and my brain is going a million miles an hour with new ideas, I had the urge to blog, run, swim and do cartwheels (okay maybe cartwheels is pushing it), but I do feel more like my normal "self". The steroids are causing me to feel a little "fuzzy" and stuffy, and the "psyco" drugs definitely helped me sleep. I didn't wake up until 5am. I had some crazy dreams, but I am just happy that I woke up feeling like I actually slept. The neuropathy has faded to almost nothing. I haven't done any physical activity yet. That will be the true test to see if the numbness returns.

Well, I really have to get back to work and write down all my ideas before they slip away.

BTW-I forgot to mention that it was EXACTLY one year ago that I finished my chemo.

It has been awhile..

I really haven't had the urge to write. It isn't really the "energy" to write, it is lack of desire.

The visit with the neurologist went well. He was very nice and spent almost an hour with Mike and I discussing my symptoms and history. He came to the conclusion that it was caused by "complicated migraines". He said that they don't always have to be painful (mine weren't) and they can mimic TIA like symptoms, which mine did. He gave me a prescription for an antihistamine that he said would take care of the symptoms immediately if they were caused by the complicated migraines.

I picked up the prescription in Phoenix and started taking it that evening. I didn't really notice a whole lot of difference in my left sided weakness, but the medication caused me to have severe headaches, so by day 4 I had to quit taking the medication. Isn't it ironic that I was given medication to combat "complicated migraines" that I didn't have any pain with and it caused headaches. It would almost make me laugh.... but it doesn't.

So I called the doctor in Phoenix and told the nurse that the medication didn't work. I wasn't too concerned, but then I did start having headaches along with the symptoms. I never heard back from them, so I called again. For some reason, the doctor didn't get the message and so nobody ever got back to me. They then gave me a prescription for Topamax, which I started taking and immediately felt better the next day. With Topamax, I started out with 1/2 pill, then was supposed to work up to 3 pill per day by increasing the dosage each week.

I couldn't even believe the difference the Topamax made. I was really excited that something finally worked. I felt almost 100 percent better, minus a few minor side effects. My smile was normal for the first time in months and I felt like my brain was functioning like it was supposed to. When I get excited, I always feel like dancing or doing cartwheels. I really felt that good, but the fourth time I took the medication, I had a "minor" allergic reaction. I was having trouble breathing, tremors, my temp went to 96.6 degrees and I was having difficulty speaking. I say it is "minor" because I could still breath, walk and talk (kind of). That reaction passed, but I had to stop the medication.

Anyway, I am pretty much back where I started. I still have a lopsided smile and I stumble occasionally. I only have painful headaches sometimes, but I do find it hard to concentrate and I have memory lapses. I know, everybody says, "that is what you get when you get old", but it is a little more than that.

So, here I am again, waiting to hear back from the doctor.

Finally...

After several calls and lack of calls from the office staff here in town, I finally have a follow up appointment with the neurologist at Barrows in Phoenix. The appointment isn't until July 21st, but I guess that is the best they can do. It normally takes 2 months.

The new seizure meds, Lyrica, I was put on make me feel like a complete zombie. They don't make the symptoms go away, they just make me not care whether or not I am having any. "Good drugs man...."

The doctor here says it may be a "complicated migraine". If that is true, why did it come on suddenly? I don't buy it. I have never had a migraine in my life, and rarely get headaches. It just seems like the "easy" answer to something more complicated.

Follow up

Well, it is confirmed that there is definitely "nothing going on" in my brain. The EEG didn't show anything abnormal,so that rules out epilepsy. I am still not any closer to getting an answer, just ruling out one thing at a time.

I have been having problems with hip/back pain and my asthma, so the doctor changed my meds. I am still having left sided weakness and started having problems with the right side of my face today. My smile is really wacky now.

The neurologist in Phoenix is out of the office this week, so the doctor here was going to see about a neurologist in Vegas.

Still waiting....

EEG

I had the EEG done on Wednesday. I have a follow up appointment on Monday to get the results. I wasn't scheduled to see the doctor on Wednesday when I had the EEG, but I met him in the hallway after I came out of the EEG room. He asked how I was doing and I told him that I was still having several episodes. He asked if I had made an appointment with a specialist. I informed him that the neurologist at Barrows wouldn't set up an appointment until they reviewed my chart, and that it may take awhile unless my current doctor thought it was necessary to expedite the appointment. He told me to have my hospital chart over-nighted to the specialist at Barrows and he would call them to try to get me in next week.

I haven't heard from the neurologist at Barrows yet, but I intend to give them a call today to see if they received my chart.

The episodes are quite frequent, but not debilitating. I have a crooked smile and my balance is off. I have been more tired than usual, but that may have to do with the medication. Yesterday I also had an asthma attack along with one of the more severe episodes. I haven't had problems with my asthma in several years, so I no longer have an inhaler. Mike was ready to take me to the ER, but I "breathed" through it. I suppose I should go get an inhaler just in case it happens again. I figure it has something to do with the other meds that I am on.... this is a classic case of piling on more meds to treat symptoms caused by other meds.

Have you ever gone to bed wondering if you will wake up the next morning?

Are you Kidding me?!!!

I was so sure that everybody was correct when they kept telling me after my cancer was diagnosed... "a year from now you will have perfect boobs and this will all be behind you." Yeah right! I almost believed it.

I haven't blogged since my life has been so blissfully boring! Boring is good for me, bad for blogging. I started on Facebook just to post day to day "blah" stuff. I bet you already guessed that my boring life has produced a minor twist. My mom said, "I keep getting calls from everybody, maybe you should start blogging again." So here I am...

I was admitted to the hospital Monday, June 22 for left sided weakness. And this is how the story goes...
I was at a swim meet on Sunday and had some numbness in my left foot and I was a little tired. I really didn't think too much about it. I figured I had been out in the sun all day, and I was wearing sandals that I don't usually wear.I went to bed early on Sunday, and I woke up at around 4 a.m. on Monday. I did my usual routine, which is make coffee and go out to my shop to do some work. I messed around on the computer for a little bit, then started working on my decals around 5 a.m.. As I was working, I felt a twitch in my left eye and noticed that my jaw felt numb. I got up and looked in the mirror and noticed that they left side of my face was drooping. I went and woke up Mike. By the time I woke him up, it was starting to go away and my smile was returning to normal. I wasn't quite sure that I wanted to rush to the Emergency Room, so I called a friend that is an ER doctor and asked his opinion. He asked me a few questions and told me that I should be seen that day. Shortly after I got off the phone with him, I had another episode of left sided facial droop. This time Mike was awake and noticed it. We decided to head to the ER.

I checked into the ER around 6 a.m. and they actually got me in fairly quickly. Luckily they weren't too busy. The doctor did an assessment and noticed a left side deficit. He ordered a CT, MRI, EKG, Carotid Dopler, Chest X-ray and bloodwork. It all came back negative, so they admitted me to hospital for observation. They assumed I had a TIA. I was admitted around 9 a.m. to the 3rd floor. The ER doctor had ordered 4 baby aspirin to decrease my chances of having a full stroke. The only problem is that I never got the aspirin. The ER nurse had documented that I got the aspirin, but it was never given to me. I can kind of understand them not believing me, but Mike was with me the entire time and knew that I never got any medication in the ER. So, I never did get the 4 aspirin. I was admitted by the Hospitalist, who was very pleasant, but was a bumbling idiot. I couldn't believe he was actually an M.D.. Maybe he would have done better if he would have stayed at a Holiday Inn Express. They did notify the neurologist for a consult.

They ordered numerous tests, including a complete cardiology work up, checked my thyroid. I had another CT and a TEE, which checks for clots or holes in the heart. Everything came up negative. I was released on Tuesday and put on blood thinning meds, anti-seizure medication and another med for cholesterol.

I am still having periods of left side weakness and facial droop. I am going for an EEG today and will be following up with a specialist in Phoenix. Hopefully I will have some answers soon.