In Austin, Texas

I have to apologize to anyone and everyone who ever stops by here and/or comments on my blog. For some reason, I was not getting notifications as to when someone would leave a comment so I just saw that there was about 7 comments from 2013 - I am so very sorry. I hate it when people don't get back to me and I'm sorry for doing that to you. I am going to work on switching addressing in which my notifications go to and hope that helps. I also hope to blog more once my life settles down a bit. I feel as if there are many plates spinning in the air all at once. The good thing is, my health is good. We (my husband and I) are on vacation in Austin, Texas right now - hello! first time on an airplane since 1998! I had a MAJOR anxiety attack! Thank god I have an awesome fibro dr who I was able to just be like "listen I don't think I'll freak (so wrong) but just in case can I have something just in case for the flight to and from" SOOOOO glad I did that!!!!!! Landing was fine, take off was DRAMA CITY! Oh man I felt like one of those people who end up on youtube video's! LOL Anyway - I promise - now that my health is more regular (Migraines are like zip - maybe 3 in a bad month) Fibromyalgia is better in summer (the hotter the better for me, I feel much better in heat) - So hopefully I'll get back to blogging and be able to get back into talking with all of you. Again I am so sorry about the comments, I will change my notifications address and hopefully that will fix the issue. Thanks to all who are still reading. I am working out the kinks and hope to get back to this on a more normal basis and change my notifications.

Comments....

I have not blogged in a long ass time, I know - I am thinking I am going to get back into it. Just not today - today is try like hell to get your taxes done day. Anyway, I just wanted anyone who may still happen by here to know that I was not ignoring your comments - I just saw them today! I am supposed to get an email notification when I get one and I have not been getting them because I had like 30 comments and no emails! So, I am very sorry if you commented and were waiting to see it here, they are all up now. I am very happy to hear about the person who went and got a blood patch after a LP all because she read my post here! That really ment a lot to me - well, it ment more that she went and got help and felt better! To this day I think that was the worst pain ever! I have a bunch of blog ideas, plus I may start a new one on make-up and skin care too - but that would require me to actually be alive, awake and alert enough to use the computer. We shall see. My Fibro has been so outta control that I can hardly funtion lately....and the past two weeks I have been Migraining every day because of the weather. Just a sucky month I guess. Well that's about it for now. My wrist is starting to hurt and I have not even done what I came on here to do yet. I hope you are all well and living as good as you can. I hope to 'see' you all soon. Much love! Eileen

When Does It End?

I have been away for too long again, I know. It just feels like every time I get ahead, I end up two steps behind.

I was scheduled for shoulder surgery on 5/28. Unfortunately it did not go as planned. I went in to the OR, had the 1st dose of drugs to just sedate me so that I would be less nervous I guess. After that, I know nothing. I woke up to find 1. my surgery was not done and 2. I know have a heart condition!

While getting ready in the OR, they hooked me up to the monitors and my heart was beating at 150 bpm (beats per minute). The normal heart beat is around 70 bpm so you can see why they were concerned! I went into Atrial Fibrillation or "A-Fib". Never a dull moment when I'm around I guess!

So the cardiologist explains what is going on and tells me what the deal is. He was going to admit me to spend the night at lovely St. Clare's Dover Campus when my heart, on it's own, returned to normal rhythm.

The next day I went into the Cardiologist office and had an Echo. The Echo showed that I have a spasm in my inner heart wall - fun for me! He seemed concerned, but not overly freaked. He showed me the spasm which, of course, caused me to freak out!

Long story short, I rescheduled my surgery for 2 weeks later and everything went fine. The doctors had to keep administering Cardizem during my procedure to keep my heart rate down. I am now on this medication daily....along with a baby aspirin.

I have seen the cardiologist since and have also done a halter heart monitor. We are waiting for the results of that before we move forward. It seems that my heart beats at around 100-120 bpms on a regular. My question is why doesn't that help me lose weight??!!??

On to other things....I go back to see Dr. Young at the Jefferson Headache Center on Monday. I really don't know of too many people who look forward to having their head jabbed with needles and numbed out, but for those with Migraine who have experienced the joys of a Nerve Block, you know what I mean! My mother is coming with me for company. This will be the first time she gets to see up close and personal what I go through with my Migraine Disease. How come now at 33 is this the first time she will see this? Well, because I was diagnosed at 24 and have not lived with her since being diagnoses. Yes, she has seen me in pain, taking triptans and staying in bed for days on end, but I don't know if it ever fully hit her how bad I really am. I guess part of me wants her to fully see what goes on at my appointments and hear me talk to a medical professional about my illnesses. I think this may give her the jolt she needs to realize how serious this really is! Throw in the Fibromyalgia and heart condition and you have one sick daughter!

Due to the shoulder surgery, I have been on disability since May - and - still waiting for my checks to come in! I have to say that my head has been much better since not working in the psycho drama that I was working in. I have had no Tension-Type Headaches since leaving my job. I am worried that going back will be detrimental to my health and I'm really scared to do so. I really feel that my current job contributed to not only my heart condition (being under constant stress) but also my daily TTH and Migraines.

Although the Migraines and Tension Headaches are not as bad, the Fibromyalgia is cranking at full speed. I have constant pain in my neck, shoulders, wrists, hands, ankles, hips, and legs. Yeah, that pretty much covers it! I find that especially with the current 90 plus temps, that the Fibro and heart issues are almost unbearable. I really don't know how I can go back to work feeling this all over pain - not to mention hardly even being able to walk 50 feet without being exhausted from my heart. I guess time will tell.

I really do hope to get to blog more often. I think I got so used to not being able to use the computer at work, that I have forgotten all the things I used to do. Hopefully that will change and I will come back here with an update after Philly.

Until then - stay cool and pain free!

So much to say....

I have not posted here in such a long time! I have so much to catch up on and still don't really have the time right now. The best thing that has happened recently is that I got in to see Dr. Young at the Jefferson Headache Center in Philadelphia!!! He is amazing! I had a nerve block and trigger point injections. They worked better than I thought but are starting to wear off now.

On the down side, I was diagnosed with Fibromyalgia back in February so that is not fun, but at least now I know what the deal is and why I'm always in pain (other than just my brain).

I am going to need to have some shoulder surgery soon - that should be exciting. I also need to set up time to go back to Jefferson for the IV Therapy clinic. Dr. Young thinks it would be very beneficial.

I hope to get back on here and write more soon. I just don't have enough hours in the day with my job and my health as of late.

Hope everyone out there is doing well!!!

Lumbar Puncture - the good, the bad, and the very painful

It's been a month since I had my lumbar puncture. It has taken me a while to feel "normal" again - although my normal and a healthy persons normal are two very different things.

I wanted to get my experience about my LP out there because if one other person can learn from my experience, then I feel like my experience was worth it.

Let me start by saying the lumbar puncture itself went great. I didn't feel a thing. It really was one of the easiest tests I've ever had done. I would even say it was easier than a CT, just because I didn't have to take off all my jewelery. I was having a lumbar puncture to rule out Pseudotumor Cerebri, aka, Idiopathic Intracranial Hypertension. IIH is increased spinal fluid that can trigger Migraines. I had quite a few of the symptoms: no trigger Migraines, tinnitus (ringing in the ears), headaches or Migraines upon waking, preventives that did not work, or worked for a short time, neck and shoulder pain, pain behind the eyes and nausea.

So I have the LP which, as I stated went very easy. Actually, the test itself was fantastic. I get back to my room feeling great. I'm laying down, which I was told I would have to do for at least two hours until they would release me (I did this as an outpatient in a hospital, which is where most of these tests are done).

I was feeling fine for the first hour or so.....then the pain started. The head pain was not like my typical Migraine or Tension Headache pain, this was different. It felt like the cloggy feeling you may experence when in a plane - but to the extreme. I let the nurse know and she wanted to give my Tylenol - yeah, Tylenol. I don't even take that for a TTH, much less THIS! I thought it would pass or not get worse. The nurse left and I took a Vicoprofen that I had with me.

On the way home (the hospital I went to was about 45 mins away from my house), the pain increased. I had Shawn stop for a bagel and some tea, so I could at least eat for the first time that day (it was about 1 or 2 pm by then) and also have some caffiene. My doctor had said caffiene may help with the spinal headache.

I rested the rest of the day - the Vicoprofen did nothing. The next day, Saturday, I felt a little bit better - at least for a while. By Sunday, I could not lift my head off the pillow without getting sick. The pain in the back of my neck and head upon standing was so intense, I would vomit almost immediately.

I spoke with a friend of mine who I knew had some difficulties with this test and she said go to the ER and get a blood patch. I called my doctors office and spoke with the covering doctor, who said my doctor would be doing rounds in the morning, and if I could wait, go to the ER first thing Monday.

Monday morning we were back at the hospital. I could hardly stand or walk and the only way I felt halfway comfortable was laying down flat.

The doctors took me in right away - pretty much as soon as I was checked in. I got some Zofran to start with an IV and went up to have the blood patch. For those who don't know, a blood patch is when they go back into the spine, just above where the LP was done, and inject your own fresh blood back into your spine to help stop the spinal fluid from leaking. Most of the time your body will heal quickly and close over the hole from the LP, but if not, a blood patch can fix that.

I was told to sit upright with my legs hanging over the bed. I crouched over and hugged a pillow as the doctor numbed the area with lidocane. By now, I had an IV in my right arm and the doctor was taking blood from the side of my left arm. He injected 20 CC's of my blood into my spine and said I may feel pressure when he does this. I felt the pressure, but also relief. My head was feeling better, or so I thought.

Again, I though I was "good to go". I returned to the ER - now taking 2 full bags of saline in less than an hour and a half. I was so dehydrated from getting sick all day, every day, for the last 2 days. I went home and rested thinking I would go to work on Tuesday and everything would be fine. Wishful thinking!

I went to work on Tuesday - even drove myself! I felt ok in the morning, but by about 11 a.m. I could tell I should not have attempted working. I was bent over my desk between trips to the bathroom to get sick. I called Shawn to pick me up. I stayed home on Wednesday and again thought I was o.k. to return to work on Thursday. Wrong again! I had called my doctor during all of this - and spoke with a covering physician. I did speak with my doctor on Thursday, and by that time, I was out of my mind. I was hysterical and didn't know what to do. She told me "go home, stay in bed, and don't even think of moving until at least Monday". And that is what I did.

My doctor also called in a prescription of Prednisone, to help get rid of the spinal headache. I was to be on a Prednisone taper for about 16 days, taking one less pill every four days until there were none left.

By about Wednesday that week, a week and a half after my lumbar puncture, I was finally starting to feel like I was human again.

I wanted to get my story out there to let anyone who has similar side effects know - if you feel as bad as I did after your LP, call your doctor and get a blood patch. Don't wait like I did. I wish I had known earlier, I could have saved myself a lot of pain and money by acting earlier than I did.

So I'm sure you want to know the result of my LP as well, right?

As it turns out, I don't have Pseudotumor Cerebri. My opening pressure during my LP was only 14. Even with the Diamox that I take, that is on the normal side. This was a disappointment to me at first. I thought that having IIH that it would answer so many questions about my Migraine Disease. I thought if I only had IIH, then I can finally treat my Migraines in a different way and know what some of the cause of my Migraines were.

Although I am happy that I don't have IIH, I knew I had to have this test to know for sure if I did or not. The only way to be tested for IIH is with a lumbar puncture.

I do not regret having this done. I would do it again if I had to, but maybe would be quicker and realizing my symptoms were not the norm for the test. Only about 10% of patients who have an LP get a spinal headache. It really was hell for a week and a half, but at least now I know 100% with no question, that I do not have Pseudotumor Cerebri.

30 Things About My Invisible Illness You May Not Know

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:

1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2002? It seems like a life time ago.
3. But I had symptoms since: I was about 13 - I'm 32 now.
4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.
5. Most people assume: that Migraines are "just headaches."
6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights is: insomnia and nausea
10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly
11. Regarding alternative treatments I: have only tried aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!
13. Regarding working and career: it's a challenge every day.
14. People would be surprised to know: I have some sort of pain every day.
15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.
16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.
17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.
18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late
19. It was really hard to have to give up: my former life.
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: probably be too scared to do anything since I would regret it the next day!
22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.
23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"
24. But I love it when people: are willing to learn about the disease instead of judge me unfairly
25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease
27. Something that has surprised me about living with an illness is: how far we have to go
28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.
29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.
30. The fact that you read this list makes me feel: a little less alone

Things A Person With An Invisible Illness Hate To Hear

This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!