(Good) News!

I have some news guys. Don't worry though, it's all good! I've been doing really well lately. I've had three days this month where my head pain reached above a 4 on the pain scale (on a 1-10 scale), which was early this month. Since then, it has been 21 days straight of my head pain being at a 1 to 2. I haven't felt this good in years! So I think it's time for me to stop dwelling on the pain and start living my life. 

I will still be writing this blog, and I will still be writing about chronic illness. But I will also be writing about my new adventures as I attempt to move forward. I have some exciting things in the works and I can't wait to share them with you. I will also be cutting down on the frequency of my posts, from twice a week (every Wednesday and Sunday), to once a week (every Sunday). Unless, of course, something major happens, in which case I will post as soon as possible. 

I look forward to sharing my journey with you!

Things Not To Say To A Person With Migraines

My mom recently found an article on migraine.com called "18 Things Not To Say To A Person With Migraine". I found it to be very interesting and I thought I'd share a few of the things that really struck a chord with me.

I've had migraines that last for weeks and I've heard of people who've had migraines last even longer. This statement is just plain bullshit.

I can't remember the number of times a doctor has said this to either me or my mom (when talking about me). It disgusts me that medical professionals can be so quick to dismiss what they can't solve as "attention seeking" or depression.

UGH. No. No, I can't work through it. Just like you can't work through a broken leg, you can't work through a migraine. And if you say this to me, I will punch you.

Now, I don't mind if a close friend or family member says this. It's when near strangers, or worse, actual strangers, say it that I get kinda pissed. Because 99.9%of the time, yes, I've tried it. Believe me, I am constantly researching new migraine treatments and if you've heard of it, so have I. 

Those are the four that really stood out to me but the whole article is really good to read if there is someone in your life with migraines. Be sure to check it out!

21 Things (Part 2)

And now for the second half of the 21 Things!

11. Keeping up with your classmates or colleagues can leave you feeling exhausted. 

A few years ago, I was in school to become a sign language interpreter. Every time I had a migraine and missed class, I fell further behind. My anxiety skyrocketed and eventually, I had to withdrawal from the program. I simply couldn't keep up with my classmates and the demands of my professors. 

12. But a good support system can get you through almost anything. 

To quote a previous blog post, "I have friends and family backing me up. They're the reason I made it through my 20s with some sanity. They were the bright spots in my life when everything else seemed dull and grey. They never gave up on me, and for that, I'm eternally grateful. I don't know what I would do without them and I don't intend to find out".

13. Especially when it's your family. 

My family is extremely supportive of me. They never blame me when I'm in pain and can't do something and they do their best to accommodate me and make me comfortable. My mom tries to be there every day when I'm in the hospital and if she can't be there, my dad or my sister come instead. 

14. It's important to celebrate all of your victories, even if they seem small.

I celebrate all of my victories, big or small - getting my Bachelor's degree, restarting this blog, going a week without migraines...

15. It's easy to blame yourself, even though it's not your fault. 

As I mentioned in number 11, I had to drop out of school at one point due to my migraines. I felt like a failure for quite a while. It took a bit of time and a bit of perspective for me to make peace with it. 

16. Your normal may not make sense to others. 

My normal involves heavy duty drugs and uncomfortable procedures. My normal involves more doctors visits in a month than most people have in a year. My normal includes sleep and ice and meditation. My normal isn't your normal. 

17. You can try to hide an illness, but that doesn't mean it goes away. 

I fake it sometimes. I think everyone with chronic pain does. That doesn't mean my pain isn't that bad, it just means whatever else is going on is more important. Eventually, I'll pay the price for ignoring the pain, but it's usually worth it.

18. Keeping up with everyday tasks can be difficult.

Some days, I can't keep up with everyday tasks. Some days, I can only lie in bed. But those tasks will still be waiting for me and they'll be growing day by day until I'm well enough to try and tackle them again. So usually, even if I don't feel that great, I try to get some stuff done every day. 

19. No matter how strong you are, ignorant comments still hurt. 

I'm lucky, because I've encountered very few ignorant comments. But I have had professors doubt me when I ask for accommodations and people look at me funny when I use the elevator for one floor. Even though I'm stronger than I used to be, it still hurts. 

20. Illness can dash your dream of starting a family of your own. 

I'm not looking to start a family right now. But that doesn't mean I won't want one in the future. Unfortunately, a lot of my conditions are genetic. Do I get pregnant, and risk passing these things on to my child? It's a tough question, and one I don't have the answer to. 

21. But, despite all of the challenges, you still manage to come out a stronger, better person.

100% stronger, 100% better!

21 Things (Part 1)

Back in July, there was an article on Buzzfeed called "21 Thngs Only People Living With A Health Problem Know". I thought the article had some good points, so here are the first half of the 21 things listed, with commentary on how it applies to my situation (you can read the original article here).

1. When you're first diagnosed, there's a period of mourning. 

Each new dianosis does cause some mourning. Some caused more than others, but they all meant the same thing - my life is not going to be the one I pictured. It took a long time for me to be ok with that, and, some days, I still resent how different my life is from what I wanted. 

2. Accepting change is often the hardest part.

This rings especially true for me. I had an incredibly hard time coming to terms with the fact that I couldn't do what I used to be able to do anymore. I had to let go of my dreams of stage managing after college. I had to realize that each new treatment was only going to help, not cure. It's a hard pill to swallow (pun intended!). 

3. You never really get used to being sick.

For a while I thought I was getting used to things. Going to doctors, filling out forms, having procedures done; it all became routine. But somewhere inside, I was (and still am) angry and frustrated and not used to things at all. 

4. Not all disabilities are visible. 

If I could shout this from the rooftops, I would. Not a single one of my disabilities is a visible one. But that doesn't mean they aren't real. I've had professors who doubted me when I told them I needed accommodations and felt pressured to stand on crowded trains and buses just because I look healthy. 

5. Years of surgeries and treatments can change how you look at yourself. 

An mentioned in a previous post (which you can find here), I used to be ashamed of my scars. I would wear my hair longer than I liked, just to hide the biggest one on the back of my head. I have scars on my upper arms from PICC lines and scars on my stomach from getting my gallbladder removed. I used to hate all of them and I certainly looked at myself differently because of them. I still look at myself differently, but now it's a positive difference and not a negative one.

6. You often have to pick the lesser of two evils between side effects or treatment options.

One word - ketamine. Other, less extreme, examples of side effects I deal with due to my treatments and medications include sinus pain, anxiety, fatigue, nausea, stomach pain, and headache (yes, my headache medicine had a side effect of headaches), to name a few. 

7. A physical condition affects you mentally, as well as the other way around.

One time, in college, I attended an award ceremony held by the theatre department. There, everyone active in the department was given a silly award based on something memorable about them from the year. I was given the "hypochondriac" award because, apparently, I complained about being in pain too often. For several years after that, I hid my pain and struggled to pretend I was ok. This led to an increase in anxiety and depression, which led to an increase in pain. It was a vicious cycle. I eventually learned it was ok to admit when I was in pain, but only after my pain escalated to the point that I couldn't hide it anymore. 

8. You spend a lot of time waiting. 

Ugh, the waiting. Waiting for appointments. Waiting at appointments. Waiting for treatments. Waiting for pills to start working. Waiting for the pain to go away. Chronic illness = waiting. 

9. And a lot of time taking medications - sometimes for the side effects of your other medications. 

I currently take 7 pills every morning, 1 pill every afternoon, and 1 pill every evening. Also, I take a number of pills or injections as needed for pain, and then, I take pills for the side effects from those pills/injections.

10. Sex can be a real challenge. 

Yeah, so, my mom reads this blog. Hi mom! 

But seriously, I'm sure all of you can imagine the difficulties things like joint pain and headaches can bring to sex, not to mention anxiety/depression and medication side effects like nausea. 

Coming soon - 21 Things (Part 2)

Origins - Part Seven (or "The Time I Sneezed On My Doctor")

We've pretty much caught up to the present when it comes to the Origins series, which means this will be the last of those posts. As we covered in previous posts, I am currently going to Jefferson Headache Center and I'm on a combination of medications and Botox. However I still felt like there was more I could do to get my migraines and headaches under control. Luckily for me, my mom was on the case.

Unbeknownst to me, my mom had been researching treatments for chronic migraines and headaches. And she stumbled across one that might work for me - Sphenopaletine Ganglion blocks (or SPG blocks). An SPG block is basically introducing lidocaine to the Sphenopaletine Ganglion nerve, which resides in your naval cavity. SPG blocks have been around for a while but they used to be very painful (using a needle through the roof of your mouth) or inaccurate (using a long cotton swab to place the medicine up your nose). More recently, however, a new procedure has been introduced. It uses a catheter placed up the nose (with or without fluoroscope) to deliver the lidocaine directly to the nerve. Obviously, this tends to be more successful when done under fluoroscope. 

So when my mom told me about it, I was interested I trying it out. She found a company that specializes in the catheter used for the new procedure and asked them if there were any doctors in the area that I could see. The first one I went to see didn't go well. When I arrived, the nurse informed me I was supposed to bring any recent scans I've had done. When I informed her that I had none with me and no one told me about them, she insisted that I had to have known, because she makes all the calls and she always tells people to bring scans. Since the doctor wouldn't see me without scans, I left. I was very put off by the receptionist's attitude and didn't want to return to that practice. 

After that disappointment, my mom located a different doctor, quite a bit further away from us. This would be Dr. B, with Fox Chase Pain Management all the way out in Trevose, PA. Visiting him was much more pleasant. His receptionists and nurses were kind, and he was wonderful. He took the time to answer all of my questions and agreed to try an SPG block. He did warn me that SPG blocks are only known to help with pain in the forehead and behind the eyes. While I do have pain in other areas of my head, the worst is in my forehead and behind my eyes, so I thought it was a good idea to try anyway. 

Getting an SPG block done under fluoroscope and with a catheter isn't terribly painful, but nor is it terribly pleasant. I was able to eat a small breakfast and take my medicine the morning of because this procedure isn't done under anesthesia. When I arrived for the block at the surgical center, I signed a bunch of forms and then waited to be called. When I was called, I was asked to give a urine sample, and then change out of all my clothing except underwear and put on a gown. I then had the option of sitting or laying on a gurney in a curtained off cubicle. Eventually, a nurse came and wheeled my gurney into the OR. I then had to move onto the OR bed, which is either tilted so your head is lower than your feet, or has pillows or towels to place under your shoulders to tilt your head back. 

Dr. B, who does the procedure under fluoroscope, inserted a catheter up my nose and sprayed dye inside my nasal cavity to detect where the medicine would land. If the dye doesn't show itself as landing on the sphenopaletine ganglion, then he would attempt to maneuver the catheter and spray dye again. This is the uncomfortable part, because the catheter usually ends up touching the sensitive insides of the nose. This is also the part where I had a massive sneezing fit and proceeded to sneeze all over poor Dr. B. Luckily, he has a sense of humor and took the whole thing in stride. 

A word of warning - the dye used for this procedure will drip down your throat and, while it doesn't necessarily taste that bad, it is thick and may cause mild choking. There should be a nurse standing by with apple juice, or something similar, to help you wash it down.

Once the dye shows it is reaching the sphenopaletine ganglion, Dr. B replaced the dye with lidocaine. It will be sprayed in the same manner as the dye, but the lidocaine has a bitter taste. Once again, apple juice will be your best friend!  

The whole thing is then repeated in the other nostril. After it was done, I needed to stay lying with my head back for about 5 minutes. Then, I was wheeled to a recovery room and given more apple juice.  Once the nurses were sure I was able to stand on my own with no dizziness, I was allowed to dress and leave. 

I had some minor sinus pain for a few days following the procedure, and after that - relief!  It really does eliminate (or at least lessen) the pain in my forehead and behind my eyes. I can tell when it's starting to wear off and, after a few more SPG blocks, discovered a pattern. It would begin to wear off after approximately 3 months (the length of time it lasts varies from person to person). So now, every 3 months, I make a trip to Trevose, PA and get another SPG block. I am very pleased with how this treatment is working for me and would definitely suggest trying it at least once to anyone who suffers from pain in the forehead and behind eyes.

Origins - Part Six (or "Ketamine!")

One year, during the winter, I had a really tough time. I tried both infusion and inpatient treatments, and neither worked. Dr. N informed me that there was a trial being conducted to see how headache patients reacted to treatment with ketamine. Since so far the results had been good, I decided to give it a try. I soon regretted my decision.

It started out fine. I was admitted to the Jefferson Gibbon building and set up in a room. I don't remember much of what occurred just before and during my stay, however. Ketamine is a very strong drug and, as it turns out, I can't handle it very well. It began with some mild hallucinations. That wasn't too bad, because it was common for me to have mild hallucinations during my stays in Methodist. However, as the amount of ketamine I received was increased, the hallucinations became more vivid and frightening. I don't remember most of them, but there are two that I do recall - that a pair of dragons were flying over my bed battling each other (which wasn't so bad) and that a very creepy doll was sitting in the corner of my room staring at me (I was not a fan of that one). 

Shortly after the hallucinations increased, I began vomiting. Constantly. Every time I ate, I threw up. It was extremely unpleasant. They tried turning down the ketamine for a while, which worked, but as soon as they turned it back up, I couldn't hold down any food. 

The last straw was when I became depressed. I must admit, this part is difficult to talk about. A couple of days of vivid hallucinations and constant vomiting would cause anyone to be a bit depressed, but this was extreme. I was crying inconsolably and I kept telling my mom I didn't see the point in living and that I had no purpose in life. A nurse was placed in my room to monitor me and make sure I didn't hurt myself. 

I do, in fact, suffer from depression. I'm not afraid to admit it. But I am not suicidal. So it was obvious to my mom that, while what I was saying was distressing, it wasn't really me talking. It was the ketamine. Unfortunately, that didn't make it any less real. It was a very scary time and I hope I never have to feel that way again. 

To be fair, ketamine has worked for many people, including another patient who was there at the same time as me. But, I want anyone who is considering ketamine treatment to be prepared for the possible side effects. Like I said, it is a very strong drug, and even low doses can mess with you. I highly suggest that if you are considering ketamine treatment, that you have someone there willing to be your advocate, for those (possible) times that you may be too sick or too high to advocate for yourself. I was very fortunate to have my mom there with me, although I am sorry she had to witness my meltdown. It's not something I would have wanted anyone to witness. 

That's it for Part 6. Coming soon, Origins Part 7 (or "The Time I Sneezed On My Doctor")! I promise, it will be much more upbeat (if you couldn't tell from the title). 

Origins - Part Five (or "The One With All The Diagnoses")

My return to Jefferson Headache Center was marked with a ton of paperwork. Just like the first time I had gone, I was required to fill out sheet after sheet of paperwork detailing my pain, my medical history, my medications, and my psychological state. I met with a psychologist (Dr. K) and the person who would become my new neurologist, Dr. N.

Once all the routine questions were out of the way, Dr. N began telling me what Jefferson could do to help me. Unlike Johns Hopkins (to be fair, Johns Hopkins may have changed since I've been there, but at the time I left, these options were not given to me), Jefferson taught patients how to self inject certain medications, including DHE and Toradol. They also offered 3 day outpatient infusions (posts on my infusions can be found here, here, and here) and inpatient stays in Methodist (posts on Methodist can be found here, here, here, here, and here). I was given new meds to try, including the injectables and told to call the nurse's line if I had any issues (the nurse's line is open Monday through Friday from 9 am to 12 pm. You leave a message and they return your call within 72 hours). 

After a few visits, Dr. N reccommended I try Botox to help reduce the frequency and/or severity of my migraines. The first time I tried it, the injections were quite painful and I didn't notice any significant change. Dr. N told me it could take up to three tries to notice a difference, so I decided to try the three times. I went every three months and after the third round, I began to notice a difference. That was over three years ago, and not only are the shots less painful now that I'm used to them, but I can tell about two weeks before I'm due for my next round that it's beginning to wear off. 

Also during this time, I was given a tilt table test and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). During one of my stays in Methodist I developed a blood clot and was later disagnosed with Factor V Leiden, a blood clotting disorder. And after that, I was diagnosed with Fibromyalgia during a visit to my neurologist. Which means, all told, I have 12 different conditions, 6 of which are considered common (fibromyalgia, TMD, chronic migraines, anxiety, depression, and eczema), 5 of which are considered rare (Postural Orthostatic Tachycardia, Ehlers-Danlos Syndrome, Intracranial Hypertension, Factor V Leiden, and Halo Nevi), and 1 that some believe is rare and others believe is not (Chiari Malformation). 

Coming Soon - Origins - Part Six!