Tuesday, December 6, 2016

Anniversaries and Updates


On December 14, 2013 I got a migraine that never went away. I have chronic migraines, cluster headaches and all the migraines in-between. 

It's been one crazy year, my friends. On this anniversary, after rereading my other posts, I'm happy to see this year gone and I don't find much comfort in my future. Hence, why I stopped writing here. At some point your run out of things on the hamster wheel and some things are too personal. However, lets start with the amazing year I had that everyone saw and am so grateful to have had!

So, the Cryoablation on my occipital nerves worked! Which doesn't mean I didn't get migraines half of this year, just not from that locations and they were more "mild". Time to get out of the house and get some epic traveling done. Big points of interest were Monument Valley, Utah, Lake Powell, AZ, Las Cruces, NM, White Sands National Park, NM, Carlsbad Caverns NM, Roswell, Mojave desert, Palm Springs, Chaco Canyon Santa Fe , Taos and Albuquerque NM, Ivins UT, Four Corners, Bryce and Zion National Parks and hitting 6 states in the motor home and saw loads of friends along the way. We also went to Kauai and took my niece to Maui! That was seriously fun! Loads of smaller trips too, Eugene, Or., Santa Cruz (twice), San Francisco, and the Oregon Coast with an older niece (I have them coming out of my ears) which I was able to do on my own! Lastly, we had some visitors this year from Alaska, Hawaii, Eugene and San Fransisco. And, I've lost nearly 30 pounds! That's some year!

Here's the rub....

I was also in the hospital 6 times over the summer, six times. Four of those times were in Stanford, where I either had to fly myself down, or the usual buddy drive. Some of those were trips for another type of treatment they've been trying on me called DHE, it's a drug they infuse into your body. My second trip I was in the hospital for 4 days but there's a national shortage, so that won't happen again anytime soon.

Prior to the Cryoablation in May my migraines were the worst they've been, which is why I had the procedure. We aren't sure the Botox is working anymore or maybe they will work better together. The Cryoablation lasted about 4 months and you have to wait at least 5-6 months and the second Botox in this rotation didn't work at all. Just because I'm not having occipital nerve migraines does not mean I'm not having migraines. I don't count my pain free days anymore but my migraine app can show you I'm still having roughly the same, or a bit less at one point, just not disabling. So disabling for me, is bleeding out of my eyeballs because I can't drive, it gets in my eyes. That's where pain and I stand now. 

Thankfully I feel like I was able to truly enjoy and be in the moment for all of the amazing things that happened this year, despite the pain. The truth is I'm worse, which to me has meant facing the loss of ALL my hopes and dreams for MY future. People forget I used to have a career, I'm not a wifey. I want to see the world, I doubt I'd live through a transatlantic flight or a cruise. I like to have a healthy social life, I may need to move to a bigger town for that anyway. I wanted to grow up to be the opposite of my parents, not become them, workaholic husband and dependent female I'm not saying I can't make new dreams, I'm just saying when you realize that it takes time to process and grieve and then be reborn. I'm still grieving. I don't want platitudes because no one else knows and if they do they feel the same way. 

These are some things I learned this year... big learning year for me
1. No matter what, your oldest friends are still your best friends
2. Say yes
3. let go or set boundaries (both are so hard)
4. I learned what absolute pain is and it broke my heart
5. No one will ever know what you're talking about, ever, until the end of time, when you talk about your migraines, no matter how many times to explain it. Don't talk about it.
6. Don't trust anyone over 16 1/2
7. Always smile, it makes people feel better and it might make you feel better too
8. Avoid stress, don't try to manage it
9. Do things for yourself, without asking permission
10. Radical Acceptance

As a holiday bonus, I'll tell you about my second Cryoablation that I had done about a week ago. I had a different doctor who was great! He pumped up the local anesthesia and the pain I felt was "normal". So we left after 30 minutes, because you're not allowed to leave immediately because of all the meds in your system, and we go to the hotel. I'm walking on the sidewalk and I hit a crack and face planted into the cement. Boom, didn't even put my hands up because I was still drugged. So precise was this fall that I didn't have a scratch! I just went down like a hammer. Of course I had a concussion.. and I hope some of you are laughing.. if you know me you definitely are, because only I could perform such a glorious feat. So Happy Holidays, for my next trick....

Sunday, August 28, 2016

Happy Days


I've been meaning to write about this for a while but I haven't quite known how to work it out from my head to my words. I've been working on it with my therapist and to me it still sounds a little silly but she assures me that other people with Mental Illnesses go through this as well people with Chronic Illnesses so I thought I should make a brief post and see if I got any thoughts from anyone.

For a few years now a truly happy day has been far and few between. I live on small happy moments but I've been working hard to expand those moments to try to have happy days, despite what I might be going though. I feel like I'm getting better at it. When I was going through my manic phase it was so much easier! It was great to feel so awesome. I think I mentioned that that's why people who have Bipolar don't really go to the doctor when they are experiencing a mania because it can feel so good for a while.

After some torturous medication tinkering and finally sleeping after a month I started coming down but continued to have happy days and it freaked me out. Was I still manic? Was it ok for me to feel happy? To someone without Mental Illness this sounds like a woman with too much time on her hands but put yourself in my position. I don't know if I'm really happy or if the disease I have that lies to me is playing more games with my head. I don't know if I'm really happy..... I just wanted to say that again because how terrible is it to not know what happiness can feel like. 

I know what all the bad stuff feels like, I know what calmness or peacefulness feels like but in my life between my experiences and my stupid brain chemistry I question what happiness is. I find that deeply disturbing and sad. Was I happy at my wedding? No I wasn't, there was many circumstances for this. This is supposed to be the happiest day of your life right? I can't even think of another example to use as a universal time I should be happy. I love to travel and I find it calming and of course theres moments of happiness. I just don't know what it is so how am I to determine when I'm having genuine happy days?

I have to ask my therapist
It's distressing

But I'm glad I did because I found out that I'm not alone in this and it's ok. This is how I can learn the differences between my real emotions and disease, or just learn what I never learned as I was growing up. I think. 

Where does my Chronic Illness fit in? I guess I didn't care if I was happy before I got Chronic Migraines and Cluster Headaches because you don't know what you have until it's gone. Maybe I didn't notice. I'm not sure, but now I want to have a full life. I'm not satisfied with my options at this point. I'm going to take any chance for being happy that I can, even if that means having that terrible cranium procedure every six months. Which I think worked, by the way, but that's another post. 

I've found a new opportunity for personal growth in a bed of ashes. Sometimes that can be the miracle of continuing this wheel of life.  

Monday, August 1, 2016

Manic Depression


Even when I was a kid I knew that when Jimi Hendrix sang Manic Depression I felt what he felt. Now we call it Bipolar Disorder. My "official" diagnosis is Bipolar Disorder 2 Depressive, I have other diagnosis as well but let's just discuss this today. What this says is that my mood disorder isn't considered overly severe (by medical standards) and I'm normally depressed. Since the onset of my Chronic Migraines and Cluster Headaches I've gone through two manic phases, one being current. I'd say on average I'd have one every few years, after my teen years. That would be me in a drug fueled manic phase when I was about 17 above, it lasted two years and left me with serious consequences as well as a disbelief I lived through it. This was probably my peak.

Why am I talking about this today? I just read a terrible article about 5 truths of mania. Sure, I guess they were true on a very basic level. For example, "I'm going to read all the books"... right, lofty goals but it's so much larger and scarier than that and I'm going to tell the really awful truths about mania because that's what I do, it's my jam. Keep in mind, my bipolar is the "easy" bipolar. 

I'll keep my lofty goals in check and stick with 5 things about mania as well. 

1. Lofty goals! I'm going to catch up on my reading, catch up with my friends, finally finish Game of Thrones.... and so on, mostly because I'm not sleeping and when I'm not sleeping I feel weird and I just can't slow down, but I'm really tired so I'm drinking a lot of coffee. See where this is going?

2. Perfection! I feel weird so I can't quite understand what I'm reading, or saying to people and does GOT seem stranger than normal. I'll just clean the house! Great idea but there's this one spot on the floor that just stays sticky and I have to mop it over and over. Now I have to start washing my hands every time I touch something because I hate anything that could possibly be sticky. I'd better just leave the house for a while and take a break. It will help me relax.

3. I'll just run to the store. I need to pick up some socks... Excessive Shopping. I have groceries, a summer wardrobe and there was a sale at the jewelry store. Also my hairdresser squeezed me in and I have a whole new look and I have to say I look really good! I just look different. I feel really confident and that's a good thing right? I always feel so bad about myself. I'm probably just feeling better because the new meds are working. I don't need to call the doctor. I feel so good right now, I'm just going to go get a quick drink.

4. Hyper sexuality or Excessive anything that might be bad for you. I'm fine after a few drinks to drive besides there's all these cute men here talking to me. I knew I looked better. I wonder if anyone has anything besides alcohol. This group of people wants to hang out and they seem fun.

5. It all hurts and you can be a depressed manic. I can't get the house clean or do anything else because I can't concentrate. I don't want to be around anyone because I'm acting weird and I know it. I have to stop shopping online. I'm afraid to be alone, I hear things and I can't sleep. I hate everyone and no one is spared my manic anger. I don't know what to do. Just make it all stop. Now call your doctor.

I can barely write about it because I hate being manic so much but I also love it too. I feel like 10 times the person. That's why patients never call the doctor when they are in a manic phase. This is also the time most likely for someone to harm themselves because they have the energy to do it. If you know someone who is depressed and suddenly their mood improves you should pay attention. 

Thanks to my time in DBT Therapy I feel like I have skills now to avoid many of these things. There's nothing wrong with making lists of my lofty goals of things to do, or creating a "mania schedule". I have plans for these things in place. Do I win every day? Nope but I try really hard every day and that's all I can do. I don't think the cats can help me much so the hard work is up to me. It's a bit of a crap deal when your brain chemistry imbalance is telling you to do things that make perfect sense but you have remember your brain isn't correct. There isn't anything harder.

Thursday, July 28, 2016

Anxiety




I believe we've all experienced times of anxiety. The day before a job interview, the first day of school or a blind date. It's a painful feeling residing inside your ribcage and it seems to take over your entire nervous system, also your higher brain functions. Now imagine feeling this all the time and your job, should you choose to accept it, is to fight it in any way possible. This can include channeling it, ignoring it, giving into it, developing destructive behaviors, disguising it, talking about it, finding help and developing skills on your own to manage it. I do all of these things but I haven't always. Before I  move on, I think this is a great article!

http://realhealthhelper.com/common-panic-anxiety-attack-symptoms-10-signs-you-may-have-an-anxiety-disorder/

I know I've been complaining so much about how high my anxiety is lately, which is why I threw in some informational blog posts. See how I bored you to death with my medical procedures! But then I have a week like last week and the universe (or whatever) has a way making me see face the truth about my anxiety and when I had two huge moments of clarity at the beginning, then the end of the "week" I finally understood the largeness of what I'm carrying. Thanks to two of my doctors I can even see this monster that's grown and taken over my body. Imagine that kid from The Ring drawing the creepy black scribble circles over and over, that is my anxiety (you may include the creepy kid).
Got all of it? Now add chest pain and heart palpitations. There I am.

My first glimpse of who this demon was, was during my acupuncture session when the needles triggered a trauma response from my surgery. My practitioner is also my energy healer. I bet you thought you'd never hear me say that! I never thought I would either but when we met 10 years ago, she helped me get off pain medication, we had a connection and my "energy", or whatever, was moved. I can't speak of it to other people because it's my experience and it's real and it works. I just started crying, well sobbing. She told me it was ok to just let go of this thing that I'm holding. I knew then that I couldn't let go. Normally I'm all about setting energy free but I knew if I did I would be letting myself go. I'm holding on so tightly because I'm holding myself together, if I let go, I told her, she would be taking me to a psychiatric facility for care. Funnily, she took me the last time I went. This made me laugh and cry and the same time and this is when I knew that I am having my third nervous breakdown.

I jetted off to Utah for a long weekend and didn't sleep but had an amazing time with one of my best friends. I don't feel weird around her because I'm just myself and she's always just let me be that way. It was a wonderful respite for my mind, heart and soul. There's no thank you big enough for that.

As soon as I get home my creepy anxiety kid, who almost fell asleep, started perking up. No sleep, thank goodness for nieces on summer vacation and I made it to my therapist. Back where I left off. I'm feeling manic again, I'm not self harming (yet, I'm too tired), I'm resentful of my life, I can't breathe because I become so anxious and it spills out of my mouth that my anxiety, at this level is me. That's what my breakdown previously meant. I have to keep this because it's so damn important to everyone that I stay alive. I have to keep it together but it's causing me this stress. 

It's also my mental illness, I have anxiety that normally I can handle. It's also my migraines, when am I going to get one, or how long will I have it? It's also trying to manage chronic illness, when do I get my prescriptions, when are my appointments, whats happening with insurance and finally regular life. Just my regular life is complicated, like yours is. Fuck man, our parents never told us this is what life was. 

Life has moments of beauty and certainly mine has been so lucky in many, many ways! I'm often brought to tears of gratitude for this but there are important things that everyone should have that I haven't and I never will. 

If my extra anxiety is me holding me together during this time of having Chronic Migraines and Cluster Headaches and struggling with my Bipolar as a result, and there is no treatment or prognosis for my health improvement (rather I seem to be getting worse) what will this mean? My therapist would like me to stay with my friend in Utah, or my friend in Hawaii, for a while but that really doesn't seem like an answer, because there is no answer to this riddle. 

Understanding all of this now, and the events of the last month and a half, have broken my heart for the last time. Will I act different my friends? Naw, I'm still made out of glitter but now I'd rather say my broken heart is held together with anxiety and smothered in glitter. 

Wednesday, July 20, 2016

Botox


This is brief but I wanted to write it while I had it in mind!

As long as I've been explaining things, see previous post, I've realized that when I tell people I'm getting Botox for my migraines they might think I'm just getting a few shots in my forehead and that it was a benefit to me in many ways. I thought maybe I ought to clear up these misconceptions.

The above photo is the injection protocol equaling 31 shots but your doctor can add up to 45 shots. I received "extra" shots last visit and I'm not really sure what that means in terms of number of shots but it felt like a lot!

You may not realize it but these little injections hurt quite a bit, and it's a long injection. If I already have a migraine it's extremely painful and scary. Last time I told my doctor that it reminded me of this 

I was really surprised she knew who the Borg from Star Trek were, so now I get a shot prior to the injections called Torodol. It's an anti inflammatory used for pain relief, primarily for migraine suffers and you can only get it at hospitals.

I used to only feel this Borg attack when I had Botox but ever since my Cryoablation anything coming towards my head, especially a needle scares the crap out of me. I had some acupuncture yesterday and I spent a good deal crying after the head needles went in. Gratefully my practitioner is also a dear friend so I didn't feel like a freak as I had a breakdown on her table.

After I get the Botox shots it takes about two weeks for it to work on my migraines. What does that mean? I wish I knew! Sometimes I've gone a few weeks pain free and other times it just makes my migraines last a day instead of 20 days. Right now it doesn't seem to be working that great.

I'm still getting migraines every other day, they aren't quite as painful, medication isn't working on them, and they aren't lasting as long but my understanding is that this isn't how they should be working but this is better than nothing.

Yes, if you suffer from chronic migraines and cluster headaches you too can hope for something terrible but not as terrible as it was. Forgive me if I sound less than cheerful about my diminishing Botox odds.

Should you try getting it for your migraines? Yes! Absolutely, once again you should try everything and anything you have available to you. Do your research and be informed on what treatments are out there for you.

As a brief follow up to my friends and family, I will be admitted into Stanford Hospital for a two day stay for the IV Infusion treatment in August. I will keep you posted.

Sunday, July 17, 2016

Infusions


As promised here is my experience with an IV Infusion therapy for chronic migraines and cluster headaches! I know you've all been holding your breath! I hope you learn some things, I actually did while researching for this post.

This is how the IV set up looks like. My bags were filled with Saline and magnesium, then DHE. DHE is an analgesic in the Ergot family, specifically used for migraines only. Why my doctor doesn't use it or have it I'm not sure. The DHE made me very, very sick, like "bring me a bucket" sick. They slowed down the pace of entry and it helped a bit. 

I only have one good vein for blood, or IV's so my arm was left mostly bruised and swollen. Attached to the IV are ports so that they can give you other medications as needed. I received the usual emergency medications, 2 types of nausea meds, an IV only anti inflammatory for pain, benedryl etc.

Each round took 2 hours and I did two in one day. It wasn't pretty and this isn't something you would do unless you were desperate. The DHE doesn't work immediately either, it's really like leaping off a cliff. Especially when you fly from Oregon to California to have it done. 

It did break my migraine and I felt great, after a whole day of recovery, for about three days until I got another migraine. As I mentioned yesterday, my doctor now wants to admit me into the hospital for two days for this therapy and to be monitored. I said absolutely! Please monitor me! 

Going to the infusion clinic and meeting the people there, and even my doctor finally perking up, makes me felt 100% validated. It was totally different that being at the ER. There were no questions. They gave you your meds, they gave you more meds if you needed it. They talked to me, brought me food and blankets. While I was there I finally had a real medical condition. Some of you will understand this. I was treated with respect, dignity and they so helpful. As for my doctor at Stanford, I feel like she's finally doing something. Maybe I just needed to complain, or explain better. 

You guys help me a lot with that. Thank you for that! Overall, I would say that if you have the opportunity to try the DHE IV Infusion Therapy. If you're like me you'll try anything to break a chronic migraine or a long migraine. It's not easy, you'll be sick, you'll hurt but maybe you'll feel great! I'm not giving up on this therapy yet.

Always do your research and be your own advocate when you see your physician! It's so important.



Saturday, July 16, 2016

Hospitals


This post is primarily an update, I can barely keep track of myself lately! The last two months have been hard. Well, let me be real, they've been like, threading a needle in the dark, type of hard. 

First I've been in the hospital 5 times in the last two months. Twice in the ER for migraines, once for my surgery, once for my Botox procedure and the most recent was another trip to Stanford for an IV infusion therapy to try to stop yet another crazy migraine. Yes, even my migraines can range from what seems normal (to me) to crazy. I still feel like I haven't recovered from the surgery! I can still feel bruises on my head from the all the shots. I even managed extra botox this time. Lucky me, 50 shots this time.

If you read a previous post you know I was very depressed and my doctor changed my medication. Because of that or because I was working so hard to get out of my darkness I put myself in a manic phase. Those don't sound so bad until you haven't slept for a week and have a list of destructive behaviors that you've picked up again. Even with my migraines I've been running myself ragged, because you can't stop. I'm out all day running errands, making up things for me to do, which are good coping skills when you are depressed but can be excessive when you are manic. The only way to explain is to tell you is that I can't stop thinking and moving and I'm so tired. 

But my hospital visits may not be over. My psychiatrist has said if I can't get it together she has to admit me to a psychiatric hospital to keep me safe and I do trust this woman with my life. I'll do what she says I have to do, although I'm not sure how I can control my migraine enviornment so my solution has been to try to plan as many trips as I can. However brilliant this plan is, and everyone approves, its expensive and again it feels exhausting because I'm the one that takes care of everything at home.

My next probable hospital visit will be a two day stay when I get another bad migraine to try a more thorough IV infusion therapy, instead of doing it one day. My next post will be on what IV therapy for a migraine is. For now it's pretty much what it sounds like but I promise to give you more details very soon. If my doctor in Stanford can't set it up where I live then I will have to get it done there and my husband won't be available to be with me until September which is around the time for my next botox procedure. I told her that I didn't know if my migraines are getting worse or if my tolerance for this is getting lower.

I'd like to add a little paragraph that the last two months have been abnormally stressful as well. Things that wouldn't happen, happened. Without giving you a litany I'll share that I tripped and fell very hard (and amazingly far) on my driveway. I didn't go to the hospital, ha ha, but it's been several days and I think I started my biggest fibromyalgia flare in years. I don't consider myself a complainer or someone who lets things hold me back but I'm on thin ice.

Why would I share any of this? I don't know, why do I ever share. I guess because people need to know that Mental Illness isn't an illness and that you can look normal and be in more pain than anyone knows. I'm just me, the same person but perhaps you may see people with new eyes. We are a community of humans right? Thank you for being mine and always listening.