Sometimes I feel like this all the time.... ©Unknown...
Hmm.. where to start. First and foremost.. this past week or so I'm back to having Cluster headaches. In general.. think of a migraine and multiply that by a factor of 10.. yeah.. they call these suicide headaches for a reason. Most of the time I'm hysterical and delusional when I get them. Only hubby (and a few friends who were unfortunate to witness them..) see them in their full glory. I luckily do not have a recollection of what they are like.. but feel the bruises and rebound headaches when they are over. I WISH these were migraines.. but they are not. At least you can actually medicate Migraines.. you can't with Cluster headaches. I can't take a pill... they don't work. Mine were developed over years of concussions... I won't get into what started that but most of you know how that first set of concussions started.. later in life I developed anemia from my fibroid tumors (6 in uterus, 2 outside) and I kept passing out because of the lack of blood.. usually slamming into something on the way down to the floor. A couple times I hit my spinal cord on the side of my bed (a strong oak bunk bed that I used the bottom portion as my bed until my 20's.. and resides still in my computer room :p ) but luckily nothing was broken.. just severe bruising in X-Rays. Go home, get some rest.. At one point they thought I had epilepsy but after a couple months in 2 hospitals (one time spending 3 days in a ward attached to every machine known to man..) they realized I was not having seizures. Heck .. I even had 2 major cluster headaches during that time and no alarms turned on (apparently if a seizure is detected an alarm as loud and obnoxious as a fire alarm turns on). I even was thought to have Lupus. Some of my friends think I have Fibromyalgia.. but I never got tested for that.. I had my plate filled with other things. Besides.. I didn't want to spend years just to get a diagnosis for this.
I already had headaches by the time I got married in 1997 (already had been hospitalized for a week at a time .. 6 times in the past 3 years..) so my husband was already exposed to "headache Elsie". Always being sick I ignored them for years.. Usually had my middle sister throw me in the hospital whenever she had to deal with my screaming and wanting to kill myself. I had migraines from the age of 11 so this was just "worse" that's all. I had at that point already survived an eating disorder (again saved by my middle sister) and anemia (just took iron pills) and visited a lot of hospitals that just sent me back out to the world with "we can't find anything wrong with you.. just go home and rest"... It wasn't until I passed out in 69th street terminal did I realize SOMETHING was terribly wrong. The good Lord was with me because in the half hour I lost consciousness.. no one mugged me.. and that's rare in Philadelphia.. I got to work (half hour late..) and they knew something was wrong by my eyes.. I can't tell what it is that they see.. they just say that they are off.. and one pupil is actually larger than the other (always the right one). That started 3 years of utter hell.. and I mean hell.. 6 hospitals, 4 states, about 15 or so (lost count honestly) neurologists, cardiologist, psychiatrist, psychologist.. and a few other ologists just to make it even. And most of them were the best of the field.. trust me.. I paid for every one of them.. I was finally diagnosed with Cluster headaches.. but the problem is.. no one can cure them. It's a category.. all kinds of things fall into a cluster headache. My friend (a male) has them and they are totally different than mine in nature. Someone may have one type and I have another. I tried just about every experimental procedure on the planet short of surgery. Well wishing friends all coy about "oh just try such herbal medicine yada yada.. you have your chi clogged up".. I tried it.. tried fasting, overeating, yoga, chiropractic, Chinese massage therapy (mmmm.. loved that..), lost track of the medications.. vegetarian diet, no carb diet, no meat diet, no dairy diet, no food diet.. trust me I've tried everything.. and anything I didn't know about my Doctor's took care of that...
Cherry Blossoms in the dark in Ube, Japan ©Lost in Ube
Finally after only remembering 52 days in 3 years.. (you ready right.. 52 days out of 1095 days..) (I was usually suffering from either allergy to the medication, rebound headaches from the controlled substances or delirium from the withdrawal).. Hubby and I had enough. I no longer wanted to be a guinea pig and I gave up. I'd rather be in pain and know WHO I am than be so drugged up or recovering from said medication to be useless to my groom (who was still waiting to have a bride..). Any man (like my Dad) would have walked out on me. But he was there for me the whole time. He's still here now! I walked into my last neurologist's office, Dr. Jannoff and asked him point blank "can we cure this today".. he looked at me and said "no.. maybe in a couple years someone will come up with a promising..." .. I put my hand up and said thank you for trying. I walked out and that was the end. He gave me a big hug, cried and wished he could help but there is nothing you can do for these things. And I wasn't going to sacrifice anymore of my life to try to find out.
Another picture I don't know where I got but the copyright is on the picture :p
It was the year 2000, I lost my job and couldn't keep a 9-5 schedule so I had to come to the realization that my life was changed forever. To this day I have a hard time dealing with it. I'm used to having my hair on fire I'm so busy. Had 2 part time jobs (one in a television station (and then a television corporation), the other at a law firm) and had full time college in Temple University (because I wanted to be George Lucas). Now I was just short of nerfing everything in my apartment because I kept crashing into them.. with no job and no way of getting one anytime soon. In my culture.. you are what you do and your self worth and viewpoints are completely determined by your occupation. I was nothing more than a leech in society.
Close up of Cherry Blossoms in Ube, Japan ©Lost in Ube
2003 in the middle of another project that I got myself into (because I get bored very easily).. that I won't post about yet.. but most of you know.. I thought I had appendicitis. I finally got to the hospital after much arguing with hubby who was adamant about me going.. and I found out 2 things.. My anemia was bad (Hemoglobin count for normal is at the lowest 12, they transfuse at 8 and I was at 6).. and I had fibroids which was causing the anemia. I mean.. I'd been bleeding for years (started my period at 9 years old) so this was new to me. They gave me 2 bags of blood (thank you to the 2 kind souls who gave their blood to save my life.. whoever you are) and I immediately started to get my energy back. I also went through another 3 years of trying to find the right birth control to stop the bleeding.. Mental note.. DON'T GET ON DEPO.. I bled for 2 straight years... (off soapbox now..) I finally got one that works .. strongest on the market.. but it works.. I don't have my period every 2 weeks and it only lasts a few days rather than 9...
Railroad scene in Spirited Away
So this takes us back to the present. In a new apartment (lived with in-laws for 7 years when recovering from the financial meltdown of losing my income), hubby is still here and I'm getting stronger every day. Clusters are here to stay unless I get miraculously healed. Even so.. I'm okay. People with worse problems manage to find their inspiration from others and work through life without ever complaining. I should learn from them. Overall I know now who my real friends are. They want nothing by my friendship and are there when I'm in the depths of despair. In reading Chaki's post I was reminded of everyone's struggles in life. In reading Jeannie's blog in general I read of inspiration through turmoil. I have learned a lot through this journey down this road.. even I have no idea where it's leading to. It's not important anymore.. So I'm on that railroad through storms, through beautiful landscapes and scary dark corners. All in the comfort that I am loved by new and old friends. That's my comfort.