For the life of me I have no idea where I got this from.. might have been an email sent to me by my oldest sister. ©Unknown...
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.
My normal state.. ©I think.. LiveJournal..
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...
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.
9 comments:
I was moved by your openness in sharing your struggles and suffering and wanted to share this... I know that this is NOT God´s purpose for your life. God is Good... never forget that (no matter what happens)! God did not give you cluster headaches and make you suffer all these years. He´s not like that. I know from first hand experience that He can heal you. I will never give up praying until it´s done. I have the faith for this and know that He will do it. He is, after all, The Creator, The Healer, Our God... He´s got your spare parts up there in heaven... It´s time. Be Blessed and be Healed! Love you.
I need to give you a hug!
Christy M.
I know that we have discussed a little through email about the troubles that we both have had. I think we can relate to each other through both our pain and triumph.
"People with worse problems manage to find their inspiration from others and work through life without ever complaining. I should learn from them."
I think it's o.k. to complain a little, especially when times are really hard. What else can a friend do but to listen? Anyhow, your true friends won't look at it as complaining. They only want to be there for you.
Elsie, I am truly amazed at your courage and strength regarding the struggles and suffering you have endured during your young lifetime searching for answers. A weaker person would not have been able to endure what you have been through. Sometimes I just sit back and think of all the people from all walks of life, who have never met before until they happened upon one another on a particular site. These strangers at first, most of whom have also experienced pain and suffering in their lives, have found a way to reach out and touch the lives of others, and through their kindness & friendship towards one another, they are no longer strangers and each of their lives has been enriched by the common bond they unwittingly share. You are so right Elsie when you said you will find comfort from all the turmoil you experience, in new & old friends. It is probably the cure you have been searching for all along.
Huggles Sista... You just concentrate on getting those headaches to leave or at least go back into hiding. I hope they ease off soon.
You are a strong person and I see this more than ever with your post. As the song says, What Doesn't kill us will make us stronger. That really rings true.
However, please leave the suicidal thoughts to the crazies like me. Your too sweet and too nice and strong to have them. Give hubby a hug for me and tell him thank you for sticking by you through it all.
Thanks for all the well wishes :) Seriously. You have all been my strength. God is good. He's healed me of many many things and I know he will someday do so of this if it's in his plans :) I don't fret anymore in terms of having them.. I just wish not to have people witness them. So when people say "so how are you?" I just say "hanging in!" Writing this was a bit hard because when I put it in words it just sounds so dramatic LMAO!! Still.. it is serious and I can't be coy about it. So if someone ever asks for real and they want to know.. it's just a click of a link to this.
Christy sweetie it's been ages! Hugs back sweetie!
I hope you did cry writing this because I've shed enough tears for both of us. Wonderful comments too. Agree with Jeannie that it's alright to complain, even shout out, "I'm NOT okay right now." And with Marg about reaching out is healing and by posting this, I hope it's helped a bit. Sometimes, we just don't bother explaining when we're hurt.
Accepting is medicinal too. You have these crazy headaches but when you don't, enjoy life. You certainly bring humor and color into the lives of others! Tell yourself you deserve good. It's so hard for me too but we all have to stop feeling guilty about not being able to do the things we think we SHOULD be doing. LOVE
You've endured things most of us can never imagine, overcome adversity and prospered! We're all here to hear each other complain and give support. What are friends for.
Take care my friend.
Believe it or not it almost feels like an out of body experience. I start to remember my life in general and even when I go back to some portions of my life.. even Christy will know about this.. and I'm shocked at the experience. I mean EVERYONE has their own experience.. just strange when you sit down and write this stuff... just strange really. I do notice how much I block from memory and only when I do these things and sit down and think about it does it come back to light. Cathartic I think is what it's called.. LOL now you know why I don't write that much about my life. Though with this blog I might venture in some things.. HAPPY things.. just need to find my inspiration :) Reading all of your posts and blogs and thoughts and well-wishes will spur up some imagination in me long in slumber..
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