My Loss is also my lesson..

 The journey sometimes takes twists and turns that leave all the "professionals" baffled.

This is one of those less traveled paths where she told science to suck an egg...that ONLY God makes the final call. 

From mourning to laughter...

He has not yet finished her mansion..

we learn every day a little more.

Thursday morning I found my already unsteady and tired feet on a new path in my own journey of life, I have taken my first step into the last steps of someone else. My Grandmother whom has always been my sanctuary and soft place to land had reached her end days.

 I walked into her hospital room unknowing this was different than any before.. I just figured we were doing another in and out trip to the hospital as she  had done so many other times before.
 This entrance into the room was different...there was no "hello Beautiful....hello Gorgeous salutation. She laid there lifeless, and unknowing that I was there. It was a sight I had never seen before, and was unfamiliar how to handle the emotions that were pushing up from deep within.  At 92 this woman who had always been chipper with a smile on her face is now lying motionless on a hospital bed that looks and feels cold and uncaring about her situation. It is just there to hold her body...nothing more, I want to climb in with her, hold her in my arms and surround her in the love she has given to me all of these years. I want my body heat to warm her, my heart to beat for hers, my love to penetrate and start her failing heart. She is just there...not even knowing I am by her side.

 The decision to remove all care...that conversation .... I can tell you...I was NOT prepared for. This is a woman who by all means of the word was a fighter... I knew the logistics, She has a blockage in her valve...her advanced directive is CLEAR...I understand her wishes. Could she even survive a surgery to place a pace maker in at 92 and a pulse barely at 30. All the thoughts in my head .. I walk away and let my Mother and Brother handle that conversation. I go in to my precious Grandmother and say Goodbye, I mourn over her...I am grieving...and then I realize...she's in a shared room. OH HELL NO. I return to the conversation happening outside the room and request a private room. I have now come to the realization that if they aren't sending her to Kaiser where she should be, they are not expecting her to live through the night. (I am half way understanding this at that time, but honestly not FULLY).
 I let my daughters know. They both are in route to join the bedside. My Grandmother is put in a private room, where our mourning and grieving can be done freely. I question now why I was mourning while she was living..I had never experienced that before. She is living...yet I am feeling as though she is gone. Trying to recall the last thing we spoke about...It was two weeks prior, and I promised to come see her next week...but I didn't make it  due to a Dr appointment and the inability to drive safely. That HURT. I promised her something I did NOT deliver. My last words to her were a LIE. I could talk to her now, apologize, hoping she heard me..but I didn't know if she did. So there was no peace in my heart. There was only regret, guilt, and this LOVE that I have always had for this woman. I knew she knew I loved her...but if I could JUST tell her once more face to face.

 Time seemed to pass slowly. Watching her breathe heavy at times and barely at others...the family was gathered around her, each of us dealing with this loss in our own private ways. We had all spent the day in an emotional state, saying our goodbyes, saying all  that we needed to say. Releasing her to leave to the other side...we had MOURNED our loss...while she laid there motionless and lifeless...but she still had LIFE. She was breathing...she just wan't awake. One by one everyone left to go home and that left me with her for the night. I chose to stay. I can give a million reasons why..but the main reason was my heart told me to... she was NOT going to die alone...

 They gave me a bed, and I laid holding her hand all night. I would wake up just to look at her, and then go back to sleep with a tighter grip on her hand. She was not able to squeeze back, no matter how hard I begged her to, but that was okay...I could squeeze hers tight enough for the both of us.
 At 4 am I woke and decided to go get coffee...she still laid in the same position she was in with no reaction or response to me in any way. On my arrival back to the room is when the MAGIC happened.
 I sat beside her grabbed her hand as I had done dozens of times since 11 Am the prior day... spoke to her and her eyes opened...she squeezed my hand with the softest bit of strength...and she spoke back. I LOVE YOU....(mind you she was speaking to me as though I was her "Mother"...but it didn't matter...) She was awake, talking, and I was there... she did NOT wake up alone in a dark and cold hospital room with no one to notice.

 I had her awake and able to tell her all the things I wanted to...she was listening and talking back the best she could. I apologized for not making it the previous week, and she just smiled and nodded.  I called the nurse in she asked her questions, the minute I knew it was my Gammy talking was when the nurse asked her what her name was...
 "Puddintain" was her response. That was her 100% kidding silly  self. I called my Mom..her and my brother returned. She was back to sleep at that time. But not for long. She was awake most of the morning making us laugh and cry all simultaneously. She was giving us the gift to say GoodBye. The gift to share moments with her that would have otherwise been lost had she slipped away Thursday night as Doctors had predicted. I Love You must have been said 3 million times on Friday between all four of us. It was just unbelievable that we were getting this opportunity. She was alert...but weak, her pulse of 30 down to 27...her breathing had become less struggled and was a more peaceful and no longer looked or sounded painful for her.  She was here and I was taking every second I had with her.
 Every Doctor or nurse that came in was shocked to see her not only awake but talking and making jokes with them. The Dr. that had ordered the cease of all care except for comfort came in and was shocked to say the least." This just doesn't happen, it's rare. I can say in my career I personally haven't seen this..." Oh dear Doctor...this IS GOD. He arranged to have her sent home on hospice. Keeping her one more night to monitor vitals and Saturday she would be released to go home.
 I stayed again Friday night with her, a less restful night as I watched her pulse drop and they could no longer get a blood pressure with the automatic cuff, resorting to old fashioned cuff, pump, and stethoscope. She was not resting peacefully, but she was only resting. I was thankful to God that I could  take the bed next to her and just hold her hand all night long.

 There were times in the last 24 hours she would awake and talk about her Mother, sister, and family that had since passed...I was her sister as far as she was concerned...and that was OKAY. I gathered in my head that she was between two worlds...and it was time to release her and tell her she could go to them. We had her for so long, if we must share her...she can go to them. The hardest thing for me to say...because I want to be selfish...I want her with me. I don't want her to go....but as the time went on, I was starting to say it with more sincerity and not out of "YOU NEED TO TELL HER SHE CAN GO" that everyone was telling me to do. I could see distinct moments when she would wake that she was confused and took her a moment to realize where she was...I didn't interpret that as unfamiliar with the hospital, but more so while she is sleeping she was more than likely with her family on the other side. As she was talking of them so much. She would wake up saying "Jesus"...I knew what I was witnessing, and I could not hold her back. My heart had finally caught up to the brain. I spoke in depth to her about how we have learned all she could teach, that her work was done...leaving nothing unfinished. Sharing with her the things she has taught me, I have passed down to my children. She was telling me I was a good kid, and she was so happy I was with her. Saying..."we had good times didn't we" many times over. We had regained our "Hello Beautiful".."Hello Gorgeous" routine. The conversation was the most beloved one I had shared with her in my 42 years of life. Not because of a single context or words actually spoken, but because it truly was heart to heart speaking words, feelings, and emotions to one another. I was there able to be taking care of her...as she had been my entire life the always faithful one to take care of me. I was at peace...and praying for HER peace now.

 We got her comfortable with moisture for her mouth, sips of water, coffee, and yogurt to eat as she asked for it. She was in a place that she was able to tell us what she needed. I was more than eager to provide her with anything her heart desired.

 She came home Saturday the 30th of May, Hospice had set her up in the home. She was awake and aware during this move, kidding with the transport team and just being her cute adorable self. Her eyes were lost and confused as she was put into the bed made for her here, but she locked eyes with me, and she would smile. I knew she knew I was here, and I would be looking out for her comfort and needs. We had a bond during the last few days, that I could never have paid money for...when her eyes met mine, a complete peace came over her face. I was no longer "Mother or Sister"..She used my name...I was now once again Jenni. The speaking of all her passed away relatives ceased...she was finally with us; totally present and in clear thought and mind.
 The hospice nurse said she looked GREAT...alertness, color, and overall defying what was expected on Thursday. No explanation... but I didn't need one. I was taking every minute..every second as a gift from this beautiful woman. There was something she wanted to say...that was obvious...we just had to figure out what it was.
 I say she was talking...and she WAS. Her breath was just hard to come by, and she was attempting sentences when she only had breath for a word or two. Distinct words were "I LOVE YOU".

 I had to head home for the night, and gather items and my youngest son. I told her as I left...I'll be back, I promise, but you don't have to wait for me. I made myself get in the car and drive away. Knowing she was safe and at home. I retreated to my husband and children . I took a shower and put on fresh clothes that I had lacked since Thursday.

All of this in the first 3 days of a new path in my journey. I had learned so very much in just those three days, and had little...wait...NO knowledge she wasn't done teaching yet. I just needed to hurry back to get back to the lesson.

 I returned Sunday May 31st late afternoon..with luggage for a week, my youngest son and a smiling Grandmother..and our personal ... hello Beautiful...Hello Gorgeous greeting.

The next installment shall come soon enough, but know as I close this first segment out (June 10), I have a perfect view of her beautiful face lying in the next room. Defying science...and all expectations and predictions since the May 27th when the Doctor's predicted her to not last the night.

If this video loads...it is from when she first awoke on Friday morning...listening back now..I hear what I did not hear then....she recognized what was happening...She spoke of her sister dying in the hospital, and the "smiles" on our faces...wow....what a moment I missed then but thanking God it is captured on video
It would not upload because of it's size. I have it on youtube unlisted to where it can only be located through this blog.
https://youtu.be/P8of7Hxga04

Random thought-I'm not even Golden Yet

Okay. ..so last night as I grabbed my purse to go to bed it finally hit me why Sophia always carried her purse around with her. ...either Dorothy,  Phil, or Gloria must have been thieves as children.
For the last few weeks I've been carrying my purse everywhere with me. ..hmm.. I'm understanding sophia petrillo so much right now.  Am I destined to lug my purse everywhere with me. ...even in my 80s???
Just a random thought. .

MS part 2

MS AWARENESS MONTH  PART 2

CONTINUATION OF MS AWARENESS MONTH 

that can be found here..

http://jenlynde.blogspot.com/2015/03/ms-awareness-month.html

Let's recap real quick....I had weird symptoms, I had a few Dr. experiences that left me hopeless and with more questions...and a family who thought the MS I was hunting down was more appropriately named Munchausen Syndrome. I was beaten down, and feeling worse by the day.

  Nothing was getting better.  those same things were happening, the left visual issue was now venturing over to play in my right eye...my balance was increasingly getting worse. I could not keep my hands still to take a picture, they shook so bad. I started using a tripod on all photo shoots, but i still had to put my hand on the camera  to SNAP the picture. So, I went and got a remote shutter clicker...because I just couldn't control the shakes. My left leg was as weak as my right leg now...my body was itching like I had scabies....no seriously...it was an insane itch. Usually at night when I was cold.

I remember I LURKED a lot in MS forums ... looking for questions that I would ask...reading answers, trying to see again...could this be?  It still looked like a duck, but there was just one thing missing .... that do many people talked about.....I was missing a 

(trumpets playing)"TA-DA" moment (trumpets playing)

 a undeniable episode of complete blindness or totally paralyzed in any one of my limbs to assure myself it still could be MS, and continue on the hunt for answers. If it wasn't MS...what was it??? I wasn't convinced either way. but I was still aware, something wasn't right.
I recall reading answers to people's questions about their symptoms on those forums, and how many times I read in response

"THAT IS NOT AN MS SYMPTOM, NOT EVERYTHING YOU HAVE IS MS RELATED, GO SEE YOUR DOCTOR"

Those words...seemed to come up in EVERY topic. I was encouraged many times by people's experiences...thinking...nope...that's not my duck,...and in moments discouraged, because there were many posts that just about to a tee described my duck....I was no closer to answers...just coming up with more  and more questions.

I returned to the "hunt" as Spring was turning into Summer. Now if you recall earlier I made a statement that I have issues with the cold, nut not the heat as most MS warriors suffer. Well....the painful symptoms that come with the cold are NOT a problem in the heat...but this summer I had an AH HA moment. I have always been very inactive and "depressed" in the summer month's. Dave always would ask "what's wrong"...I always just say "I don't feel good". It wasn't the flu...but it was like my body was going through the flu. deep aches...tired...worn down..ran over by a truck feeling. It literally was the lightbulb moment...well....hmmm..maybe I do have reactions to the heat...just not as noticeable and painful as the reactions to the cold....

I found a Dr. closer to home. I went with NO self diagnostic words. I just sat there, told him my story, told him the time it started, and how it has progressed over time. I went for a FRESH start with a fresh doctor. I sat there uninterrupted,  him asking questions that were relevant to what I said. I purposefully did NOT mention headaches...lol...but he asked. I had been having a great experience with him, so offered my thoughts on the headaches. I shared with him that the only headaches I get are from the eye issues I have, but more often now from noise that seems to really bother me at times. I just can't escape the "nails on a chalkboard" noise of just a TV on and someone trying to talk over it. The restaurant noises that were crippling me. I was honest and he was listening to everything I had to say.

He preformed his exam...I walked, he poked, he pulled out his little light...it was thorough. (mind you I had NOT yet mentioned I had seen any other Doctor..I was leaving that behind me.) After he did everything he did, he sits down with me in his office. He starts talking about Multiple Sclerosis and would like to schedule an MRI and nerve tests. I just so happened to have the MRI report and disc.  He goes over it, reads the report from Dr. Migraine (cause I had that too, even though I never thought I'd share it, lol) He compares his physical exam numbers and conclusions with the previous report...and finds "decline" in certain areas. 
 I decide to bring up the reasons I had for it to NOT be MS....no major singular or multiple attack, nothing major like my blinding spells was longer than 24 hours...things like that. Those factors were the ONE area I had difficulty with the possibility of MS, those 2 things seemed to point to NEGATIVE for MS.
 He took his time with me and explained the snowflake disease. 

"Jennifer, this disease, it is NEVER the same for any two people. Like a snowflake. The same disease, but a totally different look than the one that falls next to it. You may have what some would say "annoying" but not "truly" significant symptoms...but for you they are not minor, and they are many. Multiple symptoms all at the same time, can be just as exhausting and frustrating as someone who has lost all feeling in one or both of their legs.Someone who has had that paralyzing episode..may only have that and with a few other "annoyances" of the disease.Jennifer, do NOT compare yourself to others who have this  disease.. because there is no rhyme and no reason as to why and how this disease will affect each individual person. We can not as Medical professionals truly dismiss what our patients feel is a symptom, because who are we to say THAT is NOT a Multiple Sclerosis symptom.  If it comes from the CNS...we have to assume it IN FACT is directly or indirectly connected to the MS in the individuals body. The length and intensity is different for all patients. If nothing else has been learned, the difference in every patient is that.

I was given a diagnosis of 

PROBABLE MULTIPLE SCLEROSIS

What does probable mean??????? It means because I only had the ONE lesion on the MRI...but everything else was looking like that silly duck...we had to wait for something else...for a definite or clinical diagnosis. I was just thrilled someone FINALLY validated everything I was saying, feeling, and experiencing. He did offer his final words to me as I was getting ready to leave...WHEN, not if...your next new symptom and or flare up happens...call me...and we will reevaluate. It may be next week, next month, or even years from now...but when it does happen...we will get you right in.

We ran nerve tests, and blood tests..more eye exams after that appointment..and I just waited. Satisfied that I was finally on a path with someone that took me seriously, and put forth every effort to get me answers that were needed to continue on with life without the 'WHAT IS WRONG WITH ME" looming over my head. What remarkable thing happened after this visit? I started to feel better. I wasn't as tight, I wasn't as weak...slowly I started to find energy to enjoy life again. I wasn't 100% better, but I was feeling so much better it was clearly noticed. All my tests that were preformed came back negative for anything else, the only thing noted was my CRP was very high, showing inflammation IN the body, just not the specific place, or why. But that was another indication for him to seek deeper with more tests. Also a diagnosis of ON (optic neurosis) (yes feeling like a guinea pig comes with the territory).

I continued reading and educating myself on this disease. I had the time many others are not lucky enough to have. I had the time to "accept" what COULD be. I now was not reading about symptoms and people's personal stories, I was now reading long term aspects of this disease. learning what my future could be like, trying to get the information in me to better prepare myself. 
 Don't be fooled...there is no real PREPARING for this..lol, but I was determined to get a grasp of things I could be facing. I wanted to know how this disease progresses, and what to expect. The snowflake theory...ya that kind of screwed that up, because yes...you can read 10 people's stories...and although they LOOK similar on the surface...they were all completely different. One could have fatigue that kept them in bed all day, someone else was tired..but still working an 8 hour day. My research was for nothing...I realized...my "control" of everything was lost, there was no way I could prepare or plan for the next 50 years. because I would have NO control over this disease...this disease has a mind of its own..and will do as she pleases with no regard to me.

The bitter cold...it returned in late September of 2013. All those amazing days I had had, the energy boost I was being blessed with...was ZAPPED away over night. It came with a vengeance too..like because I had a few weeks of pretty good days...I was going to have to pay for it now!!!!!!

I again was feeling all these pins and needles, numbness, tightness, agonizing bone chills...oh this was gonna be a fun winter. I didn't call the Dr. because these were all the same things I had already gone through. I just figured I was going to endure another painful winter. By the beginning of October I started dragging my left foot. I didn't even realize I was doing it. Someone mentioned it. I started paying attention, and I was absolutely "dragging" my foot behind me as I walked. I could not STEP..even when I tried..my leg just couldn't make that movement. I then had to start lifting it up by my arms if i had my legs crossed..it wasn't numb...I could put weight on it.it held me up at least. ..but I then noticed I had been compensating and was using the right leg in a manner in which until I paid attention, didn't even realize. How does that even happen? How can you not even be aware of your walking pattern being altered??   I called...I was seen within a week, but true to the way it always works....I was walking "fine" the day of my appointment. Well at least to my standards ...lol.

He ran more tests with his reflex hammer, and poking needles..I didn't feel his needle on my left leg til he got up past my calf. ...he compared notes,,,and he noted significant changes. My "walking fine" was in fact not walking fine at all..it was staggered and off balance. I was put on one foot to check balance..the left food holding up my weight...NOT A CHANCE..the leg began to shake and tremor...and poof I was down, well I would have been had he not caught me. We talked, we got into depth how the last few months had gone. He kept making notes in my chart, and requesting more information.  He sent me out for a few more tests and return in 2 weeks for another follow up. 

My next appointment was similar to the last 2 with him. .poking, proding, comparing to previous visits notes. .and he takes me to his office.  Brings up Gait ...first time I heard those words..but once he explained it...it made sense...as you recall..I was dragging my foot, and I was concentrating on NOT doing that after it was brought to my attention...my unconscious solution was I guess ... my left foot was now swinging outward in a half circle to make the next step... (now that I know about this...I do realize when it is happening, usually after a work out...or a very long or hard day....hmmm, funny how Dr's see things we may have never even noticed) 

October 23, 2013

 Multiple Sclerosis 
(1 lesion, demyelintaion, 2+ separate attacks of different areas, (eyes and legs being the 2 main issues)
and all other possibilities ruled out via tests)

 I left the Doctor's office that day...not HAPPY...not SAD...not CONFUSED.... and certainly not THE SAME as I was when I got there. Did I have a good idea that I was dealing with Multiple Sclerosis, yes, was I fully aware what that this disease was slowly but aggressively taking control of my body...absolutely. I was educated, well read on the subject, and thought to be ready for the words going on my file...DX-MS...but you're just not...no matter what. I knew for a good 6 months 95% sure I would eventually have the diagnosis..but...even then...it hit my gut like a ton of bricks. It is one thing to know...ANOTHER  to KNOW.  Was this feeling...shock? Was it disbelief??? What was this feeling, I still can't describe it, because there are no words to do it justice...it was just numbing, sobering, and not at all what I expected. But I had it.....I had "the duck".

 There are people in my life, that I personally think, believe I WANTED this illness...like it was what all the cool kids were doing these days....

you know those people..heck, .maybe you ARE that people...I dunno, I'm not judging, I'm just saying...the people who in their heart of hearts believe that a parent or doctor dealing with an active and or unruly child are quick to pull out the ADHD label,  well...the new cool thing for lazy Mom's, I guess we get the MS card. I was uneasy about the response I was to get from others who had treated me like I was "self-diagnosing" myself months ago.

 Like really..does that really sound even remotely fair? How sad that is how I viewed my family and some friends. I found myself defending things I was going through far more than I should have had to.  When being doubted whether by intent or not, is NOT helpful, it is NOT wanted, and sure as heck is NOT appropriate. 

I found my drive home that day to be filled with depressing anxiety of telling my family. I wasn't 17 and knocked up, I wasn't the one who threw wet toilet paper on the girls bathroom ceiling...WHY was I feeling this absolute fear and uneasiness to face MY family? Did I worry they would think I paid a Doctor to give me the diagnosis I wanted...would they think I was just lying about it...surely you can understand...the support wasn't being given at my home. Remember I have Munchhausen Syndrome according to them.....OMG I just realized BOTH are MS..lol...hmmm coinky dink? 

I stopped at a gym that day before arriving home. The one thing I had really focused on in all the reading I had done..is you CAN'T predict with this disease. There is NO guarantee of  what body part will be affected tomorrow. I was already so lazy, so used to being on the couch. I could very easily roll over and play dead and let the disease have it's way with me....I never for a second thought any differently...until the diagnosis came...that diagnosis gave me some fierce FIGHT within. I wanted to be active, I wanted to appreciate my limbs with a passion..because God forbid one day I no longer can use them...and I am left with just regret. I was going to FIGHT..I don't know where it came from, I didn't anticipate anything to get me off the couch EVER to be honest...but while I still wasn't sure what emotion was inside of me about the actual diagnosis...I knew I was going to need a ready and able body..to fight!
 How in the last year of research did I NOT know that injections were in my near future? How did I miss that? When given my options, I went with a daily injection called Copaxone. I hate hate hate needles, and I still to this day...wonder...HOW DID I MISS THAT?

 So...I tell the husband and the kids. Nothing changes. It's like I said..."I spilled the milk". I don't know exactly what any one specific response was. No one made any attempt to educate themselves, they took my word for everything. I realized early on; I could have said this is a terminal disease and I will be dead in 6-9 months...and those idiots would have known NO different. It was hurtful and disappointing to me that there seemed to be no real interest in what was happening to me, or how they could help me by just learning things on their own.  I wanted them to recognize the symptoms and understand them...and not roll their eyes at me when something I did could  so absurdly be related to MS. They felt as though I made excuses for myself, hiding behind a diagnosis...yet they had absolute NO knowledge of even a smidgen of what I was dealing with. Even 10 minutes of research would have enlightened these fools.
A few jokes at my expense was how they dealt with it. Example of the jokes would be this:

one of the kids dropped an item, like a pen or anything...someone else would say

 "Oh....it's the MS...he's got it too."

 None of it  really SET in until the Copaxone Lady showed up. (I mean she must REALLY have it if they are giving her medicine for it...right?) The "lessons in injections". Have I mentioned my fear of needles? I was to give myself an injection before she could leave the house. We all sat there, poking the water balloon thingy, laughing, making jokes...until the time came for no more water balloon...it was now time to inject my actual body. I took the needle...and...after about 45 minutes of.....OK, I'M READY..and then tears and I CAN'T...it was NOT my finest hour, but in the end I in fact COULD NOT self inject. David had to. That's when reality may have started to show in my house...because I certainly would NOT go to these drastic measures of daily injections, unless I truly was in need of them. Finally a little hope for me, David continued the injections for about 5 months, and I finally started to self inject. 
 I had printed out some articles and informative papers to share with David. The sad truth to that was I actually felt I needed the VALIDATION from these papers to prove to him, I wasn't just "faking" it, or using MS as an excuse of why I had little to no energy etc. I still felt like a "problem" in the household. One day I seemed fine, the next I was completely laid up in bed. They didn't understand it, and therefore were unsympathetic and rather rude about it all. 

The one thing that changed for me the MOST post diagnosis was my overall "feeling". I wasn't feeling SICK all the time, I was feeling nothing like the old me...but way better than the "new me" from the previous year. What changed? The stress of the "UNKNOWN" was gone. It is absolutely CRAZY how much stress can create so much chaos in a body. I was able to live weeks at a time in relatively little to no visible signs of a disease. I was enjoying life for the most part again. The stress of the unknown....has GOT to be the  most debilitating time of the disease to this point. I know what these little oddities are from, so I no longer "worry" about it. I have adjusted to the "new normal" quite nicely.
 My family is more supportive, although they still have no clue really what is going on inside of me. All except for my oldest daughter who recently had to read an essay for her  college English class. It was called....On being a cripple, by Nancy Mairs.
 (she chose this out of many options, because she likes to call me "crippple")
 She actually said to me..."I think that was the best thing for me...because honestly Mom, I just thought you were "putting it on", and exaggerating things. This really validated everything you have been saying." The smile that was put on my face at that moment, still hasn't been wiped away. I know she didn't read it FOR me, but the fact she read it and thought of me..and made her open her eyes to something I could never explain to her with her listening without judgement....is priceless. If I have just one person in my family of 6 who can to a degree "vouch" for me...I no longer am alone.
 I don't need validation...I know what I am going through. What do I need? I need the LOVE and SUPPORT from my family. I need an honest to God interest in what "my duck" is. I want them to not roll eyes, make fun, and dismiss my obvious struggles that I have here and there, as just an attention getting calculated move. I want them to be warriors WITH ME...not against me. I sometimes do feel selfish, for wanting them more involved. Just educated is as involved as I need or want...but why should I want that from them? Shouldn't that be something from within themselves? However this all ends...I do know this....no matter what...they love ME and they support ME...they just haven't included the MS in that love and support yet. :o} None of them are as bad now as they were in the beginning, they have all come to terms in their own way. Education just has never been a part of it...lol.

 I hopefully stay right here and the disease progresses no further...or, I may decline as years go by...there is no road map..because we all endure differently..all of us little snowflakes...but at this point in my life, I am enjoying when I can and what I can. I try to maintain a healthy lifestyle sticking with the gym every day and keeping my muscles moving and strong. I am fighting. I have no other option. I smile, I sing, I dance, I truly live life...with limitations... yes, but I still LIVE. 
 I take the opportunities I am given, I take the consideration of recovery time needed for after, and I DO everything I can...

I choose to live. I choose to LIVE with MS...

I have been diagnosed over a year now...the "new normal" has become routine.

I know the triggers...and do what I can to steer clear of them.

STRESS, FATIGUE, TEMPERATURE

those are my triggers...those are my KNOWN enemies.

6 months after my diagnosis, we decided to celebrate our 22nd Anniversary with our 25th Anniversary plans of a cruise.

 We didn't want my disease to take away an experience we had been anticipating for years. 

Taking it early...was NOT out of fear or conceding that I would be unable to in years to come..

we just knew...we couldn't foresee nor control the future...so

 We took CONTROL of a situation we could have control over..and have not once regretted it. 

Maybe in 2017 we'll do it again for our REAL 25th....who knows!

my final words...DO NOT ignore and dismiss things that your gut tells you may be wrong. Age is the easiest excuse to ignore things. I know for a fact, had my brain function not decline in the manner it did, I still would be completely unaware of a disease brewing inside. Only WE know our bodies...and only WE can advocate for our health. Our closest friends and even our families don't always  know what's best. If you question something...seek answers. If you run into Dr. Migraine....tell him to go fly a kite. 

It could be something, it could be nothing...

but NEVER leave it unattended. 

I was fortunate and didn't live in "limbo" as long as so many others. It's absolutely unfortunate and dreadful how hard it is to find a diagnosis for so many people. Whether it be the Doctors or the Insurance Companies that create that problem ...that number is horribly high, and they should be ashamed!

NOBODY wants MS....we just want answers...and we deserve answers.

 I had a bad experience or 2, but found a Doctor who listened, and acted on HIS instinct and experiences. I then was sent to an MS specialist, who has given me great care, great guidance, and wonderful support. 

I don't have carpal tunnel, I don't have diabetes, and I don't have a brain tumor.

             I have MS.

MS AWARENESS MONTH part1

THIS POST WILL BE LONG...IT WILL BE RELATED  DIRECTLY TO MY JOURNEY OF THE SYMPTOMS, TO THE DIAGNOSIS, AND NOW  LIFE WITH MS. 

NOT EVERYONE WILL CARE TO READ...BUT WILL BE WRITTEN FOR THOSE WHO WANT TO LEARN, WANT TO TRY TO UNDERSTAND, OR ARE JUST CURIOUS. 

MS IS OFTEN REFERRED TO AS A "SNOWFLAKE DISEASE" BECAUSE ALTHOUGH WE ARE ALL THE EXACT SAME AND LIVING WITH MS...THERE ARE NO TWO STORIES THAT MATCH EXACTLY. 

THIS IS MY SNOWFLAKE....

MULTIPLE SCLEROSIS...IT IS THE "NEW NORMAL"

I had a different thought process for my next post, but since this is MS awareness month...I thought I would expand on this fun disease that has brought me to this "new normal" I now exist in. This will also serve as a document for my children to refer back to if they ever need..lol, cause no telling what parts I will forget over time :o)

Where and when did this even start?? I can pinpoint only the most "noticeable" episode. I say noticeable because for years I had suffered from so many different things, that were explained by other diagnosis'. But in late Spring of 2010 I had my first attack of blindness,,,I was at work counting down the drawers as I did every night. At first I thought I just couldn't focus, and tried blinking my eyes and rubbing them to get the focus back.. .nothing worked... there was a grey cloud that had completely come over BOTH of my eyes. I could see, but it was like looking through the old school shower glass...so all I could see was shapes pretty much. I sat down, freaked out a bit...I know the management didn't believe it was real, just me trying to get out of work...but I was sincerely scared. It took only about 30 minutes for my vision to return to "normal", placed in parenthesis because quite honestly...it's NEVER been  normal since that night. I dismissed this oddity with blood pressure rising from stress, and really didn't give it a second thought....until it happened again.

 The visual issues consistently increased making a day without either an optical migraine(flashing prisms in my field of vision) or blurred to blinding episodes was considered a BLESSING. I  was having blurred vision in my left eye, the blinding spells were happening regularly, but always for only less than an hour. I was experiencing very nauseating  double vision, the blurry left eye, sea sick eyes (which is when I would read or write, things would bounce around and give me a very sea-sicky feel,

 I finally went to the eye Dr. in November 2010 and...was given glasses Eye Dr in 2011 a whole NEW prescription for my eyes (nothing even remote to the original RX), and 2012, again a totally different eyeglass prescription and the words from the optometrist....you are right on the border of being legally blind in your left eye.....hmmmm.....it didn't even seem to register in my brain these 3 years of glasses being all way off from one another is abnormal. I knew the glasses I was given never seemed to "work" right...some days they were a perfect fit and I could see so much better, and other days, made everything worse....I just thought I had "weird" eyes. My beautiful blue eyes were failing me.

Moving away from the eyes for a bit....

I was diagnosed Bipolar way back years before, and had dismissed many other "symptoms" or signs  to that illness. The fatigue....I spent years just thinking I was "lazy" and or in a depressed state. It would  be  no big shock for me to stay in my pajamas all day and lay around doing close to nothing for days on end. Let's put it clearly...if I showered AND got dressed in the same day...it would be "where are you going?" from a family member. If I decided to clean the house ....the question was automatically "who's coming over", if I actually cooked a meal and did all the other things mentioned above...."Oh she must be in her manic mode".....so you see, the fatigue I experienced ...I didn't even know was fatigue. I assumed I was just lazy. As a mother and a wife, that takes away so much of your value to the family, and I struggled with what I "looked" like to these people who depended on me. How depressing it must have been for them to have this "sloth" as their Mother and Wife. My kids nor my husband could not bring anyone home,,,I couldn't keep the house clean for anything...and it was NEVER company ready. My friends and family  knew very well...., I am NOT the friend you just pop in on. And, if you did pop in on me....I'd stand outside and visit with you, because NO ONE was invited in to see MY disaster.I was embarrassed, but it honestly was out of my control. I wonder how much of this "laziness" was fatigue associated with a disease that has been inside me for years, but hadn't been fully triggered until 2010.....I may never know the scientific answer, but I do know...that ...Multiple Sclerosis is often misdiagnosed in early years as... Bipolar Disorder. Something to ponder the rest of my life.....Bipolar....lazy...or beginning stages of my MS.
I do recall vividly a conversation with one of me best friends probably in 2012, she told me she truly felt there was more to my issues than Bipolar, and although at the time I got very defensive...because  I hated to have to "defend" my Bipolar diagnosis, it was much more of an emotional attachment I had with that diagnosis than anything. That label...the Bipolar label did NOT excuse my behaviors, but it DID explain them. If it wasn't for the "pretty box with a bow on it" called Bipolar, then I was just a lazy, depressed, raging bitch, emotionally unstable woman, with erratic behavior.....I honestly for the first time was ANGRY with her for that statement...what I didn't know then...was she saw something deeper than a quick fix labelled Bipolar. I see now the full picture of what SHE was was trying to get through to me, and I love her for it....but again, goes back to...was I misdiagnosed all those years???? Maybe she is the ONLY one who saw what we were so used to, that we couldn't see.

I began working at Kohl's in 2007...I NEVER missed work, and I was the dependable one they could call in when other flakes called out. I had NO time off from work for anything besides a hysterectomy, 2009, and a visit to watch our oldest daughter graduate from Army Basic Training in 2008. I had an impeccable attendance record....that was until 2010...my medical leaves began in Spring 2010.
By the end of 2010   I had exhausted all of my disability funds taking EDD paid time off due to my mental health and physical health, I wasn't working enough to replenish those funds, so the last 2 leave of absences I took from my job was unpaid. I just couldn't do it. I couldn't go to work without  SEVERE anxiety, complete exhaustion, and sensory overload that would cause havoc on my entire system. I finally quit after 5 years of service in the Spring of 2012, (I quit in April 2012...my year to date earnings that year was less than 400 dollars, that should put into prospective how much I WAS NOT working, while I was still employed.
 I have never regretted that decision to quit. Even though things only got worse as time went on. I thought Kohl's was the PROBLEM, I thought Kohl's drove me to being "sick", and once I quit....I figured life would go back to normal. It did...but to the "new normal"
 By 2012 I was having so many different issues I couldn't even imagine them being related. There were just so many things changing....could I be showing signs of "aging" already? For some reason many people in my circle of friends dismissed many of my little complaints and concerns as...well, you are getting older"...HUH??? .I wasn't even 40 yet...I thought the phrase"you're no longer a spring chicken" was for like 70 year olds....not pre-40 year olds. Why was that such an easy "excuse" for all things that ail us???

  I knew by this time , that I couldn't plan to do things 2 days in a row. No matter what I did, I needed what I called "recovery" time. I was slowing down to almost a crawl. Just the thought of something planned sent me into pure exhaustion. This whole too tired and unmotivated was far more severe than anything I had previously been use to. Things didn't happen over night, and there are only a few things like the first blinding spell, that I can pinpoint to a certain timeline. The rest of the "symptoms" gradually started happening, to where it took another year for me to realize....hmmm, something MORE could be wrong.
I had a painful tightness in my elbow joints that I found myself constantly "rolling" my arms to loosen them up. I would have sharp pains in my wrists, and these arms of mine just felt HEAVY....sometimes took everything in me to raise them up. To hold a curling iron or hair dryer.....nearly impossible. I decided after a few months of this sensation..I must have carpal tunnel.
 My legs were having the same issues...my left much worse than my right. The heaviness in them was hard to walk without KNOWING I had to move one foot in front of the other...in bed...oh that is where they felt like 200 pound weights were attached to them. David had always referred to me as a figgit....but this was way different. I would move them now, just to motivate blood flow. It felt as though the circulation was just plain cut off.
 My feet would be ICY..and there was NO relieving them once they got to the point of cold...that cold was DEEP in my bones. This is about the time I was using the heater in my car way into late spring....even at 75 degrees outside and  was warm enough NOT to have it on, but I enjoyed the heat, I needed that heat...I didn't even realize at the time I was doing it...but oh my kids knew...they HATED to drive with me anywhere saying you're gonna turn the heater on aren't you.....funny sometimes, how hindsight brings up moments like that. Or the times I would be in tears in the car because David would refuse to roll up his window...saying things like "why should I suffer just for you?? (this goes back to the was we treat one another in our relationship as brushed upon in BOY MEETS GIRL blog)  I would turn the car dial off of blue and put it on red....not ON but to have the incoming air that circulated would be warm...because I kid you not....the cold HURT everything inside of me...EVERYTHING! I would try to compromise and just place it in the middle....not red not blue....but the MIDDLE.....again, he refused to accommodate me, and I hated him for it...every time we had to drive somewhere. David had a sense of resentment towards me with my "complaints"...I doubt he ever sincerely believed anything I said about how I was feeling was valid, but rather just me doing everything I could to go against HIS happy life.  I had a NEW sense of resentment begin at that time that I had never experienced....why should I suffer for you???? Those words...oh how those words truly dug a hole in my heart that I doubt could ever be repaired. I had known for quite some time we were NEVER going to have a Country love song kind of relationship, but ... he just said,  for the first time out loud...your needs really are NOT important to me.

 I was also experiencing what all I could describe it as was....sensory overload...all at the same time...light, sound, and touch were so sensitive. If you touched my skin, I would flinch...as though it hurt. It didn't HURT per say..it just sent a sensation throughout me that was quite uncomfortable and borderline painful. The TV or car radio would be on so low that I could hear it just fine...but one more notch up would sound like I was in the middle of an Aerosmith concert, although no one else around me could hear anything. This caused more issues between David and I, because again...I was needing "special treatment". He would not compromise with me on this either. He said I just like to complain. I didn't enjoy it...I literally was miserable, and felt locked in a body that was now foreign to me with no escape from it. The sunlight, fluorescent lighting...oh...would hurt my eyes so bad and cause my vision to do things even now I can't even explain properly...it just "hurt" for lack of any other description.
 Going to restaurants or parties (anywhere really that is "active") would be and still is one of the hardest things for me to handle...the noise...the lighting...the many different conversations going  on in so many different areas....it's like my brain is about to explode trying to figure out how to TUNE out everything but who was talking to me.  My body will literally tighten up so tight I would love to find a fork and stab a holes all throughout my body to release the tightness...similar to when throwing something in the oven to cook that requires it to be covered...but requires VENT holes....that is what my body needs at those times....vent holes.

I went on for awhile longer just accepting that I'm getting older, and my low tolerance for people was just me being a "B" word. I really hadn't taken much thought to all these things that were happening to me over the last couple of years...I was just getting used to the "new me".

 By the end of 2012 I was having all the above problems, added by some new things. I was dropping things, there was a distinct weakness in my right hand. I was tripping from time to time, and my left leg was becoming weaker and weaker every day it seemed. I was having memory issues, and having difficulty finding words in a conversation. It was like my brain wasn't firing on all cylinders...just frustrating at first, but it got worse. I would ask Kristen I guess a few times a day...what time do you work today...she would get so annoyed because I guess I had just asked her 3 times already that day. I dunno...I don't remember asking...but she did. I started writing myself notes at this time..because I would forget everything.

  I had noticed driving was bringing on obstacles I had never experienced before. I was missing exits on the freeway, because I couldn't remember if I checked over my shoulder before merging over to get to the lane I needed....and did that same repeated check...did I check...check...did I check...so many times...I passed the exit I was trying to merge to. The first time this happened I just thought, you're dumb...lol...but it continued to happen over a period of time. It was REALLY noticeable and scary when I was driving David around. (stress trigger...but who knew that then, LOL)   I would have issues keeping the car in a straight line, maybe it was my vision, or weakened arms on the steering wheel...but there was a definite struggle to drive safely and in a straight line. I didn't know I was veering into other lanes...but my passengers did. I found myself not driving on days I KNEW were rough days, it just became easier to skip the grocery store trips.

 I remember waking up one morning with the weirdest sensation in my right foot...the toes felt swollen...like seriously SWOLLEN.....they felt like a water blister was on the ends of each of them. They had a sensation that was unlike the numbness tingling I had become used to...it was best described as when your hands are freezing cold like you were out playing in the snow...and you put them under hot water...THAT feeling...that is what my toes were feeling like.  I remember that is the day I had decided I must have diabetes...I mean Lord knows the amount of sugar I intake daily it was bound to happen...

 Those eye issues I had been having since 2010 were increasingly getting worse.  I noticed I could no longer play games on my phone. Now for some people, that wouldn't even be noticeable...but for me...it WAS. I can't describe it correctly, I know because I have tried....lol. But I could SEE the screen, but it just wasn't registering correctly what I was seeing. I also was having the brain function issues where my reactions were so delayed I could no longer complete a TIMED game. I knew at that point...something was wrong. YES it took a stupid game like Candy Crush to enlighten me something really could be wrong here.

 The cold...oh the cold. I know I mentioned it earlier, but it's worthy of another go around. I found when the weather turned cold...everything I complained about would increase..my body HATED the cold. I remember one time making meatloaf...the meat, the milk, the eggs...I put my hands in to mix it up as I had hundreds of times before....my right hand  reacted with violence...there was an excruciating pain the shot from my finger tip all the way up to my shoulder...it was shaking..it was in pain like 15,000 puppy sharp teeth were stabbing me. It literally took me to my knees crying in agony. Needless to say...that WAS my last meatloaf I ever touched. If a child asks for it...they know THEY will have to knead it. There was just something about COLD that I could no longer tolerate. I had hand warming devices, foot warming devices, and a heated mattress pad...I couldn't handle ANY cold weather or cold environment without it HURTING.

The final straw...and what FINALLY took me to call and make a Doctor appointment.. (yes up to this point hadn't seen even ONE Dr. besides the eye Dr.)
 I got in the car to go to the store. I sat down adjusted my seat... and couldn't turn the ignition over because I had NO idea which pedal was brake and which was gas. I just sat there staring down at the floorboard with a complete and absolute disconnect of what I was going to do. I knew I needed to step on the brake as I turned the key over....but could not for the life of me figure out which was which. At that moment I self diagnosed myself with a brain tumor.

 I made an appointment...FINALLY....wrote out a list of about 15 things that over the last couple of years were "off". I explained to the Dr. I knew none were related, however since I don't see a doctor regularly...may as well just throw it all in there. We discussed my vision, my balance, my weakness, my tingling, my very oily hair, my inability to use what I considered my full brain power, my tightness in the joints, my severe tiredness (ya the word fatigue wasn't even in my vocabulary then, lol) and a few more....I then told him...if I were to diagnose my problems, I have diabetes, carpal tunnel, and a brain tumor....I laugh now...but I really had dismissed everything else wrong but the brake pedal incident....weird, huh. The oily hair was a huge concern of mine by the way...you could fry a chicken on my head a few hours after it being washed...it was the ONE unrelated symptom, but hey...it was on my list hahaha.
 He did some exam stuff...talked to me in detail about everything, asked about depression...I avoided that conversation and lied (no Dr. I'm completely happy and content in my falling apart body) But I knew enough NOT to mention Biploar..because that statement makes even the best doctors turn off their listening ears. He made notes, ordered blood work..and said well let's start here, and rule out MS. I didn't react to those two letters because I had no idea what MS was.  Montel Williams has that, I think;  was my ONLY real reaction.

 That was until.....a few days later I got curious of course.... and went ONLINE... 

oh WebMD you big fat hypochondriac's nightmare and dream all in one.

 I read the symptoms...and I was reading with my mouth opened wide....OMG .. I could have skipped writing out MY list and just printed this page. It was literally text book symptoms. Here is one:

Multiple sclerosis (MS) affects the brain and spinal cord. Early MS symptoms include weakness, tingling, numbness, and blurred vision. Other signs are muscle stiffness, thinking problems, and urinary problems. 

I still hadn't fully grasped WHAT Multiple Sclerosis was...or what that meant for me...it was one of the most confusing research studies I had ever conducted. I learned as time went on...googling my specific symptoms and or sensations...better educated me rather than trying to take in all the scientific mumbo jumbo at once...what the hell is Myelin anyways?  (getting ahead of myself, because I had not yet been diagnosed, but researching this possible disease is what I do, I just like to educate myself)


He set me up with an ophthalmologist....did all those tests, he said well it;s NOT MS, because your blindness is always temporary, if it was MS it would have to last longer than 24 hours...okay...so what's wrong with my eyes? He sent me along my way with yet another EYE GLASS RX and a diagnosis of Pigment dispersion syndrome. My blue is flaking off of my iris. Hmmm, okay.

 I wasn't convinced I had MS at this point, but I had something going on. My "episodes" WERE too short according to all the data I had read. I didn't have issues in the heat like everything I had read people experienced...I had issues with the COLD..so maybe it wasn't MS, but...what was it. Certainly a neurologist would know. I can't be the ONLY person to complain of these things. I was hopeful, and still hadn't dismissed the possible tumor. The cognitive issues were only getting worse. (another new term I hadn't used ever until all this started.) I had to pull my car over one night...because I had no idea how to get home...out of nowhere...as I was driving, my mind went blank, I looked around and had NO idea where I was and how to get home from these strange surroundings. ( I in fact was just around the corner from my house...yes, I felt STUUUUPID...but it was things like that, that really scared me)

I went to the Neurologist...here's where I screwed up. I told THIS guy about all of my symptoms over the last few years....and threw in the I was diagnosed Bipolar at the age of 29. I swear I knew better...but at this point I was convinced something was wrong in my brain (the time elapse from initial Dr. to the neurologist was 2.5 weeks) I had almost crashed my car into the garage door a few times, my reflexes and respond time had gotten so bad. I wanted everything on the table and I wanted a full exam and hunt for what was wrong. He scheduled an MRI and told me I was having migraines. Hmmmm...I had never had a migraine in my life...that makes NO sense. He said, you said you have headaches...I said I HAVE headaches that are a RESULT of my vision issues. the blurry, the double, the seasick eyes....THAT gives me headaches. It's a reaction to something else. He asked if I had ever taken Depakote I said yes while being treated for Bipolar, he said you don't anymore?? I said I hadn't been on BP medication for about 4 years. (HINDSIGHT...KISS OF DEATH FOR ME)...He gave me a list of foods to avoid that trigger "migraines", an RX for Depakote to manage the "migraines", and see you after your MRI.

Long drawn out story...he told me my MRI was COMPLETELY normal, with nothing noted as concern....and I was having migraines, as he originally noted. I said I am NOT having migraines. His response was....as many times you tell me you aren't having migraines, I will tell you you are. Oh he pissed me off, but I was desperate...I pleaded with him...if what is going on is NOT neurological...what could it be...where can I go...I want to feel like ME again. You ready for his response..." I don't know what ME feels like, but if you want my honest opinion...you need psychiatric help and nothing else.;"

I was in complete and utter disbelief...and rather than show him just HOW CRAZY I AM (cause Lord knows I can show a man crazy) and validate his statement. I said thank you for your time, I would like all of  my medical records please.

Sure enough...in HIS notes after everything I had told him and his initial exam notes was this:

PATIENT HAS BEEN DIAGNOSED AND TREATED FOR BIPOLAR DISORDER, 

(NON COMPLIANT WITH TREATMENT PLAN)

There it was...and WHY I normally would have never said a word. The minute I said anything about a mental disorder...he checked out, and dismissed everything. Like I was BORED and wanted some excitement in my life, and multiple doctor appointments 100 miles away from my house was how I dealt with my boredom...as though I was needing attention...oh I was crushed. I was mad, and I was STILL not "normal".

Now, please understand I did NOT have to OR even want to have MS, but I did WANT an honest exploratory hunt into what was wrong with me. I didn't care WHAT was found, if anything at the end of it...maybe I was just crazy and imagining all these crazy things....but put forth some effort into discovery....I am a human after all. Yes, after reading everything I had read about this disease..it looked like a duck...and acted like a duck...but  I wasn't sure it WAS "that"  duck.. I wanted a definitive answer, a good attempt at helping solve the mystery.....not an egotistical overpaid Doctor to dismiss my concerns like I was unworthy of his time.

I left that office shattered...and before I could bring myself to make that 100 mile drive home I opened up my MRI report that he said was "normal".

DIAGNOSIS AND KEY FINDINGS:

(imagine my surprise when there are words underneath...because I was told NORMAL, shouldn't that area be blank???)

2 MM AREA OF INCREASED SIGNAL INTENSITY blah blah blah  CORPUS CALLOSUM WHITE MATTER  blah blah blah AN AREA OF DEMYELINATION/GLIOSIS. CLINICAL CORRELATION IS NECESSARY REGARDING THE ETIOLOGY AND CLINICAL SIGNIFICANCE.

(but hey....it wasn't a tumor!)

Well....that doesn't sound "normal". I didn't know what it meant...but I knew it wasn't as he claimed "normal". I went home, deflated, and no closer to answers as to why everything to do with my body seemed to be going out on me. I started to doubt myself...doubt everything I was feeling. Was I creating all these issues, making myself sick as some had told me...was it all the diet Pepsi I drank making me ill...heard that one more than a few times too.  My last visit was in April 2013 with the neurologist Dr. who diagnosed me "crazy and non compliant with migraines" I decided to just go back to ignoring all my problems...because he said I was crazy...maybe I was. Maybe if I just ignore it...it will go away. Maybe I had read too much, and all these things were just being created by my mentally disabled mind.


About this time, well....long before really....David was just "over it". He and the kids were done with the "drama". They didn't care if I was truly ill, truly was experiencing scary things within my body, nor did they care to engage in any REAL conversation about what was happening.  I heard "self diagnosis" more than I care to remember. There was nothing I could do that they didn't feel was an "act" or an overdramatized episode.  The eyerolls that came from every one in this house, was too much for one to bare.  You know when you ignore somebody or something in hopes that it will go away.... THAT was my family! Ignoring everything and believed nothing was real.  I was just using this as another excuse to "demand attention". I was tired of my body not working or cooperating with me...I was even more tired of my family treating me as though I was a lying, over dramatic burden, in essence without them ever saying it...my home, where I should have felt the safest and most secure....I was treated like I had Munchausen Syndrome.  It's still an MS if you think about it...lol

Dr. Migraine won. I was giving up.... 

Whatever I had going on....real or created...I couldn't battle my body and my family any longer. 

TO BE CONTINUED.....in a day or so

( it was becoming too long..so decided to cut it in 2 parts)
part 2 is here
http://jenlynde.blogspot.com/2015/03/ms-awareness-part-2.html

a normal day, that looks NOTHING like normal

Here is a normal everyday day for this crazy life I have...

Wake up...against all odds it was before 9 am. Being a No School day, I had the opportunity to head to the gym early, but realized I forgot to wash my gym stuff from Friday....here's to an hour delay UGH. But, at least I’m an hour before my normal time.


Finally have all my things together, and head to the truck. Driving to the gym for most would be a normal every day uneventful procedure. For me it is met with road rage, disgust for others on the road, and impatience for every other car on the road. Forcing me to speed up to not allow them access to my lane, or slowing down to a point I am determined to screw their day up and miss a turn because my truck is now being used as a BULLY machine. It's sad, I wish it weren't so...but unfortunately it is who I am.

Safely arrive at the gym, check in, go to tan...their WiFi won't access the Internet...so 10 minutes in a tanning bed with NO music...GREAT...I ended up out in 4 minutes because the boredom just consumed me and angered me...

Walk in to the locker room...stop and weigh in...Pleased with the number, smile and feel positive, continue to my locker...

I am stopped by instant panic as my eyes glance down the walk way towards 25.

Someone is there...in MY locker...no, the lockers are NOT assigned, We must take our locks before we go home, but...just the same...that is MY locker! I use it every day, it is perfectly located with a bench and quick access to a hide away area for changing for the modest (that is me...modest). My breathing is altered, it's a panic attack. Yes, sounds ridiculous to the "normal" person...but I have stated before I am not normal. I contemplate turning around and leaving...(I have used this maneuver before) I try to calm my breathing, as I slowly walk towards MY locker...angry at the lady who has a LOCK on my door...upset that someone got here first...WHY could she not use 24 or 26....WHY 25??? I decide to just suck it up and use 24 myself....but it's hard...and it's foreign to my senses. I am almost debilitated with discomfort of the situation.


Finally get it done, the anxiety has raised my blood pressure and my anger...but I manage to successfully get done at the locker..I am proud of myself that I was able to work through my issues, and didn't give in to my first reactions, as I usually would have.

Get onto the machines, realizing I forgot my morning pills...OH NO...the day has just begun and I'm already screwed.

I take 3 different pills every morning to get through my day, but if it’s a gym day; they are necessary. Nuvigil is for Fatigue, Baclofen for the Spasticity, and the Tramadol for the pain...all three are NEEDED for a successful gym trip. I manage as long as I can. My normal 2 hours working out turns into 45 minutes or less. I Witness a lady get off her machine and just walk away...gross....wipe it down. Gym etiquette people, it’s gym etiquette. PLEASE learn the basics. I see this far too much for my sensitivities to handle. I don’t understand the lack of common courtesy in that place. I go to the weight machines and again, do what I can...but decide I just can't continue. When it HURTS to try, it's not worth it.

Make my way back to the locker room, and low and behold there's the locker stealer. Herself...I maneuver around her, and trust me she knew I was ANNOYED...at this time it was not only because she was in MY locker, but had the entire bench filled with her crap...strewn all over it. There was no need for that, she could have tidied it up, and at least given me a corner to place my shower bag on it. Nope...she just watched me huff and puff around here slamming everything around here. If I could have one gift in life, I wish I could be less obvious with my annoyance of others. I try to just “go with the flow”. But for me, that is nearly impossible.

I make my way to the shower, rinse off the gym sweat , and put on my swim suit. I follow the rules. I wish everyone did. Open the steam room door...and there's another pet peeve...sweaty nasty woman in FULL gym attire AND SHOES....I scream UGH in disgust, and shut the door without entering. I wait in the Sauna til the nasty disgusting lady leaves. My issue is this...the door states....SWIM ATTIRE REQUIRED, NO SHOES and because so many DON'T listen to rules...they posted NO SHOES twice. On the side of the room is rules posted as well...SHOWER FIRST...being the number one rule. The fact that people use this PUBLIC COMMUNITY area and treat it like it’s their home and does whatever they want makes me sick. I get annoyed greatly when I follow rules. And others don't. I'm sure there is a mental diagnosis for some disorder that would be in line with...but all I know is it infuriates me to a point that I could scream!

Here’s my take on the shower first and NO SHOES….it’s a STEAM ROOM.. we are in there steaming everything up, breathing in vapor for a cleansing benefit…and if YOU are sweaty and in your gym clothes..I’m breathing in your filth. If you are in your gym shoes you add to that mess with the dog pee and crap you have walked through out on the streets…turning it all into this steam I am now inhaling. It’s gross, and I take issue with it. Because it’s a POSTED rule…makes it even harder for me to tolerate, because again…I follow the rules. Why can’t they?

I finally steam, then shower. Walk back to my "loaner" locker, and that woman is STILL there...taking up the whole bench, I make my usual HMMPH sound, audible enough to where she hears it, I no longer am "nice" about the whole thing moving around her, and decided to shove her crap just enough to where I can now have the corner...she says..oh I'm sorry, I'm taking up so much room. REALLY....wow...well, how about when you say that you start pulling your stuff to a pile and SHARE the dang bench... but she doesn't and I say , well I'd be lying if I said I didn't expect you to be gone by the time I got out of the steam and shower room....

I finish my routine, she finally takes her and her bathroom sink of items with her, I have the bench to myself as I close up the locker and look sadly at 25....telling myself the early gym time, just isn't worth it...I'll see you tomorrow my dear 25.

Get to my truck, place my phone on the tool box in the back as I load everything into the backseat....start to drive away....hit the first speed bump..and I hear it.....OH NO...look in the side mirror...and there is my phone...ON THE GROUND. The battery, the back, and the screen all separated....

The screen is not broken.....thanking God in my head and aloud...I seriously couldn't break another phone right now...

The drive home is a close resemblance to the drive there....now I just want to be home and do NOTHING.

Home. .. is my solace from the big bad world. The one place I can control my surroundings, and avoid unnecessary run ins with stupid people. Until of course they wake up or come home. ..lol. because even my blood. ..my prides and joys jump on my nerves as if it were a sport for them. ..lol. ..mom, having a meltdown over who ate the last banana . ..is entertaining to them. Lol.

This is all before 1 pm.

I am exhausted already and ready for bed

A normal day...that is not so normal...but it is my normal.

Change is hard for me, I like consistency in everything I do, knowing what to expect is how I manage through my day. If I have a Dr. Appointment, and there is a new lady at the desk checking me in, it’s a melt down. Where is "Cindy" the one I have developed a relationship with and makes me smile when I see her…why? There is an actual physical reaction that takes place inside of me when there is a hiccup in my “normal” routine. Why must everything be without change or even minor adjustments in my life, for me to manage without anxiety and anger? I don’t like being this way, I really don’t. I just have yet to conquer that problem. Don’t change it up on me…and all should be fine. Stay out of locker 25..and we can coexist at the gym and never even know the other is there.


I have a dream….that dream is to have a day where I don’t find myself wondering why…and instead enjoy life completely and fully just as it comes...with instant change and derailed  expectations and all...that would be nice. 

The boy meets girl Story

So...what about this guy..what about this story makes it different enough to make us a couple that have beaten the odds..and found the longest windiest road possible...to get us to THIS point 25 years later.
 I can't even begin to describe him, our relationship, or our evolving marriage without knowing I will miss some major factors. It's been 25 years, different upbringings, different outlooks, and just different personalities all together. We start our story like many others.

..boy meets girl..

 ..and after that...it's nothing like anyone else's story! It is OUR story..
  I will do my best to capture the key components that brought us to from 17 and 20 years old...young, dumb, and completely clueless - to parents of 4, who even when they as a couple struggled daily with maintaining even civility towards one another...found the common cause of figuring it out, working it out, and making it happen...for those children. The odds stacked...we rolled the dice!

 I met him when I was a young child. His parents and my "uncle" were best friends. So I had gone to his Father's church and was in the Missionettes program. His mother babysat me from time to time...but we barely remember each other...it was THAT spectacular of a childhood love story, hahaha. However, we did know one another and that was the point. Was it a GOD thing, was it predestined...was it all in His plan to have us put together? If it was..why was it so hard? Did we make it harder than necessary?

Fast Forward 9 years from the last time the skinny mop head boy and stringy haired girl were last in the same room together.

 At 15 I no longer had my parents home or guidance, and was left to finish the next 3 years of being a minor with who ever and where ever I could land on my feet. Partly my choice not to return to my Father's home in San Diego after my triplet Brothers and Sister were born....partly because my Dad didn't care enough to save me from my self, and allowed the choice made by a 15 year old "child" to give her the power to make an adult decision, when she was anything but....

 I was living with my Grandmother for awhile  and just after turning 17, she too decided she had had enough ...my parents as we know, had no burning desire to take care of the child they created, and couldn't really be bothered with their minor child having no where to live.. so I called the "Uncle".

 In September of 1989  I relocated to Long beach to live with  "Uncle" Herb (he grew up as a brother to my mother -  and a son to my Grandparents).., . I enrolled in my Senior year of High School ( but because of my credits...or lack there of..was placed back in the 11th grade...sure was a punch to the gut feeling) I was back to a "new start", that looked oddly like my Freshman year and found myself alone again.

 I started attending church with Herb, at David's Dads church...a  Pentecostal church, that was far different from the Lutheran one I had grown up in. This is where our journey  truly begins..

David had not been attending church for some time...the normal teen Preacher's Kid rebellion was going on, I get it . Well,  he had heard there was a "new girl" at the church...and well, that curiosity (and young  hormones) prompted him to come on out for a Sunday night service one night in October...

 He saw that I smoked..and his theory was this: 

 girls who smoke have sex...

yup, that's my guy.

He drove me home from church that first night...and we talked for literally hours..I HAD this problem back then, of sharing WAY too much, and never had anything that was personal and unshared.  He found out way too much at one time, and I have no idea how he even saw past that diarrhea of the mouth nonsense I had going on back then.  ( I have thought about why I would do that, it wasn't for sympathy...I think I truly was just hoping to find someone who cared...who could listen without judgement. He was one of the rare souls who didn't judge)  he had grown up in a normal family and had a normal life...I was like this real life hot mess he had in his passenger side, and somehow he was interested enough to send me flowers the next day. (okay, he knew I smoked,so there was a prize at the end of my over sharing he was thinking about, lol)
 We set up a date .....this would be my FIRST real date.., and he took me to the beach...without going into the details...Herb was a truck driver, so I had the house to myself most nights...and well...I smoked.....and his theory was accurate..LOL.
 This continued for weeks, we spent all the free time we had with one another.. He took me out a few times, and we spent every night Herb was gone together at my place...and it was pretty amazing.....then the trip to the Emergency room in early November....

 I had been having discomfort, and it was getting so bad, I needed to get treatment.
Kaiser at 10 PM...always a fun date..but he took me with no complaint.

 David didn't go in the room with me, it was too early in our "relationship" to have him in there, that would have been awkward.... I am examined, and given a prescription for what ailed me...and then she said..."so, how far along are you?..... WHAT????? Hold the phone, what????????  I mean whaaaaaaaaaaaaaaaaaaaaat? I think for a moment I didn't even realize what that meant. I may have been through the ringer with family...but I was still quite naive, young minded, and unaware of most reality.
 I had the nurse bring in David as I waited for the Dr. to return. I was so nervous, scared, and so unready to accept this. I was seriously  in a state of shock. He comes in, with concern and care on his face...I didn't even have enough sense to sugar coat, delay, or keep my mouth shut for even a few days....nope...I looked at him, and in between tears said "I'm pregnant"
 He never asked....is it mine...either he was as shocked as I was, or just assumed it wasn't his. we were only together a few weeks at that point..the Dr. returned because now it was no longer just about what took me in, but now a prenatal visit.and we were told after using the cardboard dial when I most likely conceived and when I would be due...FIRST DATE...REALLY???.. are you kidding me......are you kidding me.....OMG. I think he hugged me, but I honestly don't recall much of that night after "so, how far along are you".

 We drove home...and he dropped me off...and I had no idea what that future held.. Let's be honest. We were NOT in love, we barely started hanging out...to be frank, I truly believe the only reason I wasn't a one night stand for him is because I had the apartment pretty much nightly, and he was your average blue blooded 20 year old walking hormone...lol, true statement.
 I don't know when I called my Mom...or when I called my Dad...if it was immediately, or not.. I do know it was Thanksgiving weekend I was once again homeless. As history seems to repeat itself in my life...Herb too,  had had enough of me.
 The pregnancy was fully known by all needing to know parties now, and Herb was just done. My parents could not or would not help. No one said come home..let me take care of you, help you, or be there for you...my Grandmother was so disappointed, and still unable to forgive the sin... the only place I had was David's parents.and NOT because I was "supposedly" pregnant with their grandchild. (let there be NO mistake, they never for a second during my pregnancy thought this baby was David's)  but  because they were amazing, Godly, and loving people, who would never put out a pregnant underage girl . They had allowed me a bed for awhile. David slept in the front room on the floor...and I was in his bed. Being a Pastor..me living there  caused some issues of course, and my time there was weighing heavy on them all. It wan't a permanent fix, and we were all aware I HAD to find somewhere else.
I kept contacting my parents trying to find a place to call home, and get the love and care I so desperately needed. I was ready to be a "kid" again...things got scary and REAL...real quick, and I wanted to be with my family.
 The call back from my Father finally came....
 He,  being the responsible and loving parent a teenage girl needs so badly.......had rescued me...okay actually he rescued himself and found a way out of having to take the responsibility of his minor child that he had actual legal custody of once again....the great dad.... found THE DOOR OF HOPE...a Salvation Army unwed mother's home I could be placed in. That was his answer to my question, "Dad can I come home"...WOW.
 I checked into this "home" in January at 13 weeks pregnant just as 1990, the year I was supposed to graduate was getting under way. To put the length of time I would be in this place...most girls were coming in at 5-6 months pregnant when they could no longer "hide" the baby bump. I was there before I even started showing.
 It was a free service to young mother's..I was even given a 10 dollar a week allowance...woohoo. My dad did good...got himself off the hook once again, not costing him a penny. Most of the girls that were there were foster children with no real family and very few had baby daddies to speak of. Here I was...had a Mom that should have been at least morally responsible for me and a father whom was legally responsible...but there I sat...with a hodge podge of lifestyles I had never been exposed to, Which at the end of my stay at the DOH light will be brought to that statement.
 Back to the man...Here is where it began. He lived in Lakewood...my new "home" was back in San Diego where I originally came from. That's over 100 miles apart. I say this is where it began...because this is where I found out just who I was dealing with, and what kind of a man he really was. It's easy to "play" a part when you are living with or even near someone...I was now out of sight, out of mind. I felt abandoned YET again by my family...and dealing with a pregnancy I had not anticipated nor had even a solid and real relationship with her father to feel any stability with that situation...what would become of us? I really had no hope for anything more to follow after he dropped me off and said goodbye. I was a ticking time bomb. Flooded with emotions, Rage was at the top of that list.
 David was driving to San Diego at least two times a week, and he will remind me often that once he did it twice in one day...I forget under what circumstances, but I am sure I was freaking out to some degree over something. That is what I did. I was PISSED off...and he unfortunately was my available target.  He was always there...he pawned everything he had if he needed to just to get the gas money to drive the 200+ round trip miles to make sure I was happy and taken care of best he could! Yes, he missed Dr. appointment's and sonograms...but he lived 200 miles away...and yes, I held everything against him...even the distance.
 Oh... I was rotten, I know it...I was needy, demanding, inpatient, and overall unpleasant. I was "THAT GIRL" who would tell him to get the hell away from me...but the minute he did I would become a psychotic lunatic in fits of rage and tears...ya, I was NOT an ideal girlfriend, I was the kind anyone else would have RUN as fast as they could from  ..I know there are reasons from my past that made me so crazy. I had a very hard time accepting that he actually cared about me, but I also KNEW...he cared about this baby growing inside of me so much more than he did for me. He had proven to me over and over again....he was NEVER abandoning HIS child...maybe a part..a sick and deluded part was pushing him away so hard just because I knew (thought)  he was lying...and would eventually leave her and me too...may as well do it earlier rather than later...I don't know...Many of these years I have blocked and tried to forget because I know just how cruel and hurtful I was to the man who was doing everything against what I saw as "normal" from what I had gone through with my parents. I just couldn't believe this was real. After I couldn't PUSH him away...and believe me I know now that I was trying...my thoughts changed from abandoning the baby to a conspiracy theory that made my behavior, attitude, and anger worsen....Was he only being good to me so I would have my guard down after the baby was born and then he would take her from me since I was so screwed up in the head...all the thoughts that go through a mind of a teenage girl that has never really had stability in years....can turn her into something not so pretty. daily thoughts of how he couldn't love ME, how could he with how evil I am, and hateful towards him..he only loved this baby...and this baby is MINE and I'll be damned if he is going to "fool" me into a comfortable state so he can STEAL her when she was no longer MINE  and only mine...and became ours,,,BIRTH...that....was my most absolute fear.
 He continued to stand by my side...no matter what I threw at him, what I said to him, or how ungrateful I behaved. I look back now, and if there was ONE thing in our relationship that I wish I could have a do-over for...it would be that pregnancy. It in fact set a dark tone for our entire relationship to come. We can say things and take them back...but that damage will forever be there. I am sorry for that. I truly am sorry. I was self sabotaging the hell out of not only myself, but my child...that was NOT my intent, but the look back...that's where I see just how bad I was to this guy..who was just doing the "right thing", for this screwed up, hurt, and scared girl.
 About 7 1/2 months into the pregnancy there was an altercation at the "home"... a young 14 year old gang banging hood rat...(no really...that is the best way to describe her)...got into an argument with me over I have no idea...after words exchanged she came at me with a knife towards my stomach and I just pushed her away...she was sent back to a state group home...I was evicted from the home as well...for fighting. That wasn't a fight, that was defending my unborn child, but whatever.
 Here I go again, calling family and trying to find a place to call home. Finally my Mother after all these years said...come home to me....My heart couldn't even stand the emotions, I thought it was going to burst....my Mommy was there for me!!!!!
 David was still by my side and came and moved me out. Funny how I was actually sad to leave this place that I hated so much months before. we all had become quite the family.I was at my Mom's for about a week, and she took me to get on welfare. I was denied...because I am 17 AND SOMEONE ELSE IS LEGALLY RESPONSIBLE FOR ME...duh!!!!!! Minor child here parents!!!!! Why can't anyone who had a part of my being created realize I was STILL their responsibility??? Well, for whatever reason, and yes this still hurts to this day, she said I could NOT stay with her... she couldn't afford me. (bullshit...but whatever). My faithful and amazing Grandmother, opened her home back up to me...and I lived the rest of my pregnancy with her. David, still coming every weekend and showing his absolute dedication to his child. He made believers out of everyone but me, he was STILL around...everyone was just so in awe over him... I still had no trust he wasn't plotting to take my baby...there had only been one man in my life who hadn't disappointed me, hurt me, or abandoned me...and he had passed away when I was 16, my Grandfather. Beyond that...TRUST NO MAN....Even though he was STILL here...I didn't trust there wasn't a reason behind it, and in my mind that reason had NOTHING to do with me.
 In July 1990....check the records...the HOTTEST damn summer in California...I was waiting for this kid to come out. living with my Grandma, still having David coming every chance he had, I was still being a frightful mess to handle, and he was still somehow loving me through it all ...I had.everything but a baby. It was hot, she was late, and I was DONE being pregnant.  I know for a fact everyone in his family expected this baby to come out in June and I pull the "she's premature card"... but that satisfaction would be MINE....
 On an extremely HOT Friday night about 10 PM this 17 year old who had held on so tightly to this baby in her belly felt pain I had never even anticipated....My Mom came once I called her, she then called David's house to let them know I was in labor. David's Dad, being the unhappy about the situation kind of guy responded with..".okay, well thanks, I'll let him know when I see him."
ya.. it's the kind of love I got (being a cheap dime store whore and all trapping their son)....David's mother got up out of bed and began the hunt for her son....what I have neglected to mention is my dear Dave...was quite the party guy,,,and she had to find him...go get him...then drive him to Riverside...because she IS amazing, and knew better than to just roll over and go back to sleep. She finally located the drunk Dave...soon to be father...and drove him the hours drive to Riverside.

 David literally arrived just as it was time to push (I was fit to be tide...angry as all get out...because of course...HE LET ME DOWN as all others had, and was not THERE for the process, he was there for the "good part":...I keep it real as I can, and I must say, I was not the most gracious laboring Mom to be)   and then all that anger, hurt, and disgust for him just stopped...on a dime kind of stopped....
 at 6:01am on July 21st our daughter Keralynde Yvonne was born. 

 David had a look on his face the moment he looked at her, that I have never seen again...he may have been drunk when he arrived by my side...but the birth process....that sobered him up right quick. He looked at this perfectly pink pudgy baby and held her as though the world stopped for as long as he needed it to, to take it all in. Her face, her fingers, her scent...it was the most beautiful thing I think I have ever seen. We were both so young and dumb...we were NEVER  truly prepared for, or had ANY clue what the actual real live baby would do to not only our hearts individually....but the bond that was created at that very moment between us. She was not a piece of a game any one was playing...she was OUR child...our daughter...with my eyes and his chin...a perfect blend.
 David fell in love with his daughter at first sight...he even looked at me differently...almost like everything I had put him through the last 9 months was almost worth it....ALMOST I say, cause I was NOT a very fun girlfriend to have. Maybe he was hoping all that ;raging bitch" behavior was hormones...and he thought the worst of it was over.....Bless his heart....lol
 I took Keralynde home to my Grandmother's. and that MAN was still there every chance he had. Still pawning, selling, and borrowing just to get to us.  he bathed, he dressed, he fed, and he changed. He was a wonderful Daddy....(I still gave him little credit, cause it's easy to be "GREAT" when it's not daily...so you see, I still hadn't become this nice sweet girlfriend.) I know better now of course, all these years later... but at the time...I expected him to marry me and take care of me. Who cares that we hadn't even been together a year...who cares he had no job and no money....who cares he was 20 and I was 17..who cares we didn't even get along..he NEEDED to take care of me, because I couldn't on my own...and definitely not with a baby. If I got kicked out again....and it was the history I was used to, so i anticipated it...where was i to go...with an infant??? I needed that security.... I fought for THAT security....he was not buying into it...marriage was NOT an option.

an amazing daddy...from the first moment of her life

(there are no photos of US with Kera as a baby...in one of HIS finer moments all pictures with Me in them were destroyed...YUP, it was like that lol)

Our relationship was rocky at best. It was seriously a 'what the heck are you two together for" relationship. he got to go home after a day or two with the baby and I and be SINGLE....party, drink, hang with friends, locked up in a mexico jail for a few days one time, and a couple back to back DUI's (one while his daughter was with him on that weekend)...and I was at home...WITH HIS BABY 24/7. ...   yes, I was angry, I was bitter, and I was NOT being quiet about how I felt. Again, no matter what I said or did...he was still there every weekend with his daughter. He was still there making sure I didn't feel abandoned or deserted. When David was with us...he was with us...but when David went home...David would be doing "his thing", and that "thing" wasn't holding a job, or securing an income for a future, . This was my main complaints and our most  often visited fights.

 I didn't come by parenting naturally. I had a difficult time with figuring it all out. My depression, my age my lack there of a family life, and mental issues were of no help. David kept me grounded for the most part, so you can imagine when he and I were NOT good...I was now an even bigger  mess...with a baby. he truly was the backbone of everything in the beginning.

 Our relationship continued in the same exact fashion it had since the beginning. The fights were more frequent than the peace....the bad outweighing the good by a long shot...but we continued with it. His child....and his child having BOTH parents was THEE most important thing to him...even though we were miserable for the majority of it with one another...there was this beautiful girl that made every moment worth it.  so ,we managed. Kera was the glue...I knew it...he knew it...and she was the most loved lil girl ever. Her bright blue eyes and curly blonde hair...watching HER grow...was OUR best times...we were raising a daughter! She was our one and ONLY thing in common.

 In June 1992, right before Kera turned 2...we did a crazy thing...no job, no money, still didn't get along for longer than an hour or two at a time ...got in the car...drove to Vegas..and got married. We went and turned a bad situation and made it WORSE. People have asked me...why'd you get married?? I answer jokingly, but quite honestly it's the truth... WE WERE BORED. It wasn't planned, there was no plan of action once it was done...we just went...we did it...and as unplanned as our pregnancy was...as was our marriage.
 He moved in at my Grandmother's and our family life began. David never really had a job since shortly after I met him....temp jobs here and there, but the party guy  in him was always more important than an income. The day we married....is the day he killed his past and started working on his future. If I thought he took his Father responsibility seriously...I hadn't seen anything yet. This flake of a guy found a job quickly, and has since then always worked. He showed me something I did't even know existed....he took FULL responsibility to ME. He started off with a little job, worked til he found a better job, then a better job...so on and so forth. He married me...he planned on taking care of me. First plan of business,,,we had to pay off welfare for the year Kera and I were on it. His parents did that for us as a "wedding" gift. We were free from all debt...and time to see if we could make it better as man and wife than we did as boy and girl friend. You know they all said it would never last! :o)


 Being married to me....was no easier than dating me. I don't know why I was so difficult, but I was. He was no walk in the park either...and our two complete polar opposite personalities were about to collide with no one able to go "home" and cool down...we were stuck together in the same house day in and day out for the first time. The relationship we had during my pregnancy and the first two years after were NOTHING compared to the battles that were to come in the everyday married life between 2 people who had NO business even being friends, let alone married,.
We managed our marriage as impulsively and immaturely as our wedding day. There was no consistency in how we treated one another or to how we parented our daughter. There was a power struggle happening...and I became "kept". I had no job, not even a drivers license, no friends, and he RULED my life...I could not do anything or go anywhere without him or his approval. I was miserable, he was miserable, but we kept on. Physical to a degree, but verbal and emotional abuse was flying freely and loudly. We didn't realize it then, either being too young and dumb..or just too stubborn to give up,,,but we TRULY had no business or right to be married. The love we had for one another then...was NOT love for each other, but love for being the other parent to this beautiful little girl. HUGE MISTAKE...not recognizing the everlasting effects that it could have on the child.

on our first anniversary June 15, 1993

we had a wedding ceremony with our friends and families 

invited to celebrate with us.

 I DO take some of blame for our problems now, However; I took it ALL as the relationship evolved the first years, because I was the one who was messed up and came from a messed up family it had to be MY fault.. I took the blame because he made me feel as though I was the problem (he was normal, I was not). I know the things that I did and said were wrong, but this guy was no angel...but because  he was a real MAN. A man who didn't turn away from his responsibility as a Father, even though I gave him plenty of reasons to. He stood by me, he stood up to  me, and he was NOT going  to hinder his daughter's future or happiness and take the easy way out just because I was a nightmare.... That is where my vision of our relationship got distorted.  I should just be grateful he's here...and thankful he's providing a life...and quit bitching....So yes,
I very early on took 100%  responsibility for our horrible relationship, I was the problem, I was the one who was unable to get along. I was the one who was unwilling to just be happy and enjoy life....He was a jerk, unkind, selfish, and straight up mean ...but yes.... I was the problem....because...he was STILL here, and I was absolutely undeserving! (the thought process way back in the day)

Taking and accepting all of that responsibility ...gave him so much POWER as the days, months, and years went on. I didn't know it then...but I had created a problem and set the tone for our future, that he was good, I was bad....he allowed me to be the "bad guy","the mental case" and he got to  be the selfless victim who put up with the biggest B word in history.... these would be our roles for YEARS to come...until I woke up and saw the BIG picture, and allowed myself to relinquish all blame for everything BAD in the world.
 This realization was still many years away...but the moment it came....things finally were going to get better. The GOOD finally starting catching up to the BAD on the balance scale, where the bad had always been flat on the surface as though a brick were weighing it down.

 A summary of the beginning....I was yes indeed a misguided, angry teenager who was used to the people in my life giving up on me...he was  your average young guy just  looking for a good time....that good time created a baby...and that baby created a family. We had our order of events screwed up, we had our minds so far ahead of our hearts....but the VALUE of family was always the concrete level of this journey.  His devotion to have his family together, and mine to NOT repeat a cycle that had failed me....FAMILY...we were going to be a family....even if we had to FORCE it.

We were set up for failure from the beginning.  We didn't know eachother well.  We were not in a real relationship. .we would never had stayed in a relationship longer than a few months. ...we were incompatible and not in it for more than THRILLS. ..everything changed at the emergency  room when my pregnancy was brought to the table.  With all odds against us. ..we took what we had. ..what little it was. ..and worked from there. 

From 1989 to 1993 we took every day as it came...raising our daughter, getting to know one another, trying to NOT hate more than love one another, and making the decision to HAVE ANOTHER CHILD...because we were soooooooooo much better off now....laughing out loud. Not much had changed in how we got along, or how we didn't get along to put it better,... but we were set on doing it the "right way"...and experience pregnancy and birth from a better point of view than we had in 1990. A planned pregnancy with a married couple....had to be better...right?!!!