What exactly am I waiting for??

[addicted2harleys]

Oh my Gosh, this email is really long!  I just re-read it for spell check and wow.  I must have really needed to get some things off my chest.  Sorry...

I DON'T want to have MS.  I don't want to have ANYTHING for that matter.  But, even though I do go through the denying periods, the fact of the matter is that SOMETHING is wrong...and it gets worse and worse.  

I think this is what scares me the most.  I used to have a social life...I don't now.  I used to go on bike runs...I don't now.  I used to work...I don't now.  I used to go camping...I don't now.  I used to drive...I don't now.  I used to have a pretty damn good dating life...I don't now.  I used to take showers for granted...I don't now.  I used to be adventurous...I am not now.  I used to be able to have a drink or two with friends...I can't now.  I used to be sure of myself, self-confident...I am not now.

I used to resist taking even a Tylenol for a simple headache.  Now, I take a handful of pills 2 times a day just to get through the day!  How much drugs can one body take???

I WANT MY LIFE BACK!  All of the things I have lost are BECAUSE of whatever is wrong with my betraying body....not the other way around.  I tried to stay in denial that anything was really wrong with me....that crashed down around me like dominoes.  

When I look back at the last 5 years of my life and see everything I have had to give up and/or lose and/or miss out on...well, I get angry!  I have a chair in my shower, sleep in a hospital bed, use a walker, wheelchair and scooter.  I take some pretty potent drugs...but there is nothing wrong with me??

It is all in my head...I am faking it.  That one really threw me for a loop.  Okay, I am faking it.  I have TRULY looked into this.  Hell, if it is all in my head, then I can make it go away, right?  I tried that.  I pushed myself to do things that I really enjoy...in all honesty, that was dangerous.  If you have strength and balance problems, should you really jump on a motorcycle and go??  Or drive with kids in your car and innocent people on the roads with you?  Or climb that rocky slope to get a better view of the ocean?  Mow the lawn (yes, I do enjoy doing this)?  Skydiving??  The list goes on.  I tried to get my life back.  I failed dangerously and miserably.  

I went to a shrink.  Guess what, I was told that I have such a good head on my shoulders and I am a very strong person.  Hmmm.  Is that why God has chosen me for this &%*# that is going on with my body??  Because I am strong enough to handle it??  I don't want to be strong anymore!  I want to be NORMAL again!

Pull up your boot straps.  Hmmm.  Okay.  I take that to mean that I need to push myself.  Even when you think you have had enough, keep at it.  So, go out in yard, work up the soil, weed and get ready to plant new flowers, grass.  Work 2-3 hours and then down for 2 days.  Did I get the wrong size boot strap?  Mow the yard...left unfinished and down for 2 days.  Is this boot strap defective??  I can't figure out the boot strap thing...I may need lessons.  Which specialist do you go to for that?

Okay, denial didn't work.  Move on to acceptance.  Learn to live life to the fullest and don't let your issues run your life.  How the heck do you do that when someone has to help you off the toilet?  Or people (adults are must worse that kids about this!!) stare at you because your head is wobbling off your neck and you look drunk??  Or you decide that a walk along the beach would be wonderful....only to find out you need someone to carry you back off the sand because your legs/feet don't agree with the texture of it??  Take a drive up the coast with family.  Should be nice and relaxing day.  Check out the sea lions....can't get out of the car when we get there and the path doesn't work for wheelchair either.  Can't see the seals.   Drive kicked my butt.

Independence.  That one is a really really hard one for me.  I have been fiercely independent all of my life.  I have never leaned on people, always relied on myself.  I have always raised my children and have always been self-sufficient and financially stable.  That all changed 5 years ago, too.  I have gone from GM of major pet store (very fast paced and extremely rewarding for me) to living with my mother because I cannot support myself or my daughter any longer.  And, physically dependent on my mother, too.  I feel like I have ruined her life.  I went from working 60-70 hours a week (and loving it) to nothing.  Now what do I do?

I am having a very difficult time with the acceptance part.  I don't WANT to accept it.  I am told I have to just be patient and wait.  Ummm, wait for what?  For how long?  Is the waiting game actually hurting me from getting some sort of treatment that could have slowed down whatever is going on and now that I have waited 5+ years, it is too late and I have to ACCEPT the wheelchair as a part of my life??

I have always been aggressive when it comes to getting things done.  I try so hard to be this way with whatever is going on with my body.  I hear something that could be the cause of my problems and I thoroughly look into it and test for it, if applicable.  Everything comes back to the same beginning.  Negative test results, doctors that shrug you off or tell you to wait.

More testing??  Oh, boy.  I am petrified of needles.  I joke about being allergic to them.  This is the main reason I don't WANT to have MS.  I am NOT a good candidate for it.  I have had 2 LP's.  Both done 5 years ago...no MS protocols....results normal.  Numerous MRI's...all normal.  Nerve test...normal.  Two exacerbations (BIG ONES) since my last MRI.  So, do I break down and get new MRI's....and LP?  More needles...And, then I tell myself they will just be negative anyway, so why even do them?  Yet, I really do want answers.  If my tests are always normal, then why aren't I normal??

Can someone tell me what it is exactly that I am waiting for??  I have never really been a patient person.  I think I have been pretty darn patient with this junk going on.  I don't want to be patient anymore.  I want my legs back!  I want to french braid my hair!  I want my life back!  All I really want is answers...maybe then acceptance would be easier?

Angry and drained and definitely not normal...
Addi

[shermay]

Way to go Addi :)))

You hit the nail right on the head, because we have MS, it doesn't mean that IT has US :)))

We are still the same person underneath all the problems and situations that we have to face, in fact, I think that it makes us stronger!!!!

Yes, after all these years I have acceptance........and  yes life can deal us a bad hand, but we HAVE to move on and take what we have been dealt!

So it's my old adage from a good friend in LA.,

We are Women, we are strong, - sorry for any blokes who are reading this:)))))) nothing personal:)))

Never ever give in Addi OK???  

Hugs

Debs xxxxxxxx

[addicted2harleys]

OMG Jess!  The fork!  lol  Gosh, I love to laugh first thing in the morning.  It seems to make the day that much better.  So, thanks!  Give your hubby a great big bear hug (use a tablespoon for it!) from me for that one!

Mentally, I am doing much better.  Thank you for asking.  I got a bit overwhelmed.  I feel kind of peaceful right now....tired but peaceful.

Debs - Thank you for your post.  It is exactly what I need.  All of my life I have used to poker way of thought:  It doesn't matter what cards you are dealt, it is how you play your hand that matters.

I ended up folding the day I posted this.  I have been flaring for about 2 months now, so I think that might have been part of it, too.  But, I was dealt a new hand and I am working through this set of cards.  One of the cards has an MS Specialist on it.  

It sounds like you have definitely crossed over to acceptance.  I think I just needed to realize that just because you accept doesn't mean you do not have to give in to the disease.

I am sorry that you have the problems that you have.  And, the loss of your father...well, I can definitely see that sending you into a relapse.  I feel for you.

Thanks again,
Addi

[addicted2harleys]

Ren - I spent the summer in FL two years ago.  I still remember the heat/humidity.  Whew!  I feel for you, girl!  I agree with you that acceptance is coming for me, too....just not as quickly as my family (and me too) would like it.  I think my family has accepted it way more than I have.  

I am so truly happy for you finding the right neuro and he gave you what you needed.  I hope I get the same when I finally get down to USC.  

I am gonna go check out your pictures right now.  A lil bit of dark humor never hurt anyone!  :0)

Twopack - I printed out the spoon theory.  I plan to share it with people that are close to me.  I am very glad your hubby "got it" and I am sure it will last more than just those few minutes.  

I am walking right next to you right now, it seems.  I am beginning to realize all that I have lost and, in all honesty, probably won't get back.  I think that is really why I posted this when I did....the realization was happening.  

That was why when I read the HT on Acceptance, it really struck home for me.  I realized that that is what was going on with me...and still is.

I think we all need to remember to nurture ourselves.  We have all lost out on some pretty big things.  I guess we need to mourn the loss of it.

Dennis- I had to laugh when you mentioned the passing out part.  Been there, done that.  lol  A friend of mine was hit by a DD, head-on.  We were both 17.  My first visit to her hospital room overwhelmed me.  So many tubes and needles.  I passed out and pulled her IV right out of her arm.  

I pass out for blood draws, too.  I am opposite of you, if I see it, the darkness comes.  Heck, I am getting the willies just thinking about it right now!

I think you should carry the Epi-Pen.  And, make sure it isn't expired.  Someone else can always do it for you!  Better to be safe!

Hugs to all for your support when I really needed it...

Addi - thinking happy thoughts...no needles, no needles!

Addi - being stingy with her spoons right now!

[shermay]

Hi Addi,

What a thread:)

Come on sunshine , you can do this - life is a challenge that we all have go through, and remember we only get one shot at it.

When I remember back to my dx 11 years ago now (do go get a MS Neuro ok?) I went through:-
Numbness,
Crying,
Shock,
Panic attacks,
Total distress,
Feelings of failure,
No, not me!

Then one day a close friend came around who was an ex district Nurse, and showed me how to make flower arranging for Christmas - (I'm a Horticulturist btw)  boy was I back on track again.

So I got off the pitty pot, and found something to do for Christmas (while waiting for the deliveries of bedding plants in January).

Fast forward to now. My Father (who died last June) sent me into a major relapse, now this is ME now talking, a very determined person who would NOT let anything get me down, NOTHING!!! I 'was' a downhill racer on my Mountain Bike - 20 miles A DAY, and then suddenly wham!!!  I have days when I can barely walk or talk.

Problems with my number ones and twos. but each day and I really do mean this, each day I put my best foot forward and carry on.

NO.  I will NEVER be the person I was back last year, yes I have a walker, my Husband helps so much with my youngest Son.

But this is now, and this is me, and if anyone doesn’t like the person I am now, well they are not welcome in my corner of the World.

Phew:))))  That took some serious typing, and to get away from the MS brain fog:)

But really you need to get yourself off to a good MS Neuro Ok???

Debs xxxxxx

[lovemy6monkeys]

Addi,
How are you feeling today? I hope you are a bit more at peace. This is such a tough disease. Such a tough thing to go through. I just wanted to give you some virtual ((hugs)) and encourage you to vent here whenever you need to.
~Jess
P.S. When I first started feeling symptoms I was told about the spoon theory. It helped my DH understand what I'm feeling. And, sometimes he brings it up in the morning of our weekly Date Night as he leaves for work, saying "Don't use too many of your spoons today. I'm looking forward to a fork!"

[Sailorsong]

Addi,

   I can relate in a way to your fear of needles. While it doesn't bother me at all to have blood taken or shots in the arm...for some crazy reason if I don't see the needle coming ( IE in the rump) I will pass out. I have no idea of why this happens...And actually when I am watching them give me a shot 99% of the time I don't feel anything.

One other thing about shots and me. I am very allergic to bees and wasps...as in if I don't get immediate medical help I will die. The first time I got stung when I walked into the ER they didn't even bother getting any info on me..just rush me back to a exam room and started pumping me full of meds and immediately brought over one of those crash carts. You could literally see my heart pounding right through my shirt and it was not a tight fitting shirt. after about 3 or 4 hours they finally sent me home..but I was back at the ER within another 4 hours having a second reaction that was just as bad as the first time from the bee sting. This same thing has played out every time I get stung with the double trips to the ER.

As a result I am suppose to carry an epi-pen with me at all times...but I never do. No matter how bad I get after a sting I just can't bring myself to giving myself the shot. I have been gasping for breath and still not able to give myself the shot. So here I am very much aware of how you must feel.

Dennis

[siv1]

The link is a life saver. thanks. you are right about how you can't fool yourself. I hate the fact that I can't do things I used to do, but I always tell to my self atleast i am still living and doing things on my own way. It helps me alot to just say it could be worse and get along with the day.

[twopack]

I asked my husband to read The Spoon Theory tonight (he's back after being away since Thursday).  I told him beforehand that it is an accurate description of what life is like for me now.  He came and kissed me when he finished reading...mumbled a few words that I don't remember but it doesn't matter.  That reaction told me he 'got it' for at least those few minutes.

It's beginning to sink in real deep that I'm not going to see any more days when I feel like I used to.  The good days (physically) are behind me now.  I can still fool some of the people some of the time.  I can't fool Mary at all any more.

Mary

[rendean]

I missed this thread as I was on "vacation" in  FL. Addi, you and RF have put into words the emotions and anger that I have had. Acceptance is coming, but too slow for my liking.

I was plagued with symptoms for 5 years before a gallant , older MS neuro took a leap and gave me the dx. He wasn't dependent on MRIs as he learned to dx MS before MRIs were used in diagnosing the disease.  My symptoms have increased and now , everyone who denied me now says "Oh, I guess it was MS". Yes numb-skull, I tried to tell you before.

Twopack's link to the Spoon Theory is fantastic. I enjoyed it very much.

Hang in there. Take one day at a time and know that anger spent is energy wasted. Not that I haven't spent a lot of energy on anger myself but it's what I would tell one of my friends or family. Easier said than done, I know.

You are committed to fighting what ever is wrong with you. This is a good sign. Just don't use up all your spoons to quickly.

On my profile page , under my photos is a cartoon you might enjoy. It could be construed as dark humor but I personally loved it.

Ren

[addicted2harleys]

Okay, I am back on track.  Thank you all very much.  I really needed to hear what each one of you said to me.  I also went to the Health Pages again.  I found one on Acceptance.  That one seemed to put my heart and nerves at ease.  It really helped to read it and I learned some things that I believe I had been overlooking...if that makes any sense.  lol

I also went and read the spoon theory.  That was ingenious.  I loved it.  I may have to give that one a try.

Twopack - Thank you for reminding me to keep getting my facts together (I have been doing that) which also reminded me that I still want to do a timeline (dr. kind) before my referral for USC comes through.

I KNOW I will get through this.  And, I know that I will find the answers, no matter what they may be...or when.  

I did get my daughter outside to help me.  My yard looks 90% better now.  That made me feel good, too.  Ah, the little things...right?

Thanks again, all of you....and I hope I can return what you gave to me today in your time of need...

Addi

[RedFlame]

Absolutely, let's hang in there together.  We can cry, problem solve, support, educate, give strength,and laugh together!  
lois

[twopack]

Ranting is a wonderful thing but it isn't a solution so won't help you feel better in the long term.  This type of post can be very helpful though in helping you get the facts together for a presentation to the doctor about symptoms and their progression.  

Many of us can relate all too well and are glad to listen and be supportive.  Wind&Water is giving you some very good advise IMO.  If this doctor is in your area it seems like the perfect place to start.  Otherwise, maybe the doc can give you a name for a referral.

Have any of you heard about the "Spoon Theory"?  It's a way to explain to others just what it is like to get through a day with a disease like MS (although it was initially used to illustrate Lupus).  I'll try to post a link but if it doesn't work, it is well worth googling to read.  I'm sure you will have to copy and paste in your browser.
http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

Show that to your wife Siv1.

Mary

[addicted2harleys]

Boy, oh boy, did I open up a waterfall.  Maybe I did just need to get angry and then cry.  I don't think I have ever taken the time to cry over all of this.  I have been too busy trying to HANDLE it.  And, too busy trying to show my strength for my daughter.  I guess I want to make sure she sees that I am okay...does that make sense?

Boy RF - You opened up my tear ducts.  Everything you said, I can relate to.  I needed to hear that.  Maybe I should take a break.  But, I don't feel that I can right now because I really am lining up different doctors to try to find something to help me.  

But, I just asked my daughter to come out in the backyard with me and help me spruce it up some.  I will only be able to sit there...she will have to do all the work.  But, I worked so hard (before this exacerbation) to put flower and veggie garden in and plant grass and weed the yard.  The yard was one big weed - fill when we moved in here.  She has agreed to help me.  So, that could be a little break for me.

RF, ask for the pain meds.  No one deserves to live in pain.  I did give in to this one, and I used to feel the same way you do.  I finally realized that I needed to function...so I took the pills.  You are not a "pill seeker" if you are not just taking them to get high.  I am not on narcotics, btw.  I do have Vicodin that I take very very rarely...most of the time the bottle just sits there.

Wind - I have found out that there are no MS Specialists in my area.  Closest is Los Angeles and I do have a referral in the works for that.  And, they have a 3.0T MRI machine.  If that falls through, I will go to San Fransisco.

I also have referral to speech therapy, they are coming here next week.  And, I have referral to audiologist following week.  If I remember correct, EP can be done through this, right?  I am after getting these done.  I can't seem to get into an opthomologist (insurance reasons)...but am still trying to figure that out.

I think I am just feeling really overwhelmed with all this...even though I think I am heading down the right road.  I just have never been a doctor person and hyper-fear of needles...so all these tests and visits and and and...see, I think I just feel overwhelmed.  lol

siv - thank you!  We can hang in together....ok?

Thank you, all.  From the bottom of my wet heart.  

Addi

[siv1]

Hi,
sorry about how you are feeling. I am fighting with explaining to my wife everyday practically, yea when i say i can't keep my eyes open and fall asleep after a 7hrs sleep, she tells me, i should walk around and stay awake and lay down at night to keep a routine sleep.  It is not easy to deal with, but  all i can say is just hang in

[Wind_and_Water]

In your journal, you said, "My MRI's have not been done with MS protocols.  I haven't had any evoked potentials done."

I suggest you ask your twin sister for the name of her neurologist that diagnosed her with MS.  Contact him/her and introduce yourself in just a short paragraph or two.  Mention that you never had an evoked potentials test nor an MRI with MS protocols.  And ask him/her if they would consider seeing you.

This might put you on the right track.

[RedFlame]

Addi,

I am soooo there with you right now.  I am angry and sometimes feel alone in this horrible ‘limbo-land’ illness that I can’t make go away.  There is no name for what I have and there isn’t a pain medicine or treatment that will make it go away.  I feel ashamed and embarrassed of myself because I have lost my mobility.

I can’t explain something to people that sounds so odd.  I didn’t tell ANYONE for nearly a year about the parasthesia, tingling, fatique, Hug pain, balance, falling, clumsiness etc. etc.  I mean who goes to a doctor and says “I can’t taste my food, “my face is numb/hypersensitive”, and “I reach for the glass but can’t grasp it because it’s further away than I thought”.  I mean who goes to a doctor and says that?   It just sounds crazy to me.  So I waited because I thought “it’s all in my head”.  I waited to long because now I just continued to get worsen.    

So I must be crazy.  So I went to a psychiatrist and told her I have Conversion Disorder---she said no, then I said I had Factitous Disorder, or maybe Malingering.  I want this to be crazy. Then I could go to therapy and make it go away.  No there is no Secondary Gain that would even be possible in my life, nor is there any type of gain from this.

I too have tried the ‘make myself’ do things that weren’t safe, ie driving, cooking with oil.  Didn’t work and paid for it.


I too have questioned every possible way out of this horrible mess that has become my life.  

I am so angry with the medical community.  Sometimes I really----I mean really want to kick one of these doctors in the shins.  I can’t tell you how many double binds I have been placed in with some of them.   I go to the doctors on guard for fear of what kind of cr_p I may get.


I am afraid to ask for pain medicine that might help, I might be called a ‘pill seeker”  And quite frankly I can’t take the rejection right now.  So I pump myself full of advil, Tylenol, nuprin, flexeril, tramadol, Neurontin.   To be honest, I doubt that there is any drug for this.  

THe reason I tell you this is so you know you aren't alone.

I don’t know what the future holds for you.  What I do know is that you are tired and exhausted from this painful and difficult journey.  

It's OK to take a break too.  

Rest today sister,  
lois

[addicted2harleys]

Thanks, guys.  I didn't even realize I had this in me so strongly.  I must have just hit my breaking point.  And, am grateful I had a place to express it.  

I didn't realize there were THAT MANY neuro disorders and mimics.  ;0(  

Yes, I do wholeheartedly feel that this is MS.  And, yes, I am getting the symptoms addressed.  I take 11 different drugs right now...and can't help but wonder if this is too many.  But, I do trust my primary doc and he is the one who has prescribed them all.  He has helped me get all of my mobility aids.

I do not have an MS Specialist.  But, I am working on that referral right now.  My neuro now specializes in strokes.  And, he is my boot strap guy.

I get referrals for my eyes, foot drop, hearing, breathing...and all I keep hearing is that it is neurological...and then play the sit and wait again.

The first LP I had I was sedated.  I don't remember it.  That was okay with me.  I expected the same from the second one.  The drug was "forgotten to be ordered" so I was given something else...and it did nothing for me.  The LP was a nightmare for me and has made me afraid of giving it another shot.  I really do have an extreme fear of needles.

I don't feel better yet from my angry outburst....just drained.

Addi

[HVAC]

I wish you had an answer now. I understand your frustration. There are over 800 neurological disorders and over 30 mimics to MS. Neurologist time is much slower than regular time. The wait and see approach is normal. Neurologists specialize so it is not a one size fits all if you think it MS you need an MS Specialist.

What no one tells you about LPs is they can sedate you. They gave me something which made me not know I even had it.

Are you at least getting your symptoms addressed? Ironically it is my PCP who deals with all my symptoms. The MS Specialist just looks at my progression in my case.

Yes it is good to get angry. I think all the Specialties and sub Specialties are a problem in medicine.

Alex

[Sparkysarah]

Well what is normal?  Actually I am on your side and whatever is going on in our bodies is diffficult to explain, justify and prove to others. I think we are all allowed to vent and get angry from time to time and at least we have each other to offload to.

Sorry you are feeling so frustrated and thinking of you.

Sarah