[beautytransforming]

So, posting on another thread got me to thinking about a conversation I had with DH the other day. Of all the diseases for me to get, THIS would be the one.

The things I have always had a hard time with:

Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

So, I get stuck with a disease where planning has now taken on a new meaning. I have to plan with conditions. There will come times where I can't follow through on plans. I feel like I will let others down. I have always been one you can count on.

Control... I dun did kiss that goodbye for the most part. I will control what I can when I can but realize I have to start giving some up sometimes.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been. Heck, when I was in junior high, I was my friends therapist... They would call me all hours of the night if something was wrong. That is why I became a nurse. It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

Also, you can't rely on anything BUT hope and faith for this disease!! I mean, I am a Christian, but have still had trouble with hope and Faith, even though they are the biggest things in my "Faith," I have still always had trouble with them.

MRIs SUCK!!!! I am so claustrophobic. This last one, they gave me ativan for. I put on my big girl panties and was going to try it by myself, UNTIL they said I had to have the shield on my head... Oh heck no. I almost went into a panic attack right there, and I am not a panicky person. She told me to take the ativan THEN!! LOL

I guess we do have our paths mapped out for us. I guess bad things happen that enhance our learning experiences and, well, to some point our lives. We have to take the good with the bad, and use the bad as a growing experience.

When I am dun growing, will this be over?

[Kitty]

Well, I had all but convinced myself I had a brain tumor before I got my dx of Multiple Sclerosis so......MS was my disease of "choice".

There is always something worse.......

[FinLady]

I hear you regarding this. I'm slightly claustophobic and the MRI drives me batty. I've had a few of them take longer due to panic attacks.

I will say I've been learning more about myself lately due to this. Strange classroom, this MS.

Hang in there!

[Snoopy]

LMAO - sorry, I have strange sense of humor and when I read the some of your post it just made me laugh

Trouble planning, unplannned things and not being in control - MS kinda throws alot of things out the window. Control what you can and the rest, go with the flow. Pick and choose what's really important to you and leave the rest if your not up to it.

Trust - There are very few people I trust anymore.

Faith - *sigh* this disease never really brought up faith or spirituality for me. Although when my current neuro saw my cervical spine MRI he looked and acted a little freaked out when he realized I am still walking unaided. I realized a long ago the c-spine lesion are not good but his reaction made a large impact on me. As I was driving home the only thing that played over and over in my mind was - but for the Grace of God with tears rolling down my eyes - not the best thing when driving

Hope - for the most part I have hope. Hope for a cure of this disease so my children or their children do not have to experience what this disease can do. And, I hope to live my life with dignity inspite of this disease.

MRIs - I have almost fallen asleep during them

I do believe our paths are mapped you but I also believe we have choices along the way that can change the outcome of our paths - good or bad but I am not impying we can change what happens to us medically. My life could have gone so many different ways. I have actually had a few friends and a therapist who were shocked my life has turned out as it has. I have no explanation other than guidance by a higher power.

Your posts say alot about you as a person and I think your going to do okay in you ability to deal with this disease. I suspect, in time, you will be one of those who offers support to others with MS.

[beautytransforming]

Kitty: I hope I didn't come across as complaining!!! I am grateful things were not worse, are not worse. I realize everyday this just makes me grateful for life, cause there are those who get in an accident and become an invalid without the forthought or planning for it. Heck it can still happen to any of us. I didn't think I had anything wrong, so my choice was just that... nothing. I was SHOCKED when "The mri was normal" did not come from my neuro's mouth. I am sure, had I been in your position, I would have breathed a HUGE sigh of relief.

I was just saying, I can't believe it was this... that makes me face all the things I hate!! Kinda the way Snoopy took it!

A friend gave me a card after I told her about this. On the outside, it shows a cat throwing its head in the air, seemingly laughing, saying, "Stupid dog fell in the toilet. Bwahahahaha!!!" On the inside it says, "Take comfort that someone is having a worse day than you." It cracked me up. Kinda like figuring out this disease is making me face the things I hate.

FinLady: There was about 4 times I almost hit that panic button. I just took a few deep breaths and was able to make it through. One time I panicked is when everything went quiet. I thought, "OMG, I am STUCK IN HERE and THEY WENT TO LUNCH!!!!" LOL, like that would actually happen, but it was still a thought I had. Just about the time I talked myself into screaming, the MRI started making the noises again!!!

Snoopy!! I think you are right. Once again, I will turn this into a caretaking ability. I swear, I am not living if I am not helping someone. So, why have you lst trust in people. Have you found they have not been there for you? Ack, I hope that is not the case. I don't have many friends I do trust. If I lose them, I won't have anyone...LOL

Have a great day everyone!

[Victor H]

Originally Posted by beautytransforming

So, posting on another thread got me to thinking about a conversation I had with DH the other day. Of all the diseases for me to get, THIS would be the one.

The things I have always had a hard time with:

Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

So, I get stuck with a disease where planning has now taken on a new meaning. I have to plan with conditions. There will come times where I can't follow through on plans. I feel like I will let others down. I have always been one you can count on.

Control... I dun did kiss that goodbye for the most part. I will control what I can when I can but realize I have to start giving some up sometimes.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been. Heck, when I was in junior high, I was my friends therapist... They would call me all hours of the night if something was wrong. That is why I became a nurse. It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

Also, you can't rely on anything BUT hope and faith for this disease!! I mean, I am a Christian, but have still had trouble with hope and Faith, even though they are the biggest things in my "Faith," I have still always had trouble with them.

MRIs SUCK!!!! I am so claustrophobic. This last one, they gave me ativan for. I put on my big girl panties and was going to try it by myself, UNTIL they said I had to have the shield on my head... Oh heck no. I almost went into a panic attack right there, and I am not a panicky person. She told me to take the ativan THEN!! LOL

I guess we do have our paths mapped out for us. I guess bad things happen that enhance our learning experiences and, well, to some point our lives. We have to take the good with the bad, and use the bad as a growing experience.

When I am dun growing, will this be over?

After reading your post and subsequent replies, I am convinced that you are going to do just fine. You have questioned the same things that many of us have questioned, and you are pressing onward. That takes courage and skill that you may not even realize that you have.

Something tells me that you are going to acclimate well and thrive.

-Vic

[RedPenguins]

I hear ya on everything you said- and agree and feel the same way with almost all of it. (I don't have problems with MRI machines...I'm not claustrophobic, so it doesn't get to me.)

I was just talking about this with my therapist yesterday - we all live with a question mark over our heads - it's a fact of life - we don't know what might happen tomorrow, so to speak, but we deal with it - and just go thru life planning and doing.... But now, with MS, it's not just a question mark, it's a friggin time bomb, with an unknown timer on it....it's an awful way to live - and I admire the so many people before me who have been living with this for years and years. I'm new at this....just three months now, and have not figured out "how to do it".

I don't like planning things or committing to things now. There's always a caveat of - "I'm gonna try my best to come thru - but I can't guarantee it anymore." I HATE THAT!!

I also do not do the "dependence" thing well - having to rely on others, omg, shoot me now!! Worse than hate it - I DETEST it...it makes me feel so much worse. In January, I had no choice but to rely on others to do for me - I couldn't see other than double, the vertigo was insane (I felt like I needed a seatbelt while sitting on the sofa even!)...the dizziness, the fatigue...well, you know the whole gamut. I couldn't drive...and I live in a city where there is but no choice to driving....people in LA do not walk. LOL

I was miserable, but I guess I was "too" sick to fight off taking the help - I had to take the help. Now that I'm a little better, I'm fighting it...but again, am limited in some things still (don't drive more than 20 minutes away from home, etc.).

I am also not one for faith. Blech. Where has that gotten me in life?

I'm told it takes a year or two of living with the disease to "adjust" to it....and possibly to come to terms with it. I just "hope" I can make it that long without going insane.

Sorry, didn't mean to hijack your post - just suddenly got very emotional about all of this again.

~Keri

[Snoopy]

Originally Posted by beautytransforming

Snoopy!! I think you are right. Once again, I will turn this into a caretaking ability. I swear, I am not living if I am not helping someone. So, why have you lst trust in people. Have you found they have not been there for you? Ack, I hope that is not the case. I don't have many friends I do trust. If I lose them, I won't have anyone...LOL

Why have I lost trust? It's really not about losing it but about self-preservation. I am very upfront with the fact - I have PTSD triggered by a doctor in Dec. 2003 but complicated with a very dysfunctional childhood - And life goes on

I started getting involved with MS forums in Dec. 2004. I felt I might be able to help others with MS and I needed something to take the focus off the PTSD and everything surrounding it. Trying to help others did that for me.

And, it sounds like helping others might be how you help yourself

I can't imagine you losing your friends, they are lucky to have someone so caring in their life.

[AfterMyNap]

Like Snoopy's, my reaction to your post is itemized accordingly:



Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

I have to plan with conditions. There will come times where I can't follow through on plans.

Find me any individual who can say that this is different in their own life and we'll talk about it.

Control... I will control what I can when I can but realize I have to start giving some up sometimes.

Again, I fail to see how MS makes this one so unique.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been....It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

If you're over 40, this is normal, although, it does feel exaggerated at times. I'd like to know what your mom says about wanting to take care of you. This seems pretty common to me among most of the population, also.

Also, you can't rely on anything BUT hope and faith...

Absolutely 100% true, about every thing and every person.

ALL OF LIFE is a crapshoot, ours just has a name!

MRIs SUCK!!!! I am so claustrophobic.

I agree, but I'm also happy that MRIs are but a fraction of my life, I do survive them, and do resume my life after each one. I've had about 12 I think.

I guess we do have our paths mapped out for us.

Yes indeed, and we are also blessed/cursed with a free will. It's up to us how we choose to react to life's bumps and turns.

Keep the faith, BTF, I've been doing this for a lot of years, I still do everything I want to do, I just find the ways to do those things and sometimes the challenges are steep. I'm up to it.

[slskckjebw]

Mri's and needles! If someone had told me I would some day be injecting myself into my thigh with a medication that would make me feel like I had the flu 3 days out of the week I would have told them they were NUTS!
And the extra medications I have to take. I am NOT a good medication taker. I decided if the meds don't kill me maybe they will make me feel better!
You really do have to talk to yourself and reason yourself through all of this. I am going on my 11th week with my MS dx and I think I am finally starting to deal with it........maybe.

LA

Originally Posted by beautytransforming

So, posting on another thread got me to thinking about a conversation I had with DH the other day. Of all the diseases for me to get, THIS would be the one.

The things I have always had a hard time with:

Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

So, I get stuck with a disease where planning has now taken on a new meaning. I have to plan with conditions. There will come times where I can't follow through on plans. I feel like I will let others down. I have always been one you can count on.

Control... I dun did kiss that goodbye for the most part. I will control what I can when I can but realize I have to start giving some up sometimes.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been. Heck, when I was in junior high, I was my friends therapist... They would call me all hours of the night if something was wrong. That is why I became a nurse. It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

Also, you can't rely on anything BUT hope and faith for this disease!! I mean, I am a Christian, but have still had trouble with hope and Faith, even though they are the biggest things in my "Faith," I have still always had trouble with them.

MRIs SUCK!!!! I am so claustrophobic. This last one, they gave me ativan for. I put on my big girl panties and was going to try it by myself, UNTIL they said I had to have the shield on my head... Oh heck no. I almost went into a panic attack right there, and I am not a panicky person. She told me to take the ativan THEN!! LOL

I guess we do have our paths mapped out for us. I guess bad things happen that enhance our learning experiences and, well, to some point our lives. We have to take the good with the bad, and use the bad as a growing experience.

When I am dun growing, will this be over?