I use to post on here but then disappeared

[addicted2harleys]

Hi, all-

I used to be an active member on here, but then I kind of disappeared.  Sorry about that.  Between my health and some issues with my daughter, life became tether complicated.  

Anyway, I thought I would check back in here and play some catch up.  There are several of you on this forum that I have thought about in the last several months.  I hope all are doing well or at least hanging in there.  

As for me, some things have changed.  For one, I finally got my SSDI to go through.  Wow what a battle with that!   So I now have Medicare, too.  This seems to have opened a few doors for me.  

I still don't have an MS diagnosis.  Who knows, I may not have it.  Sometimes I am positive that I do...other times I question it.  So, in the mean time, my primary doc just treats my symptoms and we will deal with anything that comes our way.  

When I left here, I was in the middle of a prolonged exacerbation.  That was pretty scary for me and I remember fearing that it just simply was never going to end.  Well, it did...but it spit me out with lasting effects.  

I am in physical therapy now.  I trust my therapist and he seems to be in tune with me and my body.  I have also decided to see a pain management doc.  I go there on Tuesday.  My pain is one of my most dibillating symptom and I really hope they can help me out.  

I also made a decision to move back to my home state.  I moved to CA three years ago to live with my mom when my health prohibited me from working.  I had been in OH and I am truly glad I am not there right now.  Lol!   I much prefer the 70 degrees I am having here!  :) So my mom and I have decided to move closer to our family (we don't have any here) in AZ.  We will be doing this in June.  The only thing I am worried about is the heat.  But, I will find ways around that, I am sure.  

I also found myself with an 8 day old puppy almost three months ago.  I have been her surrogate mom since then and have decided to train her as a service dog.  She is going through basic obedience now and is doing great!   She is a pit mix and is very smart and too too cute!

Well, I am glad I worked my way back to this forum and look forward to new friends and playing catch up with past friends....

Addi

[addicted2harleys]

Hey there...I remember you!  :)

I love Sedona.  It is where I got married.  We all had to hike down (wedding dress and all!) into a little valley because I wanted to be surrounded by the beautiful red rock.  And I wanted it at sunrise.  Not much to ask for, huh?   Poor Justice of the Peace...he was like 70 years old!   Lol

Addi

[Guitar_grrrl]

Welcome back!!  Sorry you'll be leaving CA (I'm just north of you in the S. Cruz Mts.), but I'm sure you'll like AZ just fine!  I love it there, and the cost of living is less than that of CA.  If you get toward the north end of the state, Flagstaff and Sedona actually have seasons, and they're beautiful towns!

My neuro says I have MS, the neuro at UCSF says "no".  I'm just not sure what to believe anymore!

Have fun with that doggie!  I'm sure Alex has some cool pointers for training.

[addicted2harleys]

Thanks, Lulu!  Glad to be back. :) sending you some sunshine and snow melters!  Lol

[addicted2harleys]

Morning!  :)

Red- Wow!  I don't think I remember that you got your MS diagnosis, but that doesn't mean a whole lot as I have memory issues.  I am glad that you are at least on the road to answers.  That is what I remember with you...your MRI crap going on and you screaming for answers!  I take it that the screaming worked.  Lol. Good for you!

I do remember that we had a lot of the same issues and that we seemed to be sharing the same path there for a while.  I just made a pit stop while you pushed on.  :) I am proud of you for that!

Hi Michelle!  I would like to be a snowbird, too!  Hey, I got an idea!   Since you live in OH and I will be in AZ, we would have housing covered.  Ha!  That works pretty well, if you ask me!

Alex- I seem to recall you having a service dog.  I don't remember that you trained her yourself, I don't think.  I remember seeing pics of you and her (female, right?).  I plan on having Hope certified, as well.  So, if I run across any questions in my training, can I call upon you for advice?

Hi, Beth....nice to meet you!  :)  Thanks for the info on the patch.  I have never heard of it.  I will definitely do a search on it today.  My pain has been a problem for me for I think like two years now.  Before then, my mess seemed to keep it under control and at a level that I learned to deal with.  But now the pain debilitates me.  I was on Gabapentin, but have switched to Lyrica.  I also take Baclofen and a muscle relaxer.  I have been on vicoden but that is not doing the trick either...so I am heading to pain management now.  I hope they can help me.  :)

My daughter lives near Grand Rapids.  She has sent pics and talked about the cold.  I rub it in and tell her about wearing shorts and actually sweating when I leave the house.  Lol.  But I won't do that to you.  :)

Hi, Kat!  Thanks for the welcome back.  :). I remember you.  I am glad pt is helping you.  I am glad I am going to.  It feels good when he stretches my legs out.  They are so stiff.  Good luck with your SSDI.  It was such a pain to go through and took sooo long with a lot of appeals but the end result was worth it.  And the big check I got for past payments was amazing!   Lol

I am still having issues with my daughter.  But, she is now on probation and in therapy so we are slowing climbing back up the mountain.  We will get through this.  We just have to work through the process, you know?   Thanks for asking.  :)

Hi, Sarah!!  Nice to see you again!  I do recall you being in the beginning stages of the trial.  I believe you were waiting to see if they were going to accept you.  I will go and read your journal to see how it has gone for you.  

Yes, I have come to a peaceful spot and have accepted the position I am in.  I still hope for some sort of diagnosis, but I am no longer frantic about it.  It is what it is.  So, let's take care of the pain and let pt help me where it can, you know?  Love and hugs back to you...

Hi, Shell!  Another familiar friend.  :) I thank you for your response.  Yes, I have rounded out this journey of mine, a bit.  And I am glad I found my way back here.  Thanks!

Hi, Meg. :) Yeah, I remember your name, too.  I am sorry you are having pain issues.  To me, the pain just simply makes everything that much worse.  So, I get what you are saying.  We aren't allowed to give up.  March will be here before you know it...hang in there, sista!

Thanks, everyone, for welcoming me back with such warm!  I am glad to be back!  :)

Addi

[Lulu54]

Welcome back, Addi.  I'm glad you found your way back to here.

Lulu

[meg321]

Nice to see you back, I only remember your name...but thats my memory for you.   I am always interested in pain issues, but mine is really just the headaches.

I finally gave in and take vicodin now, just once or twice a day.  I am afraid of it but it makes me feel better and I can function with it.

I wanted to go back to the pain clinic but for some reason my Dr. doesnt think it would help me.  I don't think he really understands that I have been there and have a bunch of neck problems.

Anyway, my MS doc at UCSF referred me to the Headache Clinic there but I can't get in until April.....the longer things, take the worst I feel and the tendency to give up is closer.

hugs, meg

[sllowe]

Hey Lady,

So glad you found your way back to us. Congrats on winning the battle w/SSDI!
Enjoy meeting all the new faces here and look forward to having you here. So many dealing with limboland could use your strength and advise.

You really sound like you've rounded out this journey a bit Addi, w/the docs you see - and the new move, etc.
See you around!
-Shell

[Sparkysarah]

Hi Addi

Really good to see you and it does not seem that long since you disappeared,but what a lot can happen in a short time. I am glad that some aspects of your life has taken a turn for the better and it sounds as if the move next June will be a fresh start and hopefully a positive change.

It is tough still not having a dx, but you seem to be fairly accepting that this is the way it is and keeping the pain under control is the most important thing and getting help from a physio you trust is great too.

So we shall all be glad to see your posting again when you feel like and just see how many replies you have alreadt have.. I am not sure when you left if you were following my drug trial journey.... but I am now on an oral drug trial which finishes in March when all being well I will go into the next stage of the trial. All going Ok except my cholesterol has risen unexpectedly, so have to try and find out why (it is not diet I am sure!)  I am keeping a journal of all that happens for anyone interested.

love and hugs

Sarah x :)

[torikat32]

welcome back Addi I thought about you often and I am glad your back here. I hope pt helps you and you can get back to using your legs again. I go to pt now too for weakness and it is helping. Glad that ssdi finally came through I will be starting my own battle with that soon. I hope with the move you will be able to find a great doctor that will determine what is wrong and get you back on the road to recovery. Hows thing going with your daughter? I hope to see you around here more often

Kat

[maestro1959]

Correction...IT was -10 degrees this morning.  Although, the above statement was probably true, too.   There is nothing like scampering across a snow covered parking lot in a wheelchair to drop one's body temperature quickly and significantly.

Laughing at myself,

Beth

[maestro1959]

Hello Addi.  I am relatively new to the forum, so you are new to me.  I will, nevertheless say welcome back.  I have found this to be such a good place to connect for information and fellowship.  

Pain control has been important to me, also.  I have found relief in the Duragesic patch.  It has really helped a great deal.  Have you tried anything like that?  I know there are folks who have found relief in the various procedures through pain clinics.  I am certain you will find here the answers about it that you seek.

Incidentally, I understand your refusal to return to Ohio.  I am in Michigan.  I was -10 degrees actual as I drove to church this morning, not to even mention the windchill.  Now, that is just excessive!  An invitation I received to visit Houston, Texas is looking better and better all the time.

Beth

[HVAC]

Great about the Service Dog. I trained and Certified my Dalmatian as a Service Dog.

Alex

[michelleric]

So nice to see you back Addi!  U sure have lots going on.

I think OH would be nice to get out of in these bitter, snowy winters. I think I would like to be a snowbird for sure, returning to OH when the snow is gone.

Enjoy the weather and that new little pup!
Michelle

[RedFlame]

I'm so happy to hear from you---you just don't know.  I really felt a kinship with you!

yeah as far as UCLA I'm not surprised.  That place is a nightmare.  I took a friend there once and she didn't get anything conclusive.  

As far as what is happening with me:

When you left I had been diagnosed with primary progressive ms by one doctor and that was confirmed with doctor number two.  Then, doctor number 3 said she didn't agree because my MRI didn't have enough lesions.  Sooooo ?

The one thing that everyone of every branch of medicine agrees on is that I am progressing.

You and I have allot of similarities.  I only walk from my chair to the bathroom and to my room then I have to rest.  Anything more I use my walker and am out of breath.  

I am very weak and have great difficulty with regular tasks like washing my hair etc.  I have a significant amount of neuropathy so I have to be careful not to burn or harm parts of my body that I no longer feel.  I still have some urinary problems but nothing like what other's have.  I don't drive anymore as I can't gauge distances and seem to have blind spots.  

Last summer my parotid gland swelled up badly and has never resolved.  Usually it's just the right side but sometimes both.  I have very little saliva because of it.  Recently I was referred to rheumatologist #3 for possible Sjogrens.  He did the Schirmer test which showed that I have no tears.  He did a biopsy of a minor salivary gland----that came back as inflammed but only minimally.  

He ordered a huge amount of blood tests.  He discovered that I have the gene for Behcet's disease of which I would have the neuro component.  He has ordered a couple more tests for that including one to 'medical dental' that I have on the fourth.  They will take a look at the sores I have in my mouth.  

so,  the saga continues.

At this point I don't care.  I just want the pain controlled.  I have an appt. with the neuro pain specialist in March and expect that my pain regimen will change.  

I am babbling.  I took my narcotics et al an hour ago and need to get to bedl.

So,  I will see you in the morning Addi!!

Red

[addicted2harleys]

Hiya red!  Yup, you were on I have thought of, too.  :)

Very very true.  I really was in bad shape when I disappeared.  I am walking a little now, but not much.  I can walk from like the living room to my room before it becomes time to rest.  My mom says why don't you just use your chair?   Because I want to walk what I can.  Hard to explain, but I simply am not ready to lose my legs yet.

I did go to UCLA.  That was a waste of time, imo.  They did yet another nerve test and sent me home with no followup with them.  The test came out fine is why.

I did the blood tests for the Polygrip.  But my copper and zinc levels were kinda opposite of what they should be, if that was the cause.  My primary told me that with me not using it in huge amounts in the past six months to a year, it is impossible to know if that caused my issues.  In other words, we will never know.

Yeah, the pain is ruling my life right now.  It has been for a while.  It is time for pain management.  Hopefully they can do some good for me.  

So, how are you??

Addi

[RedFlame]

Hi Addi!!!!!!

I am sooooooooooooooooo happy to hear from you!  I have thought about you so much since you left and wondered how you were doing.  I am so glad you are back and hope you will stick around!

Having your SSDI and medicare makes life easier.  I'm glad you finally have that.

Staying in Cali and then going with your family to Arizona is a good plan.  I'm from Cali and wish I had never left.  Anyway,  I suggest getting a high quality cooling vest with accessories.  Medicare will pay for that.  Even with central air you don't want to take any chances, I know what the triple digits are like there.  

I know you were in terribly bad shape when you left.  You hadn't walked in 3 months if I remember correctly and you were looking into the Poligrip situation.  The PT may be able to increase your mobility somewhat.  I hope so.  

The pain-----I hear you.  I think the treatment of the pain is the most important thing, that is what improves the quality of life.  

I'm so glad you're back Addi!

Hugs

Red

[addicted2harleys]

Ooops!  I forgot about that best answer thingy.  Lol.  I honestly don't even know how I did it.  Hmmm

[addicted2harleys]

Whoop whoop for the redheads!!  Lol. Glad to be back.  Thanks, ren!

Yup, you are one that have been on my mind. Got some catching up to do, huh?

Okay, this pain management stuff is all new to me.   I have swayed away from going because...well, you remember my allergy to needles, right?  :)

Well the pain is not something I have been living well with.  So I put on my big girl pants and finally made the appointment   To be honest, I am still afraid...but I will go.  

Infusions and blocks?  I think this is what I am fearing.  Can we maybe start a new thread on this or something?  I really do want more info...

Addi

[addicted2harleys]

Thanks, ess!  I am still trying to learn the ins and outs with my Medicare but I can see that it has been easier to get tests and such because I don't need all the referrals that I used to have.

Paula, thanks and nice to meet you!  I re-read what I wrote about moving and it was kind of confusing to myself...lol...which is probably why you misunderstood.

I was born and raised in AZ.   I moved to OH when I was 30 and stayed there for ten years.   When my health deteriorated, I moved to CA to live with my mom.   In June, we are moving back home to AZ.

There is NO WAY I would move back to snow territory.  Lol.  I don't miss it a bit.  I do miss the fall though.  That's why vacations were invented though!  :)

Addi

[figuerpa]

Addi,

Let me be the first to welcome you back. I know you weren't on here when I joined but glad to have you back.

YAY!! for you finally getting approved for SSDI it is a struggle getting through that process...I am in the process right now.

As far as leaving Cali to move back to Ohio, well I live in Ohio and if I were you I would stay there until it warms up a little bit here lol. It has been bitterly cold lately. And last summer was a killer with the heat but we just learn to deal with it and stay cool.

Pain is one of my major symptoms as well, mine is under control now after a couple does of solumedrol.

Hope you can stay around...there are many many new people here
Paula

[essdipity]

Hi, Addi--  Welcome back! I have wondered what happened to you.

Glad to hear things are pretty good and that you got your disability. Having that and Medicare means you have some predictability, which is always good.

Please keep us updated with all that's going on with you. Inquiring minds want to know!

ess