Quick update on whats going on with me

[tyler911]

Hi Everyone

Just thought I would do a quick update with whats being going on with me

well first I lost my job really ***** as i also lost my health Insurance
MS specialist (the second one) has given me the MS diagnosis back (He can keep it for free)
I also have the Neuro sarcoidosis am still on the prednisone
they also found a new mass and nodules in my lungs, which i can go no further with due to no medical insurance
oh and last they took my Driving license away, my vision problems were getting way out of control
other than all that I am doing good, or at least as well as can be expected

I do not come on the site too much these days, due to vision problems, and i spend to much time correcting my spelling mistakes lol

Hoping hubby will l take me to Sedona tomorrow, as he has the day off work, and i will not freak too much on the sharp mountain roads lol, well i did say my vision was bad lol lol
so just thought i would let you all know everything is quite good with me

Tyler

[tyler911]

Hi Folks

Well I finally got to Sedona today, we took our three dogs with us, we had a blast,

I so love Sedona, I would move there in a heartbeat lol

Did quite a bit of walking (lol should say hubby and the dogs did) i just caught up in my own time, was gonna go for broke and do a horse ride too, but gees i can barely stand on my feet lol, so gave that a miss and took the jeep tour instead,

The dogs were not thrilled by the jeep tour, they would have preferred to take off to where they wanted to go, but i was in jeep heaven lol

After the jeep ride i had to double check none of my old bones were broken lol, I tell you some of these people do not know what the brake pedal is for, then we went off just window shopping, could not shop for too long with the dogs in tow

It was a really long and tiring day, but as i had bugged hubby about going for ages, i had the sense not to complain about being worn out, ha ha

finally it was evening, dropped doggies off at friends house,so they could eat and we took  off to go have dinner, went back and picked up the pooches before coming back to the valley,

I had to laugh when we got home i never noticed the dogs were all red, with the dust, my poor white dog CB,  hates a bath and knew what was coming, she promptly jumped on the bed and started digging under the comforter, saying you cannot bath me if you cannot see me lol

so all in all a really good day, I am probably going to pay for all the excitement tomorrow, but heck it was worth it,

Anyway that's my update, i am off to bed now, as it is 4:35 in morning, yes we have not long gotten home, ha ha, i made hubby stop at every rest room or gas station that i spied, it broke the journey down and i could go use the little girls room, (poor man what he has to put up with lol)

Tyler

[gooddays]

You may be entitled to COBRA, it is a type of insurance that may cover you for the next 18 months.  The only downfall is that you pay the full premium, your former employer will not cover anything.

Call your personnel office (if you can afford to pay the premium) and see if you can enroll in it.  It better than having no insurance at all.

When our office closed operations, we where all offered this type of insurance and  they billed us after the 18 months period. They even provided us with a payment plan.

You have nothing to loose by checking this out and maybe you can get the treatment you need for your lungs and evey other issue  you have.

Good luck!!!!!


Gooddays (Zulma)

[addicted2harleys]

Hi, Tyler-

I lived in the Mesa - Tempe - Chandler area while growing up.  I went to Dobson High (Go, Mustangs! lol).  My mom graduated from Scottsdale High.  My grandpa was the sheriff of Maricopa County for many years before retiring.  

As an adult I lived in Chandler and Gilbert.  2 of my kids still live in AZ now....they are 25 and 20.  My youngest just bought a house in AJ.

I definitely don't miss the heat there, but I still miss my home turf, you know?  I miss the lakes and the mountains.  

I hope you make it up to Sedona...get you out of the heat for the day.  The red rock is pretty spectacular.  I ended up taking the piece of the rock I got married on so I guess I always have a piece of Sedona with me.  ;0)

Your outlook on life is very similar to mine.

Addi - in limbo land too

[Zacksmomi]

So glad you checked in.  I was thinking about you.  I am crushed to read what is going on, but sooo thrilled about what a strong positive attitude you have.  

You are right, what can getting down about it do for you.  That is how I feel.  The day my Dr told me I have MS all the girls in the office expected me to be crying and dragging myself out of the office.  I don't know what good that would do.

I pray you get to go on your trip.  Maybe a nice dinner out tonight...Or moving to Canada?? lol!

Lots of hugs to you
D

[Guitar_grrrl]

Whoa, that's a lot to deal with!  Big hugs, and best of luck.  Always good to see you here!

[tyler911]

Hi Alex

Yes I am staying positive, i believe in where one door closes another door opens
I just wish that door would meet me head on lol

Tyler

Addi

Wow small world, I adore Sedona, and Sunrise is so pretty too, where in the East Valley are you from ?

I never got to Sedona today, but perhaps tomorrow, I just to see the red rocks again, and hopefully i will not be too tired to enjoy it, I really do love it up there,

Lol I am getting so used to the C.R.A.P going on, that i tend to think now, whatever, and just suck it up and say we will see what tomorrow brings, it is another new day

I am gonna  keep smiling, and not let all this get to me, well for now anyway lol

Tyler

[tyler911]

Hi Julie

No as yet I haven't looked into any clinical trials as yet, they all seem to be out of state,

yeah was kind of a bummer getting the MS diagnosis back, the last MS specialist took it away as they said it was Neuro Sarc, well I know for sure I have that, and I am still doubting the MS  part, lol ( like i said he can keep that DX for free lol) I had to pay my co pay to be told again ha ha, '

Did not make it to Sedona today darn it all anyways, we  were making up the food basket and hubby got a phone call, and had to go do a job, so out went our trip, oh well perhaps tomorrow,

Apache Junction in about 60 Miles east of Phoenix, which is really not too far I was used to driving to Scottsdale every day for work,

right now I am really ok with whats going on, I have to be, and keep a good face on too as i do not want my hubby to get down about all this, he has enough on his plate, worrying about me lol

Tyler

[tyler911]

Hi Sarah

I am actually feeling OK right now, I cannot allow myself to get depressed or down as I know that is going to bring my symptoms back with a vengeance,

I am going through a discrimination case right now with my former employer, as I was let go due to my illness, and the EEOC and ADA are saying I have a good case against them, so I am sitting back and waiting right now,

The time off right now is probably going me a lot of good, as i know I was not getting enough rest,

Yes losing my independence is the biggest bug bear right now, but i am slowly getting used to it, Hubby has been a treasure, and takes me where I need to go,

I have been on Prednisone 3 months now, will be on the same dosage at least another two months, then i will taper down and see how that goes, right now I am still on 60MG a day, it seems to be helping, but the weight gain and the moon face i hate with a passion lol

The mass and nodules in my lungs is pretty miserable, as they wanted to biopsy them to see what was going on there, and to rule out cancer, but i am gonna have to wait on that, as the day it was due to done I lost my job, but i am not gonna sweat over it just yet,

Thanks for you support
Tyler

[addicted2harleys]

I am sorry that life is dealing you a sour hand right now.  Hopefully things will turn around soon and you can get the medical care you clearly need.

As far as Sedona...I hope you get to go!  Sedona is so absolutely gorgeous, which I am sure you already know.  I miss AZ sometimes....born and raised in the East Valley.  

I got married at sunrise in the red mountains of Sedona.  We had to hike in to get to the spot that I wanted.  It was spectacular.  When I was a little girl I used to spend many a summer there with my grandpa, who taught me how to fish.  ;0)

Thank you for reminding me of Sedona.  Gosh, I need to get there again....

Addi

[HVAC]

Good to here from you! I am glad you are still positive even with all you have on your plate.

Alex

[Sarahsmom46]

Sarcoidosis and MS.  Tyler that is a fulll plate for sure.  I see you are in Arizona.  Have you looked into a clinical trial that you could get into?  It would be one option to getting around the lack of insurance challenge.   I am not sure how far Apache Junction is from Pheonix (Mayo Clinic), but it might be worth conisidering.

I wish I could help.  It causes me a lot of pain in my heart to hear people losing their jobs along with their health insurance. That's a double whammy.  Like Sarah said, if you need to put your frustration in words, by all means do so.  We will all try to put our heads together to see if you have other options available.   There are many smart people here as you probably already know.

About your vision problems.  I have been legally blind since birth and have mastered the maze, so to speak.  If you need any suggestions about how to do things, just let me know.  

I hope you guys make it to Sedona today.  I hear it is so beautiful.  My daughter lives in Tuscon and she keeps going on about Sedona and promises to take me there when I come to visit.  

Remember that the nature of this forum is to help, commiserate (if necessary), laugh and even try to problem-solve and you certainly are an important part of all this.  

Take good care of yourself and please don't be a stranger.  

Julie (Sarahsmom)

[Sparkysarah]

Hi Tyler

It sounds to me as if you are being very brave and coping extremely well under the circumstances. I am wondering how you are really feeling having lost your job, health insurance, driving licence,..and loss of independence.

It also does not sound good about the new mass and nodules in your lungs and your deteriorating vision, My mum had sarcoidosis many years ago and it is a very debiliating condition. How long will you be on the prednisone and do you fel like it is helping?

If you ever feel like having a rant...then you know where to come as I think you have a lot to deal with at the moment.  You are a very strong woman and never forget it.

Sending you love and support

Sarah xxxx  :)

PS Don't worry if you only come on the forum now and then..it is always good to hear form you