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Other Platelet Disorders
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TOPIC: Moving

Moving 5 years 2 months ago #49275

  • DanC33
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My wife and I have decided to move out of Nevada due to the horrible medical systems here. In fact Nevada was rated one of the absolute worst states in the nation for heath care. I am now on my 6th Neurologist,3rd Rheumatologist and 2 Hematologists in 2 years! Seems like any good ologist doesn't last long here.(according to my PCP the ones that stay have been run out of every other state)

My family wants to go to OK because we have family there and the University Health Systems there are very good plus the family can pitch in with me. I'm not sure if I can deal with the humidity there. (was there last June and flared) So do people with Lupus eventually adjust to the climate their in? If not, are there ways to deal with it besides being a shut in? (I know we've mentioned some of this in other posts so sorry if this repeats a little but I would really appreciate this info)

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Moving 5 years 2 months ago #49276

  • Melinda
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Oh Dan you are my Nevada friend - I'll always think of you as that [don't know anyone else who would know where Gabbs or Tonopah or Winnemucca is]. But certainly understand. I do know someone in Reno who is in the medical field, but getting close to retirement.

As you know I can't help you with lupus related things - but I can wish you and your wife the best in whatever decision you make, and I do wish that!

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Moving 5 years 2 months ago #49278

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Dan:

I live in PA and have gone through many doctors too. I think I'm on Rheumatologist #7 in 10 years. I even went to the Lupus Center of Excellence in Pittsburgh for two years and found the care to be the same as all the others. It's funny but my very first Rheumatologist, who I loved, moved to Nevada shortly after I was diagnosed because he didn't like healthcare in PA. We have a lack of 'ologists' too. Good luck; I hope you find some one who suits you better.

As far as the weather, I don't think there are any good solutions for flares other than staying out of the sun. I do better in humidity than I do in cooler climates, so we're different there. I'd love to move to the Carolinas.
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Moving 5 years 2 months ago #49284

  • Melinda
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One reason I'd not like to move to OK is the tornadoes - having lived in MO I really don't care to live where tornadoes call home.

Thankfully I do not need a rheumatologist (yet) because I think they don't know anything (took forever for my niece to be diagnosed with RA - my stepmom I think finally has a decent one). Think I've had 4 endocrinologists and have a real good one now - 3rd hematologist (not counting the 2 I had overseas, the one in Hong Kong who was UK trained was a ditz) and that's only because my #2 fantastic hematologist died. Have to think of my other "-ists" but need to get dinner going.

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Moving 5 years 2 months ago #49287

  • DanC33
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Melinda, My wife is from Ks and I lived in Ar. for years so tornados aren't a worry, at least if there's a shelter. Here as you probably know, we have earthquakes, dust storms, flash floods and wildfires. So I guess it's pick your poison.

Sandi, I was just in PA last week, it's GREEN!!! Our tour bus broke down in Lamar(?). I did get to spend a few days in Ohio as well and felt really good. Temps were in the mid 70's and humidity was 40%. But I've now been in a flare since we got home...temps 100+ with 40-50% humidity and BLAZING sun. Everytime I go out it feels like a 1000's of needles sticking me.

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Moving 5 years 2 months ago #49288

  • Aoi
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I chose WA for the cloudy, murky weather, which was my way of minimizing sunlight exposure. I'm moving to a nicer part of the state soon, though unfortunately the area is currently experiencing unusually warm and very sunny weather.

I've had a lot of crappy docs, so I'm more focused on enjoying my life. I've had great experiences in PA and WI, though prefer to avoid tornadoes and blizzards.
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Moving 5 years 2 months ago #49290

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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We have both tornadoes and blizzards. We had a tornado rip through our neighborhood four years ago. It totally destroyed quite a few houses in our plan. My son saw it on the street behind our house and yelled for us to get downstairs. Trees down everywhere. Two years before that, we had one that tore our shed to pieces. PA isn't known for tornadoes, but it has been a concern the past few years. We've also had our fair share of blizzards.

Any cold, damp weather makes me feel horrible. I also get the pins and needles in the sun, so there is no way to win.

Too bad I missed you in PA, Dan. Where were you?

Aoi - where in PA were you?

I think my problem with doctors is that no matter what, they just can't stop the progressions. No matter what, they can't fix anything. It doesn't matter who you see. All I really care about is if they are willing to try my ideas once in a while. I try theirs and never get anywhere. It's been 10 years and I'm tired of the fight.

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Moving 5 years 2 months ago #49291

  • Melinda
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We have tornadoes sometimes (but really more east of my area), blizzards (not bad as long as you aren't stuck out in one as I was in the late 90s), wildfires, floods, and have even felt a few earthquakes. No place is perfect - but I think it's close to perfect here because we don't have the humidity I grew up with in MO. So both you & your wife have lived in tornado country and know what you are in for. My friend in OK City has a shelter in their garage, said no basements there - they love it there, and so did my friend from Chicago who lived there for a number of years.

You do what you have to do and that's that! So keep us posted Dan.

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Moving 5 years 2 months ago #49294

  • alisonp
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Dan, you need to move to NW England - this summer has been so cold that I've only just put my winter clothes away

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Moving 5 years 2 months ago #49319

  • Aoi
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@Sandi, I've been in the Pgh. area many times visiting people there. I've also been in eastern PA, and even Punxsutawney. I even got stuck in Pgh. one year due to a blizzard. But the only tornado I ever saw was in Madison, WI.

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Moving 5 years 2 months ago #49321

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm about 45 minutes from Pittsburgh. Haven't ever made it to Punxsutawney although my husband and I used to want to go there on Ground Hog Day.

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Moving 5 years 2 months ago #49380

  • DanC33
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Alisonp, We did actually consider that area and toured part of it(Western and Upstate NY, Ct, PA, Ohio even Toronto). It's a beautiful area but I think the freezing sub zero winters would do me in thanks to Reynaud's.

Aoi, never been to WA. so I don't know much about it. I may be going there in the fall for a river boat cruise on the Colombia/Snake River so I will check a little deeper into it.

Sandi, I had no idea that the weather in PA was that severe! (too bad I didn't know my tour bus was going that close to your location, would have liked to have met you)

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Moving 5 years 2 months ago #49385

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yes, it can be severe here. Not often though. I think our last two blizzards were in 1993 and 1994. We've had some pretty nasty ice storms at times, and of course, the tornadoes. Oddly, one tornado was on December 1 seven years ago and the other one was at the end of May four years ago.

If you ever take another trip here, let me know! Good luck with your move.

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Moving 5 years 2 months ago #49393

  • Melinda
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Dan we did a Columbia/Snake River cruise a few years back - we really did enjoy it! Small boat, not many people, great food, beautiful county! Hope you go.

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Moving 5 years 2 months ago #49408

  • DanC33
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Went to my Rheumatologist yesterday and he thinks going to OK is crazy because the very high humidity there but he's from TX. so I think there may be a little of that OK. vs. TX. rivalry. He did agree I need to be somewhere other than the middle of the burning dry desert with it's blazing sun. He also officially DX Sjogren's syndrome after I failed the tests for that. (like we didn't know that was coming)

Sandi, my Rheumy has recommended a couple of times of going to Ohio because of the Cleveland clinic if I can tolerate the winter there. I do have friends that live in Shaker Heights and they love it but Cleveland is too big of a city for my wife...she hates big cities. We are planning to visit again tough next March/April...

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Moving 5 years 2 months ago #49411

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I think the east is tough as far as Lupus goes. It sure isn't easy on me! I wouldn't recommend it.
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Moving 5 years 2 months ago #49417

  • Melinda
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Dan why don't you visit there in the winter and then you will know if you could tolerate it. I know someone told me I was crazy, MO was not humid - asked when they visited and they said April - well of course it isn't very humid in April. So really it would be better to check a location out during the time of year that isn't the best.

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Moving 5 years 2 months ago #49811

  • DanC33
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Well we decided to put off moving till we can figure out exactly where we want to go. Based mostly on the info here...THANKS!!

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Moving 5 years 2 months ago #49817

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Dan! Don't base your life on what we say! Now I feel bad. :(

I have problems when it's cold or raining. I think I'd do better in the south, like San Diego where the weather is pretty consistent. It's usually in the mid-70's there. But, you might do better out of the heat and sun which you've said causes you problems. I get dizzy and nauseous in the heat but I can take that better than the joint, muscle and fatigue problems that I get in the damp/cold weather. Also with the heat, I can get into air conditioning and feel better. When it's damp or cold outside, I can't escape it. It affects me even when I stay in the house.

It's a hard decision. It stinks when you have to base your entire life on the weather. My days are planned around it too and I hate it.

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Moving 5 years 2 months ago #49818

  • Melinda
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I'm with Sandi - don't make decisions based on our opinions!

Personally since you are not happy with the medical care you are receiving where you live I'd go to a city that has a really good university medical system. Emory in Atlanta I'd look into - also St. Louis - Houston.

But like I said above: You do what you have to do and that's that! You know yourself and your family best - that's all that matters.

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Moving 5 years 2 months ago #49826

  • Aoi
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Dan: I have to agree with Sandi Melinda. Find a place you like based on the criteria that are important to you. Sandi says she might like San Diego (and note the fun alliteration there), but I lived there years ago and didn't like it at all. In the same vein, I can say great things about NYC based on the care my mother is receiving there for her cancer but would never want to live there myself. I hope you can find a place that satisfies your needs.

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Moving 5 years 2 months ago #49841

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well, my daughter lives in San Diego. :) She loves it and although the lifestyle might not suit me, the weather probably would!

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Moving 5 years 2 months ago #49844

  • DanC33
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Well only some of it came from here(it was just the icing on the cake)...so don't feel bad!! You just reinforced what I already kind of know about living back east and Lupus so you really helped. The rest came from not just my Rheumy but from 2 of my other doctors(my PCP and my Pulmonologist). In fact my PCP said to draw a line down the center of the map, and choose anywhere on the western half. My Pulmonologist says that because of the lung damage that I've sustained due to PCP pneumonia he said that the humidity would likely do irreparable harm. So the search continues.....

Sorry I didn't clarify further...I was kind of cranky after dealing with the news.

BTW...Been to San Diego several times, great weather!

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Moving 5 years 2 months ago #49847

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well, good luck with the decision. You should just throw darts at a map or pin the tail on the donkey. I wouldn't know how to go about making that choice!

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Moving 5 years 2 months ago #49848

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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PS. The cold weather does me in as far as lungs go. Every winter I get a good case of bronchitis or pneumonia. It usually takes 3 months to get over it. I have lung damage too and winters are brutal.

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Moving 5 years 2 months ago #49858

  • Melinda
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I just wonder if the medical is bad because of the small town - I'm not sure Reno or Vegas has bad medical.

San Diego is a big town and your wife though doesn't like that. I like big towns, but do prefer the "smaller" suburb. Although I must admit when we lived in Tokyo it was so much fun being in the middle of things and walking here and there and going on the trains and subways and riding my bike to the hospital to see my hematologist (never even entered my mind not to ride my bike like it does so many ITPers these days not to do this or that).

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Moving 5 years 1 month ago #50181

  • DanC33
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Sorry I haven't been on in a while... Melinda, the problem here is not so much the where you live in Nevada, it's that good doctors don't stay here very long or they just drop your insurance out of the blue. So because of this you end up constantly searching for new ones. I will say that all my current doctors say that they aren't going anywhere and they would never drop me even if I had no insurance or money but I've heard this before.

Sandi, I'm not allowed to play with sharp things like darts!! ha...ha!! Probably not a bad idea as my wife is still pretty firm on wanting to move.

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Moving 5 years 1 month ago #50184

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I hope you guys figure it out soon. I'm sure it's a stressful situation, but if I got to choose where I lived, I'd have a good time with that! No doubt, NC.
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Moving 5 years 1 month ago #50225

  • Melinda
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Getting insurance dropped by a doctor you know & trust is the pits - and can happen any where.

Does your wife know where she might want to go? Know you had mentioned she didn't like big cities [even though I like the suburbs, the most fun I ever had was living in the middle of things in Tokyo, but of course they have great public transportation] - is she for living outside a big city but closer than you are now to Reno?

You do what you have to do - period!

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Moving 5 years 1 month ago #50387

  • DanC33
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Melinda, My wife isn't sure where exactly she wants to go as long as it's not a city...I think most of her issue is that our lives are so upside down right now. Our son just graduated high school and is going off to college, our daughter does the same next year, I'm being put on Medicare in November with all it's related costs(being taken off Medicaid), the constant doctor issues that I've mentioned, not including my stuff but my brother just found out that he's got bone cancer and was given less than 5 years, his wife has asked us to move to help with him. So you can see why this is such an unsure time....(sorry if I unloaded a bit)

Sandi, NC would be great...beaches to mountains, towns of every size and a low cost of living too.

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