Friday, September 3, 2021

In The Next Few Months…

 


Fall is coming and just as in nature life has its own seasons as well.  I feel like I am entering a new season in my life right now.  This has been a very strange year for me.  A heart attack (times 3) has literally rocked my world and I know how fortunate I am to still be on this earth and doing as well as I am.  I also know how quickly things can change and that has made me really sit back and take stock of everything.  My children are my most important asset and they mean the world to me.  I know I am an important part of their lives as well and I want to be here for them for as long as the good Lord is willing.

 

Last spring while I was hospitalized I received top notch care.  I left on my own two feet and although still in shock that what had happened to me had really happened I felt blessed and fortunate.  I was diagnosed with an unknown heart defect that was believed to be the probable cause of what was going on with more tests to determine if that was truly the case or if there was something else needing to be addressed.  It turns out there was something else and the heart defect was no longer considered the culprit.  Just a lucky bonus item.

 

The real culprit is a rare disease called Fibromuscular Dysplagia that affects the major arteries.  It is found in about three percent of individuals with ninety percent being women.  In most cases it is mild and goes on unnoticeable and doesn't really cause any problems.  Or, it is on the more serious spectrum where there are complications which includes dissections and aneurysms, heart problems and even strokes.  Guess which end of the spectrum I'm on?

 

The great state of Idaho has wonderful physicians and specialists, but one of the biggest problems I've noticed recently is that due to the massive influx of people moving here our healthcare system is extremely overwhelmed.  Throw in a pandemic for good measure and it is downright insane and very difficult to get ongoing medical care.  Add to that a rare disorder that no one specializes in here and things really become complicated and not in the least frustrating.  I found myself passed around from provider to provider wanting to repeat tests I had already done or didn't need simply because they didn't know what to do with me or wanted someone else to handle it.  I quickly put a stop to that nonsense and made other plans.

 

I have an appointment coming up with the Mayo Clinic and I will be traveling to Rochester Minnesota soon for a proper assessment and treatment plan.  I've been told to expect to stay in Rochester for up to two weeks while they get me all sorted out.  While my insurance will handle the medical expenses I'll need to handle travel and lodging.  It is an unplanned expense, but one I feel is going to be well worth it and I am more than willing to take it on.  I feel really good about my decision to go to the Mayo Clinic.  So far my experience with them has been exceptional and I feel like I'm going to get top notch care once I arrive.  Which is no less than what I deserve.

 

I probably won't post much about this visit until long after I come back home so please be patient with me.  I will need the time to get all my tests completed and digest all of the information I receive as well as work out whatever treatment plan they come up with.  It will be a process.  In the meantime a lot of you wonderful people have reached out to me with your concern and prayers and I appreciate that so very much.  Many of you have asked about a Go Fund Me or some other way that you can help and to be quite honest, as much as I appreciate the thought, it is not something I feel I can do.  But, if you really want to help I would be honored if you just purchased something from my Etsy shop.  I'd feel like you got something for your money and I had earned it.  I hope you can understand.  But know how truly, truly grateful I am that you even care enough to want to do something for me.  It means so much more than I can tell you.  You guys are the best!

 

There is more to this story and many more things coming up, but for now I will stop as I think this post is getting rather lengthy.  It is a post I've wrestled with as far as whether or not I should even write it, but I feel like we're all friends here and friends tell each other stuff.  So here you go.  I'm so glad I have been blessed to know you all.  Please take good care of yourselves, stay well and stay healthy.  XXX

 

43 comments:

  1. Good luck and good decision. My husband went there for a second opinion about ten years ago and was very impressed with the experience. The medical specialist whole person approach plus levels of expertise and speed of working together was great for him.

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    1. That is exactly what I am hoping for. It is encouraging to hear about other's good experiences with them. Thank you.

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  2. Good for you advocating for yourself! I do and don't wish our population was big enough to have specialists for everything so you didn't have to leave home to get what you need.

    Take good care. Praying for safe travels, answers and good outcomes.

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  3. I'm sorry to hear that you're still struggling with getting your health in check and understanding how to take care of yourself with the disease you have. I think your decision to travel to the Mayo Clinic is a good one and I wish you luck.

    Tania

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  4. I'm really glad you're taking the time to go to the Mayo Clinic. I have a friend who has an incredibly rare disease & after years of no answers, the Mayo Clinic has helped them with a treatment plan.

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  5. The Mayo in Rochester is super. We live in Twin Falls, ID and my husband went back for some heart problems about 3 years back. You will have a great schedule and they run very efficiently. You will have one appt after another all day. They are awesome and it is a SUPER choice for answers. He was their for about 11 days. I will be praying for you.

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    1. Thank you for sharing this with me. It makes me even more hopeful.

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  6. Praying for you and your family.Thank you for sharing your frugal wisdom with us throughout the years,it's helped me immensely.

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    1. I love hearing this. Thank you telling me and for the prayers. :o)

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  7. You will getting amazing care at Mayo. We live within driving distance and feel incredibly fortunate to have such amazing care. Wishing you best on your health journey.

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  8. Your readers, me included, care about you and your girls very much. I'll be praying for all three of you.

    I am an idiot not to have brought this up sooner -- I have cousins in Rochester!! Could they put you up, to help with lodging, at least? They're very nice...and they have a big house. I know, if it could be worked out, that they'd do it. Please contact me privately if you want to explore this further. (I'm sorry I didn't mention it sooner.)

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  9. I am from a little town near Rochester and several family members work for the Mayo Clinic and I am so happy you can go there and get to the bottom of your problem. Jill

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    1. Me too Jill. I am eager to get there and find out what they can do for me. :o)

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  10. The Mayo Clinic is fantastic, my family has first hand experience. To say that everyone I know is facing a major life issue is an understatement. My thoughts and prayers are with you and your family each day. If you lived closer I'd stop by and do your daily swishing for you. We're rooting for you dear, Patti Ann. (Your blog has become one of my favs!)

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    1. Oh my gosh Patti Ann you are so sweet. We could just sit and visit with a cup of tea or coffee and that would be good enough for me! Thanks so much. :)

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  11. You have really been through a lot this year. I'm glad that you are going to the Mayo clinic, and I hope that you can get some answers.

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  12. Another positive vote for mayo. We go there and my husband, who is a bundle of serious issues, has great care, and doctors who respond to any questions or requests…a top notch place. Prayers heading your way, and I am off to Etsy ;)

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  13. I hope you find the help and treatment you need.
    Will be waiting to hear from you once you're back.
    Prayers for you & your family.

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  14. Thank you for sharing. Sending peace and encouragement. You'll be in great hands at the Mayo Clinic!!! What a good decision you've made to go there.

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  15. Prayers for safe travels and good care

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  16. I watched the Ken Burns Documentary on the Mayo clinic and was impressed. It does sound like that is the place to go for you. If I or my husband ever needed specialty care, I would definitely look into the Mayo Clinic.

    Take Care, don't stress and prayers up for the answers you need.

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  17. Thinking of you and lifting you and your girls in prayer.
    (You make beautiful cards - really like the monthly ones!)


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  18. I will definitely keep you in prayer!

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  19. Pray for you and your physicians. Also prayers for your family.

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  20. Will be thinking of you. I took my sister to Mayo in Rochester almost exactly a year ago. I was so impressed by the efficiency of the staff. We stayed right across the street in a place with a full kitchen so were able to cook our own meals and walk to appointments.
    One thing we didn't anticipate was the extremely thorough interview by the physician. He had access to her medical records but spent well over an hour asking her detailed questions about her history. Had we known the extent of the questioning we would have familiarized ourselves with her history better so we weren't fumbling around trying to remember dates, etc.

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    1. I've heard they are extremely thorough, which is what I want, so I've been putting together notes so I can recall that type of information. I'm so glad you found the experience impressive. Thank you for telling me.

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  21. Prayers that they are able to help you and that you have a safe trip. Will be praying. Hope you have a great Labor Day :)

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    1. Thank you Sarah. I hope you had a great holiday as well. :0)

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  22. You will never regret the time & $$ spent on YOU, your health & seeing the best doctors at Mayo. Praying they will be able to help you get your health back on track. Wishing you safe travels, & please keep us updated when you can. Have always loved reading your posts, just never commented. Hang in there - we are with you!

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Your kind comments are always appreciated. I love hearing from you.

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