1-24-25

With just 8 days until I am flown to my new place residence, we are all feeling the excitement and nerves. The choice was made to fly me out rather than me riding in a car for 3 days. An expense we had not considered until reality reminded us that my body is too weak for such a trip. I know it is the right thing to do and can't help but feel a little sad about it. Our deposits and fees have been paid and we are feeling the strain and stress.

Once I arrive I will need to obtain the essentials. A bed, a chair, and other items such as groceries etc. I've found a decent set up for a twin size mattress and frame and looks like I can get it all for under $500. With my allergies, chronic pains, and wonky body temperature, I have to choose a hypoallergenic, cooling mattress. Things that can wait and be looked for that are gently used such as dining table, couch and so on can wait for now.

Other items that would be a huge help are gift cards to stores for groceries and essential needs. Target, Walmart, Publix and so on. Since this move is emergent, I have to leave furniture behind. There is no room in the uhaul, plus, my husband will have to stay behind to sell our home. Hope that made sense. Am having a slow brain day. Thank you all for everything! Ha ing an actual address to go to is a huge weight off our shoulders

1-7-25

Desperation is here. Multiple nodules, cyst mixed all throughout neck and around thyroid. Two are listed as a concern. Follow ups on 1-8-25 to create a plan.

Both my primary care and therapist are telling me to get out of this town as quickly as possible.

My labs are all over the place for the past year. It is clear there is something very wrong happening in my body. Autoimmune diagnosis that I thought would give answers are only pointing to something larger. Anyone that lives in my area knows that unless it is a simple cold or sports injury, you are screwed.

I had received a potassium infusion the Sunday before Christmas. A recent ER visit shows that I am still extremely deficient. Where I live they are denying me fluids, nutrition and potassium. I had to go to a neighboring town 2 hours away for the potassium. The infusion took just over 3 hours (sitting) and another 2 hour drive home. This breaks havoc on my body. To add insult to injury, my ER visit I received no help, just blood draw. I desperately needed at the very least fluids. Instead I was quite literally yelled at, I have a portion of this on video. I have lost 21 pounds in a month and still, no help.

What I must do now is do what my doctors are telling me and move ASAP. No longer able to do many things on my own. As of my last dox appts last weak I have learned that I must use a walker. I faint without warning now. My extremities give out without warning as well.

Am too tired to continue giving details. If you have questions please feel free to ask.

We had planned on selling our home this spring. After my condition began worsening at a higher speed, it became clear my body will not make it that far. Now we are in a position that, no matter the outcome, I must leave NOW. My daughter is willing to move with me, we will get to where we are headed (East, to amazing specialists). None of us are financially stable until we sell our home. If you are able to assist, I appreciate it more than I could ever express. Please do NOT put yourself in a bind to assist us. I just cannot live with that. We will figure it out, wing and a prayer. We are headed out blindly and hoping for the best. If we can produce the funds, we leave January 31st. The uhaul, hotel stays, food, and finding a place to rent. I believe in us! And am also terrified. Hoping I make it in time to receive the treatment I need to continue my earthbound journey.

TYIA. Please take care of you and yours first!!!

5-3-2024

I'm finally out of hibernation! During winter I all but shut down completely. Spring has it's own challenges due to allergies, and it is a step towards being able to function again.

Coming up I have an put of town appt with a rheumo about 3 hours away. The hope is to get appropriate care regarding my POTS, EDS AND MCAS. The MCAS and POTS needing the most attention currently. Also due for a weeks worth of halter monitor (locally). Still searching for an endochronologist. This appt may either be in Danta Fe or Albuquerque (perhaps Denver). This appt is the absolute most important for further care.

We have made a plan to move to yhe East coast with a year. Until then, we will be working on selling all of our belongings to be able to make the move. I have found doctors specializing in autoimmune care there. This means I am at least a year and a half from appropriate care.

Until we are avle to make the move, I will be doing my best to survive. Thanks to my mental care team where we currently reside, I am confident I can make it through.

I continue to hold firm on my personal boundaries, ensuring I am safe and feel safe. I am extremely exhausted and am very much looking forward to a more reliable pool of doctors.

If you have any questions, please do not hesitate to ask! I struggle to explain everything that is happening and am much better at answering questions! I truly appreciate all of your support, reminders, donations, traveling with me to appts, filling my meds containers for me each week, helping me clean the house, spending time with me and loving me through this confusing time!!! I love you all and truly could not have made it tbis far without you!!!!

As of today I have raised enough funds to make it to my follow-up neurology appt in Phoenix, mid October. Next up is to find the surgeon I need to repair my prolapses which will be out of state since we do not have one, the surgeon or the Urogynecologist, also pay on medical bills and save for next appts needes. This includes endochronologist (none in my area), and CSF specialist. And finally funds to help us move closer to these specialists I will need for the remainder of my life.

I am also looking for a place to set up all of my belongings I am selling to fund my needs. Thank you all so very much!!!

Short version; I need surgeries that are far away in distance. My illnesses are not curable. My quality of life depends on being closer to specialists. I hope to be able to obtain full disability, and am on partial disabilty currently. Selling everything I own. I want to live.

Full version; My name is Jeannie. I am wife of 27 years, partner of 29 years and Mother of 4 incredible humans. Since the age of 12 I have felt not quite right. At the age of 14 I began fainting spells. With one appointment to get an emg at 16 years of age after my Mother witnessed me faint. No results led me on my long, fatigue'ful life. Always knowing something wasn't right, and always feeling like it was just aging and 'normal'..and everyone had their own version of not feeling okay to a certain extent. Trying to explain symptoms to doctors the best I could and not getting anywhere. Through the years I continued to faint, feel dizzy, have blurry vision and constant fatigue.

Those that know me, know that I am loving, caring, honest, sometimes brutally so, love people, want to help even if it means putting my needs aside. They also know me as a straight shooter, silly, fun, goofball in the room and always down to dance!! I have learned that growing up as a single child with my symptoms list ever growing, I learned to make light of everything. Turns out being silly and destracting from the hard things was my way of coping. It has continued to be my way of handling life and it's challenges. Along with this trait, I have always been forgetful, this has become a pretty serious issue almost overnight. I get lost at times (yes even locally), disoriented, extremely forgetful and it can be quite embarrassing. It is called brain fog I have learned. While I believe I have always had this, it has only become more obvious over the past few years, to where now it is and can be a pretty big problem in my day to day life.

Through 3 births, 4 children (twins), and raising them, I pushed through. Sought therapy and psychiatric care. Though needed for past traumas at first, it became my place of figuring out what else was happening with me. After a car accident in 2001 I began my journey with doctors. Very soon finding out it was not just the car accident and recalling the lifetime of pain and fatigue. Pouring all of my energy into raising the children, worrying about other ailing family members and helping so many others, I realized I had not truly been paying attention to my own body.

Flash forward through the years of seeking an appropriate medical diagnosis, I encountered many awful interactions with doctors. Not realizing at the time that this was not appropriate medical care, I continued on. Some time in 2006'ish, I was diagnosed with Fibromyalgia. At the time this curbed my seeking further info and sort of gave me a tiny answer.

Little by little I was still falling apart physically. Still fainting, still fatigue and so on. GI issues creeping up, migraines sneaking in. Multiple surgeries, injections, PT, xrays, scans etc. Even paralyzed (fully aware and unable to speak or move) for small increments, rashes, hives and the list goes on. After diagnosis with osteoperosis and arthritis and multiple surgeries, that Fibromyalgia diagnosis no longer made any sense whatsoever. This is when I began to slowly learn that I would have to do my own research and learn to advocate my ass off. I also joined multiple support groups online to learn from others.

It began to dawn on me that my Mother, Aunt and Grandmother all had been some kind of 'sick'. Their diagnosis escaped me, I remember very little besides the fact of my grandmother having fainting and fatigue, Mother diagnosed Fibromyalgia and Aunt was always sick. Since they had all passed I had no one to ask. My research continued. A chance encounter with my new GI had sent me to a Neurologist in Phoenix. Having already seen every doctor in the Four Corners and being literally laughed at and told to get more therapy to learn to live with my symptoms, I was very hesitant and quite frankly feeling hopeless and helpless. Even the Mayo clinic was not a great experience. Mayo diagnosed me with rectocele, the end. This neurologist in Phoenix doctor changed my life (my new GI doc told me about him). Now diagnosed with POTS, EDS, mast cell activation syndrome, mixed connective tissue disease, and tmj on top of my previous osteoperosis, arthritis, spondylitis, anxiety, depression, panic disorder and PTSD. Also recently diagnosed cystocele, enterocele along with my diagnosed rectocele and severe hemorrhoids. Finally, finally I have diagnosis. Finally I have a direction.

So what now? I had finally also seen an allergist after 7 years of referrals. I have 2 sun allergies, animal and foliage allergies. On my own have learned I am allergic and intolerant to many foods as well. Thankfully only 2 anafaletic shock so far (almomds and avacado). My body continues to change it's mind on what I can tolerate. It is a juggling act to say the least. Eating is very difficult. I still need to see a few other specialists, all of which are nowhere near this small town we live in. Either Albuquerque, Denver or Phoenix are my closest options. I have referrals currently to Albuquerque and Denver for a much needed repair of my prolapses, this has to be first on my list as it is the most pressing currently.

What do I need help with exactly? 1. Funds to get to a surgeon for prolapse repair 2. Funds to rent a van or rv to get me home safely after this envasive surgery 3. It was in February I paid out of pocket $2600 for the neurologist in Phoenix, the follow up is $1000 4. I owe just over $3000 in medical bills. I currently have partial disability (for mental) and another private insurance that does not cover much and deductable is unrealistic 5. In order for me to live with these conditions that are not curable, we must move.

I do not yet know where to. Just know that I need appropriate medical care and we have nothing of the sort near our current location. Closer to sea level, near specialists and a manageable space to reside.

When taking the trips to doctors I have to have someone accompany me. I have not been able to work since 2014. I left a job that meant the world to me because my body eventually could not take it anymore. My husband is the soul breadwinner and works his tail off to provide and does his best to assist with my needs. Unfortunatley, it just isn't enough and this breaks my heart and makes me feel such heavy guilt and sadness. The best I can do is continue to listen to my body and experiment with what works best for me to survive in the best way I can.

My regimen and routines are strict and ever changing. I will continue to learn all I can to help myself and appreciate anyone able to assist. My deepest understanding if you are not able to help or even if you don't quite get this. It is a lot. Thank you for your time! I am willing to answer questions. Please know that sometimes I can not answer right away. My body and brain shut down a lot. Much love

(Slight recap and additions) Newly diagnosed and having been living with since age 12-14.

POTS, EDS, Mast Cell Activation Syndrome, TMJ, Mixed connective tissue disease. Need surgery for rectocele, cystocele, enterocele and hemi's...out of state and will need to rent a van or rv for safe travel back home. Osteoporosis, arthrtis, widespread tendinitis and bursitis, tinnitus, headaches, migraines, nausea, fatigue, brain fog, fainting and blacking out, vertigo, many falls, incontinence. Had C-spine fusion, need t-spine fusion at some point (3-4 discs out and very painful). 3 foot surgeries, goider in throat removal, ganglion cyst attached to nerve and vein removal, facetectomy lumbar.

Need to sell belongings and figure out how and where to move for further healthcare. I have been trying to sell things online and it is proving to be a very slow and painful process. I am selling all of my belongings that are not necessary to further my care.