I held off posting anything here until now. The realization that our efforts were flailing were hard to accept. Here is a bit about us:
I met her in this online game many years ago. She was funny and smart, and married. I didn't seek her out for a relationship but, I didn't know the depths of trouble her marriage was under. All I did was provide her a logic sounding board and friendship and she realized her marriage was changing her and not for the better. Fast forward to many years later and she has been divorced and I left my life of hell in Louisiana to join her here out in California. Before I first moved out here, I had warned her that many years of abuse had changed us both. We were both wounded birds trying to heal together and it might get a bit ugly at times. Well, we have gotten past our ugly phases, they were never serious, and are trying to enjoy some quality lifetime, or what we can gather of it, together. Enough about me and her. Please meet my love.
Shelley never was a healthy gal. When she was being born, there were complications. Her father and she have told me a few times, as she was close to being born the docs presented her young father with a dire decision. He was asked, “Which one do you want me to save?” He choose both and so they tried. Her mom was cut stem to stern to get Shelley out of there and she spent weeks in oxygen enriched environments. You see, her lungs were never quite fully formed and are the cause of her breathing issues still today.
As a young child, she broke her tibia. The boot cast they used for her was never properly setup and her foot and tibia healed back in an offset fashion. The same doctors who botched it first time suggested breaking it again to fix the issue. Her father declined. Now that one leg and foot are always twisted slightly and effect her ability to stand and walk for long periods.
Also as a young child, she was determined to be in the spectrum, albeit a higher functioning member of the spectrum. As many know, people like her, often enough, are also very bright and seek learning. She chased after this. Years of torture for not being like the rest. She still devoured her schooling. A love/hate relationship with school many of us on the spectrum have dealt with over the years.
Years passed and she went on to become a teacher in Cali. She took her life experiences and turned it around to help young, underprivileged kids improve their lives, even if by only a few hours a week. She was teaching in some very under served communities in the central CA for many years and was involved in the science boards, with other administrative duties ( such as help in selecting science text books). She loved her work despite its many frustrations because she always felt the kids deserved every chance they can get.
Well, one day that all changed for her. She suffered a cardiac event during school and was forced into retirement. She took years to get over this but, she has finally settled into a bit of online education and tutoring. She doesn't do much of it but, if you had met her when I did you would understand how valuable this has been for her psyche. You see, she never really got over those years of child torture. Despite her successes, her self-confidence is always struggling. Recent occurrences have amplified these concerns in her mind. Always wanting to resort to calling herself stupid or wrong. As a fellow member on the spectrum, I too will say things that aren't well formed. It is what we do. I try to stop the comments but, my mind just spits them out. Its not abuse here folks. its just, two harshly abused egos putting up defensive barriers. This can lead to easy misunderstandings. We work them out. Maybe with a few tears, but we really love each other. We just forget that occasionally, missteps happen and they aren't being done out of malice. We both have learned some bad habits over the years to protect ourselves. I am sure at least some of you understand this.
Well, on the the main thrust of this diary. We need help. She has been told by the Kaiser docs for too many years, nothing can be done to help some developing issues. You see, this tough older gal survived an earthquake in the Bay area in ‘89. Glossing over the horrific details from that event, this triggered a latent genetic gene in her ( and her sister also a few years after), she has Ehlers-Danlos syndrome. www.mayoclinic.org/…
She is *lucky* enough to suffer the full effect of this which was determined to be the source of her cardiac event. And now, daily, her joints are slipping out of their normal positions during normal usage. This condition is called, subluxation. In simple terms, using her shoulder during lifting can cause it to dislocate. Walking on her feet can cause her ankles to dislocate. Walking also causes...her knees and hips to dislocate. Her hands are now twisted and bent and fused due to this frequent issue occurring as a teacher. Her sister fought the Kaiser system for many years to acknowledge this genetic disorder even existed. She tirelessly fought them until they agreed, this was an actual thing and not just some hysterical woman in need of a lobotomy. Shelley and her sister are one of the prime reasons that Kaiser now acknowledges the syndrome exists. Treatment is another matter… sigh.
Here we are today. After many years of being told nothing to be done. She has gained some excess weight. She is barely capable of repeated motions much less exercise. Sure, she can do these things in very small bouts. Followed by hours of joint pain afterwards. This is assuming nothing seriously dislocates during the workout. We had been asking for low impact physical therapy for years, water therapy for example, but, again Kaiser just said she needs to exercise with no real means of how to do so.
Now, as you can imagine, she is a patient of many years of many pain meds. Dealing with the pain meds issues and everything associated with that is frustrating enough. Dealing with doctors and others just calling her fat has destroyed her self-esteem. This is especially painful when you consider she was forced into this position with no real options given. We bought an older home up in Shasta County because living near her parents in Napa was just too cost-prohibitive. They are older. They aren't likely to be around much longer. They were her rocks and she refused for us to move further away. I didn't demand such either. To be honest, our nearby options being Oregon and Idaho and Nevada…. None of which are very appealing to her/us. So we bought a home in Shasta County. It was supposed to be a turnkey home. We have already spent 50k in essential repairs that were hidden and/or glossed over by both ours and their realtor. Sure. We can fight this. First, we are fighting for her life.
You see, after all these many years of letting her decay and have no concerns for her, we were forced to take her off of Kaiser care. We could not find a local doctors up here. We are traveling 3 counties away for the nearest available doctor. I am not speaking that well of Blue Shield when I discuss this believe me but, they are seeking to do something, or so it appears. They are requesting she does bariatric surgery to prevent her body from continuing down this self-destructive course. We are scared and anxious and all manner of confused.
The anxious thought that keeps repeating in my head is this: They ignored her for years. Now they want to take pieces out of her. We are TERRIFIED! But, we are proceeding forward. We both realized, her body is doing her no favors. Hopefully, this next step will ensure we spend many more seasons together and with a higher quality of life. She has become largely tied to the house for both medical and psychological reasons. Now we have a stream of appointments to set and hopefully get this surgery done before years end. They are trying to assure us it can be handled this year. My personal experiences and hers tell us, this will not be nearly as simple as they want to make it out to be. The cost of delays means a new calendar year and a new deductible. Yet, how can we sit here and reasonably discuss with each other, that saving her life and existence needs to wait a few months because of money?
Look, I am no great writer. I am not an outstanding member of the community. I have been a member and participant in my own little ways. You soothed me on the death of my beloved Bozo. I ask you, nay, beg you, to help soothe my love’s body. The doctors are telling me the price of my love for her and I/we cannot afford all of the finances. We setup a gofundme to help with this year’s deductible. We hope it doesn't extend into next year. Covering this deductible, to us, means we can save our monies for the multiple, not covered, co-pays and visits and extra tests that their “all-inclusive” prices fail to mention. This is her life. I refuse to put a price tag on it. Help if ye can. We understand if you cannot. Life is not easy these days.
Thank you everyone for taking the time to read.
Diary update: New PayPal link with adjusted amount: www.paypal.com/…
I meant to do earlier updates but, life has kept me distracted. We have discovered for the big ticket items, the insurance company wants to drag their feet in the biggest possible way. We are no longer pushing for surgery before the year’s end. It is a fight with the docs and insurance company that will take more energy and knowledge either of us have left in us. Our immediate goals have changed to developing better behavior for us both with the goal of having her surgery in the early parts of next year, if lucky. We have also decided to use their delays to upgrade her policy quality so that we will see less out of pocket expenses across most of these treatments. Open enrollment begins soon. Let us hope the insurance market improves for us in favorable ways.
Quick review of our current status in regards to the finances for all of this: We have been putting out an extra $700-1000 each month due to fees and co-pays alone. This breaks our monthly budget. We decided to use the incoming funds for making sure all current out of pocket expenses are met without totally breaking the bank account. We have called in every possible favor. This is why we went for the gofundme. The great news is actually above. With the upgrade in her insurance soon, we will see less monthly outgoing even with the higher premium needed. It will also help us out with the post-op visits and procedures. The not so good news is we see a delay in this needed surgery. Hopefully, we can keep the delays to a minimum.
I think the most frustrating bit for us both is that all of the entities involved in this process are expressing the need for us to be patient but, persistent. Yet, when any service is happening, they want no delays in getting their funds. We hope to use this to our benefit with the change in our outlook regarding her existing policy. On that note, we saw a recent donation that just floored us both. We received the donation the day after receiving new bills in the mail totaling over 500 dollars. Talk about shock and relief! Thank you to that generous person. Thank you to anyone who has helped us with so much as a wish of better times. Empathy is not a common currency out there these days.
As for her personal progress, she is currently getting extra therapy sessions to help modify years of pattern behavior due to her issues. This is not an easy nor quick change. We WILL do this together even though I realize much of the journey is her own personal battle with her own personal demons. All I can try to do is be there and listen. Help where she asks. We have not begun all the changes to her dietary needs as that is a bigger challenge for us currently. Despite living next door to many farms, fresh foods are still not that easy to obtain nor are they inexpensive. We hope over time we can integrate new diet patterns for us both. I wont lie. Changing myself for the better is admirable but, not easy. Same for her. Both at the same time seems a huge step. It is a step we both must take for our future.
Let us also add a couple pics of her recent projects. Projects that help her retain her sanity. It is one of the few activities she is still able to (mostly) fully enjoy. She joined a needlepoint guild that is nation-wide and was asked to join the board. She has done so willingly. For anyone facing the hurdles she has to deal with, knowing you still have a purpose and use is more important than many people might realize. Needlepoint pics below: