It’s a little quiet here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome but for good reasons.
Over the past few months with the holidays (and recovery from my seasonal depression), the house-search, and all my medical appointments my spoons are lacking a great deal. So goes chronic life. I am dealing. Still, it makes me sad I can never really say I feel good anymore because I often feel significantly awful on more days than not.
I keep my thoughts light and my interactions brief because I just don’t have the energy for anything more. I forget how to communicate with healthy people since it is now it is a infrequent role to play. I also struggle to reach out (or reach back) because I just don’t know what to say. I do know not everybody enjoys my passion for genetic disorders, my belief in gluten-free, non-GMO organic, mostly vegan diet nor my theories on time, space or the in between. I never want to bore people but sometimes I can’t see through my passions to the annoying behavior I take on when I discuss these things with friends or family members. No one ever really understands my special interests and I don’t expect them to. I just want others to know I wish I could be more normal but all my defenses are stripped and “being normal” isn’t really within my abilities at this time.
Anyhow, I wanted to take a moment to write candidly about my latest chronic illness journey news and share our experiences finding our family a home with disability access and proper accommodations for our blended family structure.
Finding a home proved itself as no easy task with all things considered. After countless months of intensive searching, letdowns, and learning about the VA mortgage process I think we’ve finally found something to meet all of our needs and requirements. When I last wrote about our search we were bidding on a completely different home. In a fortunate course of events, we found out the home was appraised for much less than the sellers were asking and the realtor was pulling some shifty tricks. We were able to revoke the contract due to the home’s appraised being significantly less. Fortunately, the Veteran’s association is looking out for possible issues unsafe for the veteran with this check and balance in the whole process of VA loans.
Finally, we found a reasonable deal! If all goes according to plan we will close on on the house mid-February.
The house is “the one” for many reasons.
We needed a home big enough to accommodate our large family, allowing everyone privacy and sufficient living space on one level with wheelchair access considered throughout the home. Finding a one-level home with at least 5 bedrooms, 3 baths, and 2 living areas, a fenced yard with a small amount of property for a garden took months of intensive searching.
I found a realtor who listened to our requests to facilitate the best possible deal for us. So far, it’s a wonderful experience with the new realtor with her handling all the arrangements for us to see houses across many miles throughout the Buckeye state. The house we found is far from her service area but through synchronicities, it all worked out! Thanks, Universe!
Interestingly enough, the homeowners remodeled the house for accessibility because two of their children living there at one time required wheelchairs. It was also modified to have an “additional living suite” with a second kitchen and laundry. Perfect for us! My MIL moved in with is in in the Fall of 2015. Although we get along good for our tight quarters, we all want to have the luxury of our own living space so we are not tripping (or rolling) over one another. My ma-in-law is our Veteran and because one of the owners is also a Veteran she will be connected with some great resources in the community to enrich her life. Also, the realtor that showed the property is a veteran and refused to take payment from our realtor (also a Veteran) because she believes in things that are “meant to be.”
After we went into contract, the house was inspected and there were several big issues of concern found. At first, our hearts burst because it seemed the deal was going to flop.
Since the sellers went above and beyond to repair all items noted in the inspection report, payed the first year of our home warranty, and $1000 in escrow for cosmetic repairs, everything is still a go. We just got the word the VA appraiser’s report is good and no repairs are indicated. It is just a matter of time now.
We are fervently ready for this next chapter of life. I am already researching the area, the people in the area and the medical resources available in my usual intensive nature. My ma-in-law and kids are planning gardens and decorating. Hubs is investigating the local music scene and is just happy everyone is happy.
In earnest disclosure, I’m a slightly frightened about all the work to do before we move. I can barely clean my room, using my wheelchair, without my heart rate skyrocketing and my oxygen plummeting let alone pack a house. I employ a visualization technique to deal with things like this or when I get overly anxious with the threat meltdown mode looming. It helps, not 100% but enough to keep at it as much as I can.
I imagine every little intrusive, worrisome and/or frightening thought is stored inside grand ammount of helium balloons with a string tied to each one.
Whenever things feel overwhelming, I imagine taking all my worry balloons into my hand by the strings then using the biggest pair of scissors I can imagine to cut the strings in one strong chop. I visualize the balloons flying off into the sky, eventually, out of site while I breathe deeply. Sooner than later I find myself grounded in reality once again and able to continue fighting the good fight. This technique is always my go-to method for dealing with the torrid of thoughts, memories, and emotions around every corner of my existence.
Chronic illness life with Ehlers-Danlos Syndrome, POTS, and all these other diagnoses ensures at any given time my system will fire off inappropriate amounts of adrenaline in response to things not normally requiring such a flustered response. Even when I am positively excited, I am too excited and I will tremble and talk rapidly on the topic until I collapse in on myself in an exhausted, existential heap. I must giggle a bit when I think of myself this way because it reminds me of those early century photos of fragile, pale, ladies prone to fainting.
Yes, indeed, chronic illness life is a struggle even with all my best efforts. Where I used to carry the burden of keeping the house clean, organized and stocked, my loving hubs and kiddos take the brunt of those jobs. Suddenly, I am a sage, providing tons of advice but not so much action towards physically completely our goals. I am a boss at anything requiring research though and my family never fails to let me know this contribution is wholly appreciated.
The chronic illness appointments are coming out the wazoo lately. The primary focuses right now are my digestive and nutritional issues although through using these supplements alongside my medications I am back up to a decent weight of 120 pounds!
Still, all the testing only leads to more testing and I often wonder if they will ever figure it out completely. At my last GI appointment, my doctor said I need to start thinking about a getting a tube feed placed to account for the calorie intake I can never seem to succeed without consequence. I am considering it. I am so exhausted ALL the time.
Since going off the TMedPharma Protocol my migraines are worse as are my night sweats, pain, depression, and anxiety. In fact, it is my anxiety stopping me from emailing the company to get the protocol started again at an affordable price. Luckily for me, I connected with Immunize-labs and will be soon demoing a comparable product. From my lengthy experience with nutritional issues, I know many of my worsening issues are directly related to my low caloric and nutrient intake over all. For now, I am going to wait until after our move to address the possibility of a tube feed.
This month’s testing included a vascular ultrasound to determine the presence of Superior Mesenteric Artery Stenosis and/or Celiac Artery Stenosis. Interestingly, while the incidence is not well-documented, a simple google search for these conditions along with the Ehlers-Danlos Syndrome query produces many real-life stories of both vascular problems of the gastrointestinal system correlating with EDS diagnosis.
What’s even more interesting is recently a study proclaimed the mesentery of the GI system is in and of itself an actual organ with its function lacking a clear outline but it is a definite structure. The mesentery is one continuous organ throughout the GI system containing vascularized vessels, connective tissue, and important immune system components, all of which are crucial to GI function. Further studies plan to illuminate the function but this may be the missing link between stomach pain, nausea, motility problems and elimination problems when routine gastrointestinal testing comes back inconclusive for pathology.
Life synchronizations always work out for me in the way of chance meetings. The tech doing the ultrasound disclosed to me she had the same problem my doctor was looking for in me and the vascular surgeons at the hospital helped her. Once I was able to see her, I could see she was a classic picture of Vascular Ehlers-Danlos Syndrome. I told her to look it up and gave the name of my geneticist. She seemed interested and not weirded out by my instance. Still, the results for my test were negative and we are still left with questions as to why my GI issues are so bad.
Last week, I went for an Endoscopy with a therapeutic stretch to my esophagus and biopsy my tissues for pathology. The issues with swallowing and choking on my foods, pills, and drink is getting old and distressing. I continue to have pain with meals and at random, early satiety, seemingly erratically delayed motility and continuous nausea, cramping, bloating and other elimination issues but they’ve yet to determine why. This was my 5th billionth endoscopy so I wasn’t nervous for the procedure, only nervous it will be for nothing and leave us with even fewer answers as to why I am so affected. All I know is I cannot remember a time when my gut did not trouble me. It’s a maddening cycle for the Ehlers-Danlos Syndrome patients with gastrointestinal consequence.
At any given moment, often without trigger factors, my GI pain and distress will render me helpless until it passes. During the worst of those times, I stuck with a clear liquid diet for a few days and things would usually calm down within a week or so. Things are different now because my GI distresses are numerous and multiple times daily. It takes me around 5 hours after waking to work up the gumption to eat only a small amount of food. So for the past month, I can’t seem to eat more than 1 or 2 times a day equaling up to no more 700 calories, if I’m pushing it.
In other news, I had a DEXA scan which came back “normal” with the recommendation to repeat in one to two years or sooner if I start losing a lot of weight again. I was honestly surprised by this result as most of the women in my family had a significant bone loss from an early age. Hmm, maybe all those years of exercise and Yoga did do some good after all!
Still, my musculoskeletal pain, neuropathic pain, and physical limitations because of said pain take a great deal of quality away from my life and we still have no definitive answers as to the cause of all this beyond the general explanation of Ehlers-Danlos Syndrome. I am scheduled to see a rheumatologist in May and hope this will help to better categorize my difficulties under the appropriate diagnostic codes so that my insurance will pay for disease management interventions.
I suspect Sjogren’s Syndrome, Polymyalgia Rheumatica, Fibromyalgia, and/or ANA Negative Lupus. I am also questioning the possibility of late diagnosis cystic fibrosis or some variant thereof due to my history of lung collapse, activity intolerance, frequent decreased oxygen levels and inability to absorb fat on my own. Look forward to an update when I finally make it to a Rheumy after the recommendation was purposed by my cardiologist in 2014 after I went into acute kidney failure for no good reason.
Ah, the Spoonie life…. Not so glamorous at all!
The week before last, I went through another round of urodynamics testing to quantify recent finding of urinary retention and to see if I need to start catheterizing myself. These studies were just done by my former urologist less than a year ago but with my new urologist finding my bladder is starting to prolapse and my continued struggles with painful urination, leaking and difficulty starting my stream, the doc thought it wise to see how my results compared.
Last year, I barely got 100 milliliters of fluid in my bladder before I felt the urge to go. This time I was just under 1000 ccs of fluid before I felt the need to go but it took 15 minutes for me to convince my bladder to get with the program. The doctor did a urocystoscopy and said the lining of my bladder looked “ok.” He discontinued my Ditropan to see if that helped with the retention and said to come back in two months to see where I stood with everything.
Well, all it took was a few days off the Ditropan to aggravate my POTS into scary territory. Before starting the Ditropan almost a year ago, I was going 3000 mililiters daily. It was exhausting! Every time I drank fluids I needed to pee urgently within a few minutes, every time. By the evening of the first day without Ditropan, I started to feel and look dehydrated and barely sitting up in bed my heart rate climbed to 135 BPM while my oxygen made its random drops making my whole body tingle with confusion. Scary! On the second day without the Ditropan, it got even worse with getting a horrible sense of doom coming over me. I checked my heart rate to find it resting at 40 BPM. Normally, you would call an ambulance for these kinds of symptoms but instead, I took my Ditropan and waited it out. By evening I was back to my baseline, which is being able to sit up and transfer without getting severely winded. Needless to say, I will be emailing the urologist to discuss this issue and continuing my Ditropan.
Another important development over the first few weeks of 2017 was finally getting an appointment with Neuropsychology for my cognitive and sensory issues worsening over the last few years. You can read more about that here but in short, I will be getting testing for a lifetime of issues possibly related to an underlying diagnosis of Asperger’s disorder, now included as a part of Autism Spectrum Disorders as defined by the latest Diagnostic Syndrome Manual of Psychiatry. In addition to investigating this avenue, testing is prudent considering the decline and increased struggles with memory and cognition. Another piece of the huge puzzle of my Chronic Illness Life with Ehlers-Danlos Syndrome to put in perspective with consideration to my care.
I am super pumped to get the move over with and begin transitioning my care over to a new area with, hopefully, a better understanding of my case. I’ve noted more initiatives to raise Ehlers-Danlos Syndrome awareness in the state we are moving to and I see active groups in the areas so I’m assured there will be support available. Going into my second year as a diagnosed official Medical Zebra is less than glamorous. I would give anything to have an ounce of the old me back from the debility of this disease but instead of dwelling in my grief, I am raising awareness and arting up my feels when I have spoons to spare.
There are many more things I would like to elucidate on in this multi-faceted update, particularly on all the current events going on in the world. That is something I will save for my Stomach-vs-Heart: The Art of Survival Blog/Website where I share my art, creative writings and other musings from a neurodivergent mind. Creativity helps me cope with the decline I’ve experienced in the last two years and helps to soften the blow of the losses so I’d love to share my work with those interested. Be forewarned, there are and will be sensitive topics discussed and represented. I am an all-encompassing weirdo, in case it was unclear 😉
I hope to update more routinely again after the move and now so many tests and appointments are out of the way. The winter 2016-2017 took a beating on me in a lot of ways but I am still here and excited to keep moving forward. I am excited to review some incredible chronic illness products in the coming months so be sure to subscribe here for updates to this blog. I noticed quite a few new followers here as of late and I just want to say thanks so much for letting me capture your attention to my humble chronic illness journey! I hope to continue to curate quality chronic illness life with Ehlers-Danlos Syndrome related content for years to come!
May your silverware drawer be overflowing with spoons exactly when you need extra!