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When we were in Joplin Missouri for refresher training,Toad and I were able to participate in a commercial for one of our sponsors. I think the dogs look great! Remember @heartlandk9s is taking applications now!! (at Joplin, Missouri) https://www.instagram.com/p/CHNUaS5A_IJ/?igshid=leg08239u1wx

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While in Joplin, MO for two weeks of refresher training with Toad. We were able to participate in doing a commercial for one of our sponsors in the area. I think the dogs look gr eat! !! don’t you? @heartlandk9s is currently taking applications. #commercial #veteranshelpingveterans #veteranssupportingveterans #ptsdhelp #disabledveterans #veteran #chronicillnesswarriors #chronicillnesses #anklemobility #hypermobilitysyndrome (at Joplin, Missouri) https://www.instagram.com/p/CHNSc0QgyLb/?igshid=1f5bhbo8p165m

#commercial #veteranshelpingveterans #veteranssupportingveterans #ptsdhelp #disabledveterans #veteran #chronicillnesswarriors #chronicillnesses #anklemobility #hypermobilitysyndrome

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#ehlersdanlossyndrome #servicedoglife #zebrastrong #chronic pain #chronic illness #chronically ill #disability #ehlers danlos syndrome #disabled #disabledveteran

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#ehlersdanlossyndrome #servicedoglife #zebrastrong #chronic pain #chronic illness #disability #ehlers danlos syndrome #disabled veterans #hypermobile ehlers danlos #hypermobility #ehlers danlos zebra

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Before leaving I went to dinner with our trainer Friday night (bottom right photo). Saturday morning I went to a breakfast meeting with @heartlandk9s President Chris and the Director. (Bottom left) Top photo was taken while Toad and I, other veterans did a commercial for one of our sponsors. In the photo next to me is the Director of the organization along with two other veterans that @heartlandk9s has helped receive a service dogs. The video is of Toad Trying to work with special interactive treat dispenser since I will be buying toys like this one of the interactive treat toys. I wanted to gauge his level before ordering any myself. There's a video of him playing and finding his treats. Of course I’m in the background cheering him on. Of course I can’t help but mention my colorful Crocks, a gift from my hubby just before leaving. I think they look pretty good with striped pajama pants. LOL The last photo collage:Too often people only see the daytime activities of our service dogs. For me for an instant toad is both mobility and PTSD trained. So he helps stabilize me when walking and helps me get up and down there’s a variety of different things. But his behind-the-scenes type work is PTSD. That’s why I made Photo collage in this post. https://www.instagram.com/p/CGmALPBglkx/?igshid=1h4yt67sx80ws

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Apparently Toad and I over did our walking yesterday. We went to Granby, MO for the car show. It was in an effort to work on Toads distraction training. He’s not doing very well when it comes to smelling things in the air or noises and stuff. I’ve put him back to the prong collar in hopes that we can work on those distractions. Otherwise I think we’re doing pretty well. Today was a lazy Sunday we did nothing at all. I’m hoping to find a store with Halloween animatronics in it with noises so I can see how well he does. I we needed a lazy day. We did a repetitive training but not much. Toad played outside and then got a much needed bath. Sure does love being wrapped up in a towel! Love this big guy so much! https://www.instagram.com/p/CGOgCTegiN2/?igshid=1jrduqettak78

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This past week of refresher training has been such an eye-opening experience for me. You’re getting a brief glimpse into some of the things that we’ve been doing. Not necessarily the training side of things. Petland is A business that has help back Heartland K9s For Veterans and the HEAL. All of this week I’ve been working closely with Morgain refreshing my memory on commands for mobility. Of course toad knows his stuff so the refresher training is specifically for me. I’m making every effort and will continue to make every effort to work with Toad daily. The PTSD training that he has is an effortless bond that we have. The refresher training is not needed in that area at all. But due to surgeries, Covid, my lack of remembering commands this refresher training was necessary in order to utilize my service dogs fullest capabilities. This time has also been a reminder that he is not just a pet but he is medical device that can both physically and mentally enhance my life. If I don’t know or remember how I need to use him to his fullest capabilities then we are lacking as a SD Team. The photos are of different areas here where we are staying and well as one of the board member Mystery Machine. #hk9 @heartlandk9s #operationheal #veteranshelpingveterans #ptsdservicedog #mobiltyservicedog #k9leadstheway #petland #servicedogsofinstagram #servicedogssavelives #veteranservicedog #poodlesofinstagram #servicedoglife #zebrastrong #ehlersdanlossyndrome #eds #traing #workingdogs #workingdogofinstagram (at Neosho, Missouri) https://www.instagram.com/p/CGJeTeqgir9/?igshid=i9qkutc190qv

#hk9 #operationheal #veteranshelpingveterans #ptsdservicedog #mobiltyservicedog #k9leadstheway #petland #servicedogsofinstagram #servicedogssavelives #veteranservicedog #poodlesofinstagram #servicedoglife #zebrastrong #ehlersdanlossyndrome #eds #traing #workingdogs #workingdogofinstagram

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This is organized Chaos, medical equipment, feeding tube supplies and equipment, clothing for two weeks, medications and powdered/liquid supplements for feedings, bible study stuff and Toad’s box. I’ve basically kept quiet because I didn’t want to jinx anything. Plus I guess I was getting a little nervous. I Toad and I are traveling to Joplin Missouri for some refresher training. We will be staying in Neosho Missouri at a place provided by the organization. For now I head to bed hopefully to sleep!! God is so good. (at Kansas City, Missouri) https://www.instagram.com/p/CF6bKB0gbSt/?igshid=127l84lw9ki54

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At the beginning of this month I thought I posted this here. It important to me to give #shoutouts to those who have positively impacted my life. Since September is Service Dog Awareness month this shoutout goes to Toad and the people who put us on my path together.Due to this I hope to post SD information throughout this month. There are really not enough words to express the relationship between a service dog and it’s handler. A relationship I would not have without the people @heartlandk9s and @trademarkpoodles . Those that have seen us together know we have a unique a bond and that he loves what he does as Mobility and PTSD Service Dog. In the short fifteen months that we’ve been together he’s helped me fight many battles related to Service connected injuries and illness. Be sure to follow him on his Facebook by the same title. His social pages serve as a way to educate people about the Service Dog Team life and all that it entails. That includes positive and negatives. Next month , we hope to travel back to Joplin @missouri for refresher training at Heartland K9 With chronic illness come uncertainty of the question “what happens next?” All I know for sure is God has made a plan for me to serve my purpose with this fantastic furry guy next to me! “for it is God who works in you to will and to act in order to fulfill his good purpose.” ‭‭Philippians‬ ‭2:13‬ ‭NIV‬‬ TOAD for sure at least to me is The Official Awesome Dog! https://www.instagram.com/p/CFUetf6AW36/?igshid=81vf226nrdns

#shoutouts

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Today was just one of “those” days but everywhere I looked I could see those big brown eyes 👀 watching me, reassuring me and showing unconditional love. God has blessed me is so many ways. Toad is just one of those many gifts. The staff of @vakansascity are always helpful and kind and often make days like today more tolerable #thankyoumedicalprofessionals #godisgood #godisgoodallthetime Yesterday Toad received his “oops we’re sorry box” from @bark Box, last one he got he didn’t like the toys so they sent a new one in its place! He just loves it!! #thanksbarkbox #servicedogsofig https://www.instagram.com/p/CEnSpHiASni/?igshid=vssz0vbc0u73

#thankyoumedicalprofessionals #godisgood #godisgoodallthetime #thanksbarkbox #servicedogsofig

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Yesterday was a good day but difficult. Finally got in contact with a committee member at Kansas city VA who has been working on the standard operating procedure for service dogs and how they are allowed on the KCVA campus. I hope for Toad and I to have some input and maybe represent a legit SD Team. I was preparing myself mentally for my GI appointment when I was given a mask as a gift. I just love the compassion of the staff at the KCVA. Toad was there double time for me when my anxiety hit hard and my medical ptsd when dealing with a new fellow in GI. I’ve officially lost 7.5 lbs due to continuous problems with the anastomic ulcers in my “stomaphagus” = 2017 Esophagectomy with my stomach pulled up. I knew I was going to hear the dreaded words “let’s see how the medication works“. I’m back to complete dependency on my feeding tube. At 102.5 pounds somethings got to give. And it won’t be me. I know God has got me and we will figure out what needs to be done. He brought Toad and I together last year for a reason and today I found comfort in him and Toad. In the meantime this is a setback in my quality life. I’m a “overcomer”. I am #ZebraStrong #servicedogsofinstagram (at Kansas City VA Medical Center) https://www.instagram.com/p/CCNAQ9ugzSt/?igshid=7evqdlqiekg4

#zebrastrong #servicedogsofinstagram

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Yesterday’s post 6/16/20 Today was an extremely difficult day. Due to the fact that I am dealing with ulcers, acid reflux and bile reflux. Also, unable to keep almost anything down including water. Dr. Lemons the anesthesiologist said full sedation was really not an option for me. Fact is I had to be on my stomach for the surgery and even regular anesthesia was a risk due to my G.I. issues. They were concerned I may have reflux happen while under and experience aspiration. It was decided that I would have to have light sedation, better local anesthesia and position me in the inclined position would have to work. Before going back I prayed out loud that the great physician in heaven would get me through. I knew my friends and family were praying for me. Each nurse came up to me, told me they would get me through. When I arrived in the operating room the staff had piled blankets up into an incline. Everyone made sure I was in a comfortable position and reassured me that they were there for me. The medication relaxed me and put me into trance like sleep my Doctor worked on numbing me as much as possible. Needless to say I felt almost everything. I could hear and feel the chisel like thing being hit and pressure and pain moved up my back and into my thigh. Thankfully there was one nurse that never seemed to leave my side. Most of the time she held my hands through the most painful times or gave me medication in an effort to help. At one point I realized it was really my “Way Maker” sitting there, holding me as much as possible. The promise keeper was my God and he was there seeing me through my storm. I'm home now. The next couple weeks are going to be a struggle but I’ve fought these little battles one step at a time before. The only difference is I have better communication and relationship with the Heavenly Father now. I’m so #thankful #goodnurse #greatmedicalteam #surgerylife #ehlersdanlosproblems #achlasia #si #fusion #sijointdysfunction #sifusion #pain #chronicillness #chronicpainsucks #greatful #universityofkansas (at The University Of Kansas Hospital-Indian Creek Campus) https://www.instagram.com/p/CBisWi3gjDd/?igshid=1so69ng274nz7

#thankful #goodnurse #greatmedicalteam #surgerylife #ehlersdanlosproblems #achlasia #si #fusion #sijointdysfunction #sifusion #pain #chronicillness #chronicpainsucks #greatful #universityofkansas

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I know it’s been a while since I posted any photos of towed. This morning I had to drop him off at the vet for a good grooming and nail clipping in vaccinations. I always hate being away from him. He also seems to have difficulties getting groomed from the legs down. Thankfully my vet is working with him through this problem. These photos are of the last couple weeks when where I gave him a bath and he was totally drenched and looks so funny I had to take a photo. The other ones are of playtime. Then the very first photo is of the before grooming shot! (at Lakewood Animal Health Center) https://www.instagram.com/p/B_0K8VZgZs2/?igshid=12w1b4bkpuhpx

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So I decided to finally post this photo. I had my Esophagectomy, majority of my esophagus removed in November 2017 and had come off of the feeding tube in May 2018. But ended up going back on the feeding tube in August 2018. Due to rapid weight loss, malnutrition and failure to thrive. It has taken me a while to gain 14 pounds but at the moment it’s where I’m maintaining 107ish. I’m still largely dependent on my feeding tube. I’m currently 18 hours continuous feed. Although I’m eating many regular foods. Several foods I have to avoid for one reason or another. I must chew everything completely or I can’t swallow it. I’ve had to start putting my medications through the tube again. There are still several G.I. issues that must be addressed but with the COVID-19 situation everything has been put on the back burner. I am so grateful to be where I’m at today compared to last year at this time. I know God is walking with me through every storm and will walk me out of every storm my face. https://www.instagram.com/p/B_FfGJDDtni/?igshid=yoxnymh3tluk

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First I wanted to check in see how everyone is doing whether you are zebra or not. then yesterday it was 35° go figure. ❄️ brrrr! This past week was a little crazy for me. Earlier this past month I noticed a lump in my breast had gotten a little bit bigger since August. I was checking just before I was supposed to have my yearly mammogram. So they decided they wanted to do a diagnostic mammogram and an ultrasound. But I need my medical records of my last mammogram first. I took care of ordering them once they were received they made a new appointment for me. The photos are from St. Luke’s East Hospital. That lump was a little bit bigger than it was this past August. And because I had had a cyst removed 20 some odd years ago I was worried that it might be another cyst. But the doctor explained to me that it is scar tissue. Probably from when I had a cyst removed and then my breast lift and reduction. I’ve added photos of the people that are on the front lines of this COVID-19. It was so nice this past week that I opened the windows in my craft room. My 16-year-old kitty cat trouble enjoyed the nice breeze. The last photo in this group has no explanation needed. (at Saint Luke's East Hospital) https://www.instagram.com/p/B-lQb-vDjo-/?igshid=1eq3hqf8qik4u

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As all of you know if you don’t know by now I have a connective tissue disorder called Ehlers Danlos syndrome. I myself have referred to it as the “junk drawer disorder” due to the long list of comorbidities or conditions you can have a long with the primary condition. The definition of Comorbidity noun or plural noun: comorbidities Is the simultaneous presence of two chronic diseases or conditions in a patient.

When I discuss my medical issues many times it’s actually these “comorbidities” I am talking about. Although the majority of my medical issues can be explained by my genetic disease called Ehlers Danlos Syndrome. The majority of the time when I discuss my medical issues I get the looks of disbelief or some have even asked “do you really have all these problems?” The answer to that is simple, it’s yes!

So I decided I’ll list only the comorbidities that I have confirmed diagnoses (dxd) of. During the next couple of months I will discuss these medical problems in more detail.

These are not in any specific order. The list is a Semi-common Comorbidities (Unofficial) list. It's how the article labels it and I think it’s smart to label it this way. Mainly because there currently isn’t any statistics, how common these comorbidities are among EDS patients. The original list can be found at the website at the bottom of this post.

FELLOW ZEBRAS I’d like your input on anything you see that you also experience or have been diagnosed with.

~ Chronic Pain * dxd neuropathy*, neuralgia Myofascial Pain Syndrome* ACNES

~Fibromyalgia*

~Mood disorders dxd Anxiety*, PTSD*, Major Depressive Disorder*

~ irritable bowel syndrome IBS*

~Incontinence* at any age (often from occult tethered cord and/or MCAD or allergy induced) only experienced not diagnosed

~Uterine or rectal prolapse, pelvic floor dysfunction*

~Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)

~ Arthritis of all kinds, Osteoarthritis* in the spine, neck and hands, but RA common especially early onset

~ Insomnia* also referred to as “painsomnia”(trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergic)

~ Hypotonia (unusually weak muscles despite “training” or physical therapy)

~Dizziness* (with or without syncope)

~Thyroid issues (high and low, often auto-immune despite normal TSH “levels For me Hyperparathyroidism*

~Deviated septum

~Chronic and recurrent sinus infections and sinusitis* (allergy shots have helped this)

~Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed“ bracing is helping

~ PCOS and menorrhagia (very heavy periods)

~Tendonitis* and bursitis* of all kinds (aka “soft tissue rheumatism”, alt. tendinitis)

~Varicose veins* and spider veins, often early onset, easy bruising*

~Migraines* and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)

~ Strokes* (I had a TIA 2012)

~Mitral valve prolapse* (mine is mild)

~Easy bruising* often from no apparent cause or injury

~GERD* (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in response to histamine from food reactions)

~Gastroparesis* (slow or no stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS, possibly from impinged nerves & vessels

~Sciatica* (VA lists this as SI Joint Dysfunction

~Bilateral hip dysplasia* (sometimes seen at birth, and later) ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)

~Malabsorption and malnutrition* and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorption).

~Electrolyte imbalances* (often low potassium)

~Osteopenia* (low bone density) and osteoporosis* (brittle bones), often early onset

~Hiatal hernia* (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)

~Costochondritis* (pain at front rib attachment point to sternum)

~Chondromalacia* (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)

~Frozen shoulder

~Striae* aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)

~Bruxism* (jaw clenching, tooth grinding)

~TMJ* pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)

~Restless Leg Syndrome* (RLS) and leg cramps (often eased by increased magnesium)

~Plantar Fasciitis*

~Chronically low Vitamin D and B12 levels* (caution urged for those with MTHFR mutations with the latter, may need a different form of Vi

Weak or crowded teeth, many need early or partial dentures

~Receding gums*

~Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances

~Deviated septum (misaligned nasal cartilage)

~Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngeal tissues

~Esophageal spasms (can extend to anywhere along GI tract also)

~Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)

~Liver problems, including fatty liver and lesions, enlarged liver

~Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)

~Breast Ptosis (sagging, droopy breasts) had surgery to lift and reduce

~Leaky gut syndrome

~Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more

http://ohtwist.com/about-eds/comorbidities

Remember Stay Zebra Strong!!

#common #comorbidities #ehlers danlos life #dysautonomia #pots #medicalptsd #medical #list #zebras #zebra #disability #ehlers danlos #ehlersdanlosawareness #self care #quotes #ehlers danlos problems #disabledveteran #tubie #veteran #chronic pain #spoonie