kajiraangel-servicedogteam - Tumblr blog

[kajiraangel-servicedogteam]

We went out to lunch today and Jax was a perfect angel. Later in the evening we went to the gym and started desensitization training there as well, I was impressed with how few things got his attention, mostly just runners on the treadmill. https://www.instagram.com/p/Bu-5GTXlYkx/?utm_source=ig_tumblr_share&igshid=1o2innfu14ywm

[kajiraangel-servicedogteam]

Is my SD doing more than I thought??

Earlier tonight I wasn't feeling great, I could feel a migraine starting, which I knew was coming because my SD alerted, and took my sumatriptan 50mg tablet. My dog was acting like "velcro dog" and kept alerting. Over the next 30-60 minutes I kept feeling worse, so I decided to do a blood sugar check and it came back a 76. It really made me wonder if super special service doge has been altering to blood sugar levels for a while now and I just never figured it out. It's not something I trained or asked if her during the past 11.5 years we've been together. It's only been recently that I started monitoring it myself, but just maybe she knew something I don't??

[kajiraangel-servicedogteam]

I might have EDS??

I saw my new doctor today for the first time, and it went really well. She is having me do a LOT of bloodwork and a stool test (looking for H-pylori).

Her first impressions, and the reasons for the bloodwork, is that she's looking for Ehlers-Danlos markers. It would seem that's her first instinct based on all my symptoms. If the blood tests don't come back positive for EDS , then she'll give me a referral to a rheumatologist to further investigate my joints and pain. She's also requesting an ultrasound of my abdomen, though I can't recall now what she's looking for, something to do with my spleen.

She also wrote me the referral for the orthopedic surgeon for my knee, so I'll be able to get that taken care of, because of all the issues she also renewed my handicapped parking placard.

She has agreed to write the "prescription" for the new service dog so that I can get into the SD school I want to use for the mal as well.

I spoke to her about the new wheelchair, and we're going to discuss it later, but it sounded like she was ready and willing to write the prescription for the custom chair to go through insurance. I think she wants to receive my medical records from the 12 doctors and get all her test results back first though.

So, that pretty much summarizes my visit. lol

It will be enlightening to see what all the talks are at the end.

[kajiraangel-servicedogteam]

Today was a good day. I actually got things done, I don't feel too bad and there's almost no pain. So, super special service doge and I went to Cafe Rio to pick up a tostada and then stopped by Starbucks to get a peach tea. I won't be able to eat much, but at least I'll enjoy what I do get in! Usually I post when I'm irritated, upset or needing comfort. However, today I chose to celebrate the positive and share a good day. I hope those of you with chronic illness choose to celebrate your good days as well.

[kajiraangel-servicedogteam]

Super special service doge Akira trying not to look at me, but still wanting me to figure out that she likes goldfish crackers too. lol https://www.instagram.com/p/Bl36MsBhAnV/?utm_source=ig_tumblr_share&igshid=f6vrekcjjqor

[kajiraangel-servicedogteam]

After our evening out super special service doge and I are relaxing on the couch playing games with my youngest son while we have a late night snack. She stays so close and takes such good care of me. The are no words for the love and trust between a service dog and handler.

[kajiraangel-servicedogteam]

Super special service doge Akira went out with us to Main Event and seemed to enjoy watching the kids play games, enjoy laser tag and bowling and just hang out with the adults while we chatted and caught up. It’s always great to meet up with old friends again!! https://www.instagram.com/p/BlzORIbhA6F/?utm_source=ig_tumblr_share&igshid=18okj1kgta18z

[kajiraangel-servicedogteam]

Ring-Around-the-Specialist

I'm currently in a position where I'm frustrated with my multiple specialists. I've had some symptoms for many years that have become more intense over the past 12-18 months and I'm trying to get my doctors to listen and either figure out which chronic illness they're related to or diagnose something new. Personally, I highly suspect that I've had a couple other illnesses lurking in the background that chose to not show their nastier symptoms until the past couple years. Either because of age, or because they were triggered by other illnesses or perhaps just because I've grown weaker or less tolerant in general and now I'm more affected. Whatever the reason, these are symptoms I've had for probably 20'ish years that have in the past 12-18 months severely increased in both intensity and frequency.

Here's the thing: I tell my ENT she says I should really discuss it with my neurologist. So, I talk to my neurologist and she says that's not really something she handles and that I should discuss it with my cardiologist. So, of course, I take it up with my cardiologist and he tells me, "well, this wasn't a problem a year ago and I doubt someone your age developed this so quickly, I don't see any reason to worry now." At this point, I'm sitting there thinking, "seriously?!?"

This is right about where I was ready to give up. However, after reading someone else's post earlier my desire to advocate for myself and press on until someone will take me seriously has been renewed. I am determined to find a doctor who will listen, believe and take me seriously. I need to find someone who isn't going to pass me off to another specialist and tell me that it isn't really within their specialty.

I'm 45 years old this year, good think that by now I could have this stuff figured out, but apparently not. Chronic illness is not only lifelong, but also ever changing, there's just no way to know where it'll take you on the journey.

[kajiraangel-servicedogteam]

This is something I needed to read tonight. I've been having a rough time with my doctors and had considered not even bothering with future appointments outside of the required follow-ups every 4-6 months. I needed the reminder to push through and advocate for myself.

During all this chronic illness stuff, if there is one thing I could tell people going through the same thing, it’s this - TRUST YOURSELF. You know your body. Even if you leave a doctors office in tears, feeling small and stupid, feeling upset - trust your gut instinct. If you KNOW something is wrong, do not let a doctor dismiss you or make you feel like a moron. See a different one, and a different one, and a different one - until one listens. Until one HEARS you. Until one investigates. You are not crazy, you are not a hypochondriac, you are not “asking too much,” you are not being dramatic - you know you. You know your mind. You know your body. Keep fighting. Always fight. I know it’s exhausting, I know it’s frustrating, I know it’s depressing, I know it hurts. KEEP FIGHTING FOR YOU. YOU ARE WORTH THE FIGHT. 

[kajiraangel-servicedogteam]

Things Still Get Done, Even On Bad Days.

The past few days have been more rough on me than usual. My joints are more painful, my muscles ache more and it's been more difficult to both eat and keep food down.

However, when some part of you feels sick and/or sore every day then sadly you can't predict when the better days will be versus when the worse days will be, and no matter what things must still get done.

So, I went shopping, ran errands, had a fun 4th of July with family, had a game night with family, bathed two dogs, did some cleaning and even put in an attempt at the gym this week. It was long and tiring and now I'm paying the price. I'm just so thankful that my SD can help out and is so in tune with what I need.

However, I still have commitments to meet over the next couple days and I will smile through through the pain. I will close my eyes, breathe and relax to settle my stomach when no one is looking and go through plenty of ginger TummyDrops. Why, you may ask? Because it's for family, and for memories and to see them smile.

Perhaps the next time I'll be forced to cancel, but unless I think I'll be set back by weeks, instead of a few more days, then I'll give my family all I can, especially my kids and my parents.

Since it took so much out of me, but I'm so proud of how fluffy and pretty she is right out of the bath, I'm also including the photo of super special service doge Akira after her bath this week.

[kajiraangel-servicedogteam]

Akira not caring about the fireworks while we watch the show tonight. I hope everyone else, especially those do find the noise triggering, are doing well tonight. Happy independence day America!!

[kajiraangel-servicedogteam]

Chronic Illness Symptoms: how many diagnoses does one really need?

I just wish I knew exactly which symptoms could be attributed to which illnesses. Occasionally I can't help but wonder, "am I diagnosed correctly?" I keep thinking that maybe instead of having like 9 diagnoses that each cover just a few symptoms each maybe there are 3-4 diagnoses that would could cover all the symptoms between them.

I have been diagnosed with chronic migraines, which technically definitely fits, but I wonder if that's where the diagnosis should end for me. I've also been diagnosed with Meniere's Disease, and i can't help but wonder if the migraines are directly tied into that and not the stand alone condition that it's currently being treated as.

I've also been diagnosed with vestibular migraines, similarly, how am I supposed to tell the difference between a VM attack and an MD attack during shorter attacks that are within normal VM ranges?

I have also been diagnosed with TMJ, I spend a lot of time wondering if that contributes to my Meniere's Disease, or to my migraines? However, once again, it's something that is being treated as its own individual issue. None of my doctors are questioning how each of these could affect the others.

I also have Hashimoto's Thyroiditis, an autoimmune disease, this disease has affected how I feel and my weight for years, however, according to my endocrinologist it's finally under control and within acceptable limits. Yet, once again, how does this play into the other diagnoses? Does it affect anything?

Sadly, I still have so many other symptoms that the doctors I currently have keep telling me, "that isn't my specialty" or "everyone has that every now and then." Except, I talk to family and friends and either they don't have the symptoms I do, not even every now and then, or if they have had them it turned out to be something that needed treatment.

I just wish that I felt like someone was listening. I wish it felt like someone actually believed me. I wish just one of them could witness an attack when my pulse raced and it felt like a heavy weight was sitting in my chest while I was completely out of breath. Or how hard it is just to stay standing when I go outside in the heat and it feels like I got the wind knocked out of me and I begin to feel sick because I can't self regulate temperature. Or that one of these doctors would feel what I feel after eating too much food, the wrong food, not enough food, etc. The cramps, bloating, acid in my throat, feeling like there's a brick in my stomach for 6-12 hours depending on what I ate. Not to mention the constipation and pain when I do get to "go." (which is usually every 7-15 days)

Anyway, thank you to anyone who took the time to actually read all this. I just needed to complain out loud somewhere. I'm just so tired of bottling everything up and desperately hoping the next doctors appointment will change something. I need more answers, I need to know why I feel the way I do. Even if no one can change it I just want to know why and put a name on it. Besides, if we're know what it is then there must be *something* to try for relief, even if it's minor or temporary.

[kajiraangel-servicedogteam]

This brought tears to my eyes because it summed up my life so well. All those things I never say outloud, were written here.

Living with chronic illness is waking up every day and rolling the dice. The question is never “Will I be in pain today?” It is “How much pain will I be in?”

“Wil I be able to be productive?”

“Will I push myself too hard”

“Will today be a good day or a bad day?”

(Good doesn’t mean pain free. It means manageable)

“Can I leave the house?”

“Will I have an emergency?”

“Will I get stuck vomiting in a public restroom or port-a-potty?”

“Will someone harrass me for using a mobility aide?”

“How many ignorant comments and intrusive questions will I hear?”

“Will I pass out today?”

“Is it all gonna hit me at once and will have a random mental break down in the middle of the grocery store?”

“Will I be able to do the things I planned?”

“Will I have to cancel plans again?”

“Will I be guilt triped for canceling said plans?”

“Will someone touch me or my mobility device without my permission?”

“Will someone "help” me in some way and then hold it over me/use it against me later on?“

"Will the pain randomly hit me all at once?”

“What if a flare starts in the middle of doing something important?”

“Will people be understanding if I can’t do something?”

“Will I accidentally hurt myself today?”

“Will the things I do today leave me bed ridden tomorrow?”

These are just a few of the questions we have to face in the morning. Every day is different. Chronic illness and disability fluctuate. What I can do one day, I can’t another. What I can do one day can leave me in a lot of pain and exhaustion for multiple days to come. And some days it won’t. But it will always at least hurt a little. And thats difficult to explain to people. People question the validity of your illness on your good days and on your bad days its “but you could do the thing yesterday, so why can’t you today?” I don’t know. Honestly, I have no idea. And that is the problem. I don’t know what the day holds. I don’t know what symptoms will be worse each day. I don’t know how exhausted or in pain I will be, but even if I wake up feeling alright- they could all come and hit me at any time and any place. And idk how the actions of today will affect my tomorrow. Its all a balancing act, but even though I TRY to plan, it is all too unpredictable. Then there are the decisions we have to make every day, the questions remain the same- but the severity of the results can differ and is unpredictable.

Every meal hurts. I could get naseaus or even violently ill if I eat, but if I don’t eat it also hurts and I could get dizzy and faint. So what do I do? Roll the dice.

Staying at home can either be a good thing or a bad thing. I may need rest and leaving the house could make me have an incident. But it can also be a bad thing, because I may need to get out that day. I may need sunlight and to socialize and to move around. If I stay home, it could make it worse and I could get really depressed. But leaving could make it worse too. And I don’t know which one I should be doing today? So what do I do? Roll the dice.

Showering can ease my muscle and joint pain and I use it as a coping mechanism for depression, but it also can give me a different kind of pain and extreme exhaustion, which may end in me sleeping the rest of the day and waking up more exhausted. What kind of pain do I want today? Roll the dice.

Will taking a nap make me feel better or worse today? Roll the dice.

And on and on it goes. Every single day. And yet, we live our lives. We do what we need to do. We take care of ourselves and if we are able to, we follow our passions to the best of our abilities. I am happy, for the most part, with myself and my life. But that does not mean that I do not struggle. Because I do. Every second of the day. And I am proud of all of you who have to play this game every day too. The odds are pitted against us. The board was designed for healthy and abled people and still we keep playing. And I am proud of us. And we deserve better from the people around us. Every day we fight and every night we win. But in the morning, the game starts again. New rules, new scenarios, new pain.

And so for the people in my life that do not face this level of uncertainty, I need you to understand that I do. That I don’t cancel plans because I don’t want to see you. That I’m not faking it when I suddenly have an episode or symptom flare even though I was fine two minutes ago. That even if I’m able to do things I wasn’t before, that doesn’t mean I’m getting better. Its different every day and I could very well be bed ridden tomorrow. And its not me “giving up” to admit that. Because it is my reality and I do a damn good job of adapting and working around it. My mobility aide is not a prison and you don’t have to be sorry I use it. It makes it so I can do a lot of the things that I’ve always wanted to. It keeps me safe. I don’t choose not to eat something because I’m picky, it could make me very sick. I may have to sit down at any time, even if we are in the middle of a grocery store, so that I don’t pass out. My joints may randomly pop out of place. I could get randomly ill. etc. etc. etc. And I appreciate you sticking around. Because now there is uncertainty for you too. But having a team mate makes the game a bit less overwhelming. But only if the teammate tries to understand. I have had plenty of “teammates” who ended up pushing me towards failure. Plenty of “team mates” who failed to have patience and understanding. Who failed to show me the basic human decency that I deserved. And that continues to make the game harder, because now self doubt is another enemy I have to face. So if I have chosen you to be a part of my life, you don’t have to, especially if it is going to negatively effect both of us. But if I have chosen you, it means I trust you. No one knows the future. No one knows what the day holds. But for someone with a chronic illness, that uncertainty is much bigger, scarier, and more complex. And so I need you on my team if you decide to stick around. I need you to understand the reality of what happens to all of us everyday. Every step is taken carefully. Every action carefully planned in an attempt to bring balance. In an attempt to keep us safe. It is important to have that balance, because if we aren’t prepared we WILL get hurt. Every day there is a chance, but if we aren’t careful, that chance turns into an absolute. And so we step carefully. But even with careful planning, everything is uncertain.

And so every day, we wake up, and we roll the dice.

[kajiraangel-servicedogteam]

I usually post spoonie stuff, service dog stuff, chronic migraine / vestibular migraine, meniere's disease stuff, hashimoto's thyroiditis stuff and I'm currently being evaluated for dysautonomia, gastroparesis, chronic fatigue syndrome and sensory modulation disorder. I prefer positive, upbeat, encouraging support and I do still try to go to the gym when I can. (I can't drive, so I'm dependent on when my family can get me there)

attention

please reblog this if any of the following things apply to you/your blog, for i would like to follow you and most likely be your friend, thank you have a nice day

• disabilities -especially eds and pots • any positive posts or encouragement • personal posts • aesthetics (nature or otherwise) • actresses/fandoms • support blogs

thats all i can think of but definitely reblog if you are a spoonie, im not following nearly enough people!!!

[kajiraangel-servicedogteam]

Irritating Experience With A Local Restaurant

So recently, twice a couple weeks apart, I went out to eat with my family at a local restaurant and the guy behind the counter wasn't sure if my service dog was allowed in the restaurant or not and he wanted to speak to the owner about it. The first time he spoke to my daughter about the dog and she told him not to worry we would be sitting on the patio anyway, and he dropped it. The second time after I was finished ordering he chose to speak to my daughter about it yet again, she informed him of ADA law and that my service dog had the right to be with me inside the restaurant. He asked the owner who agreed and he shrugged.

I just had to go ask this guy though, why was he talking to my daughter and her fiance instead of me? Also, I handed him one of my ADA law cards in case he, or any other employees, had any additional questions regarding service dogs. I also let him know that he was allowed to ask two questions 1) Is it a service dog to mitigate a disability ... at which point he then interrupted and said, "and two, show me your registration papers." Then he sat there looking very proud of himself.

I, in turn, stared at him dumbfounded and said, "Actually, no, that would be illegal. There is no legal registry in the US and asking for something along those lines, and denying entry if they don't provide it, is most definitely illegal in the US."

He then went on to tell me how California restaurants are, supposedly, all demanding paperwork these days. Now, I know that CA has an optional state registry, but it does now allow or deny any access rights.

I never did get the opportunity to even tell this guy what the second allowable question is (what tasks does the dog perform) because he was so obstinate and argumentative about the paperwork issue. Honestly, it's not worth it to me to argue with an idiot employee instead of eating my dinner. Though, it does feel good to vent about it in a semi-public forum.

[kajiraangel-servicedogteam]

One of our many nights at the gym. Despite the issues that make the gym challenging, I try to go regularly and do what I can. Previously my "super special service doge" photo series was Instagram only, but it was suggested that I try Tumblr, so here I am. I figured I would start with a photo of my current SD, she is an 11 year old shiba inu and the light of my life. Her vet says she is good to work, but I plan to retire her within the next 12-18 months. I have a deposit down for my new prospect so I can start training as soon as possible. The breeder I'm working with is doing the eye, hip & knee testing plus the temperament testing in addition to keeping a close eye on size to ensure that the puppy will grow up to be big enough to do the mobility work I need. Which is partly why my current SD will be retired, she's far too small at 28 pounds for any version of mobility work.

[kajiraangel-servicedogteam]

Because my next SD will be doing mobility work, I'm reposting this information. I also wanted to add that no matter the weight ratio the dog should *never* be below 50 pounds. And it usually works well that the dog be between 30-50% of your height at the withers as well.

I got permission to share this from the person that put it together.

These are the commonly accepted guidelines for mobility service dogs.