Muddling along

There’s really not that much to update, but I’ll try and tell you all what’s going on.

I added to our complaint about how I was treated in the hospital, I was upset when that wrote me back saying they couldn’t fine my original complaint. At least they wrote me back, perhaps I’m now in touch with people who can make a difference. It’s upsetting that I had to say I felt my disability was ignored before I got the attention of someone. Yes I am considering writing to the States Disability board who enforces the ADA (Americans with Disabilities Act) We are now in the process of writing our a letter that will be sent to the hospital and Medicare. I haven’t contacted the state about my disability being ignored before now is because Medicare often takes care of that. We will then be sending the letters by registered mail so we get a signature that it was received

This has been incredibly hard on me since I do not remember a lot of my hospital stay. I don’t remember the first time I was going to be discharged before I was ready to be. However, I do remember the next day when I was forced to be discharged before we knew how the opioid they had just given me would react with me.

Forgive me if I’m not saying all of this with the proper grammar, I’m still incredibly upset about it all. The email I received stating they had no record of my original complaint has been a huge trigger. I need to get all of this resolved. I’m trying very hard to be a good advocate for myself. People do not understand how very hard that can be.

I have felt that my migraines have been less intense. About once or twice a week I had one that is untreatable no matter how much medication I throw at it. But I’m having Yellow days most of the time. (explanation of the traffic light system for rating migraines can be found here) That’s a huge difference. I don’t know if it’s because of the reintroduction of Botox, the nerve blocks, or the increase in medications. Which ever it is, I’ll take it. I just hope it gets better and better, all Yellow and Red days is simply unbearable.

I’m having some huge cravings for sweets, I don’t normally have that. It’s weird and it’s bothering me… it freaks me out to gain weight after I lost so much. I’m trying hard to eat as healthy as I can, but it’s even harder when I’m not able to cook for myself, and I’m tasting things differently. Foods I normally love just taste weird. That can be a side effect of one of my meds, but it’s crazy that my oatmeal and butternut squash taste odd. Why can’t sweets and fried foods takes weird? I really try not to eat either of those, but lately I’m not succeeding all the time. I’m also much more constipated than before, I can’t help but this is also a side effect.

We’ve had a lot of unexpected expenses lately. Plumbing issues, needing to replace the AC in the casita. I sure am glad we have an emergency fund, but it will push back being able to get the yard landscaped, and replacing doors and blinds. That makes me a little sad, but it won’t be put off forever, and we can still get some of it done. (crossing fingers)

I should close now, my head is ramping up and I’m almost finished with this Spravato treatment.

Hope all are good out there. I’m not getting email notification when most blogs post so I need to take the time to check on you all.

Hope you are having a spooky season.

Advertisement

Better day, kinda.

I had a better mental day today, physical kicked my but!

No flash backs, and was able to really sit down and talk with Stuart.

My allergies are out of control! It appears I’m now allergic to my cat. It’s so hard. I’m determined not to re-home him, but I have to find an antihistamine that works! The pharmacist told me about a prescription one, I’m going to ask my doctor.

If this doesn’t work I’ll see if I can find someone to bathe him, or shave him. Anything!!

Right now I’m spending most of my time in the casita (my studio I rarely use, but that’s a different story). I’m lucky I have somewhere to go, I have a much higher understanding and empathy for those I know with a cat allergy.

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

I’ve been having vertigo on and off all night. Waking up in the middle of the night with vertigo really sucks!

So I’m scared.

I got the latest COVID booster and my first shingles shot (I didn’t know it was a two shot vaccine… Ugh). My shingles shot side is already so sore I can barely use my arm. The other side isn’t bad at all, I feel it, but it’s minor.

Oh I did a little bit of art today, that was nice. Not finished, and I’m just covering some boxes with a mixture of torn newspaper background, with paint added in a decorative fashion. Some intuitive art.

I also sent a special complaint about the security guard. I strongly incouraged them to give their security personnel better training on how to deal with patients, especially disabled patients, with an emphasis on dealing with invisible disabilities.

I didn’t say it, but the way I worded it let them know I’m an advocate for myself and I’m not afraid to have his they deal with the ADA investigated.

I may be afraid, but I’m still strong, and brave.. even if I don’t always feel it.

#HAWMC Day 8 – I Know I Can!

Today is Day 8 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks- it’s all up to you.

i-know-i-can
image found here

I started writing this post and listed all these things under “I think I can” and realized that they all should be under “I KNOW I CAN”!  This post will list a lot of things that are a challenge, but I KNOW I can do it!!  It’s a pretty random list, things that came to mind as I was writing,and it’s in no particular order.

  • I KNOW I can finish this blogging challenge.  (having a chronic illness can make every commitment a challenge, but I know I can do it!)
  • I KNOW I can visit two friends in one day this weekend.  (this could prove to be a challenge.  I will be visiting them after riding in a car for 3  hours.  I hope all will go well.  I really want to see my friends, I don’t have many and I don’t get to see them often. I know I can do it!)
  • I KNOW I can help cook sometimes. (I actually helped hubby cook on Sunday!  Something I love to do, but has become too dangerous because of my disequilibrium and vertigo.  However, on good days, I can still help!)
  • I KNOW I can keep up my blog.  (there are times that I doubt I can keep this blog going.  When my health interferes it takes so much to keep writing, but I know it is then that I need to write the most.  I need to let others see me vulnerable.  There may be times that posts don’t come as often as I’d like, but I know I can keep it up!)
  • I KNOW I can be the best advocate for me. (there is no one who knows me as well as I do, therefore there is no one who can advocate for me as well as I can.  My healthcare team beware! 🙂
  • I KNOW I can have the courage to try new treatments.  (sometimes I feel I’m done, I just don’t want to try any more.  I know there is not cure.  I’m tired of trying.  But, I know I have the courage to keep trying.  I need to try.)
  • I KNOW I can go on vacation with my husband.  (We’ve been talking about going to visit family that lives close to 3000 miles away, I know I can fly and go on the trip.  Crossing all fingers and toes!)
  • I KNOW I can go shopping. (With my hubby or a good friend I know I can go shopping.  I just need my trusty walker and I should be good to go.  On a good day that is.)
  • I KNOW I can take a bath by myself.  (this really is an I THINK I can.  I may not be able to.  I have a lot of anxiety taking a bath or shower because of vertigo and overall disequilibrium.  I am better with a bath than a shower.  However, sometimes I still have vertigo start when I am in the bath and I need help, FAST.  So I think I can take a bath by myself.  That doesn’t mean I really can, so normally hubby helps me get in the tub and leaves me and I just yell if I need him.)
  • I KNOW I can have fun with my husband.  (we laugh together almost every day, not matter how sick I am.)
  • I KNOW I can be a good friend. (I think I’m a better friend now than I was before I got sick.)
  • I KNOW I can live with this pain. (sometimes I doubt this, but I know I can do it!  The  pain from the migraines and the degenerative disc can be overwhelming at times.)
  • I KNOW I can be an advocate for others living with chronic illnesses, especially those with Meniere’s Disease. (I’m just a little voice in a large pond, but I’ll use my little voice as much as I can.)
  • I KNOW I CAN……

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 7 – Starting Advocacy

Today is Day 7 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.

caring-hands

The start of my advocacy journey for Meniere’s Disease and other chronic illnesses is kind of a long story.  First I found out I am allergic to wheat and suspected to have celiac disease.  Here, let me ‘splain….I had been generally sick for a long time when I found out I’m allergic to wheat, so I stopped eating wheat.  I started to feel a whole lot better, but I was still getting sick sporadically, so I decided to stop eating gluten.  My doctor then suspected that I may have celiac disease.  I was given the blood test but tested negative, I was given it again and tested positive.  This provided no definitive results, so I would need a biopsy from my small intestines.  However, the only way for this test to work was for me to start eating gluten again for a month or two.  I asked what the treatment was if I was found to have celiac disease and it was a gluten free diet.  Well I was already eating that way, so I decided to just keep on a gluten free diet instead of having the test.  Maybe I’ll have it one day, but probably not.  The doctors are pretty sure I have it due to the last blood test, I don’t really care, I know I can’t eat gluten.

This was before there was a lot of knowledge about a gluten free life style and celiac disease, so I became an advocate.  I started a blog and worked hard to bring awareness.  I worked with local groups.  I was a taste tester for Whole Foods Gluten Free Bake House.  It was an exciting time for me, I felt like I was making a difference.  Then my Meniere’s Disease got so much worse.

When the Meniere’s Disease went bilateral, meaning I suddenly had it in both ears instead of one, I had to rethink my life.  (if you don’t know about Meniere’s Disease, and you’d like to, please see Meniere’s Disease-My Story at the top of the page.)  Once I saw my new doctor at Duke Medical Center I had renewed hope (more than I should have really).  I was going to focus on getting healthier.  I wanted to increase my exercise and start eating even healthier.  I decided to stop writing my gluten free blog and start a blog all about me getting as healthy as possible with Meniere’s Disease and (suspected) celiac disease.  This blog was called 365 Days to a Healthier Me.

I soon discovered I was not going to be able to focus as much on getting healthier as I was on simply getting through the day.  The vertigo was happening almost daily and I was losing my hearing rapidly.  I decided to start writing about my experiences with Meniere’s Disease (I stopped writing about a gluten free lifestyle by then) and this naturally morphed into advocacy.  I found others were out there who were struggling as I was and needed some support.  Soon I started talking about other illnesses I struggle with on a daily basis, such as chronic migraines and bipolar disorder.  I have found that people with chronic illnesses need a voice.   I hope I can add a little voice to a lot of other voices.

After the loss of my hearing and with continued struggles with vertigo I haven’t been able to advocate in person, but I continue to try to keep up the good fight via the internet.  Sometimes I’m not able to do as much as I’d like due to my illnesses, but I’ll keep trying.  That’s all we can do.  Keep trying.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  and don’t forget to check out Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

*All images on this site and the creation of Wendy Holcombe unless otherwise noted.