Healthy resources for chronic illnesses

Last week I shared, my list of Not your Typical Blogger Awards recommendations.  I mentioned in the post that I also had recommendations for chronic illness bloggers that were inspirational and motivating that I would share if requested.

As I continued to reread posts from February of last year, I realized that I had completely forgotten that not only did I actually write a little about MS in February, but I also made a video about being newly diagnosed> I was also fortunate enough to have some of those very same inspirational and motivational bloggers do guest posts on my blog.  Their names and links to their blogs can be found here.

I would like to add a few of the chronic illness bloggers that I have also begun following since that post was written that I also find very motivating and helpful.

First is Terri, from Reclaiming Hope.   Terri lives with Fibromyalgia, and offers great tips on total wellness, sharing advice on complete wellness encompassing emotional, social, spiritual, occupational, intellectual, financial, and physical aspects.  Whether or not, you suffer from a chronic illiness, I think you may find a lot to gain by visiting her site.

Next up is Heather and Dizzy from Dinosaurs, Donkeys, and MS.  Heather was diagnosed with MS a only a couple of years ago, but you would think she had been living with MS for a long time, based on the amount of information she shares.  Heather shares information about the OMS program, many exercising techniques, and relaxation techniques through her stories with her Donkey Dizzy.  She has also begun a podcast featuring two herself and two other MS bloggers from the UK.  If you have a minute, potter over  to her page, again you will not be disappointed!

Also from the UK is Caz, the author of Invisibly Me.  For a quick glimpse at her personality, check out her post, This and That.  As with most invisible illnesses, you wouldn’t know that anything is “wrong” with Caz, by looking at her, but she takes this one step further by sharing tips on how she continues to fight and rise above the trials she faces.  I especially like her post, What my invisible illness(es) have taught me. If you have another moment, (while you are in the UK :P) take a few steps over to her page.  About once a month she will share frugal finds for things she has found that help beat the heat and work on relaxation.

While I’m taking you around the world (well yah the internet is) I’d like to take a moment to visit Vancouver and talk about Amanda from Walk a Myelin* My shoes Not only does Amanda talk about the realities of living with Chronic Illness on her blog, but she is in the process of writing a book, and often talks about the other side ( caregivers and support people for those of us living with an invisible or chronic illness). To keep in line with the subject I wrote about earlier with being newly diagnosed, I would like to share this post written by Amanda as a place to start.

It is so easy to fall in with “the bad crowd” of people living with chronic illness.  By “bad crowd”, I don’t mean bad people, I mean people that spend more time succumbing to  their diagnosis and limitations than they do focusing on the positives in their life or are resigned to let the disease consume them.  (I think we may all go there from time to time.) Personally, I find it so much more helpful to spend time with people that while maybe struggling, continue to fight each day.

I hope you can take some time to visit the above mentioned websites, and that you find them as helpful as I do!

I have showed you mine, will you show me yours?

Do you have any websites or bloggers that you follow that share tips for dealing with chronic illness?  I would love to hear your thoughts

Maybe you can share some recommendations that you have?

 

I’m in a Hurry (and don’t know why)

I was talking with a friend the other day, and commented that I didn’t know how I had “made it” to 45.  She responded saying, “no shit, I don’t know how YOU did it either”.  (note she didn’t say WE, she said ME) That’s kind of sad don’t you think?  I mean, I have never fought in a war, saved someone from a burning building, or performed any other heroic act.  Yet, for most of my life I have lived in a constant state of fight or flight.  I have always raced to the next bullet point.  There was always something else that NEEDED to be done.

Have you ever heard the song, I’m in a Hurry by Alabama?  I swear they wrote it for me.

I’m tired.  I really am tired.

The thing is, I’m not done.  Far from it.  But I am learning that if I continue at the speed I have been going my whole life, I am going to burn out….quickly.

I have pretty much lived my life by this quote,

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”

Hunter S. Thompson,

While I do still believe this, maybe I don’t have to be in such a hurry to get there?

Being pretty immobile for the last month, while waiting for my foot to heal, has been a blessing in disguise. As I said before, Patience has never been my strong suit, but for my foot to heal successfully I needed to practice some.  I have spent my “downtime” looking for OTHER ways I could heal and become stronger as well.

On the physical side I am going to start with physical therapy.  That’s it.  No big get out there and  walk a mile a day again.  Baby steps.

I have also been reading and researching various diet or lifestyle changes.  Although I do hope to lose weight, my goal is more to reduce the inflammation in my body to see if I can reduce the number of medications I take.

On the Mental Side, not only did I reread all my posts from this last year but, I also took the time to relive the excitement of my daughter’s wedding.  I allowed myself time to dream about all the things I want to do with my future grandchildren.  Most importantly, though I finally allowed myself to grieve all of the tragedies of last year.  This isn’t to say I am done grieving, more that I have slowed down enough to let myself feel the pain, I had been running from.

It’s kind of cool that even though I thought recovery time from surgery was going to be unbearable and a bunch of lost time I would have to make up for, instead it forced me to pace myself, and I was still very productive.

I’m a work in progress! 🙂

S L O W L Y

but getting stronger every day!

 

 

 

Conflicting Emotions

Have you ever felt emotions that were complete polar opposites at the exact same time?

Last week, I wrote  One Step forward, two steps back.   I saw the surgeon this morning.  I should be happy that he was able to see me so quickly, and that they will be getting me in for surgery soonish.  I AM happy…kind of.

BUT, I am also pissed off.  I’m mad at the doctor who dismissed my foot pain and swelling as gout, but I’m even more upset with myself for letting him.  I should have fought harder for myself.  Three weeks have passed since my original visit to the doctor,. Three weeks before I couldn’t handle the pain anymore, and went to immediate care.  THREE weeks more damage to my foot because I continued to walk on it.  and NOW surgery.

The doctor is trying to get me in for surgery this week, but I have Medicare for insurance, and they don’t do anything quickly, so maybe not until next week.  I suppose I am to blame for this too, since I refuse to take pain meds, it can’t hurt that bad??!?!?!??!   I don’t refuse pain meds because I have a high pain tolerance, I refuse them because even one norco binds me up for at least a week and the mood swings are scary…. In hindsight, I will ask for them anyway.

While on the subject of being angry.  I am also mad that I bought another pack of cigarettes.  No one forced me to do that, and I know that recovering from surgery will take longer if I continue to smoke, yet I did it anyway……I have thrown the pack out 3x only to dig it back out of the trash….yes disgusting I know……

But did I mention yah surgery?…..smh

One step forward, two steps back

Do you ever feel like for every step you take forward, you take two backwards?  That is the best I can say to describe the events happening in my life right now.  I did think of using a hurricane or other storm as an example, but while those things ONLY cause disaster the things happening in my life are only causing me grief, and I haven’t given up just yet.  So what’s been happening here….

Instead of re-writing, or copying and pasting things from previous posts, I am going to add links to my previous posts if you want the back story.

Walking a minimum of 4000 steps a day

On July 13th, in the post let’s get moving.  I talked about making it a point to walk everyday to increase my endurance, strength, and stamina, even though I am afraid to walk alone and have had some pretty bad experiences.  The positives are that I have finally reached my goal of walking for a full mile at a time, and have had some days that I have reached more than 8000 steps (not at one time though).  I was doing good with the whole weight loss thing, ( I haven’t written about that yet), until Birthday week hit….yah cake?  My neighbor (who works nights) even started setting an alarm to wake up at 8 am and walk with me everyday.  I bought a rollator walker to help with my balance, which I used in the evenings to try to get a few more steps in.

One day after getting lots of steps in, I came home, took off my shoe and saw this…foot oww

Awww, shit. I had broken my foot a couple years ago, and had attributed the pain to “an old sports injury”.  The fact that it was so discolored told me that I couldn’t ignore it any longer.  I reluctantly called the podiatrist I had been referred to in the past.  I don’t want to be “one of those people” that claim that doctors treat patients without insurance differently, but after the office visit I have to be.

The doctor physically examined my foot, said it felt warm to the touch and was obviously very inflamed, but since I hadn’t suffered an actual injury “this time” he was going to call it GOUT.

reallyHe sent me to the lab for a uric acid test, gave me a prescription for indomethacin, and told me to keep ice on it for a a couple days, then to start doing stretches for it.

NO Xrays?!?!?!?  That’s it?!?!?!  Not even an order to stay off of it…..

I went to the lab and had the uric acid test done, which came back as negative for gout.  Ya think?!?!  I did not take the prescription because NSAIDS, cause my blood pressure to go through the roof, and make me sick to my stomach.  I instead have been living on advil and tylenol.  (also not good, but the pain got to be pretty bad even at rest).

Yesterday, I broke down and went to an immediate care center.  The first step while there was to do XRAYS.

GUESS WHAT

It’s broken AGAIN!!!!  Is anyone really surprised?

So now I am back in a boot, yah that it’s a short boot this time, but a boot nonetheless.  I have an appointment Monday to see a surgeon. If I end up spending any real time in the boot again, I will be ordering an “Even Up” from Amazon this time.

I don’t have the time or the patience to figure out why the link to amazon isn’t working, but if you want to see what I am talking about please click the link below or google “even up”.

<a href=”https://www.amazon.com/Procare-EvenUp-Shoe-Balancer-Small/dp/B00YBP7N9Q/ref=as_li_ss_il?ie=UTF8&qid=1534367535&sr=8-1-spons&keywords=even+up+womens+shoe+balancer+for+women&th=1&linkCode=li2&tag=gracefullnot-20&linkId=b708949e806607bddd4b94e1c2521092&language=en_US&#8221; target=”_blank”><img border=”0″ src=”//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B00YBP7N9Q&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=gracefullnot-20&language=en_US” ></a><img src=”https://ir-na.amazon-adsystem.com/e/ir?t=gracefullnot-20&language=en_US&l=li2&o=1&a=B00YBP7N9Q&#8221; width=”1″ height=”1″ border=”0″ alt=”” style=”border:none !important; margin:0px !important;” />

Basically, it’s something you attach to your other shoe to help not cause further injury by walking “crooked” or unevenly when you are stuck in a cast. IMO well worth the $20.00.

When I began writing today, I had envisioned telling you about all the fun ( said very sarcastically) I had trying to switch to self hosted, and updating you on Me and my shadow, but this post is pretty lengthy as it is so I will write separate posts….later.

It’s good to be Back…. I have missed interacting with everyone and feel like I have alot of catching up to do.

Getting a blood patch for CSF leak

This is the last part of A very long walk.

For those of you who have been reading along and commenting…there is a happy ending and an even better future

The PLAN was that my dad would drive me in my van with the seat laid flat, and my mom would follow in their car. Decatur Memorial advised my local hospital that I would be arriving later that day and that I needed a BLOOD PATCH.  They even printed all my records for me to take with me.  Yah should be pretty simple right?!?

joker-laughing-gif-3

NOT EVEN A LITTLE BIT!!!!!!!

While we did make pretty good time getting there, ( a little over 4 hours) the hospital could not just admit me because I had declined the ambulance transport, instead they tried to seat me in the waiting room.

When you go to the Emergency Room, they take patients in the order of the severity of their injuries, I get that… Unfortunately a “headache” doesn’t rank very high on the list.

I don’t know if you have ever had the kind of headache that comes with a spinal fluid leak, but I promise you, it’s enough to make you think you are losing your mind.  I still can’t quite explain it either.

Maybe kind of like the spins, after a night of too much drinking combined with someone smashing your head between two symbols while trying to speak to you in 3 different languages at the same time?

I really think I must have looked like I was losing my mind because I literally laid on the floor in the emergency room to try to stay horizontal.  I’m really not a germaphob, but even I would draw the line at that normally.

I was frustrated, my parents were frustrated why couldn’t you just do this blood patch thing?!?!?  I don’t remember all of the details that followed other than, I left and went home.  Well my dad drove me home and they both stayed at my house with me.

I think some of the difficulty was that it was a holiday weekend.  Another issue was that they were not sure where I was leaking cerebral spinal fluid from, and doubted the effectiveness of a blood patch if they didn’t find the right site.

Once the weekend was over, my mother was able to contact the neurosurgeon that had performed my thoracic laminectomy from a few years prior, and he said to bring me right into his office and he would do the blood patch immediately.

So what is a blood patch?

An epidural blood patch is an injection of your blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space.

This is a great link explaining it in more detail.  What is a blood patch?

I remember being terrified to stand up after the procedure.  I had the doctor on one side of me and the nurse on the other, and I slowly stood up….. Nothing happened!!!!!  My head DID NOT explode, there was no projectile vomiting!!!  I was still sensitive to the light, but I could handle that.  OMG it worked!!!! and almost immediately too!

After going home, I still continued to chug coffee and laid in bed for the next couple of days….just to be sure.

For the next month or so, I would continue to get migraine like headaches, but they were not positional and could be managed with medication.

While I thankfully no longer suffer from those headaches, I plagued myself with the fear of walking alone.  When I walk in my house, I grab everything, walls, furniture, people.  When I walk outside, I always have someone with me.  What I did was to make myself a prisoner to my fear.

Prisoner no more

If you have been reading my blog posts for the last month, you know that I have been in a dark place both emotionally and physically.  I don’t want to feel that way anymore!

So I started to force myself to “hit the road” again…. God let’s hope not… I mean walking again.