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Archive for April, 2016

The Day After

Wow! It is the day after the Ketamine Infusion! The process officially started with the knockout drug in the IV at about 8:34 am! The nurses smiled and said that they would keep me asleep during the entire treatment. 

I awoke very groggy about 7pm with Hubby and son in the room. Managed to get dressed and wheeled to the car. I remember my Hubby waking me up…asking something about Chicken Fries…then being told walk up and eat….somehow I ate the chicken….

I remember my Hubby trying help me get a t-shirt on….then nothing until 6:33am this morning!!

I am still very groggy….out of it. As I get more wits about me I will share any difference that I feel in my body. 

To List or Not To List

It has been interesting along my path of chronic illnesses/conditions to interact with others like me. Invariably we exchange tips…tricks…hints….hoping to help prevent some of the frustrations with which we find ourselves…the brain fog…the extreme fatigue…plus all the pain…burning…etc…

One Fibro friend swears by sticky notes.  She uses them at work…at home…in the car….they really help her to remember where she left off on a project…keep her on track with what to get at the grocery store….help to remind her to get her purse before leaving in the car…it is a system that has greatly helped improve her confidence.

Another one that several people have suggested are making lists.  One friend likes to make a list at the beginning of the week of everything she would like to accomplish.  It is not hard and fast…it is what she would like to attain. Throughout the week she marks off what she is able to accomplish (it could be things like vacuum, grocery shopping, folding laundry, read a book, walk around the block each day…etc.) This has increased her confidence in that she can visually see what she has accomplished in turn increasing her confidence as well.

Another friend of mine uses lists in a different manner.  She keeps a notepad in the kitchen where she can write down any needed grocery item. She has also opted to make a short list of goals for the week which she posts on her frig for motivation.

I know prior to quitting my job I was using the sticky notes….I would have to jot down or mark where I was….the smallest interruption would disorient me SO much! LOL

The idea of lists do not work for me. I have worked with people in the past that had to have lists for everything….I could understand this type of organization and could see how it would indeed be helpful.  After all, the ways in which lists can be used is so versatile.

I attempted one time…years ago….however, I found that it made my “Type A” personality flare! I could not stop until everything on the list was done! To this day, just the idea of making a list makes my head spin! I can feel myself almost instantly wanting to struggle…a struggle that I do not have any energy to fight.

I have been able to finally adapt a little of the “list” concept….by using the task and the note apps on my cell phone…I have been able to trick my brain!  I have successfully made short notes of issues to bring up with my doctor (we all know how quickly we forget a thought)….and when I remember…I can jot a few needed items on the tasks for the grocery store when I go with my husband….

One thing I have found though….in regards to grocery shopping….I will verbally relay a few items we need (say eggs, soy milk, rice milk…)  Then my brain just stalls….I cannot think of the words….so when my hubby is pushing me in my wheel chair, I now watch for the visual clues….I see the canned tomatoes…and can say….”Hey, we need some tomatoes”….

It is reassuring to know that somewhere….hidden…in my now scattered brain…..is the me that was so detailed….that had no reason to make a grocery list because it was all on the tip of my tongue….now it is just in the pictures!  (Thankfully…my hubby is patient….and he has learned that I just need to go up and down the aisles for my cues!)

A Son’s Worry

As I wrote in my previous blog, my Ketamine Infusion had to be rescheduled due to the change of a hospital’s scheduling.

Our son was excited about this treatment…he was hoping that I would receive some type of relief….so that his worries would be calmed…he was excited about the opportunity to go fishing with his Dad while I would be undergoing the infusion…

After his track meet, I told him that my infusion had to be changed.  That we would be traveling farther for the treatment than planned…that it would be a week from today…next Friday.  I reassured him that there would be opportunity to fish with his Dad at this new location….

He just looked at me…with worry in his eyes…”But, Mom….you have to wait a WHOLE other week”!

I did my best to smile and reassure him…yet…he can see the toll that the stress of the insurance/rescheduling…as well as the trip to his track meet have taken on me.

It tears my heart to see his worry….to hear him voice his concern….knowing that all I can do his give him hugs….to reassure him that although I do not feel good….that I do hurt….I am “okay”…

It is so stressful for our kids to see us hurting…to know that they can’t do anything….that is they can’t help fix the problem…

We can just do our best…to take time…a simple game…having them help with preparing their favorite meal…

And…trying to give them the chance to be a kid….reassuring them it is okay to be out of our sight for a while…to go and ride their bike….play with friends…

A Tranquil Thought…

flower-blooms

As I sit in my recliner…sipping hot water…my body further overwhelmed….reacting to the stress and the joy of yesterday….

My Ketamine Infusion that was supposed to happen today was changed due to the hospital changing its infusion scheduling….the closest hospital will now only due the procedure on Monday’s….I need to have it done on a Friday….my only choice is a hospital 1 1/2 hours away…

While trying to get this change of hospitals set up….I find out “insurance won’t cover”….I then call my insurance company….I know…you can feel the anxiety…the stress!  How many times have each of us had to contact insurance…to have to fight for a needed procedure/treatment/medication….oftentimes having to enlist the assistance of our trusted Doctor(s)….

All this happening on the day of a Track Meet for our son!  I am determined to not miss one of his track meets!  So…with the stress all ready wreaking havoc on my body we are off to his Track Meet!

Just before we got out of the car….I receive another call from my pain specialist’s office. All is working itself out! I will receive a call from the scheduler for the other hospital first part of next week.  My Ketamine Infusion will now be next Friday. All will be processed through insurance…

As my body experienced spasms, burning, numbness, tingling, pins and needles…I had the wonderful distraction of watching our son participate in the long jump…the 400…and the 800…

Today….brings the flaring of my IBS…along with even more Fibro symptoms…..

At least I can close my eyes and watch images of our son…doing his best…enjoying his first Track Season!

Thoughts

I found myself missing you SO much today Sis!  I want nothing more than to speak with you…to tell you of my latest adventure….to speak with you about my fears….my anxiety about my upcoming treatment…

In my heart….I know you ARE with me…you ARE with us…

I was so excited to have the opportunity to shoot my first turkey today!  My first thought was to pick up the phone and send you a text….okay…I really wanted to just pick up the phone and call you!  Yet…I know that your phone is full…no more messages can be left…

We miss you terribly…

Life says that we must “move on”….

My heart says “NO WAY”!!…

Reality?!?!?  I as so many of us…will continue to push ahead….

I will NOT “move on”….I choose to “move forward”…..

In “moving forward”….I choose to bring YOU with me….I open myself to your presence…feeling you with me….

I SO miss you, Sis…beyond what words describe…especially with my “Fibro Brain!”  You were my connection to our family…YOU were my link….I cannot describe the special connection….

My mind races back to the toddler who would share my bed when we went to Grandpa & Grandma’s….I feel you…just as then….curled up…and pressing against my back…as if you could not get close enough….

I now long for those days….I want to have you that close again…

Miss you….now…and forever….

Love you…always….Forever!

IBS + Fibromyalgia/Polyarthralgia +++

As we all know, we are not dealing with only ONE condition…..those of us with Fibromyalgia are dealing with any number of other conditions….

My biggest tormenter….in addition to everything else that I am and have dealt with….is IBS!  Primarily IBS-D!  (Gross as it is…it is one of the reasons I am SO thankful that I have a permanent colostomy!  It buys me time!  I do not have to rush to the restroom as fast…)

I was able to see a great nutritionist several years ago who placed me on a Low FODMAPs diet.  The food journaling….the extreme start of the strict diet….was definitely worth it!  Through the years I have been able to learn how my “gut” reacts to food….to seasonings….to additives…etc.  I have learned what to completely avoid….what I can tolerate….what is totally safe….

However, the Fibromyalgia/Polyarthralgia/Chronic Pain Disorder completely override all this careful, proven planning!  The stress that the body undergoes while dealing with our myriad of symptoms….triggers my IBS-D in such a nasty…horrific way!

No longer is it a simple notion of knowing I accidentally ingested a touch of garlic in the darn salad dressing!  It is now….”out of the blue”…..those tell-tell cramps….those gut wrenching knots….that overwhelming “sick to my stomach” feeling…..the horrific bloating….not to mention the persistent diarrhea…..followed by the absurdly tired/sore tummy muscles!!

The IBS flares require total, complete rest…..which of course makes it difficult to do the stretching I need to do for my Fibromyalgia, etc…..

Thus….the most vicious cycle!

A “Fringe” Treatment in the Works

I had my follow up appointment with the pain specialist yesterday.  In preparation for this appointment, my husband and I did our research on some of the “fringe” or “optional” treatments for Fibromyalgia/Polyarthralgia/Chronic Pain Disorder since I cannot tolerate any of the traditional treatments.

The initial part of the appointment was the pain specialist listening to my concerns….listening to my husband’s comments/concerns….then earnest discussion began about the next best option to try.

I again…was SO impressed by the fact that this Doctor was intently listening….that he really had been giving serious thought to my case….all which was clearly evident during the appointment.

We determined that the best next course of action for me is to try Ketamine Infusion Therapy.  His office is currently reviewing with my insurance and working on scheduling the appointment.  I should hear from them by the end of the week.

The other point that impressed me was that he too thought that I should be able to see the Functional Medicine Specialist sooner than mid-July.  He and his office are going to follow up on that as well…to see if they can help to influence an earlier appointment.  I so appreciate their attempts to assist on that front as well!

So I find myself again….slightly….excited…..knowing that there is something soon…that we will try!  It will be interesting to see how my body responds to this infusion therapy!

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