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?

 

Makes you wonder, “Who’s the Boss?”

“Kind of makes you wonder, who the boss is here, doesn’t it?” This was the last thing my neurologist said to my son in law as we left his office on Thursday.  You see, being on the MS drug Tysabri, requires me to perform three actions each year to remain on the drug.   I believe the three things I am required to do are CYA (cover your ass) for the doctors and drug company, though they present it as for my safety….shrug

A little bit of the back story here.  When Tysabri first came out on the market, it had to be recalled twice because the risks outweighed the potential benefits.  (it killed people)  Ok while it didn’t kill people itself, it caused some to develop PML (Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).) which did kill people.   Either way it had to go.

Back on the Market

I began the drug shortly after it was released the 3rd time.  (YAH sign me up?!?!?)  SMH, actually for me, the risks were nothing in comparison to the potential gains. I was going downhill fast.  If you would like to read about how/why I started Tysabri, the first post of the “series” can be found here.

When they released the drug for the 3rd time, doctors had to require patients to meet the following conditions each year to remain on the drug.  The first is that they have to have an MRI of their brain yearly to look for signs of PML.  The second is that they have to have blood tests to determine if they are positive or negative for the JC virus.  Finally, they have to see their neurologist at least once a year to be reminded of the risks, and that the longer you are on Tysabri, the more likely it is that you will develop PML.

Having completed the first two requirements this summer, meant that I needed to see my neuro.  Not an easy feat considering I still can’t drive and his office is 2 hours away in Chicago.  Thankfully, my son in law said he would take me and spend the day with me.  (I really am blessed)

Z arrived right on time to pick me up.  During the two hour drive to the city, we discussed (debated) the pros and cons of Technology.  I will write more about that another day though.  Basically, I agreed to let him tell me about some apps that may make things easier for me, if he agreed to let me play devils advocate about the potential risks.  I think we both learned somethings.

The wait to see my doc was short.  He came to the waiting area and said, “C’mon Grace follow me”.  He didn’t notice my boot until, he turned around to see how I was walking.  (nothing like a having the pressure of having someone judge your balance as you try to balance) smh  He asked, “What happened now?”.  I briefly told him, he shook his head, and we entered the exam room.  We all sat down, and he said, “I was surprised to see you on the schedule, I never see you unless something is really wrong.  What’s going on?”  I chuckled, “just doing the yearly thing.”

First we reviewed the MRI of my brain.  There were no real changes to report, other than a little bit of atrophy and brain shrinkage.  (this also happens as we age, and was nothing major)  I did tell him about the newer symptom of “spins”, but only that I wanted him to put it in my chart, nothing else at this time.  He asked if I wanted to check disease progression in my spine with MRI.  (most of my lesions ARE in my spine)  I declined.

Next were the JCV test results.  The results were indeterminate.  (not negative or positive, literally indeterminate)  ok?  NEXT?

Doc: “You don’t want to talk about switching medications?”

Grace: Nope!  Thanks though

Doc:  “you do know that there is a new drug out  called OCEVERUS?”

Grace: Yep!

He began to shake his head again.  So I pulled the pamphlet out of my purse, and said listen Doc…let me be honest with you…. “I’m aware of the drug and the benefit of only having to have an infusion 2x a year, however at this time I’m just watching”.  I continued with:

  1.  I’ve done my stint as a guinea pig in the clinical trials for Botox
  2. It’s still too new, and carries the same risks as Tysabri.
  3. Basically the amount of time I “lose” getting this drug is the same amount I lose getting Tysabri ( Oceverus 2x a year 8 hrs each time vs.  Tysabri 12-13 x times a year 2 hours at a time)  Besides, I have a port in my chest that has to be flushed every thirty days regardless of whether or not it’s used, so it would be the same
  4. I also explained that I used my Tysabri infusion to meet my Medicaid spendown each month (but more on that another time)

He asked if the surgeon was going to send me to physical therapy after the boot came off.  I think I surprised him when I not only agreed to use a wheeled walker, (if Medicare will cover it of course) but that I would also like to go the PT, not only to aid my foot in healing, but to help with my balance and gait issues.  I asked HIM to write the prescription for both (pt and the walker) knowing that the likeliness of insurance covering both would be increased if they were given more reasons to approve it, (gait, balance issues, strengthening etc) than just “to aid in post op recovery”.  Isn’t it sad that it’s all a “game”?  Fortunately? for me I’ve been playing a long time.  SMH  We shall see.

Before I left, I did ask him for his opinion on the  various “diets” that are out there and how they may affect MS.  I know that I am not easy to “work with” sometimes, but that doesn’t mean I don’t want to do everything I can to fight this monster.  I just don’t believe that taking more drugs is the way to do it.

The diets I mentioned were the Wahl’s protocol, Paleo, and the Ketogenic diet.  I am not sure which if any I will follow, but I am in the process of learning about all three.  I have to admit that even a simple reduction in carbs and the addition of colored veggies to my to my normal SEE FOOD (see food and eat it) diet would be a good place to start.

Before we got up to leave, the doctor asked me if I would be willing to talk to other patients with MS.  I told him I do, all the time.  He was inquiring in more of a professional  capacity to which I responded that I was happy to  anytime, if he wanted to give someone my name and number, but never representing the hospital or his office.  (My use of the F bombs would disqualify me from that position.)

In closing,

The answer to the question of who is the boss…. I am!

It’s my body, my right, and my choice.

I am very fortunate to have a doctor that understands my feeling on this.  He also knows that while I do take some, I hate taking medications of any kind, and am always very reluctant to call, so when I do, he gives me priority.  I hope that if you are dealing with MS, or another chronic illness that you have found a doctor that is willing listen to and respects your opinions as well.

*The featured image is the inside of my daughter’s Beast for work….but doesn’t it make you wonder who is in control, or responsible?

FREE SOS feature on your phone

Recently, I had to start doing research on devices that would allow the user to activate a panic or sos button that would notify friends or family that they needed assistance.  While I still have not found the exact device to suit my needs, I did stumble across some very useful information about a FREE feature included on ALL cell phones  regardless of model or provider, without having to download an app or pay for a service.

If you are interested in hearing more, please keep reading!!!

Let me start by telling you what this feature does, or how it works after you do an initial setup and then I will post screenshots on how I set it up on my phone.

Once you have completed the initial setup, if you need to send an SOS message, you simply click your power button 3 times quickly.  Doing so,  enables the front and back cameras on your phone to take a picture.  It also makes a 5 second audio recording, and sends all of this information including your GPS coordinates to a pre-selected contact.

Too good to be true?  I thought so too.  So of course I had to test it out numerous times to try to find a flaw.  I’m happy to say that I couldn’t find any.

Each time I tested this, either myself or my contact received the message within 30 seconds.  The camera does not use the flash, so their is no indication to an outside party that you have clicked an alert.  The GPS coordinates were accurate to within 200 feet.

The steps I used to set this up on my phone are as follows:

  1. Go under your settings tab
  2. scroll down to privacy and emergency
  3. turn on send sos messages
  4. select a contact
  5. on the final screen you have the option to attach pictures and/or audio

From what I can tell, this feature is available on all makes of phones regardless of your service provider.  While each person I have talked to about this, has been able to set this up on their phone, FOR FREE, the steps were slightly different than the ones I used.  If you are interested, Google… ” how to set up sos messaging on your phone”.

Let me know if you tried this, and any opinions or concerns you might have that I might not have thought of.  I am very curious to know if it also works in other countries besides the US.

ADL and Toe Mice

So Thursday’s post op visit with the surgeon didn’t quite go as expected.  That isn’t to say I am disappointed with the results, it’s just that he said something  I NEVER expected to hear….. EVER….

My friend Jeri picked me up and we, well she, drove to the doctor.  My appointment was at 2:45, we where shown to a room at 3:45.  (not bad as far as orthopedic visits go)  I climb onto the table and the nurse begins asking me what my pain levels are.  This is a trick question I am sure, because if I don’t walk on it and keep it elevated, my pain is pretty low on the scale.  After I have been walking around a bit, or letting my foot hang down too long it climbs quickly.  I told the truth…. kind of… I left out the part that I had been standing alot.

Do you want more pain pills?

I quickly answered, “NO!!!!!”, and pulled out the bottle of remaining pills that I had asking if she wanted them back.  I can not stress enough, that I really don’t like the way the make me feel ( mood swings, maniac, nauseated etc.)  and I NEED to be able to feel the pain to prevent me from overdoing things.  I agreed to take Tylenol over the counter as needed.  (in my opinion, advil is better at pain relief, but since I am a bleeder and it’s a blood thinner, I will stay away for now)

I took off the boot, the nurse removed the dressing, I took a quick picture, and then looked away.  The doctor, and a student came in shortly after.  As he pulled up a chair beside me to examine the stitches, he asked, “Did your father tell you what we found?”… I replied “um no, not really, he didn’t tell me that you FOUND anything, but what he did tell me was…… “So the doctor took off your big toe, reamed holes in your foot and then your toe, they put in a stud and then screwed your big toe back on”.”  The doctor looked at the medical student and then back at me.  He said, well “Yeah, that’s basically what we did”.

After seeing the horrified look on my face, he said, “No seriously though, let me tell you what we found.”  “When I made the incision, two toe mice immediately popped out.”

ANOTHER Horrified look

“Toe Mites?”, I asked.

“No Toe Mice” he responded. and then continued,  “It’s a medical term that we use to describe what we found.”

I really wish I had a picture of my face, because I can’t find the words to describe all of the things I was feeling at this point.

“Cmon doc, PLEASE tell me the truth, I am gullible as hell and completely disgusted that I have mice?!?!?!? My next step is to cry and I promise you don’t want that”.

He put his hand on my shoulder and said, “let me explain.”  “First of all young lady, I can not believe that you were able to walk at all with the amount of damage in your foot.  You had absolutely zero cartilage in your first metatarsal joint.”  He pounded his fists together to demonstrate the bones hitting each other as I walked.  He went on to explain that because I continued walking the bones starting splitting and breaking off into fragments (or mice).  This had been happening for so long that the bones had turned into smooth marbles and kept chipping away more bone.  The combination of those conditions, my unsteady gait, and whatever I was doing to compensate in my walking caused another break.

WOW that’s a lot of information.  Crazy as hell too, but a lot to absorb.

20180913_154439

As I tried to process what he was saying, he re-wrapped my foot in gauze and an ace wrap before sticking it back in the boot.  While he says the incision is healing nicely, I am stuck with the stitches for another week still, but I am released to begin ADL in moderation.

ADL- Activities of Daily Living

Should be simple enough right? But for me it wasn’t….please take a minute to watch this video to understand why, especially if you don’t know me very well.

So this is what Jeri and I were doing BEFORE we saw the doctor.  I get that I can’t use my right foot, so I thought we could just throw the ball and knock the beehive down.  I didn’t realize that to get any “air” with the ball I would have to push off with……you guessed it, My foot….holy mother of……………………………

I was ready to give up, but Jeri was having fun, so I played video  ographer…..

Anyway, I’m not sure that this is considered an activity of daily living, but since I do dumb shit like this all the time, I asked for further clarification.  More specifically….

I am allowed to….

1. stand/or walk for no more than 5 minutes at a time.  to be followed by a minimum of 1/2 hour break  AND ONLY WITH THE BOOT ON

2. Take the boot off except for when walking or sleeping

3. I can resume sexual activities, so long as my toes don’t curl during orgasm (yes this was discussed)

I am not allowed to

  • Curl my toes
  • get the stitches wet
  • put any weight on my foot without the boot
  • specifically throw a ball at a bee hive
  • mow my lawn
  • go grocery shopping without a scooter
  • drive 😦

I will call that progress……though not as much as I hoped

 

 

 

Another surgery?!?!?

Hopefully the last one this year…..smh

I haven’t seen the surgeon to follow up about my foot surgery yet, so I’m not sure that I’m “done” there yet, but I FINALLY have surgery scheduled for Botox in my bladder on Friday.

The last time I had this surgery was February 9th of this year, and since it only helps relieve symptoms for about 4 months, let’s say I am WAY OVERDUE.

If you’re interested in reading more, the link to that post is here….

You’re getting Botox where?

Both the surgery and “recovery” for this one will be a piece of cake, to be honest the scheduling of it is the most difficult part.  I also hope that doctors are able to come up with some other “treatment” soon because I suspect my body will develop an intolerance or tolerance for it.  (you know when a treatment just stops working?)  and having to carry or wear a bag of pee just plain sucks.  (yes even though I have officially given it a name, it still sucks).  So YAH surgery?!??!

While I’ve got you here though, (I hope you’re still reading).  Can I tell you about my foot?  AGAIN?!?!?

First the “technical stuff”

Today marks one week post op.  I see the surgeon again on Thursday.  I have FINALLY been able to put  weight on it (with the Boot on)  AND can tolerate the pain without pills!

even upI have even been able to walk to the bathroom as long as I have the “even up” on my other shoe to help realign me, stand up straight?  I’m not sure how to explain it, but it makes my shoulders straight when standing and takes pressure off my right hip.  Win win

Since I can get to the bathroom easier now, I was able to take the foley out.  First time I am ever grateful for having such a small house.  (10 steps in one direction from my computer to the bathroom and 15 steps to my bedroom in the other direction).

I no longer have to stay in bed

Keeping my foot elevated is still important though.  I was even able to get the wheelchair out of my house by myself.  I went for a “different” kind of walk the other day, more of a roll?  While I wasn’t able to take my “normal” walk, I did make it around the entire block in the wheelchair, using my arms for a portion and my left leg for the other.  It felt great to be moving again.  I know it will still be a long time before I am able to really walk again, it was freeing to know that I can “get out” by myself…and it’s a hell of a workout to help shed the pounds from all the ice cream Jeri delivered.

Thing One and Thing Two

Although Thing 2 and her boyfriend have been helping tremendously, (Ice pack and coffee deliveries right to my bed)  it’s refreshing to be able to do it myself.  Thing 1 and her husband stopped by to check in too.  She is 5 months now and the baby bump is really there now!!!!!!  As I have said before, I’m only a LITTLE excited!!!!!!   Yah grandbabies!!!!!!

granny imageWhile having so much time to ponder, what I would like to be called,  I think I am going to hope for Mammy,  but I will write more about that later.  I do know for a fact that GRANNY just isn’t going to cut it.  I can’t hear the name without thinking of Granny from the Beverly Hillbillies….. While I do have her spunk, it’s just NOT gonna happen.

Several of you have commented the you are sorry that I am going through so much, and I really appreciate it, but please don’t feel sorry.  I have amazing friends (you included) and family, and have never felt so loved.  Even Einstein has delivered food and….shhhh cigarettes :(.  I will pick up that battle again, just not today.

Thank you all for reading and commenting.  I am sorry that I have missed so much going on in your lives, I will remedy that today.