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Four Years, Recovery, Tarlov Cysts: pg2

This is part two of my Four Year Recovery posts after the Tarlov Cyst surgery.  I repeated the first paragraph as an intro for you.  This one will cover more of my physical arena.

I guess, since I skipped a three-year follow-up, I should do one this anniversary.  As you read this post, and the next, might I suggest you read the pages in the top menu.  There are several pages under the drop-down tags of  ‟Journey”, ‟Recovery” and ‟About Me”.   These will answer any questions you might have about ‘what the heck I am talking about’, as you peruse these two pages on my four-year recovery.  Also, I will link other posts from the archives that can keep this from becoming a book.  [ Why am I doing this?  and   My Journey to get you started.  The first post linked to this one is: Thoughts on Four Years and Recovery, Page 1]

To my personal recovery.

As a recap, let me tell you that I was hoping for just a 50% reduction in pain.  I wanted to be able to drive and not lose feeling in my feet, or for my legs to not respond to me.  I wanted to sit properly on my bum for longer than a few seconds.  I wanted to sleep, even sleep on my belly.  I wanted to not feel like I had brimstone in my rear.  I wanted to get rid of the “funny bone” feeling on my tail bone.   [ Road to Recovery ]

Did any of that happen? 

Hallelujah! yes!  After my surgery, and coming home 10 days later, I had reached a level of pain reduction that gave me hope.  I no longer wondered if I needed taken to a field and shot.  I felt human again.  By nine months I was sitting up for five minutes and so happy.  I rarely had that funny-bone feeling.  The brimstone was still there when I sat, but much more tolerable.  And now, at four years, here is what is better and what is not.  [ A post you might find interesting is: Physical Pain Before and After ]

Sitting is only 20 minutes – if I must sit properly.  Sitting in a car continues to be the pits.  I can last long enough to get to the grocery store.  Some days are worse than others and the level of discomfort is dependent on what I did the day before.  Yes, I will still drive myself to the mall which is a ‘good’ 30 minutes away, but I have been known to make a pit stop to just stand or sit and do stretches before I get out of the SUV.  The feeling of sitting on rocks is never gone.  I just have accepted it.  That feeling is not as severe as before, but not completely gone.  I bought a neck pillow that I use as a tush cushion and it might just go into a restaurant.  I refuse to sit in a seat that has no cushion.  Just beat me, that would be less painful than a hard piece of wood to sit on.  [ And you know I would have a post dedicated to “sitting”:  Sitting, Before and After ]

A question that a lot of women ask is, “Do I wear jeans”?  If you catch me in them don’t expect me to sit.  Just a car ride in them will make me a witch.  I do wear them a size too large.  That double seam is agony.  I can wear slacks for a few hours, but you bet when I get home, they will be off within minutes.   I still love those granny panties.  I even wrote a post on them, for heaven’s-sake!  [#ChronicallyIllAndThankful, Day 15High heels?  No Hoochie-Mamma ones, but a slight one about an inch are tolerable.  Sneakers cause too much discomfort, so I usually try to find a slide-on that I can slip my feet out of when eating out. 

 Let’s talk the bodily side: things like bladder, bowel, and gait.

Bladder issues?  You bet.  Before surgery I leaked all the time.  Now it is rare, but does happen.  All depends on the discomfort level I am at, the amount of activity and the activity’s duration.  I am always prepared.  Bowels, for me, was never an issue except with my diet.  Got rid of gluten — got rid of those issues.  Problem solved.  [ Just look at any post about Life Style Change and you will find something about changing what poisons I have put in my body.]

Now to the one that I totally have no like for is the PGAD.  That one is still hanging around to my dislike.  It has not lessened, but I have found a way to ease it and even stop it from getting worse.  It comes on, for me, with the number of times I go up and down stairs, or how long I drive and shop: in other words – how long I am on my feet.  I will get a warning bee sting and that tells me to be careful and get off my feet for a few moments which includes no driving.  If I am unable to rest, then I will be forced to endure until I can get home and take a low dose Amitriptyline.  (Not medical advice.)  I will be asleep within an hour.  But that will stop them in their tracks, and I can go another few days without issue.  It is not a drug to be taken daily for this symptom.  [ To read more try these: Maybe? Medicine? ]

Now to the gait issues.  The more tired I am, the worse it is.  I get foot drop, but that may be from another disease that has been suggested to me.  I am getting spells(?) of my legs refusing to move for me.  This has increased, but it happens when I am extremely tired and have been walking.  I keep my walker handy, but will only use it when everyone gets mad at me for stumbling around. 

Let me tell you how sleep, our favorite past time, has gotten better.  Before the Tarlov Cyst surgery, if I could rest for an hour or two (not sleep) I was happy.  Now, I can get a few hours of true sleep and am ecstatic.  But I have a problem that started after the physical therapist tried to paralyze me, before I learned I had the cysts.   [ Physical Therapy If I end up on my tummy, I become stiff or frozen.  I cannot roll myself over, much less raise my own legs.   I am in excruciating pain when this happens, and the rest of my day is worthless.  If  I sleep through the start of the burn (usually because of medicine) then when I wake, I will not feel anything but my neck and face/head.  As I wake more, and try to move, the pain sets in.  As someone tries moving my body I could scream.  Getting to the potty, which is what will wake me, I must have help to just sit up and stand.  That will be a day that the walker is brought to my bed.  That is my “queen” day.  I do not get up unless there is an extreme need, such as food or potty.  Usually about 8 hours later I am back to ‘normal’[ Another reading is 06/04/2016 Update   and  Let’s Wake Up ]

Some of the daily household chores that I can do, but at a very limited basis are:  Vacuuming one or two rooms, never my stairs.  Dust anything I can stand on the floor and reach; step stools are something I rarely attempt.  I have a squeegee for the shower and rarely stretch to clean a tub.  Standing to wash dishes is not comfortable, but I can do a small sink load.  Cooking a full meal can be done – if done in stages.  That is, salad prepped before the meal is cooked, so I can rest before standing at the stove.  One thing that makes life miserable, still, is using a broom or rake.  I can’t figure that one out, but it is what it is.  Since my laundry is down stairs, I try to camp out in the guest room while I attempt to knock that out once every two weeks.   To sum it up, the body movements that cause problems are:  driving, ladders and step stools, reaching above my head, and even walking too fast.  Riding in the car is still in the back seat, in my nest, if I am going out of town.

My exercises that I can tolerate is simple walking.  I hate exercising, but would love to be able to afford a heated pool.  When I have had therapy, after surgery, the only way I would have it is in water.  I do stretches each morning and throughout the day.  [ Suggested reading is: Daily Personal /Physical Goals ]

So, you know I rarely take a narcotic for pain.  It has to be “pain”, not “discomfort”.  Changing my personal opinion, of what is pain and what is discomfort, has enabled me to stop taking anything.  It also helps I use essential oils like Frankincense, Hemp, and Copaiba.   There are several supplements that I take on rare occasions.  My personal thought is that if I keep putting things in my system, I am not helping my system to regulate itself.  (Again, not medical advice.)  [ Two posts that help explain this are: Drugs and Digesting Pain Reactions . Another is 6/27/2017 to 07/06/2017 Update ]

The only other thing that I could cover is the fear that we can have sneak up on us.  There is the fear of falling, the fear of being attacked because of a handicapped sticker for our car.  Then there is fear of losing the ones that we rely on for care-giving.  Even the fear of going outside of our homes and comfort zones.  This is where we need to learn to laugh at ourselves, build our faith and learn acceptance.  [ One post I enjoyed doing was,  I Can See It! – Hope You Didn’t Hear It!  and another that describes this ‘fear’ is,  Inability and Fear of Getting Out ]

I really do not know what else I can share except that I will never be sorry I had the surgery to help with the Tarlov Cysts.  I want everyone to understand that I accept that I will never have my old life back.  I will never be rid of some of the nerve activity.  I will always have the chance for my baby cyst to cause me issues further down the road.  I am knowledgeable about what other illness I need to be on the look out for.  But I am staying positive and not looking for them.

Also, I have mentioned before that nothing in my blog is to be medical advice.  I must reiterate that.  My blog is about the disease and what I have learned and experienced.  I have no medical degree. 

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