you're reading...
Daily Life, Emotions, Medicines, Symptoms

02/26/2021 Update

How did you like me slipping in a December update so late?

So, it has been several months.  I know, shame on me.  Life has gotten a little crazy and I was not in the right frame of mind to keep the blogs updated.  No, not depression.  Yes, to being kinda pissed off.  I have learned more about myself with this move.  I knew I was stubborn, but I did not know that I can not stand to be not busy.  Yeah, when the lovely Tarlov Cysts reared their ugly selves I learned how to ‘not do’.  But that was a preservation action.  You know, not doing so I would not throw my pain into overdrive; not doing so that I would not spend my whole day crying, and on and on….  But now with the years of constant discomfort at some level, I have adjusted somewhat.  Today that ‘not doing’ is more of a pain than the discomforts are.  It has taken me from 2014 to the present to learn to cope with living in discomfort and being able to ignore it to some degree.  Oh, there are days that there is no ignoring, and those are the days I force myself to partake of the ‘no doing’; maybe take some meds, and then maybe regret taking those meds. 

Just for fun let me give you advice.  If you decide to purchase a house, that is over a hundred years old and been vacant several years, slap yourself.  Either that, or be prepared to have millions of free cash sitting around.  You will need it. If you don’t have cash, then be of the age and stamina to be able to do the work yourself. Now mind you, mentally I am still 16, but….. We all know better. Also, don’t have any family members that can not be around cats.  You will have every outside critter trying to move in with you; you ne-eeed that cat.  On that note, there are lots of cats that hang around, I don’t think they belong to anyone.  I have been giving special attention to a grey one, hoping he will start bringing me presents at my back door.  He still won’t let me within 10 feet of him, but he has started letting me know he is around when I am outside.  He wants that sip of milk or that sliver of chicken I have left for him.  Since moving into this house we have had pillars and metal beams put under the floors [there were only fireplaces and two large rock used as supports], we had to remodel the bath room and add laundry, we had insulation installed in the attic, the water pipes that were metal leading into the house had to be replaced, several minor repairs to the roof, trees pruned, and needed a new fridge. The current project is sealing up the ceiling joints.  The ceiling is original wood tongue and groove.  Oh, did I forget to mention the electricity.  That one is not even half way done.  We can not use a single plug that is in the floor due to the fact that they were never grounded.  I guess now you can figure why you need those millions.

Now let us talk health.

For the last few months, I have pushed this body until it shuts down on me.  It really does not shut down but it lets me know it has had enough. After traveling to West Virginia last year, I have not had an easy path.  I get lots of good days and then bamm!  I am forced to slow down or even hit the bed for a few days. I think that one of the co-morbid s, that could go along with this disease, is trying to become the dominate disease.  I refuse to give it the time of day, I don’t want to accept that it is there, so why even mention it, right?

I do know that when I am about to lose my legs that I get a deep burning in my thighs, and then the knees want to give out.  I get to a spot, usually when there is nothing within reach to grab or hang on to, and then I know to stand completely still and yell for help.  I have learned the warning signs that my legs are going to fight me and not bend properly to take a step.  And the funny thing is when this happens, I hear my brain say — “I dare you.”  There are lots of days that I have to deal with swelling along the surgery site and it seems to be getting larger and more painful to deal with. [On a side note, I have cheated on the clean eating life style.]  I am starting to wonder if one of the cysts higher up in my back is becoming active.  I am starting to get face pain.  Yep, the skin and muscles hurt.  Not to mention that the area around the bra strap is always burning.  Yep, “burning” is a good descriptor for that.  Even when I forgo the bra, I have the sensation of a hair straightener being laid on my back.  Likewise, I am still dealing with all the other symptoms of Tarlov Cysts, but nothing like before my surgery.

Now let us talk the meds I have been using.  What meds?  Very few times have I had to resort to them.  I have three different muscle relaxers, howbeit one is a few years old, the other two I had renewed last fall. Then the doc was kind enough to renew the Morphine sulfate, lowest dose and cut in half.  Then I had the xxanax refilled.  Some might wonder if I take all those together.  Heck no, I might seem stupid but I ain’t.  All those drugs slows your breathing to some point, and if they were taken together then you could kill yourself.  I never, never mix the meds.  Then add that I rarely ever, ever take two doses consecutively.  I always wait several hours after the prescribed time to take the second dose to give my body a chance to think about if I truly need a second dose.  95% of the time I can deal without that second dose.  It is not that I am a glutton for pain, but that I have done research on the effects of all the chemicals that go into making these pharmaceuticals. Half of them have some type of heavy metal and other poisons in them.  Yep, those drug companies have found a way to perpetuate their income.  Give you one med to ‘manage’ something, oh but wait, there is a side effect that we need to give you something else to take for; and you guessed it, you reacted or were further hurt by their med so now you have to ‘manage’ something else.  A good book to read is the Wahls Protocol.  No, I get nothing for suggesting it.

Let me share that I think I am at a point that I cannot take even the sulfate version of the Morphine.  This last time when I took one half, I really needed some sleep to get my mind off what my body was complaining about.  I took the med and settled in bed. Then not an hour later I had extreme chest pain, I hoped it was heart burn.  But I did wonder if something else was going on.  I did not get a bit of pain relief.  I got double the pain in the form of heart burn, head ache, and not being able to relax.  Then another lovely started up, I got so jittery I wanted to scream. Where is the ‘high’ these meds are suppose to give you?  After inhaling the tummy meds and rocking myself for hours I was able to doze off.  Would you not know it, the hunger kicked in.  I had gone about five hours since I had put a single thing in my gut and it was mad at me. I can not sleep or doze on an empty stomach.  Add, that while the heart burn was attacking me, my skin was itching like mad.  It all boils down to — I took what I had hoped to be a little bit of pain reliever, just to have the total opposite.  Either I am becoming intolerant of the morphine, or some component in it; or the batch from the drug company was bad.  But having some type of reaction from meds of any sort is becoming a common event for me.

While typing this, it dawned on me that my surgery was years ago.  I started this journey in the spring of 2014. Well really the journey started years before, but the pain from the Tarlov Cysts became unpleasant in the early part of 2014. Then all that year was spent being further damaged by a physical therapist, and being told that it was in my head.  Then finally finding out the Cysts existed and doing my own research.  Learning that something could be done to help with the pain, understanding there was no ‘cure’, and planning surgery.  To finally in December of 2014 having that surgery.  I have spent six long years learning and coping.  Being angry, happy, growing in my spiritual life, and just plain being a better person [I hope anyway!].  I am not finished and will never be finished with the Tarlovs and I will always have to ‘manage’ my life while dealing with it and other diseases.  Happy Trails?  Maybe.  Stubborn Trails?  I sure hope so.

I guess I gotta do the “none of this is medical advice” spill.  So nothing on my blog is medical advice!  Zilch, zip, zero.  Go see your doctor, and that ain’t advice either.


No comments yet.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 113 other followers

%d bloggers like this: