A New Pair of Pants

I guess when you don't feel so well, you just don't feel like doing much.  That pretty much sums up my day.  I just don"t even move, because when I do, it produces pain. So I find sitting in the recliner, motionless is often the way to be.  I am trying to find activities to keep my brain active because I know this is no way to live day in/out.  I have got to find things to do from a reclining/sitting position.  I have gone over the fact that many friends have drifted, which I have come to terms with.  There are some friends that have not, and they are incredibly loyal, checking in daily. Sometimes hourly conversations.  I would say on an average week I have a visitor which sure breaks up the monotony of the day.  For the most part, I do not leave the house accept on the days I have an appointment.  Phil usually takes the car which is just fine by me.  I often relax, in comfies, I struggle to bathe, but I get it done..eventually.  Ba...

Throughout the years as a Social Worker I have assumed the role as a Case Manager and helped hundreds of my patients/clients apply and be accepted for Social Security Disability.  Back in the early 2000's it started out as a paper application, 15 or more pages we would do together (I would do for them, as many were too sick to do themselves). As years progressed, it has now become an online version of the application.  I never wanted to have to apply for Social Security Disability, let me just get that out there to clarify.  The way it works is this... I am on a Long Term Disability Policy through my previous employer for two years.  They require me to apply for Social Security.  If I am denied, they have lawyers that help the appeal process.  If I am approved, Social Security becomes the first payor and Long Term Disability picks up the remainder of what SSD doesn't pay for the rest of the two year term of the LTD contract.  So, upon this agreement Lo...

Its difficult to explain to "healthy people" the difference between my good and bad days.  As time goes on the picture becomes more clear.  As we thoroughly enjoy our UFC parties they become increasingly difficult for me. This is just one example I can think of.  We get the house "ready" which requires more standing then usual, preparing some food (more standing then usual) and then the entertaining (more standing then usual).  Let's just say the next day is a bad bad day.  I typically am in bed by 3pm and stay there all night.  The increase in inflammation from standing causes an increase in fatigue.  That's an example of a "bad day".  This will almost always happen after any social event.  I often have to "pick and choose" what I do socially.  I will always pay for it the next day, and sometimes two or three.  Sometimes things just aren't worth it to me.. no offense to anyone.  My good days I am able to get out of the house, ...

Having a great deal of maturity to handle a chronic and intractable illness is a must.  I look at some of those that surround me and just know, that I am way ahead of them in maturity level.  Maybe it's this disease, maybe it's my level of education, my values, the way I was raised. Whatever it is, I just handle things differently.  One example is social media, but that will have to be saved for a post all in itself.   Another example is responding to phone calls and text messages.  I tend to respond within a reasonable amount of time, unless I am in an appointment or sleeping, I usually answer right away.   I have had friends tell me "so sorry, I didn't get your message". Come on now, we don't live in the dinosaur age.  There is a cell tower every so many miles.  Lets get real...the reason you didn't respond is because you didn't want to go to that lunch I invited you to.  Just grow the balls to say "I am sorry, I can't or didn't w...

I have very much appreciated everyone in my life.  Words that constantly ring in my ears are "call if you need anything".  Those are such precious words to me.  The song Lean on Me plays over and over in my head some days.  I often hear it and become tearful.  Why?  I will tell you why... When you become chronically ill, isolation just happens, you become more vulnerable for abuse, and depression, and you grieve.  Leaning on friends during this time is so important. But, where are they?  They go on with their lives, that's where they go. Most do not understand what it's like to be chronically ill.  If you try to educate them, lets say post about it on facebook, then you often get called out for "trying to get attention".  If you post about how you are feeling, you get called out for "complaining".  It's a lost battle.  People expect you to be able to do the same things you once could do.  There are very few people who und...

There have been many times that I have been called a hypochondriac.  Due to my incessant need to know what was wrong with me.  During the time period from approximately 2010-2016.  I struggled knowing the names of the multiple diagnosis I would come to have and during those times I was injured and  diagnosed with even more.  One of the problems with these diagnosis are the rarity of them.  Arachnoiditis is  recognized by the National Organization of Rare Disorders.  The link is as follows:  NORD-Arachnoiditis  is on the list of rare diseases. It started in 2010 when I began having "back pain", I started having treatments from my sister who is a Chiropractor.  When she felt it was beyond her scope of practice she sent me to the Core Institute to be evaluated by an Orthopedic Surgeon.  I had an MRI and xrays and was told they did not see anything "abnormal".  By this time it was 2011, I had been on pain medication for over...

January of 2017 I started to receive Botox injections into the pelvic floor muscles.  These would be done as a surgical procedure at St Joe’s hospital under general Anesthesia by Dr Michael Hibner.  These injections are meant to relax the pelvic muscles that are in a spasm.  The first go around I as extremely nervous. I was becoming more and more allergic to tapes and adhesives and it seemed they were using them on me each time I went to the hospital, just being careless.  When I arrived I told them immediately of my allergy, although it did not seem to help, I still ended up with tape and adhesive on my body that time.  The Botox took place, I went home the same day, I remember going over and signing the long list of side effects that could happen, but I was hoping none of those happened to me. Once again, we are dealing with mature issues, if you can’t handle reading them, stop now. I have had to handle every single thing that has happened to me without givin...