SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE - (Second of a series)

Second of a series:

It is difficult to obtain adequate medical attention when you are an invalid.

 

Over five years ago, I lost my ability to stand up. Since then, I have to be raised using an electrical motor or a lift. Since then, I don't get physically examined when I go to the doctor because nobody in their office can help me get up to the examination table. All I get to do is just talk with him or her about my ailments.

The last time I visited my primary doctor, I was asking him to give me the name of barrier cream to help me prevent the development of a chair sore that I was sure had started to break in my derrière. He immediately offered to examine me and asked me to stand up and climb to the examining table. When he realized I was not able to do it, he asked my husband to help me, but my husband is also an old person and can not lift me anymore. For that same reason, I stopped going to the dentist, to the urologist, to the gynecologist, and to many other doctors. No doctor's office, that I know of, has the equipment to lift patients from a wheelchair to the examining table.

To give you a sense of what it's like to lose your capacity to stand and walk on your own, I'll tell you that I haven't been able to weigh in a doctor's office in over eight years. I have no idea how much I weigh.

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE - (First of a series)

 

It is a fact: to work properly, a human body needs to be able to move, otherwise, it rapidly deteriorates. 

First post of a series:

ANGST

Severe pain in my left heel jolted me up one night. To avoid disturbing my husband's sleep until it was time to turn me, I decided to shift the position of my foot first. I tried again and again, but I couldn't since I can't move my legs or even lift my feet owing to muscular dystrophy.

It was aggravating to be awake in the middle of the night with agony and unable to move my feet, legs, or arms, so I prayed to my Guardian Angel for help. My invisible angel assisted me in some way because my other angel, my flesh and bone husband, awoke and assisted me in changing the position of my foot.

BEING A QUADRIPLEGIC CREATES TREMENDOUS STRESS ON A PERSON

 June 17, 2021

I am getting very tire of having to fight so fiercely to achieve the things I need.  Let me explain why so you will understand better: for instance, the past two nights I slept only 4 hours in spite that I was in bed for 7 hours.  Since I am a quadriplegic, I have to be repositioned at least every 5 hours or the pressure points will give me wounds. My husband has been my sole caregiver, but just a few months ago, his cardiologist diagnosed him with Congestive Heart Failure. Also, my husband had stents placed in his Aorta vein four years ago.  So I came to the conclusion that we now need extra help and hired 2 caregivers.  One, from Monday thru Thursday, and the other one Friday & Saturday. Which means a lot of money!  This has me extremely upset because I don't know if I am going to have the money to pay for services like that for a long time.  

The stress of being a quadriplegic creates on the person, as well as on their loved ones,  tremendous anxiety.  

A VERY RUSHED SHOWER

 A  Home Health company agreed to temporarily send a lady to help me shower.

         "I will be at your house at 2 pm." She called saying.

She showed up at around 1:30 -which is within the window of time one can reasonably expect. But what was not reasonable is the hurry that the poor woman was acting with. And even worse, putting us on.

         "Mrs. Ross is the 7th person I have bathed today, and I still have two more to do. From here, I have to drive back to Tampa and I already have been to…" And she named cities that I don't even remember.

All I remember is the rush Dan and I experienced…I was trembling from head to toe, Dan was livid. 

We were pressed by her haste to the point that I told her to only wash the most important parts: head, underarms, private parts, and feet. We told her to just dry me from the waist up and put my shirt on because my husband has a hard time putting my shirt on but that he would dry my legs and put on my panties and pants.  40 minutes later she was gone.  

This episode has left me reflecting on a couple of things: 1. - I wonder if the help provided by a home health aid of that type is worth the stress it causes. 2. - How well rinsed a disabled person gets when bathed in such a hurry? Personally, I think leaving soap in some parts of the body could cause irritations.   

MY PRIMARY DOCTOR GETS A HOME HEALTH CARE COMPANY TO VISIT ME!

 

A home health care company representative called me to set an appointment to visit me for them to evaluate my situation. My husband explained to the representative (a lady) that due to our difficulties we were available only after noontime.  She said that she understood perfectly well and that she could be at our house the next day at 4:00 pm.

She was here as promised. After examining me she told us that I did not have any open wounds, that my skin was looking good. And she agreed to temporarily send a lady to help me shower. My husband and I were enchanted! FINALLY, HELP IS COMING OUR WAY!

BEING A QUADRIPLEGIC IS DIFFICULT

 

Being a quadriplegic is hard. Not only because it's tough not to be able to scratch where itches, but also in so many other instances. For example: Due to my impossibility of turning or even shifting my weight a little, I can no longer spend six hours in bed; I hardly make it to four hours before the pain in my hip becomes unbearable because lying for hours in the same position causes pressure points. Pressure points if left unattended turn into 'bedsores' (decubitus ulcer):https://www.healthline.com/health/pressure-ulcer). 

Bedsores easily become infected. A bedsore develops when blood supply to the skin is cut off for more than 2 to 3 hours. As the skin dies, the bedsore first starts as a red, painful area, which eventually turns purple. Left untreated, the skin can break open and the area become infected:https://www.hopkinsmedicine.org/health/conditions-and-diseases/bedsores

The same thing happens when I sit in my wheelchair.  After three hours, I feel as if someone is setting my ass on fire.  I told my doctor that I must be getting sores and asked him to check my butt for advice on what to do, what cream I could use to prevent that from happening. 

He told me that since I was not able to climb or be lifted to an examining bed, not even to stand up and have my pants pulled down, he could not examine me at his office but he could request the visit of a Home Health Service. Medicare covers that type of visit. I begged him to do it ASAP.

MY FOE DYSTROPHY HIT ME WITH A HUGE WAVE OF WEAKNESS

 

I have not written on my blog for near two months! The reason being that my foe dystrophy hit me with a huge wave of weakness, turning me into a quadriplegic!  I no longer have used of my arms; I can't lift them or even move them. When I get an itch on my head or in my face or anywhere else in my body, I have to ask my husband to scratch me. And let me tell you, that can be a frustrating experience for both him and me because it's so difficult for someone else to find the exact place where another person itches!

Luckily, I still can move my hands a little, so I am going to make the best use of them and write as many entries as I can.