JOURNEY REVISITED

I started this chronic illness/pain journey blog about a year ago even though my problems started many years before. Looking back I have developed quite a long list of medical issues and still fighting for my survival, not only physically & mentally but also financially.

My body doesn’t know if it’s coming or going half the time and I am not getting any better. When I am feeling slightly well and do stuff around the house, which is an embarrassment because I’m usually a clean freak, I am not functional for days after. Mind you I don’t do much either, I don’t think I do.

I’ve heard that when one becomes as ill as I am we begin to mourn our former self, this is a very true statement. I long for my former self, I cry for her to come back. I miss being able to do everything and anything, I miss working hard, playing with my grandkids and driving. OMG…I miss driving so much! I miss being able to cook big dinners and family gatherings, being able to clean my house all in one day from top to bottom.

Now I can barely stand long enough to make a sandwich, I have to lay down and rest after taking a shower. Doing dishes, if I’m able to, takes me almost all day because I have to rest so much and I am not even going to begin on dusting, vacuuming and mopping floors. I have no one to help me and can’t afford someone to come and do it all for me.

The chronic pain/illness, nausea, neuropathy, vertigo/dizziness, blurred vision due to Glaucoma and my eye drops, brain fog, major GI issues, keeps me in bed most of the time because this is where I am most comfortable. Going out into public provokes panic attacks because I have anxiety. Have you ever watched a Werewolf movie? When the person is going through agonizing transformation and you can hear every bone in their body breaking, muscles; ligaments and tendons being stretched beyond their limits. This is what I feel like when going through a flare, which happens several days out of the month. Sometimes I wish I would just change into a Werewolf, at least I would get something out of it.

Sleeping has become a hit or miss and generally I get my best sleep during the day which kind of goes great with the above Werewolf statement. Unfortunately for me sleeping during the day is not always an option. I have appointments all the time and of course business to deal with during the day.

I am a “Chronic Werewolf”, I actually like this analogy, and it suits me. FYI...I might use that later!!

From head to toe:

·       White Brain Matter Disease

·       Glaucoma

·       Meniere’s Disease

·       BPPV (Benign Paroxysmal Positional Vertigo)

·       Rheumatoid Disease

·       Fibromyalgia

·       Anemia

·       Vitamin D & Potassium Deficiency

·       Leukocytosis

·       DDD (Degenerative Disc Disease)

·       Cervical Stenosis

·       Kyphoscoliosis

·       Bone spurs

·       Hypertension

·       Borderline Diabetic

·       Anxiety

·       Depression

·       Non-Alcohol Fatty Liver Disease

·       GERD (Gastroesophageal Reflux Disease)

·       Brain Fog, yes, it’s a thing.

·       Chronic Headaches

·       Fatigue

My list will be updated as time goes on...

My platelet count is high so now I will probably have to go through more testing to find out why, and my RDW has gone up as well. I also want to have a spinal tap done; this will be able to tell my doctors a lot about what is going on in my body as well as my brain. I have a lot of cognitive issues that greatly concern me.

I have gotten to the point where I hate to eat anything; everything seems to make me nauseated and causes abdominal pain. I guess it’s a good thing that I’m hardly ever hungry!

Outside stressors do not help things either. Covid pandemic is a nightmare! People not wearing masks, complaining about it or wearing them improperly really makes me crazy. I’m afraid if I get it I will die which I am nowhere near ready to do yet. No one takes this seriously and I am also scared that I won’t be taken seriously in the ER or clinics. Past experiences have shown me this. I don’t know if they think I’m drug seeking, if the color of my skin has anything to do with it but it’s getting out of hand.

When a person, like myself, goes to the ER because we are sick and in pain we go because everything we have at home for meds isn’t working and we need compassionate care, help and understanding. I get dehydrated a lot because of medications I have to take and sometimes no matter how much water I drink I need IV hydration. Sometimes my nausea, dizziness/vertigo gets so bad that my Zofran and Meclizine doesn’t work and I need something stronger by IV. My body doesn’t break down my medications so it can get to where it needs to go to help me the way it should because I have absorption issues. When the nurses and doctors see all your issues, because it’s all on their computers, the last thing they should be doing is asking you questions and treating you like crap as you are vomiting violently into a bucket.

Then there is all this craziness with “race wars”, this is what I call it anyway. It’s ridiculous and nerve racking! I’m terrified to go out for this reason as well and I am constantly worried about family and friends in “Blue” and my grandchildren as well. We are a diverse family; skin color is irrelevant to us. What matters is content of character, good morals.

My husband is not well; doctors are talking “maybe cancer” because he has blood in his urine as well as protein. I know a lot of this is because of his uncontrolled diabetes which is his own doing. I have a hard time feeling bad for him because he brought this upon himself by not taking care of himself, going to the doctors and taking his meds. Not sure how I’m supposed to handle this. I went through this once before with my ex and it didn’t turn out well and I cannot handle going through it again. Am I a horrible person if I leave?

Out of all the bad stuff I am very thankful for my family. They are there for me and support me every day in some form or fashion. I would not be able to survive this without them. I also have some pretty awesome friends as well; they get me and make me laugh.

Social Security is taking forever with my Disability case! Are they blind or stupid? This is what I ask myself every few weeks when I check on my case. Anyone can see just from looking at my diagnoses and mile long list of medications that I am unable to work, hell I can barely carry on a conversation sometimes. Just writing this blog has been a challenge with grammatical errors, misspelled words, and sometimes I get a twitch that makes my fingers tap on a character one to many times, lol! Yes I find this amusing because I used to me able to type 60+ WPM without mistakes.

Which brings me to this…I will be doing a Go Fund Me fundraiser, I am hoping I will not need to be doing this for very long but all the help I can get will be much appreciated and will also help lessen the financial burden off my family. Please stay tuned for that link and subscribe to my blog to keep up with the latest info.

 

As always...