UPDATE...

So...since my last "medical" update things have gotten worse. My Glaucoma has gotten worse so now I take, Timolol Maleate 0.25% Opht Sol 5ml one drop each eye in the morning, Olopatadine 0.1% Opth Soln 5ml one drop each eye twice/day and Latanoprost 0.005% Ophth Soln 2.5ml one drop each eye at bedtime.

Links: 

https://www.webmd.com/drugs/2/drug-13612-507/timolol-maleate-ophthalmic/timolol-solution-ophthalmic/details

https://www.webmd.com/drugs/2/drug-850/olopatadine-ophthalmic-eye/details

https://www.webmd.com/drugs/2/drug-14256/latanoprost-ophthalmic-eye/details

My Autoimmune disorders have gotten worse so now I'm on an infusion medication called Actemra (https://www.actemra.com/ra/taking-actemra/taking-actemra-iv-infusions.html). My hearing loss has also gotten worse in my right ear, I'm at 65% hearing loss now in that ear. Nothing can be done about that at this point and when the time comes all I can do is have surgery to become completely deaf.

I will be finding out my neuropsych test results on 6/25/2021, this ought to be interesting and I will have to do an update on this at a later time. I have been diagnosed with Type 2 diabetes but the medications I have tried so far made me breakout into a rash or caused GI issues and I have enough GI issues.

Come September I will be seeing a spine specialist at UW Hospital in Madison, WI because I have multiple spine disorders/diseases including but not limited to: Spondylolisthesis, Kyphoscoliosis, Spondylitis, Osteoarthritis, DDD (Degenerative Disc Disease), Broad-Based Central Disc Protrusions at the C4-5, C5-6, and C6-7. 

To date my conditions consists of:

Rheumatoid Arthritis

Spondylolisthesis

Kyphoscoliosis

Spondylitis

Diverticula(osis/itis)

Colitis

Connective Tissue Disease

Chronic GERD 

Irritable Bowel Syndrome W/ Constipation

Chronic Nausea

Primary Open Angle Glaucoma

Fibromyalgia

COPD/Asthma

Chronic Headaches

Chronic Pain/Fatigue

Chronic Autoimmune Gastritis

Meniere's Disease

Anxiety/Depression

Leukocyte Disorder (Leukocytosis)

Hypokalemia (Potassium Deficiency)

Vitamin B12/D Deficiency

Immunodeficiency (Due to Drug Therapies)

Vertigo/BPPV (Benign Paroxysmal Positional Vertigo)

Bilateral Leg Edema

Polymyalgia

High Blood Pressure

Non-Alcoholic Fatty Liver Disease

Type 2 Diabetes

Sjogren's Disease

Nuclear Sclerosis of Both Eyes

White W/out Pressure of Peripheral Retina of Both Eyes

Lattice Degeneration of Peripheral Retina, Right Eye.

Osteoarthritis

DDD (Degenerative Disc Disease)

Broad-Based Central Disc Protrusions at the C4-5, C5-6, and C6-7 

White Brain Matter Disease with either

Chronic Microvascular Ischemic Disease or old Demyelinating Disease.

ICD-10 DIAGNOSES

Major Depressive Disorder, recurrent episode, mild (F33.0)

Persistent Depressive Disorder (Dysthymia)(F34.1)

Mild Neurocognitive disorder, due to other

medical conditions (G31.84)

As time goes on I'm sure this list will grow and my medication list consists of 27 different medications, four of those are supplements. 

Most people would look at this and wonder why I'm not getting Social Security Disability yet, I am wondering the same thing. I have been fighting for it since the end of 2018 and keep getting denied. I'm wondering if I need to have one foot in the grave before I'll get it, I will not give up though.

Any help would be much appreciated whether it's money, gift cards or you can send items to me. Message me and I will give you a mailing address. GoFundMe, PayPal and Wishlist for me and my furbabies are listed on the left side of my blog page, and I will also include links below.

I will continue to post updates as they come along.

Links:

Chewy-Furbabies

Walmart

PayPal

 

MY RETURN TO GOD

 

I have chosen to enter into the life of the Catholic church because I have been called back to our Lord & Savior’s arms. I wish to reaffirm my relationship, praise and honor Him. He is my only path to salvation and everlasting life. 

My life with Jesus began when I was very young, Baptized and Confirmed in the Episcopalian Church, or “The Church of England”. This of course was not by choice and my Mother, being raised Catholic herself, did not choose this for me, my stepmother did. I however was obedient and loved Jesus just the same.

I loved going to church, I sang in the choir, was an Alter Girl and prayed day and night. I often thought of becoming a Nun as a child but knew that there was no such thing in the Episcopal church and was too afraid to ask to change.

As time went by and I grew up my world view changed, many things happened in my own personal world that kept me from Jesus. With that I began to sin, parties, premarital sex, alcohol, drugs, etc. I felt His presence and I knew what I was doing was wrong but because of all the horrible things that had happened I didn’t think it mattered. How could such a loving God allow horrible things to happen to His children and if He loved me so much why would He have allowed me to suffer as He did, I was just a child.

Years went by, I fell in love and had my first-born child out of wedlock. Not only did I love my son’s father with all my heart, but I loved this child like I have never loved anyone before. Within 2 months of his birth, I lost him to SIDS (Sudden Infant Death Syndrome) and I became extremely angry with God.

Haven’t I been through enough in my life? No, I wasn’t perfect, and I sinned like so many others do but I didn’t deserve this. I thought to myself, “There are so many people in this world who are far worse than I am who doesn’t deserve children”. People who steal, rape, kill, cheat and get away with it, have a good life and children. Where is their punishment? From that moment on I completely closed the door on Jesus and walked away from my faith.

Since then, I have had my ups and downs and was blessed with two more children. Been divorced but found love again and remarried. I have beautiful grandchildren and once again fell in love with them more than I did with my own children.

Now, my husband of 14 years, has been diagnosed with End Stage Renal Failure due to type 2 diabetes. I have been fighting my own body since 2016. GI and lung issues, multiple autoimmune & rare disorders, rapid hearing and vision loss and the hits just keep on coming. Then a few years ago I felt this pull, it was a pull I hadn’t felt since I was a child. I knew what it was, but I wanted to ignore it, so I did. Why would I want anything to do with such a “Loving God” when I spent most of my life suffering? Little by little things would appear, posts I’d see on Facebook, things on the news, people who have come back into my life and just these overwhelming feeling I would get.

I stopped one day and thought to myself, not only do I want and need Jesus back into my life, but He wants me too. This is where I need to go back about 20+ years, try to keep up.

20+ years ago, my life was at a crossroad, I was searching for answers to the “WHY” in life and started studying other religions such as “Wicca” or “Witchcraft”. No, I didn’t find the answers I was looking for and things just seemed to continue to get worse. A couple of years ago when I started feeling that pull is the same time, I gave up searching and stopped messing with Witchcraft.

All that hate, anger and darkness I had inside of me was blocking the light of Jesus and once I got rid of it He reached in and took me into his arms. I can look back 14 years ago and see that from the moment I met the man I am in love with and married to now was the beginning of my Journey back to God. My husband is Catholic, born and raised but also has been away from the church for many years. There is a part of me that just knows his Mom & my Mom had a little something to do with all this as well.

My outlook on things past and present have changed, I am more accepting, and I know whatever lies ahead I will have our Holy Mother Mary, our Lord & Savior Jesus Christ, the Holy Spirit and all the Apostles by my side. Jesus can take the wheel and drive me the rest of the way because it is his will.

DENIED SOCIAL SECURITY DISABILITY-5TH TRY AND COUNTING

 

So the Medical Determination Board of Wisconsin thinks because I'm 52 years old, I have a college degree and work experience I don't qualify. So they must not recognize my autoimmune & rare diseases as a disability when in fact it's on their website under what they consider "DISABILITIES". I am getting worse, no matter what I do and how hard I try I'm getting worse. 

I can not stand or sit for no longer than 5-10 mins and most comfortable laying down. Not only is this physically exhausting but also mentally exhausting. I can no longer wear headphones to do the jobs I previously did because of my Meniere's Disease, I can't look at a TV or computer screen for long periods of time without feeling dizzy because of my vertigo. I am always nauseated and sometimes can't eat. I drop things and have trouble speaking often. I have anxiety disorders and depression. There is no way I can possibly do any of the jobs I previously did. 

There is no remission and no cure for me. I don't know what type of doctors are looking over these cases and can determine that a drug addict is disabled when that is something they choose to do. Then turn around and say a person who has multiple autoimmune diseases and didn't choose this illness doesn't qualify. Did they get their degrees out of a Cracked Jack box? Who's in charge and how does these things happen? I want answers. 

How am I supposed to even function on my meds I take when they make me tired? Taking a shower puts me out for a whole day and by the time I'm done with appointments and treatments I'm down for hours, sometimes days. Oh...I also need help sometimes with wiping my bum because it hurts to put myself in the position to do it. 

I can't take these disappointments anymore, I'm having a serious nervous breakdown. I have tried suicide before and to be honest it's starting to look like a pretty good idea again because I don't want to be anyone's burden. 

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... 

Meniere's & Other Vestibular Disorders

Diagnosed, April 3, 2020 but this has been going on for at least a year and progressively got worse. It all started out simple enough and I thought it was just due to me getting older, not hearing well and loud noises being bothersome. As time went on my hearing loss got worse, vertigo set in and those loud noises started to do more than just annoy me. I was first diagnosed with BPPV (Benign paroxysmal positional vertigo), put on medication to help me control it. Hearing kept diminishing and all my hearing tests showed rapid hearing loss, my audiologist said that she had never seen anything like it. She ordered a VNG (videonystagmography) to be done, this showed that I lost 31% of my vestibular system. My ENT referred me to a different ENT and I was diagnosed with Meniere's Disease.

Treatments? Right now I'm on a powerful diuretic and other options are either steroid injection in the inner ear or surgery to remove the vestibule which will cut off the communication between the inner ear and the brain. Basically surgery will make me deaf and sometimes I think that just might be the way I'll end up going anyway. Why? Because living with this is already difficult, noises are painful. The air conditioner running is bothersome, listening to tv is difficult or turning the light on in my bathroom which also turns on the fan is painful. My ears feel constantly full, constant tinnitus and dizziness and my medications don't always work so I am either stuck dealing with it or I just sleep. I also get headaches, more than I used to and I get severe ones sometimes upon waking up.

I think one of the worst things about this disease is not knowing when I will have a severe attack and because I have had one attack at the grocery store it scares me to go out. I have also lost the freedom to drive because of the fact that I never know when I'll have an attack, I could never forgive myself if I were to hurt anyone. So when people talk about their "Freedoms" are being taken away from them because they have to wear a mask, I do not feel sorry for them because they really do not know what it means to lose their freedom.

This is a rare autoimmune disorder, one that will never be cured and one that will only get worse like my other autoimmune disorders. How do I feel about this? My emotions are all over the place and anxiety and depression is at an all time high. Just when I think I have excepted my fate and try to organize and figure things out to get through it all I crash. I start asking myself "Why did this have to happen to me"? "What did I do to deserve all this"? Sometimes I think about ending my suffering as well as ending the burden I have become/will become to my family. I cry a lot, I'm all alone and just want someone too hold me and be their for me. I don't have that and I probably never will.

Cognitive issues are another symptom, not really sure if it's all because of the Meniere's or if it's a combination of all of my illnesses but I feel like I'm losing my mind. To a degree I am and that is so scary. I don't have the occasion forgetfulness like misplacing my keys or forgetting what you went into the other room for. I have moments when I can't put together a sentence without sounding like a kindergartner. Totally drawing a blank or unable to find my words and because of my Glaucoma and the fact that your eyes and ears go hand in hand I have issues finding things that are right in front of my face. It's not that I can't see per say but my brain is not making a connection.

I have to undergo a cognitive evaluation and working on getting tested for MS (Multiple Sclerosis) as well. If you are interested in more information on Meniere's Disease or any other vestibular disorders go to: Vestibular Disorders You are more than welcome to reach out to me anytime as well, just click on one of my Social Media Links.

IT'S BEEN AWHILE...

It has been awhile since I've posted, between my new diagnosis's, COVID-19, pain, flares and all of my other health issues I haven't been able to think straight. I'm tired all the time too and that doesn't help matters at all. So since February I have been diagnosed with Meniere's Disease which is a Vestibular disorder and have lost 31% of my Vestibular system.

To read more on these: 

Vestibular Disorders

Ménière's Disease

I have a B12 deficiency, Osteoporosis, Facet arthropathy. My whole body is literally falling apart and there isn't much I can do about it except continue to take my meds, get my injections and pray. It's to painful for physical therapy, I have a hard time taking a shower or making myself something to eat. Then there is the mental aspect of what all this is doing to me. Depression, anxiety and just felling totally worthless is very real for me and now with COVID-19 I am scared to even go out.

To read more on B12 deficiency, Osteoporosis, Facet arthropathy:

B12 Deficiencies

Osteoporosis

Facet Joint Syndrome

I have a lot of new symptoms that I need to see a neurologist about, chronic headaches, sometimes so bad that it turns into a migraine. I have a lot of neck and jaw pain as well, my legs hurt all the time and get weak very quickly. I don't have much of an appetite, I eat because I have to. Will start on a new treatment next week, Orencia infusions. Enbrel isn't working the way it ought to so I am hoping this will help bring me some sort of relief and I will still get my Methotrexate injections.

I will try to update as much as possible as well as give my feedback about my personal experiences with above diagnosis as well as my new treatment. But I suppose this is it for now...been at a loss for words and can't type worth a damn either.

RHEUMATOID AWARENESS DAY-2/2/2020

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