Living with an Invisible Illness

I am living with three Auto-Immune diseases. The ones of which are known as invisible illnesses. Chronic pain, Menieres and Fibromyalgia. My life is not pleasant as each day I suffer pain and dizziness. I have no real quality of life. I stay in my bedroom most times only eating once since I forget even to eat. Strange though I don't loose weight like I would love to do.

While working for the local Cancer center and even in the Laboratory I had a great fulfillment. I loved helping others as it was my life's mission. I even helped my Grand-mother and Mother when they had medical problems. I never thought at age forty-five I would be confined to my bed with immense pain coursing through me to the effect I could barely move. When this pain began, the doctor sent me to a Rheumatologist, considering I had been in a motor vehicle accident about ten years earlier. It would have been more acceptable to have had been diagnosed with some form of non-debilitating Arthritis since there are medications and treatments out there for it. But not this, this is life altering, giving up my career due to my doctor saying I could cause someone harm if I had a jolt of pain or a bout of dizziness was the worse day of my life. Everything I had worked so hard for, going to school for Nursing, after my husband left me with a one year and three year old to raise by myself.

The pain makes me cry. Today my hair is even hurting. Why me? I worked twenty years in the Medical Field, and lost it all to Chronic pain. is so devastating. Now I am on anti-depressants, along with pain injections, anxiety and PTSD medication. If I happen to go to an Emergency room about my chronic pain or Fibromyalgia pain, in between seeing my pain doctor, I am labeled as a drug seeker. I don't ask for anything except Toradol which is an NSAID like aspirin. I look at myself in the mirror each morning and all I see is a loser anymore. Unable to work and staying home crying in my bed. Each day I wake up and hope that it is a bad dream, but I find it is not. More pain and people don't see me as disabled since Fibromyalgia is not visible.

I am so tired so very tired by the lack of support and the exhaustion from the lack of ability to sleep. All the years I worked in the Medical field in various positions and now pain dictates my life everyday. Along with the pain comes dizziness, migraines, depression, anxiety and forgetting words as if I have dementia. This is so devastating since I was once so vital in caring for patients and their needs. Now when I pull into a handicapped parking spot and get out people judge me for they see I can walk and they don't see the me inside. The pain that now defines who I am. If I use the electric grocery cart I get the same looks. I'm thinking of having "I have Fibromyalgia" painted on the car so that people won't give me those looks when I get out. But what use would that be as half the Medical community and population don't believe in Fibromyalgia? Even people in my immediate family don't believe. People keep saying, "you don't look sick", so common. What do I have to do to have them believe me that I have Chronic Pain that I live with daily?

Now, thirteen years later there still is no cure in sight. I still have that stigma from others looking at me and not seeing my disability. It never changes. Even some family don't believe in my chronic pain with Fibromyalgia. They kept needling me to quit being lazy and go get a job and work or anything but lie in bed. Since over the years I have developed many drug allergies I don't have a great pain-reliever regime. I have tried so many ways to lessen my pain, TENS unit, Light relief unit, ice or heat packs, physical therapy, visualization, supplements and holistic measures. However, even using all this my daily pain is a four to six on the scale. I have days that are called Fibro Flares when my pain is an intense ten sometimes a flare can last three days or up to sixteen days at a time.

People who have Fibromyalgia, like I do, don't want to be sick and want their lives back to the fullest. However, because we have to cancel plans due to our level of pain for the day we are missing out on friends and family events. Eventually, people stop calling and asking. This is where depression sets in and our thoughts turn to different venues such as being inadequate, a burden on family and sometimes suicide. It varies day to day, due to the pain, as to whether or not I am suicidal, but don't act on it. Even in online support groups, when we have new members, I try to be helpful so the new person has an idea as to what they are facing. Like clothes with tags, hurt me, so it's tag-less clothes all the time. I try to let them know all the two-hundred plus symptoms or diagnoses that come with Fibromyalgia.

Yes, I said over two hundred: The ones listed are the ones I live with in my life. You can google the others.
1)Fatigue really bad after taking a shower as the exhaustion is so bad I can't do anything else the rest of the day,
2)Restless leg syndrome and spasms when I lie down to sleep my body jumps and my toes curl under with intense pain,
3)Cold hands and feet(unable to control body temperature) I can run my hands under hot water to warm them as for my feet I make sure to wear thick winter socks. It can also be ninety degrees outside and I am freezing under an electric blanket or it can be 55 and I am hot. This changes day to day minute by minute.
4)Stress
5)Dryness of eyes, mouth, skin and hair
6)Low blood pressure
7)Hypoglycemia (low blood sugar) which happens for me if I miss a meal. I get very dizzy.
8)Night sweats
9)Feeling like you have the flu but don't
10)Symptoms worsened by flying, stress, temperature change
11)Tremors
12)Weight gain or loss - for me it's gain with certain medications
13)Swollen lymph nodes - mine are under my chin and they come and go
14)Of course Chronic pain that is widespread throughout your body - It's not easily treated like you see in the commercials on television
15)Inability to go into REM stage of sleep so therefore you are always tired.
16)Cramping
17)Sensitivities - with me I can't use certain soaps (body/dish/laundry),cigarette smoke and medications.
18)Migraines or headaches for me this is 3-4 times per week.
19)Dementia or Cognitive Dysfunction - we call this Fibro Fog and most days I can't think of a word so I use the description and people are like just "say the word I'm not into guessing games".
20)Muscle spasms and morning stiffness - it's hard to get out of bed and try to start the day. I do a few stretches in bed until I can push myself up.
21)Hair loss - for years I didn't know this was one of the symptoms of Fibromyalgia.
22)Rashes - I get a lot of rashes in the summer mostly.
23)Increased thirst - which is hard on me since I have fluid restrictions.
24)Heart problems - but please get checked out it may not be related.
25)Light-headed
26)Ringing of the ears
27)Easily distracted - this is a big one for me.
28)Bloating
29)Appetite changes
30)Mood swings - another big one for me. Just like temperature changes I can be yelling one moment to joyful the next
31)Bumping into things
32)Dropping things - this too is a big one for me.
33)Hands unable to open bottles - I hate this because I may be out and need a sip of water and can't open the water bottle and look like an idiot.
34)Staggering like I am drunk but am not
35)Vision changes more often
36)Eye pain
37)Dry chronic cough
38)Hearing loss - it's my left ear that has it.
39)Frequent Sinus infections
40)TMJ (Temperomandibular Joint Syndrome ) I had it bad on my left side and had surgery for it.
41)Muscle aches
42)Unexplained Abdominal pain
43)Painful Trigger Points - there are 18 if you have 11 then you have Fibromyalgia. So far this is the only way to diagnose it until a different test can be found.
44)Frequent crying for no reason
45)Panic Attacks
46)Easy bruising
47)Uncontrollable itching - worse for me at night.
48)Fingernails that curve under
49)Burning nerve pain
50)Muscle twitching
51)Rib cage inflammation - I get this at least 1-2 times per year.
52)Tender breasts
53)Muscle weakness
54)Numbness or tingling sensations - I get this a lot.
55)Sensitivity to light
56)Poor balance and coordination - I hate this along with the pain most.
57)Disturbing nightmares - tried counseling but it didn't help me.
58)Unable to drive at night due to poor night vision
59)Stutter
60)Feeling unwanted or worthless or a burden - start of a depression episode for me.
61)Over-reaction - this is a big thing in my life and has actually alienated some of my family.
62)Nausea - this is for me everyday.
63)Diarrhea
64)Constipation - some of my meds and my limited fluid intake cause this for me. I actually struggle with it on a daily basis.
65)GERD
66)IBS
67)Bladder pain and frequent bladder infections
68)Nail ridges
69)Cuticles that split
70)Gum disease
71)Disk degeneration
72)Dental problems including bleeding gums
73)Frequent canker sores or lips splitting
74)Nose bleeds
75)Hemorrhoids

As you can see I live with seventy-five symptoms which I listed. This is just me, other Fibromites live with more or less of the two hundred symptoms. Now that you are aware of my symptoms can you imagine how horrible my daily life can be? If I could wear a shirt everyday that I go out that states all these symptoms just maybe some people will understand when I use a handicapped parking space. I no longer try to use the electric shopping carts but instead just lean a bit on the shopping cart. Being judged because nobody can see what I live with is a big deal with me and others who live with Chronic pain and Fibromyalgia. Over the years I have lost family and friend relationships because they couldn't understand my new horrible pain filled life since I am not wearing a cast or in a wheel chair. Fibromites call these "toxic people" and we are sometimes the ones who break ties with them so we aren't as stressed out. Stress triggers pain for us. And we want less not more pain in our daily lives.

Finding a cure or regular treatment regime may not happen in my lifetime. Yet, I still hold out hope. My hope is the non-ugly side of me, it's my soul. I have see many modern advancements in the medical field during my work. When I began nursing the EKG was done with metal plates and rubber straps, to hold on the plates, to do the EKG. Now, in today's times it no longer takes a half hour to do an EKG it only takes seconds. Therefore, the marvels of medicine will some day bring about cures for many diseases. I just hope I am still around to see them cure Fibromyalgia, Chronic pain disorders and the many other Auto-Immune disorders.

November 19.2018 posted

Government Stealing Us Blind!

You would think the the Government Departments would be more helpful instead they keep giving you the run around. Call this number call that. NO, we can't do that, we can't help. Go to this person or agency we are not the ones you need to contact!

I am disabled from Fibromyalgia and Menieres along with other issues. I worked as a Nurse for nearly 30 years. I paid in on my Medicare plus had extra taken out. I don't need this crap from Medicare it stresses me out and makes me Anxious.

They are not the only Government agency that gives people the run around. When will America take care of it's Citizens? When will Government Agencies be more helpful instead of passing you off to another agency? When When When?!

The Government Agencies have become lazy and don't care to us we are a friggin' Number Not a Person!!!!! It is so dis-heartening and makes me angry. I can't deal with their crap like this. All I want is a single item corrected. And that is never going to happen. I have been fighting to remove this for nearly 6 years now. And now they want a letter from a Doctor that is Dead for at least 5 yrs and no practice is open as he was the only Chiropracter at that office!

All BS just to keep the poor people as poor and in pain as the Government wishes so they don't have to help it's Citizens of the USA! All the GOVERNMENT REPRESENTATIVES IN THE WHITE HOUSE, SENATE, CONGRESS AND ALL OF IT'S AGENCIES JUST WANT TO KEEP GETTING HUGE RAISES AND LEAVE THE CITIZENS TO EAT DOG FOOD MEATLOAFS! I am a HUMAN BEING! IF CONGRESS, THE SENATE AND THE WHITE HOUSE STAFF AND EVEN PRESIDENT WAS TO EVEN TAKE A 20% CUT IN THEIR WAGES I BET MEDICARE WOULD ONCE AGAIN BE SOLVENT.

Yet every year they scream that they are getting less money yet the Senate, Congress, White House Staff and President and Pentagon and the FINANCIAL BANKING INDUSTRIES continue to give themselves large raises. This is Totally Wrong they are stealing from us and keeping us under their thumbs like Peasants they can walk all over.

 Well, I am a person and because the small agencies may get less funds or whatever they don't want to do their jobs and work with people or help people. They are lazy lazy lazy! They are Rude, Rude, Rude! They are dismissive, dismissive, and non-caring.

The money WE, the Citizens of the Great Land of the United States of America, work and work and pay into our Medicare so it is there. Oh, but no the Presidents and Judiciaries all decided years ago to take our money for their own expenses or to give it away to another Country.

Medicare, Mr. President, Listen UP! THAT WAS OUR MONEY YOU STOLD! WE WANT ALL OF IT RETURNED NOW, NOW, NOW!!!!!!!!!!!!

We the People of this Great Land of the Unite States wants what we earned and are entitled to! Get the Illegals out of our country and quit giving them thousands of dollars a month from programs designed for the AMERICANS NOT ILLEGALS!  Stop letting more people into our Country--THEY ARE STEALING OUR JOBS AND GETTING THOUSANDS PER MONTH. Heck, I have to live on a measly $750 per month so those Illegals and Immigrants can get thousands. Right now I am avery very Angry AMERICAN!!!

As an AMERICAN all I get is the run-around. I give up. Heck with Govermental BS! You are uncaring overpaid REPRESENTATIVES WHO STEAL FROM THE CITIZENS OF THE USA!!!!

One Two Cosmetics Full Coverage Lash - NOW AVAILABLE!

I have problems with my medications thinning my hair, my eyebrows and eyelashes have fallen out. All due to the meds I use for all my conditions including my Fibromyalgia, Menieres, Migraines, and many other conditions and meds I have used over the years. About ten years ago I had permanent eyebrows put on which have now faded. I came across this product, which I am not endorsing yet, and am interested in it. I have not purchased these yet. I think I would be able to put them on with my hands since they are magnetic. No glues or adhesives to be allergic to for me either. Just letting all the other people who suffer from hair on their bodies thinning or falling out. At least with lashes and my normal chapstick or lip gloss or lipstick I would feel better about myself. I will let you know more when I purchase them and use them how well they work. If  you have purchased and used these please let me know in the comments so I will know how well they work and if they work as easily as the video shows.

Life: Make Lemons or just Cry?

     Life some days can catch you with your pants down. This past summer I learned I had a small heart attack and also R-sided Congested Heart Failure. Wow, after all my other diagnosis' this is the one that really made me feel depressed and cry a lot. I did a lot of research on it and realized I was NOT in stage 1 since that was practically nothing. I was in probably midway thru stage 2 at that time. By now, seven months later, I feel I am beginning stage 3 or even 3 1/2. I know the saying when life throws lemons at you - you make lemonade. Also that God will never let you go thru anything that he doesn't think you can endure with him beside you. 

     I cry every day though. Is this my last? I made a bucket list of only 3 things when I was diagnosed with the CHF. I was lucky that I didn't have any arteries clogged - so I rejoice for that. But I do have high blood pressure and have to limit my salt, funny thing is since I was 15 and cooked at the Senior Center in CA, I never have salted anything since when I cook since.  BP is under control as is the high cholesterol which I never had before coming to Oklahoma. I've endured over 16 years with Meniere's. I have had Chronic Migraines since age 25. Some of you know that about me. Well, back to the bucket list. Listing of only 3 things:

1) to hold my son's first son when he had one - he had one Feb. 17th 2017 so I have gotten to do that - praise God.  

2) To see my first born Grand-daughter graduate. She is going to be Valedictorian and already has a scholarship to the school she wants to go to. She is 19 and graduates High School with Honors and gives her Valedictorian speech and already has her scholarship. I have been planning and saving for this coming June 3rd to see that happen. The bus ride is going to be 24 hours and 5 minutes with 4 different stops and changes. This will be hard on my Meniere's I know. I have my pug, Boo, registered as an ESA and can take her with me to keep me calm. Also, my fall on 2/21 getting out of the tub and doing the splits hurt my back in really horrible shape therefore I am in so much pain. But if I don't go my Daughter will be angry at me and disown me like she is the rest of the family). At the moment I am the only one going. So I will need to go and it is something I want to do as it is number 2 on my list.

3) To be recognized for my writings. I have had some writings put into those almanacs but you must pay so you really aren't getting there on your own merit. I have had some poems put in magazines but have only been paid in issues, And I have written for a column for an online magazine which made me feel pretty good but they went under. Recently, I wrote a short story for a contest-the winner gets $350---now that would make my bus ticket to a plane ticket and make my struggles in writing mean something to me. Not sure if I really will ever get number three accomplished before the end. 

     I feel like all I am doing is pasting a smile on my face no matter what the pain is from, my Fibromyalgia, back, migraines etc. or even dizziness from my Menieres. People ask why can't you just go" you look fine to me" and I just tell them I'm tired  or I have a migraine because I live with horrible fatigue too. Those are the only two excuses they understand--they don't believe in Fibromyalgia or some of the other things that are associated with it. I feel trapped in a body with no release, Sleep??? LOL. I do have to try to get a nap during the day. A shower feels like pellets hitting your skin it makes you not want to take one. I try very hard to take at least 2-3 per wk. The frustration of those who are non-believers makes my anxiety pop it's ugly head up and look around and say "you don't know whatcha' talking about". My Uncle can;t walk past me without poking me. He is a non-believer. 

I will be posting articles written about others to let you know what we go through. This is just my personal account of what my days are like. 

My Physical Therapy Routine Etc:

Lately, most of my time has been spent at the doctors' offices or having physical therapy. I had twelve falls in about a week's time. Eight of those times I ended up falling, with my full weight, unto my Right knee. Needless to say I had to go get a MRI of the knee. It's nothing surgical my doctor says and just adds additional orders to the physical therapy I am already getting. I had started only a month earlier receiving physical therapy for a fall that involved my neck. Because of this I have no idea if the shots that Dr. Hope had given me truly has worked (I'll let you know more in a moment). During Physical Therapy last week my therapist tried a technique that is suppose to hopefully decrease my dizziness of my Menieres. We talked about it for about two weeks so we went ahead and did it. However, the worst part was not the way he pulled me down so fast or twisted my neck making me dizzier. It was that I could not bend over of lie prone for three full days afterwards. No leaning over even more that a three to five percent angle. Well, I blew that the second day, when nobody was here, and I dropped something and bent over to retrieve it. I told him today. He plans on re-doing the technique again this Thursday (July 31st), in the afternoon.

The morning of July 31st I will be seeing Dr. Hope in regards as to whether we should continue the nerve block injections. I have such terrible pain, where I cry so much for the first 48 to 72 hrs. However, it's suppose to get better each new time-- Dr. Hope says it should lessen over time. If I do it we will have to see how often the shots are needed to best benefit my pain management. I only have one big problem with this-------it's not helping my joint pain below the neck/shoulders.

I still have fatigue and joint pain in the early morning and late afternoon each day. I'm also have some intestinal problems which I will blog about later as I have been diagnosed with both fatty liver disease and lactose intolerance these past two months.....I am currently awaiting another status of an additional test.

Auto-Immune Disease: Menieres

Menieres

Living with Menieres is living with an invisible disability. As nobody can see you are disable like those who carry a cane when they have a stroke. They are noticed. Menieres is an auto-immune disease is like so many auto-immune disease in that it will strike when it wants and can also go in to remission similar to MS. Therefore, you can go happily along for weeks, months, even a year without any dizziness that is debilitating to the effect that it throws you off balance to cause you to stumble or even fall or make you to grab a wall to steady yourself. You can't drive when you are experiencing this type of dizziness as it can cause you to get into an accident. So you must then rely on others. You need assistance sometimes just to get back to your chair when it hits so suddenly that you feel as if the whole world is spinning out of control and the rug is being pulled out from under your feet. For three years I spent three times a week going into the Emergency room of the local hospital due to falls occurring from this dreadful disease. Ending up with minor sprains or even twisted ankles, sprained wrists, severe concussion/terrible headache (from hitting my head) or even a broken finger at times. At this point I almost gave up on having a normal existence and began wearing a home alert button around my neck to call the ambulance to my house, when I was alone, in case I fell and couldn't get up. I even had to have home health come in so someone would be here in case I got dizzy while I was in the shower, which happened at least fifty percent of the time. It was a dreadful way to live. Then I had TMJ surgery on my side that had the affected Menieres ear (where I lost part of my hearing due to Menieres) and the dizzy spells lessened. "Wow" I thought this is great. After eight months of only having small spells that lasted only five to six minutes. Instead of two hours to four days in length like before. I asked the doctor if he felt I could go back to work. I went back to work again. It felt great to work again.

Then about a month ago. BAM! Menieres reared it's ugly head again. And now I can no longer perform my duties at work as my work requires my use of sticking patients with needles and bending over. I can not with good conscious injure a patient. Therefore, I found a need to resign. I am devastated. Now I must once again struggle with this confounded invisible disability in which little is know as to what causes it. Not only am I plaqued by dizzy spells but by a variety of other aches, pains, my migraines have also worsened dispite the medication I am on, I have insomnia, and I am also continually fatiqued. My doctor has sent me to a specialist for testing for other auto-immune diseases such as lupus or fibrmyalgia. I got myself off of SSD while I was working and was proud of that fact. Now, I must go back on until it can be controlled again.

Many people in society do not understand nor think that you have should draw Social Security Disability if you don't seem to have a problem they can see. arAuto-Immune disease e such an illness that many people have no understanding/concept about as most are typically invisible until they have flare ups.I know their are alot of disabilities out there that society believes are all in our minds and that we are faking. Just because they are not visible like strokes and paraplegics etc. However, we must somehow educate society on the lesser known diseases and disabilities known as auto-immune or invisible in order for them to have an understanding of what we are undergoing. I hope by writing this in hopes of educating people about auto-immune diseases. I also hope to educate and make the public more aware that there are "real people" that are in "real need" due to "true, unseen disabilities" that are not trying to take advantage of the system. Some wish they didn't have to rely on Government Assistance for help, because in most cases it's not as much as they could earn if they were actually working. When I worked, during the time my Menieres was in remission, I made nearly three times what I had been receiving on SSD and brought home twice what I had been receiveing on SSD per month. Therefore, my lifestyle was of a much higher standard and I was much happier and not at all depressed. I still have hopes that I will again get everything once more "under control" and one day be "back to work."