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

Carbon Monoxide Facts

Quick Fact Sheet


THE HIDDEN DANGER OF CARBON MONOXIDE POISONING

1. Headache

2. Dizziness

3.Irritability

4.Confusion/Memory loss

5.Disorientation

6.Nausea and vomiting

7.Abnormal reflexes

8.Difficulty in coordinating

9.Difficulty in breathing

10.Chest Pain

11.Cerebral Edema

12.Convulsions/Seizures

13.Coma

14.Death


SIGNS AND SYMPTOMS

Often, several members of the same family or those in a given building will complain of the same symptoms. Children are thought to be more susceptible to carbon monoxide poisoning than adults. Some people may not suspect that CO poisoning is occurring until major symptoms appear. Carbon Monoxide poisoning can mimic gastroenteritis (nausea and vomiting). Other manifestations may cause the appearance of what may appear to be a neurological or psychiatric disorder. High risk groups include infants, the elderly, pregnant women, and anyone with a previous history of cardiac insufficiency or chronic obstructive lung disease.

MEDICAL CONSEQUENCES

Cerebral edema (swelling of the brain) is also a common result of severe carbon monoxide poisoning. This life threatening condition entails the destruction of brain cells by compressing them into themselves within the cranial compartment. Drugs that are normally used for the treatment of cerebral edema, like Dexamethasone and Mannitol, do not seem to be of assistance in the treatment of CO induced cerebral edema. Studies have shown that cerebral edema caused by CO poisoning can cause delayed neurological problems that involve the "higher" or cognitive functions, and may cause a Parkinsonian-like brain syndrome.


CAUSATIVE FACTORS

Other incidents have been reported in apartments where gas stoves are being used for heat. In at least one case, carbon monoxide poisoning was caused by the use of a charcoal grill within an apartment's bathtub. More than fifty percent (50%) of all carbon monoxide incidents occur within homes. Twenty percent (20%) of all incidents occur in businesses of various types.


TREATMENT

1.Move the victim(s) to fresh air, this will only relieve immediate symptoms of acute poisoning, remember if you have chronic poisoning that is low level and that has gone on for some time your deteriation may be gradual so it could be some time before you notice.

2.Activate the Fire/Emergency Medical Service System, if victim(s) are experiencing any symptoms, if the fire department is called and they have the equipment ask them to record the CO PPM (parts per million of carbon monoxide in the air). This could be used to help your doctor diagnose your illness, also should you decide to pursue a legal claim may well help your legal team.

3.Monitor for respiratory problems, get a COHb test to check for carbon monoxide levels in the blood.

4.Ventilate the affected area

Upon arrival, it is recommended that Basic Life Support (BLS) (e.g. EMT) personnel should:


1.Evaluate for respiratory tract irritation, bronchitis, or pneumonic.

2.Administer humidified 100% oxygen by tight- fitting face mask. Assist ventilations as needed

3.Monitor Vital Signs

4.Monitor level of consciousness

5.Consider early transport to a Hyperbaric Oxygen Chamber for severely poisoned patients

6.Place the patient in a position of comfort and keep them warm

It is recommended that Advanced Life Support (A.L.S.) (e.g. Paramedic) personnel should:


1.Further evaluate the respiratory tract for dysfunction or possible compromise - intubate and assist ventilation as needed

2.Draw a blood sample for Carboxyhemoglobin analysis

3.Provide 100% humidified oxygen, do not delay administration of oxygen while performing blood sampling

4.Administer normal saline or other crystalline parental fluids at 2/3 to 3/4 of normal maintenance rates

5.Prepare for the possibility of generalized seizures in severe cases. Give diazepam (Valium) in 2-10 mg. doses (as needed) to terminate and control seizure activity

6.Perform electrocardiogram monitoring of the patient, be especially aware of ventricular ectopic beats and heart blocks. EKG changes seen most commonly in CO patients are ST segment depression, T-wave abnormalities, atrial fibrillation, and PVCs.

7.Any patient found unconscious, seizing, or with EKG changes and with an associated history should be treated as a severe carbon monoxide poisoning until proven otherwise

8.Consider direct transport to a Hyperbaric Oxygen therapy facility, with Oxygen being administered enroute, for severely poisoned patients

9.If the patient's history suggests any possibility of CO Poisoning, treat him/her as though they were exposed

PREVENTION AND CONCLUSIONS

Many lives could be saved and much disability prevented if citizens could learn to recognize and prevent the dangers of carbon monoxide poisoning. Preventive efforts such as checking furnace flues, chimneys, and vents could help to alleviate the hazard. The use of good common sense in not using open flames, ovens and other appliances not intended for heating, could reduce the number of carbon monoxide related incidents. It is also recommended that homeowners have their complete heating systems checked before every heating season.
Only by being aware of the peril, and understanding the nature of the hazard, can we help to prevent unnecessary exposures to deadly carbon monoxide. By understanding the mechanism of injury, we can be better prepared to treat the effects of this toxic product. In this way, it is expected that the number of people who succumb to carbon monoxide's "deadly clutches" can be reduced.



from the Carbon Monoxide Site

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.