Good morning my readers.
Good morning to me.
Good morning to my Blog.
I am really trying to stay positive today…
I was awake before the alarm, but was not feeling very well. A little nauseous with a side of slight migraine. I called in late originally… Noted my right eye is still bothering me as well. Putting the old glasses on again.
Just as I was getting up to prepare myself for work, I received a telephone call from my neurologist. My late start turned into taking a whole day off.
All my blood tests came back negative, except for one: paraneoplastic antibody panel. It showed an antistriational antibody level was extremely high in my blood stream. Stated I needed to have an MRI to rule out Thymoma; the Thymus gland which helps fight off infections in children.
OK, so I scheduled the MRI and completed it this afternoon. Told myself that as soon as I got home, I would figure out how to spell these fancy medical words and find out what the hell they are talking about. You know that saying, ignorance is bliss? They weren’t lying.
Paraneoplastic antibody panel is a test to see if there is a condition where cancerous cells in your body affect your Central Nervous System – Almost like an autoimmune response to these cells that don’t belong. The Paraneoplastic panel can be done on Serum and CSF (Cerebral Spinal Fluid) This Panel includes the following Screens (They are very expensive tests)- Some people have this disorder before cancer or tumor is even found in the body.
Antistriational antibody may lead to the recognition of undiagnosed myasthenia gravis and thymoma.
Thymoma is an uncommon tumor, best known for its association with the neuromuscular disorder myasthenia gravis. Thymomas may be removed surgically. In the rare case of a malignant tumor, chemotherapy may be used.
- Surgery is the mainstay of treatment for thymoma. If the tumor is apparently invasive and large, preoperative (neoadjuvant) chemotherapy and/or radiotherapy may be used to decrease the size and improve resectability, before surgery is attempted. When the tumor is an early stage (Masaoka I through IIB), no further therapy is necessary. Removal of the thymus in adults does not appear to induce immune deficiency.
- Prognosis is much worse for stage III or IV thymomas as compared with stage I and II tumors. Invasive thymomas uncommonly can also metastasize, generally to pleura, bones, liver or brain in approximately 7% of cases.
- Patients with stage III and IV tumors may nonetheless survive for several years with appropriate oncological management.
- Patients who have undergone thymectomy for thymoma should be warned of possible severe side effects after yellow fever vaccination. This is probably caused by inadequate T-cell response to live attenuated yellow fever vaccine. Deaths have been reported.
Other reported disease associations are with acute pericarditis, Addison’s disease, agranulocytosis, alopecia areata, ulcerative colitis, Cushing’s disease, hemolytic anemia, limbic encephalopathy, myocarditis, nephrotic syndrome, panhypopituitarism, pernicious anemia, polymyositis, rheumatoid arthritis, sarcoidosis, scleroderma, sensorimotor radiculopathy, stiff person syndrome, systemic lupus erythematosus and thyroiditis
Myasthenia gravis is an autoimmune neuromuscular disease leading to fluctuating muscle weakness and fatigability. It is an autoimmune disorder, in which weakness is caused by circulating antibodies that block acetylcholine receptors at the postsynaptic neuromuscular junction, inhibiting the excitatory effects of the neurotransmitter acetylcholine on nicotinic receptors throughout neuromuscular junctions. Myasthenia is treated medically with acetylcholinesterase inhibitors or immunosuppressants, and, in selected cases, thymectomy. The disease incidence is 3–30 cases per million per year and rising as a result of increased awareness. MG must be distinguished from congenital myasthenic syndromes that can present similar symptoms but offer no response to immunosuppressive treatments.
- The hallmark of myasthenia gravis is fatigability. Muscles become progressively weaker during periods of activity and improve after periods of rest. Muscles that control eye and eyelid movement, facial expressions, chewing, talking, and swallowing are especially susceptible. The muscles that control breathing and neck and limb movements can also be affected. Often, the physical examination yields results within normal limits.
- The onset of the disorder can be sudden. Often symptoms are intermittent. The diagnosis of myasthenia gravis may be delayed if the symptoms are subtle or variable.
- In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs. The degree of muscle weakness involved in MG varies greatly among patients, ranging from a localized form that is limited to eye muscles (ocular myasthenia), to a severe and generalized form in which many muscles – sometimes including those that control breathing – are affected. Symptoms, which vary in type and severity, may include asymmetrical ptosis (a drooping of one or both eyelids), diplopia (double vision) due to weakness of the muscles that control eye movements, an unstable or waddling gait, weakness in arms, hands, fingers, legs, and neck, a change in facial expression, dysphagia (difficulty in swallowing), shortness of breath and dysarthria (impaired speech, often nasal due to weakness of the velar muscles).
- In myasthenic crisis a paralysis of the respiratory muscles occurs, necessitating assisted ventilation to sustain life. In patients whose respiratory muscles are already weak, crises may be triggered by infection, fever, an adverse reaction to medication, or emotional stress. Since the heart muscle is only regulated by the autonomic nervous system, it is generally unaffected by MG.
That was an awesome way to wake up today. What do you think?
Let me share my thought:
Wow, why could it not have been menopause and medication causing these symptoms?
After texting my closest friends, I had to call Heather. She follows my blog to keep up with my life and they last thing I wanted her was to read about it before hearing it from me. She is the one person who can help me laugh at myself and my situation.
I made an attempt not to cry, but I couldn’t hold back. Being my soul-sister, she was shocked by the news and then came back with, “Isn’t chemotherapy where you lose your hair?” Yea. “You get to buy wigs, how awesome is that?”
You know what? She was right. I can buy a rainbow of wigs: red, blond, black. I can even get one with curls. Lord knows my hair doesn’t hold a curl. Then we started talking about all the cool things cancer patients get: yoga, massages, etc. She made me look at the positives of the situation. Before you know it, I was laughing at myself and my situation, again. Who knows, maybe I can join to Make-A-Wish Foundation and finally get the affair with Dwayne Johnson, aka the Rock if you didn’t know who that was.
I LOVE YOU, HEATHER!
I am meeting with my friends at 7pm at Yarussos for a fish fry. Us Catholics and our rituals. I am going to enjoy my time with them. I think at this point I have earned the right to a glass of wine and tons of fried foods.
Blessed with the most amazing friends. Justin, Sonya, my 2nd mom Barb and my goddaughter Brishaun had a wonderful dinner and shared happy moments. It was awesome to be in their company.
Following dinner, we took the camaraderie back to Sonya’s where Mike, Nancy and Matt joined in with the fun. I had to take Justin home to assist with his grandpa before Juan and his friend came over. It was just like old times sitting around and laughing over stuff.
Our antics use to be every weekend, but I had not partook in a couple of years because of the journey I have been going through. It was great returning back to jubilant times. It is exactly what I needed tonight. As I mentioned, the old be is coming out of this cocoon I have been living in more and more each day. Now I just pray my days are not shortened by a stupid cancer.
Should this turn out to be cancerous, I will be my normal self – a fighter. I will not leave this earth to a stupid disease. I will leave on my own terms: old, kids grown and watch over my grandchildren. I am throwing my hands up to God and remind him I am not afraid of death, but please do not let it be a premature one.
Do you recall that I mentioned that there was a co-worker following/reading my blog? Well, it was sort of a co-worker but I only have 5 of them on my Facebook page and I couldn’t imagine that a) they would be reading my blog, b) would go to my manager over my blog, c) would attempt to get me in any type of trouble. Then you need to ask yourself, who were you trying to hurt by sending a venting blog to my direct report? Them as a manager? Or, me as an employee? All it accomplished is that someone had their feelings hurt and it was never meant to be the case.
There was a huge clue dropped with LinkedIn was the suggested site that this blog referred to. In my LinkedIn site I believe that my legal name is being used since it is a professional website. So, I did what I do, I investigated. The person involved is another manager in our area. I removed them from my LinkedIn Connection, not even sure how the connection was made in the first place.
The reasons why I could not be brought to task for my Blog page:
1. I disclosed that I have a Blog when I first began writing one for the public.
2. My Blog does not mention the company that I am employed.
3. The Blog is in a pseudonym, not my legal name – in case of stalkers.
4. I did not say anything derogatory about anyone mentioning their names, only a generic job title.
5. The only connection that could be made between me and my blog was my photo.
It must have been real frustrating for someone who took their time to investigate to see if I could get in any type of trouble for writing my Blog. I am sure they contacted the Legal Department just to be sure. Not that I find this hilarious, but unprofessional and a waste of company money, and that it was pointed out to an individual to hurt their feelings.
To keep you in the loop, I had a scheduled 1:1 for our annual review. Midway through our session, a senior manager came to sit in. I thought it was strange at first, but then again, I know at one point this manager wanted to get to know the team individually. This manager was only there to mediate while my direct report explained how they personally felt about what was written. They understood that there was nothing that could be done, but ask that I respect their request for privacy.
As I mentioned yesterday, what I say or vent on my Blog is not meant to hurt anyone’s feelings and that is why I keep it as generic as I do. It is my way of expressing myself and keep my sanity. I did apologize for hurting my manager’s feelings indirectly as it was never my intention. I assured them that I have the utmost respect for them, and appreciate them as my manager. I will attempt to tone down when I am discussing things pertaining to work out of respect for my co-workers. However, I do maintain my freedom of speech.
I am only sharing this because it is my Blog and I can, but also to remind myself and others to Blog responsibly. Keep in mind that although another may not be directly pointed out, but they may stumble across your Blog and know that it pertains to them, or “it’s a small world after all” = someone may know you and the party you are blogging about.
Now back to our general daily craziness.
Oh yea, it is way past my bedtime. Told you I was having fun. I may have to sit on the couch for a moment, take my medication and lay down. Then again, I may even stroll back through Sonya’s so I can continue on a happy note instead of being home alone to let the darkness sink in.
Hope everyone has had a wonderful night.
- Thymus gland surgery a serious one (independentmail.com)
- General has Thymoma, Too: Two Buns, One Pet Store (rabbitreporter.wordpress.com)
- Paraneoplastic antibody screening (medrants.com)
- Today is Rare Disease Day (wendythewanderer.wordpress.com)
- Blogging for Money? Nope. (daniellechanmktg.wordpress.com)
- Myasthenia Gravis: Analysis of Serum Autoantibody Reactivities to 1827 Potential Human Autoantigens by Protein Macroarrays (plosone.org)
- Organ-Specific Autoimmune Disorders (everydayhealth.com)