Tag Archives: rare genetic disorder

My brilliant Doctor, part 2

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I must tell you about yesterday at the beautiful Emory Campass in Decatur, Georgia. The neurologist report was actually good. He has finally learned that I am sensitive to medication and did not go off on a wild tangent trying different drugs.

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I was actually so happy. It was the first time since 2010 that I received a good report from this guy. I could have kissed then cute little old man. Just adorable. 

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Then, came our second appointment for the day and those words no woman should ever have to hear. There are 2 areas showing on the right side. We are unsure of what one is, but the other appears to be cancer. We need to do a need to do needle biopsies as soon as possible to get some answers.

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We added this to all the other treatments I have scheduled through the next month. I only have a few scheduled: close neck ultrasound, kidney workup and ultrasound, MRI of the brain, MRI of left knee with possible surgery,  MRI of breasts, and now needle biopsies in right breast. I have a busy month of probing and proding.

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Would anyone like to change places?

My Brilliant Doctor

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I’m a little frustrated. Heading to the Neurologist office in am. He is the one that likes to experiment with different drugs to control my symptoms. I recently had to come off a drug he had prescribed, so I’m curious to see what he wants to replace it with. I’m not ready for permanent Zombie-land, but I do need some relief. We’ll see, I need to quit stressing over what he wants to do.

After our visit with him, I’ll be headed to the boobie department for a test and see the (if the test says I need to). I’m hoping we can squash the breast cancer issue tomorrow afternoon. All this hurry up and wait junk is driving me nutty. I need to give it to God and stop worrying.

Find your Voice

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Today has been a bit of an eye opener for me. I had a fairly decent day. Some so so news from the doctor and got to do my favorite thing, SHOP! I love to shop and window shop. They both relax me. If I can’t buy anything, I get the extra exercise.

Today, my shopping trip involved my mother. While out with mom for shopping and lunch, I finally realized why she can make me mad at the drop of a hat. Since the brain surgery, my voice has not been the same. Talking is a struggle at times. I had a good singing voice and I can no longer sing without scaring the neighborhood cats. It’s like my attempts at running, you do not want to see it. My singing, well, you really do not want to hear it. For years, I couldn’t sing a note, but since attending church and singing regularly. my voice is slowly returning. Still not good, but better.

Well, while mom and I were out today, she attempted to finish every sentence I started and talked over me every time I tried to start speaking. She is just attempting to be helpful and not let anything cause me further stress, but what I need to do is talk to her and the rest of my family about letting me speak. I may speak slowly, but give me a chance. Take the time to listen. The old me is still in this body and I have a voice I want to use.

Mom even took a pen out of my hand today to put the cap on for me. I couldn’t believe it. When I left rehab, they told me a few things to keep in mind; keep moving and if you don’t use it, you’ll lose it. The ground rules about me will be coming out in a few days. The time has come to get everyone on the same page!

 

 

Insomnia versus Zombie-head

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I have no trouble taking a nap during the day, but I have been up doing housework, running errands, shopping, and/or exercising.Most days, all the above. I get tired easily during the day.

As the day comes to an end, I cannot turn my head off to save my life. My sweet hubby is next to me sawing logs. The dog is at our feet snoring in tune with Barry. Hear I sit, typing up a storm. The universe does not seem to be lining up for me tonight.

You’d think with some of the medication I’m on, I’d be zonked out cold with everyone else in the house.  Mom is even out for the night.

Dad has trouble sleeping, as well as both my sisters. I usually can nod right off, but not tonight.

I had an adverse reaction to one of the drugs I was on and of course, my brilliant doctors have decided to play with my medication again. I call my neurologist brilliant, because he told me he is and that I’m lucky to get to see him.

I can’t wait to see what he wants to replace it with. Baclofen was working wonderfully and my brilliant neurologist wanted to see what would happen if I came off it. I was back on the drug within a month, but now suddenly, my lower extremities resemble those of an 80-year-old woman.

I truly do not like taking the drug, but it took some of my pain away and didn’t give me ‘Zombie-head’. It had other side effects that were pretty miserable.

Now they will be looking for a substitute. I guess this is just part of the plan and I do not need to question it. I need to take one day at a time, read my Bible and pray for patience. A few sleepless nights won’t hurt my too, too bad. After all, I can stay in bed all day if I want.

Living with a Rare Genetic Disorder Part 2

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mermaidbrunetteHuge reality of living with a rare genetic disorder, is that you get to know a lot of doctors. I’m enclosing the list I have to keep up with regularly. I’m surprised Barry and I get anywhere when we have a scheduled appointments.

                 MM900283642Primary Care Physcian

                 MM900336585Neurosurgeon

                      MM900282885Neurologist

               fishyNeuro-oncologist

               teddybearitchdrkOtolaryngolosist

               funnyladybug081906Neuro-opthamologist

              bearkiss2Opthamologist

                butterflybug3Orthopedist

              beeani0822Chiropractor

             sickbugs Endocrinologist

              gofishy2General Surgeon

              MP900412070Gynecologist

                purplebutterflyGynecologist-Breast Health Specialist 

                MM900283822Geneticist

                Dentist

              0511-1006-2819-1529_Toothache_Cartoon_Character_clipart_image Oral Surgeon

               0060-0505-2317-5248Gastroenterologist

               MM900336468Psychiatrist

              MP900433140  Cardiologist

That is only 19, but at my appointment this week, it was suggested that I locate a Nephrologist and Dermatologist for routine visits. That will put my court up to 22, I believe. These are just the doctors I see, I did not include Barry and Mom’s doctor’s that are part of our monthly routine.

Between church and visiting doctors, no wonder I’m tired. This is the first time I have actually written all of them down. Honestly, I am a bit overwhelmed.

With Cowden’s Syndrome, the important thing to remember is to closely monitor you health and keep up with yearly test as ordered. Missing one appointment  could mean a major health issue, the life or death kind.

I‘m not ready for such, but if the good Lord calls me home, I’ll be in his hands. My life is in his hands always. I’m learning not to question what God’s plan is for me. Just to put my trust in Him and things will be okay. I’m getting there, Lord….working on the fear of the unknown at the moment. It can get scarey!