Update on Being a Long Hauler and Disc Surgery

A long hauler is a person who had the Coronavirus and continues to have symptoms. I am improving slowly but surely. I still have shortness of breath with exertion and I sometimes wake up gasping for breath. I am cooking now with my awesome hubby helping me clean up. He still has to do the laundry and other chores because I get short of breath easily. It's confusing to me because I can cook but folding clothes causes shortness of breath. Who knows??

I have been cleared to have my disc surgery. I was so excited. I've been using a pregnancy pillow (picture below) to prevent me from rolling on my back while I am asleep. Sometimes it works.

When I went to my doctor to get the final clearance.  I showed her a bump in my groin area thinking it is nothing serious. She exclaimed, "Oh Ms. Landry, you have an inguinal hernia!" I asked her what the treatment would be. She answered surgical removal. Panicking,  I asked, "But it can wait until my disc surgery, right?!"She paused and said," Hmm, I would think this would take precedence." 

I just blurted "What else can go wrong!? Screw my life." Tears flowed in frustration and disappointment.😢

She said, "I am going to refer you to a general surgeon who does this kind of surgery. He is great and will not do surgery until he really has to." I have an appointment Tuesday.

Ironically, the day after, my orthopedic surgeon called to schedule my back surgery. I told her what was going on. She said, "Boo, you've been through so much. I'm so sorry. Call me after you go to the surgeon and I wish you luck."

So that's my life for now. 

Until next time....

Don't have C.O.P.D.

Hey Everyone,

I hope everyone is safe from the fires, floods and hurricanes. Here in South Louisiana we've been getting downpours but nothing to complain about.

My pulmonologist retired. I saw him two days before he left. He was awesome. He will be missed.

So I had my GP refer me to a different pulmonologist in the same city I live in. My former pulmonologist was in my hometime about 50 miles one way. Since alot of my doctors in my hometown have been going to something else or retiring I've decided to get doctors closer to me.

After 6 months of miscommunication my GP told me I had an appointment with my new pulmonologist October 16. She had warned me that it would be a long wait. She also stated the new pulmonologist wanted an x-ray. So I went have the x-ray done.

When my GP received the x-ray results she said it showed emphysemic changes. This gave me anxiety and depression. 

In the middle of August, the pulmonologist receptionist called and asked if I could go in the next day.

I like my new pulmonologist. He asked me who told me I had C.O.P.D. I couldn't remember for the life of me. He said according to the x-ray and my lab work my GP has done, I do NOT have C.O.P.D. I have asthma! I asked him if he was sure. He said yes. He also said he doesnt believe I have emphysema although he could see why the radiologist interpreted it that way.  He did an Ige lab work which was also normal.

My pulmonary function test was 68% which is good for me considering part of my lung is gone and my asthma. He said I seemed to be doing good and continue meds. He wants to see me in 6 months. 

I am trying to remember who told me I had C.O.P.D.

Oh well, anyway..have an awesome day.

Until next time.....pray for those affected by the crazy weather.

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Physical Therapy

I went for my follow-up two weeks ago with my Neurologist Neurologist Nurse Practitioner. She started asking me questions. Most of the answers were on my chart. Anyway, she said they were concerned about my falling and balance. I reminded her that before and after the Ritalin and Welbutrin, I didn't fall a lot and my balance, well I have Cerebral Palsy. DUH! (Okay, I left out the duh verbally.)

She insisted I see a Physical Therapist to help with my balance, get orthotics and some kind of percussion vest since I have a history of pneumonia.  I haven't had pneumonia in ages. Probably because I take the pneumonia shot. So to make her happy I agreed to be evaluated by the PT.

The staff and PT were awesome. However, when the PT came get me she was walking behind me with her arms out on both sides of me to catch me if I fell. It made me uncomfortable. I told her don't do that. She said, "I just want to catch you if you fall." I asked her to stop and told her if I fell I would just get back up. She backed off a little.

I really like my PT and I know she was just concerned.

After a slew of questions, she tested me. I laughed at some things and I have to admit I gave her trouble until she told me she was testing my balance and risk of falling. 

Here are a few tests of many: 

She made me stand up from sitting with and without the support of my hands  I was able to stand with support no problem. Without using my hands I did it but it was unstable. No surprise to me.  Sometimes if I stand up from my couch or bed I'll fall back down two or three times until I finally find my balance.

She made me stand with my feet close together and stay still. I was not to move. That was a challenge because I kept moving. I would sway. Then I had to do it with my eyes closed. That was funny but it makes you realize how important your sight is to balance. I kept swaying.

Another test was walking up steps. There were three steps. She told me to walk up the steps without holding the rail. Yikes! I felt iffy but determined. I went up one step fumbled, regained my balance and walked up the other and so on with same results. Then she told me to walk down the steps. That was fairly easy. Of course, when I got down to the bottom and stopped I woobled but I didn't' fall.

I had to stand up and lift each leg. That was hilarious. That didn't go so well but I didn't fall.

She told me my ankle tendons were tight and could be a factor in my balance. "SIGH" When I was a child I had the surgery to lengthen the tendons to loosen them.

I was sitting while she was putting things in the computer. All of my life I have been able to put my foot a certain way on the floor and my leg will shake. I can stop it anytime I want.  It's not because I'm nervous, it's just something I've done all my life. It is sorta habit sometimes but it feels good.

She informed me it was clonus and not do that. My next post will be about that subject and I promise it will be very soon.

All in all, she said I was at Medium risk for falling. Actually, I thought it would be high.  She suggested I visit her twice a week for six weeks. I grudgingly agreed.

Today is the end of my second week. I realize I can walk backward. Slowly and carefully. PT has benefited me a little. Most of it I think that it just been my life for 55 years. But I understand that since I'm older (If I hear that word one more time I'm gonna scream!) I'm prone to broken bones or serious injury if I do fall. It's frustrating to hear professionals tell me what they THINK they know about me. They just read the paperwork, if they actually DO read it, that I have Cerebral Palsy. They assume things because I have CP that doesn't pertain to me.

I was so tired last week because I was running around working on another project plus PT. I'm not used to being on the go 2-3 times a week. Last week was 4 days.

I will fulfill my promise I'll go six weeks but I will be done. I may take some exercises to strengthen my muscles etc but I shall go along with my life like I've always done.

Oh! My PT didn't think I needed a vest. Thank you very much! I already have orthotics in my shoes. They asked if I had any assistive devices. I told them I had walker from surgery but it is in my junk room.  I refuse to get any canes or other things like that. Now if they suggest a scooter to go around the yard I would certainly go for that but she said no.

Until next time, tell someone you love them.

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Team Effort

In December, I received a letter from Medicare that they would no longer pay for Nuvigil or Provigil for me because I did not have narcolepsy, shift work sleep apnea or obstructive sleep apnea.

I have taken this drug for many years to help with my excessive daytime sleepiness.

I went through the appeal process but I was denied every time. My pulmonologist who is also certified in sleep disorders also wrote a letter to Medicare and they continued to deny it.

I went 2 weeks without my medication and I was listless, sleepy, unfocused, depressed and in a fog. I looked online to see if I could get help but I did not qualify. I searched a few online pharmacies but I was afraid to trust them and sometimes the cost was just as expensive.

In the meantime, I went to my family doctor for leg cramps. If you've been a follower you know I have spastic/ataxic cerebral palsy. If you have just begun following me, well now you know. 😃 I've dealt with cramps all my life. However, they have become worse to where it nearly made me cry. Cramps would wake me up and had sleepless nights walking them out during the night. I had been on Xanax for years for cramps but they obviously stopped working. She did blood work and my electrolytes and iron were abnormal so she had me drinking Gatorade and taking iron pills. But cramps continued although follow up blood work showed potassium and electrolytes were fine.

I also mentioned to her about my dilemma with my excessive daytime sleepiness medication. She referred me to a neurologist who also specializes in sleep disorders. It was a few weeks to wait for my appointment.

In desperation, I went to my pharmacy and asked if they could help me in decreasing the price from $600/month until I saw the neurologist. They sympathized with me and they gave me a really nice discount. I thanked them graciously but I did not want to put them in a hole either. They are a  Good Neighbor Pharmacy in my small little town. I actually cried when they told me the special price for me.  I thanked them and told them they had no idea how appreciative and thankful I was. The assistant came and hugged me and said it was okay. That's what they were there for, to help customers.

You would never get that from chain pharmacies such as CVS, Walgreens or Walmart.

When my neurologist appointment finally arrived I liked him and his staff immediately. They were proficient, nice and understanding.

He prescribed Valium at night for my cramps. He said he gave it to his patients with Cerebral Palsy with cramps like I do. Thank God it worked. My cramps are a lot less.

He started me on Ritalin for the excessive daytime sleepiness. It worked some but after 3 hours I crashed and it zapped my appetite. I made myself eat but I was beginning to lose weight.  I had worked so hard to get to 90 lbs. I struggled for 1 month or so. It just wasn't working for me.

I called his office and he changed the Ritlan to Wellbutrin. Although Wellbutrin is mainly used for depression it does help some people suffering from excessive daytime sleepiness.

Not me! Ironically, I became depressed. I felt that black hole swallowing me up. I was sleepy and felt useless all of the time. I was also falling and my balance was worse. I tried for a few months before I called the neurologist again because I know some medications take a while to get into your system.

Although I felt like a pest, I notified his office. They were concerned with my depression and falling as was my husband. As I waited for a callback, I decided to make a Plan B for in case they couldn't help me.

I contacted my pharmacy again and asked them what would be the maximum price they could give me without putting themselves in the hole selling me the Provigil without insurance. I was thinking I could handle up to $150. It would be tight but it would be worth it. They gave me a very nice price I could work with. Bless their hearts.

A few hours later my doctor's nurse called and said they called Medicare and they approved it. A few minutes later my pharmacy called and said it was approved. I thanked them and told them I appreciated the hard work they did. When I went to pick up my medication I hugged the pharmacist. They told me it was a team effort with the doctor and them. About 4 days later I received a letter from Medicare stating that the drug has been approved and the prior authorization is good until 2019, then it will have to be prior authorized again. 

The day I took my Provigil I became myself again. I am functional, not falling, alert, awake and happy.

I'm trying to think of what I could give to my pharmacist and neurologist and staff as a token of appreciation for their hard work and team effort. I know they say it is their job and it is what they're there for but I want to show them how appreciative and thankful I am. I'm thinking of a small fruit basket with a thank you note. Everyone should like fruit right? 

Do you have any other suggestions?

Thanks for still following my inconsistent blog. I do appreciate all of you.

Until next time...Be thankful for your health and the medical team who cares for you!




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Infected Foot Biopsied

I finally had a visit with a dermatologist for my foot. The problem is described in an earlier post. I've been struggling with it for 9 months. I went to my family doctor twice for it and got two different diagnoses and treatments. The treatments made it a little better but it kept recurring.

Recently, my foot has been so bad that when I put socks on, my skin sticks to it and it just pulls the skin off. I can hardly hobble on the other foot because that foot is also starting to have the rash. 

When Dr M., my dermatologist came in, she looked at my foot and exclaimed, "Oh baby, your foot is severely infected!"

Shocked, I asked, "What?!"

She repeated it was severely infected and we needed to find the cause. She turned and started rambling to her nurse. 

Then she turned to me and asked me how long I've had this. I told her about 9 months but it wasn't this bad the whole time.

She said she needed to biopsy it and do a culture on it.

Whoa! Wait a minute! Did she say biopsy? I thought okay I'm going to have to come back.

I asked when. She said, "Now." 

I watched the nurse filling a syringe with a big needle. I am not afraid of needles but it was just freaking me out a little. 

I asked her how was she going to do the biopsy now? 

She said she would inject my foot to numb it and get a sample. When she put the light over my foot, she said it was flowing pus.

I know! EWWWWWWWWW! It grossed me out.

Pus? I knew it was drainage but it never dawned on me that it was pus.

All I felt was the sting of the medicine injecting into my foot. In less than a minute, they were finished.

She put me on antibiotics and gave me a different cream.

When I asked for her educated guess what this could be she said she didn't know but maybe psoriasis or fungal infection. She promised that she will find out the origin of the problem and make it healthy.

She put a band aid on the biopsy site. The next day the pain was excruciating.  It's sorta like I am stomping on nails. Sometimes I just want to cry.

Walking on it is just almost impossible. I have ruined so many socks with the drainage and then peeling off the skin as well. I have tried gauze and that sticks too.

I have come up with a solution. It is weird. I have feminine pads, I don't know why. I found them in the back of my cabinet. I have the maxi pads with the wings and pantyliners. I took the maxi pad and cut in half. Then I put them together taping it to my soles of my feet for the night. During the day I have the pantyliner taped to my foot It slides off and I have to retape it, maybe I need new tape.  But I figure it protects my foot from the ground and keeps the cream on. I don't plan on going anywhere for the next few days so I don't have to wear shoes.

There is never a dull moment in my life medically for sure.

Mystery Pain Diagnosis

I am tired of seeing doctors. I am tired of needing and taking medicine.

I am tired of spending money on doctors. I am tired of spending money on medications. 

I am tired of my body wearing down. I am tired of hearing, "It could be worse." I am tired of being told yet another ailment is due to my Autoimmune disorder or Cerebral Palsy."

It was my mantra to my doctor yesterday when I finally broke down and went to find out the source of my mystery pain and foot skin problems.

After my mantra he attempted to be empathetic and indicated he understood. No he doesn't. He means well. No one understands. Some people have an idea. But you never know unless you are experiencing it.

As I have told him in the past I get so tired of life. It seems to be too much to wish for one month, much less a year, to be with no new medical woes. When I have finally accepted, and learned to tolerate what I have, another diagnosis is sprung. 

How much more can a person's human body, spiritual and emotional ups and downs take?

Here are the ones I live with day to day: 

Cerebral palsyCP)

Polyglandular Autimmune Disorder Type II (PGA-II) with includes adrenal insufficiency and HYPOthyrodisim, 

Chronic Venous Insufficiency (CVI) 

Gastric reflux disease (GERD), 

C.O.P.D./Asthma/Chronic Bronchitis. 

Add chronic upper respiratory infections, chronic urinary tract infections and bouts of this and that in between, it gets tiring. It gets frustrating. It gets irritating.

He stated the obvious. "As we age, our bodies get worn and tired? I responded, "My body has been through the wringer and back. And he came back with, "But you are still here and that's good."

My first fleeting thought was 'Really'?

But I slightly processed his response for a few second, then declared, " I should not be alive. At age 30, I honestly did not think I would live to be 51. "

Encouragingly he responded, "But you are. Something wants you to be here. It could be worse."

I told him I know but I don't want to hear that. I am so tired of hearing.  He knows me so well he let it rest.

I reminded him I fought all these years because I wanted to make sure BabyGirl had her mother until she was at least out of high school which God answered that prayer plus more. I am actually going to be alive to see her graduate college unless something unknowing comes up and I die.  I know she can now live her life if something should happen to me. She was always my rock. She was the sole reason to keep going and fight it through,  I know now she will he able to survive if God finally takes me.

He was genuinely listening to me and I saw concern on his face.

I reassured him that I am not in the suicide mode, then jokingly added I get in the mode from time to time and  wish he would give me something just to give me a peaceful death.

After reiterating the purpose of his oath he took in saving lives, he questioned of the possibility of the need of an antidepressant. 

Smiling, I said, "Doc, did you not hear my mantra?!" 

He then sighed and started examining me. Yea, he knows the time to quit.

 I have another yucky wet rash on my foot. The heel is wet and raw. I want to scream when I put in water, Actually, Hubby was in bathroom with me when my foot hit the water, I was hanging onto the shower rail barely hopping on one foot raving using unladylike expletives along with "OW OW Ooh" Remember, I have limited balance on two feet much less one. THANK GOD we have a shower seat. As soon as my butt hit the seat I only had to contend with the bottom of foot not getting wet.

I have been having to walk on my tiptoes. (Sorry MOM & DAD! I know you paid for surgeries to not do that very thing! Hopefully, it is temporary.)

A few days ago I plucked off what seemed to be another layer of skin that had grown. It was ABSOLUTELY GROSS.  When I stepped it hurt and itched. 

It feels like I'm walking on a spiked lily pad.  

Just one week ago, I had finished a regimen of Prednisone Doc sent over the phone for what we thought was a recurrence of Hand and Foot Disease  I have had 3 times in the last 9 months.

I love him because he is down to earth.  When he looked at my foot he grimaced like I do when I look at it. I have to use a mirror because I can't move my foot in the position to see it.  This time he said it is Eczema which is associated with my immune disorder, asthma, hay fever and C.O.P.D.

"BIG SHRUG AND SIGH" BLAH! BLAH! BLAH! ARGH!!

We then turned to my mystery pain. The mystery pain has waxed and waned.

In addition, one night I had severe chest pain but not like a heart attack. At first I thought it was pleurisy or I fractured a rib from coughing. (I have done that before!)  It was excruciating pain. It nearly immobilized me. It hurt when I moved. It hurt when I exhaled. It hurt when I laughed. (Of course Hubby would inadvertently make me laugh.)

Then there was a different night when my right eye had a tic. It went on for two days but disappeared just as fast as it appeared. The tic came in a series of 10 tics in 20 seconds. Yes, I counted and timed it.

Doc pulled, pushed and squeezed my arms and neck. He succeeded in making the dull pain I had worse. He said the pain could be from a number of things. He rattled off arthritis, herniated discs, Pinched nerve, spine spurs, and degenerative disease,

His best guess without tests is a pinched nerve and arthritis. I had already suspected some arthritis. 

Here is a simple explanation. We have nerves throughout our bodies. Nerves are surrounded by connective tissue, muscles, bones, cartilages and tendons. Sometimes too much pressure on these squeezes causing a pinched nerve. In my case, I have tight muscles from my CP, and something happened that my muscles are clamping on the nerve. Maybe I moved wrong or laid on it wrong. Or my muscles are just tightening more with  the age process. He also thinks the arthritis may also be from my CP.

Exasperated shaking my head, t "No! No! No!  Don't say that! I am on a CP group and I read many people have arthritis and such because of the long term effects of CP. I only have a mild case and was relieved I didn't have to deal with that although I had compassion for them. I don't want to be another statistic!"

He continued to remind me that the way I walk and stand puts more pressure on my body and I've done so well but things change. He apologized for having to give me that news. 

It actually makes perfect sense. 

It'll take time to accept it.

Sort of resolved, I asked him the treatment of all my acute medical woes. He gave me another regimen of Prednsione. Good thing is it should help both my eczema and maybe help inflammation in my joints and muscles I may have. He also gave me a prescribed cortisone cream. (It hurt like hell to put it on but the itching is gone, for now.). He showed me some stretch exercises for my head, neck and arm I can do sitting down. He said a massage could work. I said I love massages but I have to pay him and for my meds and after that my pocket book is too low to pay for that luxury. We agreed Medicare wouldn't pay for it.  However, I can get one free, my Hubby loves me that much! I also need to get back on my Wii Fitness. I used to take Yoga but it is too darn expensive here and the hours suck.

The last thing he suggested was trying a gluten free diet told me things I don't eat on gluten diet. I blurted, "Geez doc! That's what is making me gain and sustain my weight. No rice? Seriously?"

He informed me to take it slow and there are products that are gluten free. I commented,"Yea and as always healthier isalways more expensive. To take something out of a product costs more." He concurred and said, "Think about it." We knew we could have discussed this further but I think he was afraid it would send me further in my downward spiral at that moment.

I have and researched. I'll see what I can do. "SIGH"

Sorry this is long but I had to get it all in. But now we all know what is possibly the problem, I have the drugs and exercises. All we can do is wait and see.

Gums and Choppers

I hate going to the dentist. Period.

I rather go through a gynecological exam than the dentist. It is true. Going to the dentist is right on top with shopping at Walmart for the things I least like to do.

Until about 10 years ago I had been going to a dentist (Dr G) since my teeth came out as a toddler.  When he retired I had to look elsewhere. It was a couple of years before I found another one.

No dental insurance is the main reason of the lapse.

About 3-4 years ago, I found a dentist (I'll call him Dr P).  I realized how outdated my previous dentist was. By the way my parents and sister and her family had gone to Dr G just as long and their new dentists found all kinds of problems. So all those years we were giving Dr G money for less than adequate dental care.

Through the years Dr G had mentioned offhandedly on occasion that I had periodontal disease and suggested I waterpik and floss which I did. Since he didn't press further, I forgot about it. After all, my trust was in this dentist believing he was taking good care of my mouth and if something was terribly wrong he would inform me.

Dr P gave me the same diagnosis in addition to having to get every cavity redone along with plaque build up. The only reason he gave me was due to poor oral hygiene which I knew was not true. I used a waterpik, flossed and brushed my teeth at least twice a day every day.  

Dr G as well as my pulmonologist had told me my inhalers and meds were factors of gum disease and plaque build up. But again,they said it so nonchalantly that I didn't give it any further thought. Maybe I should have.

Dr. P's staff made me feel so embarrassed. They were  condescending and made me feel like a two year old being reprimanded. They spoke like I was going to lose my teeth soon, if I didn't do what they told me I had to do (Mainly have all the work done and pay them big bucks). Every time I went they 'needed' to do a debridement" which was 100 bucks. I told them I was paying this out of pocket and I was on a fixed income. I couldn't be doing this indefinitely.The next time they gave me a "plan". It was a series of debridements and replacing all my cavities etc etc. The final price (or so they say) was about $2500.

Then I started noticing the receipts didn't jive with my payments. I inquired about it several times and the girl was a nitwit. I talked to someone else and they manipulated the billing. My Hubby and I sat down and did the accounting ourselves and it didn't add up to what they had. It seemed they were double billing and not subtracting my payments. Hubby was an accountant in the Air Force so I know he knew what he was doing. Although math isn't my strong suit, I know basic arithmetic. They actually owe me but I know I won't ever see it. In return I will never refer them to anyone if someone asks.


So I just stopped going. I was frustrated, wary of dentists and depressed. I continued to water pick and brush my teeth.


Two years later Hubby put me on his dental insurance after we got married. It had been a year since he put me on but I just didn't want to deal with a dentist so I procrastinated.  I was afraid I was going to go through the same frustration.

With Hubby's nudging and an intermittent toothache, I decided to put the insurance to use. After all, dental care is no out of pocket twice a year for cleaning, right?

I did some research online with the providers that were on our insurance. I found two dentists, Dr C. and Dr R. I heard and read good things about both of them. I called Dr R and they couldn't take me for 2 months.

Dr C has a website. I filled out an inquiry form. They responded within hours (Absolutely amazing for businesses I've dealt with via online) and said they could see me in two weeks. I called and made my appointment

Yesterday was the dreadful day, as I call a dental appointment.  Did I say I hate the dentist?

The office called me about 1-1/2 hours before my appointment and asked if I could go in early. I said sure. So off I went.

Their office is in the same area where my old pulmonologist used to be. He was one special man. It brought back memories. Weird how memories just pop up like that. Maybe that will be another post in the future.

Anyway, i entered and the receptionist greeted me and took my paperwork. Within 5 minutes another girl called my name. I'm sorry I can't remember her name and she was so nice.

I am really lousy in remembering names.

I followed her through a maze of halls as we chitchatted. But I did note that she was walking WITH me. It is a pet peeve of mine when I have to follow someone such as a nurse or waiter and they blow ahead of me so fast I can't keep up. I have literally stopped a few times until the person realized I wasn't behind them and they had to come back for me. It embarrassed them but I think they got the message.

So it was looking good.

A little information: I have been coughing up a storm for about a month now. Its a dry irritating cough. My voice goes in and out as the weather changes. When I stay still  the cough is better. But if I talk, eat, drink, move in any way, just a tad, I cough. Sometimes my coughing spells induce shortness of breath. I It's sorta 'normal' with the type of weather we've been having. I chalk it up to my C.O.P.D./Hay fever/Asthma.

Kinda sad and crazy for a cough to be "normal" eh?

Anyway we finally arrived at a room and she did x-rays. Gawd I hate x-rays. My mouth is small. They put the tool shown below in my mouth.

She had a white square of gauze attached to it and shoved (gently) into my little mouth. It was not an easy task. Alot of maneuvering was done to place it. Then I had to bite which causes my already poor gag reflex go awry as part of the tool is like a small breeze . I have learned to deal with such things but I promise it is not fun. My reflex was to gag full force. It hurts everything in my mouth. The assistant kept asking me if I was okay. I shook my head yes and with hand gestures told her to just do it and get it over with.

When I was a child my Mamma would say, "Just as well let them do what they gotta do and get it over faster. Because we are not going anywhere until it is done" I also knew I would get a butt whipping if I didn't cooperate. I could cry but not sob and scream like I've heard and seen other children too.

The girl was very compassion and patient. She had to stop for me to cough a couple of times . When I need to cough and try to keep it in it is worse when I finally let it go. I was a good girl and got through it.

Another assistant came in and replaced the other one. She was also nice, and compassionate.  I was beginning to feel comfortable and relax more. We talked about my medical history and drugs. I told her how my gums bleed every night when I brush and water pik. I reminded her that I take Aspirin as well. Then she said it...

She said she saw it in other patients with Autoimmune disorders and that in addition to that I have many other medical problems that has to do with my teeth and gums. She also said my inhaler and meds didn't help matters but we gotta do what we gotta do. I told her I knew about the periodontal disease but it just seems to stay, no matter how much I brush, floss and waterpik. I assumed it was the Aspirin causing me not to clot, which it is doing its job!

She explained to me everything I needed to know that NO ONE has ever told me. She asked if I thought about going to a Periodontist. I remember my mom bringing me as a child but otherwise no. She said we'll see what the dentist has to say. But she said for people like me with autoimmune disorder that could be a good thing so they could help me stabilize my gum disease.

She asked me who my previous dentist was. I know medical professionals don't like to say anything against their peers. I saw her grimace. I told her my experience with Dr P. She listened and shook her head like she has heard it before. After I was finished, she said, "OH I know what you are talking about. I've had patients from him." That is all that was needed to be said. I wasn't all that crazy after all.

As she started cleaning my teeth, the cough began.  I apologized. She said, "Don't worry about it. I know its your C.O.P.D." Finally, a person in a dental office who actually read and took in account my medical history and medication list. She emphasized that they had many patients with C.O.P.D. and autoimmune disorders.

She cleaned my teeth and debrided my gum with intermittent delays due to my coughing. She said it looked like I had good oral hygiene. She reiterated the autoimmune disorder is a factor in making it difficult to have healthy gums and teeth.

After she was finished the dentist came in. Dr C reinforced what her assistants said.  I had a cavity but we need to get the support (the gum) of my teeth stabilized first. She asked me if I would be willing to return in 2-4 weeks after swishing with an antibiotic rinse so she can see what kind of improvement occurs. And then we would go from there. Our main focus is to get my gums stabilized as much as possible. It may never be totally normal but we can get it in a good place. I was okay with that.

The way Dr C and her staff treated me and talked to me I walked out feeling reassured. My teeth and gums hurt like hell and they irritated my gag reflex to the point of me wanting to gag for the rest of the day but I feel like I am in a better place. I also had to pay a fee for the debridement and antibiotic rinse but I can handle $37.

I still hate the dentist but I think this one will make it less painful in every sense.

Meanwhile, my Hubby had been having a toothache and went to his dentist about 4 times in six months. The dentist took x-rays and kept saying there was nothing there he could see.

Well part of his tooth fell out and he went back. Finally his dentist sent him to an oral surgeon which we had to go to Baton Rouge 75 miles away.

When the oral surgeon did a CT scan he saw immediately what was wrong. He asked Hubby who was his dentist. He emphasized that the problem should have been found way sooner. He seemed a little disturbed.

Even I noticed something was wrong looking at the CT. Didn't know what it was but knew it was an abnormality.

What happened was part of the tooth worked its way into the gum, pretty much eroding the gum and root..making the tooth climb up into his SINUS cavity causing an infection. The had been having trouble with his nose stopped up and his snoring had worsened. Now we know.

We were royally ticked off. Understand, he went to a different dentist than I.  We were like what the hell is with all the dentists around here?

So Friday he is going in for an extraction of the tooth. Then he will need an implant.  The surgeon said if it was caught sooner, all he would have had to undergo was a root canal.

As I write this I am thinking, going to a dentist can go any way. They could lie to you about needing all kinds of treatment or they can miss the whole problem altogether. We understand Doctors/Dentists are humans and make mistakes. But Hubby went numerous times for the same problem. It should have been caught.

We have dental insurance but like most they cover only a portion except for the 'preventive'  So our tax refund is already spent.

But hopefully we are on our way to healthier choppers! I can't remember how I got that term for teeth...but anyway..until next time....

Thanks for dropping by.

Another Diagnosis to Add to my Long List

During my 49 years in this crazy life I live I have learned to make my own list of previous medical history, surgeries and medication that that I keep on my computer. I update and bring it to a new doctor I see

Yesterday I went to my post-hospital follow-up visit with the Endocrinologist I was referred to while ill in the hospital last month. I thought I was just visiting him for a simple follow up as I considered my diagnosis was a mere awful bug causing gastritis etc. However, unknowingly I walked into what would be a very overwhelming experience.

He announced that I had Polyglandular Autoimmune Syndrome. As he presented my lab results to confirm the diagnosis he explained what it was. I heard "adrenal gland not working" (I knew it was 'insufficient' but never realize not working at all.), "ACTH way over the top", "no stressor" etc. He told me I needed to be on yet another drug for the rest of my life, gave me another prescription for Vitamin D, and advised me to get a Medic Alert for in case emergency because when I was admitted I was on the verge of entering the other world and it could happen again. He reassured me that if I take my meds, things should be okay.

My cuz has a friend who is a doctor asked her to explain it in more lay terms and she broke it down for her. So here it is

Polyglandular means multiple glands. Autoimmune means the persons' immune system is fighting their own body tissues. The adrenal gland is responsible for the body's adaptation to stress. If it fails there's a "system crash" when people get stressed or sick that can be life threatening. The thyroid gland controls metabolism. If it fails you get multiple symptoms including weight gain, fatigue, and slow heart rate. The heart can fail if thyroid function gets low enough. Heart failure can kill you. Type 1 diabetes in this disease is caused by antibodies to the pancreas which destroy its function. The person requires insulin or they die. People with polyglandular autoimmune disease usually require lifelong supplementation of multiple hormones to prevent death from multiple possible sources. Fortunately there are drugs available to replace all of the hormone deficiencies your cousin is likely to have, so if she stays on her medications and follows up with her doctor she should do okay."


As the saying goes, life sucks then you die! I am usually cool, calm and collected and accept what is given to me and move on. However, I have noticed as I get older, I get depressed and just wonder, how much more can my little body take?

To add to my stress, when I went to pay, my Debit card was denied. My bank is at it again! I went there and said my peace. Monday, I am going opening a new account at another bank and take my money out. That in itself is another story I may tell another day.

Everyone have a wonderful weekend. PEACE!

After two weeks and 5 phone calls, I have received my records from the Crippled Children's Clinic. Eighteen years of my life were compacted into 130 pages of progress notes, surgical reports, x-ray reports, payments and correspondence.  Most were progress notes,  telephone calls and correspondence from social worker to insurance back to clinic. What a circus that was!

The first thing that I realized was I almost weigh the same I did when I was 13. Only a few pounds more. I also had a State Case Number. I guess I should have known that the help was through the state since it was a 'free' clinic.But what can I say I've had a brain fart all my life. "SIGH"

Looking through my records I am  able to get a better timeline of my surgeries and what happened between. I am learning the names of the apparatuses.

I have discovered unknown terms used to describe the surgeries, braces, casts etc  You can bet I am looking them up to understand more!

The descriptions of my my family as individuals and as a family were mostly positive, except for the pyschologist which I was expecting.

I learned that how the costs of medical care has skyrocketed since the disco era.  My dad's income at the time was wide opening. I wish I had the rent and bills they had! I would be living like a queen.

I was reminded of the names of people who came and went through my medical care. It makes me wonder what happened to some of them. Some names I have no memory of them. I can't picture a face to the name and. It frustrates me.

My parents told me stories throughout the years but I think I have a better understanding of what they had to go through to fight for what I needed. My appreciation of their courage and the parents are trifold than before.

There were also pictures they had taken to mark my progress. I was half naked. I remember at one point, my mom telling doc that I was becoming a young lady and the nakedness was going to have to be less. So I wore my panties and balloon undies as they had to see my legs. What I will treasure the most is the pic of my awesome doctor I had. My memory distorted his face but now when I think of him, I can have a clear picture.

I've read all of the 130 pages at least 40 times since I have received them. And each time it brings back a new memory.

I have a plan to take the information, dissect it on some kind of chart like a writer makes an outline.

I know some people have no interest or wouldn't be as excited as I was but I guess I wasn't a nurse for nothing. I always had questions and were interested in medical information. It's kinda like a child in a toy store for me with my records.