Kathy's Journey

January 11, 2012

2012-01-11T09:48:00.000-08:00

It's Wednesday and I have absolutely no appointments which is nice. I woke up at 6:00am - fed the kids (cats) watered the lawns and went right to computer. No coffee - no breakfast. Have not taken my meds yet. I woke up to extremely muscle pain in arms. Felt like I was in a fight. Perhaps with a ghost? I don't know. lol I did finally change my pain patch last night which was a very good thing.

I can't decide what to do first. I have much on my to do list. Bake cookies for Tom - make candles for Donna, Gigi, and girls in the dental office. Need to get email off to Kathy J. regarding thank you note. My sis is coming down next week to attend a quilting show in Ontario. She wants me to go with her. I will have to see how I feel.

I sent an email to my daughter last night and I pray she will be receptive to it. I love my daughter very much and she is very intelligent and a smart cookie. She has been a superb caregiver to our grandson and I certainly appreciate that. She has a lot on her plate - Chris is now 17 yrs old and was not expected to live to see his 5th birthday. Chris got bacterial meningitis and during the night at naval hospital, he went into cardiac arrest. Chris responds only to stimulation. He is confined to a wheelchair, has a feeding tube, must wear diapers. He has had several surgeries over the years and I must say...my grandson is determined to stick around and I am happy about that. I know he can't talk but he talks with his eyes in my opinion. I love him a lot NO MATTER what and so does my husband. We are blessed!

December 29, 2011 - Thursday

2011-12-29T13:27:00.000-08:00

Well, I am still catching up on sleep and relaxation from the Christmas weekend. I baked for two days and was on my feet. I enjoyed it and got all my cookies baked and delivered. I do pay a price but it's ok. I gave my neighbors on both sides of us a plate of cookies. I hope they enjoyed them. On Sunday there was a knock on my door and it was Christine from next door. She and her mom bought me a gift that surprised me. After she left and later on that evening, I opened it up. I started crying because I was so overwhelmed. Beautiful lotions and a beautiful necklace that I will wear. Little Sofia who loved my mother-in-law and has now become a part of our lives, brought me a gift. A beautiful t-shirt with flowers on it. It's exactly what I would wear. I have become very close to Sofia, her mom and grandmother. I love our neighbors. I have learned so much about diversity since moving to Hawthorne.

I grew up in a pretty upper middle class area of Torrance. Majority of neighbors I knew growing up were caucasians. Here in Wiseburn, we have folks from Colombia, Mexico, Guatemala but many have been here for years. They love America. And are hard working people who have their own businesses.

Day after Christmas, our two nephews popped in as did Tom's brother George and his g/f Kristen. It was SO good to see everyone. Tom bought a nice platter from Costco and we enjoyed the company. Kristen's sister Nancy later joined us and they were driving to LAX to pick up Kristen and Nancy's other sister who lives in Budapest, Hungary with her children and spouse.

I need to go check in with my buddies on IDA (Invisible Disabilities Association). Many are without families and like me, they deal with people who just do not understand how sick they/we are. It's hard for me to make plans and always keep them. I deal with so much fatigue. Today, I am just cold and can't seem to get moving. Sherri Connell, who founded IDA along with her husband Wayne just lost her 52 yr old brother. He died in his sleep. Our hearts go out to them.

I did have my eyes checked last week and the Fuchs is not being very aggressive which is good. A few cells have popped up but nothing serious. Next on my list...mammogram which I have not had in about 5 yrs. I always worry a bit because my maternal grandmother had breast cancer and I have been on Estrogen since 1993. Keeping fingers crossed.

Going to say goodbye and be back tomorrow. Take care and I wish people would make comments. If they are looking at my blog.

December 23, 2011 Christmas Eve Day

2011-12-24T12:21:00.000-08:00

I am going to make it a point of getting in here to write in my blog each day commencing TODAY! We hope.

I am suppose to be making cookies but my feet are so cold and I am so tired. I just took my medication that keeps me alert throughout the day. Let's hope it works quickly.

Last night I was out delivering a gift card to a young mother who is having a tough time. She has three children and is single.   Since moving to Wiseburn (Hawthorne) last year, my husband and I have gotten involved with our neighborhood watch program. I approached one of the captains and asked if they needed any help with typing etc.   Well sometime down the road, Bill contacted me and asked if I would be willing to type the minutes up and I said "Yes".   One of the sponsors of the Wiseburn Watch is Kathy J. She is a realtor, and a very good one from what I have read.   She also heads up a program each year called Adopt-a-Neighbor. This is the second year we have given to Kathy's program. Last night was the first time I had met Kathy, her daughter and daughter-in-law. She met us at this young mother's home. Kathy also help contribute after I contacted her.   I am so glad we did this and yes, I was very fatigued and worn out but I persevered. Kathy J. was on crutches after having knee surgery.   There is nothing more satisfying than when a person is having a real tough time and appreciates what you have done for them. I LOVE helping people out as does Tom (my fantastic husband). We are BIG on charities and love to give back. You never know when you might need help.

I got up this morning only after Max, stood at side of my bed and whined. He is such a baby. I got my kitchen cleaned up but can't seem to get motivated. I am just not feeling all the great today emotionally and physically.

Right now, I am estranged from my daughter and that hurts me a lot. She thinks it doesn't but it does. Sometimes we hurt the people we love most, and I think this is the case with my daughter. I wish I could be what she feels I should be in her eyes. I wish she could accept me but she can't. I feel she is angry that I cannot help her with my grandson.  Chris is 17 yrs old and a big boy now. He is still in a wheelchair, diapers, fed thru tube and a very big boy. I love him SO MUCH. His legs alone for me are hard to hold up. I had back surgery in 2008, and I have all these problems so how can I help? I can't. I pray so hard that life would be easy for my daughter. That she would not have to continue dealing with all of this BUT if the truth be known...Chris would never get the "good care" he gets from his mom from some institution. I APPLAUD my daughter for taking very good care of Chris. She is a remarkable woman BUT I ONLY wish that she would love me for me, and understand that mom can do only so much.   I also adopted Max before we moved to the house in October 2010, and he is still in that puppy stage. He has to be crated when I leave for drs appts.. I don't like leaving him caged up for more than 4 hours and my daughter does not understand this.   I have lost two or three bluetooths to Max. He ate them. Just bought a new one this past week. He has destroyed so many pairs of shoes. What a stinker he is. If I could, I would have a doggie door but I also have two indoor cats.

Well, let me bring this paragraph to a close. Long story short...I wanted to see my daughter today and bring her favorite cookies. She told me what I could do with them. Yeah, it hurts. I am always extending the olive branch only to get kicked in the teeth. It's never good enough. I stress about all of this, I get sick and I usually end up in bed. I pray that my daughter will have a good relationship with me before I leave this world. She is 40 yrs old - what do you think? Is it too late? Maybe so. My therapist keeps telling me I need to take care of myself - my needs for once.

Well, I will be back later today or tomorrow. Happy Holidays to everyone   Remember to pay it forward and get your pets spayed or neutered as well as a microchip.

Please visit IDA.

2011-11-12T18:09:00.000-08:00

If anyone is reading my blog, please go to IDA Invisible Disabilities Assoc and read up on what hidden disabilities is all about. Read about Matt and what this poor man is going through. There are MANY more but it is an EYE OPENER. I have not done my video yet but plan to. I want to tell my story. I want people to understand what we deal with 24/7. Read about the vets coming home from war. Take ONE day out of your week and just go through this website.

My mother passed away in 1997 and she had both legs amputated and two open heart surgeries, She died at 66. Too young! She had vascular disease.

I have a grandson whose 17 yrs old and was not suppose to make it to his 5th birthday. He got Bacterial Meningitis back in Norfolk, VA where my daughter's husband was stationed aboard a nuclear sub. They kept sending my grandson home with a fever. He was just 3 mos old. At the time, there was an outbreak of Bacterial Meningitis. Chris went into cardiac arrest and only responds to stimulation today. He has a feeding tube, No spleen, and is in a wheelchair. It's HEARTBREAKING. He has had several bouts of pneumonia and has come close to death again. Someone is watching over him. He is a MIRACLE. I am an advocate for BOTH invisible and visible disabilities.

Look at the work that Wayne and Sherri Connell are doing along with their Board Members. It is astounding. You must visit IDA. Thank you SO much.

Invisible Disabilities Association

2011-05-30T16:05:00.000-07:00

Wikipedia on Invisible Disabilities

I have been involved with IDA for awhile. I found it on line, and was glad I did. I joined, and quickly started posting in the community section. I discovered that so many were dealing with the same issues as I. I have met some truly wonderful people.

Wayne and Sherri Connell founded IDA. Sherri was diagnosed with MS as well as Lyme disease. She also has Multiple Chemical Sensitivity. Sherri looked good on the outside and certainly did not look sick thus this is how IDA was born. They wanted to educate the public and all of us are so thankful they created this wonderful organization. It's so nice to talk to others who are dealing with the same issues or similar. Many have MS, Diabetes, Brain injuries, Fibromyalgia, Lyme Disease etc etc.

It's very frustrating when people look at you like you are crazy when you tell them all the health issues you are dealing with. I ended up in the emergency room of our local hospital, and the nurse was shocked when I told him all that I was dealing with. He then took a look at my list of medications and was just blown away. This happens a lot believe it or not. Another problem is when you pull into a handicap parking space - often people will come up to you and just about spit in your face because they think you are trying to pull a fast one. "You're not disabled" blah blah blah. I/we have to explain to these yo-yos. Very very frustrating for sure.

If you have the time take a look at IDA. Read about Sherri's story. There's so much good information on the website.

Living with Diabetes (Type 2)

2011-05-15T17:10:00.000-07:00

I never thought in my wildest dreams that I would get diabetes. I watched our father deal with it. Our father did not take care of himself or his diabetes. He was an alcoholic which only added problems to the disease.

Dad was always hungry, and I know how that is because I also deal with that. I told myself years ago that I did not want this awful disease. I went to a diabetes class with my mother because I had to learn to inject my father with his insulin. I had a pretty good understanding of Type II Diabetes when I was diagnosed with it.

My glucose has a tendency to drop to some terrible low numbers. I get the shakes, become very agitated, and my brain just does not work right. It's scary for sure. It has dropped to high 40's before. So I really have to watch it and make sure I eat small meals throughout the day and not skip a meal. I usually tell people when I am agitated and why. I do not want anyone to take it personal or think they did anything wrong. It's me!

Out of five siblings, my youngest brother and I are the only ones with diabetes. I was shocked when I was diagnosed with it as I had NO symptoms. I don't drink nor do I smoke which is a good thing when you have diabetes. My numbers are often all over the place (up and down). Stress is my worse enemy and it does not go well with diabetes. Infections can affect numbers. You can take good care of yourself and still have problems with numbers. I recall reading an article about the great Billie Jean King (tennis player). Billie was diagnosed with Type 2 and who would have thought? Very active - watches what she eats but she was not surprised with the diagnosis as it runs in her family.

Diabetes is no fun at all and it takes work to keep it in check.

May 15, 2011

2011-05-15T09:08:00.000-07:00

Well, it has been awhile since I last updated my blog. I have been dealing with so much - not to mention the continuing pain and health issues.

I went to see my Internist recently and we discussed my fatigue problems. I told her that I had fallen asleep as I sat at a red light back in October 2010. We were moving at the time. My friend kept me on the phone until I got home to the apartment. I was SO thankful I made it home safely. It would devastate me if I hurt another human being because of my stupidity.

My doctor told me I was a candidate for sleep apnea surgery because I have tried everything else including CPAP. She threw out one more thing to try. It's called Provigil. This drug is for people who deal with sleep apnea, narcolepsy and is suppose to keep you awake and alert. I am down to my last pill and I must say, it does not always help me. I have been known to fall asleep after taking the pill. I have not told my doctor this yet but I will in time. I plan to get presciption refilled today.

I have been trying to get to bed at same time every night and watch what I put in my mouth. No chocolate!! There are some mornings I feel so good - so refreshed. Yet, other days I am falling asleep still. It's frustrating and I end up crying. I am angry. So darn angry at all this crap that has taken over my life.

People do not understand because they see me with my hair done-makeup on and dressed. Now, dressed means yoga pants/sweats and a decent t-shirt. How can Kathy be ill? How can she have all these problems? All these health issues? Damn it, I wish I knew and so do the doctors. All I hear is, I am a "complex patient" Much of it is genetics they say. My parents had lots of health issues. Our father and his siblings all had diabetes. Our mother, and all her siblings had cardiovascular problems. Mom had leg and feet problems as do I.

I feel I took pretty good care of myself. I was into running and working out in the 80's. I eat my veggies but I do have a sweet tooth. Yes, I admit I love my chocolate and will never give it up.

When our parents died in 1997, I basically fell apart. Not sayin my siblings didn't but for me, it was a terrible time and I do not think I ever recovered. It affected me in a different way by attacking my body. Boy did it attack. I ended up being diagnosed with the Fibromyalgia, CFS, Diabetes (Type 2), hypothyroidism, Venous Insufficiency (legs), Peripheral Neuropathy, carpal tunnel (both wrists), degenerative disc disease, sleep apnea and of all things, an eye disease called Fuchs Corneal Dystrophy. Is it any wonder why I am frustrated and angry?

I did get involved in Invisible Disabilities Association http://www.invisibledisabilities.org on line. This is a wonderful organization founded by Wayne Connell whose wife has MS and Lyme Disease. I have met so many wonderful people. Wayne and Sherri do wonderful things by educating the public regarding diseases that are invisible. They make all this happen by taking donations so if you read my blog, please visit their website and make a donation if you can. No pressure please but it would be SO appreciative.

We moved in October...

2010-12-22T19:49:00.001-08:00

Well, we finally made the move. It was very difficult for me but I manage to get through it. We are settled in our new home. We purchased my husband's family home and we did do some upgrading. It's looking real nice and we are both very happy here. Neighbors are wonderful.

Still dealing with ongoing fatigue. Again, I wear my CPAP and I think I am getting sleep but I still find myself falling asleep at keyboard in the morning, afternoon and evening. It's scary. During our move, I fell asleep at the wheel while sitting at a red light. My friend kept me on the phone until I got home.

Tired all the time... August 25, 2010

2010-08-25T20:36:00.000-07:00

I wish I wasn't so tired all the time. I have horrible bags under my eyes. I sleep with my C-PAP and you would think I would get good sleep but alas, I do not. Could be my Fibro, Diabetes, Hypothyroidism that is causing it but it''s hard to tell. I just know that I have to lay down on couch and rest a lot.

We are getting ready to move. We bought my husbands mother's home and it is our first home. I do not look forward to moving at all. Well, let's say, I look forward to moving to a nice home but not the move itself. Lots of work. I need to clean cabinets - put stuff away and just the thought tires me out.

I hate being ill and I hate living with pain. It's not fun at all and I wish I could shout it to the world. I really do try hard. My therapist wants me to attend her seminar this weekend in Marina Del Rey and I do not know how I will do. I conceded and said "Yes." I paid upfront. I may leave after a few hours but we shall see. I am going to try and sit through it. I love my therapist and she is really helping me.

July 21, 2010 and August 18, 2010

2010-08-25T20:14:00.000-07:00

I had my right eye done on July 21, 2010 and immediately I could see so much better. It's truly a miracle. For years, all I could see was the outline of faces...everything was a blur. So, you can imagine how thrilled I was that I was able to read the bottle of conditioner in the shower. Crazy I know but because my vision was SO BAD, I had to take a black felt pen and write a very large "C" on the bottle of conditioner so that I did not think it was my shampoo. Now I can see it crystal clear. I will tell you I cry for joy...

August 18, 2010 I had my left eye done and Dr. Joshi told me he hoped my vision would be better in that eye but could not really promise 100%. It is my lazy eye. Well, it's been a week since my surgery on left eye and I saw the doctor today and I am not seeing all that well yet. They have to go in and laser off some tissue that has grown already at the "capsule"... Good news is...my corneas look good. They have not been bothered by the surgery thus far.

As you all well know, I have an eye disease called Fuchs Cornea Dystrophy and will need cornea transplants in future. Often when you need cataract surgery - this escalates the Fuchs. All my doctors are keeping an eye on it though. I am dealing with some of the best doctors and I am SO grateful to them.

All I would like to say is, get your eyes checked. Just because you aren't being bothered by them does not mean all is well. I had NO idea I had that eye disease until my optometrist noticed a little gutatta. One just never knows

Cataract Surgery

2010-07-16T22:52:00.000-07:00

On July 21, 2010 I am having cataract surgery on my right eye. Not too long ago, I met with a wonderful doctor up at Jules Stein Eye Institute. His name is Richard Casey and he is a specialist in cornea transplants. My regular opthalmologist and I decided it was time to probably see about having a transplant. Dr. August sent me to Richard Casey.

Dr. Casey felt I was not quite ready for a transplant but believed that cataract surgery was due. My cataracts were bad and needed to come out. You have to be very careful when a cataract patient has Fuchs as well. It's very touchy -

Dr. Joshi is doing my surgery. Dr. Joshi is Dr. August's partner. He believes I will be fine as does Dr. Casey. So, Wednesday is the big day and I am excited. We are doing the right eye with the astigmatism first. Later, they will do the left eye.

I will keep my blog updated. I promise. Bear with me.

Fuchs Dystrophy and Cataracts

2010-07-16T22:51:00.000-07:00

Fuchs Dystrophy and Cataracts

UCLA Vital Signs: Advances in Corneal Transplantation Techniques a Boon to Patients

2010-04-27T13:19:00.000-07:00

UCLA Vital Signs: Advances in Corneal Transplantation Techniques a Boon to Patients

Is it a bad thing to laugh?

2010-04-20T16:24:00.000-07:00

So, is it so terrible to laugh when you are sick? I don't think so. I am involved in another website and one of the posters (name with-held) told me I was too perky blah blah blah. Shall I roll over and just die? NO. If the mood strikes me, I laugh. I want to laugh more. I do not want to always be in pain and down in the dumps. I do not want to feel sorry for myself..

If the truth be told, I feel like crap most of the time. My stomach is a mess these days. I deal with a lot of anxiety. I am tired so much. Never knowing if it is my sleep apnea, chronic fatigue, diabetes, hypothyroidism, fibromyalgia that is causing the fatigue. This is frustrating - VERY FRUSTRATING. I wish people understood where I am coming from.

My legs feel like I have 50-75 lb weights attached to them. Dragging me down - I still pick myself up and go somehow. I have NO idea where I get the energy or drive. I just know I do not want to GIVE IN to this junk. I try so hard to stay afloat.

I wish my life were different. I am starting to look older and it drives me crazy. I want to look nice for my husband. I care how I look. I prided myself on my looks in the past. I always looked pretty good. I found a wonderful man in 1985 and married him. He is 8 yrs younger than me. Again, I am looking pretty tattered these days but I do not have that stamina, I just don't. I cry, BUT I still find time to laugh in the midst of my crazy life today.

Appointment in May

2010-04-20T16:21:00.001-07:00

I called Jules Stein and have an appointment on May 12th to discuss cornea transplant. I am very happy about this. It's long overdue. I promise to report back and will be much better at keeping my blog up.

Finally making the call to Jules Stein

2010-03-29T21:07:00.000-07:00

I saw my regular eye doctor and we have tried everything we could to help my eyes and we finally decided last Friday that it was time to go to Jules Stein Eye Institute. I am making the appt tomorrow to see Dr. Richard Casey whose a cornea specialist. I hope they can get me in as soon as possible. I am terrified but I have confidence in the doctors. It;s the unknown that I fear the most. Losing my sight completely is scary even though a cornea transplant will help me. Something could go wrong and I need to be realistic about that.

I just pray the doctor will do the surgery now...

March 5, 2010 - Update after doctors appt.

2010-03-05T22:59:00.000-08:00

I had an appt with my Internist yesterday. It was my 3 month check up. I went in armed with questions this time. I was diagnosed with severe Obstructive Sleep Apnea back in 2007 after undergoing a sleep study test. I have been faithfully using my CPAP machine however, I am having a tough time staying awake during the day. If I am moving around, I'm okay. Only time I fall asleep is when I am sitting. I have fallen asleep at the computer numerous times. It is embarrassing. Dr. DeLilly and I both decided it would be best to be re-evaluated by the people who initially did my sleep study. In other words, do another sleep study and double check my CPAP machine. I could go on medication to help me stay awake but right now I am on too much medication as is. I would prefer to be re-evaluated. So I wait to hear back from Advanced Sleep.

In the mean time, I sit here worrying about my eyesight. I have no idea what the future holds. I guess I am scared of the unknown. I know I will need a cornea transplant but also worried that it may not take. I go see my regular eye doctor on March 11th. In the mean time, I found a group here in Torrance, CA who do work on Fuchs' patients. They perform cornea transplants. I am going to talk to Dr. August about going to them. I need a cornea specialist that is close by and Wolstan and Goldberg are.

My diabetes seems to be under control which is good. I took an A1C test yesterday so we will see.

My eyes are constantly hurting. I try not to complain. I sincerely try to stay very positive about all my chronic pain and illnesses but it does get hard. I am so human. My fatigue is just awful. I can be on the phone and actually start to doze off.

So many people are worse off than me and I try to keep that in perspective. I really do-

Invisible Disabilities Advocate

2010-03-02T07:27:00.000-08:00

There's a wonderful group that I belong to which is on line - IDA This group has been a life saver for me. When you are dealing with several chronic conditions you need a good support system. People who understand what you are going through. It's not that you need sympathy because that's the last thing we all need. We just need to feel like we matter in this crazy world of ours.

People use to care about each other but that is not the way it is any longer. Joining a group does work and can be very helpful. I have come to realize that there are more people out there that are worse off than me. I have never felt sorry for myself. I have questioned why all these things keep happening - the many different diagnosis.' I am sure others look at me and think I am full of malarky - how can this woman have all these medical issues but the truth is, I do! I chalk it up to bad genes and the doctors usually always agree with me. They take a look at my family history and that usually sends up a red flag.

Invisible Disabilities Advocate was started by Wayne Connell. His wife Sherri has MS as well as Lyme Disease. He realized that there had to be others out there who were just like Sherri, who needed an outlet and a sense of community. Almost all IDA members are homebound. How great it is to talk to someone in another state who is dealing with the same issues as you are. Don't get me wrong, not everyone sits around - moans & groans about their ailments. It's just healthy to discuss what is bothering you about being sick. Better to get it out than to have it explode. IDA has a diverse group that I find fascinating. We have men, women, and young people. Many have grandchildren - and many have family members who just DO NOT understand what is happening to their loved one. The simple truth, we are sick. We did not ask for this. Who in their right mind would want to live like this?

I'm a huge supporter of IDA and if I had a lot of money, I truly would give it to them because I think what they are doing is fantastic. I applaud this group. I look forward to seeing my friends every day. We may not see each other face to face but you just know that everyone truly cares about each other. It's all good.

Cellulitis again...

2010-03-01T21:46:00.000-08:00

Just got over a case of cellulitis. I ended up going to urgent care as my finger was getting rather swollen and red. Sure enough - I had a staph. I continue to get these and it is so frustrating.

My wonderful sister-in-law was down this past weekend and helped me as I had to soak the finger and keep it clean. The doctor had made an incision to drain the "gunk" - Cindy is trained to do this kind of stuff so she wrapped my finger up real good and waited on me, which was so unnecessary although I appreciated it very much. It was just nice to have her down and visiting.

Better days ahead? We can only hope so.

Mucormycosis - Deadly Fungus

2010-02-28T09:31:00.000-08:00

This has really nothing to do with me but I felt this was important to share. I never knew about this fungus until my dear friend almost died from it back in 2010. I'm talking about Mucormycosis.

Sharon developed this in her sinus area and it had to be surgical removed (tissue). The doctors ended up removing her eye, and all that is left is a gapping hole the size of a golf ball. They removed so much tissue around the eye socket. What is amazing is that they were able to take tissue and skin from other parts of her body and enclose her eye socket until they put in a prosthetic.

Sharon is diabetic - Type I and on insulin. Her glucose was going up and up until it was out of control - than the problems with the Murco began. Her right eye had so much pressure as the paramedics took her to Loma Linda Hospital in California. Sharon was critical. The drs worked very hard to save her and they finally did. Most people die from this. She had a few days where she lay in very critical condition. She wasn't sure this was all worth it as far as living goes. She was in such pain. They had to take her into surgery and remove the fungus and they weren't sure they got it all. They feared it would go to her brain. It had already traveled behind her right eye which they did remove. Tissue was removed as well. Sharon was devastated. Thank goodness they kept her on heavy pain medication.

The doctors ended up removing her eye and all that is left is a gapping hole the size of a golf ball. They removed so much tissue around the eye socket. What is amazing is that they were able to take tissue and skin from other parts of her body and enclose her eye socket until they put in a prosthetic.

Sharon called me and just needed to talk. She knew I would understand how she was feeling. She kept telling her family she was OK when she really wasn't and she just wanted to scream. She called Kathy. Ha! I told her let it out. We talked for one hour and she felt ten times better. She actually laughed and sounded like the old Sharon. She and I have been close as we deal with many of the same medical problems. We understand each other and it's ok. My heart hurts for Sharon because this is not over. The antifungal medication hurt her kidneys. She spent time on dialysis and in the hyperbaric chamber. The chamber basically saved her life. Thank God for the doctors and nurses at Loma Linda Hosp.

Sharon got a computer so she can research things. She has asked me to help her. I hope to bring her to IDA eventually. Sharon was a nurse years ago but had to give it up when she developed a series of medical problems. Please read up on this fungus because I was shocked when I read about it. Thank you IDA friends.
http://www.nlm.nih.gov/medlineplus/ency/article/000649.htm

This is very graphic so do not watch if you have a sensitive stomach.
http://www.youtube.com/watch?v=ZmHkC2JM53c

I recently met a very nice lady whose husband went through this horrible fungus. We met on Facebook. Her husband Greg would like to write a book on Mucormycosis. Greg asked me what I thought and I told him he should write the book. I believe the public needs to understand this fungus especially people with diabetes.

Mark Tatum was the first individual they did a documentary on. They referred to him as the "Man without a Face."

My thoughts are this - this is an illness that needs to be made aware to diabetics - not to scare but to keep them aware of it and what to look out for.

WHAT IS FUCH'S CORNEA DYSTROPHY?

2010-02-17T17:08:00.000-08:00

Fuchs' Dystrophy. Fuchs' dystrophy is a slowly progressing disease that usually affects both eyes and is slightly more common in women than in men. Although doctors can often see early signs of Fuchs' dystrophy in people in their 30s and 40s, the disease rarely affects vision until people reach their 50s and 60s.

Fuchs' dystrophy occurs when endothelial cells gradually deteriorate without any apparent reason. As more endothelial cells are lost over the years, the endothelium becomes less efficient at pumping water out of the stroma. This causes the cornea to swell and distort vision. Eventually, the epithelium also takes on water, resulting in pain and severe visual impairment.

Epithelial swelling damages vision by changing the cornea's normal curvature, and causing a sight-impairing haze to appear in the tissue. Epithelial swelling will also produce tiny blisters on the corneal surface. When these blisters burst, they are extremely painful.

At first, a person with Fuchs' dystrophy will awaken with blurred vision that will gradually clear during the day. This occurs because the cornea is normally thicker in the morning; it retains fluids during sleep that evaporate in the tear film while we are awake. As the disease worsens, this swelling will remain constant and reduce vision throughout the day.

When treating the disease, doctors will try first to reduce the swelling with drops, ointments, or soft contact lenses. They also may instruct a person to use a hair dryer, held at arm's length or directed across the face, to dry out the epithelial blisters. This can be done two or three times a day.

When the disease interferes with daily activities, a person may need to consider having a corneal transplant to restore sight. The short-term success rate of corneal transplantation is quite good for people with Fuchs' dystrophy. However, some studies suggest that the long-term survival of the new cornea can be a problem.

February 5, 2010 - Doctors appts today

2010-02-06T19:57:00.000-08:00

Today I had two appts. May I just add it was pouring rain as well and I was not a happy camper about being out in it.

First appt was at 10:20am and it was with Dr. Kaviani, my vascular surgeon. He explained why he decided not to do any angioplasty back on January 11th. It would have been too risky he stated. I have significant blockage in one of my veins and he felt the balloon would not be safe. What we are going to do is wear thigh high compression stockings for 6 months and at the end of that time, we will decide whether or not to go forward with a procedure called VNUS CLOSURE. Here is Dr. Kaviani doing the procedure for Eyewitness News - ABC Channel 7 here in Los Angeles at his office VNUS CLOSURE The diseased vein will be closed (sealed shut) and blood is re-routed to other healthy veins. I have a condition called Venous Reflux Disease or Venous Insufficiency. One of the symptoms is varicose veins which, I do not have or if I do, they are not visible. My mother had them real bad. So, this is all genetic for me. I do have real bad spider veins and of course terrible discoloration at my lower extremities not to mention terrible pain. I have developed Chronic Stasis Dermatitis in my lower extremities. Because of this disease, I get cellulitis easily which can be fatal. I have had cellulitis twice thus far since 2006.

The other appt for that day was with my Optometrist. My eye doctor wanted me to get glasses and see where we are with my vision and if it has changed. As it turns out, my vision has changed once again in my left eye. I have Fuch's Cornea Dystrophy and we are now discussing going forward with cornea transplants. At least we are talking about it more frequently. Dr. Natsumeda, my optometrist, is very good about explaining to me about my disease actually. Now that my vision seems to be changing, we are going to just get a pair of reading and computer glasses. As it stands now, my left eye seems to be the worse. Both eyes have the disease by the way...

Sometimes, I feel as though my world is falling apart around me but I just need to be positive and persevere. It is very hard though at times.

Update....January 26, 2010

2010-01-26T16:23:00.000-08:00

I have not been at my blog and felt bad about not keeping it up to date. A friend had mentioned she went to it and I thought, "Oh wow,, I have not updated it in awhile." So here I am.

I'm currently being seen by a wonderful vascular surgeon in Torrance, CA. My orthopedic doctor actually sent me to him because she did not like the looks of my feet. I told her they are always purple and red.

Dr. Kaviani did an ultrasound in his office on my lower limbs and abdomen. The tech told me there was something going on because my blood went zipping back down to my ankles. It's suppose to pump back to my heart. I forgot to mention I have venous insufficiency which is a very painful medical issue. I can't begin to describe how painful it is. My legs are red with brown spots and often you can see ulcers beginning to take shape. If I stay off my feet, I do ok. In fact, I'm suppose to stay off of them. Dr. Kaviani decided to set up a venogram and angioplasty for January 11th. I had it done.

VENOGRAM AND ANGIOPLASTY - January 11, 2010

My husband and I were to be at the surgicenter on January 11th at 9:30am, and we did get there at that time. The procedure was to take place at 11:00am. I had to undress and get into a gown. The nurse took more info from me, and then the anesthesiologist came in to talk to me. He told me he would be giving me versed and some Propul to put me out. He could also tell I was having a lot of anxiety/nervousness. He gave me enough to quiet my nerves. They ended up having a terrible time waking me after the procedure. I never had a chance to talk to the doctor nor did my husband. My husband was up at the hospital with his mother as she was real sick and on a ventilator. So, I left the sugicenter not knowing for sure what all the doctor found.

A few days later, the doctor contacted my husband as we waited in the ICU waiting room. I do have blockage in my left leg but none in my right. Yet my right leg is always swollen as well. Mystery! Anyway, husband and I see my vascular surgeon on February 5th to get more results and game plan.

Decmber 3, 2009 - Drs appt yesterday.

2009-12-04T14:27:00.000-08:00

Saw my Internist yesterday. We talked about my eye situation and she does not want me to be in such a hurry to have the surgery/transplant. She feels as long as I can see now , that I should not push it. Even though I can't read real well and have a tough time with print - I can see. This is fact, they prefer to wait until you have lost your vision totally. So, I continue to wait and deal with these dumb plugs in my eyes.

I'm getting ready to go in and have an ultrasound so I must cut this short. Have a good day!

Recovering from Thanksgiving 2009

2009-11-28T08:13:00.000-08:00

Tom and I had his family over for Thanksgiving. We got a 20lb turkey and a ham to cook. I decided to make my sausage - apple stuffing/dressing which came out delicious I might add. In between cooking and cleaning, I had to take "rests." My body does not move like it use to. My poor hip on right side was so sore. I could feel the bursitis starting to settle in.

As I write this I am actually falling asleep at computer. I wake up and continue typing but I do fall asleep and that is not a good sign that I got a good nights sleep.

I sure miss the old Kathy who had lots of energy and enjoyed cooking, cleaning and having a lot of people over. I truly miss those days and want them back so bad. The Chronic Fatigue, Fibro, Diabetes, and Hypothyroidism have just robbed my body.

November 28, 2009 - No REM Sleep

2009-11-28T08:03:00.001-08:00

I've been using my CPAP steadily for the last couple of weeks, and I think I've only had a couple of days of "good sleep." I am not reaching that REM deep sleep. There was concern about this back in 2007 when I had my sleep study done.

My sister-in-law Cindy as well as my friend Georgian have both witnessed me falling asleep during the day so I am going to ask them if they would feel comfortable writing a description of me falling asleep etc. I want to give these to the doctor in hopes that it may help to determine what is going on with me. I need to get to the bottom of this. Sometimes I feel like a walking zombie. Not good at all.

Nov. 23, 2009 - Trying to stay with it.

2009-11-23T12:58:00.000-08:00

My eye doctor told me when he put the plugs in my eyes that I would probably deal with a lot of moisture and he was right. He also asked me to stick with it if I could - meaning all the tears flowing down my face. What makes all this worse is the fact that when the tears build up in my eyes, I can barely see. I have a hard enough time with my vision and now I have to deal with all these tears? I want to just scream. People think I am crying all the time. It's crazy to say the least.

I am going to consult with a new eye doctor. My friend just had cataract surgery and wants me to see her doctor so I said I would. Guess it does not hurt. I know I am in the first stages with my Fuchs Cornea Dystrophy but I also have three other problems I am dealing with, with my eyes. It's just one huge mess and I am just devastated by all of this. I really am.

Not a Good Day Today. - November 9, 2009

2009-11-10T07:23:00.000-08:00

First things first, I forgot to change pain patch which made me feel just rotten. My friend Georgian came over to visit. What many do not realize about me is, I have severe cognitive issues. This was one of the reasons why I had to give up my business in 2004. I saw the change even before the diagnosis and I was only in my late 40's at the time. I have a terrible time with finding words when I am in a conversation with someone. I suffer from what is called Fibrofog. Fibrofog encompasses memory loss, difficulties using language, and difficulties with learning. Fibrofogs can occur at any time and can vary in intensity when they do occur. Fibrofogs tend to be at their most severe during flare ups in pain, lack of sleep or stress. Well, my pain today is at its worse since I did not change pain patch so makes logical sense. Here are some of the things I deal with on a daily basis.

difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
short term memory loss
difficulty finding the "right" word to use in conversation
trouble remembering simple numbers
difficulty remembering where you put things
transposing letters and numbers
trouble concentrating and focusing
trouble retaining new information

It is true, as we age we have these problems but not usually on a daily basis. I use to have a photographic memory and my supervisor when I worked years ago can tell you that. My memory was tops. Today, it's horrible and it puts me in a tail spin. I cry and long for the old me. I long for the old Kathy. Today, I was feeling sorry for myself and that's ok. I am entitled sometimes. I would not wish my life today on ANYONE.

The reason I am sharing this is because I was having a terrible time holding a conversation with Georgian and I just burst out crying. It's tough - I avoid get-togethers, especially with new people who do not know of my situation-health issues. I am very embarrassed and humiliated.

Fibromyalgia and Chronic Fatigue Syndrome Immune Dysfunction which I have (they actually overlap one another as far as symptoms) involves the brain/central nervous system. Here is a good article that explains all of this. FibroFog

Pain Medication and why it is important.

2009-11-10T07:02:00.000-08:00

I have been on a very strong pain medication for the last three years or maybe longer. My infectious disease doctor put me on it. It was of course to control my pain - Patch is to be changed every three days or every 72 hours. My problem is not over medicating myself but forgetting to change my patch. It is very frustrating to say the least. Yesterday, I got out of bed and felt as though I had been in a terrible fight. Every muscle/joint in my body hurt. Couldn't figure out why I was hurting more than usual. Even with patch, I still deal with some pain as it does not go all away. I put the date I changed the patch right on the patch and that is to remind me. I took a look at the darn thing yesterday and I was two days late in changing it. No wonder why I was hurting so bad. My point is, there is a reason why many are on pain medication and take it in a responsible manner.

Yes, there are some who over medicate themselves and that is the worse thing they can do. They need to speak to their physicians. It is obvious the dosage they were given is either not working anymore or they are just abusing the drug.

When people learn I am on a heavy medication they tease me about the "High" and I can tell you there is NO HIGH. Absolutely none - The medication goes right to the pain and controls it which is what you want it to do. I just wanted to dispel that myth. :-)

No one person should have to be in pain. I have learned this from my doctors actually - I have been blessed with some wonderful doctors who feel bad that I am dealing with all this pain. I know of many others who have a hard time getting their doctors to help them with controlling their pain and that is just not acceptable I FEEL in this day and age.

Being on pain medication for me has been a life saver because it has given me some quality of life. When you look at me I don't look ill or in a lot of pain and the reason being is - my pain is somewhat under control and that is a good thing. I can do the dishes - I can cook - I have some kind of life at least and not laying in bed. No, my life is not 100% but I do have something and I am very thankful for that.

Living with Sleep Apnea

2009-11-09T15:59:00.001-08:00

I wanted to talk about my sleep apnea as I felt it was very important. I was diagnosed in 2007 after I actually fell asleep in the exam room while waiting to see my Internist. First time I had done that - My internist decided to send me to her colleague to have a sleep study up in Los Angeles. Needless to say, sleep study was done and I had a severe case of sleep apnea. I got a CPAP machine w/ humidifier and it was so quiet.. I probably used the CPAP a total of three to four days than I put it away in the closet. Dumb thing to do. I did not like the full mask. Later on, I learned about the nasal mask. I called Advanced Sleep Medicine who did my sleep study and had them send me out the nasal mask which ended up in my closet as well. What was I thinking?

Since 2007, I have been experiencing a lot of falling asleep in the most inappropriate places such as the computer. After doing this several times, I finally had my husband help me get set up with my CPAP machine. You know, the one sitting in the closet - The last few nights I have used it with comfort. I like it and it does not bother me. The nasal mask is the best by far.. I am hoping this helps me because along with everything else I have to deal with health wise, I hate falling asleep during the day or when I am on the phone . Yes, I have actually drifted off while talking to my longtime friend Georgian on the phone. She had to actually wake me up while we were in the middle of a conversation a few times. I have done this while she has been over to my house visiting so she knows what I go through

Sleep apnea is nothing to mess around with, and I should have known better. A common sign of sleep apnea is fighting sleepiness during the day, at work, or while driving. You can find yourself falling asleep during quiet moments of the day when you are not active. This is when I find myself falling asleep when I am just sitting idle at the computer. Thankfully, I have never had an episode while driving.

If you have been diagnosed with sleep apnea, please do not do what I did - put the CPAP machine away in the closet. Put it to good work - make yourself feel better. This is something you do have control over. (Yes Marilyn, you were right). If you think you have a sleep issue, see your physician and ask him for a sleep study. You can actually die in your sleep so this is nothing to fool around with. I consider myself very lucky thus far, someone has been watching over me.

Oct 30, 2009 Eyes - rushing water like a fast flowing river

2009-11-04T15:31:00.000-08:00

Well, I am trying to be humorous. So, the punctal plugs the doctor put in my eyes are now causing moisture to flow out and I do mean "flow out" like a fast flowing river - running down my cheeks every day. Most of the time I can't see very good at all due to the moisture. I had an appt with Dr. August yesterday but I was not feeling well so I cancelled, and will reschedule later on. Not sure what he will do about this but there you have it...

Fusion at L5 S1

2009-10-22T11:57:00.000-07:00

Last December 4, 2008 I entered Little Company of Mary Hospital, and had a Lumber Interbody Fusion at L5 S1. I suffer from Degenerative Disc Disease. Before I had my surgery it was becoming apparent that I was going to need something done as the pain was super bad. I could hardly bend over and when I did, I was in extreme pain. My doctor sent me to Dr. Simon to have a discogram which is a painful test but if you really want to know where the pain is coming from then this is the test to have. Sure enough, the pain was coming from L5 S1. Dr. Simon took one look at it and immediately told me I would need surgery. Back to Dr. Rogers with the discogram results - she set me up for surgery and I have to say, it was the best thing I ever did. Dr. Rogers took very good care of me. Recovery went real well - I was jazzed because I no longer had that aching leg pain anymore however, that was short lived. It came back. So obviously that problem is not coming from the back. It's a terrible dull ache but the pain patch helps thank goodness. I am very happy with how my back turned out. I just hope I won't need further surgeries because of the degeneration. As we age, we all have some problems back there. I just started at an early age and it was degenerative disc disease. Not everyone has that - or gets it.

Fuch's Corneal Dystrophy

2009-10-18T08:02:00.000-07:00

This new diagnosis came as a complete shock. I had been diagnosed by two separate eye doctors however, my Internist wanted me to be seen up at Jules Stein Eye Institute @ UCLA Los Angeles, which I felt was a good idea. We just did not want to believe I had this. My Internist felt I had not had a break and I agreed with her. It seemed as though every time I turned around it was something new and totally unbelievable. Here's an article on the type of surgery they do at Jules Stein on a Fuch's patient. I was seen by Dr. Sophie Deng.

Recently, I went back to my regular eye doctor here in the Torrance, CA area and he has decided to follow me and when the time comes, he will make sure I get the appropriate care. Currently, I have a few problems which will make it harder on my Fuch's - they are Blepharitis, Strabismus, and Amblyopia.

Dr. August decided to take out the two plugs I had in both eyes and re-insert two plugs in each eye. Lower and upper eye lids. This was to help my eyes with moisture as they were completely dry. The left plug had disappeared anyway. This procedure does not hurt. His reasoning for doing this was to keep the corneas from further damage. Although Dr. August is not a cornea specialist he does know enough when it comes to the health of the cornea. Most doctors do not like to do cornea transplants in Fuch's patients until the cataracts are ripe. My cataracts are not quite there yet. Having said that, if I were to wake up tomorrow unable to see then they would go ahead and do a transplant. I just have to trust my eye doctor and believe that he knows what is best for me right now. The plugs are causing excess tearing and the moisture continues to drip down my face however, Dr. August has asked me to stick it out so I will. I rarely leave my house anyway so it's not that big of a deal.

Introduction

2009-10-15T12:14:00.000-07:00

Hi - My name is Kathy and I am 56 yrs old. Back in 2004, my life changed forever. I had a secretarial business, which I loved as well as my clients but I noticed a change in my behavior. I had less patience and I would get agitated. I started to worry about myself. During this time, I was in and out of the hospital ER with swollen legs that hurt like heck. After discussing with my husband, I decided to give my business up and concentrate on my health. I hated to do that to my clients but our health comes first, at least it should. Prior to my business, I worked out in the corporate world. From 1979 to 1994 I worked for an oil and petrochemical company. I was laid off in 1994 and came back to work for them as an independent contractor. My secretarial business was by far the biggest achievement for me and I poured my heart and soul into it until I got sick.

I went to see a Neurologist and he diagnosed me with Peripheral Neuropathy in my right leg. Then it was off to see a Rheumatologist. Dr. Liu diagnosed me with Fibromyalgia. He started poking me and I literally jumped as it hurt so bad. He was touching the trigger points. I would wake up every morning with terrible pain all over my body. I felt as if someone had hit me with a bat - I mean the pain was just horrible. I would get shooting pains in my shins and terrible charley horse cramps in both legs. Dr. Liu did some blood work and one of the many virus' in our bodies was elevated. It was the Coxsackie virus. He referred me to Dr. J. Chia (Yes, that is his real name) in Torrance who is one of the leading researchers on CFIDS (Chronic Fatigue Immune Dysfunction Syndrome). After a long consultation/examination Dr. Chia diagnosed me with CFIDS. Both drs told me there was no cure for Fibro or the CFS. I thought, "oh great" All they can do is manage the symptoms/pain. Dr. Chia put me on a pain patch which has given me some quality of life. If I did not have the pain patch, I would be in bed.

The year is 2005, I learn I have Type II Diabetes. Not really a shock considering my father had diabetes as did his whole family. I did take good care of myself but that still did not stop me from getting diabetes. Did I have diabetes long before my diagnosis? We will never know.

Between 2005 and 2009 it has been one thing after another. More health problems - more hospitalizations. Lots of serious infections that needed extra care and were life threatening. I had two bouts with cellulitis that just drained me. I also learn I have sleep apnea during this time and the reason for my swollen legs? Venous Insufficiency. I recently learned I have a rare eye disease called Fuchs’ Endothelial Dystrophy that affects only 1-2 % of population. I am slowly losing my sight. I am also dealing with high blood pressure, hypothyroidism, carpal tunnel in both hands/wrists, degenerative disc disease, bursitis (hip), and rosacea.

A few have asked me, "how can one person have so many things wrong with them?" I wish I knew because even I do not understand it. I have learned to live with and accept what I have been dealt. What other choice do I have?