HOW CUSHINGS AFFECTS YOUR LIFE

June 14, 2013 How the Disease affects my life

Posted June 14th, 2013 by Mark Ghiassi

Many people have now asked, HOW DOES CUSHING'S AFFECT YOU?

I am not a blogger. I am a private person. Many of my friends did not know I had brain surgery and how the disease affected our lives. Since I have been sick, when I go out in public I do not look “sick”.  I have gained 50 pounds due to the disease.  I did not complain after surgery and did not tell when I was in pain because I always wanted to enjoy myself when I went out and saw friends or family. 

The disease is not just about surgery, post surgery care is crucial. A recovery varies depending on damage to your body from the disease. Remission is 7 years. Cost of medication can be the same cost of cancer medication.  Cushing’s can cause and affect: osteoporosis, muscle weakness, bone and joint pain, psychosis, obesity, fatigue, diabetes, cardio myopathy, heart attacks, potential organ damage, food and medicine sensitvities, insomnia, and metabolisim of fats, carbs, proteins. This list is not all inclusive.

I was asked the question in my disability paperwork,

WHAT WERE YOU ABLE TO DO BEFORE CUSHING’S THAT YOU CAN NOT DO NOW?   I have edited my response to TEN specific daily things:

         Get out of bed, take a shower, and wash hair.  Pick an outfit, do my hair, make up, brush teeth, dress, eat breakfast.  Used to do all in one hour before going to work.  Now it takes me over the course of a few days.  I have to pick what is important.  My hair has completely thinned out and I have lost hair in the front.  I have always had really long healthy hair.

         Sort laundry without having to stop halfway through or waiting for someone to come home and help me. Do three or four loads of laundry in one day and still have enough energy to go out to dinner or see a friend the same day.

         Writing in general, my bones and joints in my hands start to get sore when I hand write. Not suffer from muscles spasms in my neck and throat.

         Make dinner for my husband. Use the stove with pots and pans, chop vegetables, move around fast in kitchen preparing a dinner and dessert. My joints and bone in hands hurt if I try to chop vegetables for long. I can not stand in kitchen because hip bones hurt too much.  I have to sit down and rest. A 30 minute meal can now take 2 hours. Then if I spend my time doing that I have to go lay down and rest with my sleep apnea mask on for at least 1 hour.

         Keep mental lists, now I have to write everything down even the smallest tasks like reminders to have husband empty dishwasher. Going shopping to many stores like the mall without worrying if I am overdoing it and will end up in bed the whole entire next day.

         If I swim I get fatigued, lightheaded. We have a pool and I have not swam in it in over a year by myself because I am afraid I will not be able to manage my pain or fatigue and will hurt myself by doing too much. By doing too much I mean being in the pool for more than an hour. I used to swim laps, do water aerobics in pool, dive and jump in pool all on my own. I can not do any of this anymore.

         I had memory problems and couldn’t remember where I was headed when driving.  I ended up in ER three times because of this.  I was on a freeway that I traveled to regularly.

         Controlling my emotions. I will be crying one hour, then full of anger 2 hours later.  You get surges of anger and you don’t know why you are angry. I was never like this before. Physically this drains your body and I can only sleep after the surges go away because your brain is mentally tired and your body has been through a huge rush of adrenaline and needs to rest.

         I have been vegetarian, gluten free, on a high protein low carb diet. Every three weeks or so I have to change my whole way of eating because my body becomes sensitive to foods and starts creating more symptoms of Cushings in my body by giving me muscle spasms.  I never had to do this before.

         Spend as much time with my nieces unlimited.

         Tolerate medicine: My body is extremely sensitive to different types of medication or just doesn’t absorb it. I usually experience side effects from medicine earlier than most people. For example, if it takes 3 weeks for a medicine to start working I feel it within the first week.

I know this is a long list and a lot for people to read through. It is not all inclusive.  After surgery, the muscles and body need to repair themselves. This may take years. I remember when my endocrinologist first told me, be careful because you might suffer weakness in your leg while driving. This did not compute. 

After surgery, one of the medical expenses not covered by insurance, is to use a endocrinologist in Los Angeles who specializes in treatment and research in my disease.  We are lucky he is on our area.  This specialist will work with your current doctor.  Cortisol and hormone replacement after surgery is necessary to live. Our body can not live without cortisol.  This can take 1 to 3 years to wean off cortisol replacement to determine if your pituitary is working. Adrenal failure can cause a person to die so it is extremely important for a person to have a specialist after surgery of this type.

It takes a lot of mental energy to write these updates and keep this fight going against insurance and trying to obtain disability.  Stress triggers many of the symptoms. Many people have emailed me and have offered emotional support now. I will continue to share with you what I can.  I truly feel blessed by the help people are providing us in any way they can.  I want to be honest and open with those who support my husband and I. My husband is my biggest supporter. Thank you.

WHAT IS NEW

Posted October 10th, 2013 by Mark Ghiassi

OCTOBER 10, 2013 UPDATE: 

TESTING

My next labwork will be done at the end of the month. I am concerned that we have not started weaning off on the hydrocortisone. We know it will be a slow process but other people have said I should be weaning during these last two months because I am not giving my pituitary a chance to work. So, as you know we switched to a PPO. We have decided to go to UCLA and see the other endocrinologist for more information. We have to get the MRI done, it should have been done in 3 months so we are running a little behind schedule and I am getting more stressed.

DOCTORS

We have an appointment set in two weeks with the endocrinologist we heard at the Cushings Convention.  Mark and I have a lot of questions. We need to know if all my hormone are being tested. There seems to be some that are not. We need to know if I should be weaning now even a small dose. We need to know if we need labwork every month because we have to prepare financially for that. I have several symptoms that I had before and we want to know from an expert if this is normal and how is this treated. 

DISABILITY

Things are picking up. They arbitrarily scheduled me for a neurological and mental health test. Of course they are on dates that I have the appointment with the specialist. If you don't show up you can get penalized. So now of course I have to get it all rescheduled . This is life. I researched some of the programs that the State of California provided us. Unfortunately, since Mark works we have too high of an income. It is very difficult for a middle income family to get financial support from several of the non profit or even state agencies. Is is like they want you to loose everything before you get help. It is very frustrating and disheartening at times.

EMOTIONAL SUPPORT

As some of you know from my previous posts, I have been trying to find a therapist. And my previous experiences have been bad because I was undiagnosed and the therapist did not understand that I had this chronic disease. Well I am not giving upi I am trying a new one. 

Mark and I went to a patient support group the other night.  It was not what I expected.  I realized that a lot of my support has come from my online support groups and from all of you who write to me when I post. I can not imagine what people dio without friends and family who support them.

I went to church for the first time since my surgery. It was difficult to stand and sit. I mostly sat but it was nice to go and see everyone. My church is very supportive.  

I am very nervous about the MRI and the next month. It was about this same time after surgery last time we found out that my tumor was still there. I think about it every day. I try to enjoy the days I am feeling well. But I remember that last time I thought I was feeling well it went wrong. 

I have been working part time from my home office doing bookkeeping. I am very lucky that I have my job. There are so many people less fortunate, it really makes a difference in my mental health even though it is less than ten hours a week. 

Once again, thanks for your support!

Michelle Ghiassi

9 25 13 Quick Update

Update

Posted September 25th, 2013 by Mark Ghiassi

Thank you everyone for responding. We are keeping this website up through December but I will be updating on my blog at:      http://mdglessons.blogspot.com. 

For those of you you would like to keep getting the updates, you submit your email to the blog and it will update you. 

That way if someone wants to donate they can still do so by reading the update when they want too. 

Update:

• We changed to PPO.
• I am going to get my next MRI set up with Dr. Kelly.
• Repeat labwork in middle of October.
• Physically, I am having good and bad days. Of course I am progressing, it's just really slow. 
• Everything will cost a little more now because of PPO.
• I am working at least 5 to 10 hours a week from home at night but there are days when I literally can not sit at the computer because my muscles are so weak.
• Disability is not approved yet. I did receive a call from Department of Health in San Francisco; My letter that I wrote to Obama was sent to that department. The man I spoke with is going to look into funding for medicine or any other things that might help us.  At least my letter went somewhere.

Like I said before, my energy really can be analogized to  a car filled with gasoline and when I run out I am totally wiped out. This has been quite a struggle the last two weeks. Learning what my limitations are. When I am having a really good day I want to do everything. I had to take extra cortisol this last weekend because I overdid it and started to get nauseous and a headache, signs of adrenal insufficiency.

I will update you again. Please forward this website still to help us, thanks

PART 13: HMO V. PPO

9/11/13 Update

Posted September 11th, 2013 by Mark Ghiassi

HMO V. PPO

We have to decide this month to choose HMO v. PPO.

Last year around this same time, we had to make the same decision. We chose HMO because both Mark and I thought I was in “recovery” and we did not understand how Cushing’s affected my whole body.

Three months after our first surgery, we trusted all our Doctors advice and chose HMO believing the Cushing’s was gone, resulting in out of pocket costs of over $40,000.00. Emotional stress and time expended on appeals to the Department of Health. There is no price to place on what was lost.

As you know, the first surgery failed, and now oddly enough, my second brain surgery was three months ago, and we are faced with the challenge of making the same choice.

 The answer is simple: Change to PPO.

 The problem: the cost

POSITIVES:

•          The monthly cost of the PPO is the same as the HMO. 
•          We will not be stuck in a specific IPA group with doctors who are not specialized or who don’t believe in my disease. 
•          There is a doctor at UCLA, an endocrinologist that Mark and I saw at the Cushing’s convention. He is in the blueshield network (preferred). He would not have performed the surgery. We want to make an appointment with him so we can get an expert endocrinologist in Cushings who can evaluate my progress to see if my local doctor is on the right track. 
•          The only other expert is out of network but in Los Angeles as well. However he does not take insurance and would be more expensive.   Many of the other Cushing’s patients have used him and have positive results.

 If we had the HMO, we would have to prove there was no other doctor in our group that qualifies in order to get a referral to him. The plan could choose not to authorize this. The plan does not understand my disease and I am tired of fighting every step. It appears that a lot of specialists are starting to step away from being providers for some reason and doing cash based only.

NEGATIVES:

•          COSTS: Our co pays will increase for both my primary doctor and specialist.
•          We will have a deductible that we have to meet before the PPO starts paying. There is a yearly cap on what we will pay if we choose preferred physicians.
•          If we choose a non preferred provider (ex. My second surgeon Dr. Kelly is out of network). The PPO could authorize some payment but there is no cap to what we would pay. However, at least some of it would be paid unlike this second surgery. DEFINITELY IMPORTANT.
•          The cost of labs and testing will not be covered as much as with the HMO. Currently I do not have to pay for labwork, the HMO covers it. Of course this did not stop the HMO from sending me bills this last year and me having to argue every step of the way.

The bottom line: the benefit of the PPO to be able to go to doctors of our choice outweighs any other aspect.  The best chance of recovery is to make sure I am treated by doctors who know how to treat me. This year we are going to try PPO and see what happens.  Remember I am only three months out of surgery, it was about six months in when the doctors finally confirmed the tumor was not removed and three months later (wasted time on appeals) that I had the second surgery.

 Please continue to forward our website to anyone who may help. This is going to be a long long road for us. Disability is still pending. I am trying to do my book keeping but I am managing six hours a week.  They have not weaned me off the cortisol, this will take over a year to do. Every time I decrease I will become exhausted and suffer withdrawal again.  There is also no guarantee that my adrenals are working correctly due to the Cushings’ tumor.

Everyone knows I am not a negative person but I have to state the reality of what is going on here medically. The less stress I have over the next year the better the chance for recovery and remission. 

When we end this page, if anyone wants updates,please send us a response by email to mdghiassi@gmail.com. I thing I am going to create a blog so anyone who wants to check in on us can. We are trying to create a list as to who wants updates so we don't bother everyone. Thanks for all your support.

Love Michelle

PART 12: PROGRESS AUGUST 12, 2013

PROGRESS

Posted August 12th, 2013 by Mark Ghiassi

Progress since I last updated:

         The new medication seems to be working\, way less pain and fatigue.

         We went to the Orange County Fair with my family. We brought the wheelchair and I walked when I was not tired. Two weeks ago, I could not do this. 

         I drove my car last week for the first time, just to the local store and bank, but it was nice to do this on my own.

         I started doing my bookkeeping, just a couple hours nothing too stressful.

         I have been in the pool with my nieces and we had a blast. I can't remember the last time I laughed so much. 

         My doctor said it was the first time he had seen me happy in a long time.

         Our friends did two fundraisers for us and raised over a thousand dollars.

         Some of our friends have sent us checks to add to our medical expenses.

         So we have funraised a little over $16,000.00.

         I have paid some of the medical bills. This has helped our stress a lot and has allowed me to focus on recovery. Disability is still pending.

         AND THE REASON FOR ALL OF YOU DOING THIS, I FELT LIKE MYSELF THIS WEEK. This is the most difficult feeling to explain, but trust me it is way positive.

I just wanted to share all of the positive progress I am making and what I was fighting for again. I posted new pictures. I try to do a little each day. My next appointment is at the end of the month. They say not to expect to loose weight until about 3 or 4 months in. I am doing my best to maintain being as active without hurting or exhausting myself. 

Once again, thank you for all of your support. I decided to keep this page at least through October because we will have our first MRI results by that time. 

PART 11: JULY 30, 2013 UPDATE

RECENT TESTS AND MANAGEMENT

Posted July 30th, 2013 by Mark Ghiassi

MANAGEMENT OF CUSHINGS

We got the results of my labwork yesterday. We spoke with the endocrinologist about "recovery" and what has happened over the last month.  

The management of the pituitary gland and all of the hormones it can affect is a complex process. This month, we tested my thyroid gland, and it appears I have hypothyroidism now. So I am now starting a daily medicine for that. This is fixable with medication that you have to be on the rest of your life. As I mentioned I felt like a 90 year old person trying to walk, my doctor said this is a common feeling when people have hypothyroidism. It will take about a month for this medicine to start working.

We checked my cortisol and ACTH. They are both as low as when I left the hospital. So a good sign as far as surgery being successful as far as removal of tumor. This makes me feel good. This also shows that my pituitary gland is has not "woken" up yet. So to speak.

The doctor explained to us that the next year will be about changing my dose of cortisol depending on different results. So since the thryoid is not working, we are actually raising my dose of cortisol until we test again. The doctor said I should be able to function.The bone and joint pain is from this as well and we hope that will get better.

The doctor told Mark and I that the goal is to get me to a level with the cortisol that allows me to function normally and then gradually taper the medicine down as we test monthly to see if the pituitary is working. He explained to us that it may never work as well, and I would then remain on cortisol for the rest of my life but it is too early to tell but he wanted us to be prepared for this possibility.

REALITY ABOUT WORKING

In the meantime, he explained that most people with high stress jobs have a difficult time returning to the job, he gave examples of a doctor, or CEO of a company, etc. The reason why it is difficult is because if you are living off of medication only and are in a stressful job you would have to "stress" dose, meaning give yourself extra cortisol during times of stress.

For example, right now if I had to have dental work, this would be considered a stressful situation, and I would have to take at least three times the amount of cortisol.

So I asked him what he thought about me returning to my line of work. He had forgotten what I did. I told him I was an attorney. Mark butted in and said she was a litigation attorney and was in court all the time. :) The doctor said it would be really difficult because of the stress as mentioned above with how it is a balance of the right cortisol.

I don't know how I feel about this right now. I believe it is too early to make any decisions. But it is scary thinking abut the future. This is why disability is important for me to obtain. We honestly do not know what type of work I will be able to do, And what type of management I will need to do.

Even though it is difficult giving up a career you have worked half your life for, it is not worth staying in that career if you will always be sick or suffering from trying to maintain your life while doing it. Plus the recurrence rate is high in people who have these high stress jobs.

OTHER GLAND ISSUES

I have been Vitamin D deficient since Cushing's and am on the highest dose that a physician is allowed to prescribe. So I will remain on that. Cortisol affects Vitamin D absorption.

The thyroid can cause high cholesterol and some anemia issues as well. I have not had to go on cholesterol medication but it does explain why it was getting higher. As far as the anemia issue, we have not received those results yet this week.  Most of you you know that I was anemic, had infusions, and now my red blood cell count is too high.

WHY I AM SHARING THESE DETAILS

I wanted to be able to explain why this recovery or management process was long. A lot of people keep thinking that after the surgery I should be "miraculously" better. I think it is because we do not understand how complex this disease is, the affects of the disease on the body, the time it takes to diagnose potential problems, and the treatment of the medical problems that the disease created.

So this first time I wanted to bore you all with the details to explains the challenges we will face this next year. Not only regarding health but about career, etc. 

Once again, I am very thankful for everyone's support. The longer we would have waited for surgery the more difficult any recovery would be or more damage to me physically. 

I promise not to bore you with thousands of updates but will make updates when they are important about how I am doing. We are going to keep this website up until October 1, 2013.  

Any help is appreciated. Thanks again

Sincerely,

Michelle Ghiassi 

PART 10: ONE MONTH POST OP

ONE MONTH AGO-CAN YOU BELIEVE IT

Posted July 27th, 2013 by Mark Ghiassi

CAN YOU BELIEVE SURGERY WAS ONE MONTH AGO

The last couple weeks have been really difficult.  I have not had enough energy to update everyone. Sitting here tonight I realized it had been exactly one month, I made it this far.

The last week I have not been able to walk well.  All of my bones and joints have been hurting. I can actually feel the bones on the bottom of my feet hurt. I was doing better when I last wrote and was walking around a lot more. Mark was pushing me in the wheelchair around the block. This week I have slept most of the day on and off and after standing for about five to ten minutes I am in pain. 

The doctors said I can compare recovery to being ran over by a car and withdrawing from drugs. I have not had either experience except from what I hear and see on tv and from people.lol. My muscles are so weak that once again, I can not lift anything more than ten pounds without getting fatigued. 

I managed to go out of the house to a family event last weekend. I over did it. I do believe this is recovery.

We go to the endocrinologist on Monday so I will know more about my cortisol level and will be able to update everyone.

DISABILITY UPDATE

Today, I received correspondence from Barbara Boxer's office. Remember I tried to get media attention and write various people for help. Well, the letter was a copy of correspondence sent on my behalf to Social Security Disability asking for an expedited review and for correspondence to got to Ms. Boxer's office. I was very surprised. Even if nothing comes of this, it is amazing to me that her office at least took the time too look into this matter for me. I will keep you posted.

As far as working, I tried to do a couple projects at home this week. Nothing hard. I over did it. My brain is very tired, I realize from this. Physically, the bones in my hands hurt even from using my phone and trying to type.

This disease is definitely not just about the surgery. It is about your entire body, mentally and physically recovering from the excess cortisol.

I have cried a lot the last week and have become really frustrated with the process because the reality hit me even more about the length of recovery. I spoke with my friend who has recovered and she got me through one of my worse days.

Thank you for all of your support. We got a couple of bills in and knowing that we have some financial support has really helped decrease my stress. 

Our friends got together and had a yard sale for us, and another friend is having a jewelry party and donating the proceeds, which has been nice. Another friend, helped clean our house and some have brought us dinner. This is so helpful. I am not able to bend or lift anything without pain.

Mark went back to work the last two days and I realized how much he was helping me. The last two days without him here have been difficult. Even having him bring me my pills, and even blow dry my hair. I am not looking forward to Mark not being here. But I will manage. 

That's all for now. Thank you