by poolI haven’t written in awhile. After reviewing my previous posts, I am a bit impressed that I could articulate so well even during the worst of this recovery. Unlike some, I did not discover blogging or facebook support groups until six months into my recovery.

Since my last post, I have investigated hormone therapy a little. My endocrinologist does not want to do the testing or add hormone replacement as she believes some of the side effects may outweigh the benefits. I’m not sure if I agree but then again, the cynic in me has to admit that of all of the people recovering from this disease that I have met, very few, even the ones on growth hormone will admit that they feel wonderful and giving myself a daily injection isn’t my idea of a good time.

That being said, I have seen improvements over the past year. I now do yoga on a regular basis. My core, hips, legs, ankles are stronger. I go up and down stairs without holding railings most days and can even run up stairs. I’m still playing the trying to lose weight game. It’s getting really old. I just started a fitness challenge and hopefully that will spur me on to really watch my diet and exercise. I also started paddleboarding last year and really enjoy it. My balance is better (even with the numb feet) than most of the younger, supposedly stronger members of my family (yay me).

My doctor and I have played with my dosage of hydrocortisone since I was so despondent at my visit last April. At first the increased dosage from 15 mg to 25 mg. worked wonderfully. I noticed about six months out though that I was feeling the same on 25 mg. as I had on 15. I’ve been decreasing my dose to 20 and possibly to 17.5 since I don’t believe building up a tolerance to a higher level of steroids when it doesn’t seem to help in the long run is a good idea. Also my vitamin d levels have dropped even though I take a high dose weekly supplement. I’ve started using a sun lamp and hope to get those levels up as I’m sure that is what is causing me to drag. Additionally my doctor switched me from levothyroxine to synthroid hoping that might help. One additional bit of advice is the Greenstone generic is actually brand Cortef and seems to work better than other generic brands of hydrocortisone.

One of the very best things about this disease for me has been all of the wonderful people I have met both in person and online through facebook support groups. It is so wonderful to have the world wide web as a source of information sharing. The bonds I have with those whom I have this disease in common are very, very special. I hope anyone who has to suffer with a medical condition could find such support groups and make such wonderful, life long friendships.

If you’ve found this blog, thanks for reading. If you’re just starting on your journey, I wish you luck. Having a rare disease is not fun but it is life-changing and sometimes in very positive ways. I don’t know who I would be had I never got Cushing’s Disease but I like who I have become through the struggle.

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042013Slow and steady wins the race? Cushie’s are the ultimate turtles! I am three years out, still have issues but nothing like living with cushing’s.

I still feel weak. I’m still steroid dependent, meaning my adrenals haven’t woken up. They produce the bare minimum amount of cortisol so I supplement daily. I wish I felt stronger and had a better mental outlook.

  • I have noticed some improvements though. I can walk up stairs without holding on to the railing

Things I hope to work on in the next few months:

  • Treat neuoropathy in feet (accupuncture, supplements)
  • Find out about HRT (Hormone Replacement Therapy), female hormones and/or growth hormone to stave off dementia and help with memory issues.

Here’s hoping that year three gets better and better.

 

 

14 1/2 months out and starting to feel better. I hope this continues. The newest thing is that I feel nauseous a lot. It’s kind of like morning sickness.

september 12 lake superiorMy one year after surgery anniversary was 1/11/12. It’s strange now to think that my surgery was on 1/11/11.  I look back at a photo taken in 2007 (one of my previous posts) and I can’t believe people weren’t screaming at me to find out what was wrong! I’m sure people asked and I just kept thinking that I must be this horrible, lazy person. I knew I was walking daily and trying to eat right, but thought I just wasn’t doing things right. Self doubt is probably the biggest obstacle to a cure to this disease and of course doctors not wanting to do more than suggest eating right and exercising to their overweight patients. I saw two dieticians in this time period.

I finally started feeling better at about the one year mark. I have not had the dramatic weight loss that some talk about. I’ve learned to accept that. I feel good. I will work at losing the weight gradually. I look much better. My face, neck and body do not look bloated. The red coloring to my skin is gone. My hands and feet have feeling in them. The incredible achiness has lessened substantially. That creepy-crawly feeling I used to get in the evenings is a lot less. I still am all over the board emotionally but my family reports that I am much more laid back than before.

I went through a long period (from about six months after until about the one year mark) where I was really unsure if I would ever get better and wondering if it had all been worth it. I was extremely week throughout the Summer into Fall and thought I felt worse than I had before the surgery. I knew there would be a period immediately after surgery where I would feel terrible, but I did not think I would feel worse later on. I think this is due to the change in steroids I was taking. Looking back, I felt worst when I had just changed meds. (about 1-2 weeks later) and when my meds were tapered down. I don’t think my body adjusted well to the switch from hydrocortisone to dexamethasone and I don’t think I did well the entire time I was on dexamethasone…wish I had never switched. I also have to say that these steroids affect the appetite and while I was on the hydro I was always hungry, on the dexamethasone it was better, but I really think I have done better on the prednisone and really noticed a lessened apetite when my dose got down to around 8 mg./day. I had switched because I had developed a rash on my chest that really bothered me at night. I thought it was due to the meds., but it may not have been. My skin went through many changes those first few months. I am just now noticing that I have finally gotten rid of the rough, rashy area where my bra would rub on my skin.

The good news is, I am beginning to feel normal. I have a normal appetite, not an insatiable hunger. I feel like I can be healthy. I like exercise, and feel good after doing it. I do get really stiff almost immediately after I finish, but I can get stiff  just sitting for a few minutes too.

I believe the most negative thing about recovering from this condition is that its hard for people to understand how you may be feeling. You look normal, but feel far from it. People may notice I walk really slow, stiffly, etc. I’m not sure how much they really care or want to know about why or understand that I’m not being lazy when I don’t pull my weight helping with lifting, carrying, etc. I just can’t do it. I am a normal looking 40ish woman who is only as strong as an 80 year old 😦 But hopefully now, getting stronger every day!

I had surgery on January 11th, 2011 to have the pituitary tumor removed.  I knew I would have to go through a month of withdrawl symptoms and the worse I felt, the better my chances for a full recovery.  I felt HORRIBLE! I was a little deceived though, because the first week was fine. I actually felt great. Then about midway through the second week it hit me, nausea, vomitting and an extreme sensitivity to scents. I got very weak and after the third week of vomitting, I went to the endocrinologists office and had IV fluids and a shot of steroids. That worked magic and I felt much better. Things seemed to be improving. I lost weight (mainly due to vomitting and not eating for three weeks, in retrospect I believe it was mostly water weight). I went on dexmethasone, then hydrocortisone, then back to dexmethasone after I believed I was having a reaction to the hydrocortisone. I started feeling ravenously hungry and gaining weight…I was gradually tapered down on the dose of dexmethasone and at this point, six months out, am beginning to feel less hunger. I am also beginning to feel weaker and tired. My doctor assures me that this will pass as my body gets used to the lower dose of steroids. This is not a case of steadily feeling better and stronger as I had hoped, but a bit frustrating. I know there are improvements in some areas, but others will take time.  I’m looking forward to increased strength and stamina in the very near future and remembering my blessings in the present.

withgarrett1110 This is what I wrote when I was first diagnosed with Cushing’s:

November 10, 2010

This is my story…it’s starting somewhere in the middle.  I have just been diagnosed with Cushing’s Disease and it’s just hitting me…I’ve been reading stories by people who’ve gone through it and it’s just unbelievable.  There are so many weird symptoms and other conditions that seem to appear with it, so each time you get diagnosed with something you think, okay, that’s it…I’ll start feeling better once I get through this hysterectomy, thyroid issue, work out more, reduce my cholesterol, blood sugar, sleep apnea and yet, the next day, week, year, you still don’t feel better, blood sugar goes up even though you are working out and watching what you eat, muscles are weak, I started having to wear long sleeved shirts because of the embarrassing bruises from nothing…I even made myself some “cuffs” to wear over my wrists to hide the scratches and bruises. My favorite activity, gardening became almost too dangerous.  I would have bruises for weeks after one afternoon of gardening.

Thank goodness we decided to change health care providers to save money.  I wasn’t satisfied with my doctor and decided I would have to find a new one.  I went to an internist, Dr. Joyce Brehm, in Stoughton.  I had just been diagnosed as a diabetic despite my best efforts to not turn that way.  I had managed to lose almost 20 of the 40 pounds I had gained seemingly overnight in 2003 or 2004.  I had attributed the weight gain to having a hysterectomy and turning 43 having heard that everyone gains weight once they hit 40 and their metabolism slows down.  I had also felt like I had too much anxiety since my son went to college and then the military and thought I was just depressed.  I had gone on anti depressants around that time.  Each time I went in to the doctor after that, she would change my prescription or tell me to take more when I complained of things like headaches, etc.  After about four years on anti depressants, I started thinking that they may have been causing the weight gain and slowing down my metabolism, so I went off of them.  I remember thinking that my body was rebelling against me.  The harder I tried to work out and watch what I ate, the worse I felt.  It was extremely aggravating to feel like no matter what I did, it didn’t really matter.  I didn’t recognize myself if I walked by a mirror in a store.  I remember once seeing my reflection and before it registered that it was me, I thought “who’s that old, ugly woman?” I had one or two friends show real concern and ask me what was wrong with me or tell me that I should go to the doctor.  I did tell the doctor some of my complaints and did get my thyroid checked which turned out to be off, so I went on synthroid.  I also went in for sleep testing and was found to have sleep apnea.  I still can’t sleep, with our without the CPAP machine.  My blood pressure suddenly became elevated, my cholesterol remains out of whack and my blood sugar just kept getting higher and higher despite the fact that I exercise every day and try to eat right.  I continually looked at other people and thought, “why don’t they have all these problems, I do more than they do!”

I was having a lot of back pain for no reason and numbness in my feet and hands.  I often feel like I just can’t see despite the fact that when I have my eyes checked, I’m told I have 20/20 vision.  I have such aching in my muscles and joints and my bone density is bad (again despite the fact that I walk every day).  I felt like the doctors I saw just didn’t believe me when I told them I walked 2-3 miles per day.  I also spend several hours a day out in the garden in the Summer and do pilates when I can.

So, at the end of my visit with Dr. Brehm I asked and became a little agitated when there was really nothing she was planning to do about my muscle pain, etc. She looked me in the face/eyes and said “it’s pretty rare, but there is something called Cushing’s Syndrome which is characterized by a round face, a fatty neck and back hump and excess fat around the stomach with fairly thin arms and legs, there is a test to check the cortisol levels. Maybe I should have you take that test”…and that, as they say, is history.  I had the first test, which was a 24 hour urine collection.  When that came back abnormal, they referred me to an endocrinologist.  I had to wait 3 months to see the endocrinologist (Physician’s Assistant, Kathy Gamoke) in Madison.  They looked at my tests and blood work and had me do another type of test, a saliva test.  When that came back abnormal, they did more blood tests after I took a drug that was supposed to supress the cortisol.  It still came back abnormally high.  They then sent me for an MRI to see if I had the pituitary tumor that indicates “Cushing’s Disease”.  On Monday, November 8th, I went in for my follow up visit with Kathy Gamoke and was told that I did, indeed have the tumor.  I am now scheduled to see a Endocrinology Specialist, Dr. James Findling in Milwaukee next week, November 16th to have more tests to determine if there are any other tumors.

I am so happy to finally have a diagnosis and to know that all of these weird symptoms and conditions are not in my head and may not be something I have to live with permanently.  I have been told by Kathy Gamoke that once I have the surgery to remove the tumor, my diabetes will probably be cured and my weight will probably go down.  WOW!!!

Some of the symptoms of this condition include difficulty concentrating, memory problems and other mental/emotional issues, but these can also be attributed to not sleeping, depression, bad blood pressure and alcoholism.  I can’t tell you how many doctor’s asked me if I drank and/or just wrote me off because I was on anti depressants…I wish I could drink.  One drink and I feel horrible, it seems to go right to my feet and make them swell and be painful.  One time I had a margarita with a Mexican meal and I couldn’t even get my shoes on.  I thought it was from the salt….or sitting all day, doing one of my favorite things, sewing.  Right now I can’t even concentrate to sew, watch a movie or make plans.  I get easily overwhelmed and can’t do things I used to be able to do.  I just wonder “how do they do that?”  “Where do they get the energy?”…I know many women in their 70s and 80s and I feel like I can’t keep up with them.  When they tell me they don’t have the energy they used to, I think “I don’t have it now, what will I feel like at that age?”  I can’t read a book and, if I do, I can’t remember anything about it, even the title or author the next day.  I can rent a movie and forget the name of it before I get it home or leave the library or store.  I’m so glad to know that this may not be permanent.  I’ve been afraid to tell people about my symptoms and conditions because they will think I’m a hypochondriac or just really fat and lazy…I feel like I can relate to people with dementia or alzheimer’s…

Well, if you’ve gotten this far, you have more stamina than I do.  Thanks for reading and please pray for me.

 

I hope to use this format to document my experiences with the supposedly rare condition called Cushing’s Disease.  Cushing’s Disease is diagnosed as a tumor growing on the pituitary (or ardrenal gland or another organ in the body) which secretes hormones telling the adrenal glands to overproduce the hormone cortisol. This causes many other medical conditions, such as weight gain, fullness in the face, neck, back, diabetes, high blood pressure, skin problems, bone and muscle weakness, sleep apnea and depression. This disease/condition often goes undiagnosed for many years.