And It's About Time There Was Some Support For Cushing's!
My Metamorphosis from a “PEAR” TO AN “APPLE” TO A “FRUITCAKE”
My body type in the past since the age of puberty has been “hourglass” or Pear shaped. I had a waist and it was 10 inches smaller than my hips not the inverse as it is now. Then within a matter of 8 months my shaped turned into an Apple- “apple-shaped”. This change has been written off to aging and child birth by clinicians. Now that I am persisting on getting more complete answers with diagnostic testing I am told that these changes may be due to depression, anxiety or maybe “you’re bipolar”. SO now I am a “Fruitcake”??!
JULY 1999 I married my husband in Southern Pines, NC the summer of 1999. We were ecstatic to learn that by our first anniversary we were 4 months pregnant. My pregnancy was not the pregnancy I dreamed of: no pregnancy glow, or sitting back getting foot rubs and eating bon bons. Right away my body seemed to protest to what was happening. I had horrible morning sickness that would not refrain from rearing its ugly head anytime of the day. I had terrible edema/swelling in my legs and ankles. In fact I really didn’t have ankles anymore. I went from a 6 ½ size shoe to a 7 ½ -8 size shoe and a 6 size ring to an 8 ring size. I thought these changes would revert once I gave birth but they did not.( Do I still have some 6 ½ size shoes? Yes, I am nothing if not hopeful!)
I gained weight but it wasn’t restricted to just my stomach area. It appeared to be generally all over my body which didn’t really require me to buy maternity clothes so I found myself in Lane Bryant for the first time and would just buy plus sizes throughout my pregnancy. I had never been pregnant and thought that I was just gaining weight all over from the extra fluid weight. That is what my Ob/Gyn told me as well and I was content in the thought that if it was more fluid weight it would be easier to lose post partum. Besides I could get really cute clothes by just buying 14-18 size clothes and not every going to maternity wear. Towards the end of my pregnancy I had gained close to 60-70 pounds had gotten periods of high blood pressure, tachycardia (rapid HR), protein and blood in my urine, chest pains and severe 2-3 + pitting edema (where you can push your finger in the swollen area and make a “Pitt”. I would kid with my ob/gyn that I used the pitting area to hide loose change for the drink machine). But my doctors would run test, send me to a cardiologist, do 24 hour urine protein checks and could not find out what was causing these extreme changes. The ironic thing is that I felt great the whole time, granted the chest pains hurt and were scary, but my outlook was great. I felt that once I gave birth the changes would correct themselves again.
DECEMBER 2000 (Pregnancy wt.210 lbs size18)
I went to an OB appt. in about my 40th week and at this point my pregnancy weight was right at 210 pounds. After seeing my other vitals it was decided that I should go to the hospital to be induced because my blood pressure was up to 155/95 and I had 2+ protein in my urine. Due to these two finding the risk for eclampsia was a concern. I went and was induced/labored for 48 hours and then it was decided a C-section was needed and I delivered a healthy, beautiful 10 pound 6 ounce baby girl, Corrine Elizabeth. My plan of righting my body and my health was my focus, but I was soon to find it short lived. I was nursing Corrine and returned to work 8 weeks after she was born. My blood pressure did go back to my normal 112/70’s by 6 weeks post partum and I had ankles again. I lost 20 pounds soon after giving birth but my feet nor ring size returned to normal. I had a small problem with my hormones crashing and now looking back I would say mild post-partum depression. I was working and pumping milk and lost about 40 pounds total when I went to my Ob/Gyn because I thought I was developing a yeast infection. It was odd for me to have this type of problem back then unless I was on a potent antibiotic so I decided to get it checked-out. She asked if I could be pregnant. I looked at my little 6 month old in the stroller and said, “Well, I guess anytime you are having sex there is the possibility of a pregnancy.” She, asked “When was your last menstrual cycle,” and I said it has been about a 15 to 16 months ago since I am nursing. I was also taking the birth control Micronor which is a BC pill that can be used while nursing. But you guessed it I was pregnant.
SEPTEMBER 2001
This pregnancy was so different from the first on many levels. I was never sick. I didn’t have any skin problems. I felt even better if possible and then I found out I was expecting identical twins. My health care was then transferred to UNC in order to have a higher level ultrasound since these would be done weekly due to the high risk of identical twins. I did run into several problems and the pregnancy was full of ups and downs with the status of the twins. Then difference in this pregnancy was the fact that I of course did gain weight more like a pregnancy and the store “Motherhood” became my second home. I gained weight up to 210-215 pounds with this pregnancy. I worked like before up until a forced bed-rest around the 6 month period. Once the bed-rest was lifted at 7 months I went back to work but at around 8 months went into labor. This labor was horrific and I later found out that I had placenta abruption and they had to do an emergency C-section because they could not get a spinal block I went under general anesthesia. I awoke in terrible pain with a chipped tooth too. We had Chance who weighed 8 pounds and 6-8 ounces (I can’t remember right now) and little Cameron who we lost was under 2 pounds.
MAY – JUNE 2002
My life was full as you can imagine. But I went back to work at 6 weeks post-partum and Chance didn’t seem to want to nurse, because my milk didn’t come out fast enough. Right before returning to work though I ended up at the emergency room with a severe headache and stiff neck. I was taken back immediately and put in containment since my symptoms fit the description of meningitis. I was running a 100 to 101 degree temperature and the pain is about a 9 on a scale to 1-10. They attempted a spinal tap 10 times with 3 different physicians then decided to send me to radiology where they did it the first try by using a x-ray of my back and then tilting the table to obtain cerebral spinal fluid. The pain resolved within 24 hours and all tests came back negative and I never really got answers as to what caused the severe headache or neck pain.
JULY 2002- FEBRUARY 2004 (wt. 145-155lbs size 10-12 by end 2003)
The next year and a half found our family adjusting to the new members and the meshing of my career with being a mother. I decided to take on a new work position in a pharmacy working third shift because I found that my circadian rhythm appeared to be off. I found myself more awake during the late night hours anyway which I attributed to the fact that I had been pregnant or nursing for the past 2 years and the up/down all night had aggravated my sleep pattern. I did develop some post-partum depression which was hormonal and emotional related due to the loss of Cameron. I did seek treatment and found the depression was well controlled with Effexor XR 75mgs a day.
During my pregnancy in 2000 I was in 18-20 size clothing right before giving birth. I had gotten down to about a size 16 when I got pregnant again. Now the pregnancy weight was coming off and I was back down to the weight of 145-155 pounds and I really hadn’t thought that much about my health. I just knew that I was back in some old jeans and I was buying size 10-12 pants and size 10 dresses. So now I had lost the pregnancy weight and was not pregnant nor nursing for the first time in a few years.
I was working a lot of hours because there is a shortage of staff in the pharmacy and my employer was always in need for me to help. The night hours did not bother me in the least and I was never tired. When the 8 am shift employees came in dragging their feet you would have thought I was just coming in because I was the one so energetic! I would come home and clean, start dinner and maybe rest for 3 or 4 hours before I was back up again. Then start the whole scenario over that night. When working third shift we worked 7 days straight then had 7 days off work. But the weeks I worked consisted of about 95 hours in the pharmacy and then 10 hours in commute time. The week I was off I consulted at a doctor’s office for one day because I had done this for the past 4 years and hated to give up the position because I loved it. I am attempting to show how busy I was but yet at the time I felt good. There would be days that I would sometimes sit down and would “crash”, but as long as I was up and busy the energy was there. I didn’t find this abnormal at the time because I have always been a busy person with a type A personality. I honestly thought well it is just your body only supporting one person instead of two or more so it is able to do more??? I know not very logical but I guess I didn’t look a gift horse in the mouth since I needed all the energy I could get to maintain my role at work and at home.
MARCH 27th 2004 (wt. 145-155 pounds size 10-12)
A month in my life that I feel was a turning point to lead me where I am now. I don’t know if the changes had really started during my first pregnancy but I do now that a dramatic change for the worse started in March of 2004.
It was a Friday night around 3 AM and I noticed my left leg was itching I reached down to scratch my leg and I had a tick on my calf. I applied alcohol and got the tweezers to get the tick off, no problem. I know for many this may cause alarm but in NC when we have warm periods ticks will be out and I had been walking in the yard that day so it came from being outside on a nice sunny March day. I really didn’t think much about it, just put antibiotic cream on the area and left it at that. Later on Saturday night we were at my parents and my leg hurt. I went down to rub it and I could feel the heat through my jeans . I pulled the pant’s leg up and saw that the area was really red. Just as a precaution I drew an outline around the area to see if it got bigger later that night. Then my husband and I went on to the movies because we had my parents to watch our babies and I wasn’t going to miss the opportunity to go on a date with my husband.
After the movie we went for ice cream and I noticed I felt really light headed, a little nauseous and just woozy. The next day I did go to UNC urgent care and they did blood work and took a urine sample. They didn’t think it was anything but maybe a virus I could have contracted from the tick but started me on Doxycycline just in case the tick could care rocky mt. spotted tick fever.
The place on my leg never cleared up and just became a slow healing sore. It was around this time I noticed that I started to have edema in my legs when standing. My feet and legs would swell to the point of bruising along my sock line. The edema was pain and made it very uncomfortable to walk. This had not been that much of a problem in the past unless I was pregnant. I slowly began to fall apart body part by body part.
APRIL – MAY 2004 (wt. 155-160 pounds size 12)
I now started to get back pain along with the edema. My symptoms felt very similar to an urinary tract infection except I had no burning when urinating. Having an UTI and being nonsymptomatic is not uncommon so I was treated for what was thought to be UTI’s on 2 different occasions between April and May. These rounds of antibiotics were followed by diflucan and/or terazol cream because it seemed that I would always get a yeast infection. During these months I also kept a sore throat and lost my voice on several occasions. I attributed this to being around sick patients and having to speak a lot.
In late May early June I was at work with my swollen ankles and aching back when I realized I could not remember what I had done for the last 30 minutes. It sounds weird and even harder to explain but it was like “poof” my mind cleared and I was very confused as to what I was doing and how long I had been doing it??? I liken it to blacking out but being able to stand-up. I mean I was at the pharmacy counter and I had the computer in front of me but it was like I just woke up?
I looked around afraid someone was looking and think I was losing my mind but no one seemed the wiser. I told another employee that I needed to step out of the pharmacy for a moment. I went in the bathroom to wash my face and to get a grip on what was happening. I had very bad back pain and thought I needed to use the rest room. I urinated and had more pain then urinated more and felt better. I was suddenly exhausted. The pain had eased up but I felt wiped out. It reminded me of labor. I thought I noticed small stones in the urine and believed them to be kidney stones. I got some cranberry juice and crackers and felt better within a hour but just tired!
The incident bothered me so I thought if this happens again I am going to a physician and have it evaluated.. The pain hit again at work about 2 weeks later and when I got off work that morning I went to the closest doctor which was a “doc in the box” but I just wanted my antibiotic and pyridium then be on my way. Since I was a new patient for them I was sitting there in the waiting area and I was supposed to be filling out the paperwork. I was having difficulty because my mind kept wandering and that isn’t really a correct way to describe it because it wandered to nothing. I would look down at the paper and have half a word then scribble…scribble. I would think , “Ok Dawn straighten up and get this paperwork done.” So I would go back at completing the forms and then “wake up” to find I had faded out again. I looked around because I thought I must be nodding off and people would be wondering what is wrong with me. But either they didn’t notice or didn’t care. I went in to see the doctor and the staff said nothing about me not completing the paperwork. I told them I just felt so terrible and my head hurt. This was true but not fully the truth. I told the doctor of my past few months same thing blah, blah…give me some urine…blood and protein in urine…cipro, pyridium and some lodine for your back. I got my meds filled and started to drive home. It is a hour to a hour 15 minutes to home from work. I take my antibiotic and drink some water before I start the drive. About 30 to 40 minutes later I sort of wake up changing lanes but it wasn’t like I dosed off but more on auto-pilot. I was woozy again and getting a little closer to the cars bumper in front of me than I had intended. I kept thinking I just need to get home and go to bed. I was sweating and my clothes were soaked. I remember thinking gosh this UTI is kicking my butt. It was like I was awake but not really with it fully. I didn’t have the good sense to pull over and call my husband I just kept thinking it will pass.
I was passing cars to get home sooner and trying to get around this log truck in front of me. He had a truck full of logs sticking out so I remember thinking I can’t get too close but I need to get around him because I Need to get home. That was my mantra. If I can just get home…I need to get home and I didn’t have an ruby slippers. But I did have my red jeep. I can only imagine what I must have looked like. Some sweaty, crazed, women driving down the road chanting I just need to get home. It isn’t funny but it is now that I am home safe and no one was harmed. Especially, when I tell you that it was at this point the man driving the log truck in front of me stuck his hand out of his window, slowed down and waved me around him! Now if you know truckers it is rare they even notice you much less do such as I experienced. The only thing I can reason is he thought I needed help.. which I really did! I got home stripped off my clothes fell into bed and went to sleep. When my husband got home at 6-7 PM he woke me I mumbled call in for me at work and I went back to sleep. I awoke that night around 10pm picked up my clothes still wet from earlier that day and got some water to drink. I still felt confused and groggy. I was having a difficult time talking. I took another antibiotic pill and told my husband what happened. He of course said next time pull over and call him. I went to the bathroom around 11 pm and then I felt better. It was like a light bulb had switched on.
JUNE 2004 (wt.160-165 pounds size14)
There were times now that when I got off work I would be so tired that I would just check into a hotel right beside the pharmacy because I was afraid to drive. It was about this time I noticed the weight gain. I had stayed in town after work and needed some clothes for work that night. I went to Old Navy bought a shirt and a pair of pants without trying them on. When I got up at the hotel that night and got dressed I noticed these new pants were snug. I went on to work thinking well I have my lab coat on over them. I remember it got hot and I had all the fans on but had to break down and take my coat off. Then one of the other girls started joking with me about trying to show some “booty” as she put it. I laughed and said no they must have changed this style of pants because I always buy a size 12 in these pants. Well, I had to get a size 14 in those pants because a size twelve no longer fit. It would only be a matter of months when you could invert that 12 to 21 and you would be close to my new size of 22.
My symptoms continued and so did the list. I now could add what felt like heart palpitations, tachycardia, anxiety, trembling, difficulty speaking my thoughts, acne (which is something I have never had), extreme bouts of fatigue, a rash that would come and go, burning on the palms of my hands and feet. My clothes would hurt my skin at times. I felt as though I was coming apart layer by layer and my skin was leaving me first. But my foggy mind bothered me the most! I decided I needed to focus on finding out what was wrong with me and stay within one healthcare system to track my changes. I choose UNC and started seeing one of the offices in my town of Pittsboro. My first visit I went over what my recent problems had been and told the physician I also needed to be tested again for Rocky Mt. titer. It was 3 months since my first one after the tick bite. The physician talked with me and really didn’t have much thought as to what was going on and I told him that the antibiotic seemed to help last time but my symptoms returned and I now had more problems. He asked if the urine had every been cultured out for bacteria and I said not to my knowledge that I was just going to whomever was convenient and there had been no follow-up. I gave an urine sample that day and he came back in the room to say my urine looked terrible, blood, protein, ketones, bilirubin, everything but the kitchen sink. I thought well good then that is the problem. Oh if only I knew. This was no where close. Another round antibiotics started along with the obligatory diflucan and terazol cream. Then the call one week later saying there was no bacteria cultured out in the urine!
JULY 29TH,AUGUST 14TH 2004 (wt.175-185 size16-18) I’m So TIRED !!
My life began a cycle of crisis health situation about every 2 weeks. I would try to work and handle my life as normal but no matter how hard I tried the back pain would come on and the “blacking out” while I was awake would strike. I now had terrible painful acne both physically and mentally. I was embarrassed at my acne and the sores on my left arm. I thought they made me look as if I didn’t take care of myself. This is not the image anyone wants to portray much less in the health care industry. I noticed that the sores on my arms and legs looked very similar to the skin issues that iv drug users present with and it made me even more self-conscious.
I went in on July 29th due to the back pain and skin lesions. There were several other issues but these were the most concerning to me. I was now wearing a size 16 to 18 depending on the cut and these were the clothes I had worn while Pregnant back in 2000. I just didn’t have time to really focus on the weight gain because I was too busy working, trying to make it to physicians appointments and rest. I ended up in the ER on August 14th 2004 because I just felt like I was dying. I know this is not a specific symptom but that is way to fully describe my current situation. My chest hurt, my back hurt, heart racing (130 beats/min), BP 140/90, bilateral edema, acne, skin lesions/papules on arms-legs, flushing of face, skin would burn and I had a rash that would come and go, mood swings with severe aggression, FATIGUE (how many ways can you say I am tired)??, decrease in cognitive function, trembling of hands and weight gain.
SEPTEMBER 2004 (wt.190-195 lbs size18 ) It’s Not my Bladder! I had been doing research at this point and thought I must have some sort of auto immune disorder. Lupus, hypothyroidism, diabetes came to mind and I wanted to rule these diseases out. The only symptoms that seemed to impress the physicians were blood, protein in the urine and the fact that I was anemic. Not the weight gain or the fact that now my size 12 pants at Old Navy were a tight 18 and that was 4 months ago. The exact same pants! The scales were now reading 190-195 that back in February of this year read 150-155. But I felt like I had gained much more than 40-45 pounds and I am sure I did because I was losing muscle mass so fast. Since muscle weighs more that fat the loss of muscle was fudging my weight gain to show it as less. But I could tell because of my clothes!
I went back to UNC satellite office in Pittsboro but saw a different doctor. At our first meeting he appeared genuinely concerned and asked about my bladder infections. He asked that although they came back negative for bacteria did anything make them feel better. I said well I know this doesn’t make sense but honestly the antibiotics helped but the problems came back about 2 weeks later. He went on to say that there is a new theory that some bacteria in the bladder can incorporate themselves into the bladder cells so that it is not detected on a culture. He said we need to rule out interstitial cystitis and did an order for a 24 hour protein urine and to see an urologist. The weight gain could not be due to the thyroid because my thyroid levels were normal I was told. The fatigue may be the anemia because my iron levels were low along with my HCT, HGB but my MCV was normal. The anemia was never really worked up and I continued to have “normal” lab results.
I went to UNC and I did see an urologist and my bladder. He showed it to me during the cystoscopy . I had gained 11 pounds between my MD visit 2 weeks earlier and my urology appointment. No one seemed to care but me and I commented on how bloated I was feeling. Dr. Carson said my cystoscopy looked good and I should return back to see my PCP that had referred me regarding my Prothombin time, ct scan and protein test. So when I got home I called my PCP and left a message with the nurse that I needed to discuss the results of those tests and options with the doctor. I was tired and laid down to rest. I awoke a couple of hours later and the nurse had left a message that the doctor said those tests were fine and follow-up in a month. I just cried! I couldn’t live another month. That is exactly what I thought. I called my husband crying (which I never do) and he said he would call me right back. He did and said he had called the doctors office and said he wanted to know why they would say everything is fine when Dr. Carson had given us copy of the test and told us to speak with our PCP on the items marked “out of range”. Then nurse made us an appointment, because me husband wanted to be with me, for 9 am the next day. So now I am going back in to see the “caring doctor” that I saw only earlier this month. From the moment he walked in the room I should have just got up and left. But to be honest I was too tired to fight. I had been in and out of physician’s offices more than I have even elaborated on due to all the labs, tests, doctors from the beginning to now. But anyway he walks in and sits as far away from me and my husband as possible.
This room was rather large and we were seated with the examining table between us and the doctor over by the door. He starts by asking why we were there today. I say well to discuss my labs. He shuffles my file and says ok which ones in particle. I say ok well I was told my urine protein was normal from the 24 hour collection but I see here in MY COPY it says 280 with less than 200 being normal. Well he goes on to say that we really don’t get concerned unless it is over 300. Brad, my husband then says then why aren’t the normal ranges up to 300 instead of 200? No reply. He looks miffed and says what else. I say well what about my ct scan? He says well Dr. Carson stated that your bladder looked fine and I said yes but what about the cysts, spleenomegaly and the mass or hematoma at my liver? He then says well you know more about than I do. Real smart and says he doesn’t have a copy. I told him I had CT done at UNC. That is why I am staying within one healthcare system, I say, because you are all linked by computers and he should have a copy of my scan or at least access. He leaves the room. Comes back and says that the remarks didn’t really mean anything really and the scan didn’t show any relation to my host of symptoms. I ask about the blood in my urine. He says some people just always have blood in their urine. He then says it may be virus. Just to wait 30 days then come back. I start to cry. I hate myself for doing so because I don’t want to look like a weak, neurotic, anxious female, but I am so tired! I tell him everyday I wait I am robbing my children of a mother and that I can’t even do anything but sleep. He hands me a tissue.
OCTOBER 2004 (wt.195-205 size 20) Why will no one Listen??!!
I go home to wait for my virus to leave and get sicker and sicker. I am now hardly able to work and my employer along with some of my colleagues are wondering out loud what is going on with me. These people seem to forget how much I did for them before, but that is a different story.
I am driving home from work one day and had stopped to pick up some gifts since I felt good and needed to be thinking ahead for the holidays. I finish my shopping and realize I have spent more time and money than I intended to on shopping. I start driving home and about 45 minutes later I start feeling tired. So I stop at a gas station and decide to buy a drink and notice they have some neat “penny” candy so I get some for the kids. I remember talking to the attendant and then I ask for the bathroom key. Get my bag of things and go to the restroom. I then sort of wake up in the bathroom but I didn’t faint like on the floor (thank god-public restroom) but I was just sitting there and have no idea how long I had been there. I didn’t have a watch and I thought get it together and get out of this bathroom. I sort of shake my head wash my face and go give the attendant the key back. He looks at me odd and doesn’t say anything although we both had chatted so much earlier. I take that as a sign that I had been in the bathroom W..A..Y..too long! I got in my SUV and drank some of my mountain dew, to wake up. I decide to eat some candy for a sugar boost. I remember opening the bag, dumping the candy in my lap to pick the piece I wanted. Then nothing I look up with my keys in my hand thinking how long have I been here? I look towards the store and the attendant is inside looking at me-like what are you doing-? He then picks up the phone I assume to call the police because some crazed, candy eating, mountain dew drinking women is nodding off in his bathroom and parking lot. I start the jeep to leave. I start driving by now it is starting to approach dusk and cars have turned parking lights on. I remember that the cars tail lights in front of me seemed to “melt down” like the tail lights red color was running down to the road. Ok I know this is weird and I didn’t know what to do when I remember my husband saying, “Just pull over and call me!” I get out my cell phone and hit redial-thank god because I don’t think I could have dialed his number. I call my husband and say, “You have to come pick me up.” He says where are you? I tell him I don’t know and at that moment I didn’t. I couldn’t even formulate the words or go thru the thought process to say “I am on hwy 87 right before you get to 15-501”. I just said somewhere between Fayetteville (which is work) and Sanford (which is about 45 minutes from work). He said, Honey can you be more specific. I think he is yelling so I start to cry and then I get mad so I tell him never mind. He says, “Honey I don’t mind coming to get you and I am not yelling but can you tell me where you are?” Then at that moment I see a Lowes sign and pull into the parking lot. I say Lowes in Sanford and hang up the phone. I sit back and then the next thing I know Brad my husband is knocking on my window. Now the rest of this is what Brad has told me. He said I was like sitting there with my eyes open but not really focusing. I got up and tried to act normal. I told him I needed to get the gifts out of the back of the jeep because I didn’t want someone breaking into the vehicle. He offers to help but I say no I don’t want you to see the gifts (some were for him). He says I go to the back of the jeep and open the back. He says 15 minutes later he comes back there and says what are you doing? I was just standing there and I get all defensive and say I am getting things although I am not doing anything. He finally says come on lets go and I grab the bags. I get in the car and talk with the kids trying to tell them not to worry Momma is just tired. I want something salty I say and he gets some fries I eat them then zone out. He says I would talk but that my eyes were not focused and they would roll back in my head. I know crazy and I don’t know what made him stick around. LOL. I went home crawled in bed and woke up all sweaty, back hurting and thirsty about 8 hours later.
It was then we decide that I need to take some time from work to rest and see what is going on with me medically. It was just too dangerous for me to drive.
DECEMBER 2004 (fluctuating wt.195-205lbs size 20) Someone Please Help Me!
It is now December and I am looking over the past few months of my life.
Past 6-8 months has noted the following changes:
• Abdominal weight gain and upper torso across the back increase. The weight gain from March 2004 – end September/October 2004 was 150-205 is in the range of 50-55 pounds but pant size from 12- size 20 by December
• Hematuria at 2+ to 3+ documented since March 2004
• Protein noted in urine since March 2004
• The above findings lead to 3 tx with Cipro 500mg for UTI. Finally, my urine was sent for culture which proved negative for any unusual flora. Thus a trip to an urologist for a cystoscopy that showed a normal bladder.
• 2 ct scans with contrast before my cystoscopy that didn’t warrant concern by the clinicians.
I have been forced to take a medical leave since October 2004 due to my decline in health that has resulted of unknown origin other than a “VIRUS” which is what my GP has determined.
I would go to doctors and feel like I was preparing the defense case for a trial. I mean I really had to defend myself and this was not your normal Hall of Justice. In this system, behind the physician's office doors, you are Guilty until proven Innocent. The problem is I didn't and still don't know what I am guilty of besides wanting my health back! I am not one to overreact and feel that a person knows when something is not ‘right’ with their body. This is a scary predicament in itself not to mention the concept of living with the all of these health issues. Things didn't move forward and it became impossible for me to hide how difficult things had become for me physically. That is when I began to avoid my family because it took too much effort to pretend that I was "FINE".
Most friends and family think that I am just going through a phase of depression I did have to deal with a very difficult loss a few years back with the death of our baby Cameron. The other twin Chance is now three and totally healthy but the loss of his baby brother was a difficult time for me and my husband. The irony is I did have depression over the loss and sought help but didn't tell anyone at the time because of the stigma attached to emotional disorders. Now my family sees me being sick and believes it is because I am just depressed.
The holiday in 2004 was a challenge being sick and dealing with my family. Comments would be made about “what is wrong”, “what did the doctors say”, and are you going back to work? I was more sensitive than ever and would get angry but hurt too.
I have worked since I was fourteen and never taken any significant time off except during maternity leave. I worked while in college and even paid for my schooling. But now my family believes that suddenly "poof" after 35 years of being a productive, energetic, healthy, self-sufficient individual I became what???? A lazy, hypochondriac with no self-control. I told them how the comments bothered me and at this time in my life I could not handle the additional stress of getting so emotional and that was why I had distanced myself. By the first of the year I stopped trying to explain because it took too much energy and just ABOUT gave up!
JANUARY 2005 (wt.195-205 size 20-22) Found Help at This Site!
I am not sure exactly on the size of clothes because I spent most of my time in sweats or lounging PJ’s because they were the most comfortable and they fit! I really thought "I can't live like this anymore." (At this point I didn’t know it but I had all the symptoms of Cushing’s except striae and just some chin hair- not enough to impress the docs).
I honestly prayed to God and asked him why he was doing this to me when I always went out of my way to help others and give of myself to them. I was referring to in my professional and personal life. I felt so hurt and confused with the lack of empathy or guidance I was receiving from Doctors or God (I thought).
So why were the doctors not helping me? Then I got a peaceful feeling and heard in my head not a real voice. Ok...I hope you don't think this weird. I am not a religious freak but this is how it happened.... So I heard this voice or phrase in my mind "Do for yourself what you do for others" The phase may not be bible-worthy but that is what I heard. It may have just been my inner self the real me peaking through or maybe She (God) was telling me that I had to be my best advocate like I was an advocate for others who couldn't be. So why was I not doing the same thing for myself? Good question I thought. Here I had been relying and trusting the doctors because I was so scared of what was happening that I had forgotten to really research and question my situation. That is when I rediscovered the disease called Cushing’s!
I stumbled upon this site listed when I googled my whole host of symptoms on the search engine and up came "Cushing’s". I had studied endocrinology briefly in pharmacy school but we didn’t spend much time on the disorder. The first thing I thought of when I say the word was “spider”-big body with thin arms and legs. That is all I could remember from school. I then read more which lead me to this site and I have returned time and time again. I can remember reading the Bios for the first time and just crying because my heart actually hurt for the person. I felt as if a weight had been lifted because I found out I was not alone and others had faced the same problems. Not only have they been in my situation but they have come out the other side stronger!
That was the day that I really started to pursue the testing needed for a Cushing’s diagnosis. I want to know what is causing my illness whether it is Cushing’s or not I MUST not give up the search. I learned that from all of you!
My new year was filled with research and searching for a new physician. My thought process was if I am going to get better I am going to have to find the answers myself and a physician that would not give up looking for the answers.
I now had the name of the disease CUSHINGS but I needed a physician. I found her and she agreed that something was definitely wrong, because she is the pediatrician to my children and she knew that I was not the same person she saw a year ago! We set out to run blood work, back x-ray (due to flank pain), urinalysis (blood and protein still), antibody tests, cardiac enzymes and stress tests. After no answers I brought up the endocrine issue and she said I could be on to something. I insisted that it had to be hormonal and then brought up Cushing’s. She said maybe and referred me to the Endo. SO that is who I saw in Feb. 2005
FEBRUARY 2005 (wt. 205-210lbs size 22) Going to the Endo!
I went to see an Endocrinologist at UNC and I was ready. I had my list of symptoms. My articles printed from endocrine journals, endo sites and this site as well. He did spend a good deal of time listening to my symptoms but did no real physical exam. He didn’t seem to be concerned with what labs were drawn as far as accuracy in capturing findings of Cushing’s. He also did give much value as to the time of day or if you had fasted as far as affecting the labs. Everything I had read stated that certain labs would vary depending on the time of day they were drawn and in fact their normal ranges reflected that specific time-frame. Below is the basic list of what my symptoms had grown to by the Endo visit and what I considered possible reasons. He didn’t really want me to show him my list and other items I had brought with me.
He sent me home with a jug for my 24 UFC test. I pointed out that the consensus for diagnosing Cushing’s disease were three UFC’s in a row in case someone is cycling. He commented that I had done one UFC a month prior. Yes, I had done one UFC 24hr test from my new PCP but the lab did not calculate the creatinine for the urine. I said given the fact that was not done the test could not be ruled as valid. He didn’t say much regarding that issue but talked about the preservative..blah..blah..the lab used did not allow for creatinine calculation. Let’s just see what this one shows. He also gave me a prescription for dexamethasone. I told him I felt as though I was in a low phase and would do the 24 UFC and then the dexamethasone once I felt there was a change to another high phase.
I returned to my PCP two days later because I was concerned about the lack of promise I was seeing in this Endocrinologist. She asked did the Endocrinologist relay that he thought my symptoms were not endocrine related." I said no I had not spoken with him. She then went on to say that maybe it was her fault that she hadn't brought this up sooner and had over looked the fact that I was on Effexor XR but could I be (ok the crazy word on the tip of her tongue) BIPOLAR? I said no I was being treated by a psychiatrist, Dr. Peterson, for depression and had been for 2 1/2 years. I had even mentioned the disease Bipolar to him myself because of all my physical and emotional changes. He had told me definitely not that depression doesn’t put blood ,protein in your urine or make you anemic. I relayed this to her. She then asked for his info (which I had given at first appt) and I gave her his card and information. Told her to contact him since he was the SPECIALIST.
I asked for a copy of the labs the Endo had obtained. The results were not back yet? Hmm....so let me get this straight he ruled out it being endocrine related and decided it was mental with one lab being back? So who is crazy? I was so mad. But couldn't show it for fear of looking "crazy". I should have known this endo was a &*@$&. He didn't look at my hump or even do a real exam. I had brought in pictures of some faint striae I was getting because it was on my buttocks not my tummy. He looked at them and put them in my file. But I read later in his dictation that "I gave him pictures of striae but it wasn't on my body". Ok unless he had x-ray vision how would he now?
Well my PCP wanted me back to see how I was doing in 4 weeks. I schedule the appt and before my next visit my health did a total 360 degree change.
My acne went away, my head cleared, the heart palpitations were gone, I could sleep at night etc...I actually had a craving for FRUIT. I couldn't remember the last time that happened. My husband and I both noticed so now I am confused until the light came on. Ding! Ding! I am pregnant. I kept my appt with PCP and the first words out of her mouth were, "Gosh you look good, like you feel better." I told her I am pregnant. She said, 'Maybe your body needs more estrogen." Duh… like less androgen. "That's a hormone is it not?" I say trying to take make a stab at her Endo buddy. She said, "You will just have to stay pregnant." like ha ha.
So I felt good and the pregnancy went along. When I say good this is to say the best I had in at least a year but not like years before. But a drastic improvement over my recent health!
APRIL 2005 (wt.227 lbs size lrg maternity clothes) Dr. F Visit in LA
Since I had not been impressed with my healthcare in 2004 I had made an appointment with Dr. Friedman when I first learned of his work from this site in January 2005. He was booked until April so I made the appointment and waited. I had found out I was pregnant but thought it could not hurt to at least go talk with him and get his opinion. I was very impressed with his knowledge about the testing and problems of getting a correct diagnosis of Cushing’s disease. We were not able to do nearly the testing needed because of the pregnancy but knowing he was out there in the medical profession gave me hope. He formulate a plan regarding my case.
-Sheehan’s syndrome since I had a headache and neck pain after pregnancy in 2002 suspected a growth hormone deficiency with relatively low IGF-1 and that during my current pregnancy I am making human placental lactogen which stimulates IGF-1. So that is why I feel better now that I am pregnant.
-Periodic Cushing’s syndrome and I am now in a more normal period after being in a high before her pregnancy.
-The third possibility is Lyme disease. Due to protein and red cells in her urine I have a positive ANA of 1:160.
The plan was a pituitary MRI tomorrow, nighttime cortisol and ACTH level, bioavailable and total testosterone levels, ferritin level, thyroid function tests, and IGF-1 level also do 24-hour urine for urinary free cortisol and 17-hydroxysteroids. We could not do a growth hormone stimulation testing while I was pregnant.
We ran into problems with doing the MRI with the hospital radiologist. Dr. Friedman felt that since the hospital had INSISTED ON DOING MRI WITHOUT CONTRAST and only for 10 minutes DUE TO PREGNANCY, it was not TOO HELPFUL. IT WAS READ AS NORMAL but DR SHAHINIAN (THE PIT SURGEON) COMMENTS were “collison¹s study is impossible to interpret due to the lack of contrast, I would just repeat it after she delivers.” “My SERUM CORTSIOL AND ACTH AT 11 PM WAS LOW,ARGUING AGAINST CUSHIGNS, BUT 2 URINES WERE HIGH” per Dr. F He said, the UFC OF 55 is high and supports Cushing’s but to do the salivaries and we would need to repeat the MRI once I delivered to begin a definitive treatment.
My IGF1 AT 152 is low and it should be raised in pregnancy so it is actually lower. Dr. F then said, “WE NEED TO DO A GH STIM TEST, BUT THAT SHOULD ONLY BEEN DONE AFTER YOUR DELIVER AS IT COULD BE TOXIC TO THE FETUS YOUR FREE T4 IS LOW AND IT SHOULD BE HIGH AT THIS STAGE IN PREGNNCY SO I WOULD START THYROID TREATMENT-125 MCG OF LEVOXYL. IT WILL HELP WITH THE FETUS DEVELOPMENMT. I CALLED IT IN. GET ANOTHER SET OF THYROID TESTS IN 6 WEEKS. FERRITIN -IRON STORES-IS QUITE LOW-I'D LIKE IT AROUND 70. THIS IS ALSO IMPORTANT IN PREGNANCY.PROALCTIN IS APPROPRIATE FOR PREGNANCY TESTOSTEORNE IS OK”
I was so elated to have a plan and at least a start to finding answers. My pregnancy progressed and I went into labor early in September. I did have spikes of high BP and of course the ever present blood and protein in my urine. My thyroid free T4’s were in range thanks to the 125mcg levoxyl that Dr. F had prescribed.
SEPTEMBER 2005 (pregnancy wt.280 size 3x maternity) I am going to Explode!
My ob/gyn was keeping a close watch on my blood pressure and protein in my urine. I had a spike in my blood pressure to 160/90 and he had me do a 24hr urine protein sample. It came back the next day after I completed the test and I had 3,000mg of protein that’s right 3 grams of protein in my urine. He wanted me at the hospital by lunch to do a C-section. Before the C-section my BP was 177/110 pulse 130 and then after delivery I immediately felt nauseous on the table. I told the anesthesiologist that I felt “funny” she said your BP just got really low and she was trying to regulate it now. This was a problem for the next 5 hours. Blood pressure up and down. It would be 60/40 then they would give me something to increase it and then it would jump to 170/100. Although we delivered a month early we had another 10 pound 6 ounce baby but this one was a baby boy named Caleb Dean. I went home feeling pretty good and Caleb was nursing then my hormones crashed.
NOVEMBER 2005 (wt.260 size 1x maternity) Can’t lose weight!
I was ok until about November. I had an acne flair and the telltale chin hair. My moods started to swing from one extreme to another. I remember dropping things several times one day and I started to cry because it was back. I was afraid this time because I knew it would get worse and I was watching the changes in my body like someone waiting for the other shoe to fall. I noticed that the acne cleared up once Caleb got his nursing down better. I also did not have to shave under my arms or legs but like once to twice a week. My hair was finer like it was before this whole illness started back years ago. I am not losing weight although I am nursing the baby and hardly eating. Granted I am not out running but if you have a 2 month , a 3yo and a 4 almost 5yo, you don’t need to jog to get exercise!
JANURARY 2006 (wt.260-270 size1x-3x maternity) Still in maternity clothes-gaining wt!
This is crazy. I am now gaining weight and back in larger maternity clothes. What the &*%$?? How can I be gaining weight when I am eating less and nursing a child?
Then like a rerun to 2004-2005 things started to get worse and almost a year to the date when I first found and joined this site I finally posted comments because “IT” the illness was back. That is how I got here again. I had looked into going to OHSU because although I felt Dr. F was knowledgeable I needed to use a facility who my insurance would consider as in network. I still was not working and didn’t have any plans to return back to work any time soon.
I contacted OHSU via their website and provided the information requested. I then got an email from Dr. Ludlam to call Lynne, his clinical coordinator, to set-up a phone consultation. I did and he was very nice on the phone. I went into all my symptoms and he said they would accept me for the 5 days of testing. I got my ob/gyn to refer me to OHSU and we set the appointment for February 24th 2006.
FEBRUARY 2006
I noticed that when I would nurse it seemed to calm me and we keep the physical changes somewhat at bay. I thought I may need to wean Caleb because of any medications I would need to take and the whole testing process. I started to wean him and the symptoms flooded my body.
Headaches almost daily, odd sense of smell, acne with painful bumps under the skin (cystic acne), vaginal dryness and irritation, sensitive teeth, bright striae, my c-section scar was bright red and would hardly heal, I overly produced milk from 2 days postpartum and I found it difficult to control the weaning process. The hair under my arms has gotten darker and harder. The hair on my legs is now darker and seems to grow fast but only out of about 20% of the hair follicles. It is sparse but darker and I have to shave frequently again. My moles and freckles got darker. My hair seems to get greasy at the roots but dry on the ends. My skin will bet oily suddenly and then at other times it is dry. My sleep schedule is so erratic that it is difficult to really see any sort of pattern to the ups and downs.
I am days away from my appointment with Dr. Ludlum at OHSU and I am nervous about what the outcome may be but that no matter what answers I find I must at least strive to find them. My kids ask me when will I be better and it breaks my heart each time they worry about me. A child should not worry about their momma but be carefree in their precious younger days. I hope to be able to give that to them soon. I also hope to be the wife I was and can be for my husband. He has always supported me and without him believing in me I don’t think I could have listened to my inner voice that kept telling me that I am SICK! Listening to my inner voice seems to get more difficult the more I pursue a diagnosis.
The person that I am now is not the person I was 5 years ago. That statement doesn’t even begin to capture how my life has become one that consists of everyday struggles. The struggle to find answers for the illness that is taken its toll on my body. I struggle to focus my mind long enough to do research several hours a week. I have to struggle through endless doctor’s appointments where I am met with cynicism and arrogance. I struggle daily to put on a “happy face” so that my family will not see my pain. Finally, the biggest struggle is within me. How do you keep a positive outlook when you are so angry because your body and mind are letting you down? My story is one I hope that others don’t have find themselves living one day but if they do maybe by sharing my struggles it will help them realize that they are not alone. This is not a fairytale so there will not be any “happy ever after” but with perseverance there will be a “getting better everyday!” You may stumble along the way and there will times you want to give-up. Take the time to rest and heal then pick yourself up again. Because if you give up they WIN!
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