Doctors & Hospitals

Dear Diary,

Bright and early this morning, I had my annual mammogram. Since my sister’s breast cancer diagnosis in 2013, mammograms have never been the same, emotionally. Physically, yes, my breasts and chest still hurt after getting flattened like a pancake.

But, emotionally, I can’t help but think about my sister and how she was diagnosed. While she was taking care of another appointment at Kaiser Permanente, the nurse looked at her electronic file and saw that she was due for a mammogram. My sister is faithful, as are my mother and I, in getting annual mammograms because we’ve known several friends who’ve gotten the disease. The nurse, then, saw that there was an opening for a mammogram that day within 10 minutes, and urged my sister to go ahead and get it done that day.

She thought nothing of it, did it, and carried on with her busy day. Within two days, they called her, told her they saw a lump that needed to be biopsied. Again, she went and had that done, and carried on with yet another busy day. The next day, we all found out that the lump was breast cancer that had spread to her lymph nodes.

The fear in her voice as she shared the news with me was so familiar to me. I felt that I was in a unique position to support her and calm her down as she so often has done for me after I’ve received horrible medical news. As a family spread all over the country, we prayed during conference calls and kept track of every treatment along with her. Thank God we can all now say that my sister is a breast cancer survivor—woot!

But, the words breast cancer have never had such a personal meaning, and hearing them and the word mammogram still shakes me up.

As for my mammogram today, I pray that they successfully seek out any and all little lurking lumps that could be deep within these dense breasts of mine. While they look great for a 51-year old woman, all perky and voluminous, the reality is that dense breasts are six times more likely to grow cancerous tumors than non-dense breasts, according to BreastCancer.org. The site also says that dense breasts can also make it harder for mammograms to detect breast cancer because “breast cancers (which look white like breast gland tissue) are easier to see on a mammogram when they’re surrounded by fatty tissue (which looks dark).

After my mammogram, I realized, gratefully, that it’s Thursday, acupuncture day! I arrived early to give Dr. F a copy of the results of my tests for Lyme disease co-infections.

Our normal acupuncture sessions are usually swift and efficient so that she remains on time. The receptionist takes me to one of several rooms filled with the sights, sounds, and smells of tranquility. Then Dr. F comes in and asks me what hurts the most. She proceeds to precisely “poke” me (as my Hubby says) with the acupuncture needles.

Today, the routine was a little different. We actually took a few minutes to talk about the latest with the Lyme disease tests. She’s so amazed at how this is unfolding—with the positive tests for active Babesia duncani and Bartonella. I am, too. Once we were done talking, she proceeded with the normal routine. Needles in. Heat lamp on my feet. Soft music on. Lights out. Ahhh, needles do your thing….

Love,

Olivia

Dear Diary,

I am a difficult case. This morning felt like Ground Hog Day, the movie. I woke up, took a shower, dropped my Hubby off at work, then made my way to the lab to get my blood drawn. Just like yesterday.

Thankfully, the result with this independent lab was much better. The middle-aged woman, who greeted me behind the glass window, was friendly. She said she’d be right with me, but it would be a few minutes. There was a big husky gentlemen ahead of me, who must have been there as soon as the doors opened. After I sat down, she called him back, and I could hear him say how he never has a problem with getting his blood drawn. He said, “Thankfully, I’m not a difficult case. But, I’m sure you deal with difficult people all the time.”

I was so happy to hear her respond that they’re prepared to deal with the hard ones (like me) and that they always do what it takes to get the job done. So there, take that, Husky Man!

After he left, I told her that I was known to be a difficult case from time to time. She laughed and told me that she’d heat up my arm to get the veins ready. I’d learned in 2009 during my visit to UCLA’s Medical Center that putting a heat pack on the veins makes them pop up as if you’ve done exercise. It was a relief to learn that she knew what she was doing.

Instead of a heat pack, though, she used an electric heating pad for a few minutes. Once things were ready, she was in and out with two vials filled with blood. One poke. No worries. Thank God.

The next thing was just to wait for the coagulation and spinning. After that, she packed up the tubes. We filled out the forms and boxed it all up. I dropped it off at the FedEx center for mailing out today.

I’m exhausted from all that….

While the first half of today was a success at the lab, the second half of the day, not so much. It was my fourth visit to the chiropractor. He continued his treatment plan of realigning my cervical spine, which he said has been affected by the Lupus. Because of the autoimmune disease, he promised to go slow, saying my body is on high alert and overreacts to everything.

But, he didn’t seem to remember his promise. He didn’t go slow during this visit at all. Unlike the first couple of adjustments after the original consultation, where he adjusted only one area, this time, he adjusted my neck, my middle back, my lower back, AND my hips! What the heck?!

I immediately had that God-awful feeling of shock. My throat seemed to tighten up, I had difficulty breathing, and I was in a daze.

It only got worse with each passing hour. It was hard to swallow, and I developed a sharp pain in the left pectoralis muscle in my chest. Within the next two hours my neck ached and throbbed.

While the chiropractor told me that we’d have a rollercoaster of pain and relief, I knew this pain was way more than expected and well outside of his band of “normal.” It’s just too much. I can’t even cry because I can’t breathe.

My Hubby keeps telling me to hang in there. But, I told him that I can’t go back to that chiropractor. Why in the world would I allow someone to hurt me when I already hurting on my own from the Lupus? No way! I just can’t do it. It’s never easy. Why do I have to be such a difficult case?

Love,

Olivia

Dear Diary,

On Saturday, I finally received the box with the blood labs requisitions from the Lyme doctor’s office. One requisition is for IGenex, the specialty lab in California, and the other is for LabCorp. Knowing that my insurance’s approved lab will not draw blood for IGenex, I knew I would have to go to two separate places to have my blood drawn.

It was going to be interesting having two blood draws in one day because I’m not the type of person the phlebotomists like to see. I’m considered a difficult draw. My veins seem to disappear the minute I enter the lab. I don’t know if it’s because it’s generally cold in there, or if I’m just experiencing “white coat syndrome”—you know, when a patient’s blood pressure goes up once they see the doctor. Only with me, it’s my veins, not my blood pressures. Who knows. Either way, it takes a very skilled phlebotomist to draw my blood. Knowing this, I hydrated like crazy yesterday and this morning.

So, when I arrived at LabCorp at 7:00 am, there weren’t too many people waiting. Thank God. I waited about 10 minutes and was called back. This phlebotomist was new. Never saw her before. I immediately went into my calm-yourself-down mode as I walked back to the chair with the special levered armrest lined with rubber tourniquets. Of course, it was freezing, but I covered myself with my coat until she was ready.

After tapping her screen, printing out labels, and organizing about nine tubes, she put on her gloves and proceeded to look for my veins. Left arm, right arm, left hand, right hand. Not much to work with, as usual. Back to the right arm. She found a good one, she said. So on went the tourniquet, and as I closed my eyes, in went the butterfly needle. Success! She tapped the vein and the flow was good enough to fill all nine vials. No problem.

On lab down. One lab to go.

Just down the street from LabCorp is an affordable family practice that charges $20 to draw your blood for an independent lab—as long as that lab supplies the requisition, instructions, and tubes. So, with my IGenex box containing all that stuff in it, I went to the family practice. Those folks are so very kind, but they always look a bit apprehensive when they see me.

The feeling is mutual. I first met them when I was having some allergy testing done by a different independent lab; and once more, when I needed blood drawn for the first Lyme test with the IGenex kit. Each time, the nurses there had such a hard time finding my veins. They didn’t seem to have the experience or skill to deal with a difficult patient. To get the blood I needed for both previous tests, they stuck me three times; in either of the hands, the arm at the elbow, or the mid arm.

Unfortunately, today was no different. This time the experience was pretty bloody. For some reason, each time she poked me, blood would stop flowing before filling up the tube, but when she gave up and removed the needle, LOTS of blood would come out. My hands and arms were stained along with the top of the student desk I was seated in.

I’ve learned to take these experiences in stride. It takes too much energy to get angry, and I don’t want to make them feel bad. They did their level best to draw my blood. So, I left there all bandaged up with four holes in me—the one from LabCorp, the other three from the family practice.

As I write this, my left hand is swollen and my left arm is badly bruised from the unsuccessful draws. My right hand only has a slight bump where the needle entered.

Well, tomorrow, I will look for other independent blood labs to get my blood drawn. I can’t go back to the family practice again. Love them, but…. Three strikes. They’re out.

Love,

Olivia

Dear Diary,

The last two weeks have been filled with more tests. Whenever I have a flare, like the one after our trip back East, my doctors get into gear, making sure that I don’t have any major complications with my heart, lungs, or brain. My heart and lungs have had their share of Lupus-related episodes, such as the pulmonary embolism and resulting scar tissue, tachycardia, and enlarged heart. So far, my brain has only minor vascular changes that cause manageable migraines once in a while.

So, I’ve had several days filled with medical appointments. Today’s activities started with a fasting blood draw early this morning where it took three phlebotomists to try to get into my tiny little veins. They filled 11 vials, I thought I would faint!

The next test was a painful nerve conduction study that revealed the beginnings of peripheral neuropathy (damage to my nervous system caused by the Lupus). I kept smiling even though I wanted to scream at my doctor each time she put one of those electrode needles into my muscles. Why do the tests that are designed to help treat pain cause so much pain in themselves? A bit of a paradox.

After that, I went to physical therapy, where she tested, for the umpteenth time, my range of motion, pain levels, etc. She just adjusted and realigned my hips and spine, and set me up for a heat treatment. So soothing.

Throughout this period of more tests, I’ve found solace in keeping up with regular acupuncture appointments. Not only in dealing with the pain, but also in managing the fear and stress that comes along with the uncertainty of how Lupus is going to strike me next. Even though it sometimes actually takes a lot out of me, I find peace in the exhaustion. It’s like my body is so relieved of whatever burden is released as the acupuncture needles open my neuro-pathways. Ahhh….

Love,

Olivia

Dear Diary,

It’s been one heck of a time for about three weeks now. I’m battling pleurisy—again. The Lupus is causing some very painful inflammation in my lungs and difficulty breathing. It seems like I never really got over the bronchitis, maybe.

It all happened last Thursday when Hubby had to take me to the ER. I woke up that morning after a very bad night of pain. Unable to lie down flat or take a deep breath without having excruciating chest pain.

They hooked me up to oxygen and an IV, always preparing to rule out another pulmonary embolism or any other life-threatening possibilities. Thankfully, those were ruled out. And after all the tests, they gave me Dilaudid, a very strong painkiller. It felt like a freight train running through my veins. In fact, the guy nurse told me to brace myself, while he tried to release the drug as slowly as he could. I stayed there for a few hours while the drug took over my mind and body. I have to say, though, that it made the pain only bearable. I could still feel the pain, even with that powerful drug.

Anyway, the doctor came in and told me that they suspected it was a recurrence of the pleurisy that I get from time to time. What triggered it this time is anybody’s guess, he said. If this is anything like the last few times, it’s going to take weeks to recover from it.

They suggested that I follow up with my internist as well as my cardiologist to rule out any cardiac involvement. I was able to see both of them rather quickly earlier this week.

My cardiologist preliminarily confirmed the ER’s diagnosis, but scheduled an echocardiogram just to be sure. This was my first time seeing this particular cardiologist, although I had been seen at this practice before. He said, “Wow, you have a great attitude given everything you’re facing.” I told him that I had to. It was the only way to live life with a chronic illness.

My internist’s response to the ER follow up was to yell at me and tell me that “this [the pain] is what Lupus does!” As if I were wasting her time. I left her office feeling defeated and exhausted. Doesn’t she know the amount of energy it takes for me to just get to her office? I certainly didn’t want to get there to be abused. I suppose it hurt most because I do like her very much. She’s the one who suspected Lupus in the first place. I chalked it up to her having a bad day.

She asked me to follow up with her during my regularly scheduled six-month appointment, which happens to be about a month away. Hopefully, she’ll be in a better mood.

Love,

Olivia

Dear Diary,

I just wanted to let you know that we received really good news at the doctor appointment today. The ultrasound revealed that the huge cyst on my right ovary has completely dissolved, disappeared, vanished! The doctor was stunned. So, despite the fact that we were all preparing for the worst, there’s no need for surgery at all. Thank God!

Even with that bit of great news, I’m resting in bed as I write this because I’ve been stricken with yet another bout of illness–bronchitis. Hubby had to take me to urgent care last Thursday. The doctor there diagnosed the bronchitis, gave me a round of antibiotics so that it didn’t become pneumonia. But, when I followed up with my pulmonologist on Tuesday, I still had a fever and chest pain; so, she gave me a second round of antibiotics. My immune system is so out of whack with the Lupus, and my lungs are so compromised since having the pulmonary embolism way back when.

I got a call from my rheumatologist yesterday about my blood work. Nothing too earth shattering, but the Lupus is still very active and one test shows possible kidney involvement. I read up on it, and it’s just something that has to be monitored like everything else, and I can help by drinking TONS of water, eating a more balanced diet (no more Paleo), and getting lots of rest. My rheumatologist is going to be increasing my Plaquenil, too.

Oh well, I’m sure the past few months of moving and other health-related stress didn’t help the situation. But, I’m not worried ‘cause God’s got this!

Love,

Olivia

Dear Diary,

It’s been nearly three weeks since my appendectomy, and I’m still recovering. I find myself sleeping during the day for several hours, especially after I’ve done any extra activity like going out to breakfast or lunch.

My incision sites are still bruised and last Saturday, I was surprised by blood seeping through my sweater, where one of the more painful incision sites started to leak. Yuck!

I followed up with my surgeon, and he said it was normal to have some leakage as long as everything around it was healing and that I wasn’t running a fever or anything. Geez, it’s always something, right?

This coming Tuesday, I will see Dr. T, my rheumatologist, for the first time since she called and told me to get to the ER. We’ve talked since then, once when I was still in the hospital and another time when after I got home. I asked her about whether or not I should continue with the Plaquenil, considering the appendicitis and all. She agreed with my thought that maybe I should stop it for now while I heal, then resume a few weeks later.

That’s one dedicated doctor, for sure. I’m grateful.

I sent thank you notes and cards to everyone who thought of me during my emergency. People from church to long-time friends of mine and of my Mom. I often wonder what they must think about my constant health problems over the years. I’ve been in and out of the hospital so many times. All I know is that, unlike the old friends who gave up on me for one reason or another, these friends are unconditional friends for life. Still recovering, I love them for that.

Love,

Olivia

Dear Diary,

I just wanted to tell you about my latest health crisis. Last Monday, I had severe abdominal pain that turned out to be appendicitis. I had to have an emergency appendectomy.

It was very scary because I’ve been on Coumadin therapy since the pulmonary embolism in 2008. So, to keep me from bleeding too much during the surgery, they had to give me a plasma transfusion to thicken my blood.

It all started on Sunday during church when I was having really bad abdominal pain. I couldn’t get any relief, and I thought it was the Plaquenil that I started taking for the Lupus. I spent the night searching the Internet to find out if abdominal pain was a side effect of Plaquenil. Some people had similar experiences, so I tried to sleep thinking that it was the new medicine.

But, that nagging voice in my head kept saying, it’s appendicitis. So, I promised myself, I’d called my rheumatologist first thing on Monday to get her opinion. I left a message, and within 30 minutes, she called back to tell me that it probably wasn’t the new medicine, and that I should go to the ER right away. I was already about to head there when she called.

Thankfully, I was in really good hands at St. Mary’s Hospital. The ER doctor was a little dry, and kept poking me in that area to see my reaction. I don’t know if he thought I was supposed to be hysterical or what. Not everyone responds to pain in the same way. I’ve been living with severe pain for a really long time now, so when I get pain, I go into a very meditative, deep breathing mode to handle it.

They sent me for a CT scan, and much to the ER doctor’s disbelief, it confirmed appendicitis. So, they prepped me for surgery, and I met my assigned surgeon, who happened to be a vascular surgeon. He explained that he would perform the procedure laparascopically, which was less invasive. I asked him what he would do if there were any bleeding or clotting issues, and his answer was right on the mark—insert a filter in my vena cava to prevent another embolism. With his answer, I knew he was very well prepared for a patient with my complex issues. He was present as two nurses gave me the transfusion, and I asked my Hubby to pray over me before I went in.

As with my other surgeries, I woke up in a cold room to the voice of my operating room nurse. All I could think of was that I made it. I’m alive! The doctor told us that my appendix thankfully hadn’t burst and was only inflamed.

They wheeled me to my room. No room mate. Hubby stayed with me all night.

I was released from the hospital late the next day, all bruised and sore in my belly. They sent me home with prescriptions for antibiotics, painkillers, and Lovenox shots that I had to inject myself (while bridging back to taking only Coumadin). I’m finally awake enough and have enough strength to spend some time in the living room with my laptop. 🙂

Emotionally and psychologically, though, I’ve been struggling because I just can’t believe I’m going through yet ANOTHER potentially life-threatening health crisis. Yes, I’m grateful that I was in good hands and that I got to the ER in time; but I just don’t know how much more of this I can take.

Hubby and Mom (who flew in to help take care of me) said I’ve done very well. But, I can’t sleep, and I keep thinking that something more will happen; like the last time I had the laparascopic surgery (to remove my fibroids). Mom reminded me that it was eight years ago to the day that I hemorrhaged from that surgery–February 4, 2005.

So, this illustrates more than ever that I need to find a good psychotherapist here in Reno. I think it’s important for me to get back into therapy so that I don’t regress. This has the potential for really setting me back. I just don’t understand why this stuff continues to happen to me….

But, closing my eyes, and thinking of how a therapist might counsel me, I can counter those moments of thinking – why me, again? AND, if I choose to, I can see that all the pain and fear keeps me in constant prayer and it gives me a profound appreciation for the little things. Our sufferings can be turned into blessings, if we just let them…. Whew, that’s not easy to swallow, but all I can do is try.

Love,

Olivia

Dear Diary,

Today I had my first rheumatology appointment, after waiting for nearly four months. I was so nervous! But, I’m happy to report that my new doctor was wonderful. Her name is Dr. T, and she’s a very compassionate, smart, and listening doctor.

She went over my records with me and interviewed me for quite a long time about all my symptoms — going as far back as my childhood and my pregnancies (my son and two miscarriages). She asked about past injuries, and I recalled the time that I tore my Sartorius muscle after a water slide ride with my son at Busch Gardens theme park in 2002. I was on crutches for over eight weeks from that injury.

I told her about my bone pain from the arthritis, the chest pain from the pulmonary embolism, the chronic hives, the hair loss, and on and on. Then she examined me, testing my joints, and she even looked at my scalp. She was amazed that I managed to cover up my thinning hair so well! 🙂

So, after she was finished with the interview and exam, she went over my blood work and told Hubby and I that I do indeed have Systemic Lupus Erythematosus or Lupus, for short. Given all the past history and the current symptoms, it looks like this Lupus has been plaguing me for YEARS!

She was surprised and a little bit annoyed that I had never been diagnosed before since my case is so obvious.

The next step is more blood work so that she can determine which medication will work best on me. I see her again in a couple of weeks.

I hope the meds will help. My allergist thinks that the meds will even enable me to eat the foods I’m allergic to. The allergy is just my body attacking itself in response to certain proteins. So, if the meds eliminate the immune response, I should be okay.

If that’s true, watch out pizza–here I come! Can you believe that’s all I’m thinking about? Ha! Well,  sometimes it’s not just the big things in life that a chronic disease deprives you of. It’s also the little things—the things that you used to enjoy that you just can’t do anymore. For me, I LOVE pizza, and for over two decades, I haven’t been able to eat it without a major autoimmune response, especially the angioedema on my upper lip. My son calls it a bubba, referencing the Bubba character in the movie, Forrest Gump. If I can get to the point of eating pizza again, I will feel that I’ve gotten just a little bit more of my old, healthier life back.

Who knows if that’ll happen. I can dream, though.

Love,

Olivia

Dear Diary:

I just got the call about yesterday’s blood test results. Two of the blood test results for autoimmune disease came back positive — one for general autoimmune disease (ANA) and the other for systemic lupus erythematosus (Anti-DNA DS).

It’s been such a long time coming.

While this is bad news, it’s also GREAT news to finally know that I’m not crazy and that all my health issues have probably been caused by the disease. So many blood test results that never revealed anything. For example, UCLA tested me for this three years ago, and my former internist tested me for this two years ago, but both times my blood test results were negative. I think that’s because the tests were slightly different.

I believe I was even tested in the 1990s after having my son, when all my strange symptoms truly began.

At my orthopedist appointment two weeks ago, they told me that many times tests for autoimmune diseases often come back with false-negatives at least 30 percent of the time. So, when I was tested before, it was definitely a false-negative result.

So, the next step is to see the rheumatologist for further testing.

Just so you know, autoimmune diseases range from lupus to rheumatoid arthritis to Sjögren’s syndrome (Venus Williams has this) and so many more.

I wanted to let you know as soon as I found out.

Love,

Olivia