This is part 2, it turned out to be so long so I broke it into two parts. If you haven’t read part 1, yet, you should click or tap over to I had tuberculosis.

I will say, the entire stay at the hospital, I was in total denial. I didn’t believe that I had tuberculosis. I framed everything as in if I have it, if they know what my illness was. It was always an if.

I remember when they first came into that hospital room and told me, I said, “I need to call my pulmonologist.” I did call him before I left my first hospital room and begged his front office to put him on the phone because I was freaking out. He got on the phone and told me, “Well, I’m the one who called them. We sent samples from the bronchoscopy and the preliminary tests came back showing tuberculosis. I had to alert the hospital.”

My husband wanted to know more details and just wanted to figure out what we could do and what our next steps would be. He even tried calling to talk to my doctor, he had left a message but after a couple of hours of not hearing back, he actually drove over to his office.

I love my doctor because he’s hilarious without trying to be and his very matter of fact manner. He kept telling Curtis to calm down and that everything was going to be okay.

We were both so scared. In one way, it was reassuring to hear this and on the other hand, we didn’t feel like everything was going to be ok.

Side note: I had a routine visit scheduled this past December with my pulmonologist and he said you look good. You have come a long way. Before I left, he was standing next to me and gave me a side hug.

I texted Curtis afterwards and said my doctor hugged me! Gosh, I don't know if they know how I appreciate him and his staff so much.

While in the hospital, I was treated by an infectious disease specialist. He was a doctor who specialized in infectious diseases and especially had experience with tuberculosis. He told us that he used to work for the state working on their TB protocol.

He had a great bedside manner and spent a bunch of time with us answering our questions. I’m really grateful to him because he explained how tuberculosis is treated and how the patient is treated.

He told me that I was going to have to deal with the health department, that they would actually come over to my house and watch me take my medication. If I refused to take my medication, that I would be arrested and admitted to a hospital, probably one in south Florida, where they would force me to take my medication.

He mentioned the names of the medications I would be taking and he told me that I would be taking them for at least six months. He told me I was lucky because in the past it was up to a year on those medications! I can’t even imagine that! Even looking back, I can’t imagine that.

He explained that it’s a disease that is pretty old and there are laws in the books that say the government can make you take the medication for it.

Side Note: When this doctor found out that I wrote about food and photographed food for a living, he told me I had to try this Thai place near his office. He would rave about this place. We went that summer when I started to feel a little bit better and we loved it. I just ate there again yesterday with friends!

Frustrating times in the hospital

During my stay at the hospital, a couple of situations occurred that were really frustrating.

One morning, I woke up and my fever was back in full force. I wasn’t hallucinating, but I was starting to feel really delirious, and it made me feel really scared that I wasn’t going to get any better, that I was getting worse.

I was shivering and shivering, but then also sweating and not feeling really great. I also wasn't able to think straight. I remember one of the nurses came in and said, “I’m going to be back in five minutes with your medication,” and I remember looking at the clock and it was 7 A.M.

I fell asleep again because I was so delirious, and I woke up again at 10 A.M., and there was my nurse with the medication. She gave me my Tylenol and within a half an hour, my fever broke and I was feeling so much better. That’s when I started feeling really angry because I should’ve had my medication three hours before. It was so frustrating and it made me think of people who are much sicker than I am in hospitals all over.

What I learned: You have to be firm but nice. Even if you have to ask for something over and over again, do it. Be persistent. Keep track of your medications yourself and when your last dose was and when your next dose is supposed to be. Be your own advocate and if you can’t be (because you’re sick and it’s hard to be your own during that time), you need someone who you love and trust to be pushy for you.

The first night in the isolation room, they brought me the medication to treat tuberculosis. No explanation of the medications or what they were. They said, here take this. It was four different medications and a vitamin.

They were:

Rifampin
Ethambutol
Isoniazid
Pyrazinamide
Pyridoxine

A couple hours after my first dose, the nurse came back to check on me. I had just gone to the bathroom and I was freaking out because the toilet bowl was orange and I probably shouted, “Something’s wrong! I think I’m bleeding.”

I mean it was dark, so I couldn’t tell that it was orange, it looked red or purple to me. The nurse asked me, “Are you on your period?” and I looked at the nurse thinking, “Okay, I’m a grown woman. I think I’d know if I was on my period.” It was just laughable that she would ask me that.

The next day, one of the respiratory therapists told me I could request the names of the medications and the information sheets on them. So I did and when they brought the sheets in, the respiratory therapist reviewed them with me.

It turned out that Rifampin actually turns your bodily fluids orange. That was a fun experience especially since I had to take it for six months. (That's sarcasm! LOL There needs to be an emoji for sarcasm…)

Every few hours, a nursing assistant checked my vitals and each day they drew blood to run tests and also listened to my chest. Some of the doctors and nurses could hear a crackling noise in my chest, some of them said they didn’t hear anything and that I sounded fine. LOL

I could hear a creepy creaking noise in my chest. Sometimes I would hold my breath to see if it would stop but it didn’t. I kid you not, it sounded like creaky stairs in my chest and someone was walking on those stairs making them creak.

I had friends visit me in the hospital. Everyone that entered the room had to wear a mask and gown. I felt grateful they wanted to go to all that hassle to visit me in the hospital. And I couldn’t help but get emotional every time someone visited me.

I was still in denial it was TB. I felt vulnerable and tired. My family wanted to visit but my closest family lives over an hour away. I didn’t want to burden them with having them come to visit.

My Mom was sick with a cold (I think) at the time and I didn’t think it was a good time for her to visit. And I felt guilty and worried that I might have exposed any of my family and friends that I had been around during the last few months.

At a certain point, I began to feel better and asked to be taken off of the pain medication because it was an opioid. So that’s when they switched me back to Tylenol for my fever.

My attending physician mentioned to me that once I didn’t have a fever for 36-48 hours straight, I could go home. On Saturday afternoon (day 3), I was feeling much better. I had asked them to unplug me from the IV machine and cover my arm so that I could take a shower (which they had done every time I needed to shower).

When I got out of the shower I had decided that I was going to put on pajama pants and a t-shirt instead of the hospital gown. I was feeling much better, and I sat there for a few hours and no one came back to plug me back into the IV machine.

I wanted to go home

At that point, for a couple of days now, I had been taking oral antibiotics, so the only thing that was coming through the IV was saline water. I was talking to the respiratory therapist and I said, “I don’t really think I need this IV anymore,” and she said to me, “Well, you can ask them to take it out.” I said, “I can?” and she said, “Yeah, you can refuse it.”

That’s when I decided to call the nurse. When she arrived, I asked her to remove my IV. She was insistent that I shouldn’t do this and said, “We advise against this, we don’t really want you to take it out, we think you should keep it in in case something else happens.”

I could tell my respiratory therapist wasn’t looking at me, she didn’t want me to shout out to the nurse that she had told me I could refuse the IV. No way was I going to do that.

You don’t do that. I don’t know how many times I have said this but you don’t sell out someone who is helping you. (Of course, as long as they aren’t harming someone else or doing something illegal.)

I told the nurse, “Well, I refuse this and I want you to remove the IV.” The nurse came over and pretty much yanked it out of my arm (it really hurt when she did it) and told me to put my hand over it. Then, she left.

We were sitting there for a little while and she looked down at my arm and said, “You’re still bleeding. She didn’t bandage your arm?” I said no, “she had told me to place my fingers on my arm and never came back to bandage my arm.”

That’s when my respiratory therapist started looking at a first aid box (or was it a supply box?) that was in my hospital room and there were no bandages or gauze. She then left the room, having to go through the whole procedure and again once she returned with a bandage for my arm.

One night during my stay, I couldn’t sleep because another patient down the hall wouldn’t stop yelling and screaming. When my nurse entered my room, I asked about the yelling. She told me they were ignoring him.

They won’t let me leave the hospital

At this point, I had started asking the nurses who came into my room if I could see a doctor to discharge me. The response, “Well, your doctor’s not here, your doctor’s off for the weekend.”

Being persistent, I kept calling the nurses’ station. At one point I said, “I’d like to speak to the head nurse,” and they responded with, “We’re trying to get your doctor to approve it.”

Then, at one point, the head nurse actually came into my room and said, “We can’t let you go. No one will discharge you, no one is here.” Basically, the answer I got was that they’re short-staffed on the weekends and they don’t really do discharges on the weekends.

They told me that the physician treating me wanted to confirm with the infectious disease specialist my prescriptions before discharging me.

It just boggled my mind, I was sitting there in my pajama pants, no IV in my arm, and watching T.V., and I felt like I was in a really overpriced hotel room at this point. I just was really frustrated and wanted to leave. I felt so stir crazy because I couldn’t leave that room.

Side note: I watched the Cinderella (live action) movie on tv in my hospital room, it was my first time watching that movie. I bawled when Cinderella’s mom told her to have courage and be kind. It sounds so cheesy but I felt like her character was speaking directly to me.

Curtis would come visit me and stay with me for the whole day but like I mentioned earlier he had to go home at night and take care of the pets. He would spend a lot of time looking out the window and say, “You have a really nice view.” I responded by saying, “I don’t care.”

To this day, I can’t even tell you what it looked like out there because I didn’t even want to look out the window. I wasn’t allowed to leave the room so I was frustrated.

The next morning (which was Sunday), I saw my doctor and he said, “I’m really sorry you couldn’t leave yesterday, we had to get your medications straight.” They gave me prescriptions for the five medications and I was able to go home.

That afternoon, on the way home, a dear friend of mine texted me asking how I was and if I had received the flowers she and a couple of other friends had sent me. She had paid for them to be delivered to my hospital room.

I told her that, “No, I didn’t get any flowers.” She responded by saying that she would reach out to the florist the next day (Monday).

She spoke to the florist and the florist even called me. The flowers were delivered by her husband on Saturday afternoon. They left it at the nurses’ station but I never received them. She sent him back to the hospital on Monday. The nurse who signed for them told him I don’t know what happened to them, I think they were delivered to the patient.

He then went outside and called his wife and she told him to march back in there and tell her she would need to pay for the flowers since they were never delivered to the patient. He suggested to his wife to put together a new bouquet so he could deliver it to me at home. She said no way, you need to go back in there.

He went back inside and told the nurse what his wife told him to say. They scurried around looking for the flowers and turns out it was in a linen closet. We all wondered how they got there. He delivered them to my house and I was so grateful.

Kindness and Thoughtfulness Matters

At first, I thought it best to not make a big stink about this…but then when you think about it, my dear friends had taken the time to send me beautiful flowers because they were thinking about me. They wanted me to know that I was loved and that they cared.

When someone has a serious illness, these tokens of love and thoughtfulness mean so much. They really do. Especially at a really vulnerable time and you’re not feeling your best.

It’s hard to not think that the flowers were purposefully not delivered to my room because I was being persistent about getting discharged.

While I was in the hospital, I did google tuberculosis on my phone. Most of the sites that popped up were about TB symptoms and treatment. I only found a couple of firsthand accounts. They were aid workers who got sick in faraway countries and came home to the U.S. to be treated. One of them had to be quarantined for months and she became depressed. The other case was so serious that she had to have parts of her lungs removed.

There were times in the hospital where I was really scared. I had moments where I wondered if I was going to die. So when my friends thought of me and ordered flowers and whoever at the hospital decided they weren’t going to take the time to deliver them to me, it just pissed me off.

But more than that, it upset me. If it could happen to me, it could happen to others.

Curtis took me home from the hospital when I was discharged and then went to the pharmacy to fill the prescriptions. The pharmacy only had 4 of the 5 medications. I later found out that a month (or two?) supply of these meds costs upwards of $2000.

We were lucky to have good insurance at the time and paid a total of $200 in copays for the meds they did have. I took the medications that night and Curtis went to a different location to pick up the fifth one.

The health department calls me

On Monday morning I received a phone call from a gentleman who works for my county’s health department. He told me that he had in front of him results from the state’s TB lab. He told me that I, in fact, had TB and that the hospital should have called the health department.

And that he would have seen me in the hospital. The entire time, he was just shocked that the hospital didn’t call him. Then, he told me that the health department would be handling the medications, they would be bringing the medications to me, and, just like the infectious disease specialist told me in the hospital, that they would deliver my medications and watch me take them.

He told me to throw away the $2,000 worth of medicine we had just bought the day before. He told me that I couldn’t use it as they are supposed to dispense the meds directly. I was so grateful that we had insurance and that we hadn’t just shelled out $2,000 for medicine you can't return.

But $200 is still $200 and we wouldn’t have spent the money and wasted these medications if the hospital had called the health department like they were supposed to. I wouldn’t have received those prescriptions if they had called. And maybe I could have left the hospital a day earlier.

One of the things I learned on the call was I was to be quarantined for two weeks. I needed to stay home and stay away from people with compromised immune systems, children and babies. When I was in the hospital, they asked me over and over again if I had children. Now I knew why.

He told me I could take walks but that I should generally stay home. They understood that I would have follow-up appointments with doctors so during the quarantine period, I would need to wear a mask when I went to a doctor’s office. But the main thing was I should avoid areas or rooms that are not well-ventilated.

I remember framing everything again with an if. If I had tuberculosis, if the final tests come back as TB, were we sure that I had tuberculosis? I was told in the hospital that I would take eight weeks for a full culture to come back with a definitive result of positive for active tuberculosis.

That made me think, there’s a chance I don’t have it! But looking back, I know that didn’t make sense, my hoping it wasn’t TB. Which meant I was hoping they were wrong and didn’t know why I was sick. Because active tuberculosis is highly contagious, they don’t wait the 8 weeks to find out. If initial tests come back as a possible positive, they make you take all of the medications to treat you for TB.

I asked what percentage he was certain that I had tuberculosis. He told me 97%, that he was 97% sure that I had TB.

I had to do a series of tests. I had to give the health department regular sputum samples. I’m sorry if this sounds gross. I had to inhale deeply and try to cough from the bottom of my lungs and then spit into a cup.

Once I had a couple of consecutive negative tests, the quarantine would be lifted, which meant that I was no longer contagious.

Why health departments are tasked to watch TB patients to take their medicine

The reason health departments are on TB patients to take their medicine, they shared with me, because once they are not contagious and when they start to feel better, in the past, they would stop taking their medications. Which is bad news since you’re taking antibiotics. This would create a resistance to antibiotics.

During the time I was quarantined, I talked to my therapist over the phone and did our sessions that way. I’m grateful to her and having the ability to talk to a third party about what I was going through. It helped me process it which looking back was a saving grace.

Every day, except the weekends, they came over and gave me my medication. (On Fridays, they would give me enough medication for the weekends for me to take on my own.)

At first, I was taking 10 pills a day. But at the two week mark, I was allowed to opt into taking 21 pills twice a week instead of the 10 pills a day.

The nurses at the health department were always nice. When they came over, we would sit on my couch and chat while I was taking the medicine. They would ask me how my day was going, answer any of my questions and chat with me like they were my friends. But I know their sole purpose in coming over was to deliver my medications and watch me take them.

The medicine made me so sick. Actually, I get emotional thinking about that time because I could barely eat and I could barely do anything. It just made me feel overall ughhh. I spent a lot of time on my couch. When I could, I would watch Netflix. I rewatched every West Wing season (the best TV ever), I watched the Newsroom for the first time and I even watched all of the episodes of the OC.

I went to see both my primary care doctor and the infectious disease specialist as a follow up to the hospital stay. One of my doctors told me that basically, I was going through a chemotherapy treatment. It was four very strong antibiotics and a vitamin (because one of the antibiotics strips your body of vitamin B6).

I remember my primary physician telling me that I needed to let my body heal and I needed to be gentle with myself. I was getting so frustrated that I couldn’t work and I was getting frustrated with my body. Through it all, she was very nice and I remember that day I was bawling in her office, she gave me a hug.

I even had a nice chat with her after the whole chest x-ray fiasco before I ended up in the hospital. Something happened with my chart and it never made it to her desk to call me with the radiology report. She took full responsibility for it and even apologized.

She even gave me her cell phone number for whenever I needed it. I remember texting her the night I was in the ER…asking her what I should do. She did respond and told me that I should let the hospital admit me and figure out what was going on.

Back to the meds, they made me really sick. Since I was on twice weekly, the medications made me feel sick for a couple of days. When I would start to feel a little bit better, it would be time to take the next dose.

I opted for Mondays and Thursdays and pushed them to come as late as possible in the afternoons. Having them come in the afternoons left me with two mornings a week where I would feel a little bit better and I would try to get some work done.

One of the other milestones I was waiting for was to see if the strain of mycobacterium tuberculosis that I had was antibiotic resistant or not. They told me once that test came back as negative, I would be able to remove one of the medications.

In total, I was unable to work for four months that year. Early on after I came home from the hospital, I had an impending deadline for a client. This client was understanding and kept telling me that it was ok and I could take my time. I was really late turning in my work but they were accommodating. They have no idea how much it meant to me that they were flexible and understood that I was really, really sick.

One of the regular things I had to do besides taking the medications was to get regular bloodwork done. One of the medications can affect your liver and they wanted to track that.

I had to get an HIV test

When I first talked to the health department, they told me they needed to test me for HIV. If I was HIV+ then the treatment for TB would be different. I assumed I wasn't HIV+ but the anticipation waiting for the test results was not fun.

A couple of weeks went by and they didn’t mention the HIV test results. I was in close contact with the health department, talking to them several times a week. So I finally asked about it and they told me that the lab complained they couldn’t run the test because there wasn’t enough blood in the vial.

It was frustrating dealing with the health department

So I returned and a different person from the health department took my blood sample. She asked me which arm she should use. I told her my left arm. One of the things I do when I have to take a blood test is I don’t look at the needle, I just make sure they’re wearing gloves and then I look away.

At one point, she mentioned that there was no blood coming out. And the vein had collapsed. I looked down and she had actually stuck the needle into the same vein as where my IV was from the hospital was placed, and that vein had not healed yet. That arm was looking really gross. I told her this and she said let’s try your other arm.

She had to stick me three times to actually draw blood. It was excruciating. I never had a problem with blood draws until that year probably because I had to have blood drawn so many times. It’s hard for me to get blood drawn today. I wiggle around and I try not to get anxious but it’s hard not to!

So of course, after that, I talked to my primary care doctor and she wrote me a standing order for all of the blood work that the health department needed and some extra tests. It was great, because then I can pick where to go to get my blood work done. I went to the place I usually go to, the lab I mentioned earlier. It doesn’t hurt when they do the blood draws.

Same thing with my x-rays and my CT scan when I had to get another one done. My pulmonologist did the order. I used my health insurance to help pay for these tests. I could have done it through the health department and it would have been covered by my county or my state but doing it through my insurance I could pick where I wanted to go and not have to deal with some of the ridiculousness.

Side note: During that time, I found out that I’m vitamin D deficient. Like dangerously deficient. I take a prescription supplement every other week now and it helps my energy level tremendously and I don’t get weird muscle cramps anymore!

Over time, I realized that I needed to stop questioning whether I had TB or not. Even if I didn’t fully believe in this diagnosis, I was starting to feel better. I was coughing less and less.

Not that I was trying to deceive them but I knew I needed them to know that I would be in compliance. I was taking my medicine and actually in the end, never missed a dose the entire six months I was being treated.

I was given another patient’s medications

I think it was May, a Monday or a Thursday, one of the nurses arrived from the health department to give me my medicine. After a month or two of getting meds from them in an orange bottle with my name handwritten on it, they started bringing my medication over in a little plastic bag that had my name, birth date and medications and dosing printed on it.

You tear it open and just take the medication. I know you have seen ads for this service on TV and on social media. I have!

I have a placemat on my coffee table and I always sat in the same spot on the couch when they came over. They always sat across from me and would have a casual conversation which was always disconcerting because I know they were watching me to make sure I took my medicine.

I always tore open the packet and would let the pills drop onto the placemat. Some of the pills were pretty big so I would take them one at a time. When I was taking 21 pills, it felt like it was going to take forever to finish them all. (Over time, when I would hit certain milestones or time periods and they would remove a medication or lessen the number of pills. Towards the end, I was taking 8 pills twice a week.)

I would always hold the little plastic packet with my name on it and play with it with my fingers, moving it up and down and twirling it. That was just a nervous tick I had.

At one point, it didn’t seem to register fast enough in my brain for me to spit it out. I had realized this wasn’t my pill packet. It had someone else’s name on it. And then it registered and I could blurt out, “These aren’t my pills!”

She said, “What?” I replied saying my name isn’t on there, there’s someone else’s name on this pill packet.

She had no idea how it happened and was flummoxed. She probably shouldn’t have told me this but she mentioned that this other person was double my size and had more pills in his packets than I do.

She looked at the pills that were left on the table and calculated in her head the ones I had already taken. And she said with confidence (although I don’t know if I believed her) that I had only taken what was prescribed to me and what was left on the table were the pills I didn’t need or shouldn’t take.

I was pretty gobsmacked that I was given someone else’s medications. My level of frustration with dealing with the health department only grew. Again, they were very nice people but I was still frustrated.

In June, I kept asking them for the final culture results. I knew the 8-week mark was coming up. Every time I saw them or talked to them on the phone, I asked them for the results. It was probably annoying them because every chance I got, I asked them if they received the results yet.

I’m talking about that original sample that was taken out of my lungs by my pulmonologist. The state lab had cultured it and I was waiting for that final result.

Finally, I got the results, they handed me the paper that said Julie has TB. Not exactly that way but you know what I mean. This was weeks after the 8-week mark, by the way. The date on results was dated three weeks earlier. To say that I was mad was an understatement. But what could I do?

Towards the end of June, it was nearing the halfway point for my six months of treatment for TB. So I started asking, what is the date of my last dose? I wanted to know so I could put it in my google calendar! I love looking forward to a certain date. I get to count down, I guess you could say.

They kept giving me the runaround. They kept telling me it depends on different variables and what if I missed a dose? I told them, I haven’t missed a dose yet and I don’t plan on it. All of the nurses kept avoiding the question when I asked about the date of my last dose.

So finally, one afternoon, the nurse who had accidentally given me the wrong meds called to ask about what time she could come over with my medication. I told her that I have been asking for my end date. She started telling me the same thing that everyone else said.

I finally said, “You know, honestly, I’m not a child. I totally get that things could change, but I just kind of want the date and I’m really frustrated because I had asked for that final culture for weeks, and then I finally get it, and the date on the report was three weeks earlier.

The other thing is, the other day you came over with someone else’s medication, I never told your boss about that. So, I just really want a date. Just give me an end date, I know it might change.”

She responded by saying, “Okay, let me see what I can do.” She gets off the phone and her boss calls me back ten minutes later. He says, “Okay, here’s the date, it might change,” and I said, “I know, I just want to put it down in my calendar.” When I counted how many doses, it wasn’t the exact date that I thought, but it felt good to me to have this final date. I thought to myself, okay, this is when I’m going to start feeling better.

June was a big month, I started traveling again. I went to Boston for a blogger retreat and it was so fun to be among friends and “co-workers” again. I started to feel like I was coming back to the land of the living.

Because I hadn’t missed a dose meaning I was compliant, the health department was able to give me a cell phone that had wireless service. The only thing you could do on the phone was take a video of yourself taking the medicine and upload it to a server that my health department had access to.

I had to take a selfie video showing them the pill packet with my name on it and showing them each pill in the camera as I took it. This was great because I didn’t have to meet them twice a week in my living room anymore. And I could take the medication as late as I could which meant I could actually eat dinner!

Side note: another reason why I love technology!

For a long while, I don’t remember exactly how long, I slept in the guest bedroom. I didn’t want to get Curtis sick. I felt a huge amount of guilt because the initial blood test showed Curtis had been exposed to TB. They ordered a chest x-ray and didn’t see any TB infection in his lungs via the x-ray so they gave him the all clear.

I was told that consistent and close contact with a person with active tuberculosis (who is contagious) is how someone else could “catch it”. My mom and a couple of siblings who live closest to me were tested and they all came back negative. But it wasn’t a surprise to anyone when Curtis tested positive for TB exposure.

He’s my spouse and we share a bed together so while I was contagious, he had close and consistent contact with me. Again, I’m so grateful that he never got sick.

I’m so glad he didn’t have to be quarantined and miss work for 2+ weeks. But because he was exposed, he had to take Rifampin for 4 months. I felt terrible because that’s the medication that turns stuff orange. I know. Ugh

Aside from the medications wearing me out, a lot of the time I felt too sick to eat. I had a nauseous feeling in the pit of my stomach for most the time I was on the medications. And one of the medications caused joint pain. The joint pain thankfully stopped a few months after I finished the medications.

I finished my tuberculosis treatment in October 2016. I had another chest x-ray ordered by my pulmonologist that December and it showed my lungs were healing.

I was told by the health department that I would probably have scarring in my lungs and if someone was trained to see it, they would be able to see the scarring in my lungs (and know it was from TB) via x-ray.

I was diagnosed with an immune deficiency

In December 2016, my allergist (who is also an immunologist) diagnosed me with Mannose-binding lectin deficiency. Finally, I had an answer. All along, everyone said I didn’t fit the profile of someone who could have active tuberculosis. That it didn’t make sense. That something in my history had to account for why I was not able to fight off the dormant TB any longer in 2016.

I kept asking my doctors for answers on what my something was. What was that something? My doctor ran a battery of blood tests and discovered the deficiency. He told me that a lot of doctors don’t know about this deficiency so they wouldn’t be likely to run this test.

It just means that I have a deficiency of an immune system protein. I’m more susceptible to upper respiratory tract infections. I’m more susceptible to pneumonia and meningitis. Likely caused by a genetic mutation, I was told there’s nothing they can do about it.

There was something I could do though, I was advised to get both pneumonia vaccines as well as the one for meningitis. Over the last couple of years, I have gotten all three of them.

It took over two years for my body to heal after I completed the medications but even after being given the all clear from the health department, I had what seemed like an unshakable anxiety about getting sick. About being around sick people.

I could feel the anxiety materialize when I heard someone near me have a coughing fit. I was constantly worried that I would get sick.

Because when I get bronchitis, it always takes me longer to get better than anyone else around me. And I got it pretty much every year. So the immune deficiency diagnosis made so much sense. As a child, I was sick a lot.

Every few months, I would feel more of my energy level coming back. I would think I’m all better now. I’m ready for whatever comes next and then a few months later, I would feel even more energized.

I realized that my body had to heal and I had to give it the time and space to do so. But during that time, I wanted to rush it. I was tired of being sick and tired of being tired.

Where I’m at today

If you have stuck with me this long, thank you…I know these posts are so longgggg.

Today, I try really hard to listen to my body. Sometimes, I’m not very good at listening to it but I am better about it than I was 3+ years ago. I really try hard to rest and drink a lot of water. I don’t share food or drinks with anyone.

I try to do yoga regularly and I try to keep my stress level down.

A couple of the most important lessons I learned was that you quickly find out who your real friends are and what truly matters.

What matters most to me are my friends who care so deeply, friends who want what’s best for me and who support me. What matters to me is that I live authentically and only share with you the things that I love but at the same time, share with you what's going on and being real.

It’s interesting how there were little things that used to bother me before my illness and I could give a crap about those things now. And there were things that I didn’t prioritize but I prioritize them now.

From the friends who had flowers delivered to the hospital and the ones who showed up in my hospital room and wore a mask and sat and chatted with me. Even though, I didn’t know what to say and couldn’t stop crying because I was so scared.

And the friends who sent us a gift card for groceries. And to the friends who sent us food, even though I couldn’t enjoy it in the moment, it mattered and I appreciate them for it.

I remember telling one of my sisters years ago, we have been through so much. We can get through this. I tried to channel that feeling and those words even in my darkest times during my illness. And there were dark times.

For a long time, I really wanted things to go back to the way they were. But I know now that it’s not possible.

Now I try to take time and pay attention to what I need first. Which means staying hydrated and getting enough sleep. And that means saying no more often than I did in the past. Saying no more means I will have energy for the things that are most important to me.

In November 2016, I talked to my doctor about this constant neck and back pain I was having. After an MRI showed I had a herniated disc in my neck and several bulging discs, I realized I have to work even harder on lessening my stress even more. Even not getting enough sleep, causes muscle spasms in my neck and back.

Everything has changed and I can’t go back. I learned so much from this experience, about myself and about others. And today, I can honestly say I wouldn’t change a thing.

Everything has changed and yet, I am more me than I’ve ever been. –Iain Thomas

The last lesson that I learned and wanted to share with you is to always ask for copies of test results, reports and imaging. Today, I always ask for ultrasounds, x-rays, scans on a disk so I can keep and if needed, I can take to another doctor. Sometimes, doctors and nurses are taken aback because they are not used to patients asking for copies of everything, even a negative test result. But I tell them, it’s a habit I have developed after having active tuberculosis.

The post I was in denial that I had Tuberculosis appeared first on The Little Kitchen.

This is part 1, it turned out to be so long so I broke it into two parts. Don’t worry, I’m publishing them on the same day. If you’re done here, you can skip over to Part 2.

Yesterday was the day, I can’t believe that it is now exactly three years since I was released from the hospital. When I sit down to think about it, it all seems so crazy to me. It all seems so surreal and I feel the need to share with you my experience at this time.

In April 2016, on a Wednesday, I ended up in the hospital. I was coughing for months. A couple of doctors assumed it was acid reflux that was causing my cough. I was even taking medication for the acid reflux and at one point, I was even given muscle relaxers to even try to help calm the cough. But, it wasn’t working.

I can’t even tell you how many times I googled “severe cough” and other related search terms. I was pretty miserable. Not only was I coughing, but the coughing was also causing severe pain in my chest. I couldn’t have a conversation with anyone without coughing every other second.

So, long story short, I didn’t have acid reflux.

I had active tuberculosis.

When I meet a new doctor or nurse and tell them I previously had tuberculosis. They assume that I’m talking about the dormant form or I was exposed to tuberculosis. Actually, a lot of people around the world and in the U.S. have been exposed to it. So it’s not uncommon.

If you have been exposed to tuberculosis, it doesn’t mean you’re contagious. You’re likely not sick. You just have the bacteria in your body. You might never get sick because your body is able to fight off the infection and it’s actually dormant and not active. That was me for a while and for who knows how long and then it turned into full blown: active tuberculosis. That’s what I had and I was contagious.

The question I get all the time when I tell someone I had tuberculosis

“Oh, well didn’t you get vaccinated for that?” Actually, in the U.S. we don’t usually get a vaccine for tuberculosis. There is one that’s given to babies in other countries but It doesn’t prevent you from getting TB.

TB is actually a bacteria. And tuberculosis is treated with several different antibiotics. The scary thing is there are some antibiotic resistant strains of TB.

If you're about my age, do you guys remember this when you were a kid? In the late 80’s and early 90’s, I remember getting the little stick skin test for tuberculosis exposure.

They would give us the TB skin test, then take a pen and draw a circle around it, and then after 48 hours or however long, they would check it. If there was a red mark or a rash then they would send you to the doctor and get a chest x-ray. Those skin tests, when I was a little girl, always came back negative.

So, going back to ending up in the hospital and all of the coughing.

Actually, let’s rewind a little further, a few weeks. We were shopping at a big box store and I was coughing up a storm. I could feel the glares from other customers every time I coughed.

Side Note: Let me just say, I feel terrible about possibly exposing people to TB. The doctors kept telling me to not worry about it, that I needed to focus on getting better. They reassured me by telling me that I didn’t do it on purpose and they were glad they caught my TB sooner rather than later.

Remember all of the coughing was so painful. I was doubled over in pain. I was even crying at one point while were in the store and Curtis looked at me with worry. I was so self-conscious about this cough, I actually thought he was looking at me and thinking, “Oh gosh, she’s being so dramatic.”

But after a few minutes, he begged me, several times, to go to the urgent care clinic.

The urgent care clinic sends me home with a Z-Pak

I agree to go and I remember telling the nurse and the doctor (or it might have been a nurse practitioner) that I was in so much pain from all of the coughing. I had never experienced this type of pain before.

They told me that they could hear the wheezing in my lungs. I actually have mild asthma, so it wasn’t a surprise that there was something going on in my lungs, we just didn’t know what.

I was coughing off and on for months; I thought I just had really bad allergies. I was thinking that the cough was a result of the allergies because I would get a subtle cough when my allergies got pretty bad. My preventative asthma medication usually helped with this but for months it hadn't been working.

They did order a chest x-ray at the clinic. They returned to the room and told me that they didn’t see any pneumonia in my lungs via the x-ray.

They gave me a breathing treatment and then gave me a Z-Pak (antibiotics) and then sent me on my way.

I wanted to say that I felt better. But to be honest, I was still coughing every other second. The Z-Pak did nothing. The breathing treatment probably helped a teeny bit.

A trip to the allergy doctor

I was at my allergy doctor’s office a few weeks after my visit to urgent care. We had scheduled a date to start these injections called Xolair. It was supposed to help me with my allergies and hopefully with the cough but would require me to sit in the office for three hours after the injection (if I remember correctly) and also require me to carry an EpiPen indefinitely.

A couple weeks before this, I had seen my GI doctor. I don’t remember if he was totally convinced the cough was caused by acid reflux but he recommended an upper endoscopy with a 48-hour Bravo esophageal pH test.

He described it as something being clipped to my esophagus and I would have a beeper-like gadget attached to my belt. It would send pH values to the monitor every so often.

He said this procedure had to be done at the hospital. His scheduler worked with me on a date for the procedure. The week the procedure was scheduled, someone from the hospital called me about the financial arrangements.

They said the procedure would cost me around $4000 (my memory is foggy and I don’t remember the exact amount) and that they would only ask for me $2000 beforehand. I wrote down the amount and at that time, was thinking where am I going to get $2000 right now?

They called back a day later and said I could pay half that amount if needed (which would be a quarter of what we would owe in total). I talked it over with Curtis and because we weren’t sold on ‘your terrible cough is being caused by acid reflux’, I decided to cancel the procedure.

Back to the allergy doctor. He heard me coughing and I think he felt like it sounded worse. He decided he didn’t want to do the Xolair injections that day. He wanted to hold off on the injections.

I mentioned to him that the urgent care clinic I went to a few weeks before had ordered a chest x-ray. I remember him asking one of his nurses to call and get the radiology report for the x-ray.

The last thing I remember about that appointment was while I was leaving, the nurse came over to me and she said, “Hey, we got a copy of the chest x-ray.”

“…And it says here that you have pneumonia.” And I thought, “What? I’m so confused.”

It was one of those times where you hear something and you don’t believe it. Or you don’t want to hear it. It didn’t make sense to me. Why did the doctor at the urgent care clinic tell me I didn’t have pneumonia?

And here was a report that said clear as day that I have pneumonia. I just looked at the nurse and said, “But she told me I didn’t have it. I’m so confused.” Then she responded saying, “I don’t know, it says here you do.”

I was already on my way out so I just left the office. I had paid my copay and I was done. So I just kind of left it at that.

I don’t know why. It’s one of those things where you look back and you go, “Why did I react that way? Why did I say that?” It doesn’t make any sense, because everyday Julie would say, “Okay, what’s going on here? Let’s fix this. Why does it say this?” But, I just kind of ignored it.

My sleep specialist/pulmonologist orders a CT scan

I have sleep apnea and I see a sleep specialist. He also has a specialty in pulmonology. I later learn that there are a lot of combination pulmonologist/sleep specialist doctors out there.

I see him occasionally for follow-ups and every year he orders a pulmonary function test. I actually asked my doctor if we could skip it in 2015 because our new insurance had kicked in and we had a higher deductible than we had ever had.

I had an appointment scheduled with my sleep specialist for months, it just happened to be a week after seeing my allergist. When I went in to see him, he heard the cough and I think he said something like, “Oh, that doesn’t really sound good.”

I told him about my other doctors’ theories that it was acid reflux causing the terrible coughing fits. He said, “Well, it’s not outside of the realm of possibility. Acid reflux can cause really bad coughing.”

I did mention to him that I did have a chest x-ray taken a few weeks before. Since, he’s in the same group as my allergy doctor, he just pulled up the report on the computer. He said, “Oh, it says here you have pneumonia,” and I said, You know, they told me that last week at the allergy doctor’s office and I really didn’t understand.”

He had his laptop open on a desk in the exam room. I was sitting right next to him and I could look at the screen and there it was written in really big letters, Dr _____ (I’m leaving my primary care doctor’s name out of this) to call patient, or something to that effect.

The urgent care clinic is in the same practice as my primary care provider. That’s why I like going there. Because both offices have access to the same medical chart.

My pulmonologist asked me, “Did your primary care doctor call you?” and I said, “No,” and he asked me again, and I said, “No, she didn’t.”

I nervously asked, “How could this have happened? What happened? Why did they tell me I didn’t have pneumonia?” Then, he said to me, and I remember these words exactly, “Well, someone not so smart read the x-ray and didn’t think anything of it, and then a couple of days later, an actual radiologist read the x-ray, and that’s what happened. But, they didn’t call you.”

At this point, I had been doing some research on my own, consulting Doctor Google, I know every doctor says they don’t want you to do any reading online before you come in for a doctor visit.

My biggest fear was that I had lung cancer. I was telling friends, “I’m coughing so much that I can feel my lungs and it’s so painful, and I feel like I shouldn’t be able to feel my lungs.”

It especially hurt on my right side, and the muscle relaxers and other medications they were giving me…none of it was helping. So, I was actually going to ask my doctor to order a CT scan. But then he asked me, “Have you ever had a CT scan before?” and I said, “No,” and he goes on to say, “I’m going to send you for one, if you can get it done today that would be great.”

I didn’t end up doing the CT scan on the same day because I had to wait to get the insurance authorization. I saw him on a Wednesday and the authorization came later in the week and I had to wait until Monday afternoon for the CT scan appointment.

The imaging place I usually go to also has a lab. I love going there because they are in the same group as my pulmonologist and my allergy doctor. They usually get results back for some tests the same day. And they are really, really nice there.

A few hours after I got home from the CT scan, I got a call from the pulmonologist’s office. They said they had the results back and the doctor wants to see you tomorrow morning. First thing. Can you make it?

My doctor said it looked like I had aspiration pneumonia

So, I went in to see the doctor, I was bracing for impact. I was so scared of what he was going to say. He told me that the CT scan is showing a lot more than the x-ray does. It was showing a lot of pneumonia (which just means infection of the lungs), all over my lungs.

The infection was showing up especially in my lower left lobe. He commented that it was really odd because it had this little area where it looked like my lungs were trying to wall off the infection. He had said there was a perfect line of demarcation between the infection and my where it was healthy or showed no infection.

He said this made it seem like it was aspiration pneumonia; where you inhale something that you ate and it gets stuck and causes an infection. But, he said that I was too young to have aspiration pneumonia and it just looked really odd and concerning to him. One of the things he said he wanted to do was order some blood work.

One of the things he mentioned the week before when he mentioned the CT scan was, and maybe we’ll do a bronchoscopy too. But, that was kind of invasive and that would be a big move, and he didn’t think we were going to have to do that after this CT scan.

That day when he told me the CT scan results, at one point, I asked him about a bronchoscopy. I asked, “Do you think we’re going to have to do this?” and he said, “Oh, no, I think that’s going to be too much.”

He sent me off to get the blood work done, he mentioned that he wanted me to get it done that day.

The next morning, the doctor’s office called me. One of his nurses said, “the doctor would like to speak to you, can you hold?” I actually don’t remember the last time I talked to a doctor on the phone.

My doctor orders the bronchoscopy

He said that some blood work came back positive for an infection and that he was concerned and that he was going to order the bronchoscopy. It has to be done at the hospital but we’ll get it scheduled. I got the feeling from him that he wanted to do it that week.

But we had to wait again for an insurance authorization and I had a work trip planned. I had been planning it for months. He reassured me that it was fine to go on the trip.

He kept asking me how I was doing. How are you feeling? Do you feel ok? I told him I felt fine except for the dumb cough. He asked again how was I feeling and if I had a fever. I didn’t have a fever.

That’s what’s so strange about all of this. I didn’t have a fever and I wasn’t wasting away or losing weight, which is the typical symptoms of someone with TB.

So, I went on the trip and it was really hard. Between coughing and wanting to do all the things, it was tough. I couldn’t walk that far without getting winded. I decided to climb all 219 stairs up a lighthouse though. Thinking back on it now, I can’t believe I did that while being sick.

Curtis was actually really worried the entire time. At each stair landing, he would look at me and say, “Do you want to go back down?” and but I kept insisting, “No, I’m going to do this.” Because I wanted to go all the way up.

I had the bronchoscopy procedure at the hospital

The following week, Tuesday morning, I arrive at the hospital bright and early at 6 A.M. for the bronchoscopy procedure. (It was so funny because it took me a while to even be able to pronounce that word.)

Basically, the bronchoscopy is a scope of your lungs. They stick a camera that has a light on it through your nose or mouth and it goes all the way down into your lungs. For my procedure, they went through my nose.

The anesthesiologist met me in the prep area where I had changed into a hospital gown. He told me that they usually do it one of two ways. One way where I’m not completely anesthetized and they would spray lidocaine down my throat, etc. as they were bringing the camera down into my lungs. The other way, I would be completely under.

Unfortunately, the first way he said would make me cough for hours but then it would go away. He told me that they were going to do the procedure the first way. I couldn’t imagine my cough being any worse. Later, I was wheeled into the operating room where I heard the anesthesiologist speaking to my pulmonologist. Then, suddenly, they put a mask over my face and then I was completely out.

After the procedure the doctor told my husband, Curtis, that they had found a blocked bronchial channel and that they used saline spray and just kept spraying it, trying to loosen it up. They were able to remove it along with a biopsy sample. That was something we had discussed to rule out cancer.

He told Curtis that I should feel better and I should be able to breathe a little better because they had removed that blockage.

I remember waking up in the recovery room and being told I had to wait a little bit. The next step was another chest x-ray to make sure my lungs were not punctured and to make double sure that neither of them had collapsed.

I saw the anesthesiologist again and he apologized, he told me that after he got into the operating room, he found out that we were doing it the second way. I was just grateful that we didn’t add a lot more coughing to what I was already going through.

I did think that my coughing was a little bit better, maybe a little less frequent, but I was still coughing. The next morning, though, I woke up and I felt like I gotten hit by a bus, I really did. It was the worst feeling. I really didn’t want to get out of bed. I was so tired and I just didn’t feel well.

I was in so much pain. I felt like my whole body was throbbing. My muscles were aching. I felt like my muscles and joints were on fire.

The only reason that I got out of bed was our dog at the time, Charley (he has since passed on December 2018), was 12 years old and he had a physical therapy appointment. I knew I needed to take him for his appointment.

I remember telling the vet tech, I feel really sore. I thought maybe they had hurt me when they moved me from the stretcher to the operating room bed. I asked her if I could possibly be sore from that. She has a relative who works in a hospital and immediately responded by saying, “I don’t think so.”

Thinking back to my theory, I know it makes no sense but I couldn’t figure out why I was in so much pain. And when you’re sick, you don’t really make sense. Have you experienced that before?

After Charley’s therapy appointment, I think I went home and just laid on the couch. I couldn’t shake the fever and it became even more elevated as the day wore on. When I got up, I was hunched over from the pain and I shuffled instead of walked.

Curtis came home from work and I remember telling him over and over, something isn’t right. I don’t feel well. I’m just very indecisive. I don’t know what to do, I don’t know what the next step should be.

He just says to me, and this is why I love him because he just says it, “What do you want to do? Do you want to just complain about this or do you want to go to the emergency room?” and I thought about it for a little while and said, “I think we should go to the emergency room.”

I ended up in the emergency room

I convinced Curtis that we should go back to the same hospital where I had the bronchoscopy procedure the day before. My logic was that they would have my health records from the day before. We waited a bit and then saw the triage nurse.

She took me into her little office that was connected to the waiting room area and asked me why I was there. I answered, “Well, I don’t feel really good, and I have this fever,” and she asked, “You know you can take Tylenol?” and I said, “Well, I was here yesterday and they told me I have pneumonia. I actually had a bronchoscopy yesterday. I had the procedure yesterday and I just don’t feel really good. I’m in a lot of pain.”

When she told me that I could take baby Tylenol to get rid of a fever, I looked at her and I said, “Are you sending me home?” I guess like I mentioned before, when you’re feeling crappy, you don’t really make sense. And it wasn’t like I could completely explain everything. I was just telling her, “I’m in a lot of pain, I don’t understand, I don’t feel good, and this is why I’m here.” I did mention pneumonia a couple of times too.

She told me to go back to the waiting room and wait for my name to be called. I noticed that she put my chart on top of the pile of charts outside her small office.

I remember sitting in my chair in the waiting room not being able to sit still. I was in a lot of pain at this point.

Also, I kept having to go to the bathroom. Overall, I just felt crummy. We finally get into an exam room and a nurse comes by to draw some blood. I thought they were just going to draw some blood so I told them to use the inside of my arm, on the other side of my elbow.

Later on, I looked down and saw they added an IV to my arm. I wish I had let her put it on my hand like she suggested. I didn’t realize she was adding an IV, I thought she was just taking blood for tests. Normally, when I’m having blood drawn, I just make sure they are wearing gloves and I turn away because I don’t want to look at the needle going into my skin.

When I finally saw the doctor, we talked for a bit. I think he ordered another chest x-ray and compared it to the one I had the day before. He let me decide on the next step. He said, “If it’s okay with you, I want to admit you into the hospital so we can figure this out.”

He had no answers and he didn’t know why I was feeling so cruddy.

I’m admitted to the hospital

I think I was transferred to a hospital room around 1 A.M. I just remember my nurse being so nice, telling me if I needed anything that I just need to let her know, and I remember asking, “Is there any way I could plug my phone in?” and she was very nice, there was a little plug in the bed.

Thinking back now, I get emotional thinking about it. It’s such a little thing, it’s kind of stupid, you’re in the hospital, and you’re wanting to charge your phone, but my husband had to leave that night because he had to go home and take care of the pets and figure out what he was going to do about work, etc.

A charged cell phone when you’re alone in a hospital room is your lifeline to the world. It keeps you connected to your loved ones. She had no idea how much it meant to me…her being so nice and accommodating.

Whenever the nurse came to ask me how I was doing, I would tell her about the back pain I was having. She would each time ask me if I wanted her to ask the doctor for pain meds. I kept saying no.

Whyyyy? Because I didn’t want to rock the boat. This was my first experience being in an emergency room and my first time as a patient in a hospital. Finally, after a few times, I said, yes, please ask the doctor for pain meds. I couldn’t bear the pain any longer.

What I learned from this: next time rock that boat. Demand answers and if you can’t, you need someone in your corner, a close family friend or a family member demanding the answers for you. And ask for what you need, or you’re never going to get it.

Once she dispensed the pain meds, it really helped. I should have known something was way wrong because the nurses had to help me out of bed to just go to the bathroom. At this point, I could barely walk, I was in so much pain.

I remember telling the attending doctor that I thought the pain was coming from my kidneys. He asked me to show him where it hurt. I pointed and he said those aren’t your kidneys. LOL I remember that conversation so vividly. We still never figured out the source of my pain.

My first full day in the hospital, Curtis stayed in the room with me. He would spend full days with me and go home, shower, eat, and take care of our dogs and cat. He couldn’t spend the night at the hospital because the pets needed to be cared for.

The entire time during my hospital stay, my IV machine would beep every time I moved my arm. I was told it did this because of where they put my IV (my idea on the spot!) when I bent my arm, it moved the needle or created a kink in the IV line.

So the IV machine would beep until someone came in and turned it off. That first night, my roommate kept coming over and pushing buttons on my IV machine. She told me she knew how to turn off the beeping noises. One time, when she was over on my side of the room messing with the machine, my nurse came in and glared at her.

On that first full day in the hospital, I noticed that my roommate, the other patient in the hospital room had left the room wearing a mask. Then I realized all of the nurses that had entered the room were donning masks on their face, and then my roommate left.

I heard the words: ‘you have tuberculosis’

Then, they came back and talked to me.

I don’t remember the exact words, but all I remember hearing was, “You have tuberculosis and we need to move you to an isolation room. We’re going to need you to collect your belongings and you’re going to have to wear a mask while we transport you to the room. It’s on another floor on the other side of the hospital. We’re going to get that room ready and move you there and get you situated.”

At that time, there was a respiratory therapist in the room. Throughout my hospital stay, they gave me breathing treatments a couple of times a day. I remember them telling me, “Oh the room that you’re getting is so great, it has a really nice view. You’ll even have your own room!” I don’t know if I responded out loud but I remember thinking, “I don’t really care about the view!”

I was put on a stretcher and wheeled to my new room while wearing a mask. It felt like a long ride on the stretcher just to go to the other side of the hospital.

After we got to my new hospital room, I was told that I wasn’t going to be able to leave the room. The room was an isolation room that had negative pressure. Meaning air could come into the room but it wasn’t able to leave the room so there wouldn't be cross contamination with the rest of the hospital.

It turned out there was a whole procedure for this room and my illness. Any time a medical professional wanted to enter my room, they had to wash their hands in the sink, which was in a little room connected to my hospital room. Before they could come into my actual hospital room, they had to put on a disposable gown, put on a mask and gloves. When they left, they had to remove all of the gear they put on and wash their hands again.

Any time a nurse came in and I needed to ask them for medication, or cranberry juice, or water, or anything like that, if they had to leave and come back it was a whole ordeal. I was there for about four days and I got into a rhythm with the nurses.

I would call the nurses’ station and say, “Okay, can you get me a cup of water and a cup of cranberry juice?” and I’d ask them for whatever I needed so that when they would come and make their rounds, they would have all of it and they wouldn’t have to leave and come back and waste time.

Side note: I was drinking cranberry juice because I had a slight UTI. Who knows if this was what caused my pain. They seemed to think it wasn’t serious and didn’t really seem to focus on it.

I'm all about efficiency LOL. I remember when another nurse came on shift, she told me, I heard you have a new system of calling the nurses' station. I like it, let's try that for my shift too.

To be continued…

To read part two, please click or tap over to read I was in denial that I had Tuberculosis.

The post What would you do if your doctor told you had active tuberculosis? appeared first on The Little Kitchen.

We had to make the difficult and gutwrenching decision to let Charley go on December 5, 2018. I wrote this letter a few days before.

Charley, you have been my faithful companion for over fifteen years. The moment I met you, when your daddy brought you home…I fell in love with you. I remember crying tears of joy.

Your Dad got lost trying to find the family we were adopting you from. He came home a couple of hours late. I remember sitting at the window with your big sister, Cinder, waiting so impatiently for you.

And running out the door to meet you, grab you, hold you up and I cried.

We had no idea you were only four weeks old and didn’t have any teeth. I remember the sleepless nights the first few weeks. How I had to bottle feed you and turn your puppy food into mush with goat’s milk. And how sick you were.

I remember always joking with your Dad that you were my dog, that I loved you more. But through these last couple of years…I know in my heart, that it was just a dumb joke. He loves you just as much as me.

I know this because when you were diagnosed with diabetes last year, he gave you your first insulin shot and every single one since that day even though he has an immense fear of needles. I know this because he has taken such good care of you. And I know his heart is breaking too.

You’re the first dog I raised from puppyhood to an adult and in a lot of ways, you’re the dog I was trying to take care of to make up for the dog I lost as a little girl named Morgan.

But you have become more than that because one dog doesn’t ever replace another. I was 23 when we adopted you and now I’m 38, I feel like we grew up together.

You were an only dog for four years when we had to say good bye to your sister, Cinder. Our hearts were broken when we had to make that hard decision. You allowed us to love on you so much and gave us much comic relief by stealing towels and a little seedling that we were trying to plant on Earth Day. Those trees are huge now. I’ll always think of you both when I look at those trees.

And when we adopted Angel, you took her in as your little sister. You played with her. You let her take your toys out of your mouth. You looked at us when she would steal your bed. But most importantly, you adored each other.

My heart breaks because we won’t be able to tell her that you’re going to be pain-free. That you need to leave us now. I wish I could tell you so you could understand how much my heart hurts. That you’re not a burden and I don’t want you to be in pain any longer.

I have gone through so many tissues and cried so many tears in your fur, Charley. You probably are thinking, what is up with my mama?

It’s hard to put into words, how much you mean to me. We did obedience classes together when you were a puppy and we did agility classes. Do you remember those? You were probably one of the worst agility class students but we had fun!

When you were five, we were so worried because you lost almost 16 pounds and we didn’t know what was wrong. Turned out you had a pancreatic condition (called exocrine pancreatic insufficiency) that didn’t allow you to digest your own food. Which started us down a road of a lot of medication.

Over the years, you weathered hip surgery, back surgery and another hip surgery. This year, it was dental surgery to remove a thankfully benign mass and you even survived cancer earlier this year.

You are such a strong dog. You took it all like a champ. No matter what, you always smiled. You always gave us and your vet techs kisses.

You’re the only dog I have ever know to warn us when you need to throw up, if we didn’t take you outside, it was our own fault. And the only dog I have ever known to love going to the vet.

I still can’t imagine life without you and in some ways, I think it’s so hard to say good bye to you because we have done this before. We have had to make this hard decision before. I’m imagining the grief that I know I can’t imagine.

I know it’s not right but I’m mourning you before you’re gone and that’s not fair to you.

I’m also irrational and I keep thinking that you were robbed. You have been through so much and I just want more time.

More time to pet your soft fur, more time to hold you and kiss you. More time to take you on car rides and walks.

But it’s not fair to you. Your body is giving out and I know you’re tired. You have been tired for a while.

I don’t know how to end this letter except to say I love you more than you’ll ever know.

The post A Love Letter to My Dog appeared first on The Little Kitchen.

You have probably heard the story already but my sister is the one who pushed me to start. After telling her over and over that I wanted to start a food blog. The last straw for her was when I told her I needed to get a good camera first. She told me to get off my ass and just do it.

Yeah, so I did, within 48 hours, I started The Little Kitchen. And while the look has changed over the years. The main reason why I started and why I blog each week hasn't changed. I wanted to share recipes with family and friends. And as readers of The Little Kitchen, I consider you my friend.

My friends who come back every week or every so often to read my stories, to make my recipes. I appreciate each and every one of you.

The last seven years, I have had my share of bumps in the road, there were ups and downs. But I'll just reflect on this year. For many, this year has been a huge struggle. Sending you virtual hugs if you're one of those people.

I got really really sick earlier this year and it turned out to be tuberculosis. I was sick for months, not getting answers and when I finally did, it was a huge relief. That relief didn't come until I got rid of the denial of the diagnosis though. I didn't want to believe it because they weren't able to figure it out for a long time so why should I believe them now? The maze of doctors, tests and having to take a huge amount of medication led me to not be able to work for 3+ months.

While I wouldn't wish this on anyone, my illness changed my perspective, for the better. I'm not worried about the little things that used to bother me. I'm over it. And truly, I'm grateful for you, my friends. And for my in real life friends who stuck by me. Because some couldn't, some weren't able to. And I don't fault them in any way, sometimes things come to an end. And that's okay too.

Because like one of my good friends has said so many times, life is too short for crappy food and crappy friends.

I finished all of my medication for the TB in October and just had a follow-up CT scan…which I'm hoping will be my last for a while. I have also thought about sharing with you all about my treatment and my hospital stay. It was my first time in an ER (as the patient) and my first time in the hospital (as the patient) and it opened up a whole new understanding for me, on our healthcare system and just dealing with the amount of doctors and nurses. I'm still letting that swirl in my head so you'll see it here if I decide to share.

Things I have learned over the years:

• You can't make anyone happy nor can anyone make you happy…YOU have to do that for yourself.
• You can't care what others think, it's such a waste of time.
• Make sure you do what you love, don't be a jerk (unless someone deserves it) and take care of yourself and the ones you love.
• Listen to your body when it tells you to slow down. This goes along with taking care of yourself.

As we get nearer to the end of 2016, I hope you'll enjoy this holiday season and have an awesome 2017 filled with happiness and good health!

The post Celebrating 7 Years of Blogging… appeared first on The Little Kitchen.

I firmly believe that people come into our lives when we need them most.

A couple of years ago, our air conditioning unit was acting up. One of our neighbors, Jennifer*, had recently told us that they just had their unit replaced. I called her up to get the name of the company who replaced it. They were out of town and told me to call our other neighbor, Cathy, because it was her son's company. I called her up and she said she would call her son, Jamie.

Apparently, we later found out, she called Jamie and insisted that he come over during the weekend and help us fix our AC. It was July after all and we of course were having record temperatures.

A few months after that, I was talking to Jennifer one evening and she told that Cathy was sick again. Her cancer had returned. I had no idea Cathy had been sick. I did notice that Jamie's work truck was in Cathy's driveway a lot.

I told Curtis about it and told him I'm going to bake cookies and bring her some. Often, when I have leftovers from cooking for this blog, I have Curtis bring it to work or bring it over to friends so they can enjoy it. So that's how I started bringing food to Cathy. It's a joy to see her smile. Earlier this year, while I was sick, I didn't get to go see her as much. When I started again this summer, I was scared to ring her doorbell.

Jennifer had told me that the doctors had given Cathy three months to live. She had lung cancer and it had gotten worse. It was utterly heartbreaking news. Each time I visited Cathy and brought her cookies, cupcakes, soup, it was nice to see her smile but I worried about her.

The last couple of visits have been a huge difference, she's up and about, she has a lot more energy and she has a huge smile on her face. She said she is on a drug trial, an immunotherapy that was saving her life. She had energy again and she told me recently, I can't believe they told me I had one month left to live and now I'm still here.

I teared up when I heard all of this.

I visited her a couple of weeks ago and brought her some soup and pasta I had made from my friend's cookbook (check out that recipe for slow cooker lasagna soup). She was so happy to see me and declared that the food I had brought was going to be her dinner.

Somehow, we got onto the topic of my family being Vietnamese. She said that in the 60s, she was afraid her husband was going to be drafted into the Vietnam War. That it was a scary time and it was an ugly ugly war.

And here today, she had this Vietnamese neighbor who was bringing her food all these years later. Who would have thought?

I told her that even though that war was so ugly and brings back so many bad memories and the US had lost so many of its sons back then…if it hadn't been for that war, I wouldn't be an American today. I firmly believe, that if my family hadn't escaped during the War, that I wouldn't have been born here…and be the proud American I am today.

I told her my parents were refugees in Arkansas and how they were sponsored by a nice family from Texas.

It's a sobering thought, to know that borne out of so much pain and so much death, that my life here would not have been possible. And I try to be grateful every day. Every day.

*Names have been changed. There is an affiliate link in this post.

The post How I Met My Neighbor appeared first on The Little Kitchen.

You guys, I get really emotional lately. Okay, that's me all the time.

But lately I feel like more often than not. I'm still dealing with my health stuff from earlier this year (I ended up in the hospital for a few days) but I'm happy to say it's hopefully almost all over.

Last week, I had a crazy bunch of flight delays and thought I was going to be stuck in Minneapolis for the night. I texted my friend, Brenda, and she said she would come pick me up. She would take me in for the night.

And my other friend, Kristen, who I was staying with in Kansas City…where I was trying to go to. She offered to let me stay with her while I attended a conference. She kept insisting that I was not going to take a taxi, that she was going to pick me up.

I arrived in Kansas City in one piece 3 1/2 hours late but I arrived grateful. Completely grateful that I have friends who are willing to take me in. Grateful for friends who open their homes up and let me stay with them and let me spend time with them and their families.

The last 6, 7, 8, months have been extremely tough for me. Some days I feel like I have made it to the other side and most days physically, I have. Some days emotionally, I feel like I'm at square one. When I was in the hospital in April, I was extremely scared. I felt alone and I felt at some times, the doctors didn't know what they were talking about.

Through it all, I'm eternally grateful for my friends and for you…the people who come to my site every day and read it and make my recipes. You all have kept me going.

I'm often floored by the kindness. Friends visited me in the hospital, sent flowers, food and groceries to our house. I was completely floored. Sometimes, I feel so so unworthy. But then I remember, we all are worthy. We all deserve love and we deserve to have true friends who care about us in our lives.

It's that simple.

I may seem like I'm gushing…but I'm not…it's how I show my love (which I learned about last year! I'm an ENFP)…

I'm reminded and inspired by this article about always going to the funeral. Show up, be there for someone and you never know how much it means to someone, especially a friend in need.

I can't imagine where I'd be without my family and friends…so THANK YOU! And I hope you show and tell someone that you love them. Don't wait. Just do it, today.

(Photo above, tattly tattoos from ChoppedCon with my friend Susannah.)

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