You may remember when I had the rheumatologist here locally and he ended up retiring early, I was so sad because he was a doctor that validated me and gave so many tips on resting and how far I could go. He was on our side and he really wanted to get the answers to diagnose me. I haven’t had a really good experience the last few visits with some of my doctors. I love my nephrologist but I only see her once a year (which is really good) my family doctor has always been really good. The last few appointments with my gastroenterologist were bad. I had my CT scan done a month ago and they still never called me back with results I looked my results up on my patient portal. I know I could’ve called them and schedule another appointment but the problem was I didn’t want to. That doctor wasn’t being nice or helpful to me and it wasn’t good for me mentally.
I’ve been having hives off and on since May. I’ve had to go on several rounds of steroids to calm them back down. I just got off the steroids about 2 weeks ago. The family doctor and I decided it was time to see an allergist. My instant thought was crap a new doctor I have to find a good doctor. I can’t go through this again right now. I asked on Facebook for recommendations. There were 2 doctors that were mentioned a lot. I went with the one closer to us and let me fast forward a bit I am SO thankful for this doctor.
I’m going to take you through the appointment a little bit because I was being validated the whole time and wait for it he was helping me with my stomach pain more than my gastroenterologist has! So I had this appointment with the doctor who is an allergist & immunologist. He was so knowledgable and had such good bedside manners! First of all he didn’t make a single comment or question my previous diagnoses. He didn’t make me ever feel like anything was my fault in fact he gave me straight up facts so I couldn’t even try to blame it on myself. He spent an hour with me. This appointment was more focusing on the allergy part and he would take time to explain things to me. We even were joking around some which is always a good sign. The next thing I learned was so fascinating and makes so much sense. First of all he looked up my nose to see what was going on with my allergies. He said my right side was basically swollen shut and my left side wasn’t far from that. I asked if it had anything to do with my cleft lip and palate. He said it plays into that because it changes things structurally and that’s probably why that side was more swollen. He got out a picture of the inside of your nose and he explained everything to me. Your nose is pretty much an air filter for you. Then it goes through the part that creates some mucus which normally just goes down your throat normally without even noticing it really. Then he asked do you know what your sinuses do? I honestly never really thought about that I just figured it had something to do with mucus and snot. I was wrong! They are air pockets – you have 4 on the “front” of your face, forehead, and cheeks. You can see in the picture below that mine are swollen. I circled where it’s swollen and you can see my cheeks are swollen. Some days it’s really noticeable. I always said somedays my glasses feel really tight and I wasn’t lying it’s because my cheeks are swelling.
You also have sinuses behind your eye to protect you from having your skull put a lot of pressure on your face/head. So guess what when sinuses get swollen they can’t handle the pressure very well which plays into my daily headaches. So when your nose is swollen the part that passes through and mixes with mucus is swollen so you’re not making the right kind of mucus it’s all sticky and slimy now. Everything gets essentially swollen then. It puts pressure on my ears, it puts pressure on the lymph node drainage so instead of draining properly mine gets pushed out through my bottom eyelid. Then he asked when you wake up is your mouth open and do you have a sore throat to which I said yes. He said that’s because you are a mouth breather (if you love stranger things you will know that I secretly was cracking up) because my nose can’t filter and is so swollen I breathe through my mouth and your mouth can’t filter things out like your nose. The sore throat is from having my mucus messed up and it dripping a lot and mouth breathing contributes to my dry mouth. My eyes are always a mess when I wake up they have wet crappy stuff on my eyelids which is due to my lymph nodes not draining right. He told me you’re not choosing to breathe through your mouth or nose it’s just literally what happens and your body does that, you don’t really have control of that. So how do you get the swelling to do go down? Prescription nasal spray. It smells so bad but I know that it’s here to help me. I go back to the doctor April 2 and we will check the progress; then based on what my nose looks like I will just continue the nasal spray or a pill will have to be added. He also told me in my case I take loratadine (generic allergy med) is just treating my symptoms not the problem the spray and pill will fix the problem. I’m still supposed to take the allergy med. (Also I’m not giving any medical advice or saying do this, I’m just sharing my experience and what he found with me.) The Benadryl I can take as needed as hives show up since right now we don’t know what’s causing it. He then joked with me and said you’re just an allergic kid. I laughed and the appointment had gone so well that it wasn’t said to make me feel bad or like this was my fault. I know I’m a complicated patient and I really appreciated how he said that without making me feel bad or saying “you’re just complicated sorry”.
So I’m sure you’re curious to hear how he handled my stomach issues. I’ve been dealing with stomach pain since July that got much worse in October and now I’m just used to it but it still hurts and the bloating is still terrible. He first acknowledged that my stomach was really bloated and he listened to everything I was saying and didn’t interrupt trying to challenge what I was saying. He also acknowledged that IBS can be a pain on it’s own. He had a patient that lost the 40 pounds she gained because of IBS- it was 40 pounds of water weight! Then he was talking about the bloating/gas he told me it has to do with air getting trapped in your colon and it pushes up to your stomach. It’s not caused by something I’m doing or eating. It’s how my digestive tract is working and with the IBS that doesn’t help. He was explaining how there is water involved in the colon and when you have IBS the water gets messed up which causes the constipation or diarrhea (yeah I said it). Did you hear nothing was my fault? My gastroenterologist literally told me gas isn’t a natural thing in our body and I’m obviously eating & drinking things that are causing me to have all this gas. He tried to blame everything on me even after I had the scope done which showed inflammation in my stomach. I’ve lost almost 20-25 pounds since July the last thing he did was a ct scan and everything came back normal but they never called or scheduled a follow up. I wasn’t that upset because I honestly didn’t want to go back to him. When my new doctor had explained to me how everything works I felt a huge weight lift off my shoulders. I may have been smiling because finally someone understood and is going to help find answers. We talked about how I’m pretty much gluten free because when I didn’t eat gluten free I could feel the difference fairly quickly. He said allergies can really affect your stomach because you’re not feeling good and you’re allergic to something you don’t know. He took 6 vials of blood to start out with. Testing for gluten, green beans, tomatoes, potatoes, dairy, corn, chocolate, grapes, all meats, peanuts, tree nuts and I could be forgetting one. He said we are going to start here. He has 17 food allergies so he was extremely helpful and I know going forward if I’m allergic he will really be able to help me. I’ve been wrapping my mind around trying to be prepared to be allergic for something. My mom had asked the gastroenterologist if I could have an allergy since I didn’t have celiac. He told us no you can’t be allergic to gluten and it is probably just intolerance to gluten. We told my new doctor that and he laughed a little bit (he knew my gastroenterologist since they worked at the same place) and said yeah we’ll see about that. Again I was validated! Oh and another thing I got diagnosed with was photosensitivity so I have a rash/pimple like things but I also have a different rash and weird skin stuff. I showed him the hives and rash on my face and he looked at it really closely and touched it and said yeah that looks like an allergic reaction. I almost said can I get you to repeat this so I can tell all those doctors “see I told you this wasn’t acne”. He went over what sunscreen I should use. Turns out the sunscreen we bought a few weeks ago was perfect!
I’ve been so much happier this week. It’s hard when you repeatedly get passed around to doctors who like to blame things on you instead of admitting they aren’t sure what’s going on or they don’t have any type of plan for me. When you have an appointment when you feel validated the whole entire time and there is no question or accusation that I was causing this. He didn’t give me any false hope either. It’s really hard when a doctor tells you “oh I’ll have you out of the wheelchair in a few months, etc”. After the 2nd time you get told that you stop believing them but to hear it over and over didn’t make it any easier.
On March 5, 2020 I was listened to, I was understood, I was getting help and receiving help, I was validated. I was so happy.
“Listen to advice and accept instruction, that you may gain wisdom in the future.” – Proverbs 19:20