Whew I am overwhelmed. Let me back up here a second and catch you up to speed.
On Saturday night I felt so defeated. I felt defeated and overwhelmed and felt like a failure. I was grieving how much my chronic illnesses have robbed from me. I was upset. I don’t have a local rheumatologist, they didn’t want me because I was too complicated or they had nothing to offer.
I was upset that I have to wait until September to see my rheumatologist in Cleveland. I see her once a year now which wasn’t supposed to happen. I only am getting seen once a year by a rheumatologist. Before my local rheumatologist quit I was going every 3 months basically. Now it all falls on my primary doctor.
I’m overwhelmed because I’ve tried several times to message my doctor at Cleveland and it seems it’s always somehow my fault or that I can’t possibly be running a temperature like this. The rheumatologist I see is good but there always seems to be a few issues. So I’m very thankful for my primary doctor.
I’ve been with this doctor since I was a baby. He knew what I used to be. He saw my entire decline the past 4 years. Since he is more in charge of my care now he has been really trying to relieve some of my symptoms. In May I was hit with the worst flare-up I had yet. My flare-up temp was 104 and I was in bed for about a week. I was so tired and weak. So he put me on a big dose of steroids which helped a lot. Then 2 weeks went by and it all came back. So I was on steroids again for awhile, then moved to every other day. It’s helping me go each day.
I met with him last week to go over what’s next. Being on steroids for a long time isn’t the best thing- you get in a pickle basically. We will now try to go every 3 days and see how it goes than hopefully after a month we can go to once every 2 weeks. It’s the only thing to help the swelling and redness and warmth in my joints. It’s the only thing that truly lowers my body temperature. It does so many other things. We are trying to space it out since the side effects are getting more prominent. However if my body can’t handle every 3 days we move back to every other day. I got a steroid yesterday which helped but the 3 days in between was rough.
At the appointment we asked if we are any closer to a diagnosis since steroids are used a lot with things like Lupus and Rheumatoid Arthritis, etc. The answer was no. The only thing we know for certain is there is obviously inflammation in my body and I have blood work to back that up. The problem is POTS and Fibromyalgia don’t cause inflammation like this. This is where we are dealing with the unknown autoimmune diagnosis.
So I’m glad I have a doctor that is working with me and trying to help relieve some pain and listens and believes what I say. I call or message several times to either check in or call that I’m not feeling well. They always listen and get back to me as soon as they can.
On Saturday night it had hit me that I’ve been sick for 4 years. I was thinking how much has changed in 4 years and how I just seem to be getting sicker. I’ve been robbed by a lot of things and it keeps adding up. I’m grateful for all the blessings in my life too and the prayers and friends I’ve made and connected with. Sometimes it’s ok to be sad and push into those feelings. My counselor has been helping me with that. I used to think I can’t cry or be upset because look at all the good things. I felt selfish if I got upset or cried. She has taught me so much. When I’m feeling that feeling I have to push into it and sit on it. I have to experience the feeling instead of pushing it down.
I’ve been dealing with this stomach pain for a year with no solid answers. I’ve had lots of blood work and an upper GI. I left the gastroenterologist and decided to pursue an allergist/immunologist. Thanks to my friends on Facebook I got very good recommendations. I took the advice talked to my primary doctor and got to meet with this allergist. He has been so helpful.
He also did a lot of blood work to check for allergies. We were all shocked when everything came back fine. We thought for sure I would be allergic to wheat considering my reactions to eating gluten. The only thing that came back positive were dust mites and cockroaches. We were all confused. He spent the rest of the appointment checking my nasal passageways which are pretty much swollen shut. He talked about my photosensitivity rash and told me which sunscreen to try and it’s been working so much better. I also got a prescription nasal spray which helps.
The next appointment we focused more on my stomach. He could see how bloated it was. It’s been bloated basically for a year. I have IBS so we followed that diet strictly and I wasn’t getting a ton of relief. He asked how my mouth feels at the dentist (which I thought was a really odd question). I said it usually burns and swells a bit but I think it’s due to being born with a cleft lip/palate. He then asked about band-aids to which I said yeah as I’m thinking about it there is usually red around and it burns. He said you have a latex allergy. I thought ok another allergy how is that going to make me feel better. Turns out there are certain food that mimic latex and so when you eat these foods your body thinks it’s latex. This is why nothing showed up on the blood test. He gave me a list of foods and products to watch.
Many scents have bothered me including more recently fresh flowers which makes me so sad. He said the food thing is kind of trial and error. I’m ok with meats thank goodness that’s not on the list. We can’t figure out why I react to gluten but I do so he said just remain gluten free. Veggies trigger it for me but if they’re cooked it’s not as bad. I don’t do broccoli or cauliflower. There are a lot of fruits I can’t eat anymore like apples. I can’t eat any peppers which made me sad because I loved peppers especially the yellow ones. Beans are just not good. Potatoes and tomatoes seem to be hard on my stomach too. I don’t do pop or any type of sparkling beverage anymore. I sometimes try but in a few sips it’s instant pain and bloating.
It’s been a lot to deal with and manage. It feels like it’s another thing my chronic illnesses have ripped away. I was always so grateful that my stomach issues from 2014 had really calmed down by 2016. For the past 3 years my stomach was doing really well until last year. I was so grateful everyday that I wasn’t having stomach issues. Then it came and stayed. I can easily loose 25 pounds or gain 25 pounds. I don’t eat a lot anymore and my bloating is so bad and I just always feel swollen.
Two weeks ago my stomach had a huge flare-up and I’m still dealing with it but it’s settled down a bit. It’s bloated to the max and the if you’ve experienced gas pain you know it’s the worst. It’s all over my body. It feels like I’m a pressure cooker. So we are still working on getting the pain to get a little more manageable.
So right now I feel like there is so much weight on my shoulders and it’s so overwhelming. Living with a chronic illness is truly a never ending feeling. Just when you think you can maybe manage again and you’ve got a grip on it a big detour shows up and stops you. It’s overwhelming and it’s hard to explain the amount of guilt you carry with it. My thoughts are to blame myself automatically. I think that partly comes from society. What I mean by that is think of a time you’ve said something that you’re not feeling good or something. You aren’t looking for advice or tips but people just keep giving them to you. It soon becomes well, if these people have so many ideas it must truly be something I’m doing to myself.
I’ve learned it’s just better to say sorry you’re experiencing this and I’ll be praying or sending good vibes. Then you can say, if there is anything I can do to help you out let me know. I know tips are coming from a good place but when you constantly get them it truly begins to feel like – well everyone here thinks I’m failing and can’t take care of myself.
So this blog post is hard for me to write and it’s really hard to hit the publish button, and I’ll tell you why. I begin to think well this just goes to show how much I’m failing and how I can’t properly manage my disease. That’s the depression talking to me. I know there are people out there with chronic illnesses who probably experience similar things and feel overwhelmed. This blog post is for you. I hope it can help at least one person. It helps me to gather my thoughts and get them out. I sit in the feelings when I’m writing and then I truly try and let it go.
“When my heart is overwhelmed lead me to the rock that is higher than I.” – Psalm 61:2
This blog post contains no medical advice please contact your doctor for any questions or advice.
I’m praying for you, sweet friend. You are incredibly brave and strong, much more so than you realize. If there is anything I can do, or if you just need a listening ear, please never hesitate to reach out! XOXO! ❤️