This is one of those blog posts that may feel like rambling to you ( I hope it doesn’t) but I needed to get my thoughts out and this is where I can do that and also raise awareness. My personal experience with chronic illness is that you truly have to go with the flow. There will be ups and downs. There will be months, years possibly with no answers, or diagnosis. In May I usually reflect on the past year as April marks the “anniversary” of when this started. I realized I really have been going with the flow since November. From moving in October, to my rheumatologist retiring and not getting accepted to any local ones since I am too complex- nothing new to offer, and I am at Cleveland. To starting a continuous “low” grade fever, and recently a sprained ankle that isn’t healing and keeps spraining.
I met with my family doctor on Tuesday and we just went over my symptoms, noting that I was in yet another flare-up. We are at the point now where this fever is normal and we actually kind of laugh about it. It’s either laughing or crying (and to be honest dry eyes and crying don’t mix well so I just laugh it off and I deal with it better by thinking on the positive side). When this all started many of my doctors prepared me that I would eventually have these low grade fevers that were going to last longer than 1-3 days as I was already experiencing that. Those weren’t frequent and went away pretty quickly after resting. Then this July I started a temperature that lasted for a week so on the 2nd week we ran more blood tests, the normal checkup + the auto immune checkup. All the things came back fine except my inflammation was a bit high which it usually is. I remember being so bummed because I thought I would finally have a positive test result! Wrong! I got really depressed after that. I was mad at myself and my body, what was I doing wrong? Then came August & September & October – a pretty persistent ear infection and a 1-2 week on and off temp. Then came Thanksgiving. We went shopping for Black Friday and all day I didn’t feel good but just chalked it up to doing too much. I decided to check my temperature when we got home and I had a low grade temp. Little did I know that I would truly be going with the flow. This little temperature I haven’t broken since that day. I just want to state a few things before going on.
1. This is NOT I repeat N O T contagious.
2. This isn’t a flu or virus fever this is “flare-up” temperature
3. I take Tylenol to help bring it down a degree (doctors orders not my decision yes we know taking it long term isn’t ideal but this is where we are)
4. I do get chills and get very hot
5. The warmth from the fever is in different parts of my body like my back maybe on fire but my forehead is ok.
Okay, so I will go into further detail now. So my doctors here and the doctors at Cleveland are very certain this is an auto-immune fever based on the symptoms of it and how long it has been lasting. We just don’t which one(s) are causing it. Remember it can take 5-8 years for an auto immune diagnosis. I can’t do steroids because of my high blood pressure and I have already done 3 rounds – I think one each year? You are supposed to be careful with those and my doctors told me they don’t really like to prescribe those without knowing what auto-immune disease we are dealing with. The truth is I am so used to this low grade temperature right now I forget what it feels like to be under 99.5 (thats the lowest mine will go right now). I dress in layers right now because I don’t know when I will get chilled or when I will get hot. Also with POTS my body has a horrible time regulating temperature so when it’s already really off I don’t really have an in between. So I have to be prepared for all temperatures basically. My temperature ranges from 99.5-104 right now. I know 104 sounds bad but it’s ok. I have had numerous tests done, and I even had an ultrasound to make sure a virus wasn’t hiding in my heart valves. This is not a contagious temperature in any means. My body isn’t fighting a virus it’s fighting myself and getting confused and in turn causing a fever. This summer my doctors plans are for me to take it very easy and get as much rest as I can. Our goal is to get this temperature to break by July. (SO if you’re a prayer warrior I would appreciate all the prayers). I am truly going with the flow here. I know you might be thinking why aren’t you pushing for more answers. Well, I can’t really change my blood tests and I don’t really want to get pricked once a week either and that costs money. If we are being honest having a diagnosis isn’t really going to change much expect giving it a name and altering treatment plans; but the treatment plans are rarely 100% effective.
Now with the sprained ankle (can we insert some eye rolling emojis here). At the end of February I simply stepped out of the van and my right leg felt really weak and it just rolled to the right and to the left. It was really swollen and got really bruised. We gave it a week then headed to the doctor. It was improving. He told me this is par of the course now. My body is just kind of falling apart. So I “write” the ABCs a few times a day (it gives your muscles strength and is very good for this type of injury). I do it to my other ankle as well to prevent that from spraining. Fast forward to now (May). I keep rolling my ankle and it has a beautiful bruise. So I am getting referred to another doctor to get that checked out. Seriously, another doctor (haha) really going with the flow. Who knows maybe this doctor will the piece to my missing puzzle. If you have been following me on Instagram and or Facebook and noticed my ankle wrap that’s the reason. I am hoping the “diagnosis” is just that it is going to take my body a while to heal.
I could choose to get overwhelmed and angry at this viscous cycle I am in right now, but instead I choose joy. This stuff is out of my control and I don’t want to waste what little energy I have on being frustrated. Does this mean I am happy with how I feel right now, no; but I can’t control what my body is doing right now, I can focus how I choose to deal with each day and how I choose to talk to people. There are days that I get upset and sad but I usually pick myself right back up. Also May is Mental Health Awareness Month. I am planning on blogging about that next week.
If you have any questions please comment below or e-mail me, or you can reach out on social media to me.
“The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.” – John 10:10