Showing posts with label infection. Show all posts
Showing posts with label infection. Show all posts

Wednesday, January 28, 2015

F the "F" word in CFIDS (it confuses people)

I haven't blogged in a while. It was a mix of reasons. I had no big news updates on my health. It's all as it has been. I doubt daily updates about PT or not getting out of bed are of interest to anyone. So I've just shared some rants or pictures on FB and IG. I was going to put this rant on FB but it got long, too long for a status.


So here it is. I've been sick for over a month, because CFIDS and interaction with humans carrying germs. In the last week and a half I've been to see a doctor three times. Not much came out of this, except I have a sinus infection, I don't have strep throat, and CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME is the worst name for this disease. Few doctors know what to do with it. So instead of being treated as a patient who can't kick an infection because of a weak immune system, I'm treated as a head case or as though CFIDS isn't real. Instead of getting help I've been defending my condition and my medical history. I've been attempting to educate a doctor on the realities of my life, not to be condescending, but in hopes of receiving better care. Life with a deficient immune system is a never-ending series of doctors, and my experience has been of the extremes: the doctors who get it totally understand and are amazing, and the docs who don't really, really don't. 

So primarily for my need to vent, here are pieces of my exchange with the doctor:


Me: five to seven day courses of antibiotics tend not to work for me, because I have CFIDS. I've literally ended up taking antibiotics for 9 months in a row because of my immune system.
Doctor writes a script for a 7-day treatment. Upon seeing me for a follow up 11 days later, during which time I've gotten worse, she says, "well, it should've worked. It's the best antibiotic."
(My body sucks. It doesn't respond to a 5-day treatment or a 7-day. This is why I try to avoid antibiotics, in hopes that an infection will run it's course. Because otherwise I'll have a month of antibiotics. I know it "should've" worked, but having CFIDS means a lot of medical "should" and "should nots" don't apply.)


Dr: I'm going to recommend that you follow up with another doctor, see about all of this stuff. The sinuses not clearing up, the sore throat, the tender lymph nodes, the pain, needing to use your inhaler... You should get some tests done
Me: well, I have Chronic Fatigue and Immune Dysfunction Syndrome. And with that chronic sinusitis and chronic bronchitis. This sucks but this isn't abnormal for me.
(Do I need to get you a pamphlet on CFIDS? I don't need tests. I've already had all the tests. My thyroid is fine, I have high levels of various viruses in my system, I don't have low levels of immunoglobulins, etc etc etc. I've met the criteria for a CFIDS diagnosis, and eliminating other possibile diagnoses three times in my life; one if those times was a year ago. Every time I have hoped for a different diagnosis but this is what CFIDS is and does. This is it.)


Dr: what day will that medicine run out?
Me: I'm not sure, it's in my pill case, so I don't see how many are in the bottle
Dr: are you taking this as prescribed?
Me: yes, twice a day
Dr: I don't think you're taking it as prescribed
Me: I don't take it from the pill bottle, because I have a weekly pill case. I fill it up with my appropriate doses for the whole week in advance. That's why I don't know how many I have left, they're already in the case
(Because the patient must be wrong. Otherwise maybe the doctor is wrong or the medicine doesn't work!)


Me: I also have this rash. I know what it is; it's an allergic reaction to surgical glue used to close an incision from an operation almost 2 years ago. It doesn't flare up often, but when it does my Hopkins doctors say I'm supposed to use a topical steroid cream.
Dr: you're already on oral prednisone. You can't mix that with a topical steroid. The 6 day pack should cover this. It'll clear it up. 
Me: even though there's only 2 days left of prednisone and this rash started when I was already taking the prednisone orally?
(*bonus* we came back around full circle to the results one should get from medications and how my body doesn't work that way. Bam!)

Tuesday, June 11, 2013

Days of Rest, Physical Therapy, Sinus-y, and Stairs

The last few days I've been developing a sore throat which keeps getting worse and worse. It has grown to include ear pain, sinus pressure, mucusy congestion, sneezing, and all sorts of other fun symptoms. I regularly take allergy medicine, both a preventative in the morning and Benadryl at night. I'm also fairly certain the monsoon rains have temporarily wiped out all allergens. I'm also on an antibiotic (for other stuff) so I'd like to think I didn't manage to get a sinus infection while on that. Unfortunately a sinus infection is exactly what this feels like. But who gets those in June? Ehh, people with no immune systems I guess. Still, I'm trying to see if this yuck will run it's course, because 3 antibiotics in one month seems like plenty to me. A fourth seems like death to the traces of whatever immune system I have left. So I'm taking my nasal spray and drinking my homemade tea, a blend of eucalyptus and mint. 

Eucalyptus is a decongestant and an expectorant, with natural antibiotic properties. Mint can also relieve congestion in the respiratory tract, so it's useful in treating bronchitis, sore throat, or a cough. It also can be used to reduce a fever. Mint is a soothing herb and can be used to treat headache, backache, and neck pain. So this is my super tea. 

I love that the steam is visible in this picture. Piping hot. 

In other fun news, I fell down the stairs last night. Sometime after 2 am. I wish I could tell you that's uncommon, but it's not. That's why I almost always use Kevin's help to go up and down stairs. And if I'm being "independent" I scoot down on my butt. Or go very slowly, with a death grip on the railing. 

But last night, in the middle of the night, nearing the witching hour, unable to sleep, in pain, for a foggy moment I thought I was a normal person and approached the stairs as such. Luckily for me and tragically for him, Kevin is a light sleeper. He woke when he felt me get out of bed. I can only assume he figured I was going to the bathroom and didn't think twice about it. Until he heard some thuds and crashing sounds. Then he came running --yes, because he's a normal person he can RUN down stairs and be okay-- to my aid. He tended to me, asking what hurt and hugging me. I cried, half out of pain and half out of frustration. 

After making sure I was okay, Kevin asked me what I needed so badly from downstairs. I told him an ice pack. I've been in extra pain since Thursday, because of starting Physical Therapy, and my session earlier in the day was responsible for keeping me up at night. So he got me an ice pack and took me upstairs. 

As is typical for us, I profusely apologized and thanked him, feeling terrible he has to deal with such events regularly. And he told me I had nothing to apologize for, he loves me and it's not my fault. 

This is a concept I'm still working on learning. I'm in the process of embracing this lesson. 

As I'm writing this blog, my little monster is staring me down and whining and whimpering. We JUST went outside so he could go potty, and he got a treat when we came in, so I'm not sure what he wants, other than for me to stare back. 

Anyways, back on track... Physical Therapy. I started Thursday and it was hellish. Day 1 of PT is always an evaluation to document where your body is when you begin treatment: range of motion, pain scale, severity of symptoms. So they did all the painful stuff my doctors do, and then some more. They warned me I'd have a rough few days following, and they were right. It certainly caused a flare up. 

The good thing was they can feel just how bad I am. It's not me saying I'm in this much pain, they can literally feel it when they touch my body and move my neck and/or arm. I can't begin to explain how validating that is. There are definitely days when people with a chronic illness (or maybe it's just me) feel like they must be crazy, like it must be in our heads. But then you see a doctor who diagnoses and evaluates based on touch rather than listening to your description or looking at X-rays and your nightmare is confirmed to be real, and really that severe.



They really can and did confirm I have TOS, still, just as bad as I did pre-op, and if anything I have more symptoms from removing the muscle. Not TOS symptoms, but pain in my neck. Apparently the middle scalene (the muscle I had removed) is partially responsible for the movements of the cervical spine. Meaning, for the last 2 months my spine hasn't been moving the way it used to, thus causing extra pain. 

Because I am so "pain dominant" and have this particular diagnosis, the protocol they follow with me will be remarkably slow and subtle. They said this isn't a condition they tackle with a "no pain, no gain" approach. Most of my session involves laying there and having specific nerves gently manipulated by the therapist. They've instructed me to tell them if it hurts, even ever so slightly. Everything (except that initial eval) should cause me no pain or feel slightly better. 

Yesterday's maneuvers didn't hurt while I was there, but apparently they did aggitate me. Remember, I fell down the stairs trying to get an ice pack for the pain. I can't even begin to describe how...nothing these maneuvers are. I mean, one is literally wiggling my pinky finger. Yet the therapist tells me they can feel my body resist and tense up, if they move a smidge past the gentlest pressure and angle. It makes me feel slightly pathetic, but like I said, it's also incredibly validating to know the hell I've been going through is 100% real and I'm not crazy. They also can feel that my top rib on the left side is at least a thumb widths higher than on the right side. So that's definitely part of the problem. They are optimistic that they can help and said just because it's that bad doesn't mean I definitely need it removed. 

My therapist is very knowledgeable in both TOS and CFIDS, so I feel like I'm in capable hands. It'll be slow work, but if anybody can help me to avoid having my rib removed, I believe it's the people at this practice (Fusion Physical Therapy). Because the top left rib is so high, if they can help, I'll have a life of maintenance ahead of me -- it won't be a few months of PT and then I'm cured. But hopefully I'll get to a point where I can function on that maintenance program. 

Partly because of PT, the last few days have been a lot for me. Like I said, I started with my hell-eval on Thursday. On Friday I had a rough doctor's appointment that also exhausted me and drained all the energy from my body. Kevin is going through a lot with the end-of-school-year hustle and bustle, so he had no complaints about just resting Friday afternoon/evening and all day Saturday. We made pancakes for brunch both days, but besides that really laid around doing nothing, just relaxing. We both needed it, but even that wasnt enough for me. 

Sunday was Froehlich Family Day at Nationals Park (for the early game). Once a year, my father-in-law treats everyone to a game together as a family. Tickets, food, and drinks are all on him. He and my MIL have club level season tickets, but for this game we were all together in section 126, just off the first base line in foul territory. My brother-in-law and his wife came and brought our nieces too. It was really great family time, but a very hard day for me. It was sweltering hot, and some of my meds make me hot anyways. Plus being run down from Thursday and Friday. Plus my medicine that makes me sun-sensitive. I spent 2 innings up near the food shops, just to get a break from the sun, but I did manage to last the whole game. 

That's it for my updates. But before I end, I want to tell you why Blaze was staring and whining earlier. He didn't stop, so I finally went over to him because sometimes if you do that he'll lead you to what he wants. So he took me to the stairs to go to the basement to get our back, paused, then took me to the front door, indicating he wanted a walk. I told him we had to wait for his daddy to get home from work, for our afternoon family walk, but that we could go out back again. I figured I must've unknowingly rushed him and he needed to poo. So I took him out back --again-- and sat on the HVAC fan to stay out of his way. He sniffed and explored and seemed quite leisurely. Not needing to poop. He settled himself down on the slab out back and laid down to sunbathe. He had always loved laying out in the sun, and it's a gorgeous day. I tried to go inside and sit just inside the door, since I'm sun sensitive, but he followed me inside. So we compromised. I opened the living room curtains and window and put some pillows under him so he could lounge on the top of the couch, as he has always liked to do. He thinks he's a cat. The compromise sufficed. He was happy to get sunshine and fresh air, and I was happy for peace and quiet. 


Sunday, May 5, 2013

Real time

9:29 EST Sunday night, May 5, according to my iPhone.

Where I am going? Home.
From where? The ER
Why? Because my ankle is the size of a baseball.
Why? Because it's infected.

How did I get infected? Because I wore a pair of heels, and they rubbed my foot raw (as the price of beauty is pain).

How did it get SO swollen? Because I thought it was just a scrape and didn't feel the pain until it got SO bad because I'm on an obscene amount of pain meds already. This incident happened days ago.