I know, I haven’t posted in a while. I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.
Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post. This is part of the reason I started a blog. It isn’t just for other people, it is for me. To get things out, and to keep up with things. Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
Of course one of the main reasons I started this blog is to let people know they aren’t alone on this Chronic Illness journey. If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again. I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained. Whew! Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold. You will understand as I continue. I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles. I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear. But I’m in severe pain. They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis. I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments. I’m lucky I don’t have severe flare-ups very often. However, I do have little flare-ups often. This has been a VERY SEVERE flare. I went to the doctor on Monday, February 2nd. Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection. She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.” She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues. Some umbrella condition. You know I’ve never had a doctor say that to me before. I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much. I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of. I think I might just talk to her again. (she works with my new PCP)
On the way home from this doctor’s appointment I had a vertigo attack start. Got home and it was BAD. I’ll leave it at that. You all know how what a BAD vertigo attack is like. I didn’t keep up with how long it lasted. I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark. I woke up sick again and it was about 11pm. I was so nauseous for 2 days. I’m not normally like that. Usually after an attack the nausea leaves me after a few hours. The anti-nausea meds work pretty well. This time, I was really sick for days. Ick.
On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip. This had to be rescheduled. They didn’t have anyone who could do this for TWO weeks. 1st thing that was put off because of something else going on with me.
The next day I had an appointment with a new neurologist at the Headache Clinic. I had to reschedule because I was simply too exhausted to even move my head, and too nauseous. I was afraid if I pushed it I would have vertigo again. Now my appointment is in March. *sigh* 2st thing that was put off because of something else going on with me.
I went to see a new Pulmonologist on January 30th. My breathing test came out good. I do not have COPD. That’s good to know. So why am I coughing up phlegm every day? EVERY DAY since October of 2012? Yes my breathing is better, but this coughing up stuff is gross. I get awful looks. People seem to think I have some horrible disease. I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer. And my new doctor said, “I don’t know if you have Asthma.” What? He said he needs to see my old records. He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test. A lot of people don’t want to do this test, they’d rather just be treated for the symptoms. Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it. That is what the doctors did with me. However, I was not presenting with the symptoms when he saw me. So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough. So I need to have a barium swallow on Friday, February 6th . Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th. 3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip. It is set up for this Friday, February 13th. I will know soon if my hip does in fact have avascular necrosis. If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything. (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come. After all, none of my worrying about it will change anything.
Want to hear something really funny. After all of the things I’ve been through. All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water. I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes. But I have to use these food restriction of I get sick.) I have been told in the past to restrict my intake of chocolate because of migraines. Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me. I just didn’t over do it and I was fine. Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK. But if I limited it to my little square I was good, all the way around. And I was a happy girl. I could still have chocolate.
Then it happened. I had my square and immediately I got the worst migraine. Oh no! and my bladder started to scream! What? No!!!!
I waited a week. I tried it again. It happened again! NOOOOOO! Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
onions and garlic
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!