Chronic Illnesses, one comes up, another is put on hold….

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.
image courtesy of pixgood.com

image courtesy of pixgood.com

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.

Dark Chocolate image from medicalnewstoday.com

Dark Chocolate
image from medicalnewstoday.com

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.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

 

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16 thoughts on “Chronic Illnesses, one comes up, another is put on hold….

  1. If someone took away my chocolate, you should just take me out to a pasture and SHOOT me! My question to you is did you change your chocolate? If so, it might be the chocolate that you changed to. Have you tried the high percentage dark chocolates? Godiva has one and I believe Lindt does as well. Both easy to find in the grocery store.

    While I’m thinking of it. If you go in for a CT, see if they can switch it to a full body scan. That way, you can send your scan to ALL your doctors and they can see results! 🙂

    Hope you two are doing well.

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    • Terry,
      I didn’t change my chocolate…I don’t think. I always eat high percentages of chocolate from fair trade sources. The last bar I had was 85% from Trader Joe’s I think. Or it was one of my favorites…and Eco brand…i forget the actual name, but it’s expensive so it forces me to only eat a tiny amount now and then. I might try it again. 🙂 I think I normally get 90% from them. Yes I like it DARK! which is supposed to be worse for migraines, it has more tannins in it. But milk chocolate…why eat chocolate at all? Remember when you were little and Dark chocolate was vile stuff. haha, how my taste have changed. Maybe I should eat a little milk chocolate just to see if it will bother me. shudder

      I can’t change the CT scan to a full body scan, my insurance wouldn’t pay for that. The doctor has to order it. This scan is what they call a thin slice scan so it is even more expensive. CT’s show slice photos of your body…well like x-ray slices…they are normally so far apart. This one is going to be much closer together. Very thin slices. They are trying not to miss anything. and it it just of my hip. They are trying to see the necrosis, any cracks in my hip, any deformation of the bone, anything. Since I can’t have an MRI, this is the only thing they can do. Except go in there via surgery and look.
      I don’t really know how much good a full body scan would do. I think a lot of what is going on wouldn’t show up on a CT scan. L-(
      But thanks for the thought.

      Stuart is loving his new job. So much so he doesn’t know when to stop. He keeps saying, that he has to force himself to stop or he’ll get burned out.
      He is still amazing at how well he handles all of this. How get he is at taking care of me.
      Max is still really laid back, and Kiki has brought a lot of joy in our house. She is a silly dog, and makes us laugh a lot.

      Hope all of you are doing well. 🙂

      Like

    • I know! Can you believe it???
      I don’t know why, but your comments keep being eaten by spam!
      I just happened to go to my spam folder just now to check it, and there you were!
      I thought you had forgotten about me. 😦
      But no! You were being thrown away by WordPress! Silly WP!!
      So glad you are here! 🙂
      Unfortunately, it empties itself after a little while, so I may have lost comments you have left. 😦
      I do try to keep up with you.
      I often read your post in my email, and don’t make it over to comment.
      don’t feel slighted, I haven’t been making it over much to see anyone.
      I need to make more of an effort. I get dizzy after a while on the computer.
      So happy to “see” you!

      Like

    • Zia Dot!
      I know!! It’s just not right.
      You know there are only 2 kinds of women in this world,
      Those who love Chocolate….and Bitches!
      well maybe 3…I think I’m the 3rd….
      The one you can really love…those bitches who love chocolate. hahahha!!

      Like

  2. Dear Wendy, I am always willing to go on that ride with you. I appreciate all you do with sharing your trials and tribulations. I had the frequency factor of this urinary condition and it took more than one urologist to find the problem. Turned out that the cilia were messed up. He gave me a course of one pill and it never came back. I had to literally always be near a bathroom. I sure hope that, after all your roadblocks that Friday the 13th will be successful for you. BOO on chocolate issues! I hope this too will pass. After all, if they are connected and something unplugs from this connection maybe the trip back to chocolate will happen. Yes, I will remain hopeful for change for the greater good and chocolate is certainly in that category. I use the 85 octane chocolate from TJ’s but just 4 mini squares per day. Hope you are able to get there too. Love you bunches xo

    Like

    • Oh my dear Lisa,
      I used the High Octane too. and not as often as you. Just that little taste now and then. and maybe some dark cocoa sprinkled in my banana “ice cream”…and for a break I am actually going to post that recipe..haha. I actually thought, to heck with it, I’ll take a migraine pill and eat my chocolate once in a while! (can you believe?) then it made my bladder scream too. Dang it!
      You know I didn’t think about it being Friday the 13th. That’s great! It’s a lucky day!! Was my grand mother’s lucky day and I just took it over as mine! haha.
      I love that day, just like Halloween….well almost. Halloween is better. You get to be a monster. giggle

      love you too my friend. xoxo
      Kiki says Woof! that’s love in her language.

      Like

  3. Have you ever had a genetic study done? Back before the FDA made 23 and me stop providing health related information I had my genetics run and it confirmed some things and also gave me some new insights. Possibly you have some genetic malfunction that is leading to all this. I have noted that one genetic flaw seems to lead to more than one. For instance, my daughter has Charcot-Marie-Tooth disease and also has three heart problems including the potentially lethal Wolff-Parkinson-White.

    Meniere’s runs in families – there is probably a genetic link there. Chronic Fatigue Syndrome is being renamed because the doctors are now saying it is a real physical syndrome. I know someone who went deaf because of a genetic kidney disease. And on and on it goes.

    Someday (we’ll both be long gone by then) they will be able to run genetic tests before we’re born and fix what’s wrong so no one will have to suffer the agony of the damned. Knowing what is wrong is empowering, even if the knowledge does not fix the problem.

    Have you ever tried a good six months of weekly acupuncture?

    Like

    • No, I’ve never had a genetic test run. No one has ever suggested it. My husband has mentioned it. He’s always thinking of things. We don’t know if our insurance will cover it, and we can’t afford to do it on our own right now. But we might look into it. Talk to that sweet doctor who talked to me. She said a lot of things that are wrong could have neurological causes. I found that interesting, considering I’ve seen a few neurologist.

      I haven’t considered that much acupuncture. I’ve tried acupuncture in the past, not that much. I’ve tried it with about 5 different providers, including one trained in Asia, and I got sick every time, and I bleed. Yes, it’s strange, but I leave there with blood just running down from me, it freaks out the people in the waiting room. Always within a couple of hours I throw up. I went to regular sessions to one person for about 3 weeks and then just couldn’t do it any more.

      I had acupressure and it was nice. With my trouble with CSF, I’m not even supposed to have cranial sacral massage. So I think that’s probably out too now. and no chiropractor.

      I agree though, knowing is empowering, even if it doesn’t fix the problem. Just knowing what is wrong makes it more bearable somehow.
      Thanks for the advice.

      Like

      • In general the bleeding after acupuncture is considered a positive, not a negative. It sounds as if the acupuncture was actually working (even with the vomiting). I’ve done a lot of it and sometimes you get worse before you get better. Kinda like chemo turning someone inside out before the cure. It was just a thought and I know most insurance does not cover it.

        If the DNA studies are medically necessary (ordered by doctor) the insurance may cover it. I don’t know. If 23 and me were not being muzzled by the FDA I’d recommend going there for $107.00 But… not possible right now.

        Wishing you all the best.

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  4. Holy Sheeeeeeeeeeeeet Wendy, Your whole system is out of wack and so frustrating that there isn’t a doctor who can look beyond the “symptoms”. There is so much we know about the body and so little we know about how everything works together. The body/mind is always trying to establish equilibrium and in your case it just can’t get there. I agree with Stuart it has to be systemic – central nervous system, it’s the only thing that makes any sense.

    Sending you love and prayers. You are so courageous (even though it probably doesn’t feel that way) but you are, as evidenced by the fact that your wonderful humor manages to shine through all the suffering.
    with love,
    judy

    Like

    • Thank you judy.
      I may be taking a trip to John Hopkins later this year, my docs at Duke suggested it, when they said it is “more than Meniere’s”
      They may be able to put some of this stuff together.

      now I have rosecea. they treat it from the outside, but I think it, like a lot of things that show up on your skin, start from the inside. Just another thing that screams….my body is under attack.

      The internist I saw that thinks all of this, or most of it, is somehow connected, thinks a lot of it is neurological. So yes…Central Nervous System. Funny thing. When I have a vertigo attack the medication I take is a CNS suppressant. It is the only thing that is know to help with vertigo. I just thought that was ironic.

      Courageous? Eh….what else can I do? Curl up in a ball and stay in bed all the time? I think not!

      I’ll continue to make the most out of every day I can. I think you will like a post I have planned coming out soon….look for it. One Ingredient Ice Cream! Yum!

      xoxo
      w

      Like

  5. Not even part way thru the above — and not trying to scare you into action — but DO NOT DELAY going after additional opinions re: interstitial cystitis.

    My late friend & colleague Kate Kelly was MISdiagnosed with that, did not question or confirm the results, and only found out about it a few months before her death. Apparently, interstitial cystitis looks like quite a few other things, so a clinician well-versed in differential diagnosis is extremely important. Caught early, MOST things are treatable – even if only a bit – so they don’t turn out to be fatal.

    WHILE I’M COMMENTING: I have done what you requested, and do not intend to publish the request itself. Let me know if that is what you meant.

    I’ll be back!
    xx,
    mgh

    Like

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