joWired

Finding The LightI feel the need to shower. It’s time to come clean. Not in a drench me with lukewarm  water in an enclosed box kind of thing. I think this is more a metaphoric shower. In my posts talking about my autoimmune disease Sarcoidosis, I’ve always disguised my doctors’ names. It’s time to come clean.

I realized that those folks who do read my posts about Sarcoidosis may be looking for doctors to be their advocates. I know that the process of diagnosis, and just having this disease is emotionally draining. Not knowing where to start, or what doctors to turn to, or ones that even know what the disease is … that’s the hardest part. Not knowing. Feeling alone. Feeling helpless & hopeless.

I guess if I go back an list the characters in this long running play “Living The Sarcoid Life”  I could clear things up. Maybe a list of the ‘advocates’ and the ‘clueless’ might work. But then I also need to think of the liability of talking about the ‘clueless’ … can they sue me for libel? It is only my opinion. For now … just the advocates.

  • Advocates

    • Dr Mike = Dr Michael Rosenfield
    • Dr Rosenfield of Emerald City Medical Arts was the man who started it all. He was the one I found to replace a primary care doctor, that didn’t really care. After the lumps on my forehead were biopsied, and one of the soft diagnoses was sarcoid, Dr Rosenfield immediately sent me for a lung x-ray. When that came back with ‘shadowing’ on my lungs, he sent me for a CT scan. Within days he did more for me that a host of others did in months. He is certainly an advocate, and always will be.
    • Dr K = Dr Lincoln Kamel
    • Dr Kamel of the Eastlake Chiropractic Center has been my chiropractor since I moved to Seattle. I have to give him his props. He’s an ‘old school’ chiropractor. He does straight up manipulation. Mind you, it’s not the only thing. But he’s good, kind, and thorough. He is a healer. He was certainly an advocate for me during the whole Sarcoid diagnostic and treatment process. During this mess, my neck and shoulders felt like they were in knots. Twist twist, snap snap, pull pull … pop! Ah … that feels better. Thanks Dr K!
    • Dr Spaghetti-Sauce = Dr Ganesh Raghu
    • Ganesh Raghu M.D., FACP, FCCP is a professor of medicine & laboratory medicine, pulmonary and critical care medicine, as well as director of Interstitial Lung Disease, Sarcoid, Pulmonary Fibrosis Program Medical Director, Lung Transplant Program at the University of Washington Medical Center (UW Med). Now that’s a mouthful!  :)  Dr Raghu is one of the most down to earth, no-nonsense, tell-it-like-it-is doctors I have ever had, or could ever hope to have. I literally found him by doing a Google search on Sarcoid and Seattle. He was the replacement for another pulmonologist I had tried, but who was from the ‘patient doesn’t know anything … and damned if he’s going to listen to you’ school of backwards medicine. Though he was the one who did my initial bronchoscopy. But after that … Dr Raghu was my main man and Sarcoid specialist. Another advocate ‘for life’!

With that out of the way … it’s time for 11 o’clock update:

In the past month I’ve been in and out of doctors offices. Went to see Dr Raghu and Dr Bakewell (my new Rhumotologist) on December 17th (08) to follow up after having been taking the chemotherapy drug Methotrexate and steroid Prednisone for the past three months. The drugs were used to see if they could slow down the growth of the cystic lesions in the bones of my hands, and the associated swelling and pain. But three weeks earlier I had to stop the drugs because I was getting horrible headaches that sometimes lasted for two days. They would hurt so badly, the headaches made my teeth hurt too. Ouch ouch ouch father-fucker! My vision was also getting much blurrier, which can also be a side effect of Methotrexate. The other reason to see them was to do my yearly pulmonary function test.

Long story short. My lung capacity is now down 10% from where it was just eleven months before and my hemoglobin was up. Fuck! Fuck! Fuck! Dr Raghu also sent me for an MRI of both my hands to see if the lesions had shrunk, or new ones started. He also sent me for a sleep test. He thought that my headaches and hemoglobin rise could be caused by sleep apnea. The words I did not want to hear, were spoken by Dr Raghu. “Your Sarcoid is active”. Grrrrrrrrrrrrrr.

MRI = nothing has changed. So. Did the lesions not change becuase of the Methotreaxate & Prednisone or did they not change, because they did not change. I always have to pose these questions. And the doctors will say … don’t know. Hmmm.

Sleep Test = Inconclusive. I will have to wait two weeks for the result. I only took the test Monday (1/5/09). But the technition Surinder, said from what he could see the results were inconclusive and  may have to repeat the study. Happy happy! Joy joy!

BTW … the photo above was taken by Surinder on my iPhone. He himself is a photographer too … so I asked him to take the photo. And Tyra Banks would be so proud of me … I was “looking for the light”. Only problem is … could any photo be more unflattering. The wonders of modern drugs (Prednisone) … well that’s my story … and I’m sticking to it!

Fuck! I’ve misplaced my gun! What’s an aging overweight Sarcoid patient to do! ;)

Joe Streno
artist . musician . photographer . apple computer consultant . residing in asbury park nj with his two cats rocky & rose & living to tell tales about it

9 thoughts on “Capacity -10%

  1. Joe

    So how are you doing? I’m newly diagnosed, after a 5 year process — there’s good news (not in lungs, kidneys, heart, liver) bad news (chronic eye inflammation that just won’t quit, skin outbreak on both legs) and questions yet unanswered — is the sarcoid the cause of my chronic knee, ankle, foot pain?

    I’m here in Seattle. Looking for a new PCP, who understand the disease and will make appropriate referrals — orthopedist or rheumatology — to start with . . .

    1. Hi Sue …

      Sorry to hear you even have Sarcoid. : ( With that said … my PCP is Dr Michael Rosenfield of Emerald City Medical Arts in lower Queen Anne here in Seattle 206-281-1616. Let him know I sent you. I had another PCP early on in the Sarcoid diagnosis stage, he didn’t even want to pursue the idea of Sarcoid because I “didn’t fit the profile”. That’s when I changed to Dr Rosenfield. He knew enough then about Sarcoid. But since taking me on … he knows a lot MORE about Sarcoid. ; ) Within a few days of seeing him the first time, we did lung x-rays, then a day later a CT scan of my lungs, and we were well on our way to finding out the truth. I had Sarcoidosis! : /

      All of my other specialist Sarcoid doctors that I have used are based out of UW Med. My Sarcoid specialist is also my pulmonologist, Dr Ganesh Raghu @ UW Med 206-598-4967. He knows more about Sarcoid than any other doctor I’ve been to. He is a specialist in Sarcoid. So when I started having pains in the bones of my hands he consulted with a rheumatologist at UW Med to coordinate my treatment, and fill in the gaps that the rheumatologist may not have known about Sarcoid. It was found that I has cystic lesions in the bones of both my hands, caused by Sarcoid. But they would have never found them with just an x-ray. I had to have a MRI of both my hands. That’s how they found them.

      So my suggestion would be possibly a meeting with Dr Rosenfield first, and maybe with Dr Raghu so he can get to know you and the extent of your Sarcoid. After that Raghu can best help coordinate your Sarcoid care. That’s pretty much what I did.

      Right now (knocking on wood) I have been symptom free for over a year or more, (I stopped counting) except for the cystic lesions in the bones of my hands. There is occasional pain associated with that, but I’m so use to it, it doesn’t “emotionally” bother me as much as it once did.

      Initially I had a slew of disparate symptoms, that if taken separately made doctors scratch their head and just treat the symptom, including 6 months of nausea, pain in my ankles, dizziness, a large purple-ish lesion on my right leg (which I still can see the remnants of even now). When I finally developed two pea size lumps on my forehead and had them removed and biopsied … that was the symptom that tipped the scales and start us on the road to a diagnosis of Sarcoidosis.

      Believe me, I know how difficult it is to get through the diagnosis stage, and even the treatments. But once you have people who are “in the know”, and also become your allies through the whole ordeal, it makes it easier.

      The one thing I’ve learned about Sarcoid is everyone’s case can be so different. My pulmonologist always told me, “Joe, your Sarcoid is mild…” To which I would always answer … “I’d hate to experience what chronic was like!” I know he was trying to put it into perspective … but when it’s YOU going through it … nothing seems MILD.

      If you need any more info, you can always just eMail me directly at ejo@go2jo.com.

      Start with Dr Rosenfield … he will be a huge asset to you finding answers. I’m sure you know there are no “cures” for Sarcoid but getting answers and help to get through your current bout of symptoms will help your mental outlook too.

      Good luck on your journey through this ordeal.

      Joe

  2. You look wired for sound! (Or something.) I was on a Holter monitor last summer because of rapid heartbeat. Turns out the drug I was taking for my blood pressure was making my heart race! Ya can’t win.

    Methotrexate is actually an anti-metabolite. I mean literally a stop-the-metabolism-from-working drug. I hope you don’t have to take that *ever* again! It can cause severe or even fatal liver damage, not to mention a host of other problems (I’ll bet you’ve looked it upâ??I hope you have!). On the other hand, you won’t have psoriasis (it’s used for really really bad cases).

    OK, so I’m late with this comment, so sue me. But I hope you’re doing better!!

    :* :* –A.

    1. @ Adam

      Most times the perceived cure is worse than the disease.

      Oh I certainly did my homework on Methotrexate. Plus we were monitoring my liver every few weeks. The biggest problem was the two-day-long headaches I was getting. And the blurring of my vision. Not very pleasant by any means.

      But after my sleep study, the headaches may have been cause by my apnea. Honestly I’m sick of all of this shit! I’m literally sick & tired of being sick & tired.

      I’ll be seeing my pulmonologist end of April. He’ll either put me on Methotexate again, or Colcochine (gout med), Hydroxychloroquine, or any number of other odd … you would think had nothing to do with Sacroid … kind of drugs. The only thing they have in common is slowing down immune system. That’s all they can do. Oh and throw prednisone at you when my lungs are being affected … like right now.

      I asked my pulmonologist for a three month reprieve from all my drugs. Just to see what my body felt like without them. It’s now four months later … and I’m starting to notice shortness of breath when I’m walking or being mildly exerted.

      It’s all a crap shoot. I never know when it’s coming or if it will subside. I really didn’t think this is what 52 would be like. But that’s life baby! These days though I don’t know that I even have control over the quality of that life.

      Like Phil use to say … control … it’s all an illusion. =: o

      Thanks Phil! :p:::::::::::::::::::::::::

  3. Alright Joe, it’s been a month. How about a new blog posting!!! Get off facebook and get to work. ;)

    I wanna see more pics!

    So how was the birthday week?

  4. Joe

    You look like a real-life outtake from OK Computer in that shot.

    It should be awesome… only it’s fucked cos I didn’t see Dr. Tchock listed as one of your
    docs.

    Hoover

  5. Sure wish you lived just a wee bit closer. We could use some down time over some awesome food. Then again, that would mean we would have to be out there….’cause with one exception there is crap for food around here.

    At some point I want to figure out your logic behind the structure of your blog.

    Alex´s last blog post..Trading a gem

  6. Actually Joe, I think the wires and straps, etc, all combine to give you a very post-modern, steampunk (steampink?), sort of quality. Live it up.

    Sucks to hear that the sarcoid is active again. How’s your diet of late? Able to eat/drink? How active can you be when you’re feeling this bad?

    Alex´s last blog post..Pitchers are up on Etsy

    1. Alex …

      Yes very post-modern, post-apocalyptic, post-middle-aged Six Million Dollar Man exploded having eaten one too many chalupas.

      Yeah … it sucks! Big time. But to say it’s active is another one of those nebulous statements. Yes I know my lung capacity is down … but my body will compensate by creating more red blood cells to carry more oxygen. That’s indicated by the hemoglobin count being higher than normal.

      Yes I have these lesions in the bones of my hands, but there was a period of 6 months there was no pain from using my hands. That’s when I started back at the gym. I was thrilled to death! But a month in, I went to pick up a dumbbell and I felt ‘the twinge’ in my hand. I knew that feeling from before. And sure enough, within a week … I was back to the point where I couldn’t hold things in my hands, or trouble grasping or putting pressure on my fingers. It’s so very frustrating.

      I wanted to take a ceramics class at a local college, to see if my hands could take it … but I think I’d be better off just buying a bag of clay and playing with it on my kitchen table. As much as my blog and scanning and posting my old photos, and regaling folks with those stories … what I can remember … it’s not real, or really enough.

      I am an artisan. I need tactile stimuli and response, with a three dimensional object as a result of my own hands.

      Anywho … glad you stopped by. Glad you took the time to read. Now go look at more Clash photos dude! ;)

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