Two Days Worth of Doctors Appointments

Two days worth of doctors appointments and medical related miscellaneous have wiped me out yet I cannot sleep. I know that I need it or I will run myself down. It doesn’t seem like much when you’re healthy but with the way that I’ve been feeling, it was almost too much. Yesterday, February 27th I had my first consult appointment with a Neurologist at 7:00 am. He changed my blood pressure pill (which is somehow supposed to help with the migraine headaches), prescribed me some migraine medication, and ordered an MRI. When I went to Imaging, their next available MRI was in March. I was disappointed yet know that anytime you see a specialist or need to have a procedure or test done, months is the normal wait time. Luckily I knew someone who made a phone call and the tech was willing to see me right then. I was grateful and completed the MRI. Next I went to the clinical lab to complete blood and urine orders for my Primary Care Physician and Nephrologist. From the lab I walked over to Medical Records to pick up my two recent hospitalization records that I requested. It seemed like a long walk as I become easily out of breath lately, sometimes even having to take a breath after a few words when speaking to catch my breath, taking the elevator instead of the stairs, and other things that make me feel “lazy.” I made a few more stops and then off to my last appointment of the day. Something I set up last minute after seeing my appointment schedule the other day, feeling overwhelmed, & thinking about all the paperwork I need to do and organization necessary. The best appointment of all. I treated myself to a two hour massage. My back, body, and spirit desperately needed it. It was awesome for the time that I was  conscious. I fell asleep and at one time woke myself up with what I wasn’t sure was a snort or snore but I didn’t care and fell right back asleep.

Today (February 28th), I had my first consult appointment with a Cardiologist at 9 am. We have some tests planned as well. I will have another Echo done next month and after that appointment they are also going to teach me how to use a device that I will wear for two weeks to monitor my heart. From there we will determine if further treatment is necessary or not as one of the treatments that I am on for my kidneys is the same thing that would be prescribed in one such scenario. At 11:30 am I went to see my Rheumatologist, which was an hour wait. Again nothing new yet never fun. He went over my lab work and told me that since I just started the treatment for my kidneys about three weeks ago, it will take a while to find out if it is working. I asked him for an estimated time frame and he said two months. Two more months of waiting just to see if this is working or if we need to try something else. He clarified a question regarding Plan B. Along with everything else, I would be taking Cellcept in conjunction with Cytoxan and not completely replacing the former with the later. He said I still had a little bit of fluid in my lungs and osteopenia in various places, but other than that, I just have to hold tight, keep seeing my doctors, and do more lab work closer to my follow up visit. The last appointment of the day was at 4 pm with my Nephrologist. My kidney function has improved although not near where I need it to be but I’m happy for the good news. It seems like there will be a lot of waiting. At least five more weeks to see how effective this treatment is. I am on so many different medications right now that I really don’t want to take anymore and can’t wait for the day that I no longer have to take all or any of them.

I plan to tell you about my first hospitalization in December, exactly what’s going on medically with me as far as I understand it, as well as how I’m feeling but one thing at a time. Until next time, remember that there is always something to be grateful for, you just have to direct your focus there. I need to tell myself this often. But it does help when I’m able to do it. It wasn’t always like this for me. I can tell you more about that later but for now I should get some sleep. Tomorrow will be my last appointment for the immediate future and then I return to work on Monday after the weekend. Wish me luck. 🙂

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8 Comments (+add yours?)

  1. tlohuis
    Mar 03, 2014 @ 09:20:45

    I wish you the best of luck on your journey. I suffer from many chronic illnesses and pain, of which my doctors all think are caused from an autoimmune disease, but they can’t figure out which one. I do have a lot of the symptoms for Lupus and I’ve had some lab work that pointed in that direction, but when the lab was repeated the results were normal. I have a high sed rate a lot of the time. I’ve been told I have antiphospholipid syndrome. I know with Lupus there is no real diagnostic test to confirm the disease. I don’t want to have Lupus, but what I do want is a correct diagnosis so I can get the proper treatment and to hopefully stop all these diseases from attacking my organs. How long did it take you to get your diagnosis? Take care.
    Peace,
    Tammy:)

    Reply

    • mkingr
      Mar 04, 2014 @ 20:08:05

      I apologize I’ve been “bad” at checking my email or blog lately but I just got your comment today. What I am doing before responding to your post is doing a bit of research to refresh my mind since it has been so long that I’ve researched all of the specifics. I’ll give you as much information as you need and I can find, I hope it will be sufficient once I am done but you are always welcome to ask me questions for anything. Just reminding you though that I am not a medical professional and I’m doing my research online (taking information from trusted sources like WebMD, etc. as well as several sites to see what they all agree upon. So I can give you these types of answers as well as my own experience (which I’ll get to in this future response) but you should always check with your doctor and/or specialists. Just to let you know, in my experience, some doctors/ specialists are better than others. Not only in their knowledge about such diseases but in the way that they “treat” you. I am referring to their attitudes and whether you feel that they are actually listening to you and trying to comprehend what you are saying instead of cutting you off or assuming what your next words will be; hearing you but being dismissive about what you have to say or you can tell that their mind isn’t really present in this moment and is wandering somewhere else; not answering your questions in full; or getting upset at you for trying to “self-diagnose” (especially when their answer is merely “I don’t know” and it falls back into your lap and you want answers, then that’s what we do). I believe I had mentioned in one of my first posts about my PCP in Las Vegas who got angry because I asked him if I could possibly have gallstones and he refused to even order the ultrasound; which I had another doctor order and later handed my PCP the results asking when I could have surgery to remove the gallstones. In the beginning I went through three different Rheumatologists before I found one that I liked and who wasn’t just dismissing me, his answer to everything was, “It’s probably just the Lupus” (with no explanation, no “answer” to what I could try to get rid of that symptom, nothing). And not to mention that he was always looking at my body rather than me. That’s why I went to a third Rheumatologist while living there. All of my doctors/specialists now are awesome, they all agree on the treatment I am on which makes me feel taken care of and “safer, they all listen to what I have to say and answer my questions. If I don’t understand I ask for more clarification. I love that they give me “After Visit Summaries” so I can read them over later and see information I somehow missed or forgot about. I did have a problem with the first Rheumatologist I had established care with when I moved back home and after two visits and the way he spoke to, interrogated me, and told me I must be confusing a medication that I am fully aware of because I’ve been taking it since day 1 of being diagnosed with another medication. He even asked me several times if he could have my permission to call the two pharmacies I had used in the past (as if he needed proof because apparently to him I was lying. And I gave him permission each & every time he asked). He sounded like he was just going to stop my Plaquenil (Hydroxychloroquine) altogether but then told me to just cut back to 1 tablet a day instead of the 2 I’ve been taking for the last 13 years and then that he was good with seeing me for a follow up in 1 year! Anyhow, make sure you have a great doctor that you feel has your health in mind, that listens to you, takes the time to listen and answer your questions thoroughly. If not find someone else. Are you seeing any specialists besides your PCP? I will go and research now so I can get a response for you by tonight before I go to bed. I also have something to type out for work but you are more important and if I can’t do both, I can do the work stuff later. I’ll be back. 🙂

      Reply

  2. mkingr
    Mar 04, 2014 @ 23:48:54

    Okay, so I got a lot of information that I compiled together but didn’t want this to be a super long reply and it became long enough to be a blog post so I’m going to copy and paste what I typed up under the next posted blog titled “More About Lupus: Symptoms and Tests.” You will find the basics that will lead you to the right resources and I have inserted hyperlinks from where I got this information so you can look it up if you find it of interest or pertinent to you, to shorten the post, and also to credit the appropriate sources. I was also planning to post today (I just need to double check that I didn’t already blog about it) regarding support groups and stuff like that.

    But to answer your question about my diagnosis. I learned from reading about Lupus when I first got it that I was “lucky” compared to some people who go months, years, or even decades before being properly diagnosed or diagnosed with anything at all. I had no clue that anything was wrong with me except for that extreme pain that I was living with for at least three years that was doing the impossible and getting worse. That’s when my PCP not only did a back x-ray for me since I thought that was where my pain was originating and also ordered blood work. My blood work showed a low albumin level in my blood but a high albumin level in my urine which led him to believe that the albumin was being filtered through my kidneys, causing irreversible damage and without treatment (which is to attempt to slow this incurable process down, would eventually lead to a loss in kidney function, kidney failure, death). So I had to do a 24 hour urine test (I believe that’s what the creatinine clearance is) and he was correct so he wrote a referral for me to see a Nephrologist (kidney specialist). In my blood work he also noticed I had what he called a “high Rheumatoid Factor” and he wrote a referral for me to see a Rheumatologist. I didn’t know what that meant. I only knew that my Grandmother had crippling Rheumatoid Arthritis. I was upset because I thought these were “B.S” tests and what I really wanted was for him to do something about my pain, fix me, cut me open already, don’t give me Ibuprofen that didn’t help anyway, but I didn’t want pain pills (a “band aid”), I wanted to be “fixed” and live a pain free life. But something in me convinced myself to follow up with the specialists which lucky for me I did. At that time I was in a flare anyway, my kidney disease was active and I had to start treatment right away. It took a while to control everything but went into remission within 2-3 years and was in remission until at least December of last year when I ended up at the ER and then directly admitted into the hospital even worse off than I ever was in my life.

    I wish you luck in your search and don’t hesitate to ask me questions at any time, it’s no inconvenience to me. My purpose of blogging was a little because I could get my feelings out and talk about a disease that I live with that I can’t really talk about to anyone else because they don’t understand and I have been misunderstood, criticized, and judged in the past. But my main reason for blogging (since I do have a journal I could write this stuff in) was hoping that in some way, I could help someone with their “journey” or experience with this disease, maybe validate their feelings and let them know it’s all “normal” to feel or think like that, showing my readers that they are not as alone as they think they are, maybe even if I share my darkest times and come out of it, maybe I can offer hope and inspiration to someone who felt like I did at one time, that I was going to die and it was going to be within a few more years (which didn’t happen)… As I had no one to turn to, especially in the beginning when I had so many questions and endlessly did web searches, sometimes frustrated that I wasn’t getting the answers that I really wanted and needed. But this will all be part of the post after the post dedicated to you. 🙂 Keep in touch and let me know what you find. If your doctors have “given up” looking, do what you have to do and research, ask questions, etc. Sometimes (like in my case), if I didn’t do certain things like research, read books about it, or find support groups, I would’ve never found out everything that I needed to know back then about Lupus and my kidney disease. Especially if a doctor gave up (like my PCP with my “back pain” which was gallstones that I eventually had removed and never experienced pain like that again), I had to do research and talk to people before finding out that only an Ultrasound could detect it and that was the only imaging test he had not ordered for me and our symptoms sounded exactly the same, our eating habits were very similar, etc. You are your best advocate and for most of us, like me, if the doctor stops trying, I only have myself to rely on to care enough to search for an answer and gather enough information to present to my doctor. Keep records of everything, especially your lab work because as you learn more about what all the tests are for, you can know what to watch for and what it all means. So that’s my 2 cents of the day. Okay, going to do your posting now.

    Reply

  3. tlohuis
    Mar 06, 2014 @ 19:46:06

    You are awesome. Thank you so much for all your time and effort, just for me. I’m about to fall asleep, as I took my pain and sleep meds about an hour ago, but tomorrow I will read back over everything again and reply and answer all your questions. I just can’t even think or see straight at the moment, but once again, thank you so much. You don’t have any idea how much I appreciate everything you are doing for me. You better make sure you get your work done first. Take care. Goodnight.
    Peace,
    Tammy:)

    Reply

    • mkingr
      Mar 06, 2014 @ 20:10:42

      No problem, I want you to get diagnosed so that you can be appropriately treated and for your sanity and peace of mind. I’m glad I have been of some help in this process, I know that we only have limited sources of energy, sometimes not even enough for us to sustain our basic survival (breathing is laborious, waking up more exhausted than when you fell asleep, among every other symptom, pain, sensation you may feel at any given moment in time). Lupus as well as other diseases are like a grab bag of surprises… just not the good kind. 🙂 More like a White Elephant Gift that you want to give away, or the game hot potato, except you wouldn’t wish it on any other human being (unless they were very very bad). 🙂 Just kidding. It’s something I wish someone would’ve helped me with in the beginning. So take care and we’ll try to figure this out and narrow it down and let me know how often you’re seeing your doctors (if you don’t mind) so that I have a clearer picture of everything. I can also give you my personal email account for your privacy. I just don’t want to take a chance that I might accidentally publish it under the posts if you want your information to be private, you know? If you don’t care and think it might help someone else, then let me know and we can continue posting like this. Sleep well and I hope tomorrow is a stellacular day. 🙂

      Reply

  4. tlohuis
    Mar 09, 2014 @ 19:53:19

    Hi there, just wanted to let you know that I am still here and you didn’t waste your time on all your hard work for me. I have been so out of it lately and haven’t been able to come up with a post so I just haven’t been on for a few days. Now it’s late and i need to attempt to sleep, but that’s going to be a problem tonight, I have a feeling. I gained another monster recently and it’s been causing me a lot of distress, as I’m trying to process it all. I have a friend coming in town tomorrow, for a few days, that I haven’t seen since I was 14, so I may not be back on for a few more days, but I will be back and I do appreciate everything. My email address is tlohuis@yahoo.com if you prefer email. It doesn’t matter to me, but if you are going to email me, please let me know of your email address first because I only open email if I know who it’s from. I look forward to talking to you some more in a few days. I hope you are doing “better.” Take care, until then.
    Peace,
    Tammy:)

    Reply

    • mkingr
      Mar 10, 2014 @ 20:33:59

      That’s fine. I understand. I’m just checking my emails now and looking at blogs for a little while. I’m getting sicker and went to the ER today but they sent me home without any answers or medication. I had to ask for an inhaler and stuff for my throat especially because now I’m starting to have difficulty breathing, yet it comes and goes. So by the time I got to the ER, I just had a tight chest and was able to breathe. I don’t understand how so much is happening in the past 6 days of being sick and it slowly progressing but all of my lab work and vitals look “normal.” (Well, you know, “normal” for me). I thought they would at least want to keep me overnight for observation since it always seems to get worse, but no. I guess I’ll blog about it later. Still feeling weak and shaky, and should lay down. Hope you feel better soon as well and have a lot of fun with your friend. I’ll be reading your blog later when I feel a little better. 🙂

      Reply

  5. tlohuis
    Mar 25, 2014 @ 14:09:43

    Hi there. Sorry, I’ve taken so long to get back to you. I’ve been sick as hell myself lately. I know what you mean about going to the ER when you can’t breathe and then you get there and it’s better. You know why that happens? Because the hospital has the best filtration system available so the air in the hospital is so clean, that’s what they told me one time when I took one of my kids when they couldn’t breathe and by the time we got there and got in to be seen, they were doing so much better. I sure hope you are feeling better by now. I got the flu on Jan. 6th and it turned into bronchitis and that took over 2 months, 3 different steroids, and 2 antibiotics to get over it. I was over it for exactly one week and it came back and I’m still struggling with the bronchitis and feeling like shit. I’m not going to the doctor about it because she’ll give me more steroids and I hate them and after taking 3 different kinds and only being well for one week, I’m not taking them again, not for this anyway. I am finally going to make it over to your blog right this minute and I hope my daughter has ink in her printer so I can print it out, otherwise I’ll need to write everything down because my memory is horrible. so here I go, and thanks again for all your hard work. Much appreciated. Take care and I look forward to talking again soon.
    Peace,
    Tammy

    Reply

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