Little Victories

"Success is made of little victories."  What's your little victory today?: Helpful Quotes
(img via Nomadic Lass http://www.girliestgeek.com)

Today provided cause for celebration. Today for the first time since the end of October my INR is back in range!!!! It was a solid 3.3! Today Dr. C said “See you back in a MONTH”! Today I sighed the largest sigh of relief I have sighed in a long time, simply because of a test result. This may also mean we have figured out the new dose of warfarin I will be on thanks to the manufacturer changes and hopefully when we recheck it in a month that will prove us right.

While at his office he also repeated the freezing of my wart that is hanging out on my right thumb. First time he froze it he used the canister of Liquid Nitrogen. This time it was old-school style with LN in a Styrofoam cup and a Q Tip applicator.  I don’t recall my skin sizzling during the first freezing. Was rather fascinating, or at least it was to me, but I’m a bit of an oddball when it comes to medical procedures. I do work on the fringe of the alternative medical field and therapeutic realm so I guess it isn’t all that weird. After the area around the wart heals from the LN treatment for a couple days I will continue with the adjunct Duct Tape Treatment that Dr C had recommended after the first freezing.

Talked to him about my last appointment with my Rheumy, the angry email that resulted due to the dreaded ‘roid’ rage that I sent my Rheumy and the fact that even though today is the last day of my Prednisone taper, I am not fully over the flare symptoms. So he recommended that that I email or call Dr. L and ask his opinion on extending my Prednisone or just relying on my at home treatments for my symptoms. I emailed, I’m still waiting on a response from Dr. L.

At least we had a small victory today, I rejoice in the small things and celebrate those every chance I get.

-N

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6th Floor Office Appointment Notes.

Into the parking garage to park. Down one elevator, up the next. The familiar pattern leads us to my Rheumatologists one office and to the doctor that I have slowly realized everyone else defers decisions to and is more concerned with. The weirdest adjustment I’m dealing with right now is that since getting a Rheumatologist, everyone wants to know what he is saying, what his decisions on everything is.They are much more concerned with who my Rheumatologist is. It seems like an overwhelming amount of power of my care lies with this individual. This in turn is requiring me to learn to put a great deal of trust into him. Slowly I’m getting there. After being “burned” by a few doctors in the beginning of getting sick,  I find it harder to blindly trust doctors these days so it takes me a while. Each appointment though I get closer to being comfortable with the amount of trust I must have in Dr. L.

Last week I had my 1st Rheumatology Appointment of 2015. Overall it was a positive appointment, Dr. L was in a great mood and we covered a lot of the concerns I had with my conditions and medications. My Rheumatology appointments tend to cause me more than the other doctor appointments but this one went smoothly and other than the fact that I am still waiting on pending lab results, which has me scratching my head a little bit as they are marked as received. Hopefully soon I will be able to see the results as well.

I went over notes from my last flare with him that happened back in Nov. and how Dr. C and I handled it, he was okay with how things played out. If I should experience another once before my appointment in May I am to try get into see him. If not I’m to document it with pictures and such as best I can. I told him about the rib pain I experience during flares and he made sure it wasn’t my liver or gallbladder (I tried to tell him I was sure it wasn’t). He wanted to be sure. I also experience a cyclic flare in my joint pain that coincides with my menstrual cycle so he wants me to try taking Naproxen beginning mid cycle (or thereabouts) to stay in front of the pain to see if that helps prevent it from getting too bad. We went through our usual sequence of the joint squishing and I was happy to be able to tell him I was in less pain than previous appointments.

I talked to him about my desires to walk in the Lupus Walk in May and he told me that would be great, as long as I remembered to wear my sunscreen. Which made me realize why they hold the event in the evenings… D’oh!!! Sometimes my brain takes a little time to process. haha!

I’m pretty sure he was on a mission to see how many times he could say Lupus during my appointment. He issued a reminder that my INR was better off being kept 3-4 and that he would send a note to Dr. C stating his thoughts and notes from this appointment. Fair enough. Hopefully those notes will reach Dr. C before my Follow up with him next week. That would be helpful.

We discussed the fact that azathioprine was a little difficult to refill last month and that the pharmacist said I may have to switch medications due to the shortage. He didn’t seem a fan of that thought process, and neither did I. So he called me in more refills of it and the plan for now is to continue on that path unless we heed to go another direction. The medication is working well and I am for the most part stable. That is something to be happy about.

My next appointment is an 8am appointment in early May. Hopefully he will be in a good mood then as well! He is rather hilarious when he is in a good mood!

Good News from the 6th Floor Office

Last Monday, October 20th,  I had my October Follow-Up with my Rheumatologist, Dr. L. It was a late morning appointment. I recalled vividly the checkout lady cheerfully telling me that it was ‘the best time’ to have an appointment at their office. I have to say I disagree with that sentiment. Getting into the parking deck was anxiety inducing. The two cars in front of us, seemed to be lost and just stopped, dead in their tracks causing a back up at the entrance. Have I mentioned I’m not a fan of parking decks/garages to begin with? Yea, I’m not. We managed to get around them and went a different direction from the lost ones to find a parking space. Then we headed to the first elevator. Down to the first floor lobby of the medical plaza, that is also connected to a large hospital, we made our way. Then across the lobby and to the second set of elevators so  we could go up to the sixth floor waiting room.

I was excited and rather anxious. It takes me a while to get use to a new doctor and get comfortable. Dr. L also is sort of the one that calls the shots as far as my treatments and such goes. He is also the one that runs the bigger, more in-depth, and as you can probably guess scarier tests at this point. Granted most of the time they come back as we expect them to and there are fewer surprises at this point than there were a few months ago, but still Rheumatology appointments are a bit stressful still. Not to mention there is the whole mess of having my joints squeezed and pressed on, which sometimes is quiet painful and uncomfortable.

A different nurse processed me this time. She seemed new and I hadn’t seen her before on any of my prior visits. While going over my medications she struggled pronouncing the two medications Dr. L prescribed to me AzaTHIOprine (Imuran) and Hydroxychloroquine (Plaquenil). I feel if you are going to be a nurse at a Rheumatologist’s office, you should quickly learn the medications you are going to be encountering. Those two are fairly common and I know Dr. L prescribes them frequently, as he told me they are two that he relies on a lot. Other than that minor detail, I liked her a lot. She was personable, considerate, and listened to what I said. She also made notes of everything I said and not just parts of what I had to say for Dr. L. After she was finished with her part of the appointment she stepped out.

After a short wait Dr. L came in and we went over how the last 3 months had been. He asked if I had gotten my flu shot yet, and I told him yes and provided him with the date. We talked about my last flare, triggers, and what I was doing to keep my symptoms at bay. He was pleased to hear that things were improving and we both agreed that there wasn’t a need to add any new medications or to increase the dosage of either medication. Which with Imuran, we really can’t because of how I tested as a metabolizer of it back before we started me on that medication. I’m pretty much at my high dose already. It was a short appointment and he sent me to the lab for some routine tests to make sure my body was tolerating Imuran properly still.

Before going I asked him about Antiphospholipid Antibodies and their significance. The first time I tested positive for APS I tested positive for Anticardiolipin Antibodies, the second test  I tested negative for Anticardiolipin antibodies but positive for antibodies against Beta 2 Glycoprotein. I wanted to know if that meant my clotting risk was lower, which was what my Hematologist has indicated. Dr. L told me that wasn’t the case, that B2Gl was a subset of Anticardiolipin and both were antibodies against phospholipids which put me at an increased risk for blood clots. I relayed that information to Dr. C, my PCP the next day at my routine INR check.

Thursday I received an email from Dr. L and it was one of the best emails I have received in a while. Not only is my body tolerating Imuran perfectly fine, my kidney function has returned to normal! For the first time in over a year my kidneys are functioning 100% normal! Thank goodness! I can only assume that the combination of Plaquenil and Imuran are doing the trick at keeping my immune system from attacking them or whatever was going on that had my creatinine elevated for several months.

I see Dr. L again in January, a few days after my 31st birthday. I’ll have a new list of questions for him by then I’m sure. For now though I’m just really happy with where things are with my treatment.

Doctor with the Google Glasses!

Today I had a follow-up appointment with my Rheumatologist.  Some of you may remember my  post about my appointment with  Dr. L  Return To The 6th Floor Office back in May. To summarize briefly in that appointment we talked about the frustrations of insurance companies, he asked me to see a dermatologist to have my skin biopsied to confirm my diagnosis of Lupus that way.

I did, see a Dermatologist by the way,  on Friday. It was a mostly uneventful appointment, except for the prescription of a very expensive steroid lotion I am to use the next time my rashes appear. When I say very expensive, retail value is $415, Thank goodness I have insurance that allowed me to bring it home for $5, otherwise it would have stayed at the pharmacy. I am also to Dr. W  immediately so they can get me in for biopsies. He did review the pictures I keep of my rashes and he concurred, they are lupus rashes.

Now back to today’s appointment. To say I was nervous about today’s appointment is an understatement. It started Thursday. I had received a call on Thursday from someone in his front office stating they no longer accepted my insurance and that my appointment was canceled. After a very panicked 10 minutes the same woman called back saying she had made a mistake and that she had added my appointment back to the schedule.

When we got to the office this afternoon I mentioned this to the check in lady, and she just laughed it off. I had already decided I was going to mention it to my doctor so I didn’t press the issue.

After a short wait I was called back by my doctor’s awesome nurse. Aside from the front office staff, the staff at his office is plain awesome. She checked my vitals, reviewed my meds. Then she looks at me and says “Dr. L will look a little different when he comes in today.” “Oh?” I questioned. “He will be wearing google glasses, here you can read about them while you wait for him.” she handed me a flyer excitedly and then exited the room. I handed it to Doug so he could read it while I   filled out this little form I have to fill out at each appointment about my pain level, how it has impacted me the past week, and how all parts of my illness have impacted me. Then I read it. They are implementing them to help decrease the time their doctors have to spend behind computers and to increase the time they get to spend with their patients. Basically there is a small camera and microphone in the google glasses and they transmit information to the doctor’s assistant who can then enter the information. The assistant can also feed information to the doctor during appointments that helps them to better assist the patient without the doctor having to dig through files and the computer, or having to leave the room to research. They haven’t fully integrated the system yet, but it sounds pretty snazzy.

Dr. L came in and we had our usual appointment and I told him about my sun-induced flare in June, we talked about increasing my dose of Imuran briefly but decided not to. He then did the Jointman exam, which involves him squishing my joints and then going to the diagram on the computer and marking which ones are tender and/or swollen. After that we talked about other aspects of my illnesses. He then told me what labs he was ordering for the day, just general lab work today, and that he would see me back in 3 months.

Before we parted, I told him what had happened with the phone call. As you can imagine he was not happy. He listened, said that was unacceptable, and that there was not an issue with my insurance marked in my file. He then brought in the manager of the department the issue had originated from, it was discussed, and it will be handled. The lady I spoke with today was very apologetic, She assured me that my insurance was definitely accepted at their office, and they had a great contract with them so she had no idea what they person who called me was thinking. She also said that is not how things were handled when there were insurance issues either. That if one ever arises I was always given the option to remain a self pay patient, and that I would not just be dropped as a patient as this woman had tried to do.

All in all this appointment definitely eased my mind in a lot of ways. I know I’m in good hands, and it let me know that Dr. L will stand up for me when there is an issue. There’s a lot to be said for a doctor that is willing to do this. It can be rare to find that quality these days. My next appointment is at the end of October with him. Maybe I can talk him into letting me wear the Google Glasses next time!

 

The Eyes Have It

Thursday I had my 6 month follow-up with Dr. B, my Ophthalmologist. He is the longest standing member on my team and was the first to mention APS back last Oct. when I first met him, when I first had the Occlusion in my right eye. This appointment was a long one, most of my eye appointments are. They range anywhere from 2-3 hours and I get shuffled from various rooms to do different parts of the exam before actually seeing him briefly for his part of the appointment.

This appointment, something new was added, because of one of my medications. I’m on Hydroxychloroquine, the generic of Plaquenil. This medication is commonly used to treat autoimmune conditions such as Lupus and APS. It is an antimalarial and while it is normally tolerated very well, it can in some rare cases cause damage to the retinas in some patients. Therefore, it is important to get visual field testing done regularly to make sure this isn’t occurring. Due to the lower doses that are prescribed nowadays this is less of a concern and I’m on 200mg a day so Dr. B said he wasn’t concerned at all really, so I’ll only have to get the test done every year for a while.

Here’s how the appointment went. I checked in, and waited for them to call me back for the first part. Eventually the first nurse came and got me. She took my vitals, updated my medications list, ordered the tests that needed to be done for the day, and did the vision acuity test. She then numbed my eyes and did the pressure test to make sure I didn’t have glaucoma. She then escorted me back to the waiting room to wait for the next part. She didn’t dilate my eyes at this point since I needed to do the visual field test. I should mention I absolutely hate how the numbing drops make my eyes feel. It’s just such an odd sensation! Not to mention they turn them yellow!

After a short wait the next nurse/tech came and got me and took me to a different room to take my retinal scans, I’ve had this done since my first appointment. Basically I put my chin on this little rest and I look into this big machine at this asterisk with one eye and focus on it and I can’t blink while they scan my retina. Then I have to do the same thing with the other eye with my chin resting on the other side of the rest. After this part she handed me off the next  tech.

This is where the new part came in I had never done before. She had me sit at yet another set and stare at a sailboat while she measured my eyes. Then we were off to another room to do the visual field test. This is the test I will have to have yearly from here on out. It consisted of me going into this tiny room. The Tech entered in some information into a computer that was hooked to a machine. It was squared, but had a hollow concave area where I was to stare into. There as a place to rest my chin after I placed an eye patch over my left eye. She handed me a controller and explained that every time I saw a flashing light I was to press the button on the controller. I settled into the chin rest and immediately felt claustrophobic. I have no idea why, it wasn’t like my head was actually in the concave area but I felt surrounded. She told me to stare at the four dots that were illuminating faintly in the lower middle area and to make sure I blinked normally while the lights flickered around. She then began the test. After several seconds the 4 lights went away and one brighter focal light appeared and she said to continue staring at it and to continue marking the flickering lights with a press of the controller. This went on for what seemed like an eternity. While this was going on her and Doug talked. I kept thinking, gosh this test is lasting forever! Kept wondering, how people with ADHD make it through the test. Finally the test was over. She returned to the computer screen and in a mildly panicked voice goes ‘Was that the eye with the occlusion?’ and quietly answered ‘Yes?’ She breathed heavily and in the same breath said, ‘Good! because there’s this whole corner where you saw nothing, and it clearly mapped where an occlusion would be.’ Uhh geez thanks lady! We then switched eyes and did the other one. There was no areas of blindness in the other eye, thank goodness! She then numbed my eyes again, put the dilating drops in and sent me back out into the bright waiting room to wait for them to dilate.

Several minutes later Dr. B’s assistant came and called me back for his part of my appointment. His room is all the way back in the right corner of the place. It’s a large room, with the exam chair and equipment, a shelf, a chair for a friend, there’s the place where his assistant sits, there’s also a shelf across the room where this model of an eyeball sits. I only remember this thing because at my first appointment he grabbed that thing to try to explain to me what happens when someone has a stroke in their eye. Now every time I’m there I see that thing and I smile. It symbolizes the beginning of the road to answers. It symbolizes the beginning of not being so afraid, of knowing I wasn’t insane after all, even though I had people telling me it was all in my head at the time, I listened to myself, to my body, I kept pushing for answers because I knew something was wrong. I was right. It symbolizes the beginning of a relationship with a doctor that has really gone out of his way to help me get to where I am today.

After waiting for a few minutes in this room, Dr. B and his assistant came back in. Dr. B is tall, lanky, older and dignified. He’s someone who enters a room and you just know everything is going to be okay. He shook my hand and asked me how I was doing healthwise. I updated him on everything and he then took a look in my eyes with all the special tools he has. He made comments to his assistant while doing so. Then after he was done told me that my occlusion was healed. The blind spot will always be there, there’s nothing that can be done about that, but the injury itself is healed properly. He was extremely pleased with how well it had healed. We talked about Plaquenil, and Imuran. We also talked about Lupus, and he dictated a note to Dr. L, my Rheumy. It went something like ‘This is a note for Andy L. I’m here with our patient, I’m recommending she come back in 1 year for her next check, she is doing well on Plaquenil and Imuran and I recommend the doses stay the same. I also recommended she start artificial tears to help with the ocular sicca you sited during your evaluation of our mutual patient. Patient is doing much better than when she first came under my care in Oct. Her BRAO has healed and I will see her in 1 year for next vision check.’ This part of the appointment wrapped up with him ordering pictures of my right eye and I chatted with his assistant for a few. She asked me if Dr. L had ever mentioned Undifferentiated Connective Tissue Disease and I told her I had seen it coded on my paperwork once, and since then it had just been called ‘lupus-like’ and things like that. That as far as I was concerned given my family history, that I have APS and everything else, it was Lupus. She smiled and laughed a little. She then went on to say she sees one of Dr. L’s colleagues and is being treated for UCTD as well but is only on Plaquenil. I constantly run into people who either go to Dr. L or to someone in his office. Seriously it happens at least once a week it seems. It’s crazy how frequent it happens. After the small chat I thanked her for her help in all this, she’s been there from the beginning too, so she knows how frightened I was that first day I sat in that chair. So she could see the difference as well. Then Doug and I made our way to the waiting room to wait for the final stop for the appointment.

A little while later the last tech came and got me. This is by far my least favorite part of the appointment. You take already dilated and light-sensitive eyes, and then you take pictures of them. This involves bright flashes of light and staring at a green light to get the position of the eye right for the pictures. It is not fun, and for several minutes afterwards I can not really see out of my right eye. The pictures are cool though. At some point I want to get copies of all the pictures that have been taken of my eye since October.

After this stop it was time to check out and I scheduled my appointment with him for July 2, 2015. That’s the next time I’ll see him, unless something new occurs between now and then that requires me to make an appointment. Oh… and the good news is…. even with the blind spot… my vision is still 20/20!

On The Road To A Happier Place

I see a therapist. I call her AL. I started seeing her at the end of April. Chronic Illnesses or at least for me, awoke a lot of fears and anxieties that I didn’t realize I had. Or maybe I did and they just became overwhelming as I became sick, became sick. Damn-it that still seems so weird to me. Became sick, I don’t get to get better though. I am a Chronically Ill person. That has led to an insanely intense fear of becoming a burden to my loved ones. Now that I have a couple of chronic illnesses that have unpredictable courses, this fear overwhelms me at times.

First of all, Antiphospholipid Syndrome, is an autoimmune blood clotting disorder, puts me at a higher risk for strokes, heart attacks, DVTs, PEs, and other clotting events. I have already had several transient clotting events, as well as a clot that lodged in one of my Retinal Veins and led to a small area of blindness in my right eye. This has left me fearful of any change to my vision, as I can never be sure if it’s the start of another clotting event, a side effect of a medication, or even migraine related at first. This has been a major source of anxiety. I can tell you now, the mere thought of more vision loss, causes an instant panic to run through me. Blindness would definitely cause me to be more dependent upon my loved ones, and thus more of a burden. So far my clotting events have all been micro-clots. It is my hope and the hope of my doctors that we can stop any more events from happening, and especially prevent any large clotting events from happening. I still live in fear of the next one happening though. I’m not sure that fear will ever go away, regardless of the amount of therapy I undergo.

Now let’s talk about this other diagnosis that is out there looming. Lupus, another autoimmune condition, with no predictable course. Even my diagnosis is going on an unpredictable course. I don’t at this time have the positive labs to ‘support’ a ‘definite diagnosis’ of Lupus as my Rheumatologist says. So instead I am being treated for a ‘Lupus-like Illness’ because my symptoms are ‘highly suggestive of a ‘Lupus-like illness’ (do you think perhaps….because it IS LUPUS????). Another phrase that has been thrown in the mix is Undifferentiated Connective Tissue Disease. Which is sometimes a catch-all used by doctors when they want to say ‘hey we get it, something is wrong, but we can’t make a definite diagnosis at this time so we are going to label you with UCTD and treat you for Lupus without calling it that at this time’. I know my family history, I know my symptoms. I know what I’ve read, and what the Lupus Foundation of America’s website and many other resources have said. This is Lupus, seronegative at this time, but nonetheless, this is Lupus. It will eventually be supported with Labs, I just have to get sicker first, yep that’s how it seems to me. I’m not sick enough yet. Of course in July I’ll see a Dermatologist so we can see if we can track down the elusive antibodies that way to see if we can at that time ‘definitively diagnose’ this as Lupus. As I told my PCP, the Rheumy can call it what he wants, I know what it is, as long as he continues to treat me, I really do not care, other than being frustrated over how things are playing out. I also know, eventually the labs will be positive, eventually he will get what he needs to definitively diagnose me (unless he retires first), see….. I can wait this out, I know these things take time, I’m doing my best not to go anywhere, despite my fears of the alternative. Lupus or UCTD, whatever you want to call it at the moment, has an unpredictable path. It can attack any organ, at anytime. It can lead to disability at any time, and it can lead to more dependency upon loved ones.

Both of these conditions combined have been caused me a great deal of fear. I know, I know. You shouldn’t stress over what we don’t know about the future. What we know today could all change tomorrow. That’s part of the problem. My entire life changed in a matter of a few weeks. I’ve just recently started getting things back on a track that makes somewhat of sense with how I saw my life panning out. Of course there have been changes implemented to the original plan. I had always seen myself as one that would end up in the caregiver role for my family, to now be in the position of the one that may very well be on the receiving end of that relationship, it has been a bit of shift in how things are viewed. It scares me. I’m not good at being ‘sick’. I never was when it came to acute illnesses, and I’m not sure how I’m suppose to do this long-term.

This past week was a prime example, I had a flare, so on top of feeling physically ill, I mentally/emotionally beat myself up because I felt like an inconvenience/burden. Al and I talked about this at my appointment today. I told her that Friday alone I managed to inconvenience two doctors because of all of this. She stopped me, and reminded me, that it was sort of their job to do these sorts of things. We talked about that aspect of this and I agreed, but still I felt guilty. Then I mentioned how much of a burden I was for my husband and best friend and that I feared it was just going to get worse as time went on, and what if I couldn’t pay them back or show my gratitude enough. We talked through these issues, and by the end of the appointment I had gained better ways of confronting these specific cognitive distortions. Cognitive Behavioral Therapy has been very beneficial so far for me. I can’t say it has fixed everything, it probably never will, but it has given me another tool with how to combat the thoughts I struggle with on an almost daily basis. This alone should help me with my fears, anxieties, and the depression I face while dealing with my illnesses. It’s a work in progress, it will be for some time to come, but I’m on the road to a happier place.

And We Are In Range Again!

This weekend, I avoided going out in the sun, took my meds, took it easy, at least somewhat, I’m never good at the taking it easy part. I took 30 mg of Prednisone From Friday until today. I started feeling a little better yesterday, and somewhat better today. I decided to take my 30 mg dose this morning, then I went and checked in with Dr. C. Thankfully this appointment showed improvements. My INR is back in range, it’s 3.5. That means I can resume my normal dosing schedule of Warfarin for the rest of this week, unless I start getting ‘the bad’ headaches. Some warning signs of low INR for me is really bad headaches, silent migraines, and splinter hemorrhages under my fingernails. Those things all show me I need to go to the doctor and get my INR checked, even if I’m not due for a check.

I was so happy to see 3.5 on the INR test machine this morning. I’m pretty sure I would have cried if it had still been low. Cindy wrote down my INR, made notes in my chart on the computer as we chatted and then she left the room. Dr. C came in a little while later and was happy to see my INR had returned to range. We discussed if I was comfortable returning to my regular dosing schedule and I said I was. He then asked if I was feeling better, and I told him a good bit but still not completely. He said he wanted me to stay on Prednisone a couple of days longer so-called me in another prescription for them. He said it would hopefully knock this flare the rest of the way out. He asked when I wanted to come back and get my INR checked and I said in a week since I was on Prednisone, and that med is known to cause spikes in INRs. He the told me that either Friday or Monday would be okay and that Cindy would come back and schedule that appointment with me since the majority of my INR checks will be through her with him calling me later in the day, unless there’s a drastic out of range reading like we were getting last week. I told him how much I appreciated him stepping in Friday when the reading came back so low, and he said not a problem and that the appointment went exactly how he was hoping the set up would work. He’s hoping if the majority of my INR readings are with his nurse we can keep my insurance company from getting fussy later on down the line. He will still want to see me once a month to check in. He then explained that if I ever need to talk to him or if anything happens like it did on Friday then Cindy will come get him and He will either step in at that time or I can wait in the waiting room until he can see me. At least there is a concrete plan of action. That makes me feel more at ease.

Now let’s hoping a day or two longer and I can be done with Prednisone. It causes my usually stable with treatment BP to shoot up. This morning it was something like 144/92 and my pulse was 111. That’s with taking my daily dose of Lisinopril. So needless to say I can only do short treatments with Prednisone. Besides, it causes too many other issues if you stay on it long-term. Wonder drug that it is, it still does some pretty nasty things to a person’s body over time.

When Cindy came back to schedule we decided to do my next check on Friday because she is off next week and I would prefer to deal with her since she is most familiar with me and my issues. It gets old having to explain everything to new nurses, and doctors. So if I can continue dealing with primarily her and Dr. C this will cut down on my stress level as well. So I’ll head back to see her at 9am Friday to see if my INR is still behaving.

Coming up this week in the list of appointments:

  • Tomorrow: Therapy….It’s going to be an interesting appointment. This is the first session I’ve had with her during a flare. Will be interesting to see how discussions go when we have an actual flare to discuss instead of the anticipation of one, or the aftereffects of one to discuss.
  • Thursday: Ophthalmology appointment. Dr. B 6 month Follow up, plus a check to make sure Plaquenil isn’t building up in my Retinas.
  • Friday: INR Check with Cindy.

Full week ahead still plus….all of the other life stuff that I need to accomplish. Yep folks, it’s going to be another busy one!