Just like that a week has flown by. January has closed, and February is off with a speedy start for us. I began a certification program for Reflexology. I should finish in May and begin taking clients in June. That is the most exciting news this week! It was a rather fast paced week and I swear I just blinked and the week flew by.
January 29- Feb 5, 2015
1-29:Hot showers. Good talks with friends, even if they are by text. Laughter at the office. The convenience of laying out my medications for a week at a time, and not having to open every single pill bottle everyday, because that would suck a lot. Evernote. Acceptance.
1-30:Cheese. Coffee. Laughter and good conversation. Accountability. Stars on a crisp cold night. The feeling of accomplishment.
1-31:The hilarious moments in life brought to us by my being on Mirtazapine (a sedative/anxiety medication) and having to get up earlier than originally planned….It caused my quote of the day… “I just need pants.” QT Donuts and coffee. Busy Days go really quick. I’m finished with my first week of homework for Reflexology. Now I’m going to reread my resources I was given this week to make sure I have everything covered. British Comedies. Relaxing evenings.
2-1: I received week 2 of my Reflexology course a day early! There is a lot of material to cover this week so I’m grateful for the extra day. This morning afforded me the luxury of lingering in bed until 8ish. My gratitude posts and the chance they give me each day to look back through my day for moments to be thankful for, even if they are small, and I have to work to find them, I can usually find something to be thankful for. Amusing Super Bowl Commercials. Seriously most of the time it’s the only reason I watch the game. Plans to see a friend tomorrow to catch up.
2-2:catching up with a friend over coffee, laughter, cherry limeade, a pharmacist that is on top of things….yep you guessed it Azathioprine/Imuran is still in short supply. I don’t run out for two more weeks but my pharmacist called this evening to give me the heads up that there may be another issue getting it this month. Sighs. Staying hopeful it will come in before I actually run out. Bedtime is getting close, I’m experiencing a caffeine crash and need sleep quick.
2-3:Days you can slowly ease into. Good therapy this morning. I’m about 90% finished with my homework for the week! I still have to review week 1 and finish reading this week’s resources but I’m mostly done with the actual homework portion. Woohoo!
2-4:Good Customer Services. Folks that remember your name and order upon sight. A more relaxed day, even if it was still busy. I got to speak with my mom via Skype briefly this afternoon. I’m having a rather low energy day so kept it a short convo. Caught up with a couple of friends via phone/text. Homework and reading is finished for the week. Now just reviewing the first two weeks and writing down questions for when I speak with my instructor at the end of Month 1.
2-5: Azathioprine (My immunosuppressant) came in so I am back with all of my prescriptions at one pharmacy! Amusing convos with the pharmacy tech. Getting a couple of things down before heading to Concord. Thankful for Doug and Mellow and all they do and the continued emotional support they offer. Cherry Pepper Relish. My odd sense of humor, and the ability to laugh through the rough patches. Even more appreciative of those that get my sense of humor and laugh along with me.
Tomorrow is the 3 year mark of my dad’s passing. In memory of him I wanted to do something positive. So I decided to gather a few links to help-lines and other information for Suicide prevention. Please if you are considering committing suicide, or know someone who is at risk for committing suicide please reach out to one of these services.
I’m still around, it’s just been a crazy month. Things that happened while I was away that I’ll catch you up on soon:
- 5 year Wedding Anniversary
- Battle with Bronchitis
- Another trip on the INR rollercoaster
- More praise for my amazing PCP and his nurse
- Life happenings of the non-medical variety
- Migraine from hades
- Brave Heart Award Nomination
- Notes from Therapy
I’ll make more regular posts in September, I promise. Hard to believe summer is drawing to a close already isn’t it? I for one am stoked! Autumn is my favorite season so I’m a little excited and counting down the days!
It’s amazing how much time can change things. The leaves on the trees are dark green again. A few of them are starting to turn brown at the edges. The grass is darker green this time of year. The birds are busily gathering seeds and eating out of the feeders I have out for them. It’s hot, the kind of heat that makes you sweat just sitting still. It’s August, in North Carolina. This is our hottest part of our summers August and September. A few more weeks and Autumn will be here.
It’s a time of reflection for me, I’m noticing things this time of the year, that I simply didn’t have the mental capacity to do so last year. It’s nice, but at the same time it makes me sad that I missed out on it last go round. It’s not something I’m going to dwell on, but it is part of the grieving process. I’ve been down this last week. Mainly because I’m teetering on yet another flare, and it couldn’t come at a worse time, well I’m sure it could, but seriously the timing for this one is bad. Saturday is our wedding anniversary. We have plans and I don’t want to be the reason they are put off, or that we have to change them. My INR has been low for two readings in a row and I’m due back Friday for another check. So as I sit here and watch the little grey Titmouse ferry seeds from the feeder to a tree branch nearby to eat later, I’m taken back to last year.
It’s hard not to think back to the earlier days of my illness. It’s hard not to get lost in the fear, the unknown, and before I know it, I’m crying again. Before I know it, I’m a raw ball of emotions. That’s one of the things I find a lot of people do not talk about when it comes to Chronic Illnesses, the emotional toll it takes.
I learned a lot this past year. I learned a lot about the health care system, insurance companies, and pharmaceutical companies. Most of all, I learned a lot about myself and my emotions. In the earlier days, it was pure fear. Now I deal with a lot of anxiety and depression that is left over from the initial fears.
I do not deal well with the unknown. Put me in completely uncharted waters, and I freak out pretty bad. If this makes me a bit of a control freak, so be it. I like to have a little control in my life. This whole being diagnosed with two chronic illnesses thing, has left me feeling powerless, helpless, and at times out of control of my own being.
I did not become an adult that knows how to ask for emotional support. So if I call you and just break down crying, or I start blubbering, or talking really fast, that is my attempt at saying, Please I need you right now. Or if you look over, and I’m just crying silently in the car, it’s because I feel safe being with you. I’m much better at being there for people, than being the person that needs someone. This even affects my relationship with my healthcare providers. I often catch myself feeling guilty over needing to see them so often, or having to call them to ask them questions. Or heaven forbid they need to step in for an impromptu appointment, or call one of my other doctors for a consult, my guilt factor goes through the roof then. I’m constantly having to remind myself that it’s their job, and that I need to let them, do their job. I really suck at being this ‘sick’ person.
I never realized it was possible to grieve for yourself, until I started the process of well self-grieving. It’s not like grieving a person that has passed away. It comes and goes. It hits at the most random moments, and sometimes it’s more paralyzing than anything I’ve ever experienced. Some days I’m okay with this new life I have no choice but to live. Other days, like this past week when I’m having the extra doctor appointments due to my INR being too low and being on flare alert, I’m reminded that my life is never going to be normal again. It’s almost like leading two lives at times. There’s still enough of the old me left that at times things are still the same. Then there are weeks like these where I can’t help but face the music. There’s no timeline on how long a person grieves themselves when they become ill. There’s no one telling me how long it will take before the heartbreak of these weeks to wear off. I just have to keep moving through them. So that’s what I do. Because I know now, that these weeks do end. The good weeks do come. Yes, unfortunately there are more bad weeks ahead, but I can’t focus on those. It is my choice what to do with my energy and I choose to focus on the good weeks.
So While I’m sitting, taking a moment to watch the birds busily go about their day around me and remembering, I’m also reminding myself to look forward. Always find a way to look forward.
This time last year I was in a completely different place. I had just started having the major symptoms that would later to lead to my diagnosis of Antiphospholipid Syndrome and Lupus. To say I was scared, is a vast understatement.
I can pinpoint the day that a lot of this started. You can read about it on my post The Day Life Changed. To summarize what was going on I was having severe dizzy spells, double vision spells, and had started seeing this bright zipping light dart through my vision field. Shortly after this I began having episodes of what later would be diagnosed as transient clots in my eyes. This wouldn’t be for a couple of months though when they clot in my right eye was diagnosed by Dr. B. Around this time I started having severe panic attacks and one of them landed me in the ER. I had developed Splinter Hemorrhages at this time as well, under all of my fingernails. The ER doctor that night dismissed these, and stated that I had PTSD from my miscarriage. He referred me to a PCP and sent me on my way after giving me a Hefty dose of Ativan and a prescription of Xanax.. This PCP also dismissed the splinter hemorrhages so I sought out my childhood PCP and it was he who, essentially saved my life this past year for the second time since I have known him. He took one look at them and knew we were looking at a clotting disorder. I owe Dr. D A Lifetime of Gratitude.
A lot has changed since this time last year. I returned to the care of Dr. D’s for a few months, now I’m no longer a patient of Dr. D’s. See he was 1.5 hours away, which was problematic due to the frequent visits, but more so my insurance that I finally got said I could no longer see him as a PCP. That is how I ended up with Dr. C as a doctor. I’m also pretty thankful for all he has done for me as well. I feel safer, more confident and he helped me build a wonderful team of specialists. That’s just the doctors. I was also diagnosed with APS and Lupus.
I feel a lot closer to my old self. The fatigue, debilitating joint pain, severe dizziness, and constant flu-like feeling I felt last Autumn-first part of Summer has started lifting. I can’t say I feel 100% but I was able to report to Dr. L at my last appointment that I think the Plaquenil and Imuran are working despite the flare I had in June. I just think we need to give Imuran a few more months to reach full impact. Life will still be full of doctor visits, medications, flares, and symptoms, but I think we are heading toward a more sense of normalcy. The simplest day-to-day tasks and being able to complete for my family, brings me so much pleasure.
I feel rather accomplished when I can look back and say, I’ve managed to cook dinner the majority of the week for my household. The small things add up to big accomplishments, my grandpa always told me this when I was younger and it’s something I’ve always believed and carried through my adulthood.
Mentally/Emotionally, I’m in a better place. I still have panic attacks over having to return to the ER or hospital. Truth is they were not beneficial to me in the beginning. Even the night I presented with classic TIA symptoms, they sent me home with an Unspecified headache. It was later that week I was diagnosed with the Branch Retinal Vein Occlusion in my right eye and told I had permanent partial vision loss in that eye. Their fancy test had said I did not have active clots in my system. I guess it wasn’t sensitive enough to pick up microclots.I never want to go back to that hospital again.
Logically, I know should I have to go to the hospital, I have a better shot at adequate treatment now. Between my highly respected specialists, my PCP, and my medical records that are full of notes from everyone, my diagnosis, and how the hospital system that I am more likely to end up at, I know the outcome would likely be better this time around. I also know there is a plan in place should something happen. It doesn’t stop the fear, fear is an automatic response. I’m still trying to train my brain to process the fear better, to shorten the panic attacks, and to utilize CBT more effectively when they hit.
Therapy has done wonders. At my last session we talked about my fears that were based one what happened last year. We started getting to the root of them. Some of the fears are based on the unknown, and uncertainty, and a lot of that has been answered now, I remind myself of that now, and slowly I will release myself of those fears. The fear of the ERs, that will take time to work through. I think that fear deserve a post all of its own.
I feel confident that I’m headed in the right direction. I couldn’t even form words to express my fears this time last year. All I could do is cry. I really thought I was in the process of telling my loved ones goodbye, and that is a fear that will take me a long time to overcome. I’ll get there. I’ve learned a lot about myself through this process already, and I look forward to the lessons I still have to learn. I also look forward to see where I am at in this process in 6 months, and a year from now.
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.