Okay…this is probably going to make me look insane to some, but that’s okay, because right now I’m feeling a bit insane.  For those who don’t know, I have a blood clotting disorder called Antiphospholipid Syndrome, where my blood clots too much, there is no cure, I must take a blood thinner called Coumadin everyday for the rest of my life to keep my blood thin.  I go to a clinic about once month or more often to have my levels checked, for the last month my blood is staying too thick, even when they increase my Coumadin, so I have been going weekly.  This costs me money out of pocket.  Our health insurance isn’t great, so I must pay out of pocket for about half of the charge of these visits.  But the cost isn’t really the main topic of this entry.

The main topic is fear.  It’s the major fear I have that I am going to die of a blood clot.  I have had this fear of course since being diagnosed.  But the fear has grown exponentially lately, and it’s gone into hyper over-drive since I broke my ankle/foot.  Because being immobile will increase your risk for bloodclots for healthy people, much less for me.  Last night my leg, the one with the broken ankle, started hurting badly…in the calf area.  So I started freaking out internally.  I tried to flex my leg and foot muscles as much as I could, to get blood pumping.  Then I began having left-sided chest pain…so of course in my head I became panicked that a clot had travelled to my lung!  But I was alone, Jim at work, Jess in bed.  Now I could’ve woke her up, I could have called 911 or my doctor…BUT, a huge part of me thought, “NO! Don’t run up MORE medical bills! It is more than likely NOT a clot.  It’s more than likely muscle spasms from the injury.”  I checked the back of my calf, it was not red or warm, which would be indicative of a clot.  I was not short of breath, just having chest pain.  So, I tried to calm myself and I got out my papers, that I keep bedside in the event of a health emergency, that describes all my health problems and the medications I take.  I keep it in my purse and at bedside in case I can’t talk to explain my issues.

At any rate, I chewed a baby aspirin, which I really shouldn’t do…because it’s just as dangerous to allow your blood to get too THIN…you can just spontaneously start to bleed internally or have an aneurysm.  But I eventually fell asleep.  When I got up this morning the same leg was still hurting…in the calf, but feels like it goes up the back of my thigh also.  Just occassional left sided chest pains, no shortness of breath. I told my husband about it all.  He of course doesn’t know what to say.  Neither of us want more damn medical bills, especially if it’s for something that isn’t an issue!  I remembered that I still had some compression stockings from one of my hospital stays…they help keep circulation in your legs.  So I had him get one out and I put it on my bad leg.  He’s at work now.  I’m alone.  My leg is throbbing like crazy from the top of my foot up to my hip.  I am pretty sure its probably all due to the foot injury.  I’m trying not to over react or panic, but it’s hard. Really hard.

I can’t seem to make this extreme fear of having a blood clot go way.  I go to the clinic again Friday and I’m gonna talk to them about it.  I am also going to look for a therapist I can go to so I can talk freely without feeling I am being a burden to everyone I know.  I have all these fears inside me, that I have usually been able to keep down, but they are really starting to get to me.  How to keep myself from automatically thinking every leg or chest pain is a clot….cuz I think I just send myself into a panic, and cause the symptoms to get worse.  Or, maybe right now as I sit here typing this, I have a huge damn clot in my leg that I should be going to the hospital for!  But…because we are poor and have shitty health insurance, I hesitate to go.  That’s crazy.  But this type of situation is going on in so many households across the country is mind boggling!

I wish I had a 24 hour nurse or doctor with me at all times! lol….I told Jim today he should just put my useless ass in a nursing home and forget about me and get on with his life.  This crap is so unfair to him and my family.  I’m only 43.  I should be able to be taking care of everyone else, going out on the town, going on walks, whatever.  Not being deadweight.  But anyway, I just wanted to get it out there, just say it outloud to the world…I AM AFRAID! I am living in constant fear of this damn blood disease!  It didn’t really send me over the edge until this injury.  I’m trying to breathe thru it.  Trying to stay rational.  Trying to have other explanations for the symptoms.  But I can’t help but thinking, what if I am right?  What if it is a blood clot and I’m ignoring it and then will die from something that possibly could have been taken care of at a hospital?  What if?  What if I’m wrong and I go to the hospital and wrack up another $1,000 in medical bills and it’s nothing?  What if?

So I am hoping I can just rid my fear by getting this out of my head.  Come to a realization that worrying about this so much will not help me at all.  What will be will be.  I will die from whatever I’m supposed to die from… when the Lord has decided it’s time for me to go.  So I need to just chill.  Stop fretting like a little old lady.  Just breathe.  Keep my circulation goin in my legs.  Be mindful of the symptoms, but not go into full panic mode and CAUSE false symptoms.  So right now, that’s my plan…but I gotta say, my foot/leg is just throbbing/cramping like crazy.  My pain meds aren’t helping.  I’m thinkin it maybe even hurts more since I put on that stocking.  Maybe my acebandage is too tight.  I will take off the boot, take off the bandage, take off the stocking and redo everything, then put it all back on and see how it feels…after I recover from the exhaustion of doing all of that! :/

With all my illnesses and pain issues, it’s understandable that I am afraid.  I’m afraid of death.  Now I have said and or thought at times that I did just want to die.  To escape this pain and misery.  But at the same time I want to live, because I want to be here for my family….in a selfish way I guess…I know they would survive without me…my kids are both strong…they would survive…but I don’t want them to have to.  I don’t want them to go through that.  I’m selfish in that I want to be here with them.  I want to watch their lives unfold.  I want to be here for grandchildren.  I want to be here in the world and enjoy things I can enjoy.  I guess I just need to come to terms with death.  If it’s my time, it’s my time.  Nothing I can do about it, right?  What will be will be.  I would just hate for it to be because I was too stupid or cheap to go to the hospital…it’s a shitty situation.

I hate feeling like this crazy person.  I have to change my thinking process.  I hate fear.  I consider myself a strong and courageous person…but this fear of bloodclots is getting the best of me.  Even after typing all of this, my leg throbbing and occassional chest pains…I’m indecisive.  No shortness of breath.  Leg not red or warm.  Gonna loosin up the leg gear, and see how it feels from there.  Thanks for reading the rant of a crazed woman! 😉


8 thoughts on “Fear

  1. Tammy…..first of all, you are not crazy. Yes, your concerns make sense and it is possible that you could have issues with blood clots, especially being laid up with the ankle. The most you can do is watch it and if the area becomes red or hot….then screw the money, head to the ER. If the chest pains get really bad…..go. Now….after saying all that, I will say this. When we are laid up and unable to do normal things to occupy ourselves, our minds go into overdrive. I am not saying that you are imagining this…you know me too well to think that I would ever say that. But I do know that my anxiety level shoots up alot higher when I am stuck in the house, alone for about 12 hours a day with no one to talk to and no one to interact with other than my FB friends and my cats. As a matter of fact, since this low back injury, I have begun having right ovary pain, strong strong ovary pain and I have endometriosis cysts on my ovaries. My gyne said that with menopause, they should shrink, thus less chance that they could become cancerous. Well….I’ve been in menopause for about 2 years and now I am feeling this strong pain. What am I thinking it is?? CANCER. It is possible that it is referred pain from my back because it would be in very close proximity to where my low back pain is, so that is what I am going with for now. But I am keeping an eye on it and if it doesn’t go away I will have to take my sorry ass into the gynecologist and have him do a sonogram, all the while my back is killing me. SHIT! So I just want you to know, that when you have one serious injury, other things can come along and make you THINK that it can be a life threatening issue when it likely is not. Again, I am not saying that your fear of a blood clot is unfounded. You need to keep a close watch on this calf pain and even call your doc before Friday if you think you need to talk to someone about it. I just wanted you to know that I also am experiencing fear for something that I am feeling too, and whether it is related to my back pain, who knows. I will definitely mention it to my doc when I see him, or when I talk to the nurse about setting up an MRI. I hope that you are okay and that whatever is going on is NOT a clot. I know with the way things go, you almost expect the worst, because the worst keeps happening. Try to breathe deep breaths and try not to freak out. If this message upsets you please please forgive me….it is not my intention. I probably should just delete it, because I don’t want you to think I don’t believe that your fear is justified. I DO….I just don’t want you to live in fear. I think you should call someone, a nurse, an ER department and speak to a nurse there, or even a pharmacist. Maybe they can give you some input and help you determine what you should do. I love you Tammy girl, and I hate that you are dealing with this anxiety. I know a blood clot is a very real risk for you but I am praying that this calf pain is just maybe a muscle spasm or something simple and benign. Keep me informed. xoxoxoxo

    • thanks julz! no way would i get mad! its just wat i needed to hear. its not hurting as bad this evening and no chest pain since I wrote this entry. jess got home and we have been watching shows and stuff…I’m sure its just calf cramping from the injury and then the dang chest pain is probably just my anxiety worrying about the stupid clots! lol…geez. I’m gonna talk it over with the nurses at the clinic Friday (unless something happens before then…) and get their take on it. It’s so true when you are laid up and alone your mind can start thinking the very worst about everything! I’m okay with being alone, reading, on computer, movies, etc…but sometimes I just get too wrapped up in all these damn diseases I have and then freak when I get a symptom! You can always be free to voice your true feelings about anything I write! lol……I wouldn’t be mad at anyones thoughts on what I write, least of all you! Keep an eye on the ovary thing, but I bet youre right, has to do with the back issue….Thanks again deary! xoxox

  2. Tammy, you are not crazy, you are afraid and you have every right to be but try not to panic. It doesn’t necessarily have to be a blood clot. Can you call the clinic that you go to and speak to someone? Do they have someone covering 24/7? think about trying that. I know you are going through so much and I am so, so sorry. I wish you didn’t have to have all this bad stuff in your life. Do you have anything for anxiety that might calm you down? When I was very stressed out years ago I thought I was having a heart attack because I had chest pain but I was just super anxious. You are not going to die, try not to think about it. We all are scared for various reasons or conditions but we do the best that we can. All your “girls” are here for you. Please keep me posted and tell me you are ok. Sending good thoughts and you are in my prayers. please keep us informed. Hugs, L.

    • thanks laurie! the pain isn’t as bad tonight…just twinges in the chest and the normal pain in the foot and ankle….i think that calf muscle was just spasming or something and then I got anxious and started the chest pain issues…I hope. But I’m going to talk to the nurse at the clinic on Friday, unless I need to go sooner of course. I do have some xanax, guess I should take it and calm the hell down! lol….thanks for reading and helping me with thinking it thru! So glad for m group of girls! xoxo

  3. Like Julie and Laurie said: You’re not crazy! And, you are doing all the right things: monitoring your leg for the signs of a clot, keeping an eye on your chest pains to see if it’s something more than anxiety.
    If you do have Xanax (there is a generic version too which is a lot cheaper than the brand name and works for me), take even a half a tablet. Worry can lead to anxiety which can cause chest pains — that’s what some folks get when they have a panic attack which only makes the attack worse. I
    know it would cost money, but would a blood pressure monitor/taker be helpful? Anxiety, of course, can make your pulse rate and blood pressure spike, but would it show also show signs of a clot or heart issues?
    If it was something you could monitor at home (my mother had to take her blood pressure twice daily for a year due to an incident of high blood pressure [never found out why it was so high that made her quite dizzy, weak and sick]), you might feel more in control of the situation.
    Our health insurance provider doesn’t give us much, but there is a 24/7 “phone a nurse” included in the package. As far as I can tell, there is no charge to use the service. If you have that feature, it might be a good backup for checking when to go to the hospital.
    Also, with approval from the health insurance provider, and if they are in network, with a co-pay, I can see a therapist, clinician or pyschatrist (spelling) for a set number of sessions without a doctor’s referral. While we (here and on facebook) don’t mind listening to your concerns, fears, etc., somebody who works with cognitive behavior or counselling might be able to “teach you tricks” or ways to cope when you feel yourself getting too anxious or fearful.
    Just my thoughts on the subject. When you have multiple illnesses, it’s easy to think that yet another thing has been added or gone wrong, especially when it’s grounded in a real life issue — blood clotting — and with a situation — your ankle — that can complicate/cause the issue to manifest itself.
    My dad had multiple clogged artery issues in his chest/legs(discovered by accident when he was in his mid-50s), so I am hyper aware of anything that might be a sign of the same issue with me (especially since we both create own high levels of cholesterol). So I understand the idea that knowing something can be a problem makes certain things feel like the manifestation of that problem.
    Hang in there. Write when ever you need to: here, facebook, or in an email. Everyone has their fears: some folks aren’t as brave as you in letting them out into the open.

  4. I agree with what everyone else says. I think sometimes the way our healthcare is now set up, it really drives us to be fearful.

    I remember when my daughter got pregnant, (she has a double complete uterus) all we would hear is, oh this needs to be checked, don’t worry but we need to check that, etc. It caused stress for us. And then when it was serious, they would blow it off. And we had the medical bill thing too.

    I have also had to come to a place that I trust that everything will work out in the end. When I look back at where I have come from, I realize that it always does work out one way or another.

    I also have found that living with RADs (Reactive Airway Disease – the result of an accidental poisoning) that I have to get as calm as I can when I suddenly can’t breath or it feels like a boulder is sitting on it. It helps me to think more clearly.

    Sending you hugs and prayers.

  5. I would echo what the others have said here. The most difficult part of a chronic condition is that you struggle to feel as if it isn’t “controlling” you in some way. When you control it…you feel better.

    While you could blow off the symptoms, you didn’t and that’s important. Hypochondriacs are people who think their symptoms mean something without any good reason. YOU, on the other hand, have a potentially serious condition on your hands. The only way that you can feel comfortable is to cover the details.

    While the knowledge of the potential harm is scary…it’s also empowering. Be your own expert. I always get a smile when I tell people this…but normal is just as much what you do as how you feel. In other words, if you go out and live a normal day in your life, that’s GREAT! If you stay in for no reason other than the APS, then the condition has “won”. A positive frame of mind goes a long way and it’s easy for some stranger like me to say it because I don’t have to DO any of it; That doesn’t make it any less true.

    As for your anti-coagulation being suboptimal, that’s probably been addressed but was there anything different? Were you eating Vitamin K containing foods unknowingly?

    Hang in there!

    • thank u lickety split for reading and offering help! u are so right….i will not let my collection of illnesses win…they will not define me. I have so much wrong with me at this point, its a war of like 6 against 1…but I’m still standing so I consider that a victory! I’m still working on getting my blood levels where they want them, going twice a month for checks and med changes….still dealing with broken foot that won’t heal…adhesions continue to cause digestion issues and severe pain, as does the ventral hernia…back issues are relentless…but I am trying like hell to keep my head above water with a smile on my face! lol….I have fallen out of the blogging for a bit…getting ready to jump back in though! So I hope my readers will continue to check in! xoxo

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