scared silly

Okay so I spent the first week knowing I'm pregnant telling everyone that we weren't planning for it and that it's a surprise and I don't know if I'm happy about it yet. Hello I've always wanted a large family I have struggled with infertility the entire time I've been married I adopted my beautiful little girl and through her was blessed with my son. I truly believe I wouldn't have gotten pregnant with my son if I hadn't had my daughter, something about being around her stirred up my hormones and I truly believe she is the reason she has a brother. . . .will she be happy to learn of this in the future? that still remains to be seen as they r beginning to fight like cats n dogs, it's exhausting.

Yes, I want this baby freakishly want to hold and smell and snuggle another little creation of me and my husband, I'm terrified to voice it. Scared to begin to dream of the little one actually making it. If I lose it I need to be prepared emotionally. Already I'm putting my hand over my stomach and smiling so I know I'm in danger already, I can't help it I want this little one so badly. I have to believe everything will work out. I'm not religious and neither is my husband funny enough we have never argued over this fact it just is, the older my kids get the more I wonder about how to introduce them into religion as I intend to allow them to choose. Not being religious it still makes me feel beter to put fourth fervent wishes of my baby making it through gestation.

Jake has cautiously told me he is excited but now really worried about my health, not that I can blame him he is the one that has to carry me when I can no longer walk due to a pinched nerve. He is the one who gets to sit helplessly while I scream in pain. It eats him alive that he can't take this disease from me. He watches me for signs of limping signs of getting tired when we are shopping, when he is around I can't over do it cause he wont let me.

I'm cramping I keep telling myself its my uterus stretching but that doesn't stop me from looking at the toilet paper when I potty. For the curious few out there who do read my blog, yes I intend to take my pills throughout my pregnancy one I can already tell my anxiety level will benefit greatly two I think it had a lot to do with me getting pregnant in the first place we haven't used protection since my miscarriage last year and three I would be recommended to take steroids throughout it if I was still seeing a doctor. I have to keep the inflammation down. . . .. I'm convinced me pinching my sciatic nerve last year is what led to the miscarriage I am terrified of pinching it cause as sure as I'm sitting here pinching it would mean the end for my little one I just know it.

boy was I wrong

update. . . .I took a pregnancy test last night two days early and late afternoon. . . . . . .the test was brightly positive! So I'm working on being excited I'm still of course scared to lose it.

reality checks are terrifying

So I stumbled across someone's blog who goes into detail how over the course of fourteen years this disease killed her. . . . . .....systematically shut her down, I don't let my mind wander down the dark and dreary very often, I cant. If I thought that I only had fourteen years to go I would panic and feel scared out of my mind daily and that wouldn't do anything but make my thinning hair maybe go bald and that wouldn't help my self esteem.

I know my lifespan is shortened by this I know they are still learning the ins and outs of this disease and there isn't a whole lot of what their leaning that is any way sunshiny I haven't read up on the research since a brief glimpse showed me that the inflammation goes to the heart. . . . . . . .I am leading a blessed life, I have two beautiful children who r the light and spark of my very soul their laughter can make my heaviest heart feel lighter. I have amazing family, I know they all are waiting for me to ever ask for help and it's nice to know if this ever crushes me to my knees I have somewhere to go...... that thought alone is bringing tears to my eye's for me to ever need someone to help me that much with my daily living is flat out to much for my mind to handle.

I am not this disease I am not this weak person who cannot use her right arm right now. . . . . .I am not this crybaby who cant, I am someone who can. . . . . .I will figure this out homeopathic ally safely without adding to the risk I already face. I gotta go I just depressed the shit out of myself, I am not sure if denial is healthy but neither is laying down and saying okay take my body. this is my fight and it's the fight of my life i pray to whoever is listening to give me the strength to never give up, to feel the fire of determination and fight instead of the hopelessness and fear that I can't verbalize out loud to anyone but on here, to say out loud I'm afraid of dying from this I'm afraid every time my chest constricts that "this is it"  just sounds in my head so very weak and hypochondriac that the words can't escape my lips.

ginger stops the burn

so I haven't written in about a week because my right shoulder has still been really flared out and brings tears to my eyes if I move it the wrong way. . . . .that's saying it hurts A LOT. Yesterday it was almost like I wasn't on anything the burn was back in my upper back with a vengeance and I spent most of the day trying to get away from myself. When I can't ignore it I'd rather be anywhere but in my head, it's a trapped feeling it's a helpless feeling and I absolutely hate it. I burned and ached all day, every joint seems to filling with inflammation making nowhere comfortable and nothing safe.

After suffering all day I started to really think about what has been different and the only thing different was that I have stopped drinking ginger tea out of whatever reason I forgot mostly and I have to keep it frozen so it takes a few minutes to make....... three glasses of ginger tea and my shoulder was feeling about 50 percent better and the burn was gone. Needless to say I have learned the importance of not forgetting the stuff that works and a little effort is better than a lot of burn. I hate how I get when in pain I withdraw and hardly talk keep myself busy to the point of exhaustion and stupidity. I washed the truck yesterday and cleaned the house and whatever else I could to not sit down and be mauled by the kids. I feel tremendous guilt because I barely like being cuddled when I'm not in pain because my kids are so big now the cuddles hurt any ways even if I'm not hurting at first. But when I'm flared out I absolutely do not want touched. My poor kids are going to grow up emotionally scarred to my lack of physical love.

I feel better this morning feel a slight burn and my arm hurts on my first glass of ginger root and green tea followed by two of my pills. I feel more alert than I have in days that is a huge plus. I really didn't think it made this much of a difference good thing I'm not playing around with anyone else's health cause if a doctor was doing this to me I'd be pissed that he couldn't stick to what worked.
I still haven't gotten the nerve to go and get my license and make that doctor apt. I'm almost terrified of being dismissed and I know my Rhuematologist will be calling soon I've missed apt.s I can't hide forever but I wanted a little time to see if I can really get it working before I went in again. to be able to show them the marked difference and that it was working no matter how controversial and that my quality of life was more important to me than what is socially accepted as the norm. Although I personally am never going back I completely understand the desperateness of anyone who turns to the injections. yesterday alone was enough to make me think about the prednisone again and start telling myself that the damage was already done with the pred and I could maybe consider going back on it at least till the inflammation leaves my shoulder. . . . .Jeania Smith standing tall  although slightly hunched 

shoulder flare

so my shoulder has become severely inflamed and or  pinched nerve in my neck basically it's nerve pain and I can barely move my right shoulder again. I'm not sure how long this will last as it has only happened once before so I guess this is going to be a new recurrence, it's not totally unbearable but it is quite annoying I'm trying to paint my sons furniture for his room and the painting motion is hurting so it is ticking me off. I've began another batch of my pills and am very relieved to have figured out the prob with my crappy batches. In Oregon there are no dispensaries there is no where for me to go n just get my new meds I have to research it and figure it all out on my own. It's not that hard thankfully I suck at the math parts of it, there is an equation for oil to particles equation but mostly I just do it my own way. No further updates to speak of, my daughter is loving school and she is so smart in kindergarten and has a basic grasp of adding and subtracting and knows her ABC's and can count to twenty. She is on the list for kids who don't know how to tie her shoes and I would be right on top of this except with any part of my body consistently hurting I have little to no patience so I"m trying to wait it out or wait for the weekend so daddy can.He is such a good daddy, I hear stories of deadbeat and missing father's and it makes me appreciate him so much more.

I am still kinda bummed that this disease is something I will never get rid of. I think about it in the long term and it really scares me, I fear a wheel chair so so much. I don't feel as isolated since I accepted it, I figure the people who are my friends will understand when I can physically do something. The fatigue is back as well but I still am managing to get a lot more done than I would without the meds. I read somewhere that stopping prednisone will cause a temporary worsening of symptoms so I'm hoping once the pred is flushed the inflammation in my shoulder will leave and with it the fatigue. For the most part I'm still enjoying myself and I feel like I'm waking up from some sort of dream, I enjoy my family time instead of begging for it to end so I can sit on my heating pad. I'm still struggling to lose a little weight but for the first time in my life I'm really not worried about it I have so much going for me that I don't care. I have noticed a huge change in my kids as well with me more calm and relaxed they seem to be totally different kids. I feel kind of guilty for realizing how much control I had over my families moods. My husband suffers from that seasonal disorder so he is struggling a little right now but even he seems so much more relaxed, I rarely yell anymore and I am a screamer when I get frustrated, I rarely get frustrated and its a very welcome side effect of the meds, I was considering a therapist before I started this, that would have meant more pills and more side effects. My hair is still kind of falling out not sure how long till that stops, still no bald spots though thank goodness. Jeania standing tall and smiling

hip slip

k so the past three days have been a little scary, I was having trouble getting the potency of my pills right I was diluting with waay to much oil so I wasn't getting the full amount and the inflammation flared in my hips and my right hip slipped. I was in the tub when it happened i felt it but I thought it was sliding in cause I was laying in the bottom of the tub and I stuck my foot up to the falling water and felt it go inward not outward so I thought cool it's working on the inflammation. and the way the nueropathy works is that it slowly starts and the little warnings started coming with every step and getting more and more intense and painful. thankfully I made a good batch after three days of barely ne thing so I can report the pills shorten the pulled time. usually if it pinches it stays pinched for at least a week and then all of a sudden the pain intensity would dull and then it would take a cpl weeks for the irritating twinges to stop. I have went from thinking oh shit and crying because I thought well this isn't going to work I cannot take the hip pain it literally will drive me insane. I told my husband I was going to look into getting some sort of pin or hip surgery to deaden the sciatica or go back on the prednisone. There is no compromise when it comes to the hip pain I just flat out cannot take it and would do anything to escape the pain. One day after taking the right amount of my "meds" it slipped back in and I'm already at the annoying twinges stage. I'm so relieved :)

vellus

 so last night Jake my husband had to hold over so kind of out of boredom or whatever I took yet another shower as anyone with this disease or arthritis for that mater becomes almost aquatic because the warm water is so very soothing that made yesterday's count at three. I looked in the mirror when I got out and didn't have my glasses on so I had to lean in close n look in the mirror. . . . I have tiny hairs all over my face I'm literally furry. Thankfully unless you lean in real close you cant see them they are all tiny vellus hair again caused by prednisone use and can take a year to fall out. Really who knew all of this came from one tiny pill and a small dosage at that hell I take 50 milligrams of tramadol in one pill and I usually take three of those so the most I've been on prednisone is 60 milligrams . . . . . .Sigh. I'm hoping no more nasty little things come around now I just need to remember what date it was that I quit taking it so I know what to look forward to.

I woke up this morning with the same pain in my ribs and a little in my back, I've been riding my bike for at least ten minutes every other day and my hips seem to be plugging along I have a few random slightly painful twinges but so far I'm still walking. The thought of actually slipping something is my greatest fear and how to explain what that feels like is almost impossible one it hurts to the point of me going mad literally just insane from the pain, then add the helplessness I feel because I have no choice but to move as little as possible and wait on the couch until it heals which is usually weeks. I'm afraid of it . . . . .that's putting it lightly I'm terrified of it. Last year at this time I was pregnant. . . . .I pulled my hip and could barely walk across the room, I took low dose aspirin I was that desperate I was out of my mind with the pain every time I took a step, I'd grind my teeth together and push myself as hard as  could just to go to the bathroom and barely refrain from screaming when I had to bend to sit or to stand up once I was done. I lost my baby . . . .. .. .it is something I will always wonder if I caused because I couldn't take the pain. . . .... . .. . I researched it first it said it was beneficial in some pregnancies so I hold onto that as a thread of maybe it wasn't my fault, I wanted my baby more than anything and the pain that I feel even now is still enough to make me cry I miss my little peanut and I will feel guilt the rest of my life.

I took three of my own pills when I started typing and in the time it has taken me to write this the pain and stiffness has already left enough that I can stretch my arms up and bend backwards a little. . . .the stretch normal people take so much for granted I now get to remember how good it feels. . .. . .

skin is slowly clearing

my legs were beginning to look a lot like someone with diabetes the skin was almost see through a couple weeks ago and I'm really happy to report that they r looking good. the bruises are gone and the scars that were purple have turned to a pink and look to be healing more and more. My face is still having some steroid acne spreading around it went from my chin to my forehead for some reason but even it is less and less. I woke up stiff and just kind of edgy today but not a whole lot of pain it was in the bottom right side of my ribcage and nothing sets my day off to the wrong start than waking up and not being able to take that first morning deep breathe. I took a shower and popped my pills and it faded pretty quickly. I love how after I take my pills I can put both my hands straight up and stretch a little I totally forgot how good it feels just to stretch your trunk. To be clear I still feel pain but on the pain scale it rarely goes above a two or three and before this it stayed at a seven or an eight, having been used to such a high amount of pain the almost tenderness I now feel is so easily ignored.

I am now trying to lose a few pounds as I have packed it on in the months since I've been on the prednisone twenty pounds or better I think I weighed in at 174 before I started pred and I'm now at 190. . . . .I'm hoping it falls off in no time but honestly I'm less stressed or determined about it than I am just enjoying my new found life. I still experience fatigue almost daily but from having a four and five year old constantly awake and running around nap time isn't something I could enjoy any ways. I have horrible self control when it comes to dieting I have a really hard time saying no to the kids fruit snacks and to the husband's lunch snack cakes, I go past the cabinet and I have to stop and look like something healthy is going to be in there.

I am still drinking the ginger root tea with a green tea bag in it and although it tastes like warm poo I have a thought that maybe it helps reduce my incessant need to munch. I have drank twice since I started my new therapy and it's almost like my body is totally rejecting it. I get so sick the next day I can't stand to hardly eat and this last time it took me till four in the afternoon to even get out of bed I had seven beers and spent the next day with a hangover so bad you would have thought I drank a fifth of whiskey. One of my biggest motivators to drink was the pain I always felt in my back and my ribs and ignoring it by the end of the day was impossible so I drank and almost on a daily basis. This is not something i would ever admit to the doctors with how much pain meds they had me on which by the way I have only taken like six ultrams in three weeks. before I could take six in a day and it wouldn't touch it it would dull it a little I quit smoking and I quit drinking and I'm trying to lose weight hell at this point if I wasn't so happy with how much I have improved I'd crack a joke about being nunish.

Even my marriage is improving, I think that is due to me having more patience and I'm not as exhausted as I was. Before I would take a nap and be in bed by the time he got off work at eleven so we barely saw each other now I rarely nap and I stay up with him to watch a movie almost every night. My cage of pain is lifted, my life is returning to my own and I wish there was some way I could shout the benefits of all of this to every person that has AS, I've suffered in silence and in so much pain for so long it's really hard for me to not reach out to the support pages that I am a part of and scream the benefits. I'm not naive I know this isn't the choice many would take, I know what I risk but it's worth the risk, before this my life was so painful I didn't look forward to my days and when I woke up there was so much pain I pushed myself to get things done and literally couldn't feel anything but the pain. My greatest hope is that the government makes it legal gives this relief to other who really need it.

steroid acne

I haven't posted in a couple of days due to the surfacing of a couple things that has slightly depressed and or worried me a little. I've learned that the flu like symptoms i felt could have actually turned really bad and would tell anyone reading this do not stop cold turkey it is actually life threatening as your adrenal glands could have completely shut down while on pred. Thank god I'm done with it, however the effects are still lingering and quite annoying, I have acne really really badly the kind that's under the skin and itches like mad and then hurts when u scratch it. Hot showers make all of the spots itch worse so my favorite pastime has turned into a scratch fest. I have been noticing pain in my right hip radiating down my leg and of course I'm worried it still hasn't full blown flared but I am definitely afraid.

I woke up this morning with a headache think it's due to too many pills at bedtime i took four the night before and woke up in alot less pain so figured five would surely take it all away right? wrong, too many has the opposite effect I guess everything hurt. I called in my ultrams today and took three already so it's still not really gone away. I rode my bike two times today hoping maybe tomorrow i will wake up and there will be no pain in my hips again. I have a theory it is either the garlic or the exercising thats keeping it out of my hips and the garlic gives me the nastiest gas. My poor husband gagged n ran away last night, i laughed so hard i almost pee'd good thing that poor man has a sense of humor.

I may be worried that the inflammation is coming back but I can still say I'm done with the pills I'm done with the injections give me pain pills sure the rest of it can be shoved where the sun don't shine. I'd rather go through my diet and exercise and call it good I'd rather not risk cancer I'd rather keep my hair I'd rather not develop some other horrible disease as a side effect of the drugs I'm still confident this is my best course of action and I'm still gonna have bad days evidently but my mood is still mostly positive. Although I have to say I think prednisone affected my moods so very much I dont feel the rage any more I don't get stressed over hardly anything and I like that so very much