Friday, June 25, 2010

How much More??

For my facebook friends, they know how hard it's been. for the rest of the world, the only ones who know how hard it really is are those in my immediate household.

I am very private except on here because not many people know this exists. I truly do not know how much more I can handle. I do not want to hear one more person say "give it to GOD, or it's all in his hands, or God does not put on more than you can bare, or any other "quotable" bible verses Right now, they are not what I need, I need a HUG, a we're praying for you, or simply a simply when Truly led, a gentle hug.

Please don't ask how I feel, I am going to say fine, because you can't handle the truth, There are very few people who know the truth, and ONE special lady who knows it VERY well, she has been my Biggest Inspiration, since she has been through such battles as well. I recall a chat with her, she made me smile, we looked at each other and asked NOW, How do you REALLY feel J I love that woman so much.

My pain tolerance is very High, but I have seriously been contemplating a trip to the ER a lot lately, I have been so sick and I am scared that it is not getting any better. Will it ever improve? If not, is God really using it or is it just taking a toll for nothing?

Only time will tell.

Tuesday, June 15, 2010


This month has been a physical and emotional see saw and its only half over.

We did our financial paperwork for the sliding scale at my primary care doctors office and because Chris's unemployment is officially up this week, I had to turn in some extra papers while we WAIT on the government to decide what they are going to do about the last extension (somehow we were blessed and he actually had one more week, not sure if I miscalculated or what, but what a HUGE blessing it is) Anyhow… I had to turn in those extra papers on Friday, we still have not heard if he will even be approved for the 20 week extension probably because the government hasn't decided if they are going to keep doing it or not (I so am not happy how they are playing with this, if they discontinue it so many bad things WILL happen, there are about 5 people out of work for every 1 job that is available, Chris has gotten 3 interviews for I don't know how many hundreds of applications he has turned in, but 3 interviews in 18 months, but he put that time to good use and is almost done with a degree in Accounting)

My body though is also playing on a See Saw, Last week, Monday I was weak and felt sick all day, Tuesday I felt normal (my normal, not normal people normal) Wednesday I was fine, weak but fine, Thursday I puked all morning and was sicker than I don't know what, Friday, you would have No clue that I had been sick, back to being my normal sick, Saturday we had humidity that nearly killed me, I passed out in the living room and I literally prayed for God to take me home the pain was so unrealistically unbearable. Sunday started off HORRIBLE, I took my shower went to church and the humidity broke with the weather and I felt GREAT, my usual pain is up around a 12 most days on average, no 10s here, my doc doesn't even ask anymore, he knows that my good days are what would have his typical patients begging for narcotics, yet I am on NONE…but Sunday was about a 4 day until probably 3pm, yes, I made it through about half of the graduation party before I started climbing the scale, and I was there til 5:30pm and then went to Kroger after, I got home a little after 6:15pm by 7:30 I still I had not hit an 8, a very unusual rare happening, we are talking Miracle of all miracles day here. I was so elated. I came home, put groceries away, let Lauren play for a bit, and relaxed…then is started to hit…Uhm Uh OH… I Over DID it…

HA… 9pm…yikes, I feel really sick, take meds, drink, lay down Lauren cuddles than goes to bed Chris gets home, THANK GOD he is home safe, Uh OH!! I can't sleep, like tonight its almost 2am and I am still awake, but I am oh so exhausted, my body aches my head feels like those commercials for sinus meds, but OH how I wish this was sinuses, or even a simple migraine, I can't hold my head up, I lie down using support on my neck, I cry quietly in pain, that hurts too, my CPAP mask HURTS today, It's too much pressure on my head, but without it I can't breathe right, my neck is screaming, my head weighs too much, I turn it to crack it, it pops about half a dozen times, turn the other way, same thing, but no relief. I get to sleep…but its fitful cause of the pain, I wake up, everyone is crabby, I feel like I haven't slept at all, Chris enlightens me, its 12:45pm I TRY to sit up, I fall back down, try again, same thing, I ask what the humidity and weather is outside…Not really needing to know, my body is clearly telling me its VERY humid today and its going to be a bad head day. I manage on the 4th try to get up and get to the bathroom, Tears run down my face, I just slept half the day and I still feel horrible, my family needs me awake and I am barely able to move.

It scares them to see me so weak yet so many days are like this anymore. If I do not have an appointment, I do not wake up, I have to have an alarm set or I sleep, it is rare for me to wake up, either that or I have such insomnia I am awake til 5-6am, then I get no sleep and its even worse. Neither works….if my see saw ride continues, tomorrow should be a good day, here's hoping, but I need a few more good days

Tuesday, June 8, 2010

Another Busy Day Gone By

Technically there are NOT two posts today, if this gets up before midnight it's a fluke, if not, "Choices" was still written yesterday, lol Blogger decided it wanted to be down when I was trying to post, since I use Word to do my posts and publish from here it didn't get posted til today. Oh well.

Today was interesting… This morning I had our finance appointment with my doctor's office (we are on a sliding fee scale, income based, but I LOVE going there anyhow) when I got home, I went into the master bedroom to rest, I felt worn out from a single activity and so I wanted to spend a few minutes refocusing because I knew Chris wanted to spend some time as a family, we don't get a lot of that, even with him home…he is busy looking for work and trying to stay occupied, and I am busy dealing with Lauren (and napping because my body gets worn out too easily)

So we went out and did some stuff together and then came home and rested again, Lauren decided it was the perfect time to practice her defiance act…I admit we are dealing with a lot of this as a control issue rather than anything else, likely due to a few issues, but today it made me more upset than normal, so we put her to work and then sent her to her room while I napped. We went to Kroger together just her and I earlier and she enjoyed that time so I had hoped that she would see that she can be good and get attention without it always being negative…

She takes so much out of me when she does not listen and has her attitude issues. Tonight her fit was very different, I felt different and Chris felt it too. We weren't sure why, but this time when she was sent to bed early she was given NO opportunity to disobey, every process she had to do she was followed including being sat with and read to in her room for an hour…usually we allow her quiet reading time before sleep, but we find she moves around on the bed, flops and gets out of it, not tonight, she had a LITTLE choice in reading material, but not much, and a lot of discussion. She is growing up and I think it's finally time… We read a few short stories from a regular book…but then we discussed why obedience is SO important.

Then we talked about attitudes, and pulled out a book that last time we tried reading she was Too young to grasp, Elsie Dinsmore, Yep, good ole Elsie crept back on our shelves, and this time we had a long talk about why Elsie is the way she is. It was really good, I want to see Lauren blossom I want her to learn to have the Character of Elsie Disnmore, that 9 year old who honored God above all and took the bible at its word. Now yes, we understand some things differently, but those, we can explain and work with, however, she also grasps that the books are OLD FASHIONED and kinda freaked out thinking I wanted her to be old fashioned, lol, and breathed a huge sigh of relief when I explained what I meant when I wanted her to be more like Elsie and how she honored Jesus in her life, kind of like a heroine. She felt better when I explained that the original books were written 142 years ago so the times have definitely changed a LOT since then.

Monday, June 7, 2010

Choices, which will you make??

My life has been a rollercoaster ride lately, and there are many days I whine and complain, my family gets the brunt of it, my blog gets most of the rest and a few REALLY trusted friends who have IH and understand what I go through seem to help with the rest.

Today though when I was checking up on my IH blogs, God really tugged at my heart, there are several "Christians" with this disease who really seem to be having a tough time yet they are definitely getting more care than I have gotten but that is neither here nor there, this is not about me, this is about the choice we make. I CHOOSE to function with or without daily pain. Some days, I Can not fully function, yes, I am down to about 4 good hours per day, but you know what, I take full advantage of those four hours.

Today, I went to church, then my 4 hours were up, I should have come home, taken a nap and my day would have been over, but no, I chose to push a little, because my family needs me, If I suffer a little, yes, I pay for it later, but someone shared a story called "The Spoon Theory" a few weeks ago, and it so applies to our daily lives, yes, it was written for Lupus, but I see it so profoundly in IH my, daily life is about how "the spoon theory works" today I borrowed spoons to make Hubby happy.

You see, He and I are both Amateur Radio Operators, Hams, I got my tech license the same day he got his Extra, it was a challenge I set to him, and he definitely held his end, now I don't use the radio, I help with set ups, and I liked going to the events before IH started getting really bad, but I still was always struggling in the heat and miserable, but it was family time and something we did.

Today was Pre-Field day at Metro-Beach, our local state park, we went out after church spent roughly an hour before the storms hit, and boy did they hit hard, now those with IH know that storms DO not agree with our heads, but as a wife, it is a servants heart I CHOSE to spend this time with him. We then stopped for ice cream on the way home as a treat for going out, it was a nice sweet treat for my sweetheart. We got home about 6pm, overall, I was up for about 5 extra hours that my body really struggled to deal with. My point, I chose to do things with my family, yes it rained, YES, My head still went through the roof, NO, I do not have pain meds, but what I do have, is a family who loves me and I have the joy of the time I spent with them. I chose not to complain, Chris could see how much pain I was in, but he knows that these activities are TRUE labors of love. We do things for each other because We can.

SO quit complaining about what you CAN'T do, and start DOING what you can. Realize that you have to do things when you are in pain, this is your life now, its not going to change, Yes, God MAY choose to heal you, but then again, this may be like Paul's THORN in the Flesh, and something you have to deal with, so learn to accept it, you are allowed to have days where that is a struggle, but start counting those blessings, and I promise this ride will, yes it REALLY will get easier.

Friday, June 4, 2010

Down but not out, Overwhelmed but not Hopeless

This has been a HARD two weeks. Back up…I do not even remember when I posted last, and my head hurts too much to go look.

My eyes hurt, I was SUPPOSED to schedule an eye appointment, and if certain people read this I will get scolded big time, I guess it is a mixed blessing that I have been praying for them because they have been so sick lately too? Hmm, not quite sure how that works…anyhow, Both of my eyes are causing me Major pain, I would love to say its cause I ran out of meds, but, that would not take effect today since, oh, I won't technically be out til tomorrow, lol, I took the last one this morning, and I am going to Kroger in the morning to fill the script.

May 25th, Chris and I celebrated 9 years of Marriage, it was a rough day, we realized out of 9 years I have been healthy less than 2, that was a very tough pill to swallow, I came out of remission almost as soon as we got married and have been in various levels of pain ever since, the last 4 years now have been the hardest though…its hard to believe it's been 4 years that it's been so bad nonstop though, even harder to believe I waited a full year before I called the doc thinking it was just a phase and would pass, lol. Man was that a dumb decision…especially since it had been a growing problem for the previous several years.

Anyhow… May 27th I saw Dr. Turner, I have to admit I left a little more than frustrated, I was overwhelmed I needed to ask questions and I didn't get to because he had medical students and was overbooked and very overwhelmed himself…I left angry and frustrated with nothing more than a new script. It got filled and I see him in July…Let me tell you, next appointment BETTER not be rushed or HE will not hear the end of it…I was NOT happy, and now I feel worse than ever. My body is having major tinglies in both arms and legs, I am getting roughly 4 good hours a day, and that is just plain not enough (oh and my next appt with him is at 8am, so if I don't get time, being the first appt of the day, I will have a FIT) I have CONSTANT nausea, and am just fed up with everything. My temper is flaring, which I have read is a side effect of MANY of the meds he has me on and the new one causes swelling and heart racing and all sorts of weird things, Nope don't like it especially since my head is not improving ANY. 2 days of somewhat half improvement is not sufficient for this crap.

Today I saw my Pulmonologist. She decided to run LATE, 50 minutes late to be precise (oh and my Verapamil did not lower my blood pressure it was 159/89, one pt lower than usual after driving through massive construction zones) she wants a pulmonary function test and chest x-ray done before my gastric bypass is scheduled, I am to schedule those for the same day as my appointment with Dr. Zambare in August since I will already be in Southfield (make only one trip, that I can deal with, and I like her techs I have been dealing with them for two years) Then I see her again in September. The only change she wants me to make with my CPAP is to wear it when I nap too, a pain in the butt for sure since I nap 1-3 times a day but my sleepiness scale increased 4pts this time so she thinks I may be having apneas during the frequent naps too and that may be why I am needing more and always tired regardless of how much sleep I get…So CPAP All The time, Chris teased me I might as well just keep it on 24/7 since I fall asleep when we talk sometimes, I don't think I am that bad, but I do zone out a lot.

Ugh Headache getting much Much worse, didn't think it could get worse than it was, I may need to use an Ice pack tonight, I posed a question for nausea relief and every suggestion was full of sugar that I can't have I almost cried, I think I will be asking for an appointment with my PCP when I see his finance lady Monday…I am so tired of the constant nausea.