Friday, February 25, 2011

I have been SO bad about keeping up

Oh my goodness this has been a Chaotic couple of weeks. Our finances have been the Pits, and when I say the pits, let me put it this way, Chris's unemployment stopped in November so we have been surviving off of my disability, $700 a month and our Lot rent is $468 and our Mortgage is $169 you do the math to figure out the rest of the bills…and YES we are responsible for Gas, Electric, Phone, internet, Car insurance, fuel for the car, etc, plus I have had bukus of doctor appointments, including my surgical follow up and a stress test.

Needless to say, it has been VERY VERY stressful. I attempted to apply for aid, but its not going to work, they want Chris to do way more than what is feasible with me being so sick I have been doing much worse due to the stress, and they are expecting him to practically quit school only allowing him 4 of the 18 hours school says he NEEDS for study time plus seat time, then they expect him to "volunteer" for 26 hours plus job search at jobs that are NOT available…He has been job hunting for the last 2 and a half years, there is not 26 hours of jobs available in our county per week. We found 6 worth applying for, he is not going to apply for things he is not qualified for in any way, and he is not going to apply for stuff that he has already applied for…needless to say, He has no experience in a lot of things, and where his skill set is he is applying…but for what the state was going to be giving us to help, they were not going to be giving us $3 an hour for him to do this "work search" and he was losing a lot anyhow.

Plus I have more doctors appointments next week as well Those cost him hours, I Need him to help with my being sick I have been having more dizzy spells and such and am having my gallbladder out on Wednesday…but feel so nervous and excited too. I have been so sick lately that I just hope it helps.

Lately my head has been acting up more than Humanly imaginable, and my dizziness and nausea has been ridiculous, I have had trouble seeing and just been totally having a lot of difficulty but I am not sure if its worse cause of the stress or because my pressure is high.

I saw Dr. Masters yesterday…lets just say I now know WHY the ablation didn't happen, I am not upset anymore, she tried for over an hour, the instrument that gets the balloon up to the uterus was too short and she tried several different tips. Basically I have a very HIGH uterus. We are going to Try an Implanon, I have to call Jenny on Monday afternoon to make sure they have one coming in or in the office… the Implanon can have a variety of responses, my bleeding can be lighter, stop completely, or heavier, if and only if it gets heavier, we will be discussing going to a different specialist for a robotic hysterectomy, because I can not do more hormones and this has been ongoing since I was 13, I would have been more than happy to have had one done from the get go, but, she wanted to wait on that as a last resort.

Well, I am totally overwhelmed I am Glad God is in control, because if he wasn't, life wouldn't work, no matter what. Praying Chris gets one of the jobs he is applying for and God provides the money we need to get us through.


Saturday, February 12, 2011

So many days I am in a hurry and not thinking about what others go through, when I watched this I about cried, for many reasons, but the biggest one...I have walked through those shoes, I have felt like those people he is looking at, many of them... we all need to THINK of what others may be going through before we jump to conclusions.

YouTube - Get Service

Friday, February 11, 2011

Half of a surgery? And RARE DISEASE DAY is coming up

Well, I had a D&C and Hysteroscopy today, my ablation was not able to be done, my uterus is enlarged and I have to discuss more at the follow up on the 24th.

Dr. Masters did tell me about it and explain it but I had just woke up from the anesthesia so I don't remember much of what she said and to be honest, lol Chris didn't understand what she said, so I will talk to her in 13 days and figure it out then.

On to Rare Disease Day

On February 28, 2011 We are celebrating a Day I wish we didn't need. Rare Disease day is very important its recognizing those of us who have things wrong that others do not know about, I have 2 potentially 3 very rare diseases. These things affect EVERY bit of my daily life and truly alter how I do things, how I function, and choices I make.

When I say I have Chiari, Intracranial Malformation, or Orthostatic Hypertension, People look at me like I have a 3rd eyeball. They do not know what they are (now people DO know A lot about orthostatic HYPOtension, or low blood pressure upon standing, but mine doesn't drop, it goes WAY up…way way up…needless to say, I guess I just like to be unique.

Today prior to my surgery Dr. Masters walked in and the first thing she says is she talked to Dr. Dobrin today and she was talking about how she wanted the stress test before my surgery with Dr. McIntosh in March…Hello!!! I am the topic of conversation, my doctors know me, yes, but to discuss me in regards to ANOTHER procedure, OH MY Goodness, ya, I love that I am that popular, but it kind of worries me too, because it means that they are looking a lot deeper into my case…

Oh well, it will all be ok.

Friday, February 4, 2011

Well, we have dates, yes, you read right DATES TWO different dates

I am still having some of the same surgeries done, but I am scrapping the tubal for now, I did some more homework on the Implanon and Chris and I have been abstaining anyhow, plus, well, long story short, I am not in the mood to wait three months to get my gallbladder out, it's causing WAY too much pain in the here and now.

So…Monday morning when Linda, Dr. McIntosh's scheduler called me to let me know what was what…I was not too thrilled and she told me to call Carol, Dr. Masters' scheduler…which I had to wait til I got home to do, as I was out when she called, basically, Dr. Masters is at Beaumont every other Friday and Dr. McIntosh is there only one Friday a month, but EVERY Tuesday, Wednesday and alternating Thursday mornings. Friday is his surgical day elsewhere (he also does surgery one day a month at Detroit Receiving and St. Johns, and alternating Thursday mornings he is at the outpatient center. (He is chief of surgery at Beaumont where I will be having mine done though)

Anyhow…His Friday and Her Friday did not come together til the END of April, Uhm, I know that COULD work, but not for me, especially since I had been spotting AGAIN, this on again off again stuff is getting old…and well the stomach not tolerating any food without two anti-nausea meds is getting even older.

So, I cancelled the tubes, we will TRY the Implanon, if it doesn't agree with my liver levels (my levels are currently behaving) and My body seems to like the low levels of progesterone at all times, so…I am willing to give it a go, it can be removed if it doesn't agree with me, and I trust my doctor, and she works really closely with my other docs too, so if it doesn't go well, There is my PCP and Neuro RIGHT THERE, and when I say right there, they are in the same office…but we will be having the Ablation done with a D&C and Hysteroscopy done Next Friday (unless her earlier case gets me bumped) February 11th.

THEN, after a 3 ½ hour clearance appointment today with Dr. Dobrin, have I mentioned how much I LOVE my primary care doc? I have my tentative clearance for my gallbladder on March 2nd with Dr. McIntosh…now Why was my clearance appointment so long? I was asking myself the same question, my primary doc did a lot of things my old doc NEVER did. He said he should or could or would do them, but never did. She did them. She wanted a chest x-ray, EKG, pulmonary function test, Lab work, she went over the results before I was allowed to leave…since my white count was high, she wanted a urinalysis, and MORE blood work (which unfortunately couldn't be drawn off what she already had had drawn, so they had to poke me again, not a fun thing for someone who only has ONE good vein, but the tech got it first poke TWICE)

Now, I tell you, I love my PCP. She is VERY thorough. She saw I was in pain, she went over my entire history, my med changes since our last visit, ironically I saw her December 17th, December 23rd, and actually had med changes to report from a little over ONE month since our last meeting (I see her way more often than I have ever seen any primary doc, and I see a gazillion specialists as well)

I saw my Podiatrist yesterday, My broken ankle is officially Healed (sort of) the bones are almost consolidated, however the ligaments and tendons will probably give me grief for a LONG time, he said it could take close to a year for them to heal properly. So now we are back to treating the plantar fasciitis we shall see how that goes, right now my whole body hurts, so I am just resting, but the legs need to adjust to being done with the boot too.

Then today I could have danced a jig and kissed my endocrinologist. Yes, he had VERY good news. Ok, my diabetes isn't gone, but it's VERY VERY well controlled, as in Uhm, I can cut down my Metformin well controlled. My HbA1C was 5.1, Very GOOD, My Cholesterol and Triglyceride numbers were all pretty good too, the Bad Cholesterol would be good if it wasn't for the diabetes, Grr, so if it wasn't for me being on meds to control my sugars L All of My Cholesterol numbers would be what he calls good. He is not putting me on new meds for them though because my liver is a big concern even though my liver function tests he runs showed good…but with my other liver issue, which I did let him know about Dr. Wille's findings (he likes me seeing Dr. Wille) he does not want to cause any more damage to my liver from medications.

It is so funny hearing over and over again, with that, you know you should not drink any alcohol or smoke, and I just giggle, I have had a grand total of TWO, yes, TWO alcoholic drinks in my life, I am 34, both of them were strawberry daiquiri's one of them I was under aged and it was a goof up and I had two sips and had it sent back to get the virgin kind, the second I was 25 and had just lost our first child, after the miscarriage we went out and I was so depressed Chris took me to Karaoke night to try to cheer me up, it didn't work. I saw too many pregnant people drinking and that made me mad. Ironically we were pregnant a few months later and now have a beautiful 8 year old one and ONLY child, and I am completely happy with her being an only child…the smoking I have never and will never try, I don't even like being around second hand smoke.