Hi, guys ;)

Hi! I don't have a lot of new medical updates because I lost my insurance on May 27th. I'm pending Medicaid, which might be a real blessing, as they pay 100% of medical while my old insurance had a 20% co-pay on everything. It might not work out with my Marinol prescription because it is higher than the "allowed" dosage for Federal guidelines. I don't want to purchase real marijuana because it is illegal and that scares me a lot. That probably comes as a shock to all of you, that I would be "scared of doing something illegal!" Also, Medicaid won't pay the insulin pump supplies because it hasn't been clinically proven to be a necessity. I don't understand their logic, since it costs much, much more to hospitalize me than to pay for preventative supplies.

My blood sugars have been fairly stable, though I haven't had a Hba1c since May. My fasting is about 200 each morning but after that it is lower and stays controlled throughout the day. I've been eating and digesting fairly well and have put on 25 lbs. which was truly needed. This time last year I was about 30 lbs. underweight and looked very bad.

It was a hard summer. I got out for pleasure twice, once with my husband and once with my family and my dad. I saw Xmen with my husband and went to KY with my family and dad. He took everyone to the Creation Museum. I made it to the hotel but wasn't able to join everyone for the museum or for the King's Island venture the kids and hubby went to. I was thrilled to see my dad and honestly, the hotel was extremely comforting and relaxing. It had a California King bed and it was incredibly comfortable!

My shoulders have been doing especially bad. I am in constant pain and am considering having surgery on them again. Once Medicaid comes through, I may try chiropractic care and maybe even acupuncture prior to giving in to surgery. Do any of you have experience with either field that can advise me on whether or not I should try them? I would love to hear some testimonials so I know what to expect as far as results.

Iritis has plagued me this year. I have non-steroidal anti-inflammatory drops for it and they help the pain within about 12 hours. It takes a few weeks for the inflammation to be cured, but it comes right back every time. Not having insurance, I haven't seen the specialist for it and am out of my prescription of drops but as soon as Medicaid kicks in I will go back. In the meantime, I've made the text on my computer HUGE!

On a "memorial" note, the mother of one of my oldest friends, Heather, who passed away due to Type I Diabetes problems when she was in her early 20s contacted me by email a few months ago. It was amazing to talk to her and remember Heather so fondly. We were best friends in 6th grade, which is when she was diagnosed. I was diagnosed a few years later but knew quite a bit about it through Heather. We lost touch as we grew up, but one day I was in the elevator in the hospital, flat on my back, and heard her voice. I said, "Heather?" and it was her, in the same elevator! How bizarre, right? We exchanged a few notes back and forth through the nurses and got back in contact with each other for a little while, but lost touch again after that. I just want to say, I love and miss you, Heather! You were so fun and energetic and I'm really glad that is how I remember you. RIP, dear girl ;)

Walking On Sunshine!

I just wanted to let everyone know that my toe is looking great! The skin on it hasn't grown back 100% but it's just the very top layer. It doesn't hurt at all and I am completely recovered from C. Diff. (thank you to everyone for the well-wishes and suggestions. The yogurt helped a lot).

We're still working on the scooter issue and I may have found some on Craigslist that are able to go in the trunk of a car. They need some follow-up and it appears that we'll need to get a lift of some sort to lift it into the trunk. The whole idea may need to be abandoned if the price range gets too high. If that happens, any funds will go towards Home Health Care. Thank you to everyone who has helped out and cared about the hurdles I'm determined to jump over!

I made a decision today that I'm going to start taking my THC every morning, as prescribed, instead of skipping some days. I'm going to do a one-hour stretching schedule as soon as it kicks in, as I did today. I feel longer and leaner, and my muscles don't feel as tight or as curled or atrophied. While I was stretching each one, I made certain to concentrate on relaxing everything around it and really letting it stretch out and it felt wonderful. I'm sure I'll be sore tomorrow but in a few days I think it will be worth it. Immediately after stretching today, I could feel my toes more than I have been able to in months. That has got to mean something good.

I'll keep everyone posted!

-Connie

Good News

Last night Matt picked up a used walker with a seat and basket for me. Ed Brayton, from Dispatches From The Cultural Wars (http://scienceblogs.com/dispatches/) found it on Craigslist for only $65 and paid for it so we could pick it up right away! Thank you, Ed. Also, thank you to everyone that has been helping through posting, donating, and contacting me- these efforts will go toward a motorized wheelchair and then we'll move on to getting home health care so I can get weekly IVs here at home. I appreciate all of you so much!

C. Diff Update

Hi, guys ;) I wanted to update everyone on what's going on, especially with this last round of illness. I'll give the RD version for those of you that don't know what has been going on. In January, I got a Cellulitis infection in my left big toe. Not only was it painful, but it's a serious risk for Diabetics and can result in amputation. I was treated immediately in ER with an antibiotic and then continued treatment for 9 more days. That particular antibiotic, however, can cause CDiff. I immediately got severe diarrhea (sorry, I know it's gross) and started bleeding with it. We went back to the Emergency Room and I had a CT scan of my abdomen and it showed my intestines were inflamed, but I had to continue treatment for my toe. I started including probiotic yogurt with each meal to encourage pro-flora and saw a little improvement, but was soon having to wear adult diapers because the problem was so bad and I was bleeding so much. Let me tell you, there is nothing as humbling as having to wear a diaper as an adult. I'm sure it was good for my character.

The problem continued until last week, when I was admitted to the hospital for severe abdominal pain and blood in my stool and vomit. Five days later, they did an endoscopy that showed nothing. They sent me home and said to follow up with my Gastrointerologist.

Yesterday I went to see him, and he was extremely frustrated that they waited 5 days, sent me home while I was still bleeding, and didn't check my stool for CDiff even though I had told them about the antibiotic and that I thought I had CDiff. So, he ordered a culture and I should know within a few days what the diagnosis is. I am out of pain and have had several wonderful days in a row, even though those days have been filled with lots of diapers, hahah.

He also increased my Marinol prescription by 7x, so now I have enough to prevent vomiting regularly. The Marinol pills are very small so they are easy to keep down, but they do make me quite high. I'm not completely sure how I feel about that since my kids (17 and 19) are still at home. I suppose it's something I'll struggle with for the rest of my life. I'm afraid it will influence them to experiment with pot while they are still young. On the other hand, if they experiment with drugs, pot is certainly the one I'd choose since the worst thing that can happen is they'll sit in my basement and eat too many twinkies instead of getting arrested for some drunken brawl!

Diabetes-wise, things have been pretty good. My sugars have been very stable and a close friend has been funding sensors. We are trying to think of ways to do fund-raising again. He suggested a cookbook sale, and I was into it at first but when I started looking into it I realized it's a really bad idea for me because just reading the recipes often was making me nauseas! I really don't know if I'll ever be able to eat normally again.

For those of you interested in other areas I still need funding for, my power chair requires $1200 out of pocket, and my walker requires $300 out of pocket. I'm hoping to get these this year, as I have been mostly immobile again. I would love to be able to spend more time with family and friends, and get around my house with ease.

Again, I thank everyone for their thoughts, prayers, concerns and help. Let me know if any of you have questions.

-Connie

Celebrating Freedom

I have stayed out of the hospital since May 5, 2010! An entire month without any ER visits or hospital stay! I have had handfuls of days at a time where I am well enough to eat solids, go outside for a bit, and I even went out to eat with my husband and one daughter. Things are good! I am grateful for any time I get with my family.

On not only a wonderful note, but also as a serious warning to anyone taking Ibuprofen, Tylenol (acetaminophen), and/or Naproxen (all anti-inflamatories), it appears that a lot of the intestinal issues I was having (intestinal bleeding, severe abdominal pain, CT scans that show inflamed intestinal tissue, stomach cramps, nausea, vomiting) may very well be caused by taking these medications for an extended period of time. What I don't understand is why it has gone on this long undiagnosed. I have seen so many doctors (including a gastroenterologist) , had all sorts of examinations, CT scans, colonoscopies, etc. and all of them gave diagnoses that were incorrect- Crohn's, Ischemic Colitis, Irritable Bowel Syndrome. I'm thrilled that I'm doing so much better without the above listed medications, and my General Practitioner has changed my Vicodin to straight Hydrocodone with no anti-inflammatory added. If you're having symptoms like these, ask your doctor to consider the possibility that you are over-using these over-the-counter medicines.

That's all I have to say about that!

Found My Password

Well, after a computer crash, I had lost my password to access this blog. I was going through an old journal of mine recently, though, and found I had written it down! I must be one lucky girl.

I'm sure many of you are wondering how my health has been and if there have been new developments. I've been on the CGMS for almost 2 years now and a lot has changed. I don't have the insulin reactions I used to, though I still have a lot of trouble with high blood sugars. I've had several HbA1cs done over the time period I've not blogged, and they have ranged anywhere from 6.0 to 18.3, which is absurdly high.

Last summer was probably the best summer I've had in a decade. I was able to get out with my family and do simple things that make being alive worth it. My oldest daughter graduated high school earlier this year and is attending college to become a dental assistant. My youngest daughter is competing in high school show choir and I was well enough to make it to her concert last night, where she had a solo. Life has been good!

There have been a few medical set backs. I have started having severe intestinal issues and, so far, they've thrown out but retracted a few diagnosis-es. Things are still up in the air with it as I'm trying new medications. I also was given a new physical hurdle- Footdrop. This is a condition that is caused by Neuropathy, where the foot loses the ability to pull the toes up toward the shin, causing the affected foot to drag a bit while walking. I'm considering getting an orthotic for it, even if I only use it during my sleep. The loss of some of its mobility has caused Plantar's Fasciitis, but it's a very ephemeral problem each morning.

Now that I have the password to this blog again, I'll keep you all informed. Thank you for reading and for all your positive thoughts and compassion!

-Connie

Out-pouring of love...

I was watching Oprah today and there was a couple on that were expressing their gratitude for people helping them after having a multiple birth. They said that things would mysteriously appear on their doorstep- diapers, paper towels... all sorts of things that helped them through such a beautiful but hard time. I started crying because I understand their wonder, their disbelief, that so many people, strangers, cared so much about them. I understand, through all of you, what it is like to be humbled by the over-abounding love and humanity inside everyone around me. To be reached out to by the hearts of others. It is a feeling indescribable, and I only hope I can live up to who I am supposed to be as a person.

You all have raised enough funds for me to purchase another Mini-link once this one stops working. It is over a year old and Medtronic said it would die sooner, but it's still working just fine! My long-time friend and science blogger, Ed Brayton, wrote another public plea for fundraising that was met, once again, with compassion and generosity (http://scienceblogs.com/dispatches/2008/07/asking_for_your_help.php#more). Thank you all for your constant support. Having this device means that my blood sugar stays within a target range of 70-150, every day. While this is slightly above normal (70-110), it's necessary to set the parameters a little higher so the monitor isn't going off every 5 minutes. I've only been wearing the monitor for a few weeks (I had run out of sensors) so I won't be having an HBA1C done for approximately another 2 months (it averages a 3 month period).

I've been able to do things like disc golf with my husband, go to a music concert and even visit my in-laws this summer. I am so grateful for these blessings. Thank you all!

Update

This has been a post overdue for quite some time. The Paradigm MiniLink (CGM) is still great, but the cons of it finally exposed themselves. The infusion sites get infected easily, even with proper preventive care, which makes the device hard to wear anywhere but my thigh (for some reason it just doesn't have as many problems there.) This makes it really hard to wear a pants. Now, some would say that it's every mans dream to come home to his wife not wearing any pants! ;) It just makes it difficult to go outside and do stuff in the wintertime. Now that it's warming up, the problem isn't a big deal.

My last HBA1C was 8.0, so that is a huge decrease from 11.0. However, it still isn't goal, so my endocrinologist is titrating my audio alerts to sound outside of 80 - 150, instead of 90 - 180. The audio alert goes off a lot at night, so that is sort of difficult, but I'm home all day so I can sleep in anyhow.

Lastly, at some points during the day I'm receiving too much insulin and still having insulin reactions. Since the Minilink is about 20 minutes behind real-time, I'm still having insulin reactions and at one point had even gained quite a bit of weight. I'm not sure if all users go through this stage, where you just have to wait until you can get it all programmed to your individual needs, but I know when I had gained the weight I was very upset about it. Granted, it went away quickly after we re-programmed, but those months were a strain, emotionally.

The conclusion to all this is that I have decided to absolutely follow through with the transplant. I've had some light kidney damage recently diagnosed, and my pituitary tumor has grown a slight amount, and I would just be better off if I had a working pancreas. I go for my annual work-up for tissue panels and cardiac tests on June 3, so I will be sure to post again and let everyone know where that stands. My husband doesn't think I should get the transplant, because he believes it will eliminate the fair amount of time I have now where I'm well and can enjoy life. He believes that being on immuno-suppressant therapy will really make me sick more often, and I'm sure at the beginning, he'll be correct. But the transplant team claims that after about 6 months to a year, I will be loving life like I haven't since diagnosis.

So far, my panel has rejected all donors, and I am still 2nd on the list. This makes my team
think I'll probably have to wait a while longer than most candidates. Hopefully this new panel and work-up will accept a donor, and I can get on with getting on!

As always, thank you guys for all the support you've given me- emotionally, financially, physically. It is all so appreciated, and I Pay It Forward whenever I can. The fundraiser is open again, as I have funds for the sensors through the beginning of Aug. 2008. I'm still trying to find the answer to the question about diabetics being donors, and I've gotten a lot of conflicting information, so I'll respond to the post on that as soon as I can.

Thanks guys ;)

-Connie

Wow!

What a change in my life. For all those that disputed the fantastic effects of having a Minimed CGMS with the pump, I can't tell you enough how this has changed my entire day, every day. I went from having an HBA1C of 13 to having one of 7! That is nearly 1/2! Also, I defer to one of the reader's letters in this month's issue of Diabetes Digest, which praises the Minimed and tells of another life changed permanently by the new technology.

Since getting the system, I have jogged, been fishing, gone shopping at the mall with my children twice, frequently go out with my family, sleep less, have more energy, and am just generally more healthy than I have been in probably 10 or 15 years. I can't thank the people that helped me get this enough.

I admit there are annoyances. The alarm goes off anytime my blood sugar is outside the parameters I set (70 - 150). It goes during the night and wakes me up so I have to dose, it goes off pretty much all day and I have to dose and it will continue to do so until we've tweaked the pump to deliver the amount of insulin I need each day and night to stay within the parameters. Fortunately, it has a mode of "vibrate" so I can turn it off when I'm at the kids' school functions or movies.

While the sensors are approved for 3 days (72 hours), I am often able to pull 4 and 5 days out of each one, lowering the cost to keep the device running. It is still, of course, extremely expensive and I await the day insurances will foot the bill to keep diabetics healthier. I haven't been in the hospital for DKA since I got it.

I am sincerely wondering if I should stay on the transplant list at this point. My tissue panel still has the second highest rejectivity rate they've seen at IU Hospital. The idea of immunosuppressant therapy just scares me. I'm also afraid of how long the recovery period is and how much of your life has to be dedicated to workshops (2xweek for the first 6 months). If I can stay this healthy without all that stuff, should I still do it? It's just a question I ask myself, and at this rate, I won't have to truly answer it for a long time.

In the meantime, I'm giving away thousands of unused, still-wrapped needles for injection. If anyone is interested in them and willing to pay the shipping costs, feel free to email me at my normal email, axislove@shianet.org and we'll work something out. I also have quite a few bottles of Lantus insulin that are up for grab. They were never refrigerated and worked okay for me, but I'll leave it up to the user's discretion whether they want them or not. I know how expensive all this stuff is and would like to give back what I can.

As always, anyone can message me with questions or comments. I appreciate all of it ;)

Fait Accompli!

It is time to say thank you to every one that contributed to this moment: I ordered the Minimed Minilink System today and it should be here within a few days. I promise to let everyone know how it is working, and I'll probably take some photos of it so everyone can see. Thank you to everyone that was there for me emotionally, financially, physically, spiritually, and any other way. I am blown away that this cry for help was met with so much compassion and empathy. I am eternally grateful. If any donations come in after this point, they will be for next year's supplies (the sensors, which are $33/one, and last 3 days). Thank you again to everyone! I'll keep you all updated!