Just checking in…yes-I’m still alive…lol

Hi guys,
I haven’t posted for a while. Wrote a couple replies today, and one post about reduced electric rates–hope that helps a bunch of ya.

Well, summer is definitely here–the worst enemy of CIDP. I have been getting up between 3am to 5am, as I can only make it to about 12noon or 1pm, then must stay the rest of the day in my bedroom, in air conditioning.
I love the mornings–it is still cool and you hear the birds slowly coming alive from their sleep, with the occasional chirp becoming a chorus…lol.

I am getting much weaker now. I am on oxygen 24/7, though don’t use it in the early mornings. I am using the bi-pap more often now–was told that when it becomes necessary that I need the bi-pap 24 hours a day, is when they will take me in for a tracheotomy and put me on a respirator.

Two summers ago, I crossed my fingers that I would make it to this August, and touch-wood, I have. AARP has a life insurance policy, that I joined 2 years ago, with a “no questions asked” type of policy. But you had to stay alive for the first two years of the policy–and I think I made it. So, now I can die in peace, leaving some money to my loved one.

I continue on getting my monthly chemotherapy, Cytoxin. It didn’t stop the CIDP, but it slowed down the downhill progression. I was so healthy before all this hit me years ago. My neuro has me going to weekly aquatic therapy, to help my legs from contracting, and increase circulation for the skin breakdown. I used to love to swim–now it takes great effort just to walk across the pool while being held up with bouyant strips.

But, I have faced reality. The only hope is that stem cell program becomes no longer an experimental procedure, and becomes under the protocol of normal treatment for CIDP.

I am greatly pleased when I see so many here being able to be helped by IVIG, steroids, or Plasmaphereses. Unfortunately, there’s the 5% of us that the normal treatments did/do not work. Which is why I don’t post much anymore, unless I can express a past happening that might help someone else.

Drugs:
=For those experiencing muscle spasms/cramps, I have found being on Flexeril 10mg in combination with Valium 2mg, three times daily TREMENDOUSLY helped me, as I use to get severe muscle spasms, and even wake me during the night.
=They now have the pill form of Marijuana, “Marinol”, in generic form, which lowers greatly the cost of the drug. I don’t use this much, only when I haven’t eaten for about a week, or am in much discomfort. It does help me alot, it does increase my appetite/lowers my nausea. And when the pain pills aren’t quite taking the pain away–this helps alot.
=Because I have a neurogenic bladder, and have a foley catheter, I have learned when I have a real UTI, (Urinary Tract Infection). Since I can’t feel down there, I couldn’t tell when the normal symptoms of a UTI come in.
I take Detrol 2 mg daily to stop the normal bladder spasms. But, when the onslaught of severe, very painful bladder spasms come on, THAT’S when I know a UTI is happening, and I just give a quick call to my PCP, and he orders an antibiotic.
=I find the drug Neurontin to be very helpful in nerve pain. However, when I first get up EVERY morning, I feel like I just got off from lying on the beach in the sun, with a bad sunburn all over my body. I must take 2 Vicodin every morning, and wait for about an hour before the symptoms start going away.
I find that it is only Vicodin that will stop the “burning sensations”.
=I am allergic to the group of anti-nausea meds, called, “Phenothiazines”, which include such meds as Compazine and Phenergan. (I took a Phenergan pill once, a few years ago, and ended up in an abulance on to the Emergency Room.) So, there are two, VERY good anti-nause meds, Zofran 4 to 8mg, and Tigan 300mg that works wonders. Zofran is used mainly for people on chemotherapy.
=My digestive system no longer works, and they use the drug, Reglan 10mg 4 times daily, to get the stomach to empty out, since it no longer works. But,
my nephrologist is a doc of the old school, and also ordered an antibiotic, Erythromyacin, for the side-effect reaction only, in that it also assists in getting the stomach to dump, (gastoparesis).
=My neuro read in one of his “neuro magazines”, that Mestinon also assists people where CIDP has hit the autonomic system, so I take Mestinon 60mg 4 times daily for autonomic dysfunction.
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I hope some of these drugs I mentioned might help some of you. If you have any questions–just give me a shout.
All the best,
Ken
(KEDASO)