Thank God For Dr. Grubb (And An Update On My Eds)

[sandymbme]

I went to see Beverly Carabin, PhD (Dr. Grubb's nurse practitioner) yesterday. While the visit in and of itself was not great, my condition is deteriorating rapidly, and there is precious little to be done, I had a great conversation with Beverly about how much easier it is to cope with my illnesses given the compassion and understanding of Dr. Grubb. He is truly the kindest, most compassionate soul I have ever met. It seems like an impossible wait to get in to see him, but for those of you who are on the waiting list, I urge you not to give up. Seeing a doctor that is so very knowledgeable about POTS, really at the forefront of research and at the same time is so passionate about the care of each individual that he sees, is well worth the wait. Even though my combined diagnosis make my condition very difficult to treat, being seen by him and Beverly, and being treated with courtesy and understanding, and most of all COMPASSION, makes dealing with all the ignorant idiots who have no idea what to do with me and so play "pass the patient", or worse, write me off as pain med seeking or a hypochondriac so much easier to bear. Isn't it interesting how even when the answers suck, having real answers and a little bit of real empathy is so much easier to cope with than dismissiveness and disbelief.

The bad news is that Beverly said the celiac disease has aggravated the POTS and EDS to a degree where it has become extremely difficult to stabilize me. We are going to try DDVAP, because dehydration is one of my major issues with the celiac. And the celiac even complicates my hydration. Had a horrible reaction to the chloraprep, seeping blisters formed under my tagaderm and so had to have my port de-accessed to treat the blisters. Icing on the cake, rainy miserable weather has me puking (literally) from pain, have been fighting off migraines all day, as well as suffering from my hip just completely giving out. I desperately want to sleep, but am just in agony. My pain doc even gave me steroid injections today, and I didn't even get a temporary respite from the anesthetic. Sigh. At any rate, Beverly said my condition is probably going to continue to degenerate, and that with aquatic physical therapy (which is the only form of PT my doctors will recommend/allow anymore, my joints are just too bad to do PT without the support of the water.) and pain management I may be able to at least keep the pain at a tolerable level. All the more reason to look forward to my PT eval in 3 weeks. I also had a bone density screening today, and am going to have an MRI of the hip as well. Thank God I have my faith and the support of my wonderful fiance, and very good friends and family. It was really tough news all around. But she was very kind, and that really helped to soften the blow. It is just so hard to watch my body fall apart, and I am so angry at myself for not taking better care of myself in my twenties. I am sure I took years off my mobility by the abuse I subjected myself to, as well as the punishment of 2 bad marriages. Those of you who are diagnosed young, if you have "remission" (and hopefully cure!) when you are young, take the best care possible of yourself. I am convinced it extends your healthy years.

Enough of my self pity party. I am blessed beyond words, I have so many wonderful things in my life, and that is where I need to keep my focus. Counting my blessings is a far healthier, happier way to live. But I think I wouldn't be human if I didn't occasionally grieve what I have lost. In the meantime, I will be shopping for ways to decorate a wheelchair to make it snazzy and fun!

Sandy

[issie]

So sorry for the pain and agony you're in. I'm one of those with EDS and find my body crumbling beneath me too. I'm in my 50's and it seems like things are just getting worse. Had a miagraine all day and am up waiting for the pain pills to kick in and muscle relaxers to ease my neck tension so I can hopefully sleep a little tonight. Let us know how the DDVAP works - it's the only thing I haven't tried. I have hyperPOTS - is that the kind you have?

I had ulcerative colitis in my past and one thing that really got my gut ecology better was Colostrum with beta glucans in it. The best brand is Symbiotics the one for Immune problems. I had it so bad I had to do chemo twice. This is what healed me and gave me my life back. I'm not having gut issues right now - but thinking of going back on it because of other auto-immune problems.

Issie

[sandymbme]

Hey Issie! I am doing probiotics and my PCP recommended boswellia and Metagenics UltraInflamX to try to calm down my gut, and get things moving. I suffer from severe constipation and diarrhea, (big surprise with the celiac) and seem to be having some really severe motility issues. Every abdominal CT I have ever had, (including one last week) has shown that my stool was backed up past my colon. Even when I have diarrhea, I just have a heck of a time "clearing out". I am seeing a gastro at the Cleveland Clinic on the 11th, maybe they will have some fresh insight.

I can't do muscle relaxers at all. The last time I tried, I had half a Robaxin and fell flat on my face. Without the support of my uber tense muscles (which causes a fair amount of pain on it's own) I just can't support my own body weight. It was quite the rude awakening in to just how much my joints have deteriorated. I am praying, really, really hard, that I will be able to walk down the aisle next October when I get married. As I am currently shopping wheelchairs, because my left hip just will not support me anymore in a reliable fashion. The pain is just too much to bear. I am the opposite, I suffer from terrible hypotension, and take the max dose of midodrine, as well as IV fluids to try to maintain a somewhat safe BP. Otherwise I have syncope episodes literally every time I stand anymore. The celiac really interferes with the absorption of fluids and minerals, (like salt!), so it is just impossible for me to sufficiently hydrate by taking fluids orally. Getting ER and hospital internists to understand that is my regular source of frustration.

Sandy

[sue1234]

Sandy, sorry you're feeling so bad, but glad you had a wonderful appt. with Beverly!

A question. Is your celiac intestine not healing since being diagnosed and eating correctly? Did they say what to do about that?

[chipper]

My heart goes out to you. Feeling bad gets so tiresome. Glad you have DR. Grubb and Beverly. Blessings to you and your family.

[issie]

As for muscle relaxers the only one I can use is Bentyl it is only 10 mg. and is usually used 4 times a day. I only take one at night. What it does for me is relaxes my muscles and my colon. It will help me to empty out because it relaxes the colon walls so that things will release. The doctor told me it was very good for this. But, if you have a problem with gastropherisis he said to be careful with it. I didnt show that as one of my problems - things went through properly. But, I do have my colon spasm and not contract properly for elimination and this really - really helps alot. The Bentyl also allows my body muscles to relax and I sleep better.

I can't take heavy duty muscle relaxers because they will make me worse - but this one seems to work well for me. It's an oldie, but a goodie.

Issie

[sandymbme]

I didn't realize Bentyl worked for that. I don't have gastroparesis, but I do have massive problems with motility. Had great results with Reglan, but I developed the neuro side effects and had to be taken off of it. I do miralax every day, but with mixed results. I see my doc monday, I may ask about that.

Sandyy