Tiny bits of progress . . .

Post #420 . . .

The good news is that the sores on my legs are definitely looking better …. Guess the medication is working & now that I’ve avoided all lanolin products.

After three weeks of many sleepless nights, I finally resorted to making an appt. w/my family dr. on Friday. It turned out that he was not in, so I ended up seeing another female doctor, which was probably better. She strongly recommended that I take the smallest dosage of Ambian (sleep aid) for the next month, until things hopefully get back to normal. She thought I could take it for a month & would not have big issues with getting off of it …. I hope she is right. I found myself making work mistakes recently that I’d normally never make, so I had to do something.

It is hard to judge on the heel pain …. still there, but I’ve worn my best tennis shoes for the past three days, so it is not quite as noticeable. I have also been doing Advil every 4 hrs. on the dot. Didn’t hear back from Dallas yet … he was out on Friday, so perhaps I’ll learn more on Monday. I guess you’d say I’m dealing with it – still room for improvement.

Last night I spent the night at mom & dad’s house and something malfunctioned w/my garage door after I left my house. The garage door ended up being up all night with my house open. I returned home this morning, to find everything open! Thankfully all was okay inside the house, as my laptop was very close to the inside the door. Big praise that God protected my house & contents! Needless to say, I had the garage door repaired today.

Emotionally I’ve really been struggling lately with anger/frustration related to all the money and missed opportunities that have occurred as a result of this long medical journey. Pray for encouragement and perhaps the dream of becoming a wife/mom might still happen.

Thankful for the little bits of progress this week, your e-mails, prayers & cheery phone calls!

Love,
Jenny

Appt. Follow-Up ... no real news

The appt. w/the STL orthopod today was exactly as I suspected …. He had no idea why the foot pain existed. We did x-rays, but they were no help. Everything is fused in the hind foot, except one tendon, so his only conclusion was that was the source of the pain – no idea on why it has started. He suggested that I take Advil and wear the surgical boot for 3-4 weeks and see if it goes away. I’m doing a steroid now and that is not cutting it, so I don’t have much confidence in Advil. The boot in 95 degree temps would not be fun …… I still believe it has something to do with the tendons being lengthened in the front in May, because I can feel a pulling/tightness feeling. I may send Dallas a fax tomorrow & see their thoughts on the situation … it is always tough from a distance.

A cortisone shot could be done in the hind foot tendon, but it is deep, painful, and at a tricky place, so it would have to be done under x-ray surveillance. I opted out of that for today, as I’ve never had success w/cortisone shots.

He also reiterated that I need to keep stretching manually the little toe down, because he fully expects the problem to return at some point – not real encouraging news. It is always so frustrating to leave feeling like we’ve made minimal/no progress. Financially it is a bummer, too. He didn’t even mention pt as an option.

I’m in a mess with Wal-Mart and past prescriptions that have been filled. I was entered into the computer system as Jennifer Eickhorst and Jenny Eickhorst. Under the Jennifer Eickhorst entry, there was NO insurance linked to this (I’ve always had insurance), so I’ve paid full price for who knows how many prescriptions over the past six years! Big UGH! I can only submit a claim for the past year, which is another downside. I found the error really by mistake, otherwise I’d never have known this …. don’t want to think about how much money I’ve overspent unnecessarily.

I have slept some the past two nights, but it has still been a struggle.

Need to get some dinner …. hoping for better days ahead.

je

Hanging in there ....

I apologize for the lack of updates this week .... I've had insomnia every night, so it has been a long week. I did go to the Cards game on Tuesday and made it okay with the meds. It was a great game, but hotter than ever. The heel pain does continue. It got a little better on Wed/Thur., but then was present all day Fri. & today. I have an appt. w/my STL orthopod on Wednesday late morning ...... I'm not sure what he is going to be able to do (if anything), but this much pain day after day is not right. I wonder if it is hurting in the back of the foot, because the little toe is still up in the air ..... but even when all the toes were up, I did not have the heel pain. It is frustrating to say the least.

The spots on my legs might be looks a bit better - at least that it was mom says! There are no new spots starting, so that is good.

I am so, so, so ready for a night of solid sleep. I think I am subconsciously thinking about all that is happening at the moment and I am having difficulty relaxing. We've had a lot going on at work, too. I went to GNC today and got two natural sleep aids, so I'm trying that tonight.

Keep praying for the heel pain to diminish, Staph to totally go away & sweet zzzzzz's.

Love & hugs,
jenny

Heel pain issue ...

There has not been any real big change or improvement yet with the Staph infection or allergy issue. I think it looks a bit better when I first get up in the morning and then it gradually looks worse as the day goes on. I am doing the meds and bedtime cream/wash routine, as instructed. I go back to the allergist on 8/6 and have to keep reminding myself that this could take awhile to get turned around. I read online that it could be 6-8 months for a Staph infection to go away.

In the last week I’ve been having a pain issue on the inner heel area. It was really bad this morning & I had to make myself go to work. I’ve had this in the past when the positioning of the toes was wrong, but now that they are touching the ground I don’t have a clue why there is pain. I’ve been taking a narcotic to make it through the work day. I may have to go & have it checked out by my STL orthopod … pain is normally always a positioning problem (in my case), but I don’t see anything out of position! I’ll watch it a little longer, but this has started out of nowhere. Perhaps I need to return to pt, but I’ve had so many medical expenses lately that I was trying to avoid starting that again. I vaguely remember hearing at some consultation appt. (not Dallas dr.) that sometimes when you lengthen the toe tendons, it causes heel pain to start ….. hmmmm. I have not had constant pain like this for quite some time.

Tomorrow & Wed. we have 115 inner city kids at JA BizTown for an all day program from 10:00-3:00pm …. both will be challenging days, even with a normal foot! Tomorrow night I have Cards tickets, so it will be a long day. Someone gave me $91 seats, so I hate to miss the game. I hate to take meds to make it through, but it might be the only way tomorrow.

Heading to bed early tonight … the prayer request for this week is for the heel pain to go away & for my walking to improve.

Hugs –
jenny

Allergy Testing Results ...

I need to begin by saying a huge thank-you to all of you who prayed in the last 48 hours for a clear diagnosis from the allergist today. I am normally not a complainer, but I am thrilled that the patch testing is over … it was definitely one of the most uncomfortable things I’ve endured.

Today was a big day for answers to lots of unknown questions. I truly think this dr. is one of the most intelligent/thorough docs I’ve ever seen. She spent 40 minutes with me explaining the results of all the testing and her suggestions on treatment. The bottom line is that I have a Staph infection and am allergic to all tapes, adhesives, and something called wool alcohol (aka: lanolin).

The Staph infection has likely been present for quite some time & probably came from some hospital, surgery center, medical personnel, etc. …. think of the hundreds of “medical places” that I have visited. The blood work was totally obvious for Staph. The tape allergy was no surprise …. It is going to take a week she said to get over the tape reaction used for the patch testing. Honestly, I am surprised that I have not had Staph before given that we’ve done twenty surgeries. The dr. was glad that I do not have kiddos at work for awhile … less chance of more germs.

As for the lanolin allergy, this was the cause of the hives that I had 18 months ago. Lanolin has been in the steroid creams (I bet I’ve been on 10-15 of these in the past year), moisturizers, lipstick, eye make-up, shaving cream, makeup removes, any protective cream, hairspray, etc. I have a huge tub of prescription creams that we’ve tried unsuccessfully that we now know have been part of the problem.

This allergy very often involves swelling of the lips, which is what I had horribly at one time. Every day I’ve been using a lotion (Lubriderm) on my legs that had lanoline in it … this combined with my body having the Staph infection has not been a good thing!

The Staph infection is something that likely should have been caught before now on blood work, but I cannot change that fact. I am on major antibiotics, and am starting this leg wash/Rx cream routine tonight before bed. She suggested that I buy new 100% cotton sheets, so I did that tonight. I’m on the medication for the next 21 days and then we’ll re-evaluate … Staph is commonly hard to eliminate. The leg rash should go away with time, but it is a characteristic of staph. She said to be prepared for it to take longer than 21 days to cure.

This dr. has asked the lab to do another test to see which drug would treat the Staph the best, so I may learn more on that in the next few days. I have not heard back from Chicago on the hardware contents in my foot, but I did read my copy of the op notes last night and it referred to titanium several times and not nickel (which was our fear), so we are leaning toward thinking there is likely not a metal allergy …. Big PRAISE!

The allergist also told me that to just look at me you’d never know/guess that I’m walking around with a Staph infection, so she was not surprised that the ER in May, other dermatologists/allergists/family dr. had missed it (although it doesn’t say much for any of them). I am fortunate that the incision from the May surgery healed, given that an infection was quite likely present before May. I feel like a new person tonight just knowing that we finally have some answers & hopefully the treatment plan will work.

The allergist did not charge me for another co-pay today, since it was a follow-up from Monday …. this has never happened before, so I was thrilled to have saved fifty bucks.

I need to close for now and read the directions on what I’m supposed to be doing w/this bedtime wash/cream routine. I’ll have to write more soon on what happened today at the Wal-Mart pharmacy counter …. it was definitely a God blessing.

Thanks again for faithfully praying for answers, dr. wisdom, strength, and patience this week. There is still likely a long way to go with this, but I’m very grateful that all the other blood work was normal. Today was another example of God’s faithfulness and to never give up! Off to try out my new sheets & hopefully get a better rest tonight …..

Looking forward to itch free days ahead …
Jenny

Allergist Appt. Summary ....

The allergy appt. was okay …. at least I felt like it was a step in the right direction. This was a new doctor and she was super thorough. We talked a long time about my history, she read all my notes and went over all twenty surgeries w/me in detail. Obviously my case is complex, as there are so many possible causes. She suggested the following:

Blood work – to rule out thyroid issues, diabetes, any autoimmune disease, hypoglycemia, latex, etc.

Culture for Staph Infection – she cultured liquid on the rash & from the inside of my nose.

Internal Hardware – there is a possibility that I might be allergic to the hardware that is still inside my foot. There can be a delayed reaction, where it takes years for the body to realize it as a foreign object.

Patch Testing – She taped this big patch on my back that is testing for the top 18-20 common things. We leave it on until Wednesday at 2:30pm & then I have to return to her office to have it read. We both anticipate the paper tape bothering me, but I’m going to try to tough it out for 48 hours.

I had really high blood pressure going into the appt. ….. not sure what that was about (probably nervous). It was even higher after I heard the idea of the hardware as a possible issue! Pray that it is something else, other than a hardware problem. I don’t think going in & removing it is an option. I have a call into the Chicago dr. to get the make/contents of the hardware that was used.

I’m going to have to keep really busy for the next 48 hrs., so I don’t think about the taped stuff on my back. Good thing I washed my hair this morning! Keep praying for a clear diagnosis, for the blood work to come back by Wed. afternoon, and for toughness during the next two days!

Will keep you posted after I hopefully learn more on Wednesday ….
Thanks for praying!
je

Allergy Appt. on Monday ...

I was able to get an appt. w/the allergist for Monday afternoon (7/12). I am hoping that it works out to do the allergy testing at the initial appt., but we’ll see what happens. I am told it is possible, but it wasn’t a super confident “yes, you can do the testing also on Monday.” Not taking any medications this week was been rough, but I've almost made it.

I stopped the steroid tape 24 hours after starting it, because it made things worse and more spots started to appear …. It was a long week of trying not to itch! I typed up some notes to take to the appt. on what I think aggravates the skin.

We are headed to the Muny tonight to see the Titanic. I’m thankful it is a cooler evening outside. Camp is finished now at JA … yippee!

All is still stable with the foot. The suture line skin issue from several weeks ago finally ris better. The skin on the foot actually looks better than it has in a long time … it is the spots on my ankles and legs that looks like I have a bad case of the chicken pox.

Pray for a good appt. on Monday afternoon, patience and for a clear diagnosis.

je

Biopsy Feedback . . .

Post #413 . . .

I finally upped the pressure a bit today and politely requested a response on the biopsy results, after over a week of waiting. The dermatologist finally called me at 5:15pm to tell me that it is an allergic reaction to something and that I’d need to see an allergist for allergy testing!! UGH!! I about dropped the phone, as that was about as vague as it gets. She attempted to convince me that now we know that there is a legitimate problem ……. no kidding! Her philosophy was that my itching the spots is not allowing the areas to heal. I agree to a point, but in general I have a tough time healing regardless of itchiness – no surprise there. The biopsy area from last week is still rough looking it is half the size of your pinkie finger & has been over a week.

I’m glad I’ve spent $200 thus far on this with minimal progress. The dermo. dr. wanted me to see a specific allergist, but she did not have the phone number, so I have to call back on Thursday (office closed tomorrow) to get the contact info.

She did prescribe a steroid tape to use for the short term. I’ve never done well with any kind of tape on my skin, so I am a bit leery. I filled the Rx and came home to read the tape instructions. It is transparent tape and it has to be cut in tiny squares to cover each spot, leave there for 12 hrs. or until it has to get wet (shower), remove and let air dry for an hour and reapply. Quite the process! The roll of tape has 80 inches and I used 12 inches tonight. At least the tape is not black or some weird color! If the tape is going to work, I should see some improvement in 48-72 hours.

The dermo. dr. did not think it had anything to do with past surgery, sutures, surgical wash, etc., because it is on both legs. It is the worst though on my operative foot. If it were a true allergy though, you’d think it would be spreading and it is not ….. I’ve had the same spots for 8-9 months – no worse, but it won’t heal either.

Allergy testing is no picnic …. I did it as a child. On the way driving home tonight, I wondered if the tape would clear up the spots perhaps that would solve it! It is my idealistic, magical, done with new doctors thinking. The “D” section of phone numbers stored in my cell phone is huge with about thirty doctors listed …. guess we’ll add one more to the list.

Pray that the steroid tape works, my patience level remains high and for ease in getting an allergy appt.

Thanks for checking in and for your faithfulness in praying . . .
Jenny