Don't Be Shy

[MailMe01]

Whoops, forgot to answer your question! (Yeah, so much for MY short-term memory!!) Ibuprofen is what always worked the best for me for headaches, menstrual cramps, etc. I took it, but as one of my Drs pointed out, he takes much more on a daily basis for his arthritis than I did at my worst. But I guess my body decided it just didn't like the stuff anymore. After meningitis, I stayed away from the cheap Wal-Mart ibuprofen that I had been using and stuck with name-brand stuff (as my neurologist said, "Generics are made by the lowest bidder!"). But ultimately, I was getting headaches more & more frequently. The more I researched, the more I decided I needed to stop using it entirely. And I think that was a good decision for me. Others (my husband included) can use it with no problems (even though he admits to being just a little scared of it now).

[sumrluvin66]

Jan,
I went to see my general physician this week and he is just confused with my symptoms. He said he is sure what I am experiencing isn't from meningitis being it has been 10 weeks. He asked me numerous times if I felt this way before I was sick, and asked me 3 times if I had a sore throat. No to each. When I complained about the very distracting ringing in my ears he wanted to refer me to an audiologist, but I opted to address this with the neurologist in June being "I think this is ALL RELATED" to meningitis. He doesn't. He asked me if I was depressed. I said No; however, I then said that being this way IS affecting my mood. It's making me crabby being I love yard work and I have a setback for days if I do things that a year ago would have taken little effort or resulted in maybe a couple sore muscles. When I complained about hardly being able to walk after mowing my lawn he told me NOT to cut back on activities. He said he wants to know if I get better without cutting back rather than not knowing if I'm better by cutting back and then feeling better. He says then I might be feeling better simply because I'm doing less. Does that make sense? I'm becoming very aggravated. I also asked him if my joint pain might be related to being septic by the time I was hospitalized and he seemed to get irritated and made it seem that I was not septic while in the hospital. I remember the nurse saying I was, and I remember asking her what septic meant. She told me it means you have bacteria in your urine. Weeks later I googled it and found out that this TOO CAN BE FATAL if it progresses to shock. So, now according to him sepsis also has nothing to do with how I feel, and I am not sure about the after effects of sepsis, so this may or may not be right.

All in all, I've had it and decided to drive 50 miles to another medical group that is actually affiliated with the Mayo clinic in Rochester MN for a second opinion. My appointment is tomorrow. I requested a dr with knowledge in treating meningitis, so we shall see. I have an idea that there isn't much that can be done other than to allow the passage of time to heal; however, I am becoming upset that I am being told that my symptoms are unexplainable, or that it is implied that no one else with meningitis experience symptoms past 10 weeks (by my physician). I'd also like help creating a pain management plan so I can do some of the outdoor activities I love and that I find therapeutic without being so exhausted I could literally stay in bed for days.

That's funny. I thought you had a car crash and here it was your computer! I'm sorry about all your stress right now. With the ringing, I noticed that too that stress or doing to much makes it way worse to the point it is quite consuming. Usually I can ignore it. Sorry to hear about your father's passing.

I really appreciate hearing about your experiences. It is validating.

[sumrluvin66]

Friday, I went to a doctor who works with infectious disease for a second opinion. I'm glad I did because he eased my mind by saying that my symptoms are residual, unlike medical opinion indicating I shouldn't be experiencing symptoms after 10 weeks. In my mind I think I knew that what I was experiencing was because of meningitis (I wasn't like this before), but I was starting to second guess things being my other doctor made it seem so "odd" or unheard of, so he even checked me for Mono, thyroid, anemia, and something else because he is convinced my symptoms are unrelated. I just don't get it. I think if people read this and are having the same problem with not being heard by their physician or if the medical opinion does not make sense I'd recommend they seek a second opinion too. I should have 2 months ago. It doesn't change how I feel physically, but it helps knowing that the list of ongoing symptoms are explainable as residual symptoms. It gives a peace of mind.

[dmat01]

Mu husband was been very fortunate that his primary Doctor realizes that everything concerning Dennie has changed since meningitis. His Doctor does not count the weeks off, and say he should or should not be at the current level he is at the moment. His doctor has from the very first stated that residals and aftermaths would be continual if not for the next two years of his life but possibly throughout his entire life. Although we would love to witness a complete recovery from this horrible experience, at least, we have complete support concerning all the issues which he faces on a daily basis.

My husband knows he does not remember the right words, and he does attempt to get to the point so others can guide him along in the process. He may never be able to converse with others on all the topics he once did, but h e is still a live, stilll trying new things to him( things that use to be everyday things but are new now) and not giving up.

My husband is slow, very slow in phsycial activitities such as mowing the yard, taking out the trash, you name it- he is slower. He may have to be told over and over how to do something- but eventually he gets it.

My husband can't take anything for granted, because there is nothing automatic anymore. Each and every day is a new day and it has to be taken one day at a time.

His brain does require a lot of rest. If he attempts to push himself to far, the brain willl shut him down. The brain does not like overload and sleep is all that will revitalize. If he abides by the signs, rest, and then start again- he is successful in whatever he does. It takes my husband longer to do things. It takes him longer to do the same things he use to do on a routine basis prior to the illness. The point is- So what! We are all different, but we are alll the same. Try to stay focused on being all you can do with what you have to deal with. While it is different from what other comrades have, it is what you have to work with at this point. If you stay moving in the right direction, even at a snails pace- it is truly progress. Do not let others whom have not had this illness delegate what is progress and what they see as pitfalls.


Remember, you are unique. Not many Doctors have experience in treating bacterial meniingtis. Yes, the fatality rate is extremely high, and you are one of a few that has beat the odds. IF more victims were on the suvivor's list for this illlness,then Doctors would have a lot more experience in answering the questions. Be patient with your physicans- You are a guinea pig. Let your phyician learn from you in order to be a help to someone esle later. Yes, I know easier said than done...... but really, this is the way it is......

[sumrluvin66]

dmat: Clearly your husband is a fighter and survivor. =) I'm glad to hear about his progress, even though he continues to struggle with a number of things. You said it seems as if his brain shuts down, and I experience something similar if I am getting or am exhausted. Literally, I have to think to walk. Weird, I know, but if I am super tired or have been physically taxed I have trouble navigating my body to walk up steps or more complicated movement. I have ongoing problems with forgetting words, but I think mine is mild. I also forget very often what I was going to do or say. That is frustrating, and it results in a "blank" feeling in my brain even though I KNOW I was going to do or say something it's gone. I know that is common for all of us from time to time, but for me know it is very often (numerous times daily).

My new doctor is optimistic that all of this will resolve once my meninges heal. He said that because my diagnosis was missed for so many days my recovery will be longer; also, he said I should not have been cleared for work for "at least" several weeks after being released from the hospital. He said that being they missed it for days my meninges are scarred. That doesn't sound good, but he sounded optimistic that I will recover; however, he does want me to follow through with the neurological assessment in June to support what he said. He considered doing a CT scan Friday but decided to let the Mayo Clinic do that and he said they'll probably do an MRI as well.

I have no plans to return to see the physician that I feel is giving me a hard time. I just don't want to deal with the frustration of him questioning why I still have headaches, back pain, exhaustion, etc., when it is part of my surviving meningitis. I see it like telling a chemo patient that it is unusual they feel nauseated and tired after treatment because of not being aware of the after effects. It is not ok. I believe he should have referred me out immediately following my hospitalization because meningitis is outside his area of competency.

Three weeks from today I go in for my neurological assessment. I have a lot of questions to ask. I'm a little scared they will do another spinal tap, but I'll live through it if they do. In all honesty the first one didn't hurt except when he missed and hit one of my vertebra. That about put me through the roof. When he did the spinal he said it might give me a headache, which made me literally laugh. How could the spinal tap headache be worse than a meningitis headache is what I thought. Now that my headaches are not at a severe level anymore, a spinal tap headache would not likely be as easy.

dmat, is your husband able to read and so forth? Is his long-term memory affected?

[MailMe01]

Wow, dmat, you summed up the after-meningitis experience so well in a couple of sentences: your brain requires a lot of rest, and if you push it, your brain will shut you down. That so entirely sums up my experience! And it lasted for months. I just remember my wonderful hubby just snuggling me and letting me sleep. I had to work, but when I got home (drained just doesn't quite explain how I felt....more like beyond exhausted and just kind of stumbling through life!) he just took over everything for me and let me sleep when I had to, which was all the time! I really feel like it took about a year and a half before I felt somewhat normal again. I couldn't have done it without him. Dmat, sounds like your hubby is much more debilitated than I was. Hopefully he can get some ongoing therapy to help in his ongoing recovery.
Sumr, I really think your Dr is flat-out wrong when he tells you to push through and keep going. I was always a very "sturdy" person (old farm girl and not the least afraid of work), with plenty of stamina and could handle anything. Then WHAM!, talk about having the rug yanked out from under your feet, I was worthless! Funny how over & over Drs push the issue of depression with some of the folks on this forum. Clearly they do not understand! (Although it sure can be a little depressing for the "experts" to suggest in so many words that it's all in your head!) I was a little afraid I'd never get back to my old self again. But I'm almost completely back again, so it IS possible! Don't let them drag you down, but realize it will take time for you to recover. And thank heavens for the Dr you just saw. Sounds like he is more knowlegable than the other guy. Just for info, because my form of meningitis is a very rare one, I was tested and tested for days while in the Neuro unit, for all sorts of strange things, including TB, Mono, Herpes, HIV, various rare forms of cancer (as end-stage cancer can sometimes cause eosinophilic meningitis too), parasites, and on & on. They literally ruled out as quickly as possible, all other possible causes. Thankfully, everything was negative, so they treated for Baylisascaris (parasitic infection), which was their best-educated-guess, and they couldn't risk waiting any longer (think worms tunneling through your gray matter).
Please let us know what the Mayo Dr has to say. Be sure to ask how many meningitis patients he has worked with! I hope it goes well, and please, tell him how all of us are saying/experiencing the same things, and hearing the same stuff from Drs. They need to educate themselves better on how to help us after the fact! My infectious diseases Dr said I am doing well, "Perhaps in spite of us". My neurologist was very good at answering all my question, except the ones she totally ignored. I think it would be great for a Dr to say, "I just don't know, but I will find out for you".

[sumrluvin66]

Mailme, I'm a farm girl too! I have never been afraid of physical work or tackling a big project. Yes, to what you said, "Then WHAM!, talk about having the rug yanked out from under your feet, I was worthless" Yep, nothing is the same right now. My old doctor continually asked me if I was like this before and I repeatedly respond, "NO." I live in MN so prior to being sick this winter I was fully capable of shoveling and blowing out deep snow without adverse effects, such as in a physically exhaustive funk for days following. My new doctor asked me once, "So you were a healthy person prior to having meningitis?" And that was it.

I searched for my new doctor, and found one about 50 miles from me that had "infectious disease" on his bio. He was very helpful and even left the room and brought in a book to show me information about the type of meningitis I I had. I probably could have waited a month to see the neurologist, but like I said my old doctor was making me question things and I wanted a second opinion on how I should be feeling right now. A month was too long to wait to find out if what I am feeling is indeed "normal" or NOT UNCOMMON for someone who survived meningitis. Even though seeing my new doctor isn't a magic cure for my symptoms, having a peace of mind is priceless. I should send him a thank you card. =)

[sumrluvin66]

I have my neurological appointment Monday! I look forward to hearing what they have to say. =)

[sumrluvin66]

I am wondering if anyone had a terrible time with joints in their recovery? I have never had knee problems, and I have since I was sick. Now, I can't bend my left knee anymore and my back continues to be very uncomfortable. I read a little about arthritis, and apparently bacterial infections can attack joints, most notably knees and less common the spine. Is this something that others have experienced? I am nearly 4 months out at this point. I'm getting very tired of how this has devestated my daily life.

[dmat01]

On June 20, we celebrated Dennie's birthday and the nine month mark since this journey started.

I have not been on to update or communicate with anyone lately. I truly miss getting the encourgement from communicating with others whom can understand what life is like for us after mengingtis. It confirms how little many of the Doctors know about this horrible disease. When they don't know what to say, they say- It is all in your head. Welll, Yes it is...... it totally took resident in that area of the body and refuses to leave the head alone. Now, with that established, I ask what is the game plan for the rest of my dear hubby's life if they can't start dealing with what we do not have a choice to deny. You should see the look in a doctor's face. I want to know about all the the other stuff we are clueless about. So far, I really have not gotten much support from the Doctor's. Sometimes I run into a Doctor whom says he is clueless too and wants to "pick " our minds about this. That is scary!

It hurts my heart when I watch him think so hard to do the simpliest things that I can do without any thought. I go through life just getting it all done, the laundry, cleaning or whatever. It does not matter, it does not take all of my complete concentration. It does for him. Then, there are those whom look on at some of the things we experience,( total strangers) and they do not always help matters. Ordering a meal at a resturant is not so funny to us as it seems to be to some onlookers. I try to ignore them, but there are times it hurts my Hubby far more than he would ever let them know.

On June 9, 2010 my hubby had another seizure. It was not pretty, but at least the neurologist has changed his attitude and is treating it. My Husband was placed on Dilantin, and it did not work out well. It has been a real struggle and hard road to navigate since taking the Dilantin. Today, he has been switched to Depakote. What I has read about this medication tellls me that is comsidered a wonderful treatment if there is no liver disease involved in the patients life. Well, He does have a liver ailment, and all medications attribute , contribute, worsen, and have major side effects for the liver. What really scared me- was one side effect was possible dealth, and that is something we have been tryingto avoid every since this horrible disease ravished through him.

Yes, Dennie has joint problems now. But, the doctors do not seem to acknowledge what the eye can not refuse to see.
Dennie walks like a 70 year old man, he is not real steady and stable as he use to be. He hurts all the time. My husband went from a workaholic that worked in the yard and shop after a long day at the welding shop. Today, his long days consist of having to postpone the daily nap due to doctor appointments or such. Every nap that is skipped grossly causes him to suffer mentally as well as phyically. The IV's given at the hosptial have started affecting the joint area around the site of IV. It is what it is, and no one seems to know what it is....that is what meningtis recovery really consist of.

I wish each of you well, and hope that your families are getting through this journey along side and with you.
I have returned to work and feel so many times that I fail as a caregiver. I go to bed wondering how I am to get through all of the it, joggling work and home, the lack of medical care, rather I will actually continue to keep a roof over our heads, and on an on, and on.........I have no choice, just as none of you were given a choice to turn down meningtis and tell it to go away. I am honoured to have share with each and every person whom post. I wish , oh how I wish that there was an interactive on line support group in which we could all log in and talk amongst ourselves. I understand that there is one available for the parents of children whom have fought this disease, but not for the survivors or caregivers of adult survivors.

Keep on Keeping on, and know that each of you have a special spot in my heart.